Doctorblue Blues

It's Time To Laugh and Stretch

2011-12-29T20:36:00.000Z

Guest blogger Allison Brooks contributed this article in timely fashion for those making resolutions for the new year.

It ties with one of mine — to let go, stop obsessing about what was and instead, concentrate on doing what will lead to positive outcomes. It’s a monumental feat for those of us with chronic illness and pain. Yet new studies show that exercise, stretching and laughter are the best things you can do for your health, no matter how much it hurts. Allison poses some less strenuous ways to ease into the habit.

As the holiday season winds down and the New Year approaches, everyone begins their talks of losing weight, getting fit and not eating carbs and so on. But before you deprive yourself of chocolate and ice-cream, and forcing yourself to go the gym, sit down and think about new ways to enjoy reaching your goals. One way to accomplish this is through yoga. I know you are probably thinking, but “I am not flexible” and “I cannot put my foot behind my head,” but that is why new alternative forms of yoga are perfect.

No matter what your physical condition or goal, there is a form of yoga out there for you. Below is a list of a few to get the ball rolling and you into a local studio.

One way to have a fun end-of-the-week stress reliever is laughter yoga. This yoga might not get your whole body tone, but it will work out the body core and ease the mind. There are many yoga studios around the country offering this form, and many nursing homes and hospitals are also jumping on the bandwagon. Because laughter yoga has been noted to reduce stress considerably, many elderly patients and people with an aggressive cancer diagnosis like a non-hodgkin’s lymphoma or mesothelioma prognosis have adopted laughter yoga. In this form of yoga, there are not many physically intense poses and movements, so the effects are comparable to the mental and spiritual ones felt after a traditional yoga session.

A fun way to set a goal and stick with it is to grab a friend or significant other to try AcroYoga. This is considered an alternative to the asanas, and combines acrobatics, healing arts, and traditional poses to produce a fun, yet strenuous yoga. Since the poses rely on the participation of two people (the base and the flyer), AcroYoga is perfect for friends. The lifting and holding of poses, tones every inch of the body and the relaxing movements at the end of the class offer mental ease.

And saving the best for last, there is AntiGravity yoga. This yoga is just fun for the adult-kids out there that love traditional yoga with a twist. Instead of practicing the poses on a mat, students hang and stretch from a silky hammock. This is a physically intense yoga and relies on great upper body strength and control. Pilates, calisthenics, and acrobatics are combined for an all-in-one yoga class.

So as you start to plan out your new years’ resolutions, keep in mind these forms of yoga and any other. Not only will they help you achieve your goals, but yoga is great to use every day for a stress reliever and workout.

We encourage your feedback. How do you cope with stress and chronic illness?

The Story #21: Channeling Stephen Colbert

2010-12-01T06:49:00.004Z

Maybe I’ve got this all wrong. Maybe I need to look at things from the doctor’s perspective and channel Stephen Colbert so I can upchuck thoughts as they occur uncensored while adopting the persona of a mainstream medical doctor.

After all, what do patients expect from a doctor within the typical eight-minute office visit? Miracles? Do they expect the doctor to change water into wine, exorcise demons or reverse years of accumulated oxidation from eating all those Big Macs and KFC fried chicken sandwiches – all by prescribing a magic pill???

To tell us more about the doctor’s perspective, I visited hyperbaric medicine specialist, Cosmetic Surgeon Eric Desman, M.D., as an outpatient in the Wound Healing Center at Inova Mount Vernon Hospital in Alexandria, Virginia on August 26, 2010.

I went there because Medicare pays for hyperbaric oxygen therapy for patients with persistent actinomycosis.

Dr. Desman is a handsome, burly type with the kind of intimidating arm muscles that come with a tire gauge much like those of ex-Marine and Daily Show correspondent/comedian Rob Riggle. (Google their photos. You’ll know what I’m talking about.) They’re the kind of arms that make you feel protected, and docs have to protect the weaker minds of their patients from worry.

Docs can’t show any signs of indecision or wavering when treating patients — even if they don’t have the faintest idea of what’s wrong with the patient. (The ubiquitous idiopathic ailment.) Docs have to be absolutely sure that the prescribed medicines or therapy will not “harm” the patient. (The Hippocratic Oath or Lawyer’s Treatise.)

House, M.D. fans may have noticed that TV Dr. Gregory House prescribes treatment based on an educated guesstimate of what’s troubling his patient. The practice is based on the assumption that medicine that cures the patient proves the diagnosis. But we all know Princeton-Plainsboro is no typical hospital. It’s the enchanted forest in never-never land. Prescribing treatment without a positive biopsy or culture never occurs in real life medical care. (Ahem.) Much too risky.

In real life medical care, doctors surgically remove a large enough sample of the patient’s tissue so the pathologist can definitively proclaim what the patient has prior to any treatment. As Dr. Desman said, it’s for the patient’s safety. Of course. And although performing such biopsies (cutting tissue) in patients with anaerobic bacterial infections causes the infection to rapidly spread, this cutting and removing of otherwise needed tissue ensures that the patient with an anaerobic infection will get worse and will therefore definitely need treatment. (Win-Win. No if, ands or buts here.)

I knew this. So I was not fazed when Dr. Desman told me that before I could receive treatment for my infection(s), I would have to have another doctor somewhere else perform such a biopsy. The positive test results I had, he said, expired after three months. It’s water under the bridge that I was not properly diagnosed nor treated previously. (No crying over spilled milk!) Docs have to make sure the patient is still sick now. (Miracles do happen.) And docs hate looking at other doctors’ homework. (Too much reading and deciphering.)

What’s the treatment? Oxygen. More specifically, hyperbaric oxygen therapy or HBOT, for short. In HBOT, the patient spends multiple two-hour sessions breathing in 100 percent oxygen in a chamber in which the oxygen pressure is higher than in the atmosphere. It’s used to treat a variety of ailments such as carbon monoxide poisoning, the bends (from scuba diving improperly), non-healing wounds and anaerobic bacterial infections, such as actinomycosis.

Inova Mount Vernon Hospital’s website calls HBOT “a highly effective and safe treatment.” In fact, in The Oxygen Revolution authors Paul Harch, M.D. and Virginia McCullough point out that the only side effect of HBOT that isn’t reversible is due to tank operator error – giving the patient too much oxygen under too much pressure. This happens when the patient’s reactions to treatment aren’t properly monitored. (Hospital liability is a side effect?!)

Dr. Desman did clarify that my lungs could collapse during HBOT if I had any lung conditions like emphysema, but that the risk of this side effect occurring was minimized by requiring all HBOT candidates to have a chest X-ray prior to treatment. (Whew! Had me there for a minute.)

Now getting a decent biopsy of an aerobic bacterial infection — one that lies on the skin – is one thing. Performing a biopsy on a patient with an anaerobic bacterial infection – one you can’t see – is far more challenging. Trying to even convince a doctor you have an anaerobic infection is akin to a new car salesman trying to convince his customer to pay for the clear coat on his new car. You can’t see it. The dealership won’t let you in the back to see if it’s actually applied…

Anaerobic infections nestle deep within tissue to avoid exposure to oxygen because oxygen kills anaerobic organisms. For anaerobic infections, docs have to get a tissue sample large enough to encapsulate and shield any anaerobic germs from coming into contact with the air so as not to compromise the specimen.

My first biopsy was from a tonsillectomy. The tonsils have tonsillar crypts that safeguard the actinomycotic granules from the atmosphere so they can be seen under the pathologist’s microscope.
Finding another biopsy site in the head and neck region proved a bit more challenging because there’s nothing there I really care to part with.

(Sidebar: Mrs. Christine Wicks, who was diagnosed with actinomycosis in England at age 67, had to have a biopsy prior to being approved for HBOT by England’s National Health System to show that the months of intravenous penicillin therapy failed to eradicate her infection. She had a large chunk of her neck removed, which was not only unsightly – leaving what she called “a visible hole in her neck” – but also caused the infection to spread to her lungs so she no longer qualified for the treatment for which she got the biopsy. How ironic.)

Dr. Desman instructed me to see Dr. Michael Abidin, an otolaryngologist I’d seen years earlier, for my updated anaerobic bacterial biopsy. “He trained at Johns Hopkins,” Desman said trying to reassure or convince me that although neither surgeon admittedly knew anything about actinomycosis, that I would be in good hands with Abidin because of his affiliation with Johns Hopkins.

This was the same surgeon who, on the last of a half dozen office visits, handed me another patient’s file to take to check out. It was the file he’d been referring to during our brief visit. Abidin never addressed me by my name, nor identified the disease-causing pathogen(s).

Apparently, Dr. Desman is good buddies with both of my former otolaryngologists, “Mike and Larry” (Dr. Laurence O’Halloran).

Dr. Desman never mentioned the letter recommending HBOT from my primary care physician, Dr. Norman Levin. Instead, he called one of my former infectious diseases physicians, Dr. Richard Sall, who had prescribed a few months of penicillin VK 500 mg oral tabs the year prior for actinomycosis. And he called Dr. Abidin. Desman was hoping they would remember me and fill him in on the details of my ailment so he wouldn’t have to read any of my paperwork.

He said he’d caught them both between patients and neither recalled who I was, but that Dr. Abidin had agreed to do the biopsy anyway.

Do you really think Dr. Desman knew he was asking Dr. Abidin to take a chunk out of my neck? And did Dr. Abidin really understand that he’d agreed to do that? Of course not. Doctors like to think of themselves as omniscient, but they rarely are. They’re oriented toward what they typically do on a daily basis, which is geared to dealing with aerobic bacterial infections.

Dr. Desman told me that in the 25 year history of the Mount Vernon Hospital Wound Healing Center, there were two or three patients with actinomycosis who received HBOT as an adjunct to conventional therapy. These were patients of Dr. John Symington, an infectious diseases doctor who specializes in treating patients with Methicillin-resistant Staphylococcus aureus (MRSA), a bacterial infection highly resistant to some antibiotics.

It appeared most of the patients undergoing HBOT here were treating open wounds and (MRSA) infection. This was news to me since I understood oxygen only killed anaerobic bacteria — not aerobic MRSA infection. I began rethinking whether this environment was such a good venue for me in my autoimmune-compromised (petri-dish) state.

I later stumbled upon some articles about the turf wars between microbiologists and practicing wound care physicians over biopsies. Apparently, microbiologists have known for some time that not only do anaerobic infections have aerobic co-infections, but aerobic infections have anaerobic co-infections. The microbiologists argued that for proper patient wound care, practicing physicians needed to do two biopsies – one surface biopsy for aerobic pathogens and a deeper biopsy for anaerobic infection.

The community of practicing physicians felt this was unnecessary. One article gave the distinct impression that the reticence on the part of the practicing physicians to do anaerobic biopsies was based more on resistance to what was being viewed as territorial trespassing than on good science — turf wars.

Makes me wonder how many of the MRSA infected patients receiving HBOT had anaerobic bacterial biopsies before being treated. My money’s on “not many, if any.” A bit of a disparity in treatment protocol, don’t you think?

The Story #13: The Diagnosis Part II

2010-08-16T06:13:00.008+01:00

The diagnosis and treatment of anaerobic bacterial infections seems to be off the radar screens of all doctors except research medical doctors, who aren’t licensed to treat patients.

Of the many physicians I saw about my actinomycosis, only one had any familiarity at all with the disease. The list of doctors I consulted about this infection in recent years included four infectious diseases doctors, two otolaryngologists, four dentists, three endodontists, four oral surgeons, three colorectal surgeons, three gastroenterologists, three gynecologists, one gynecological oncologist and five internists – all of which are believed by mainstream medicine to be able to diagnose actinomycosis. This list doesn’t include other specialists and family doctors I consulted over a lifetime of being plagued with the disease.

Medical researchers concluded that early undiagnosed occurrences of the disease go into remission with the use of short courses of antibiotics prescribed for suspected bacterial infection only to recur in later years – typically during middle-age once the body’s defenses have weakened. They found a clinical pattern of remission and exacerbation of symptoms occurring in parallel sequence with initiation and cessation of standard antibiotic therapy.

I found a clinical pattern of doctors’ increasing frustration leading to diagnoses of anxiety and prescriptions for antidepressants when patients return after the previously prescribed antibiotics failed to resolve symptoms long term. And this wasn’t just happening to me.

With no non-profits or other organization to help patients get help with anaerobic bacterial infections, I started an actinomycosis support forum on http://www.mdjunction.com in the fall of 2008. I wanted to see if there were others out there encountering the same difficulty that I was in finding competent medical care for this infection. There were — not only in the U.S, but also in England and Norway as well.

Diagnosis of a case of actinomycosis in England in 2008 made headline news because the disease was largely thought to have been eradicated from developed nations with the invention of penicillin. Dr. John Jacklin and Dr. Syed Tariq diagnosed Mrs. Christine Wicks of Long Sutton as suffering from actinomycosis — a diagnosis that eluded the numerous doctors Wicks saw over two decades. To help raise public awareness of the disease and establish a support forum for other sufferers, Google in conjunction with Queen Elizabeth Hospital in King’s Lynn, Norfolk set up an “actinomycosis group” within Google Groups.

Here we learned that within four months of stopping several months of intravenous antibiotics her husband administered in their home, Mrs. Wicks’ infection was back with a vengeance. Some felt that failing to follow the IV treatment with six to 12 months of oral antibiotics caused the infection to return. Others felt that because her infection had gone on for so long before being diagnosed, she had developed complicating factors. There was really no consensus on the issue.

Mrs. Wicks had heard reports of hyperbaric oxygen therapy being successful in eradicating anaerobic infections. So she pursued the possibility that the NHS would cover such therapy for her actinomycosis.

The requisite approval process took months and included surgical removal of a noticeable part of her neck to obtain a biopsy sample large enough to encapsulate pathogens that die immediately upon being exposed to oxygen in the air. Pathologists needed the biopsy to confirm that Wicks still had the infection and that the obvious lumps in her neck weren’t being caused by something else. Wicks said the biopsy left a hole in her neck and caused her so many problems that she wished she’d forgone trying to get approved for additional therapy. (Actinomycosis experts know that traumatic disruption of mucosa — cutting flesh — causes the infection to spread.)

Once approved, Wicks started hyperbaric oxygen treatments in the hopes that this treatment regime would help. She underwent 12 of the 40 two-hour hyperbaric oxygen therapy sessions prescribed before she was again hospitalized, this time with an e-coli kidney and urinary tract infection. The actinomycosis infection eventually spread to her lungs, which precluded her from continuing the hyperbaric oxygen treatments.

When she was diagnosed two years ago, Wicks, now 67, knew she’d never be cured. She told reporters then that it was just such a relief to finally understand what had been happening to her body the past 20 years and to have found a doctor with the patience to listen and find out what was really wrong. Like so many others with undiagnosed illnesses, Wicks endured multiple encounters with doctors who told her she was making up symptoms and needed psychiatric help.

She first visited her doctor in 1988 with persistent sore throats and ear pain. As the pain worsened and symptoms spread to other parts of her body, dozens of internists and specialists indicated everything from tonsillitis and strokes to multiple sclerosis and smoking as the cause of her health problems, even though she has never smoked.

Asked why so many doctors failed to correctly diagnose Mrs. Wicks, Dr. Syed Tariq surmised it was because anaerobic bacteria dies when it comes into contact with air or more specifically, oxygen.

Because the clinical presentation of anaerobic bacterial infection is non-specific (lacking specific symptoms upon which to pin a diagnosis), definitive diagnosis is generally based on the pathologist’s identification of actinomycotic granules from a biopsy or tissue specimen. Such biopsies are difficult to master because special precautions must be taken to prevent the pathogen from coming into contact with any oxygen. Special pre-reduced anaerobically sterilized (PRAS) transport media and non-typical stains (ie. Grocott-Gomori methenamine-silver nitrate, Brown-Brenn, McCallen-Goodpasture) must be used with specimens.

Because lab technicians do not typically use these materials, pathologists need to be notified in advance that the specimen contains anaerobic bacteria. Since exposure to an aerobic environment may compromise biopsy specimens, prompt transport of specimens (in an anaerobic transport device) to the microbiology lab is necessary for isolation of the anaerobic pathogen. Cultures, if done, can take up to two weeks to grow, which is more time than the few days labs typically allow for bacterial cultures.

The Merck Manual notes that fine needle aspiration is often used to obtain a sample of tissue deep enough to be infected with Actinomyces because surface mucosa typically carries only aerobic bacteria. It further states that computed tomography or ultrasonography are often employed to guide the needle to the infected area because it is essential that the tissue sample be representative of the infection core as peripheral tissue may not yield the bacterium.

Research indicates that not many practicing surgeons take the time or go through the inconvenience of fine needle aspiration biopsy to detect an anaerobic infection. Using this technique can often take as many as three tries or more before a successful specimen is captured.

This is why most surgeons prefer to remove entire organs (ie: hysterectomy) to obtain a proper biopsy. Or as Dr. Norman Tacktill put it,

“Typical tissue biopsy is like playing the mechanical “claw” game” in which the operator of a toy crane fishes for toys and prizes. “More often than not,” Tacktill said, “he comes up empty handed.”

As a practical matter, actinomycotic specimens are typically discovered by pathologists anecdotal to surgery performed for some other suspected condition. Consider the challenge in convincing insurance companies to pre-approve the expense for what amounts to exploratory surgery to obtain the evidence that the patient has the suspected anaerobic bacterial infection. In advanced cases of persistent actinomycosis, radiographic studies such as CT scanning and MRI are useful in detecting osseous (bone) and soft tissue involvement. But isn’t the point to try to diagnose the infection early enough for treatment to be effective?

With this many hurdles, it’s understandable why so many practicing physicians would choose to pretend anaerobic infections don’t exist or that such diagnosis is the responsibility of some other physician. In truth, the pervasive aspect of the infection makes it most doctors’ responsibility to diagnose and treat. Unfortunately, when everyone is responsible, no one is responsible. So you end up with scenarios like the following that happened to me.

I was having so much difficulty finding a practicing physician in the U.S. who knew anything about actinomycosis, that in December 2008, I wrote Nancy Davenport-Ennis, who was the chief executive officer of the National Patient Advocate Foundation (PAF). She asked one of her supervisors, Mary Giguere, to seek out a local infectious diseases doctor, who was familiar with actinomycosis. She had quite a time locating one.

When I called the offices of various specialists as a patient to inquire if a doctor had specific knowledge about diagnosing and treating actinomycosis, the administrative personnel instructed me to make an appointment. They had no way of knowing the doctors’ sub-specialties without specifically asking the doctors, which they weren’t about to do. Giguere had the slight advantage of stating that she was asking about a specialist’s typically unadvertised sub-specialty on behalf of the PAF.

Actually, I’m not sure whether Giguere’s affiliation with PAF pulled much weight or whether she was lucky enough to reach an office in which the assistant was related to a doctor and therefore was not afraid to ask if he knew anything about actinomycosis. In any case, Giguere was successful in locating a physician with at least some familiarity with the infection. For this, I shall be forever grateful because I know that non-profits shy away from recommending specific doctors to patients, and policy-wise, the PAF was no exception.

In 2009, based on the evidence I provided, Dr. Richard Sall of Infectious Diseases Specialists of Virginia LLC prescribed four months of oral Penicillin VK (500 mg) to treat my actinomycosis. Instructions were to take four tablets a day. At a follow up visit, I told him that I was experiencing terrible heartburn from taking just one to three tablets of Pen VK each day and reminded him of my history of gastrointestinal problems, which included erosive esophagitis, reflux, hiatal hernia, H. pylori infection, ulcerations and colitis.

Still believing conventional thought that treatment consisted of high doses of penicillin, I asked Dr. Sall about the potential of getting IV antibiotic therapy. I knew I needed gastrointestinal surgery and was worried that without such treatment, the actinomycosis would spread as it’s known to do with traumatic disruption of mucosa. (I found from experience and from other patients that surgeons tend to feel that infections resolve themselves after surgery or that an infectious diseases specialist is responsible for prescribing antibiotic therapy.)

The request was problematic for Dr. Sall for a couple of reasons. First, Dr. Sall wasn’t certain that around the clock home administration of IV therapy was feasible. Second, he wanted an updated pathology report showing the presence of actinomycotic granules. The pathology report I had supplied from the tonsillectomy in 2001 was now several years old.

I told him I was having a consult with colorectal surgeon, Dr. Donald Colvin of Fairfax Colon & Rectal Surgery, P.C. and could arrange for a biopsy to be done during my upcoming colonoscopy. This, too, proved to be problematic.

In a brief telephone conversation prior to our initial consult, Dr. Colvin made clear that he was not familiar with actinomycosis and recommended that I seek treatment for the infection from an infectious diseases specialist. Nonetheless, he agreed to do the biopsy.

At our initial consult on August 5, 2009, I gave Dr. Colvin the contact information for Dr. Thomas Russo, a research doctor in the Division of Infectious Diseases at the University of Buffalo School of Medicine. Dr. Russo wrote a section on actinomycosis in Mandell’s Principles and Practices of Infectious Diseases. Dr. Russo responded to my e-mail inquiry saying he would readily speak with a practicing physician about the nuances surrounding actinomycosis, but could not speak directly with me because, as a research doctor, he was not licensed to diagnose and treat patients. From what I’d read, it seemed important to know the particulars about biopsying for a specimen so sensitive to oxygen.

At the follow-up visit following my colonoscopy in September, I was surprised to learn that the pathologist found absolutely no bacteria whatsoever in my colon. Medical researchers reported finding upwards of 480 species of bacteria in the typical human colon. I learned that multiple surface mucosal biopsies were taken, placed in formalin and sent to the lab as usual. It never dawned on me that it was not possible during a colonoscopy to obtain a tissue sample deep enough to contain anaerobic bacteria. Doing so would certainly result in colon perforation. I also hadn’t counted on the fact that the harsh colon prep would remove all flora from the surface layer of the colon from which, I learned, colonoscopy biopsies are typically obtained.

Dr. Colvin’s failure to consult an expert in the disease and frustration over my questioning the procedure is reflected in his notes of September 21, 2009 in which he concludes the patient “is still pretty convinced that she has systemic actinomycosis as the cause of all of her problems.”

There was an obvious disconnect here. I assumed the surgeon would obtain needed information and perform the anaerobic bacterial biopsy correctly. He assumed that proceeding as usual was all that was required to obtain a proper biopsy for detecting actinomycotic infection.

Once a common disorder, actinomycosis is now said to occur in 1 of 300,000 cases. Some postulate that the occurrence is much higher, but that the disease is either misdiagnosed or goes undiagnosed.

The Doctor Parent Trap

2010-05-19T03:44:00.001+01:00

I wish someone would loan me a book about how grown kids are supposed to interact with their parents. I have books on parenting which talk about how parents are supposed to interact with their kids. But I need advice on how to handle conversations based on the parent’s assumption of how things are supposed to work in an ideal world.

I’m no kid. I’m 55. But I often feel like I’m 17 when doctors try to explain to me why it’s okay for them to assume that I don’t have such-and-such condition rather than test for the condition. If I had something, they assume some other doctor would have already diagnosed it.

“I’d like to have a Prometheus test to determine if I have ulcerative colitis or Crohn’s disease,” I say.

“Oh, the colorectal surgeons would have already diagnosed you during surgery if you did,” the doctor says.

“When I was at my surgery follow up visit, I asked one of my colorectal surgeons if she could determine during surgery if I had an inflammatory bowel disease. She said that was not her specialty, and she referred me to another gastroenterologist.”

I continued. “I don’t know if she said this because there’s some actual or unwritten law that forbids doctors from crossing certain territorial lines…I just know doctors have been reticent to address any topic remotely outside of their specialty’s seemingly very narrow parameters.”

“Look,” the doctor said, “surgeons don’t work like horses with blinders on strictly honing in on the narrow aspect of the organ they’re operating on. They get their hands in there and feel around for any abnormalities. If they find something in an organ they don’t think looks right that’s outside of their expertise, they ask the appropriate specialist to take a look before they close up. It’s not unusual at all for different specialists to treat a patient simultaneously if another condition is discovered during surgery.”

This I knew was true based on my mom’s experience. During a routine hysterectomy, surgeons found a tumor on her kidney that turned out to be renal cell carcinoma. She was being treated by gynecologists, nephrologists, cardiologists and oncologists. She died shortly thereafter.

What I didn’t know was how the “feeling around” scenario applied to laparoscopic surgery — not hand assisted laparoscopic surgery, but three-tiny-incisions, hands-free laparoscopic surgery.

“Are you a surgeon?” I asked the gastroenterologist.

“No, but in medical school, we assisted in surgeries and saw how things worked,” he responded.

The question “What year was that?” sprang into mind but I didn’t say it. I didn’t say anything. I felt it would be disrespectful to bring up laparoscopy. I wanted the Prometheus test, a fairly new test used to diagnose Crohn’s disease and ulcerative colitis, but I didn’t want to broach any subject that might lead to the doctor’s losing face. I suspected this gastroenterologist hadn’t ever heard of the test.

Plus there was the added concern that this was someone my internist had referred — a friend he’d known for years — and I have high regard for my current internist. It took me years to find him, so I wasn’t about to do anything stupid to skew that relationship.

Since home schooling about all things medical, I’ve been profoundly fascinated at the medical advancements I discovered — surgical advancements and the slew of new tests that doctors in day-to-day practice rarely order.

I found that doctors typically don’t mention to their patients any tests that insurances typically don’t cover. I can only assume they must have surmised that if the insurance doesn’t pay for something, there’s no reason to learn about it. Some doctors even admit that they don’t test for things that they believe they can’t treat or do anything about.

What audacity I think when I hear such statements. What about testing just to inform the patient of a condition that the patient can improve by implementing lifestyle changes or by taking non-prescription supplements? Do these doctors assume that all patients are set in their ways, so why bother? Is the office visit about what that particular doctor knows or what he can help the patient with? Is the doctor’s ego worth more than the patient’s life or quality of life? And who has the right to make that judgment?

I know there’s no cure for inflammatory diseases as well as many other conditions. In fact, much of the prescription medication available only addresses some symptoms while creating other health problems. Still, it would be nice to have a proper diagnosis — one way or the other — for the patient’s peace of mind, if nothing else.

But rather than get into an argument or further discussion with the time-constrained doctor, I sat there feigning acquiescence like a child. I felt the way I’d felt previously in parent-child situations — like it was futile to try to persuade the unconvincable. It makes me think I’d be a terrible debate team member.

So why did I submit to “child” mode so readily?

It’s no secret that many doctors view their patients as children. As a real estate broker, I sometimes felt similarly about the tenants I placed because they needed my help. I felt like a mom to my pets. Yet I doubt this viewpoint lends itself to a healthy relationship — one open to honest discourse and mutual trust. Better to face each other as compassionate adults with open minds. I just don’t know how to get there.

Healthcare Omens: What GM, Toyota and Big Banks Taught Us

2010-05-08T02:47:00.000+01:00

When I listen to news accounts of businesses gone bad, a common theme emerges among the reasons given for their downfall. Monetary reward motivated people to act as they did.

And while hindsight is 20/20, a closer look into what blinded those in charge — those who should have had foresight — is strikingly revealing. It begs the question of whether other industries, including health care, are susceptible to the same fate that befell some of the world’s most highly regarded enterprises, including Goldman Sachs, JP Morgan, AIG, Washington Mutual, General Motors and Toyota.

For example, in 1984, General Motors (GM) and Toyota formed a joint venture that converted one of GM’s worst auto plants in the U.S. into one that produced some of its best cars thanks to lessons learned from the Toyota production system. Toyota shared with GM the secrets of how it made higher quality cars at much lower costs than the American conglomerate.

GM ultimately found shifting American cultural mores difficult, if not impossible, and failed to implement what it learned across the company. As a result, GM filed bankruptcy and closed the Fremont, California automobile manufacturing plant on March 31, 2010, sending thousands of auto workers looking for jobs. Adding insult to injury, GM along with other U.S. auto manufacturers appealed to Congress for funds, and taxpayers paid $50 billion to bail them out.

In the end, instead of learning from Toyota, GM influenced the Japanese company’s American counterpart to adopt GM growth strategies emphasizing quantity over quality. This ultimately led to Toyota’s apology of deeply regretting the harm caused by accidents that occurred as a result of a faulty product.

A March 26th, 2010 airing of This American Life revealed some very interesting reasons for GM’s inability to regain market share or implement the practices Toyota shared.

The pioneering venture between GM and Toyota seemed a perfect match. GM needed to manufacture a small, reliable car profitably, and Toyota needed to start building cars in the U.S. to avoid possible import restrictions. Yet, senior leaders at GM were nonplussed at the arrangement — maybe they’d learn something, maybe not. Pride and defensiveness were prominent in their attitude. After all, in its heyday GM had been the biggest and best auto maker in the world.

Cultural and legal considerations made implementing the Japanese auto workers’ way challenging. In Japan, auto workers and management worked together to achieve continuous improvement, a philosophy known as kaizen. In this teamwork-based approach, all line personnel were expected to stop their moving production line in case of any abnormality and, along with their supervisor, suggest an improvement to resolve any challenges.

In America, labor relations seemed at constant battle with management. Auto workers were yelled at for falling behind. Keeping the line moving was sacrosanct. With no backing from management when problems occurred, GM workers were encouraged to let things slide on down the line. If something needed to be fixed, the thinking was some other workers would get to it later in the yard once the car was completely assembled.

In effect, the Japanese turned the Henry Ford assembly line concept of volume production on its head in putting quality before quantity. The last thing Toyota wanted was a lot of defective cars to repair later.

Employing the Toyota production system in the U.S. necessitated a radical change in the relationship between labor and management.

GM and Toyota managed to accomplish this near miracle in a pilot program at the New United Motor Manufacturing, Inc. (NUMMI), an automobile manufacturing plant in Fremont, California.

The choice of the Fremont plant and its workers was unusual. The factory which NUMMI took over was built and operated by GM from 1962 until its closure in 1982. According to the United Auto Workers, at the time it closed, the plant’s workers were “considered the worst workforce in the automobile industry in the United States.” Employees drank alcohol and got high on the job, had frequent absences, and even committed petty acts of sabotage. Yet in spite of the history and reputation, when NUMMI reopened the factory for production in 1984, most of the troublesome GM workforce was rehired. Some went to Japan to learn the Toyota production system.

It didn’t take long for the NUMMI factory to start producing cars with as few defects per 100 vehicles as those produced in Japan. Workers began feeling like they were making a difference in their jobs. But 15 years later, GM still hadn’t been able to replicate this manufacturing approach at the rest of the company’s plants in the U.S. Why not?

Simply, there were too many people at GM convinced that they didn’t have to change. Many union members saw the Toyota plan as a threat because it required a quarter fewer workers. Many felt the team concept hurt their seniority rights. Instead of “team players” seeking to solve a common problem, team members started to snitch on other members’ mistakes and gang up on those viewed as a weak link.

But most of all, GM managers didn’t want the line to stop because their bonuses were still based on the number of cars produced — defective or not.

Similar production-based compensation schemes led to our scandalous subprime-mortgage crisis. Monetary reward incited lending practices in which credit evaluations took a back seat to approving as many loans as possible.

Senator Carl Levin summed up some of the problems within the banking community in the hearing looking into the collapse of Washington Mutual. He said, “To keep the conveyor belt running and feed the securitization machine on Wall Street, Washington Mutual engaged in lending practices that created a mortgage time bomb…WaMu built its conveyor belt of toxic mortgages to feed Wall Street’s appetite for mortgage-backed securities. Because volume and speed were king, loan quality fell by the wayside, and WaMu churned out more and more loans that were high risk and poor quality.”

Other firms capitalized on the fact that bankers were incentivized to do transactions for the upfront fees. They knew no one was watching out for the investors. So hedge funds, like Magnetar, collaborated with Wall Street banks to create very toxic securities explicitly so that they could make money by betting that these securities would tank.

A system designed to help homeowners achieve the American Dream of homeownership transitioned into a casino game for monetary reward. The more money pocketed, the more those incentivized to gamble became blind and deaf to the risks.

I ask, are doctors and others involved in medical care (insurers, pharmaceutical companies, etc.) so different from bankers? The incentive systems all favor short term profits over quality care. Insurers reimburse doctors for the number of patient visits, not patient outcomes. Doctors are paid for doing tests and procedures, not for the time it takes to properly diagnose a patient.

As a result, too many patients run through a gauntlet of doctors in an epic quest to get healthy to no avail. Too many doctors do little to actually help their patients get well or find the cause of their illness. Medicine has become impersonal. It’s an assembly line that can’t be stopped. Problems get sent down the line from specialist to specialist, and none seem to be responsible for ultimately diagnosing or treating the patient.

When reliability and commitment to quality start being assumed more than ensured, mistakes will follow whether we’re talking about producing cars, making loans or delivering proper health care. Has health care become the same profoundly dangerous system of beliefs and incentives cooked up over decades with the active participation of the people who were supposed to oversee and regulate?

State Insurance Regulation Conundrums

2009-12-06T00:20:00.005Z

This week I ended up calling the Virginia Bureau of Insurance regarding the difficulty I was having finding an insurance company that would sell Medicare Supplement Insurance or a Medigap policy for disabled persons under age 65 in Virginia. (While finding a Medigap policy is fairly easy for seniors age 65 and over, the availability of such policies is restrictive for Medicare recipients under age 65.)

I had already contacted three of the four companies allegedly offering such policies which were listed in the Center for Medicare & Medicaid Services’ 2009 “Choosing a Medigap Policy,” a guide to health insurance for people with Medicare coverage. Of the four companies licensed to sell such policies to those under age 65 in Virginia, I found that only three actually sell these Medigap policies, and one of the three listed required the insured to be a member of the Mennonite religious sect.

I found that left United American and Blue Cross/Blue Shield as the only companies offering Medigap policies to the disabled under 65 in Virginia who weren’t Mennonite. Even though Golden Rule Insurance Company is listed twice in the guide, the company has stopped selling such policies.

When I reported this to Charles Fisk at the Virginia Bureau of Insurance, he explained that the booklet lists those insurance companies who are licensed to sell the referenced insurance in Virginia — not companies actually selling the insurance.

I took the opportunity of our phone call to also inquire about filing a complaint against Cigna HealthCare for failing to document and acknowledge my repeated written and verbal complaints regarding its providers’ failure to diagnose and treat me.

I became disabled unnecessarily because untreated infections spread to my spine causing degeneration while Cigna’s providers each delegated responsibility for my care to other Cigna providers. To me, this behavior does not constitute the “quality care” members are promised upon enrollment and, in my humble opinion, constitutes, at the least, false advertising. Code of Virginia Title 38.2-502 states that no person shall make, issue, circulate or knowingly allow to be made a sales presentation that misrepresents the benefits, advantages, conditions or terms of any insurance policy.

In Virginia, Managed Care Health Insurance Plans (MCHIPs) are required by law to have internal grievance procedures for their members, and that procedure must be explained in the contract or evidence of coverage. For Cigna members, the complaint procedure starts and ends with a call to Member Services, whose reps revealed to me that there was no space in their computer program to enter grievances and that there was no mailing address to which I could send a written complaint. The fact that Cigna chronically ignores the complaints of its members is borne out by the numerous fines other state insurance bureaus lodged against Cigna for failing to respond to member complaints time and again.

Mr. Fisk was most cordial over the phone and responded to my questions and concerns in a manner that indicated to me that he was empathetic with my dilemma. As he laid forth the quagmire of various state statutes covering insurance companies, it became clear to me that my dilemma mirrored the Virginia Bureau of Insurance’s own impotency or inability to take any action on behalf of the insured against insurance companies.

First, he asked if my complaint was against an insurance company or against the providers? “Both,” I responded, then clarified that my complaint here was specifically against Cigna for failing to have the complaint process in place which Virginia law requires.

He then asked if the policy was self-funded by my employer. (Self-funded plans are subject to their own set of laws.) He then speculated that my policy was regulated by the laws of the state in which Cigna was headquartered, Pennsylvania. Or, if my employer was headquartered in another state, say California, the laws of that state would regulate the master group policy issued. If my policy came under the jurisdiction of any of these other states, the only thing the Virginia Bureau of Insurance could do was to direct me to the insurance commission of that other state.

When I told him that I took out an individual policy with Cigna in Virginia after my Cobra coverage ended, he pointed out that most policies require that complaints be handled within 180 days of an incident and that too much time had passed to do anything in my situation. That means that if Cigna or any insurer ignores a complaint for six months, the insured is screwed because the states regulate insurance companies.

To the outside observer, it might have seemed Mr. Fisk was programmed to come up with any excuse to dissuade a complainant from filing a complaint against an insurer with the Virginia Bureau of Insurance. Yet I could tell from his demeanor that he was just being matter-of-fact about how totally helpless the Bureau actually is against insurers because of the state laws the insurers themselves fought Congress for.

In the way of background information, the insurance industry enjoyed relative freedom from interference by the federal government until 1944. In that year, the U.S. Supreme Court handed down the decision of United States v. South-Eastern Underwriters Ass’n. In that case, an association of 200 fire insurance companies and 27 individuals were indicted under Section 1 of the Sherman Anti-Trust Act for fixing non-competitive rates and Section 2 for monopolization. The issue was whether the federal Congress should be deprived of the power to regulate the industry under the Sherman Act, and the court held that insurance transactions were subject to federal regulation under the Commerce Clause.

Following the South-Eastern Underwriters case, the National Association of Insurance Commissioners (NAIC) proposed legislation to limit its impact and secure the state form of regulation under which it had operated. The result was the McCarran-Ferguson Act. The Supreme Court subsequently found that Congress’ purpose was brought broadly to give support to the existing and future state systems for regulating and taxing the business of insurance.

Legislation is currently pending to repeal or modify portions of the McCarran-Ferguson Act for the purposes of bringing the insurance industry under more pervasive federal regulation. On February 15, 2007, the U.S. Senate introduced a proposed amendment to the McCarran-Ferguson Act entitled The Insurance Industry Competition Act of 2007, S.618. On that same date a proposed bill with the same name was introduced in the House as H.R. 1081. Both proposals seek to provide for federal regulation of unfair methods of competition by placing them under the auspices of the Federal Trade Commission Act and the Department of Justice.

To date, both bills remain in committee.

In January 2010, House Democrats are again attempting to get a provision repealing the antitrust exemption afforded to healthcare and medical liability insurers in the health care reform legislation. Some House Democrats are concerned that removing the “public option” removed an obvious cost-cutting incentive, so they’re trying to level the playing field by repealing the antitrust exemption.

A letter circulated to the offices of all House Democrats by Rep. Peter DeFazio, D-Oregon, and Rep. Gene Taylor, D-Mississippi, insists that as part of any compromise there should be a provision in the antitrust language giving the Federal Trade Commission the authority to collaborate with the U.S. Department of Justice in investigating the insurance industry by permitting the FTC to investigate health insurers and medical malpractice insurers.

The letter noted that since 1945 when the McCarran-Ferguson Act was enacted “regulation of the insurance industry has since been left largely to the states, which suffer from a lack of resources to go after offenders, as well as a patchwork of 50 different state regulatory regimes with inconsistent enforcement.”

An October Rassmussen poll found that 65 percent of Americans favored removing the antitrust exemption for health insurance companies. The letter also noted that 64 percent of independent voters and 58 percent of Republicans also feel insurers should abide by the same rules as every other company in America.

It’s certainly a provision worth consideration given that Blue Cross/Blue Shield charges $700 per month for Medicare Supplement Insurance to Virginia disabled Medicare recipients under 65 to cover the 20% of health care costs Medicare doesn’t cover. Medicare charges Part B recipients less than $100 per month for its 80% coverage.

Reflections on Virginia's Election Results

2009-11-05T03:25:00.002Z

Democrats are licking their wounds after Republicans won the top three posts for governor, lieutenant governor and attorney general by an overwhelming margin in this past Tuesday's election in Virginia. Bob McDonnell won the governorship with 59% of the vote to Creigh Deeds' 41%. What happened? Republicans showed up, and Democrats stayed home.

Cursory examination of the electorate reveals that nearly half of the 3.8 million voters in Virginia last year didn't show this go round. Those who did show were disproportionately Republican voters.

Young voters comprised only 10% of this year's electorate compared with 21% a year ago. And the proportion of the electorate made up of African Americans dropped this year from 20% to 16%.

The question is "Is this trend likely to carry through in the non-presidential electorate in 2010?"

It's easy to chalk up this year's election results to off-year elections, which are often low turnout and tend to be anti-incumbent if the economy is bad. Some postulate the Democrats' loss was tied to public unrest over President Barack Obama's performance to date and Congressional "politics as usual" maneuverings. If you ask me, this sounds like "It's not about me, if I lose" rationalization.

It's about time the Democrats in Virginia take a cold, hard look at what compelled voters to turn out for Obama last year and take a lesson from his playbook. Marginal voters showed up for Obama because, for once, they felt like someone cared about their issues. He gave them hope that, having seen firsthand some of the strife many Americans encounter daily, someone would take their concerns seriously. There was a connection that compelled these voters into action.

Based upon my personal interactions with staff of my four state and federal Democratic elected officials, there is no connection. In fact, conversations left me feeling like we were living on two separate planets. And for those of us, who like me, are now disabled living on social security disability payments and are unable to fork over the thousands of dollars I assume it would take in campaign contributions to get five minutes of face time with my elected representative, staff represent the frontline. Staffs reflect politicians' views and demeanor to their constituencies.

Let me relay just one example of such interaction to illustrate my point. It involves a conversation that occurred in late October with Donna Kloch, a case worker in the Office of Congressman Jim Moran.

Kloch sent me an e-mail on October 19, 2009 in response to my correspondence to Congressman Moran sent quite some time ago. I'd written regarding my dysfunctional experiences with my medical insurer and doctors that left me disabled unnecessarily. In hindsight, I can see the e-mail was nothing more than another referral -- this time to the Virginia Bureau of Insurance in Richmond. But when I received it, I was elated at just being acknowledged by anyone in Moran's office. Plus she asked me to give her a call to discuss the matter.

As it goes, health insurance companies were exempted from antitrust laws with the adoption of the McCarran-Ferguson Act of 1945, which allows for state but not federal regulation of medical insurers. Currently, there is bipartisan support in Congress to move such regulation authority back to the feds. For some unknown reason, I thought she wanted to hear about my experiences with the Virginia Insurance Commission to use as an example in determining whether the Congressman should support such legislation.

Being chronically ill with major brain fog, it takes me longer than most are willing to wait to verbalize my thoughts. So I e-mailed her my thoughts on and experience with attempting to file a complaint against Cigna HealthCare with the Virginia Bureau of Insurance.

I told her that I started to file a complaint but wasn't sure which of the two forms on the Bureau's website to use even after reading the instructions for filing a complaint. When I called the Bureau for direction, whoever answered the phone (allegedly the only person I could speak with) kept repeating that such determination could not be made without seeing the complaint in writing submitted with copies of all relevant materials and correspondence.

My complaint is that Cigna ignored multiple complaints I made against several of its providers for failing to diagnose and treat me -- a violation of the tenets Cigna espouses in its Code of Ethics and Compliance, which is referenced in materials given to its members and in Cigna's SEC filings. Cigna's Code includes a Patient's Bill of Rights that declares its members have a right to be heard and receive quality medical care. Cigna executives and board members are obligated to oversee that their employees are following its policies and procedures in line with its Patient Bill of Rights.

To be heard, Cigna members are instructed to call Member Services (customer care) at the toll-free phone number on the Cigna HealthCare ID card. If Member Services cannot resolve the member's concerns, care reps are supposed to provide information about how to have the member's concerns addressed.

Yet, on several occasions, Cigna Member Services refused to take seriously my complaints about the lack of quality provider care or provide me with an alternative method of complaint. Cigna's customer care reps told me that Cigna's computer system could not accommodate recordation of complaints, and that there was no address where my complaints could be mailed or other persons to whom I could voice my complaint.

A quick internet search revealed numerous incidents in which some state insurance commissions had imposed fines on Cigna and other medical insurers for repeatedly neglecting consumer complaints. Virginia's Bureau of Insurance was not among them. In fact, Kloch commented that she was not aware that Virginia's insurance commission had ever taken action against a medical insurer.

My e-mail to Kloch included specific dates and names of Cigna representatives I contacted in my effort to attain competent medical care. It also reflected on the reasons I ultimately decided not to file a complaint with the insurance bureau. Paramount among the reasons is Virginia's reputation as the #1 pro-business state in the nation and the potentially detrimental toll that the emotional stress of having to recall my experiences would have on my already diminished health status.

In our phone conversation, Kloch suggested that I contact my state representatives for assistance since medical insurers were regulated by the state and not the federal government, so Moran's office could not help me. I told her that I had already contacted the offices of my state representatives, Mary Margaret Whipple and Adam Ebbin, not about the state insurance bureau but about my inability to find a doctor who would do more than refer me to other specialists and about the insurer's total disregard for its member's plight.

Kloch wanted to know how they responded. I said their assistants told me to "hire an attorney" because elected officials don't get involved in personal matters. I said I didn't think my message ever actually made it to the state senator and delegate. "Why would you think that?" she asked, then assured me that my inquiry most certainly would have been addressed by the elected representatives themselves.

While she said she was trying to help me, it soon became clear that her definition of help amounted to the same level of help I received from doctors -- a dead-end referral -- often to someone or some entity I'd previously contacted. The demeanor of the phone conversation conjured up the image of Virginia's legislators standing shoulder to shoulder in a circle -- each pointing to the guy on the right. I felt like little more than a morsel weighing down someone's plate -- a crumb easily wiped away to give someone the illusion they were competent and efficient.

Kloch was under the impression that it was easy for the injured to retain a medical malpractice attorney on a contingency basis, which to her, implied that no upfront cash outlay was required. She didn't believe me when I told her that, in all medical malpractice cases, win or lose, the injured party is responsible for paying the expenses of the case. (Rule 1.8(e) of the Virginia Rules of Professional Responsibility for Attorneys.) By contacting several such attorneys, I found that the expenses for witnesses, medical records, review fees, photocopying, postage and the like can range from $25,000 to $40,000 and up. I also found that the injured's ability to pay for expenses upfront is the paramount criterion used by attorneys to determine whether to take a case.

To me, suggesting to someone that he or she hire an attorney after the person just relayed his plight of becoming destitute and disabled, having spent all his resources fruitlessly seeking competent medical care, is a bit ludicrous. Yet, Kloch and others I contacted were not newcomers to politics or the issues. The dichotomy I felt seemed to stem from one party's inability to comprehend what the other was going through. There was no frame of reference, and this frustrated the politicians' aides. They couldn't understand why I wasn't grateful for their referrals.

At one point in our conversation, I broke down and started crying. I was trying to explain what it was like being chronically ill and disabled, taking ten times longer to accomplish anything... "Can you imagine what it is like to do your job with a bad flu that never goes away?" I asked. "No, I can't," Kloch responded empathetically. "You need to get some help."

I could feel my stomach tense anticipating the direction of the conversation -- deflecting away from the larger issue about health care dysfunction and medical insurers' disregard to my personal need to reach out to family and friends for help with daily living activities. My reaction brought to light how sensitive I remained to my orphan-like status, the daughter of deceased immigrants, whose European and South American relatives I've never met, and who don't speak English. I felt how sensitive I remained at how insensitive others can be at someone's not having accessible family, or family in a position to help -- not that they should be so burdened.

Friends? In mid and later life, friends have their own families and problems. Plus there's a predominant ingrained societal belief in doctors' infallibility, particularly among those who haven't experienced chronic illness firsthand. It's unfathomable for most to believe that multiple doctors wouldn't diagnose and treat a paying patient. Patients who, at a glance, don't appear to be in distress are characterized as mentally unstable and prime candidates for antipsychotics.

My neighbors are caring, good hearted people who've offered to help in any way they can. They referred me to their doctors, helped me with chores and offered moral and spiritual support for which I am most grateful. But these people aren't political insiders who know how to work the system to affect change.

To me, that's the job of my elected officials. And this past Tuesday's resounding Republican victory in Virginia is proof positive that the incumbent Democrats are falling down on the job. This past Tuesday, voters took their legislators' advice and hired an attorney, Bob McDonnell, as Virginia's next governor.

McDonnell campaigned on a platform of being a problem solver, not a problem referrer. During our conversation, Kloch asked me, "What's wrong with referrals?" I responded, "At some point, someone has to be responsible for diagnosis and treatment." "I would hope so," she said.

Are Medical Insurers Sacred Cows?

2009-07-27T03:33:00.002+01:00

Health insurance companies are a powerful industry not easily provoked, pushed or intimidated into doing anything. This arrogance persists even after they've been fined millions for having failed their members and providers time and again.

In a June 2009 report, Health Care for America Now outlined the habitual abuses perpetrated by health insurance companies. The abuses run the gamut of denying coverage, preventing doctors from delivering medically necessary care, unduly delaying reimbursements to providers and patients as well as leaving patients with high out-of-pockets costs.

These are but a smattering of the lengthy listings of complaints filed against health insurers. A quick internet search reveals a multitude of settled and pending lawsuits against various U.S. health insurers for the same types of abuses they committed in prior years.

These insurers see the fines and settlement fees as a cost of doing business that is either passed on to members by hiking policy premiums or are paid out of business insurance proceeds.

They've spent tens of millions of dollars lobbying Congress against adopting a public option for fear that competition would cut into their market share. And while they talk of cooperating to lower health care costs, doing anything that would intentionally decrease shareholder profits is a breach of their fiduciary duty as a for-profit company. As a result, they have yet to commit a dime towards doing anything to lower health care costs.

Personally, I'm a proponent of capitalism and every American's right to pursue his dream. But there is a means to an end, and in America, there are supposed to be laws that are enforced by government agencies to protect its citizenry from fraudulent and harmful practices.

The current state of our economy is proof plenty of the tremendous influence the moneyed had in convincing our political leaders to tie the hands of U.S. enforcers in many fields, including health care. Yet evidence of such abuse continues unabated. Let me provide you with a few examples to demonstrate the extent of the problem.

In testimony before the U.S. Senate Committee on Commerce, Science and Transportation on June 24, 2009, former health insurance executive Wendell Potter revealed ways for-profit insurance companies intentionally make U.S. health care both the most expensive and most dysfunctional in the world.

Potter, who recently left his post as head of corporate communications for CIGNA Corp. after 16 years, told committee members, "Insurers make promises they have no intention of keeping, they flout regulations designed to protect consumers..." He called the insurance industry's effort to derail health care reform "duplicitous" and a well financed PR and lobbying campaign that may well shape reform in a way that benefits Wall Street far more than average Americans.

He described how Wall Street investors view what's called "the medical loss ratio" as a crucial indicator for determining the value of stock. The medical loss ratio is a measure used to determine how much the company pays out in claims as opposed to what is left over to cover sales, marketing, underwriting and other administrative expenses, including profits. He said that ratio has been shrinking since the industry has become dominated by for-profit insurance companies.

He said insurers keep medical loss ratios in check by culling the sick from their rolls. He cited a 2004 Wall Street Journal report describing how Aetna spent $20 million to revamp its computer systems so that it could shed some 8 million subscribers with the highest number of claims. One way insurers purge accounts, he said, is by raising the cost of premiums and deductibles to levels so unreasonable, the employers stop offering the plans to their employees.

According to the National Small Business Association, the purging of less profitable accounts through intentionally unrealistic rate increases helps explain why the number of small businesses offering coverage to their employees fell from 61 percent to 38 percent since 1993.

Another method insurers use to purge costly accounts, he said, is through policy rescission. Here, the insurer looks to find if the policyholder omitted a minor illness, a pre-existing condition, when applying for coverage, and then uses that as a justification for canceling the policy.

In an interview with Bill Moyers, Potter said, "At the executive level, you think about the numbers and whether you're going to meet Wall Street's expectations. You don't think about the people. I didn't put faces with the numbers."

A study by PricewaterhouseCoopers last year revealed just how successful insurers' purging actions were over the last decade. The accounting firm found that the collective medical loss ratios of the seven largest for-profit insurers fell from an average of 85.3 percent in 1998 to 81.6 percent in 2008. That translates into an additional several billion dollars for insurance company shareholders and executives at the expense of health care providers and their patients.

Potter blames these practices on the industry's consolidation over the last 15 years into one dominated by what he called "a cartel" of large for-profit insurers, who don't want any competitors, particularly from a public plan.

Such thinking flies in the face of belief in an economic system in which prices and the availability of goods and services is determined primarily by the free market. In fact, the Sherman Antitrust Act requires the U.S. federal government to investigate and pursue companies and organizations suspected of forming cartels and monopolies.

In the Golden Age of Motion Pictures, for example, the Sherman Antitrust Act was used to break up the lock the motion picture industry had on not only producing movies but also showing movies in studio-owned theatres.

The Act attempts to prevent a monopolist from artificially preserving his status and from nefarious dealings to create a monopoly. As explained by the U.S. Supreme Court in Spectrum Sports, Inc. v. McQuillan: "The purpose of the Act is not to protect businesses from the working of the market; it is to protect the public from the failure of the market. The law directs itself not against conduct which is competitive, even severely so, but against conduct which unfairly tends to destroy competition itself."

Curiously, health care insurers were exempted from anti-trust laws because of the McCarran-Ferguson Act of 1945, which allows for state but not federal anti-trust regulation.

As part of his PR job at CIGNA, Potter said he developed rapid-response mechanisms for handling media inquiries pertaining to member and provider complaints. He also had a hand in developing the strategy insurers used to defeat the last national health care reform effort under President Bill Clinton that is still being used this go round.

That strategy entailed issuing "talking point" crib sheets that instructed members of Congress and others to first pretend to support health care reform, and then use phrases such as "delayed care is denied care," "government takeover," "consequences of rationing," "bureaucrats not doctors will decide your care..." Potter said "Politicians mouthed the taking points CIGNA perpetrated."

In his June testimony, Potter described how during the last national health care reform debate, the president of CIGNA's health care division was one of three industry executives who assured members of Congress they enthusiastically supported specific goals to cover all Americans; eliminate underwriting practices like pre-existing condition exclusions and cherry-picking. Potter said industry executives are making these same assurances today -- only this time, the industry is bigger, richer and stronger. He said it has the money to buy access to have its arguments heard when the average U.S. citizen does not.

On July 21, 2009, The Washington Post reported on the extent to which industry cash flowed to drafters of reform. The article talked about how Senate Finance Committee Chair Sen. Max Baucus (D-Mont.) emerged as a leading recipient of Senate campaign contributions from the hospitals, insurers and other medical interest groups hoping to shape reform legislation to their advantage. According to the Post article, Baucus political committees received nearly $1.5 million in 2007 and 2008, when he began holding hearings and making preparations for this year's reform debate.

Overall, the health care sector gave nearly $170 million to federal lawmakers in 2007 and 2008, according to data compiled by the Center for Responsive Politics, which tracks money in politics. But, according to Potter, this money did not come without strings attached.

In his Bill Moyers interview, Potter described how health care lobbyists got their message, "Do as we say, or we can make things tough for you," through to elected officials. He said that if politicians didn't cooperate, health insurers would run uncomplimentary ads in their districts during re-election campaigns or contribute money to their opponents.

Further evidence of health insurers' raw dealings is easy to come by with a simple internet search.

Among them are numerous incidents in which state insurance commissions imposed fines on insurers for neglecting consumer complaints for prolonged periods. In some instances, the cited insurer also pledged to take steps to prevent the recurrence of the customer service violations as CIGNA did in January 2006 before the New York State Insurance Department. In this instance, CIGNA Healthcare of New York, Inc. was fined $150,000 for failing to respond to consumer complaints within 15 business days, a statutory deadline the state said CIGNA repeatedly failed to meet.

In July 2007, a federal judge granted final approval of a $93 million settlement in a securities fraud suit against CIGNA Corp. that accused the company of hiding the fact that it was experiencing significant problems in an overhaul of its computer systems and that its stock price had plummeted by 45 percent when news of the problem was disclosed. According to a press release dated August 15, 2007, on July 13, 2007, the U.S. District Court for the Eastern District of Pennsylvania granted final approval of an attorneys' fees award in the amount of $21,390,000, representing 23% of a $93 million securities fraud class settlement.

In February 2009, the Medical Society of New Jersey and the American Medical Association (AMA) filed complaints in the U.S. District Court of New Jersey against Aetna Health Inc. and CIGNA Corp. for allegedly underpaying physicians that do not participate in their networks. The legal action was joined by the Connecticut State Medical Society, the Medical Society of the State of New York, the North Carolina Medical Society, and the Texas Medical Association.

The separate proposed class-action lawsuits allege violations of the federal Racketeer Influenced and Corrupt Organizations Act, the Employee Retirement Income Security Act and the Sherman Antitrust Act.

At the center of these complaints is the use of the Ingenix database, owned by United Health Group, a national health insurance company. United sold access to the Ingenix data to both CIGNA and Aetna, which used the data to set fees for out-of-network providers. The Ingenix databases and United were investigated by New York Attorney General Andrew Cuomo, who alleged the database was rigged and ripped off consumers of hundreds of millions of dollars.

In January 2009, UnitedHealth reached a $50 million settlement with Cuomo. In a separate class action lawsuit brought by the AMA, state medical societies, health care providers and health plan members, UnitedHealth agreed to pay $350 million.

Subsequently, on March 25, 2009, a class action lawsuit was filed in federal court in California alleging that Wellpoint engaged in a conspiracy with other health plans to fix prices and underpay physicians for out-of-network services. The AMA, California Medical Association, Connecticut State Medical Society and the Medical Association of Georgia have also joined the Wellpoint lawsuit.

These are but a few of the examples I found. The list of suits and complaints against health insurers for repeat violations continues to mount.

In light of this, I have to ask, where are the government enforcers? Is our government powerless to curtail such rampant and blatant abuse within the health care industry? What about the untruthful marketing representations that seem to violate Regulation Z? What has the SEC done to investigate the Sarbanes-Oxley violations alleged in the 2007 U.S. District Court securities fraud suit? What happens if and when the corporate liability insurers stop paying court settlements?

I never knew our health insurers were such sacred cows.

I Want To Be A Vigilante

2009-05-27T22:28:00.005+01:00

I want to be a vigilante. More than anything. I tried to keep this blog from becoming an outlet for my rants and raves, but yesterday, after meeting yet again more victims disabled unnecessarily by U.S. Health Care, I'm outraged.

I'm outraged hearing that a person who isn't outwardly bleeding is made to wait 17 hours in agony in the ER only to be sent home and return two days later with a ruptured appendix.

I'm outraged hearing about a person enduring multiple hospitalizations to no avail until a surgeon overheard physicians discussing the hospitalized patient's x-rays and upon viewing the radiographs, informed them that the patient needed a gallbladder operation.

I'm outraged that a female colleague had to have her uniformed and armed policeman husband accompany her to a repeat doctor's visit in order to get the medicine she needed for her epilepsy and migraine headaches.

These are no longer anomalies. They have become commonplace, accepted occurrences in our society. And I've seen nothing in any proposed health care reform legislation that will change such accepted behavior that embodies the essence of wasteful spending.

What really got my goat, however, was an article on a respected patient advocate's website attempting to justify why physicians don't spend more time reading and analyzing a patient's test results. The reason she gave was that physicians aren't paid by the insurance companies to spend time reading and analyzing test results. There's no code for this, she said.

The article explains that doctors are paid by insurance for every patient they see according to CPT codes, which are developed, maintained and copyrighted by the American Medical Association (AMA). Development and maintenance of these codes and the publication of all the software, books and manuals needed by those who use them brings an estimated $70 million in income to the AMA each year.

The article goes on to explain that the doctor's compensation is tied to the amount of money the doctor negotiated with the insurance company for each CPT code procedure regardless of the amount of time it takes the doctor to complete. And the logical progression concludes that because there is no code for reading and analyzing test results, the physicians are justified in not spending their time doing such.

I ask, isn't reading and analyzing test results implicit in being able to derive a diagnosis, which is required for insurance payments?

Is it now acceptable for doctors to simply order tests and not review results? If so, how do they decide which of the many disease/condition codes to circle on the insurance form? Do they throw darts? Is this decided by where the doctor's finger lands when he closes his eyes and points to the paper?

I assume the physicians' contracts with the insurance companies has language that refutes this notion.

Yet we, as an enterprising nation with capitalistic ideals, have come to view "follow the money" as an acceptable mantra to justify nearly every health care foible. That's the way it is. Accept. Forget. Go about your business as usual. It doesn't concern you. Turn a blind eye.

To me, private enterprise's ethics sound more like the totalitarian "Big Brother" regime portrayed in George Orwell's novel, 1984, than any views emanating from our government about health care reform -- a government that appears to have gone AWOL when it comes to enforcing regulations.

This is no new revelation. In fact, if you read Holding Health Care Accountable by E. Haavi Morreim, you'll find that it is a well known and documented fact that the average insured U.S. citizen has less than a 50/50 chance of receiving an accurate diagnosis and proper treatment under our present health care system.

Would you risk your life savings deliberately in Las Vegas with those odds? I think not -- at least most of us probably wouldn't. Yet, without realizing it, based on the status quo, we're doing so daily not only with our wealth, but also with our lives.

My conscious mind keeps telling me that I'm barking up a tree with no chance of catching the squirrel. Being concerned and speaking out on such matters -- even caring -- is probably ruining my health even more than it's already destroyed. I have to admit, the picture of the state of our present health care system gets my blood boiling. But my subconscious tells me something different, and I'm still not convinced getting heated isn't a good thing given my low body temperature and blood pressure.

The Story #20: The Movie

2009-05-25T01:35:00.005+01:00

My saga of attempts to get medical care continues with an adventure in film making.

One blog reader suggested that I pursue getting medical care by contacting medical schools, which, she said, revel in using patients as guinea pigs for its students. I have to admit, the thought had crossed my mind on more than one occasion.

In fact, I started drafting a film based on the notion of re-enacting an "It's Academic"-style competition that pitted medical students from competing schools against each other. I toyed with the idea of incorporating as team coaches famous TV doctors, like Hugh Laurie as Dr. House, playing their TV roles in a real life "film" scenario.

Of course, no film would be complete without a romantic interlude. And so the film would start with a flashback scene from 25 years prior with a young med student's happenstance one night stand with a much younger me. (You didn't think that I wouldn't use the film as another chance to try to get medical care, did you?)

The two had met in a Northern Virginia bar featuring a country western band, managed by the med student's uncle. I was at the bar drowning my tears over lost love, when in walked the tall, thin youngster who resembled Clint Eastwood as portrayed in "Fistful of Dollars."

He stared at me the whole night before finally mustering up the courage to ask me for the last dance. It was a slow dance, and he was a fine dancer. Holding correct body position, he pressed me closer. He ended the dance with a long, slow back bending and dizzying embrace. He offered to drive me home as I'd become quite inebriated.

The student was a sophomore in a Michigan college to which he would be returning the next day. That detail had eluded me the night before. I became distraught upon hearing the news because I liked the young man considerably.

The one thing I knew we both had in common was that we had both been riddled with more than our share of illnesses as kids. Illnesses, I learned, that we still had then and that I know I still have today having never been properly diagnosed nor treated by any doctors.

Fast forward to today. Hugh Laurie, as House, is busy filming episodes for next season when he comes across an announcement that Johns Hopkins University Medical School is seeking a coach for the academic team that will be pitted against Georgetown University Medical School's team in a battle of wits to determine which of the schools has the better diagnosticians. On a dare and as an alumnus, House cannot resist the challenge. So he leaves the crew mid-shoot to become JHU's team coach.

The storyline leaves ample opportunity for the "House" cast to interject sideline sarcastic remarks about House's untimely departure in an effort to get him to return to filming.

As JHU's team coach, Dr. House meets with Georgetown's team coach (another famous as-yet-to-be-determined TV doctor) who happens to have been the young med student in the film opening scene. The two antagonists inevitably become friends.

In the interim, a half dozen patients with complicated illnesses have been chosen to be publicly diagnosed during the televised competition. I am among the patients.

As things progress, we learn that my illness, actinomycosis, is communicable if sexually transmitted. (This bacterial infection is slowly progressive and often only becomes apparent in mid-life once it has already wrecked much havoc on the body and incited secondary conditions to arise.)

Interspersed among competition questions are flashback scenes from the guinea-pig patients' doctor visits that reveal the reason for the question and the various influences that can lead to poor patient outcomes.

The Georgetown coach eventually realizes that his long-ago romantic interlude subconsciously affected his treatment of the patient with actinomycosis and that his having contracted the disease explains his own elusive health maladies. He's given a second opportunity to be a hero, saving my life and his own with Dr. House's help.

An alternate film scenario replaces the teams of med students with a team of actual doctors pitted against a team of TV doctors known as the "laypeople" team.

All kidding aside, the need for clinical exam testing of medical school graduates using simulated patient encounters was realized when, in 2004, The National Board of Medical Examiners reinstated such testing despite considerable grumbling from the American Medical Association and their student branch as well as the student arm of the American Academy of Family Physicians.

The National Board oversees the United States Medical Licensing Examination known as USMLE, the test physicians must pass to get licensed in most states. The exam tests both book knowledge and the medical students’ ability to diagnose and treat a patient.

As early as 1916, the licensing exam included a graduate evaluation of a real patient observed by an official physician-grader. This component of the test was dropped in 1964. Twenty years later, the licensing board was asked to design a new test of these skills. It took an additional 20 years to develop a standardized, replicative testing scheme.

In her book, Every Patient Tells A Story, author Lisa Sanders, MD writes that of the first group of 85 fourth year Yale medical students tested in 2005, 20% failed. She says Yale revamped the way the physical exam was taught as a result.

Sanders is an internist on the faculty of the Yale University School of Medicine. She writes the monthly column “Diagnosis” for the New York Times Magazine and serves as technical advisor on TV’s House, M.D.

Sanders describes the year-end final as simulated patient encounters set up to portray an actual outpatient doctor’s visit. The patients the students see are actually actors who have been trained to depict one or more of 320 medical conditions on which students are tested. Scenarios require the students to recognize a common illness, recommend the appropriate treatment or test and counsel the patient.

Such patient simulations were missing from ReachMD’s “college bowl” style quiz show, “Next Top Doc,” which aired August 2009. ReachMD, a multi-media provider of healthcare education and information, in partnership with the American Medical Student Association, hosted the tournament style contest in which select medical students from across the country competed for a $5,000 scholarship.

Is Obama's Healthcare Reform The Lesser of Two Poor Choices?

2009-05-16T01:10:00.005+01:00

I don’t think anyone knows if government-run or private-run health care is the answer. Both seem to be the lesser of two poor choices for a variety of reasons. Central among the reasons is the lack of focus on patient outcomes (quality of care) and the need to replace the practice of specialists handing off chronically ill patients to other specialists with a team-based approach for diagnosis and treatment.

My perspective is colored by my experiences with many doctors working within a privately run, for-profit medical care system — even before there was managed care. I had medical insurance, and I still became disabled because of what doctors did and didn’t do.

I became disabled under the privately run, for-profit managed care system because the many, many doctors I saw in the last decade did not read or analyze my test results. Not only did each assume some other doctor was quarterbacking my care, some prescribed medicine based solely on what they felt I needed and not based on any empirical evidence. (I found these unwarranted medicines caused irreparable harm, including bone degeneration — a clear example of uninformed consent.)

I was passed around, referred for repeat tests, and no one was seeing whether I actually got medical care. When I complained in writing, the doctors and Cigna, the insurance company, ignored and dismissed my complaints. I was unable to get anyone to listen to me.

So I gathered my medical records, studied everything medical I could access and self-diagnosed. What I found was that I have what are typically illnesses diagnosed in childhood: actinomycosis and what appears to be Hirschsprung’s disease. I’ve been sick that long but my immune system was strong enough to get me by..until I turned 50.

My symptoms of not being able to have a bowel movement without laxatives or an enema throughout my lifetime from when I was a baby could well have been caused by Hirschsprung’s disease (a lack of the nerves needed for adequate gastrointestinal motility). Or it could be caused by the partial obstruction in my sigmoid colon along with stricture and abnormal colonic mucosa mid-sigmoid that showed up on two CT-scans and the SBFT series of x-rays. Doctors didn’t know what to make of the abnormalities, so to save face or out of pride, they ignored findings rather than refer me to a surgeon who could read and understand what was on the radiographs.

The two CT-scans found that my entire colon was stool-filled. All this waste was being recirculated throughout my system, causing bacterial, viral and fungal infection, wreaking havoc with my immune system, causing adrenal overload, hormone imbalance, thyroid and cardiovascular problems… I have multiple lab tests positive for everything from H.pylori, clostridia, staph, candida albicans, active Epstein Barr virus and HHV6 infection…. All of this in my circulation made it difficult for me to breathe, absorb nutrients and get oxygen to the tissues so I could function properly.

Don’t you think one of the dozens of doctors I saw over the years might have taken notice enough to diagnose and treat me? None did. Must not be what they learned in med school or on their list of services provided.

Doctors groaned when I brought them the inch-thick stack of current test results in the hopes that each would not insist on re-ordering his own tests as so many of them did. They told me that they did not have time to read my test result reports. I was too complicated a case for their specialty so they had to refer me on to another doctor, but never to the colorectal surgeon I needed to see to address the route cause of my illness.

Doctors, who could not answer my questions about the mass one radiologist highlighted on a CT scan report, simply wrote that they saw no gastrointestinal problems rather than risk losing face due to incompetence or lack of knowledge. No one wanted to deal with me, so they didn’t.

When my money ran out, and the insurance ran out, I applied for Social Security disability using these same reports that my many doctors ignored. With these same test results and independent evaluation, Social Security employed and contract physicians found in record time that I was severely impaired in so many ways. The most blatant result of not being properly diagnosed and treated was the severe degeneration of my spine. I had no problem being awarded Social Security Disability and not one private doctor nor any attorney helped me.

I know what is wrong with me, and I know what it will take to get me well as long as disease hasn’t metastasized into cancer. Simple laparoscopic surgery, some penicillin and other antibiotics and antifungals, IVs to flush my system of pathogens, and nutrients to rebuild. The rest is up to God.

Recent studies found that spine and brain degeneration injuries previously thought to be permanent have now been found to be curable. The body does heal itself with a little help.

I’ve been doing what I can with vitamins and herbs, cleansers, etc. since I can’t do surgery on myself or write prescriptions.

I’m without funds or medical insurance now. Social Security makes all but select Disability beneficiaries wait 24 months after their SSDI eligibility date before qualifying for Medicare. I qualify for Medicare this August, just about the time I’ll be homeless due to foreclosure.

Is this a nightmare or what? When doctors keep referring a patient, the patient gets a rap of being a hypochondriac that no one takes seriously. Most people side with the doctors because they assume someone who went to med school and paid all that money for a degree surely must know more than a silly patient.

I’m taking bets on whether I’ll get the same run around with doctors on Medicare or whether a competent doctor will finally take me seriously.

If I was paranoid I would think this was a conspiracy against me, but I’ve seen too many other people in the same boat. I call them the silent majority. They all have the conditions people seem to get before they’re diagnosed with cancer. We’re ignored, and the fact that society just accepts this is astounding.

There is a cause for most disease that is curable if addressed before it metastasizes into cancer.

What I really want to see is enough good hearted, competent doctors get together, acknowledge the repercussions from the system’s limitations, and come up with ways to change for the better. I’m certain that if a group of doctors presented a plan purporting a better way to provide health care to a venture capitalist, those doctors could raise the money they needed to put their idea into action. This could be a prototype that could be expanded if it succeeds.

President Obama isn’t proposing doing away with private health care. He just wants to provide people like me an alternative because he knows that government ends up paying — in disability benefits and Medicare — for private health care’s mistakes anyway. I’m proof of that. Why not try to put something into place that might prevent someone like me from having to become disabled in the first place?

At least the Social Security employed doctors read my reports. It only took them one month to figure out what was wrong with me. I’ve been seeing private doctors for 55 years, and they still haven’t figured it out.

I believe isolating each of the specialists is the main problem. The specialists need to talk to each other to understand what’s going on systemically in a patient’s body. The pathogens that cause infection don’t stay in one area. They travel via the lymph, bloodstream, even through tissue to other parts of the body and cause secondary problems.

How are doctors expected to diagnose anyone if each is limited to inspecting only one area of the body or one organ? He’s working with blinders on, running to a finish line based upon the narrow view of the road he sees without the benefit of peripheral vision. No wonder there are so many medical mishaps, most of which go unreported.

I’ve always believed in the saying “Do what you love and the money will follow.” I never got rich, but I loved my work and made a comfortable middle class living. Well, it seems doctors aren’t doing what they love if they have to spend so much time chasing insurance money. To me, medicine has become a business about money — not about helping people heal. No wonder everyone is miserable.

In Defense of Health Care Reform

2009-05-08T03:57:00.004+01:00

President Obama could gain more support for his proposed health care reforms if the government actually enforced existing laws.

Under our current system, I believe medical insurance companies have vicarious liability for the negligence of their network providers. Calling the insurance companies to the carpet for the negligence of its providers would expose reasons for the high cost of private for-profit health care and the low quality of care.

I’ve been disabled the last five years because the many providers I saw while insured by CIGNA didn’t have time to read the test result reports. CIGNA rewarded its providers with year end bonuses for having more healthy patients, so my doctors “saw” more patients as healthy regardless of the patients’ actual condition.

On the other hand, using these same records and independent examination, the Social Security Administration’s employed physicians — whom, I suspect, have more time to read and analyze reports — found that I was disabled due to degenerative disc disease caused by untreated infections.

Based on this experience, I assume that I might have a better chance of getting government paid doctors to listen to me and provide the needed care for a few reasons. 1. There might be more accountability for satisfactory patient outcome. 2. Doctors wouldn’t be paid based on the number of patients seen per day, but on the service provided the patients they did see.

Insurers who advertise and promote patients' rights to be heard in SEC filings shouldn’t get away with dismissing and ignoring member complaints, which is exactly what CIGNA did in my situation. I have written correspondence to CIGNA, my primary care physicians and referred specialists complaining about their failure to take my health concerns seriously. (Since I've become disabled while in their care, I think I have a point.)

My blog http://doctorblue.wordpress.com #8 “Search For A New PCP” provides details about my experiences dealing with CIGNA customer care and the numerous, repeated phone calls it took to correct multiple billing errors and to get approvals for CT scans and diagnostic procedures. Surely, insurers should be corporately liable for failure to properly oversee staff and correct quality related problems, and for breach of good faith and fair dealing in failing to provide the insured appropriate care, as well as for breach of fiduciary duty for failure to monitor, investigate and oversee its management system.

Yes, I got my CT scans, MRIs, SBFT, colonoscopy, etc. — all showing abnormalities that the insured’s providers chose to ignore, overlook, downplay… What good are they if no one is there to read and properly analyze the scans to form a proper diagnosis?

The referred specialists made mistakes and the referring doctors chose to side with the specialists without examining the evidence -- the reports in my patient records. None of the doctors were receptive to my repeated attempts to convince them to reconsider their decisions. Try finding a medical malpractice attorney to represent the injured party once the patient is broke and disabled.

Perhaps CIGNA is the anomaly among all the other more proficient insurers, but I think not.

If you read my post #19 “Virginia Workers Compensation Claim,” you’ll see that I didn’t get the lifetime medical care and hand surgery I was awarded due to surgeons’ fear of 1) not being paid by the insurer under Workers Comp, and 2) differing opinions on the surgical procedure needed. Aetna was the employer’s insurance company.

We didn’t change civil rights until the courts got involved. We can’t legislate how people feel. But we can enforce the laws that were enacted to protect the rights of harmed individuals. Health care won’t change until the government mandates action through regulation. At least a government-run system would provide an option for obtaining competent medical care, which I don’t have now and didn’t have when I had medical insurance.

Letter to a Patient Advocate

2009-05-02T01:43:00.007+01:00

Advocate,

Thank you so much for responding to my e-mail plea so quickly. I saw on the internet that you have another day job and couldn’t help wondering if you had given up patient advocacy because of constraints on your time or the inability of many to pay for advocacy services.

From your bio I saw that you were a registered nurse and a faculty member at a medical school. Your background gave me the impression that you might know the ins and outs of how to find out which surgeons had the best patient outcomes and how to get access to such surgeons. In my travails, I’ve developed great respect for registered nurses as I found they are much more knowledgeable and facilitative than most give them credit for.

My need is very specific. I need to find a competent gastrointestinal surgeon. And that’s it. There’s nothing else.

The only people I know who had successful outcomes finding competent surgeons were those who had a connection (someone working in the medical field). The only way they got an appointment to see a competent surgeon was because this inside connection personally asked the surgeon to meet with the patient. Once the patient met with the surgeon, and the surgeon agreed to do the surgery, then the patient went to his primary doctor to get the insurance-required referral.

The people I know who went through this scenario are very protective of and will not share their “inside” connections. I suppose it has to do with not wanting to overburden and risk losing their contact(s).

Given all of your present obligations, I can see you may not be able to help me, but maybe you know of someone else who would.

I’ve already tried the ways you suggested that I seek competent medical care.

1) I contacted my elected officials or, rather, their “constituent representatives” on both a state and federal level. You can’t get past the guard dogs for a brief meeting with a politician without a big check. I sent written correspondence asking for assistance to State Delegate Adam Ebbin, State Senator Mary Margaret Whipple, U.S. Representative Jim Moran, and U.S. Senator Jim Webb. The bottom line is that politicians don’t intervene in personal matters. Senator Webb’s office did help me with Social Security Administration issues since I became disabled while seeking medical care.

I found the attitude toward chronic illness among political constituent liaisons interesting as well. Suzy Warner, district director for Congressman Moran, said she felt really sorry for me, but that her husband had received great care before he died of cancer, and so she couldn’t relate to my experiences. She said she was surrounded by children, family and friends during her husband’s illness, which comforted her. She said she knows that her husband was left to deal with the trauma of chronic illness alone, but there was nothing she could do for him.

She asked me what illness I had, and looked it up on Wikipedia as we spoke over the phone. Once she saw that actinomycosis is treated with penicillin, she said it didn’t appear I was that bad off and couldn’t believe I would have trouble finding competent care.

Two of Senator Jim Webb’s constituent representatives suggested that I look into government programs like Medicaid, food stamps, and HUD for housing since my home was in foreclosure. When I asked for more specifics about which programs I could apply for, their responses were flippant — too many to be expected to keep track of.

State participation in the federal Medicaid program is voluntary, and Virginia does not offer Medicaid to childless adults unless they are disabled with no assets or are pregnant. Most low-income Virginians don’t qualify. Even if you are in foreclosure, you’re still considered a homeowner with an asset.

According to AARP, 20 percent of Americans nationwide are covered by Medicaid. Only 11 percent are covered in Virginia, which ranks 48th of the 50 states in the number of Medicaid recipients as a percentage of the state population and 48th in Medicaid spending per capita.

You have to have no assets and an income of less than $600 per month to qualify for food stamps in Virginia. The wait list to qualify for HUD sponsored housing is three years long. Fairfax County stopped doing Section 8 vouchers years ago.

There was not one state program in Virginia to help me even though I had no income at the time, was disabled due to medical negligence, and was about to be evicted. Don’t you think our politicians should know how little help there is for persons who become disabled prematurely without funds for support? Don’t you think the staff’s “let them eat cake” attitude toward helping the poor is a bit over the top?

Jane Burton in Mary Margaret Whipple’s office suggested I contact the Bar Association to find an attorney so that I could get medical care. There is no pro bono legal help in Virginia for the broke disabled, so I can’t imagine how Ms. Burton thought I would be able to secure consul.

Adam Ebbin’s staff couldn’t get it together to even acknowledge my concern. I got a call stating that my request for assistance was received and would be looked into, but no call back. I’m assuming that once it was deemed a personal matter, my letter was trashed.

Written comments submitted to federal legislative aides concerning my experiences and the need for health care reform landed in the abyss. Blog discussions on WAMU’s “The Conversation” revealed that my experiences contacting my elected representatives was not uncommon. Others wrote that their opinions and suggestions were also seemingly ignored.

2) Health Care Blogs. I signed up and participated in a half dozen. Great for moral support. The need for competent medical care is rampant. Very unhelpful for someone with a rarely diagnosed illness like actinomycosis, for which there is not even a support group. NORD, the national organization for rare diseases, didn’t even have the disease listed. I get lots of general suggestions to seek out clinical trials, or to contact any infectious diseases specialist who “ought to” be familiar with…

You need a physician’s referral for clinical trials, and I couldn’t get my doctors past a diagnosis of high anxiety. Then again, what would a clinical trial for actinomycosis be trying to achieve? Proving the efficacy of penicillin? Trial surgery to remove an infectious mass?

Infectious diseases doctors I saw don’t even believe that esophageal or gastrointestinal yeast infections exist even though Merck and other pharmaceutical companies charge exorbitant prices for their newer IV antifungals like Cancidas, which were developed specifically to treat gastrointestinal fungal infections. The infectious diseases doctors I saw believe that fungal infections only occur cutaneously on the skin of HIV and cancer patients, in women’s vaginas and as harmless oral thrush that everyone has so there is no need to treat.

3) Seeking Publicity. My attempts without knowing someone specifically at the station or newspaper fell flat. I submitted my story to Discovery’s “Mystery Diagnosis.” It was rejected because I don’t have a happy ending. There’s no resolution. Discovery gets thousands upon thousands of stories from people just like me seeking competent care to no avail. It’s an old story no one wants to hear without a happy ending. It’s too depressing otherwise.

I could put more effort into getting my story publicized, but my energy is very limited. Since I get Medicare in August, I thought it might be more productive to try to find a surgeon and schedule surgery to correct my intussusception.

4) One last example about the difficulty in getting medical help with an infectious diseases doctor at Johns Hopkins.

I heard Jonathan Weiner, Johns Hopkins University professor of health policy and management, on The Diane Rehm Show. So I contacted him for assistance. (When Diane Rehm had difficulty locating a physician knowledgeable about spasmodic dysphonia, she went to Johns Hopkins without a referral and was diagnosed within one hour by a JHU physician, who treated her at the same visit.)

Prof. Weiner suggested that I make an appointment with JHU’s Infectious Diseases Division physicians. He even had the admin assistant call me to set up the appointment. Wow. But when I didn’t have a doctor referral stating the diagnosis already, she refused to make the appointment. She said that it was JHU policy that all patients must have a doctor’s referral to be seen, and the referral must state the diagnosis or reason for the referral so that JHU physicians will know upfront if they will be able to help the patient.

When I repeated this unbelievable response to Prof. Weiner, who, mind you, is in charge of JHU health policy and management, he said he, too, could not believe that a JHU physician would not see me for an initial consult because I did not have a doctor’s referral. Keep in mind, everyone acknowledged I did not have medical insurance coverage and that I would be paying cash for the office visit. Professor Weiner suggested that I file a complaint with JHU Patient Relations (the patient advocacy group). I did.

To cut to the chase, on January 13, 2009, I received the following written response to Patient Complaint #12610 from Paul G. Auwaerter, MD, Clinical Director, Division of Infectious Diseases, Johns Hopkins University:

“Dear Ms. Gardiner: I have been notified through the JHMS Patient Relations of your complaint regarding some telephone calls in order to set up an appointment in our Division of Infectious Diseases. As you were appropriately told, we ask that patients be referred by their physician with a specific question. Since we have limited faculty and limited appointment times, this is how we can best determine how to help the patients most in need.”

I want to add that when I was trying to set up the appointment I faxed over a pathology report showing actinomycotic granules, lab tests positive for bacterial infection, and CT scan results demonstrating the features seen in patients with actinomycosis in order to prove to JHU doctors that I had actinomycosis. They said the tests weren’t current enough and would have to be redone as if some miracle had occurred between then and now.

In sum, while all the advice I’ve read about empowering patients to take control of their medical care is right on, I found the practical application of such advice intangible. The advice seems to be written for a people and a place as things “ought to be” and not as they are. We’re dealing with less than perfect human beings who have chosen to “follow the money.” Doctors lost sight of the fact that patients pay the insurance companies who pay them, so it is ultimately the patient whom doctors should be working for — not the insurance companies.

This focus on appeasing the insurance companies to get paid seems to have warped doctors’ (and others’) view of what they do. Insurance companies who reward doctors for having more “healthy” patients encourage doctors to report and see more “healthy” patients regardless of the patients’ actual condition. It takes less time to see “healthy” patients, and we all know doctors are paid based upon the number of patients they can see in a day.

On my own, I’m fighting a Goliath. That’s why I need your help. I need someone who can get me an appointment with a competent gastrointestinal surgeon.

Very respectfully yours,

“Doctorblue”

You Write This Story's Ending

2009-04-29T06:51:00.006+01:00

Some readers want to know what happened as if this was an episode of the Discovery Channel's "Mystery Diagnosis." Was my self diagnosis accurate? Did I have the surgery and was it successful? Did I discover the cure for what is ailing me? But my story didn't qualify for the TV show because there is no happy ending. That's the problem with real life. It's not like the movies.

So who's stopping you from making it so?

In "John Q," a 2002 film starring Denzel Washington, a down-on-his-luck father, whose insurance won't cover his son's heart transplant, takes a hospital's emergency room hostage until the doctors agree to perform the operation. The movie might have been too depressing if, coincidentally, a woman killed in a car crash hadn't happened to be an organ donor with a matching blood type...and a TV news crew hadn't broadcast video of a heart wrenching phone conversation between father and son that touched the hospital administrator enough to put the son's name on a transplant recipient list...

My story is more like a Mr. Bill saga. Mr. Bill is the little Play-Doh doll that became one of Saturday Night Live's most popular characters. In every clip, Mr. Bill's nemesis, Mr. Sluggo, dismembers and smashes Mr. Bill with the help of the evil Mr. Hands as Mr. Bill resounds his notorious refrain, "Ohh Nooo!!!"

My story, chronologically portrayed in blogs from #1 on, doggedly continues with Mr. Bill as the dismissed, forgotten patient, now disabled with severe bone degeneration and barely functioning after five years of searching for competent health care. In my story, if I die, doctors get away with manslaughter, and society doesn't even blink.

My story is not unlike that of many other Americans whose doctors failed them. You just don't hear about these people because most have families to care for them.

If I sound angry or bitter, well, maybe I am. Is it fair for me to be mad? And if so, at whom should I be mad?

When the credit crisis hit, it became apparent that nobody was even trying to restrain investors. Well, when the health care system here implodes, it, too, will become apparent that nobody dared stop the runaway money train we call U.S. health care.

We let doctors keep busy ordering tests and shuffling patients among all the different specialists and labs, when all the while no one was doing the math — adding 2+2 — to examine whether their actions were necessary, or even warranted, based on the particular patient’s circumstances and condition. Is all this testing and shuffling really necessary to diagnose and treat a patient? Or is the real reason for needing all of this to deliberately blur the role of primary diagnostician to make medical malpractice suits too complicated and costly for most patients to pursue?

Tell me, how many doctors does it take to diagnose a systemic bacterial infection? How many tests showing positive signs for inflammation and infection do doctors need to discern bacterial infection? Is it really necessary to order tests of substances from every orifice, get a biopsy and CT scans to determine a patient has an infection? Apparently, it is.

Or is penicillin not a sexy enough drug to prescribe? Are doctors afraid they won’t look smart and hip enough if they prescribe this antibiotic since none of the pharmaceutical reps are hyping it? Does the reliable affordable standard pale in comparison to all the super expensive new drugs being hawked? Do doctors intentionally prolong a patient’s illness with continued testing before prescribing any treatment in the hopes of eventually finding cancer where the selection of treatments is more varied and interesting? It seems so.

As you’ll see if you read my blogs, I wasted a lot of time and money while I still had medical insurance with doctors who were either incompetent or just stopped caring about their patients. I was caught up in a maddening scenario of being really ill, being told I wasn’t that ill and refusing to believe that not one of the dozens of doctors I saw was going to help me get better.

I didn’t figure out what I had until after I’d run out of money and insurance and stopped seeing doctors. (None of my doctors diagnosed nor treated me despite the wealth of positive test results.) It took me another year to find a doctor who knew anything about actinomycosis (an invasive bacterial infection), so that I could get a prescription for penicillin. Usually the disease is treated in-hospital with intravenous penicillin for three weeks and accompanying surgery before the patient is prescribed oral penicillin for the next 6-12 months. Not having money nor insurance now, oral penicillin will have to do.

Actinomycosis is slowly progressive and developed to its severe state over my lifetime. It explains the many unrelenting earaches I had as a child and chronic problems with my teeth and tonsils. Undetected, this common childhood illness manifests as a much more debilitating illness in the adult’s middle years, when the organs and immune system are no longer functioning up to par. When infection isn’t detected, it spreads to the skin, vertebral bodies, brain, liver, kidneys, lungs, intestines and pelvic organs.

In my case, the invasion of pathogens sparked an autoimmune condition, which led to co-infections, including staph, Candida and e-coli, for which treatment with penicillin alone is insufficient. Unfortunately, I found, many doctors only like to address one thing at a time, so finding a way to secure prescriptions for antifungals and antibiotics for gram-negative bacterial infection among other treatments became a project.

My problem is congenital. I was born with an intestinal abnormality (an intussception or pseudo obstruction) that functioned much like a kinked hose does. When a hose is kinked or folded onto itself, water will not pass through to the nozzle no matter how much you open up the spigot. Instead, greater water pressure is likely to cause the hose to form a bulge at the kink and eventually burst. At least that’s what happened to me — both with the hose and my intestines.

Not only was I unable to pass waste without the use of enemas from when I was a baby, but the resultant back up of fecal matter, mucus and inflammation caused the formation of intestinal ulcers that leaked this toxic waste into my bloodstream. There, white blood cells streamed to engulf the foreign bodies, thereby setting off an autoimmune response. I developed anemia from the loss of red blood cells bleeding into my intestines. Inflammation began clogging my veins and arteries, which contributed to the development of peripheral vascular disease or arteriosclerosis.

Still, all the doctors I saw during my lifetime felt my constipation could be resolved with stool softeners and suppositories. None took me seriously. It was much easier for them to believe that the patient was creating her own illness or that “it was all in my head” and prescribe antidepressants.

Even when my abdominal CT scans showed various abnormalties, ulcerations, narrowing…doctors determined I had nonspecific colitis for which they prescribed no treatment. During colonoscopy, the gold standard test for detecting colon problems, the colon is pumped up with air so my intussception or kink went unrecognized.

Untreated, the infections led to adrenal fatigue, hypothyroidism, hormonal imbalances, kidney problems and eventually metastasized into osteomyelitis, causing severe degeneration of my spine. This degeneration, in turn, impacted the nerves regulating the function of every one of my organs.

And yet doctors were still telling me that I was healthy because I didn’t look sick to them and because all the pathogens for which I tested positive — Candida albicans, staph, e-coli, Actinomyces — were all part of one’s normal flora that did not require treatment. They chalked up my back pain and persistent lower abdominal pain to gas and did nothing.

So despite the numerous Mr. Bill-type encounters I’ve had with doctors, I continue to pick myself up, put on my Pollyanna face and persist in believing I will find that one knowledgeable, empathetic doctor, only to have my spirits dashed again.

I got too depressed to keep writing about my experiences for now. I figured if I put some distance between my experiences and what I think about, the experiences will eventually appear to be more comical than tragic. What do you think?

It scares me a great deal to know that most physicians, even surgeons, don’t have a clue about so many illnesses. Many doctors justify ignoring illness by claiming that because so many people have the same condition, the illness is “normal,” and therefore, there is no need for treatment. That means if we all get swine flu or ebola, we’re still all healthy.

If you ask me, isn’t there a matter of degree of infestation or overgrowth that ought to be investigated here? I mean, the progression of logic for their argument would indicate that only organisms from outer space cause disease. Following their logic would mean outbreaks, epidemics and pandemics were all “normal.” The more, the merrier.

What I don’t need is an unknowledgeable surgeon doing exploratory surgery without any understanding of the diseases he’s confronting. Not only might I wake up after surgery with no large intestine, who knows what else might be missing or left behind?

If you think my concern is a bit over the top, consider that at the same time my doctors felt I wasn’t ill, or ill enough to be concerned about, the U.S. Social Security Administration deemed me to be permanently disabled.

Last fall, I applied for and was awarded Social Security Disability within three months — the shortest time frame practical by law given that the patient’s doctors have a month to respond to the Social Security Adminstration’s inquiry. No non-SSA doctor nor attorney helped me with the claim. Many applicants aren’t awarded disability benefits until after they appeal their first denial.

I found that many people are under the impression that once you get Disability, you qualify for Medicare coverage. Not so fast. SSDI beneficiaries are eligible for Medicare coverage only after 24 months of being deemed eligible for disability benefits. I qualify August 2009.

I suppose legislators assumed state-run Medicaid programs would cover uninsured recipients in the interim. Even though the media reports and everyone thinks Medicaid is federally mandated for children and the disabled, not all states offer Medicaid to the disabled. Virginia, for instance, only offers Medicaid coverage to women during their pregnancy and to children.

So when I go out there now, again believing that the next doctor I see will begin a treatment regime so I can get on the road to recovery, only to find that I must first endure the costly battery of updated tests to prove to this doctor that a miracle hadn’t occurred since my last battery of tests, I am watching my meager disability stipend — my only source of income — wither unnecessarily. I’m paying this doctor with the same funds I need to use to secure new living arrangements, food, etc.

My attempt to explain my dire financial situation to the doctor is typically met with disbelief. Surely, there are assets and savings! Since becoming disabled, I paid my bills from the proceeds of sold assets. When I ran out of assets, I stopped paying creditors. But for these doctors, it’s infeasible that my savings and assets were exhausted after five years of not working — paying for living expenses and medical help that was never delivered. It’s as if the doctor and I are living in two separate worlds, and neither can fathom what it’s like for the other.

At each succeeding office visit, I endured an explanation of the rationale that all the tests were needed to justify to the medical insurance carrier…What medical insurance carrier? What part of “self pay” was not understood or believed? But the larger question that must be asked is: “Whom is the doctor working for?” The patient, the medical insurance company or is he just trying to protect himself at the patient’s expense?

I am hoping to have identified a competent surgeon and to have shored up stable living arrangements soon. I’m in the process of losing my current home. Surgery will have to wait until after I find somewhere to live as I don’t want to end up being homeless with a colostomy bag or incoherent on pain meds.

As you can see, the story’s ending has yet to unfold. And that’s where you come in. Tell me how you see the story ending, and then make it so.

Tell me you believe you have the power to change this story’s ending. Not for me, but for yourselves. Why should you care? Well if it happened to me, it can happen to you — as unlikely as that seems in the moment. Do you really think you will escape the mistakes inherent in our broken health care system?

My problem all along — and the main thrust of this blog — is that I can’t find a doctor with the needed knowledge or will to help me. You can help by simply helping me find that doctor, who is most likely, a surgeon — someone who can read radiographs and who is willing to consult medical experts on conditions with which he is unfamiliar.

You can help me find somewhere to live. It’s not easy qualifying for any type of living quarters once your credit is shot even if you offer to pay several months of security upfront.

You can help by finding me pro bono legal counsel — someone who believes in the values upon which our nation was founded.

You can help by turning this story into a movie or episode on “Mystery Diagnosis” so that others might recognize how blatant doctors’ errors have become and change things.

You have a choice — to do something or to do nothing. Your actions will affect the outcome of this story and your own life. I never imagined I would be in this position. I’ve been independent and self reliant most of my life. It’s one thing to ask friends for help when you’re healthy. It’s another thing to ask for help when you’re sick with no idea of when or if you’ll get better. Well, I’m asking. If you believe in karma or the axiom, “What goes around, comes around,” you’ll know it’s the right thing to do.

What I Know About Health Care Politics

2009-03-05T08:12:00.001Z

I'm pre-empting my promised continuing saga on efforts to secure legal counsel for medical malpractice in honor of President Barack Obama's conference on health care today.

If NPR's Morning Edition was accurate in its portrayal of events, this will be among the first forums on health care that begins with a discussion on the ways health care delivery or quality of care needs to change in order to lower costs. Personally, I'd like to hear what suggestions practicing doctors have on the subject.

In re-reading yesterday's blog post on my workers compensation suit against U.S. Health, it was clear to me that addressing how doctors are paid is key to improving patients' quality of care. The current payment system rewards doctors for seeing lots of patients for short periods rather than for achieving results or helping patients actually get well. The insurance bonus programs designed to reward doctors for having healthy patients only encourages doctors not to take on chronically ill patients and to overlook illness in patients who really need health care.

Patients need to be empowered and brought into the "system" as active participants. This paradigm shift from the deist doctor who dictates patient care protocol in a "my way or the highway" manner will be difficult for many doctors to accept or employ. Such change will likely necessitate doctors hiring patient care coordinators who meet with patients to summarize their questions and concerns so that they may be addressed cost effectively with the physician.

For patients with multiple health issues who are seeing various doctors, the office care coordinator would be tasked with communicating with all of the patient's doctors to make sure all care providers are versed on the patient's care and progress. Implemented effectively, such coordination among care providers should facilitate proper diagnosis of the underlying cause of illness and prevent treating only secondary conditions that occur as a result of the undiagnosed, untreated underlying condition.

The position of care coordinator would be analogous to that of a project manager, who ensures that jobs are completed timely and within budget by keeping abreast of progress and troubleshooting glitches.

A rating system should be established so that patients can easily assess the services offered in different practices. Can patients book extra time with the doctor? Will the doctor be open to discussing procedure options? Will the doctor return phone calls from patients with a question or must the patient speak through his assistants? If a patient finds his medical record contains misunderstood or incorrect information, can the information be corrected? If so, what is the procedure?

The intent is to shift the focus to patient care and away from what the doctor needs to do to get paid.

I was quite inspired by U.S. Senator Ted Kennedy's heartfelt promotion of health care for all in his speech at the Democratic National Convention last year. Still I can't quite reconcile in my mind the dichotomy between what politicians espouse and the inequities that I find existing within established government health care programs. Take Medicare eligibility for the disabled, for example.

Those found to be disabled by the Social Security Administration are eligible for Medicare coverage after 24 months from the date the person became eligible for SSDI benefits with a few exceptions. Disabled persons requiring kidney dialysis or with ALS and a few other conditions are immediately eligible for Medicare coverage. I ask, where's the equality in providing health care coverage through Medicare only for those with these certain illnesses?

I am disabled -- not because insurance refused to pay or because of a botched procedure, but because my spine and central nervous system severely degenerated due to doctors' failure to diagnose and treat the infections that were caused by my undiagnosed and untreated Hirschsprung's disease. The sooner I can get access to real medical care, the greater the chance there is for me to get well enough to go back to work and become a productive, tax paying member of society again.

How hypocritical is it that our government sees fit to only allow those with certain disabling illnesses to access medical care immediately upon being awarded disability benefits? Multiplied by the thousands affected, have our legislators chosen to sacrifice tomorrow's future to save pennies today?

Those who suggest seeking medical care at the few low cost health clinics in this area are obviously uninformed about chronic illness. Any health clinic official will tell you that such clinics are not equipped or intended to address chronic or complicated illnesses. In fact, under our current health care system, it seems no doctor is set up to address chronic illness. ER doctors complain that too often internists have resorted to sending their non-emergency patients to the ER for medical work ups rather than conduct the necessary tests and take the time to diagnose their patients' illnesses on their own.

When I approached my elected representatives about the dilemma, I couldn't get beyond their staff, who suggested I hire an attorney or just couldn't relate. In Virginia, you need a doctor's backing to file a malpractice suit. I think that's unconstitutional. Why should I need a "treating" doctor's testimony when I have test results to prove my case? Even the Social Security Administration realized that many doctors refuse to participate in their patients' disability applications and so will arrange for some patients to see assigned SSA-paid doctors to help with the disability determination.

I'm hopeful and fearful about our new Congress's ability to move beyond its self patronizing environment and start addressing topics until now considered too risqué to tackle publicly -- like what are we getting for our health care dollars.

With so many conceding that our health care system is broken, I can't understand why politicians have refused to address the quality of health care. The focus has all been on funding. My insurance paid for the majority of my tests. Doctors, on the other hand, went on strike and didn't tell anyone so they could keep collecting fees.

Consumer laws protect us from shady contractors who don't perform per their contracts. Why is it okay for doctors to get paid for simply trying to help a patient? Who decides how hard they have to try? Contrary to HMO policy, my internists relinquished care to the specialists they referred rather than act as care coordinators per their contracts with the insurer.

The focus of nearly all the doctors I saw was on how to finagle the diagnosis to the insurer to expedite payment rather than on patient care. I found there was a pattern among doctors, in general, to downplay a patient's condition to the insurer to expedite payment. At first, this didn't faze me. But then, the doctors forgot what the real diagnosis was, hence making it impossible for me to get the care I needed. If doctors persist in massaging their diagnoses as they're taught to in classes held on how to expedite insurance payments, they should at least keep two sets of books to separate reality from fiction.

Under our current money focused system, our medical community is playing Russian roulette with an aging population. It's causing people, like me, to become disabled unnecessarily. Refuse to change and just watch our nation's social security fund being drained at a much faster rate by the increased numbers applying for disability because no one would address the impaired quality of care largely caused by our health payment system.

Outpatient care should be designed around a center in which internists and various specialists work together to come up with a comprehensive diagnosis. All would know how to read radiographs and be required to consult each other and come up with a comprehensive diagnosis before the first prescription was written. Liability for patient welfare would rest equally on the shoulders of each member of the diagnosing team, thereby creating an internal peer review check to reduce errors.

This would prevent a patient who started taking medication prescribed by one doctor from skewing test results ordered by the next specialist, seen weeks later. This would lead to faster and more accurate diagnoses since specialists are trained to only look for disease within their respective fields. Using the combined knowledge of all specialists upfront would drastically reduce the number of specialists who unsuccessfully treat a patient's secondary symptoms while the root cause of disease goes unaddressed. This would mean less administrative paperwork, less test duplication, less wasted gas driving to all the different specialists' offices and testing facilities and would drastically reduce the overall cost of health care. This would lead to greater patient health outcome and satisfaction.

The last few years trying to be heard or get help, I contacted all kinds of folks and tried all kinds of things to get through. I kept getting kicked downstairs to the admin or staff more concerned with protecting their realm than with truly assisting anyone with anything. It's quite a statement about human nature.

When you get that many no's, you begin to start wondering what it is about yourself or your approach that turns people off. Then you look around at the rooms full of people in the same boat, and you realize no approach can affect change if the recipient lacks the knowledge or experience required for you to get through. You feel like you're Al Gore trying to get across the concept of global warming. You wonder if you have the same quality that enabled him to persevere. Then you think of the alternative -- give up, die.

How loudly can someone yell H E L P!!! and still be ignored? All the while, you feel the cognitive dysfunction from your illness increase. You think you might wake up one day too alzheimerish to remember enough to care. That's why I had to write down my experiences with outpatient care doctors and the medical community before I forgot. The stories are compelling and shed light on the chasm between medical research and the practice of medicine that hasn't altered its robotic, deistic ways in over 30 years despite mind blowing advances.

Tell Me Your Story

2009-02-09T06:34:00.003Z

Since starting my blog about my futile quest for competent medical care in the U.S., dozens of readers have contacted me with similar stories of their own. The stories are heartfelt, sincere and alarming. It's as if the chronically ill are living in a silent, forgotten underworld that no one else cares about or can relate to.

I truly believe there is hope in numbers. Knowing that there are others out there who've experienced the same sort of mistreatment or worse may bring courage to others as it has to me.

Ultimately, I'd like to assemble a grassroots movement to bring focus to our plight. After all, why should the government have to pay for doctors' mistakes and negligence in the form of disability and Medicare payments and lost tax revenues? Why isn't there a Congressional investigation into doctors' practices and how they treat patients? Why isn't the government recouping its costs from doctors found to be negligent? Why aren't any health care reform measures focused on changing the internist-specialist-referral system that places patients in a fruitless endless loop of revolving doors?

Tell me your story here in the comments section. Then, if you are so inclined, send your story to your Congressional representatives, whose contact information is available at "Contacting the Congress" www.visi.com/juan/congress on the web. If you do write your legislators, tell them you are a constituent and what type of legislation or action you'd like them to take upfront. (For example, you could say you'd like to see a motion calling for the establishment of a Blue Ribbon Commission to investigate outpatient doctor practices based upon your experiences of simply being shuffled from one doctor to the next with no hope of being properly diagnosed or treated.)

If President Barack Obama is sincere in his pledge to change status quo, a sure way to prove it is to start investigating the industries the administration has taken a "hands off" policy toward in the past -- particularly if enough people call for such action. Your story can fuel the fire toward progress and change.

Patients Googling Their Way To Health

2009-02-03T07:58:00.007Z

Kudos to Google! I may never have deciphered what was wrong with me without the aid of Google search.

In spite of having read the Merck Manual from front to back twice and amassing a small medical library of my own, I have to credit my key breakthroughs in diagnosis to going online and googling specific medical terminology to learn the significance of test findings. Google results not only brought up websites that defined the terms but also brought up doctors’ abstracts of conditions related to the subject terminology. This is how I was able to piece together and make sense of all the seemingly disparate puzzle pieces involved in diagnosis.

A second source that reassured me that the multitude of things wrong with me were interrelated was House, M.D., the television show about what it takes to be a good diagnostician.

While in pursuit of a comprehensive diagnosis, some followers suggested sites like Diagnose-Me.com. The site was established in late 2002 as a doctor-programmer collaboration to provide a more in-depth evaluation of patient symptoms than a rushed in-person doctor consultation. (This just goes to show that even doctors are aware of the paralyzing limitations of our present health care system.)

Upon completing a questionnaire online, customers can choose reports ranging in cost from $0 to $77 depending upon the amount of doctor involvement.

A few years ago, I completed the questionnaire and received a report that gave a risk assessment for each of a long list of possible ailments based on reported symptoms. The report issued an advisory to seek professional medical advice for any conditions that may be life threatening. I found the report rudimentary in its computerized linear correlation of symptoms with possible diseases.

Rather than giving a comprehensive diagnosis, it rattled off a list of possible maladies based on each listed symptom individually. I opted for the free report. The more in-depth sample report gave lifestyle, diet and supplement recommendations for the patient’s possible ailments or conditions.

I always wondered why no one had developed computer software that could analyze symptoms comprehensively and rule out those diseases that don’t fit all of the patient’s symptoms.

I found the problem with diagnosis is that so many disparate diseases have the same symptoms except for one or two key determining factors. Ruling out maladies that don’t fit all of the patients main symptoms comes up all the time on shows like House. Based on a list of the patient’s symptoms, Dr. House’s proteges postulate the patient could have this or that except such and such disease doesn’t have x as a symptom, which the patient has, so they rule that malady out.

What the show demonstrates is that a good diagnostician doesn’t just rely on science for diagnosis. Dr. House always saves the day toward the end of the show because he’ll see something, like a plumber scratching his balls, which reminds him of herpes. This sheds light on the diagnosis that he’d been struggling for. He’ll realize that herpes viruses cause nerve damage to various parts of the body, then treats the patient with antiviral medication. The patient recovers and goes on to live a happy, healthy life.

I had this same sort of eureka moment this week. I started thinking way back to childhood about my health problems. I’ve always suffered severe constipation and had to have enemas to have bowel movements from the time I can remember — roughly three years old.

Doctors were as helpful then as they’ve been today. They recommended stool softeners, suppositories, laxatives and fiber. All the fiber did was cause painful gas, bloating and abdominal distension. The suppositories just melted uneventfully. Doctors all thought the problem insignificant. Some even laughed at how constipated I was upon digital examination. After all, everyone has constipation!

According to doctors, everyone has everything, so it must all be normal. That is, in fact, the standard upon which normal test findings are based. If the predominance of the population has it, it’s normal. And as our population continues to become sicker from eating unhealthy processed, sugar-laden foods, the bell curve of acceptable “normal” results widens. I ask, “If everyone gets ebola, will having ebola virus be considered normal, too?”

Wouldn’t you like a job in which you could just dismiss your customer’s complaints as something everyone endures so you wouldn’t have to fix anything? I bet you wouldn’t have many clients after a while. Yet doctors still thrive with loads of patients who never get cured and keep coming back because they don’t know what else to do.

My last blog post concluded that the root cause of my illness is due to a lack of or damaged nerve cells in my intestinal muscles needed for proper intestinal motility. This could be due to Hirschsprung’s disease or due to damaged nerve cells caused by volvulus (a twisting of my intestines), causing a partial blockage, which is cutting off the blood supply to my colon and depriving the nerve cells of the oxygen they need to function properly. The damage to my nerve cells could also be due to my HHV-6 viral infection, which causes demyelination of nerve cells.

The build up of fecal matter and toxins in my gut due to lack of motility is causing multiple infections, and that has a snowball effect on the immune system and the proliferation of inflammation.

Now I just have to find a doctor who knows anything about treating viral infections or addressing the causes of motility disorders and convince him of my findings. Do you think it would help if I had a medical degree? Do you think there are any doctors whose egos won’t get too bruised by the fact that a layperson came up with the diagnosis?

I can’t count the number of doctors who shut down the minute I discussed something outside of their limited scope of knowledge or pointed out a positive test result from a test they hadn’t ordered themselves. The whole appointment became about why hadn’t they thought to order that test. Forget the fact that they filed my test reports without reading or analyzing them or that they didn’t put two seconds into thinking about what was causing my illness or even believing I was that ill at all. To them I was just another patient with inexplicable idiopathic illness.

Where’s the passion in medicine? The curiosity? That which may have motivated doctors to go into the profession in the first place? It got drenched with the realization that all that mattered in life was money. And when money to maintain your Harry Angstrom lifestyle is your motivating factor for being, it’s no wonder that so many doctors stopped putting forth any effort to do anything for their patients besides collecting fees.

Health care is our next big meltdown. It’s presently operating under the same premise that brought us the subprime mortgage fiasco and current credit crisis. Everything was about making money rather than about providing a service or product.

I’d like to try to change this direction by bringing my story to the public as a representation of what tens of thousands of people in the U.S. are going through. I don’t care about privacy. I have nothing left to lose and everything to gain by telling my story.

We’ll never solve the health care crisis without reforming how doctors practice medicine. Reform that deals solely with medical care funding and insurance is like giving the banks and lending institutions money without adjusting the laws that regulate how they practice lending. What did the banks do with the bailout money? Shored up their balance sheets and paid shareholders.

Critics view my motives as simply advocating for universal health care. The truth is that I’m for real, actual medical care regardless of who pays for it. Nonetheless, if health care is a right, it should be a non-profit, self-sustaining business.

Presently, our system is largely based on shuffling patients from doctor to doctor and easing symptoms once disease becomes chronic. Few patients benefit. Many patients may think they benefit under our current system when they are really only being prescribed medicines that mask their symptoms so they feel better now. But the repercussions from taking these medicines will become apparent in later years because the root cause of disease was never addressed. What’s wrong is still going on undetected, undiagnosed and wreaking eventual disabling havoc. I know. It happened to me, and it’s happening to all those other people you can read about on the hundreds of medical self-help forums on the internet.

Thank God for Google Search! It helped me figure out what was causing my spine and central nervous system to degenerate. It’s helping me keep abreast of the latest treatments, clinical studies and on-going medical research. It put me in touch with others for moral support.

All I need now is the Stephen Colbert bump to progress.

The Story #18: Diagnostic Journey Leads To The Cause of Motility Dysfunction

2009-02-01T03:11:00.007Z

A few years ago, a group of scientists are said to have solved the age old question, "Which came first, the chicken or the egg?" The alleged consensus: the chicken. I ask, "Wouldn't the chicken have developed from a fertilized egg?"

Whatever happened, the concept eludes my grasp. In my mind, the mystery remains unsolved.

I bring this up because the same mental gymnastics involved in solving this puzzle play out in arriving at a diagnosis. For each determined ailment, I find myself asking, "What's causing that?" The train of thought leads me down a path reminiscent of the image of multiple diminishing mirrors you see within the mirror you hold in front of another mirror.

Many illnesses progress over long periods and show symptoms involving multiple bodily systems and organs, including the brain, gastrointestinal tract, reproductive organs, the bones, joints, skin, respiratory and urinary tracts as well as other parts of the body. This was the case with me as with so many others I read about.

My first instinct was to assume that whatever was wrong with me was located in the part of the body that was bothersome and could be addressed in a one-on-one correlation. I thought illness could be treated the same way you would bandage a child's scraped knee. For instance, if you had sinus problems, you had sinus surgery. If you had problems with infected tonsils, you had a tonsillectomy, and so on. End of story. But I found, in my case, these were secondary manifestations of another underlying undiagnosed condition.

I also believed that health issues could simply be addressed with prescription and over-the-counter medications. If you had a headache, you took an aspirin or acetaminophen. If you had stomach trouble, GERD or nausea, you took an Alka Seltzer, Tagamet or Zantac. For severe menstrual cramps, you were prescribed estrogen (birth control pills).

Never did I consider that what you did or took to address a problem in one area of the body might have deleterious effects in another part. I lacked team-think. I ignored the principle of yin and yang -- that for every action there was an opposing reaction.

I never considered the long term implications such actions would have on overall health. I never thought that problems would manifest years from the onset of symptoms as a result of such seemingly innocuous decisions as whether to take Tagamet for nausea. My understanding of side effects was limited to more immediate noticeable signs of stomach upset, bleeding, etc. Little did I know.

First, inflammation was considered the cause of my troubles. Still sick after efforts to reduce the inflammation, I looked for what was causing the inflammation. Further testing pointed to a systemic fungal infection from Candida albicans overgrowth. Still sick after attempts to eradicate the yeast alone, I looked for what was causing the Candida infection.

Additional testing revealed the presence of spirochetes in my blood. There was speculation of tick-borne Lyme disease. I was still ill after attempts to rid my body of Lyme. Other tests showed that I had a compromised immune system, an hormonal imbalance, as well as CFIDS and HHV-6 viral infections.

Remedies I employed helped lessen the severity of some symptoms, but not enough to improve my health. Some symptoms waned, while other new symptoms emerged.

What remained constant were the upper respiratory and digestive tract problems that had plagued me throughout my childhood and adult life. The fact that I could not tolerate many of the herbal remedies recommended for my conditions pointed to gastrointestinal problems as a main culprit in my illness.

Although my primary care physician had given up on me by this time, I found a way to obtain a CT scan of my abdomen and pelvis. The scan revealed a stool-filled colon, a redundant cecum, a decompressed descending colon, sigmoid colon stricture, among other findings. The radiologist suspected a mass or an obstruction, which colonoscopy did not confirm. (I learned much later that the colonoscope cannot access the cecum or ileocecal region where many abdominal masses that cause obstruction are located. This is also the location of the appendix, a part of the immune system that commonly becomes inflamed. In those with autoimmune disease, the over-reactive immune system may lead to inflammation associated with appendicitis and could lead to the obstruction of the intestines that causes acute appendicitis.)

No doctor would or could explain the significance of these findings, which came up again on a second CT scan. My doctors ignored or dismissed these findings. Likewise, no doctor could explain "the radiolucent bubbly artifact" indicated on yet another x-ray report, so this finding, too, was ignored.

Abandoned by the medical profession and now broke, I scoured the medical records I had gathered from various physicians, hospitals and medical facilities. I found I had a rare submucosal systemic bacterial infection, actinomycosis. (See previous blogs for more detail.) At first, I assumed that the bacterial infection was causing my colon to swell and could explain whatever the radiologists' remarks indicated. Then again, I found myself asking, "What was causing the bacterial infection?"

I got on the internet and started googling "redundant cecum" "stool-filled colon" and the like. I found medical abstracts of conditions associated with this terminology. Among findings were a high probability of cecum and sigmoid colon volvulus (twisting) and Hirschsprung disease.

Volvulus or twisting of the intestine and hernia can cause partial or complete obstruction of the intestine, preventing normal digestion and movement of food. With volvulus and hernia part of the intestine protrudes through a weakness in the abdominal wall. Untreated volvulus can block intestinal blood supply, causing tissue death or nerve damage. Volvulus most often occurs in the area of the cecum or sigmoid colon.

Hirschsprung disease or HD is a disease of the intestines that usually occurs in children. It causes severe constipation due to a lack of nerve cells (ganglion cells) needed to make the intestinal muscles push stool to the anus. Some patients with HD can't have bowel movements at all. Left untreated, stool can fill up the large intestine of a patient with HD.

HD develops in the womb. Some cases are hereditary; others are idiopathic. Symptoms include gas, severe constipation, anemia (shortage of red blood cells), infection and delayed growth. Barium x-ray shows a narrowed intestine (stricture) in places where the nerve cells are missing.

HD is treated with surgery that involves taking out the part of the intestine that doesn't work and connecting the healthy part that's left to the rectum. The procedure is more complicated with infection of the large and small intestines (enterocolitis), and may require intravenous administration of and or intestinal lavage with fluids and antibiotics to fight the infection.

Both HD and volvulus are motility disorders that disrupt normal propulsive gastrointestinal motor activity such as in ileus or gastroparesis, which commonly occur in patients with illnesses such as diabetes, fibromyalgia and infection. They cause constipation and bloating and are often accompanied by adhesion formations, ischemia and ulcerations. Damaged blood vessels don't carry the needed oxygen and nutrients to the nerves. Adhesion acts as a pivot around which the redundant intestine can twist.

Risk factors include electrolyte imbalance, hypothyroidism and severe illness, including viral infections. Since I tested positive for HHV-6, a virus that causes loss of myelinated nerve fibers, I have to ask whether treating the viral infection and correcting the intestinal twisting will resolve my motility dysfunction without intestinal resection?

Over the last five years, my diagnostic journey has taken me from inflammation to fungal infection to Lyme, hormonal dysfunction, autoimmune disease and viral infection to bacterial infection and the likelihood of the need for intestinal surgery. I believe that correcting my motility problem through anti-viral/anti-bacterial therapy and surgery may well resolve all the other ailments impacting my chronic illness. Reversing the damage to my spine and central nervous system may take years, if possible at all.

My task now is finding competent doctors willing to listen and convincing them of my findings -- all on a very limited SSDI monthly budget. I'm eligible for Medicare coverage this September.

The Story #17: The Religion of Diagnosis

2009-01-30T03:34:00.006Z

It's been said things aren't always what they seem. I say life isn't always what it "should be." This comes to mind because a lot of the advice I've been given is prefaced by and predicated on "should be" beliefs. I've been told any infectious diseases physician "should be" able to diagnose and treat actinomycosis. Maybe they "should be" able, but in my experience -- the reality of the matter -- is that they can't or don't.

I found that regardless of the doctor's specialty, a physician's ability to diagnose and treat illness is based upon that specific doctor's experiences. In other words, don't expect a doctor who has never seen someone with, say, malaria to recognize that his patient has malaria.

And if you are unlucky enough to have a rare disease or one considered to be rare -- a zebra off the radar screen -- the chances of an accurate diagnosis and treatment is sadly slim to none. Don't take my word for it.

During my pursuit of a knowledgeable doctor, I had some very interesting conversations with doctors about the art and science of diagnosis. This "religion" of diagnosis is based in "should be" beliefs. There are as many differing opinions on the subject as there are medical specialties. Talking about diagnosis and treatment with doctors is like trying to talk about religious differences. Between the poles of competing certainties, there's a discourse averse to question.

In my humble opinion, there are no clear cut answers -- only questions played out on patients like guinea pigs everyday. If a procedure or prescription works, that's proof of a correct diagnosis.

The intent here is not to sit on the sidelines and throw grenades. My intent is to uncloak the man behind the curtain so we can all see what we're dealing with as a starting point for improvement. My intent is to see reality for what it is with a view for a hopeful future.

So how difficult is it to put egos aside when saving face and personal wealth are involved? How many Davids does it take to overcome a Goliath? As many as it took to get President Barack Obama elected.

To illustrate my point, I'd like to tell you about a recent conversation I had with an internist which attempted to pinpoint who was responsible for coming up with his patient's diagnosis and treatment.

Dr. Sandy Ibrahim is one of two doctors at PartnerMD in McLean, Virginia. The practice is a concierge internist service that promises 24/7 access to the doctor, no waiting and 1/2 hour appointments. Patients pay an annual membership fee of $2,000 plus all regular medical costs for the service. PartnerMD offers a half hour free non-medical consult to interested parties to see if this practice will work for your needs.

My impression: PartnerMD targets healthy individuals more interested in executive physicals and testing to monitor their health status than in chronically ill patients. My perception was confirmed when I received an e-mail ad from the firm advertising Valentine's Day health packages that could include lunch with the doctor, massage, etc.

I was thankful to have been referred to a doctor who orders more in-depth biomedical tests and uses both alternative and conventional approaches to medicine in treating his patients.

The jest of my conversation with Dr. Ibrahim went something like this.

"First, I'd like to preface my questions with the assertion that any references to specific diseases or conditions are for example purposes only and are not an attempt to get your opinion on any health issues," I stated. "My questions are designed solely to get a better understanding of how this practice differs from the typical internist's office.

"I've found that specialists vary widely in their knowledge of various diseases, which has great impact on patient care," I continued. "How will you know if the specialist you refer me to is versed in treating my specific disease or condition? For instance, I was referred to ob-gyn doctors more versed in delivering babies than in treating female problems like endometriosis. I was referred to infectious diseases doctors who had never heard of my rare disease, actinomycosis. As a result, the doctors did not diagnose nor treat me in spite of my providing positive lab, pathology and radiographic test reports."

"And these were doctors in this area? In Northern Virginia?" she asked incredulous at the notion that a referred specialist would not be an expert in all aspects of his field. She then tried to reassure me that any specialists she referred would be knowledgeable in the condition for which the patient was referred.

"How will you know?" I asked. "What if the specialist isn't one you've worked with in the past? Will you or an assistant call and ask the doctor about his expertise?"

"I guess we would call their office and inquire about sub-specialty expertise," she said and then added that typically the internist relies on the specialist's expertise to diagnose a particular ailment if one is not readily apparent to the internist after conducting standard medical tests.

"Can you please explain how this internist-specialist referral process works?" I asked. "From my experience, specialists require the internist to have made a definitive diagnosis prior to seeing a patient. The specialist's efforts are then limited to conducting tests to prove or disprove whether the internist's specific diagnosis is accurate rather than in trying to find out what is wrong with the patient.

"Furthermore, in my experience, tests conducted by one specialist revealed something wrong in another specialist's field. And the same thing happened over and over with each specialist pointing to another specialist or back to the internist for diagnosis, so I never ended up with a cooperative collaborative comprehensive diagnosis or treatment," I said.

Dr.Ibrahim responded that internists run standard preliminary tests and examine the patient to determine first, if the patient's ailment is something the internist can treat, or whether the patient should be referred to a specialist.If a specialist is referred, she said, the internist relies on the specialist to diagnose and treat the patient. The referral, she said, is based on a general notion of the patient's ailment.

This thinking directly contrasted my own experience of trying to get an appointment with a specialist without a doctor's referral as evidenced by a January 13, 2009 letter I received from Paul G. Auwaerter, M.D., Clinical Director, Division of Infectious Diseases, Johns Hopkins University, in response to my complaint to JHMS Patient Relations. In the letter Dr. Auwaerter stated, "As you were appropriately told, we ask that patients be referred by their physicians with a specific question. Since we have limited faculty and limited appointment times, this is how we can best determine how to help the patients most in need."

It didn't matter that I had provided the empirical data -- the positive lab, pathology and radiology reports -- to prove my self-diagnosis and need for treatment by an infectious diseases physician when trying to set up the appointment. I found many doctors will only review the results of tests they order. I also found that many doctors have come to rely primarily on the first visual impression of the fully clothed patient in formulating their diagnosis.

In his book, How Doctors Think, Jerome Groopman, M.D. wrote:
"Medical students are taught that the evaluation of a patient should proceed in a discrete, linear way: you first take the patient's history, then perform a physical examination, order tests, and analyze the results. Only after all the data are compiled should you formulate hypotheses about what might be wrong. These hypotheses should be winnowed by assigning statistical probabilities, based on existing databases, to each symptom, physical abnormality, and laboratory test; then you calculate the likely diagnosis. This is Bayesian analysis, a method of decision-making favored by those who construct algorithms and strictly adhere to evidence-based practice. But , in fact, few if any physicians work with this mathematical paradigm. The physical examination begins with the first visual impression in the waiting room, and with the tactile feedback gained by shaking a person's hand. Hypothesis about the diagnosis come to a doctor's mind even before a word of the medical history is spoken. And ... of course, the specialist had a diagnosis on the referral form from the internist..."

With this in mind, I continued my line of questioning. "It's been my experience that doctors have come to rely on visual observation of the patient for diagnosis," I said.

"Yes, the radiologist!" Dr. Ibrahim exclaimed.

"The radiologist doesn't diagnosis patient ailments," I quickly chimed. "The radiologist only describes what he sees on the films. And if the prescribing physician -- the only person the radiologist will talk to about his findings -- doesn't know the significance of, say, a redundant cecum, sigmoid colon stricture or fat plane enhancement, the radiographs are a waste of money."

Dr. Ibrahim had hit on an emotional wound with her attempt to pin the responsibility for diagnosis on the radiologist. She had scratched open a reminder of all the fruitless effort I put forth to get my doctors and any radiologist to explain the meaning of such findings written in my CT scan reports. All I found were wounded egos and walls to save face in the wake of measures set up to protect one's behind.

I proceeded, "Because my untreated ailments are polymicrobial and have eluded diagnosis and treatment by dozens of doctors, I have been trying to secure a physician who will work in conjunction with National Institutes of Health physicians within the Office of Rare Diseases Undiagnosed Chronic Disease Program so that I can be admitted to the program.

"The goal of the Undiagnosed Diseases Program is to provide answers to patients with conditions that have long eluded diagnosis. One of the main criteria for acceptance is for the patient to have a private treating physician who can converse with the physicians at NIH and who can continue treatment outside of the NIH when, and if, NIH doctors can diagnose what's going on and determine the best course of therapy. Is this something you can help me with?"

Dr. Ibrahim responded that she would have to check with PartnerMD's administrative offices on this.

"I tested positive for HHV-6, a virus which infects T lymphocytes" I went on. "This nerve demyelinating condition causes decreased memory due to loss of myelinated nerve fibers in a particular area of the brain called the subcortical white matter projections. In individuals with compromised immune systems, reactivation of HHV-6 can result in the suppression of bone marrow and inflammation of the tissues of the brain, liver or lungs. The Wisconsin Viral Research Group, Ltd. found that HHV-6 associated disease has been successfully treated with antiviral medications. Would you make an effort to find out which antivirals were effective against HHV-6 infections and prescribe this medicine or would you have to refer this to a specialist?

"I'd probably have to refer a specialist," the doctor said, then asked, "This Wisconsin Viral Research Group. Is that a laboratory?"

"I'm not sure," I responded. "I'd have to look it up on the internet."

"I understand you do nutritional testing from the information I got off the internet," I said.

"Not nutritional testing," Dr. Ibrahim corrected. "We have a dietician who reviews patients' dietary needs and gives advice."

"Oh," I remarked somewhat caught off guard and disheartened upon realizing that I had assumed, maybe hoped, that MDPartners was something different than what I was finding. Dr. Ibrahim instantly picked up on my reaction.

"You know," she said as she began searching her computer for contact information."I think you'd be better off seeing Dr.Levin. He does the kind of nutritional profile I think you're referring to. One of my patients sees him. He measures amino acid and other vitamin and mineral deficiencies. We don't get into that level of detail..." She provided me with his address and phone number. I thanked her.

"Just one more question before I go," I said. "It's an ethics question I'd just like to know if you don't mind answering given that your firm advertises patient advocacy. How would you handle a situation in which the patient discovered that the biopsies taken during a procedure were taken from an area other than the documented photographed area of abnormal tissue? Would you discuss this with the specialist who made the mistake? During my colonoscopy in 2005, the gastroenterologist photographed and documented in my medical records abnormal colonic mucosa in the sigmoid colon. The pathology report indicated nonspecific inflammatory specimens were taken from the descending colon."

"Well the descending colon is connected to the sigmoid colon. It's possible he took specimens at the juncture..." she responded.

"The abnormal mucosa was mid-sigmoid," I said.

"Mid-sigmoid," she repeated then went on to say how pathologists aren't aware of where in the body specimens they examine come from. She said they just get this tissue, which they view under a microscope to determine a pathogen...It was an obvious attempt of one doctor to cover for another in the profession. Every pathology report I have pinpoints exactly where in the body the tissue being examined came from.

"This is an ethics question," I said. "Assuming I have labeled copies of the photos from the colonoscopy showing the abnormal mucosa mid-sigmoid and the pathologist's report stating specimens were taken from the descending colon, would you point out the discrepancy to the gastroenterologist or would you leave it up to the patient to do so?"

"Well, I'd frame it in such a way as to avoid making the gastroenterologist defensive," she said. "I'd probably ask him when he plans on performing his next colonoscopy."

What Would You Change About Medical Care?

2008-12-17T22:47:00.005Z

I would approach healthcare delivery like it was a brand new business. Wipe the slate clean. The first order of business would be to design or conceive of the product or service. Let's consider outpatient care first.

I would design a center in which internists and specialists from various fields worked together to diagnose a patient. All would be required to know how to read radiographs. All would have access to the same test results. All would be required to consult each other and come up with a comprehensive diagnosis before the first prescription was written.

This would prevent a patient who started taking medication prescribed by one doctor from skewing test results ordered by the next specialist, seen weeks later. This would lead to faster and more accurate diagnoses since specialists are trained only to look for disease within their respective fields.

Utilizing the combined knowledge of all specialists upfront would drastically reduce the number of specialists who unsuccessfully treat a patient's secondary symptoms while the root cause of disease goes unaddressed. This would cut down on administrative paperwork, duplicating tests, gas mileage driving to all the different specialists' offices and drastically reduce overall cost. This would lead to greater patient health outcome and satisfaction.

Liability for patient welfare would rest equally on the shoulders of each member of the diagnosing team, hence creating an internal peer review check to reduce errors. However, should a patient file a medical injury case against the group, the case would be heard by a "health court," a special court set up to handle medical injury cases. As conceived by Common Good and the Harvard School of Public Health with the support of the Robert Wood Johnson Foundation, health courts would feature:
1) trained judges with expertise in health care,
2) neutral experts retained by the court to assist the judges in making decisions about the standard of care,
3) a schedule for non-economic damages based on patient circumstances and the severity of injury.

Again, this would greatly reduce overhead costs and curb the practice of defensive medicine that unnecessarily drives up health care costs. These same initiatives could then be applied to inpatient care on a larger scale.

Now that we've devised a "product" that provides health care at half the current cost, increases efficiency, improves patient outcome and satisfaction, we need to find a way to fund the system whereby the maximum number of dollars stays in and works for the system. This would suggest setting up a nonprofit venture which could be a government-backed private enterprise. The mandatory difference would be in setting up a business in which the focus remained patient-centered rather than shareholder-profit-centered.

Is Capitol Hill Causing Chesapeake Bay Mycobacteriosis?

2008-12-08T21:54:00.001Z

Today Kojo's Show highlighted the 25th anniversary of the effort to restore the environmental health of the Chesapeake Bay by featuring experts from The Chesapeake Bay Foundation and the Chesapeake Bay Program. Toward the end of the program, I was glad to hear in the experts' voices the passion and outrage that led them to the realization that the only way to affect change was by suing the EPA for nonperformance under the Bush administration. Today the Chesapeake and its tributaries are every bit as much at risk as they were in 1983.

Recently scientists at the Virginia Institute of Marine Science conclusively linked a virulent strain of a mycobacteriosis to the death of more than half of the striped bass or rockfish in the Chesapeake Bay. The AP report went on to say that although the disease was first detected among bay rockfish in 1977, its virulence was not apparent because the fish weren't dying in large numbers. That's because species of mycobaterium are very slow growing. Mycobacteriosis infection is symptomatically non-specific and often goes undetected for years. This recognition delay enables the infection to invade deep into soft tissue and bone over time. The result is a gradual depletion of the fish reservoir as the hosts drop out of the population one by one.

The report caught my attention because Actinomycosis, my self-diagnosed still untreated illness, is a mycobacterium though not the same species that affects fish. I also remembered getting seriously ill about six months after a day of boating on the Potomac River. In humans the incubation period for mycobacteriosis is two to four weeks, but it can take up to nine months to develop disease. I needed to know more.

According to the Virginia Institute of Marine Sciences' (VIMS) website, mycobacteriosis is a generic term that describes diseases caused by a group of bacteria (simple single-celled organisms) known as mycobacteria. Mycobacteria are widespread in the natural world, particularly in aquatic environments. Some mycobacterial species cause disease in animals and humans. Mycobacterium shottsii is the type most commonly associated with the current outbreak of mycobacteriosis among striped bass in the Chesapeake Bay. The extent to which other types of fish may be infected is undetermined because it hasn't been studied. I wondered if the infecting pathogen could be in the water, not just the fish.

The VIMS site goes on to say that concern over the human health risk is warranted because M. shottsii is closely related to M. marinum, a species responsible for mycobacterial infections of skin and soft tissue in humans most commonly associated with contaminated water, such as can be found in poorly chlorinated swimming pools. M. marinum is also considered the primary cause of mycobacteriosis in fish aquaria and hatcheries.

In humans, deep tissue infection from these gram-positive, pleomorphic rods causes considerable damage to the underlying tissues, tendons and bone and can involve dermatitis, arthritis, bursitis, osteomyelitis and tenosynovitis. Systemic infection in immuno-compromised persons can result in death.

So, I thought, the next logical question is what's causing the water contamination and where's it coming from? I researched more. I found that whatever is polluting the Chesapeake was coming from the polluted rivers and tributaries that flow into the Chesapeake. I also found that stormwater and raw sewage overflows are the main source of pollution to the Anacostia, the Potomac, the Susquehanna, the Shenandoah and other rivers and tributaries that also serve as the source of drinking water for surrounding communities.

Many older communities like portions of the District of Columbia have combined storm water and sanitary sewer systems. Both sewage and stormwater are carried in the same set of pipes. So in addition to the runoff of nitrogen, phosphorous, oil, heavy metals, bacterial and viral laden raw sewage is dumped directly into our rivers. To add insult to injury, during heavy rains or when snows thaw, the volume from the storm sewers overloads treatment plants and more untreated sewage is discharged into our local waterways. It's estimated that each year some 3 billion gallons of raw sewage flows directly into the Anacostia and Potomac Rivers. Bacteria levels in these discharges are thousands of times over safe limits, making it unhealthy to swim, fish or even boat in area waterways.

At the end of 2004, a federal court settlement required the District of Columbia Water and Sewer Authority (WASA) to curtail the discharge of these billions of gallons of overflow by building large underground tunnels to store the sewage and rainwater until storms subside and it can be pumped to Blue Plains for treatment. However, completion of the first tunnel won't occur until 2018, and other tunnels aren't scheduled for competion until 2025.

In August 2008, operators of the Chesapeake region's largest sewage treatment plant, Blue Plains, filed a federal court challenge to pollution limits imposed on it by the U.S. Environmental Protection Agency (EPA). In its court challenge, WASA opposed the nitrogen discharge limits in the Chesapeake 2000 Agreement, signed by the EPA, five Bay states and the District of Columbia. Want to bet whether WASA will file another suit to get out of building the underground "holding" tunnels?

Clean water is among the fundamental necessities that defines a country as developing a developing or a developed nation. The consequences of continuing to turn a blind eye toward the proliferating rampant pollution of area streams, rivers and the Chesapeake Bay from raw sewage dumping is already reflected in the re-emergence here of such diseases as tuberculosis, a mycobacteriosis. In reading articles written over the last decade regarding failed attempts to curb water and air pollution, it's no wonder our fish, crabs and oysters are diseased and depleted.

It's a stretch, but the image of the White House and U.S. Capitol within the portion of the District using the combined stormwater and sewage drainage system says a lot about our elected officials' priorities and what they really think of their constituents. Perhaps if we could show their actions using the combined drainage system as somehow making them liable for harming people by polluting our drinking water, they'd give additional consideration to adopting home rule legislation.

I hope President Elect Barack Obama includes in his stimulus package money to refurbish our cities' aging and obsolete drainage systems to protect our drinking water. This stimulus could move up timing of the construction of the District's underground "holding" tunnels and needed repairs and upgrades to Blue Plains Wastewater Treatment Plant by making the task a combined private-public endeavor. If you agree, a letter to your Congressional representatives might help make such thinking reality.

I don't know if my boating foray on the Potomac River contributed to my decline in health. I suspect that my gastrointestinal problems that led to my systemic infection are much more long standing and started at an age before I could even remember. It's not uncommon for disease to remain subclinical for years before the immune system is finally overwhelmed and gives in. What alarms me most is that our area doctors and marine biologists don't seem equipped with the knowledge of how to recognize or deal with either human or marine infections from these pollutants. Not only are we doing nothing to curb rampant pollution, we're doing nothing to deal with the health repercussions caused by these pollutants. All too often I found that our area doctors do the same thing VIMS advises fishermen to do if they catch an infected fish. Throw it back into the water.

If our legislative, judicial and enforcement systems are so lame as to intentionally cause humans harm and suffering, they should at least pass legislation making euthanasia legal. We play out these protracted, wasteful and expensive court battles that amount to little more than liar's poker over rulemaking in the name of justice for all because that seems to be the only way to affect change. How's employing tactics to delay a much needed expenditure that affects our health and welfare considered justice?

I hope President Elect Obama initiates legislation that, for the benefit of protecting our health and welfare, negates the need to delay action through a lengthy court battle and puts some teeth back into EPA jurisdiction. Without such action, I guess America will remain a land for the entitled like India, where its people get the defense they can afford. America will remain a land where the Judicial system favors those with the means to keep uping the anty so they won't have to pay for doing the right thing.

Getting Depressed

2008-12-06T03:14:00.006Z

Well, since only one person responded to my blog post requesting advice for getting treatment and an "official" doctor's diagnosis, I thought I'd share recent advice and the outcome so far.

One person on my blog suggested that I call rather than just e-mail the Patient Advocate Foundation (PAF) in Newport News, Virginia. I had emailed them and gotten an automated e-mail response that stated that their policy is to only assist patients that have a doctor's diagnosis. They don't help patients get a diagnosis or help patients whose doctors don't have time to look at test results.

So I called PAF the day before Thanksgiving. The person answering the phone took my information and request for help to find a doctor who knew anything about actinomycosis. A week later I was assigned to a case worker. She informed me today that PAF does not help patients who don't already have a doctor's diagnosis.

I also spoke with a supervisor, who was really very nice and sympathetic and who reiterated that her hands were tied by PAF policy and so PAF could not help me. She gave me the name and address of the chief executive officer, Nancy Davenport-Ennin, to write. The address is Patient Advocate Foundation, 700 Thimble Shoalas Blvd. Newport News, VA 23606. Perhaps you could write her a letter on my behalf since the Social Security Administration accepted my radiologists', pathologists' and lab test results with no outside doctor assistance in awarding me disability on the basis that my infection had progressed to the point that my spine had severely degenerated.

Here's another suggestion. This one from James Bona in the FDA Office of the Commissioner. I got his name from Working With Your Doctor, a book by patient advocate Nancy Keene. He suggested I contact Steve Groft, who heads up the NIH Office of Rare Diseases and its Undiagnosed Diseases Program. Unfortunately, you need a doctor's referral to be admitted to the program, and he was unable to convince any of the infectious diseases doctors at NIH to see me.

There's more, but I'm too depressed tonight to write about more rejections right now. Suffice it to say that all roads lead to the necessity for a doctor's referral. But I can't get a doctor's referral because the presentation of actinomycosis is non-specific. So unless the doctor knows about this rare disease, he doesn't think the patient is ill. You'd think the redness around my eyes would be a big giveaway.

Anyway, it seems no one except the Social Security Administration and my neighbors believe that I am very ill. Or maybe people believe me but can't face the fact that when doctors play God it sometimes can cause someone's death, or worse, years of needless pain and suffering first. They don't hear their own excuses: "Not my specialty," "No time to read reports," "The need to save face," "The need to protect against malpractice suits," "Lack of knowledge," "Group Think." It's a catch-22 death sentence. I really don't know how much longer I can ride this roller coaster of hoping the next person I ask for help will say yes only to be dashed back downward in my struggle to find competent medical care. This has been going on since 2003.

The Story #16: The Public Radio Talent Quest

2008-11-26T07:02:00.019Z

If I was asked to name the character I most resembled, I'd have to say Dobie Gillis for how I think. For you Gen-Xers, Dobie was a character in a TV sitcom that aired from 1959 to 1963. During the first season of The Many Loves of Dobie Gillis, Dobie would begin and end the episode sitting on a park bench posed like Auguste Rodin's statue, "The Thinker" -- leaning forward with one elbow and one forearm balanced on one leg and his chin resting on his fist.

I was in this same position on the toilet when I decided to enter the Public Radio Talent Quest on the last possible day to enter. NPR had been promoting the contest run by the Public Radio Exchange (PRX) for months in 2007. Its goal was to find three new on-air radio hosts and develop pilot shows that showcased their talent.

Being ill with no radio experience whatsoever and being a mediocre speaker at best, I didn't consider participating in the endeavor until that last day. Oxygen deprived and having a tough time breathing, I decided just then to chance an entry as an attempt to bring my plight and others' difficulties obtaining medical care to the forefront. Then maybe, I thought, some kind soul would take pity on me and offer some assistance. I knew before I even started that I wouldn't make it beyond the first cut. I hoped I would do better, but I knew I didn't have a clue of what I was doing.

I drafted my two minute spiel based on a mock radio show about patient and doctor health care experiences. Actually my presentation was a bit more biased in favor of patients as evidenced by the description: "The show is based on a three-year investigation into the workings of today's obsolete health care system in which I personally encountered Alice-in-Wonderland practices instituted by lawsuit-shy doctors who appear to be on strike."

Then I practiced recording the spiel without errors within the two minute allotted time frame. Who knew about editing or how to best insert music for dramatic effect? There was no time to learn. The submission deadline was only a few hours away.

To say my technical adeptness is below par is an overstatement. It's below below par, and the cognitive dysfunction my illness was causing didn't help matters. My DFX or digital effects gizmo kept reverting to cave echo, so my recording sounded like what you would imagine Moses might have heard on the mount when God gave him the Ten Commandments.

I'd reset it, re-record and the same confounded cave echo showed up. I quit at 13 takes because I thought I had run out of time. I found that if I turned the volume down on the recorded bit, I could get rid of the echo, but I was barely audible. With minutes left until midnight ET, I went with what I had and uploaded.

Imagine my dismay when the time stamp for my submission came back as 10:52 pm. That's because, I later found, that the contest entry deadline was CT, not ET, because the server was physically located in the midwest. Contest rules didn't specify a time zone for the entry submission deadline, and I swear, the contest question facilitator had indicated when asked that the time deadline was ET. I could have used that extra hour -- not because I thought I'd have a winning entry, but because with a little more time I could have had an audible entry.

As it turns out, whether a listener could or couldn't hear my audio entry became a point of contention among the handful of commenters. One commenter complained he couldn't hear me. The next commenter defended my audio and snapped back, "I heard her loud and clear!" and so on. That anyone would defend me made me feel all warm and fuzzy inside. It was a good feeling. In fact, even though I didn't make the first cut, the whole attempt was worthwhile just for the comments.

I never really understood why contestants were urged to get points by commenting on others' audios. I suspected it had something to do with the quasi-American Idol style peer vote in choosing a winner. For some reason, I assumed the judges would actually read the comments to get a flavor of the entrant's temperament or some indication of how the contestant would handle himself on air as a talk show host. So I pretended each commenter was the show's next caller, whose question or comment I would respond to.

I used the forum as a means to convey some of the experiences I've written about in all these blogs -- my experiences going from one doctor and test to the next. I also incorporated humorous anecdotes and stories to lighten such a dark subject.

It was therapy for me. It revealed to me just how angry I'd become at being in my 50s, having lost everything I worked for my whole life, including my health, and having nothing to show for my effort. I found that when you don't know what's upsetting you, emotions come out sideways. It made me take a hard look at what really mattered to me. I realized I needed to let go of what I thought my life was supposed to be about and just be. Here are some of what I and others wrote:

Doctorblue...
The entry heralds a presumed Thursday talk show on healthcare delivery. The premise is based on a three-year investigation into the workings of today's obsolete system in which I personally encountered Alice-in-Wonderland practices instituted by lawsuit-shy doctors who appear to be on strike.

The dysfunctionality of
Submitted by David Erickson on May 20, 2007 - 10:14pm.
The dysfunctionality of American medicine is a terrific topic, and when I think about it, I'm amazed there isn't already a regular NPR show for this. Well done.

Health Care - Not Medicine
Submitted by motoole3 on May 21, 2007 - 12:45pm.
Healthcare and Medicine are not the same thing! If we stop using these terms as if they were identical, we might begin to see changes in the health care system-

Healthcare v Medicine
Submitted by asgardiner on May 21, 2007 - 3:05pm.
Appreciate your input but I'm confused. Wikipedia defines medicine, in part, as "the sector of public life concerned with maintaining or restoring human health through the study, diagnosis, treatment and possible prevention of disease and injury." Wikipedia defines healthcare as "the prevention, treatment and management of illness and the preservation of mental and physical well-being through services offered by the medical, nursing and allied health professions." Perhaps you would care to expound on your comment to prevent misuse of the terms. Thanks

Couldn't hear you!
Submitted by layna berman on May 21, 2007 - 9:44pm.
Your voice is so quiet. We cover stories like yours on our show, Check us out on our website!
www.yourownhealthandfitness.org

Not the same topic
Submitted by asgardiner on May 22, 2007 - 7:38pm.
Thanks for listening and commenting on my audio. I checked out your website, however, those stories seemed to focus on health issues. My concept is quite different. The intent is to create a forum to improve communication between patients and doctors to encourage change in the way healthcare is delivered. John Hockenberry and a few others have done pieces focusing on how changing the way hospitals operate improved patient/doctor satisfaction/morale cost effectively. I want to expand this concept to non-hospital patient care. Like me, there are huge numbers of Americans whose non-diagnosed inflammatory, autoimmune and other systemic illnesses rendered them disabled needlessly. The reason: neither conventional nor alternative medical doctors working alone know everything they need to know to competently treat illnesses affecting the entire body.

Very important topic
Submitted by Shanna on May 21, 2007 - 11:07pm.
I could hear you! I think a show focusing on health care and the world of medicine is a crucial topic for today's world. Glad you are thinking and talking about it.

couldn't hear you, but good concept
Submitted by boehmen on May 22, 2007 - 9:24am.
Hi,
I was intrigued by your concept, but could not hear you. Maybe something got screwed up on your audio. You might need to be a bit more objective, if your show goes, however.
Good luck.
Bob "Heart Works" Oehmen,
Chicago, IL

Input noted
Submitted by asgardiner May 22, 2007 - 7:07pm.
Thanks for listening to my audio, which (you guessed) was a technical conundrum put together way too late. The concept is based on my personal experience and that of other patients I met in my three year quest for competent medical care. What do you do when you can't find a doctor knowledgeable enough to diagnose your illness? After seeing 40 doctors, some multiple times, I ended up with reams of test results showing all kinds of maladies but no comprehensive diagnosis or treatment. Then I ran out of money and insurance. And its happening to more Americans than you can imagine. You wonder why we have high medical costs. Thanks again for your input.

Thoughtful
Submitted by Schup57 on May 22, 2007 - 1:30pm.
Certainly subject matter worthy of dialogue; thanks.
Schup57

My wish
Submitted by asgardiner on May 22, 2007 - 7:44pm.
If my dream ever does come true for developing a forum to encourage change in the way healthcare is delivered, my wish is to incorporate humor in the dialogue at least as well as you did in your audio. Thanks for the input.

Terrific!
Submitted by Craig Parsons on May 23, 2007 - 2:20pm.
A great voice and a topic that is long overdue for some serious discussion. Brava!

I could use your talent
Submitted by asgardiner on May 23, 2007 - 7:43pm.
Thanks for the encouraging words. Checked out your audio. If I ever get things lined up, you'd be a welcome asset. Doctorblue

As you can see from the
Submitted by Katie Ball on May 24, 2007 - 9:55am.
As you can see from the forum discussions-- this is a much needed topic for a radio program.
Best of luck to you!
-kb

Nice
Submitted by brendan70 on May 24, 2007 - 11:12pm.
What I like most about the clip was that you made your points and made it sound like a fun show to hear.

My mentors are Click & Clack
Submitted by asgardiner on May 25, 2007 - 12:33am.
Fun and funny! How can you talk about things related to bodily functions without at least a smile? Appreciate the comment.

Important!
Submitted by rebeccawirtelkbcs913 on May 25, 2007 - 2:47pm.
The info you presented is necessary to our lives,so thank you. I really like your idea of having doctors on the show and you offer crucial facts to health consumers. How you presented it was a bit crptic and even depressing(?). Use your voice more, give us your "feelings" on this. Also, be sure to offer the listener an alternative that gives choice. I think this is essential to helping people making lasting changes.
Rebecca
Whatever you vividly imagine, earnestly desire and enthusiastically act upon must inevitably come to pass.

Critique welcome and on target
Submitted by asgardiner on May 26, 2007 - 11:50am.
I'm rethinking ways to present the topic with more humor. The topic will have greater acceptance with no less impact if approached as a parody. And I know there are people out there that adore their doctors. I did too until I became really ill and realized the system's inadequacies. The more time that passes, the more accepting you become. My fear is that I won't be around to complete my dream. For more on this topic, check out Personal Advice in forum topics: http://www.publicradioquest.com/node/2114.
-doctorblue

You are not the only person with this type of horor story
Submitted by TheGreatWhiteBuffalo on May 27, 2007 - 9:25am.
There are many of us that have some experience with dereliction of duty by others. Be they doctors or lawyers or officers of the court. You are on the right path to enlightenment to help others tell the truth.
Peace and Blessings,
Sincerely,
Gary

Thank you
Submitted by asgardiner on May 30, 2007 - 2:20am.
It seems strange there is solace in knowing you are not alone in encountering injustice.
-Doctorblue

Doctorblue
Submitted by hulagirl on May 29, 2007 - 8:16am.
No trouble hearing you - really hearing you. Your topic is compelling not only because some of us have already experienced the same frustration during elderly parents' illnesses, but because most of us (I fear) are doomed to have the same experience unless we can change the process. I feel badly that your focus on this issue is due to your own personal experiences, but applaud you for turning that into a positive effort to provide a forum for discussion. Good luck!

A word from Al Gore's new book
Submitted by asgardiner on May 30, 2007 - 2:17am.
Thank you very much for your comment. It reminded me of a quote from "The Assault on Reason" by Al Gore. "The persistent ...reliance on falsehoods...even in the face of massive evidence to the contrary, seems...to have reached levels that were previously unimaginable." Gore argues that America's citizens have become apathetic at a time when our environment is deteriorating. I have to admit, until I was forced to face the state of U.S. healthcare delivery by becoming disabled, I was too busy to notice what was going on around me. How can we be expected to participate in civic responsibilities when we have a career that requires more than 40 hour work weeks, commitments for time with our spouses and children, household responsibilities like shopping, preparing meals...I'm sure you know the drill. Plus we're bombarded with rigorously marketed fairy tales that I believed. Tales that transcend doctors to all-knowing god-like authority figures you wouldn't dare challenge. With everything from vaseline to all prescription medicines carrying a warning to consult your physician, my god, they must know everything! They must have some secret or magic way of keeping up with the latest science, FDA recalls and the ability to assess one's health in five minutes or less -- all while raising families, heading households and simply carrying on the American way. Some can even assess your health from five feet away. It's astounding!

In all fairness, we should give our dental professionals equal time. I'm a little confused about when my teeth got more rights than me, though. On three separate occasions, I had to have teeth extracted because, as one dental surgeon explained, the inflammation from my sarcoidosis spread to my bone and infected the pulp in these teeth. Dentists, it seems, are unaware of this phenomenon because in each instance, I had to see an endodontist and have a $1,000 root canal before I could receive the necessary referral to an oral surgeon for tooth extraction. (Oral surgeons don't understand and dislike this procedure because in very little time root canals make teeth brittle and difficult to extract. Extractions take much longer because the tooth breaks up into tiny pieces during the extraction process.)
An endodontist told me many dentists don't know that X-rays don't show tooth pulp. Dental assistants tell me many dentists take only bitewing radiographs looking for decay coming from the top or side of the tooth, not from the root. Some dentists do take panoramic radiographs which show tooth roots but in widely varying degrees of quality.

In my case, I had a panoramic X-ray clearly showing the tooth root sitting in a pool of infection, according to one oral surgeon. He said he didn't understand why the dentist didn't detect this outright. When I repeated the oral surgeon's comment to my dentist, he said that was not a fair comment for the oral surgeon to make as "it (detecting infection) may be clear for someone who sees this type of X-ray regularly," but general dentists don't. (Huh?) My dentist is listed as one of Washingtonian Magazine's Top Area Dentists.

As you can imagine, having an impacted tooth for one to two or more weeks while you wade through seeing all the different dental professionals before you can have your tooth removed is not only costly but quite painful. Sigh, like the doctors I saw, the dentists "can't see anything" and won't prescribe pain medication. In turn, the specialists won't see you without a dentist referral. I found that the typical wait for an "emergency appointment" is from two days to two weeks depending upon the schedules of the various specialists at the time.

They say that some people who have undergone limb amputations can still feel pain in the area of the amputation. The lower left gum where I had two extractions and a bone spicule removed still aches as does the gum immediately above.
-Doctorblue

Doctorblue
Submitted by speanut on May 30, 2007 - 3:59pm.
Sorry to hear that you are personally experiencing these issues. We (my husband and I) have experienced the same. He is a chronic suffer of back pain. We have been to so many types of doctors in the last 4 years, both modern medicine and alternative medicine. We have come to no succinct conclusion, only to do the best that he can to manage the pain. A much needed topic. Good Luck!

People suffer needlessly
Submitted by asgardiner on June 1, 2007 - 2:56am.
It's my belief that many people suffer from back pain needlessly. Pain is caused by infections that aren't detected by modern medicine. These infections fester in the body allowing inflammation to snowball sometimes even reaching the bone. I'm speaking from experience.
The following synopsis is a bit technical and is intended to be directed toward physicians to demonstrate two points: 1) undetected infections can kill, and 2) it takes teamwork to come up with an accurate diagnosis. The discussion includes links that note the connection of the relative finding to cancer.

A physician's assistant told me that she occasionally went to an atlas orthogonist, which is a specialized chiropractor who uses a special technique for aligning the free floating atlas (the first bone through which the spinal cord passes). If it is out of alignment, it affects nerve impulses through the spinal cord and restricts the flow of blood to the head and brain. The trauma of passing through the birth canal or a fall can cause the atlas to misalign.

The theory behind atlas orthogonal chiropractic is that once the atlas is aligned, the rest of the vertebra self adjust as in a chain reaction (think dominoes). Radiographs showed my atlas had shifted to the right thereby closing off a portion of the spinal cord opening. After atlas adjustment, I experienced some sinus drainage, but the chain reaction that was to occur encountered roadblocks at a spot between the shoulder blades and another at the lower back. Movement became increasingly difficult. My theory is that because my condition had gone on for such a long time undiagnosed, inflammation was preventing these discs from adjusting on their own. Manual chiropractic adjustments provided instantaneous relief, but didn't hold beyond a day or two.

X-ray of my cervical spine taken in spring 2005 was positive for spinal cord compression syndrome. (The discs about my neck were fusing together.) PA and lateral chest X-rays showed anterior degenerative spurring present at multiple levels within the thoracic spine. Impressions also showed cervicobrachial syndrome, lumbago and subluxation of C1 and T4.
In 1977, I was hospitalized with an infection in my right kidney. Abdominal, pelvic and transvaginal pelvic sonograms taken in May 2005 showed mild fullness of the right renal collecting system and the right renal pelvis prominent in size, which the report states, may be related to reflux but "obstruction cannot be fully excluded."

(In some diseases, epithelial cells desquamate into the renal tubule. As the cell degenerates, the fatty deposits in the cell join with protein to form fatty casts, which are associated with nephrotic syndrome/nephrosis. Epithelial cells can conglomerate into tubular granular casts suggestive of glomerulonephritis with adenomyosis. I was seeing a chiropractor for years for arthritis which turned out to be pseudogout (low uric acid blood level, calcium pyrophosphate crystals). At one point, the pain in my mid-back was so severe from amassed crystals passing through the kidney, I called my primary care physician pleading for pain relief. He said no.
You should know radiographic dyes may cause precipitation of crystals. Calcium phosphate and oxalate crystals occur in urine of patients with malabsorption states or parathyroid abnormalities Tests showed I had both.

I was surprised to find that it is not uncommon for such abnormalities to be missed by the standard urinalysis conducted in a doctor's office. Lab refrigeration, culture and microscopic examination of the specimen only takes place if urinalysis indicates infection. I was unaware that it is common practice to strip test a room temperature urine sample only after any debris or casts settle. Crystals are part of the casts that break up as urine sits, and therefore, go undetected. In addition, urine ph becomes alkaline upon standing because urea splitting bacteria produces ammonia. Urine ph of an uncovered specimen becomes alkaline because carbon dioxide vaporizes into the air.

I obtained the most useful information about my condition from the results of more expensive and more detailed specialized tests with which most of the doctors I saw were unfamiliar and unwilling to consider. For instance, a Doctor's Data stool specimen study showed an elevated abnormal level of secretory IgA (central to the normal function of the GI tract) and elevated lactoferrin (a biomarker of inflammation indicative of conditions such as Crohn's Disease and Ulcerative Colitis.)

The operative report for colonoscopy shows diffuse inflammatory change with ulceration and friability consistent with left-sided colitis along with small internal hemorrhoids. The gastroenterologist prescribed Asacol to dissipate the mucoidal plaque buildup in my intestines. At the follow up consult, the gastroenterologist told me that the colonoscopy revealed ulcerative colitis with fistula formations but that he tailored the operative report to show only non-specific colitis to avoid the potential of patient medical insurance cancellation.

The operative report states the patient tolerated the procedure well. I could hardly move for the next day and a half as the air that was pumped into my intestines during the procedure slowly dissipated along with the gas pain. I felt like I was a big South Park Kenny floating air balloon gradually deflating and falling back to earth. I was extremely nauseous.

This was the year scientists won a nobel prize for discovering H pylori. Since I had been hospitalized in 1983 for bleeding ulcers, I asked to be tested for H pylori. The test was positive.

I've suffered from chronic constipation ever since I can remember. However, many physicians don't consider this a serious complication. They insist a suppository, laxative or increased fiber and water will take care of the condition. They quickly switch the discussion to inquiries about occurrences of diarrhea.

Abdominal and pelvic CT scans taken before and after the colonoscopy note a possible severe level of constipation along with decompression of the descending colon and prominent small bowel loops. Further evaluation to exclude an underlying obstructing mass was recommended.

The SBFT or Small Bowel Follow Through X-ray series ordered to address my concerns of slow food transit (motility) showed a tangled mass near the cecum in the small intestine on the tv screen during the procedure. The physician completing the test displayed increasing angst over the barium's refusal to move beyond the mass. I had to keep walking the halls of the hospital in between X-ray sessions in order to get the barium to move through to the large intestine. To keep warm as I walked, I draped multiple blankets around the skimpy patient hospital gown I was wearing. I looked like I was wearing a ridiculous bulging toga.

During the last few X-ray sessions, the attending assistant exhibited increasing anxiety over the way the physician was using the paddle on my abdomen to get the barium to move beyond the mass. His instructions for me to roll from side to side and from stomach to back made me feel like a flopping fish out of water. At one point the attending assistant remarked "You took that last beating well." My inquiries about what was on screen and the potential for a partial obstruction were met at first with such quips as "I don't know" to a later exasperation of "Look, I can't leave until the barium moves through to the large intestine" followed by his pulling the monitor closer to him and draping the monitor's black covering over his head so that I could no longer see the projected live radiograph images. His report findings read "no obstruction" in response to the gastroenterologist's order to rule out Crohn's Disease. I later found out that he was a per diem hospital physician filling in.

The above referenced test results are only the tip of iceberg. I have tons more to tell you if you need the information for diagnostic purposes. Hopefully, you're beginning to see the correlation of undiagnosed infection and cancer.
-Doctorblue

A Michael Moore-like Horror Story
Submitted by burkemancometh on June 2, 2007 - 2:56pm.
You know, it's great that there are people in the media who are willing to do the muckraking work on the medical field. Even though the medical profession is bourgeoning these days, there are still millions of people who don't have healthcare, and the Bush Administration appears to have done nothing about this. I bring up Michael Moore because I know he has a movie coming out soon about the healthcare crisis plaguing America. I know I'm going to be depressed as hell after seeing it, but it will be informative and hopefully, like Al Gore's "An Inconvenient Truth", promote some sort of change in society.

With that said, I think you have the right idea for your show, and it could be a show that could effectively combat what has become a societal crisis. So I think the idea you have for your show is fantastic. You confused me a little at the end when you said that you weren't a doctor, even though you call yourself "Doctor Blue". That could have used a little more clarification even though you had only two minutes to speak. I would have liked to have heard more about how you were affected by the healthcare crisis, and why exactly you decided to dedicate a whole show to how bad it is. It would have been very helpful and engaging to have heard your side of the story. But of course, there's only so much you can fit into two minutes.

But for what it's worth, what you have so far it a relatively good start subject-wise. I had to turn my computer speakers all the way up to hear you, but I certainly won't hold that against you. Good job otherwise.

Michael Moore Competition?
Submitted by asgardiner on June 2, 2007 - 6:41pm.
Thank you for the kind words. Just to clarify, one meaning for the word 'blue' is melancholy or depressed. I'm doctorblue because I'm depressed about how doctors are selling out the greater good of humankind. Take this week's conundrum over the Georgia attorney/tuberculosis patient who flew to Italy to get married even though he was on a U.S. no fly list. Authorities are now looking for some of the passengers on his flight to see if they were infected. And now the attorney's father-in-law who works at the CDC as a researcher engaged in research on tuberculosis is singing "It's All Right." In reporting the story the media is giving equal weight to this one researcher's contentions as previous tests that show this to be an extremely virulent strain. I guess we believe what we want to and what is convenient. This is not the first time there have been reports of patients with tuberculosis in the U.S.

Being disabled the last three years, I'm home and listen to NPR and the news all day long. I love how some newscasters just broadcast one story after the next as if someone is standing there feeding them lines. "Read this. OK, now read this. This is a funny story, so smile. This one is sad, so be serious..." Do they have any idea what they are saying? Do they think about how the news story impacts not only their life but the potential for affecting a nation or the world?

My aunt in Poland had tuberculosis. The microbe is extremely slow growing -- much too slow for the CDC researcher to have taken a current culture and have gotten the results he is telling us. By the way, do you think he has anything at stake -- like his family being quarantined?

You mentioned you wanted to hear more of my story. I have interspersed parts of my story within the comments here and on a forum called Personal Advice. (The links are below my signature.) In the story, there are a couple of examples of how easy it is to obtain false negatives on lab tests. I have an entire soapbox on why typical lab tests are unreliable. Believe it or not, I've obtained my information from doctors.

I'm willing to bet my life that there are doctors out there who know the truth but are scared to come clean. They're scared because whistleblowers are unpopular and end up jobless and broke. Americans don't like to hear news that makes them sad or depressed. They like to laugh, which attests to the popularity of all the sit-coms on TV. Hopefully, some are watching The Daily Show and The Colbert Report and are putting two and two together with the real messages Jon Stewart and Stephen Colbert put forth. Unfortunately, we all have this "What can I do? I'm just one person attitude." So we all continue to bury our heads in the sand and go about our business, that is, until things catch up with you and you end up sick like me, trusting an institution whose marketing efforts have brainwashed you into thinking of doctors as all-knowing gods. If they're so all-knowing, why can't they answer my questions with better answers than "Nothing I haven't seen before" and things like "Yeast doesn't travel alone?" I can't decode this doctorspeak, can you?

But this is how our politically correct Seinfeld syndrome society talks. Mustn't mention poop or fungus. Doesn't exist. Nasty. Well if you can't talk to your doctor about such issues, who can you discuss them with? Kids don't get head lice and pass it to one another? South Park did a show in which the kids of an entire class ended up with head lice, but they all pretended only one scapegoat kid actually had the head lice, and they were going to stone him.

And think of this. If you lived in Iraq today and the battles were destroying everything around you, preventing you from earning a living, would you join an insurgency so you could at least feed your family? Wake up white people! And I say white because that is the color of those in power -- our leadership who expounds the American way of carrying on as usual, as if there is nothing to be concerned about.

If you read through some of my stories, you'll see that I can say these things intending no harm nor ill will toward anyone because I feel like I have been tortured -- x-rayed to death. I don't wish radiation poisoning on anyone. It's like being part of a science fiction movie. You can't clean it up. And that's where we're headed. We ended one world war that way, why not another? No one's coming up with anything better. Let's all just start over on another planet. The rich folk who accompanied astronauts recently are probably scoping out the new neighborhood already.

One last thing. I believe Ross Perot was on to something with his cautions about jumping into the global economy. Why does everything have to be an extreme? You either do this or that? Is there no middle ground? Is there no smart way to participate in the global economy without sacrificing a nation's people by radiating all imported food or the imported ingredients of food manufactured in the U.S.?

I could go on and on but I feel it's useless. You've probably already marked me as some liberal loon fighting the establishment -- a throwback from the 60s. Maybe you'd be right. I'd like to see the House and the Senate come together on a pseudo bill that re-establishes the draft. Don't get me wrong, I'm against the draft. Been there. Wore the t-shirt. This is the only way you might touch American hearts to get them riled up enough to end this madness in Iraq and elsewhere.

I've said my piece for now. Again, I'm quite complimented by your allusion to being anywhere on the same plane with Michael Moore.
-Doctorblue

Your expression is
Submitted by ursabear on June 1, 2007 - 11:35pm.
Your expression is heartfelt, real, and human. I was engaged the entire listen.
I sincerely hope your future has warm bright stars and much peace. I'm glad you shared.
Jimmy
---
Heartfelt, Real, Human
Submitted by asgardiner on June 2, 2007 - 12:20am.
Who could ask for more? You're too kind. God bless. -Doctorblue

Personal Advice
Submitted by asgardiner on May 23, 2007 - 2:02pm. :: Off-topic discussions

What would you do if you were really sick and you couldn't get a doctor to diagnose or treat you? All you kept getting was a referral to another doctor and prescriptions for further testing. How many doctors should it take to get a diagnosis?

Well I trust the internet
Submitted by brendan70 on May 23, 2007 - 3:29pm.
I would go to web md and if that fails I would google my symtoms until something came up that kinda matches how I feel. Then go back to doctor A and tell him you think you have (insert google search result here) and see if he agrees. The quack was too lazy to diagnose you in the first place so make him look it up on google. Actually there was a book on John Stewart or the Colbert Report by a doctor about doctors and a section of it was how doctors if you press them when they do not know what is wrong will make up an anwser. If someone knows the name of the book, that may be the best thing to read and to get advise. At least it is written by someone that has a doctorate, not someone that plays a doctor.
Have glass of Pino Grecio, relax, listen to a few clips, and click a few stars!!!!!!!

I did the internet and book thing
Submitted by asgardiner on May 23, 2007 - 8:10pm.
Thanks for your advice. Really. Because I did what you recommended and brought my print outs to this one pulmonary cardiologist. His response: "You can print out the whole internet. I'm not going to change my opinion." I have a slew of different doctors' quotes for my upcoming website: "Stupid things doctors told me." This same doctor started answering his own yes-no symptom questions when I took more than two seconds to answer. A couple of times we chimed opposing answers simultaneously. I could go on...The book is probably How Doctors Think by Jerome Groopman, MD. I recommend it. His research is based on extensive doctor interviews and his own experience as both patient and doc. Thanks again. I love the emotional support. ---doctorblue

the bottom line
Submitted by chadbullock on May 23, 2007 - 3:48pm.
the bottom line is this: if you think something is seriously wrong with you...keep going to another doctor...keep pushing for diagnosis, and keep after a second opinion once you recieve it....because you could be a dead man walking and not even know it! dont play with your health...your just another patient to the doctor...he could probably care less if your really sick as long as your insurance keeps paying up that's all they care about!

so how many is enough?
Submitted by asgardiner on May 23, 2007 - 8:15pm.
Appreciate the input, but working on the assumption that all you will get is another doctor referral, how many doctors would you see before throwing in the towel or dropping dead?
-doctorblue

Working on assumptions
Submitted by brendan70 on May 23, 2007 - 9:19pm.
Well if the doctors are just turning out to be a waste of time, then try to find some sort of group that actually faces the same issues as you. They may actually be of help since it is easier to follw someone elses footsteps than it is to make your own.
Have glass of Pino Grecio, relax, listen to a few clips, and click a few stars!!!!!!!
mmmm...
Submitted by chadbullock on May 23, 2007 - 2:35pm.
after 2 doctors fail you, I would go to an out of town doctor....I live in North Carolina...in my home town doctors are idiots...so if they cant fix me on the first visit..then I go to Duke or Chapel Hill and see a doctor over there...they're some of the best doctors in the country...the same should apply to you...you know where to find an expert doctor or hospital with-in driving distance...

I hear you
Submitted by asgardiner on May 23, 2007 - 10:31pm.
I have great respect for both Duke and Chapel Hill based on relationships I developed with folk from there a long time ago.
-doctorblue

Nurses
Submitted by Sallyfranz on May 23, 2007 - 8:00pm.
Nurses have the dirt on everyone. They know which doctors are witch!
If you don't know any nurses, get thee to a well known clinic. Mayo, John Hopkins, Harvard Medical,etc.
I have transverse myelitis. My initial attack was at a ski area. They treated me for high altitude sickness for 2 days. Finally a docotor friend of mine asked them to get a neurologist. The expert diagnosed me in 5 minutes.
If it had been a few more hours I would be in a wheelchair, for life.
Take the bull by the horns, this is your life.
The experts on longevity say:
Get off all processed foods, stop using plastic wrap in the kitchen or microwave. Eat raw foods everyday.
No flour, no sugar, no alcohol,low carbs.
No sodas, no fake sugar, or fake milk.
Drink water,lots of water 10 glasses a day.
Shop for food on the outside perimeter of your grocery store. There is nothing for you (except maybe toilet paper, deo, and toothpaste) inside those rows.
Meditate, or if you're like me and a bit ADD, then watch LOTS of funny movies 4-6 hours a day.
Listen to your body. It is trying to tell you something.
Good luck, being sick is not worth the cards and balloons.
Sally
"Both faith and fear are the belief in things not seen." S. Franz

Very good advice...listen up, y'all
Submitted by asgardiner on May 23, 2007 - 9:54pm.
Thank you for your response and particularly for sharing your experience. I think it's very difficult for those who haven't experienced a major bout with their health to understand. You might imagine that being disabled, not working and being very concerned about my health during the last three years, I've amassed a small medical library of literature, all of which recite this advice, which I've been following with occasional indulgences (I'm human.)I was not aware of the plastic wrap, though, and I'm not sure what "fake" milk is. In fact, many sources encourage drinking rice or almond milk. Anyway, if you haven't heard Sallyfranz's audio, it's boss!
--doctorblue
p.s. Regarding Johns Hopkins, Mayo Clinic, etc. I haven't found one person who was treated at either facility or one doctor who recommends either. In fact, one doctor told me about a patient of hers with a systemic infection that went to Hopkins. When the requisite routine tests came out "normal," the patient landed in the mental ward. In fairness, doctors whose egos I wounded by quoting information from relevant published works did tell me that I should go see those doctors or to Johns Hopkins or the Mayo Clinic if I thought doctors there knew more.

If I were really sick and
Submitted by David B Erickson on May 23, 2007 - 8:27pm.
If I were really sick and couldn't get a doctor to diagnose and treat me...well, I'd probably stay really sick until I got better or died. Ever read Richard Hofstader's "Social Darwinism In American Life"? It seems that's where we are now: Those of us who survive are judged virtuous by reason of our survival. Oh well. Any sacrifice to avoid the evil of Socialized Medicine...

Get better or die on your own
Submitted by asgardiner on May 23, 2007 - 9:11pm.
Comment welcome. In fact, that's exactly what one infectious diseases specialist told me after running a CBC and blood tests for STDs. Even though the tests were unremarkable, he prescribed doxycycline (a member of the tetracycline antibiotics) which he said should cover anything missed. When I told him I suspected I was exposed to Stachybotrys toxic black mold and asked about prescribing Amphotericin B, he told me he had treated a couple of patients exposed to mold with IVs of Amphotericin B, and the bodily toll was worse than if they were doing chemotherapy. He was unaware that a 2% nasal spray of the compound is readily prescribed, relatively safe and very helpful for certain fungal sinus infections. And yes, I'm aware of Hofstader's acclaimed books.
A note on blood test reliability: as long as you have enough red blood cells - even if they're star-shaped, machine based count shows normal. And the applicable definition of normal is "average" as in the condition of blood of the average Joe. Have you seen "Super Size Me"? -doctorblue

It's absolutely crazy how often this happens
Submitted by Katie Ball on May 23, 2007 - 11:55pm.
I was misdiagnosed for about six years. I was "stressed," the pain was "all in my head." Finally, I ended up in the emergency room, the pain in my side was so bad. When the doctor finally arrived I was laughing. And he got really pissed. He said, "If you're in so much pain, why are you laughing?" I said, "I've been misdiagnosed for years--I've got more pain killers than Elvis and I took one while waiting for you!" The long and short of it, he was the one to mention endometriosis because I had kept a journal of the pain and symptoms (and it mirrored troubles his wife had had). I cannot stress the importance of proper note taking enough. If you are having trouble getting western doctors to think outside the box, do your homework, take extensive notes and don't take anyone's word with blind faith. If I had listened to one gyn I would have had a hysterectomy at 21. Now, at 36 I feel terrific and everything's still in tact. And like Chad said-- if you can't find a doctor locally who will really listen to you-- find another doctor. Also, acupuncture and eastern medicine is remarkable. Even if you only choose it to help boost what your western doctors are doing, eastern medicine can help get your body running on all cylinders.
Best of luck to you,
kb

thanks for sharing your experience
Submitted by asgardiner on May 24, 2007 - 1:37am.
I can't tell you how many times I've heard stories about what one doctor termed patients "making the rounds" before finding a doctor who was familiar with the patient's ailment. When they find this doctor, many of the women cry because finally -- after years of suffering -- someone is telling them that there is a physical reason for their pain and that they are not just crazy. Don't doctors realize that irregularities cause chemical reactions in the body that are toxic? If you let infection (pus) fester long enough, it eventually reaches the brain and causes secondary conditions like schizophrenia.
A former co-worker who suffered from migraines and epilepsy relayed the following encounter. This doctor diagnosed her ailments as psychosomatic best treated with anti-depressants. When she told her husband, a police officer, about the encounter, he insisted on accompanying her on a follow-up visit. Uniformed complete with holstered sidearm, he entered the doctor's office with his wife and proceeded to place his gun on the doctor's desk as he sat down, then said something to the effect of "Now tell me about this all-in-your-head diagnosis." The doctor proceeded to order a series of tests whose results prompted the doctor to prescribe medications recommended for epilepsy and migraine headaches. Anyone know where I can rent a cop?
-doctorblue

dr. blue
Submitted by chadbullock on May 24, 2007 - 8:05am.
I'm telling you, I'm actually getting concerned about you.....would you be up to sharing your symptoms with us?? sometimes the ordinary folks can give quite the accurate diagnosis...because we all have had our own medical problems and so has our family and friends....maybe we could help if we knew some of your symptoms???

Ready to bare all
Submitted by asgardiner on May 25, 2007 - 8:16pm.
What a sweetheart you are for caring. Really. I was considering posting as many medical test and imaging reports as practical on my yet to be designed website doctorblues.org along with a description of what actually transpired and was said by physicians during imaging and at follow up consultations. There are huge discrepancies for some of the reasons I mention in my audio http://publicradioquest.com/audio/user/6076 (ie: afraid dire health remarks will cause patient insurance cancellation, not wanting to ruffle feathers with referring physicians and cut off a source of income, worrying about malpractice suits if proven wrong, double-booking or being late for another appointment as a per diem hospital physician so there's no time to write more than two words on the report that don't even address the prescribing doctor's concern...and some of my all time favorite doctor beliefs: there's no such thing as an overgrowth of Candida Albicans, a component of everyone's normal flora; fungal yeast infections are solely vaginal and do not occur anywhere else in the body, and Americans who don't travel don't get parasitic infections.)(I guess these docs don't hike, swim or hunt.)

After three years of research, I have tons of information and a personal guestimate of what's wrong with me and what it's going to take to cure. The symptoms are the same as those that affected my close relatives, most of which died never properly diagnosed. My theory is that if you let disease fester in the body long enough, it not only causes secondary and tiertiary conditions to develop as the body tries to heal itself, it also causes cells to mutate into cancer...but I digress.
In keeping with the trend to try to get all of a patient's information together in one place to assist diagnosis, I am willing to make all of it available. I even have copies of my CT scans, MRIs and other radiographic films. Think of it as a virtual Seinfold episode. You know, the one in which Kramer acts out the symptoms of syphilis in front of doctor wannabees who have to guess what ailment the pseudo patient has. A contest of sorts. Perhaps we could pit the medical community against laypeople to see who can accurately determine what's wrong with me and how to cure it. Maybe there could be competition among medical universities...I haven't worked out the details and doubt the appropriateness of such a venture here. What makes seeking out the root cause of disease so complicated and time consuming is sifting through all the peripheral illnesses that occur as a result of the initial illness not being diagnosed and treated from the outset. I'd be interested in ideas as to how to go about partnering with an organization involved in getting patient health information online and accessible. I'll also welcome assistance from anyone who wants to help me with my website registered through go daddy. I already paid for all kinds of website services almost a year ago, but being ill, have not been able to take advantage of this.
-doctorblue
ps If I get my images online, the site will be X-ray Rated!

you might want to rethink referrals...
Submitted by mflewell on May 24, 2007 - 9:04am.
Referrals from one doctor to another is not always the best way to get an objective analysis of your condition. They all cover for each other and are not likely to "disagree" with what a colleague's (eg, the referring physician's) presumptive diagnosis (or lack of one).
I almost died last summer from sepsis at one of the best academic medical centers in the country. Long story, but basically, I developed a severe infection, but they could not figure out what "bug," so despite them pumping me full of bag after bag of antibiotics I was going downhill fast. A string of doctors referred to me/called into consult just kept confirming what the last guy said, scratching their head, etc. They call it "group think." I asked them if it could be yeast instead of a bacteria. They all said "no way." So one doc after another kept taking blood cultures but only let them grow out 3 days (long enough for bacteria, but not for yeast). Finally, the lab kept a culture around long enough and they figured out it was candida glibrata, which is resistant to everything they had been treating me with. Another day of group think would have killed me. Literally.
I recommend researching on your own, and finding a physician who has done research in the disease state that is most likely applicable. For example, if you think you might have endometriosis, go on PubMed and see who's publishing a lot on endo in your area, and try to get in to see them.
If you want to email me privately, I'd be happy to give you more specific advice. I'm a medical writer/journalist, and I'm good with research and know a lot about different medical centers, clinicians, etc.
Good luck, and take care. Michelle in NC

Yeast is a huge issue
Submitted by asgardiner on May 24, 2007 - 4:56pm.
Thanks Michelle for sharing your experience. I have a huge soapbox on what's wrong with mainstream medical testing from blood tests to the illness-appropriateness of the typically ordered imaging tests. You touched on this in mentioning not giving cultures enough time to grow. Today's tests typically only pick up an existing abnormality maybe half the time, and by then, the affected organ is functioning at 10-40%. That's why specialists tell me they usually only see patients much sicker than me.
-Doctorblue

I agree
Submitted by Katie Ball on May 24, 2007 - 9:51am.
I suspected it was endo before anyone else did, but only after a lot of research and keeping a symptoms journal. Luckily my condition was something that wasn't life-threatening. It's a messed up world when you wake from a surgery hoping they found it and that you weren't slightly insane. Let's face it-- if someone in a perceived position of authority tells you the grass is purple long enough (and with enough conviction), wouldn't you start to wonder? There are great doctors out there but there are so many more that enjoy pushing the latest drug of fashion and don't recognize you as an individual. More than anything I think it's important to find a doctor who will LISTEN to you and who will think outside the norm. While I agree that referrals from one lame doctor to another isn't a good idea-- referrals from real people is a great idea. If your symptoms start to add up to one particular ailment (or are similar to a few), maybe check out forums set up for those conditions. Though it took surgery to prove the presence of endo, I received huge amounts of comfort and support from the Endometriosis Association. Through this group I met scores of women who were told the same things I was (and some with far worse experiences). Whatever your symptoms or condition, there are forums out there discussing it. It's said a lot but knowledge IS power-- You deserve to be heard and cured.
If I can help, please let me know.
-kb

Refreshing thoughts, thanks
Submitted by asgardiner on May 25, 2007 - 2:33am.
I love hearing people who expound what I too believe. I particularly like your statement about believing authority figures. The ubiquitous "Got milk?" promo doesn't hold a candle to the bang up marketing gig devised to convince the public doctors were all-knowing gods. Even vaseline has a warning to consult your doctor.
I have multiple maladies noted in various test results. But pointing out what's different as in the Highlight magazine Pete and Repeat feature does not a diagnosis make. What I need is a team of doctors to meet together and hash out the best approach.
I look at this like bowling. If you can guess the root cause of disease, it's like getting a strike--you hit the head pin and the rest fall down. But our medical system of specialists operate as islands onto themselves. They dare not trespass into another specialist's territory. That's not how the body works. Something wrong with the heart can affect the hands and feet due to lack of oxygen. The doctors I encountered are all like starting bowlers, plicking off a pin here and there and even throwing some gutter balls because they're looking at the body as a conglomeration of isolated parts with the assumption that the rest of the body is functioning optimally. They prescribe medication without even thinking about how it might affect something else going on in the patient's body.
Case in point. In fall 2003 a saliva test detected I had a Candida albicans imbalance in my normal flora. Research attributes Candida overgrowth in part to widespread use of antibiotics, steroids, birth control pills and overconsumption of sweets. This information simply did not register with the gynecologist I consulted about severe abdominal pain and endometriosis detected by ultrasonography. After telling her point blank that estrogen encourages yeast growth, she proceeded to prescribe a contraceptive estrogen patch to alleviate the pain. The next gynecologist my primary doctor referred simply said: "You're around 50. Just wait a few months, it'll all go away. You can wait that long can't you?" Years later, it hadn't gone away.
-doctorblue

Does radiology increase yeast growth?
Submitted by asgardiner on May 25, 2007 - 7:55pm.
Here's a weird thought out of the blue. Today Science Friday had a segment about a study that showed melanin-containing fungi use radiation as energy to grow much like plants use chlorophyll in photosynthesis. Host Ira Flatow asked one of the scientists on the project, Ekaterina Dadachova from the Albert Einstein College of Medicine, if there were any practical implications from the study for humans. She responded that the structure of the fungi melanin is similar to that found in human skin and hair.
One of my major challenges has been trying to rid my body of an extreme amount of inflammation and yeast -- an amount doctors told me they've "never seen before." Radiologists complain in their reports that the amount of inflammation obscures their ability to discern anything. One doctor told me that my yeast condition resembled that seen in ICU cancer patients.
Question: Are doctors' desire for x-ray vision causing my condition to worsen?
Food for thought. The research article "Ionizing Radiation Changes the Electronic Properties of Melanin and Enhances the Growth of Melanized Fungi" can be found at www.plosone.org.
-doctorblue

Wow, think of the possibilities
Submitted by Katie Ball on May 25, 2007 - 8:55pm.
That's like the good of antibiotics being cancelled out when they attack the good bacteria or prevent your body from learning to heal itself, but the prospect of your tests actually making your condition worse just sounds terrible. It's good that you're looking at things from every angle though.
Have you ever read "Our stolen future?" I couldn't get through the whole thing because it's enough to make you want to bury your head in the sand, but I didn't get rid of the thing either. It's about the effects of dioxins (from bleached paper, plastic, etc) and other everyday items of convenience. I got it years back at an endo meeting. One of the very worst things about auto immune disorders is that you do your best to get a handle on one set of symptoms and then something else like fibromyalgia, chronic fatigue or hypogylcemia comes along. Not cool at all.
Keep your head up and keep looking for answers. Best, kb

Think of the possibilities indeed!
Submitted by asgardiner on May 26, 2007 - 10:44am.
What came to mind are all the cancer patients being treated with radiation and being x-rayed after surgery to see if the cancer was removed. My mom died of cancer July 4, 1997. Seeing what the disease, surgeries and radiation treatments did to her was like watching a science fiction movie. She had sarcoidosis. I have her exact symptoms.
Sarcoidosis is characterized by the presence of granulomas. I had my tonsils removed a few years ago. The operative report cites the presence of granulomas. I have nearly every symptom listed for the disease in The Merck Manual.
Symptoms include low-grade fever, dry cough, shortness of breath, fatigue, brain fog, flu-like symptoms, aching joints, enlarged lymph nodes, multiple cysts, skin lesions and inflammation about the eyes.
I was seeing chiropractors for years for arthritis which turned out to be pseudogout (low uric acid blood level, calcium pyrophosphate crystals). At one point, the pain in my mid-back was so severe from amassed crystals passing through the kidney, I called my primary care physician pleading for pain relief. He said no. Thankfully, the pain stopped the next day once the crystals passed.
With little help forthcoming from the medical community in determining or treating what was wrong with me, I decided to do it myself. I began collecting my medical records and researching various diseases. I read the Merck Manual from front to back twice, flagging specific sections with so many multi-colored stickers, it appears shroud in confetti. I scoured the internet and bought all kinds of medical books, journals, manuals--you name it.
I was surprised to find information in my records never disclosed to me by my primary care physician, such as testing positive for Epstein - Barr virus and euthyroidism. Instead, my complaints of fatigue were met with prescriptions for anti-depressants. I stopped taking the drug at the recommendation of an endocrinologist who felt it was causing some of my health problems.
I began asking doctors to order specific tests and prescribe certain medication. You can imagine this did not go over well, so I had to come up with ways to convince them of the appropriateness of my requests. This involved producing relevant published case studies by doctor-respected physicians, getting compounding pharmacists to call and fax the doctor information, and having specialized labs provide instructions for collecting and sending blood samples.
From this I found that I had an H pylori bacterial infection, possible Aspergillus infection, anemia with no iron stores, a good possibility of Babesiosis, and the probability that I had the beginnings of cancer. I also obtained anti-fungal medications that would not have otherwise been prescribed.
There's a lot more to this story.
-Doctorblue

There is a cancer center in Carpenteria, CA
Submitted by Sallyfranz on May 30, 2007 - 3:42am.
Issels (sp?) Cancer center helped a friend rid his body of liver cancer in three weeks.
He had all the chemo he could stand and found this place. It's not woo-woo New Age. It is based on solid reseach from German institutes. Their goal is to change your food intake and teach your body to make anti-bodies to fight the cancer with a medical procedure.
Please contcat me via my bio if you want more info.
Sallyfranz
"Both faith and fear are the belief in things not seen." S. Franz

Pockets Empty
Submitted by asgardiner on May 31, 2007 - 3:00am.
I've been unable to work the last three years. I spent a good chunk of my retirement money on doctors and testing in the hopes I would get diagnosed and treated quickly. Fat chance. Now the money's gone, and all I have are all these test results. My last hope is just to piece this together and show doctors that by truly working together, they can easily come up with real diagnoses and actually cure patients. Thanks for the tip nonetheless.
-Doctorblue

How has the radio contest changed your life?

Positive Therapy
Submitted by asgardiner on May 23, 2007 - 10:20pm.
First, I can't believe I'm writing this. I guess I'm feeling pretty good about making a personal discovery by participating in this contest. As I listened to various audios and read various posted comments, I noticed that now and then I was getting angry or upset or feeling something I didn't want to be feeling. So one night I stayed up until 5am determined to come up with an uplifting belief to submit to "This I Believe." I struggled with the concept of not being able to write about my great accomplishment achieved after overcoming severe hardship--of not having moved from surviving to thriving with a story you'd hear about on Oprah. I'm still in the surviving, trying-to-get-there state. I finally came to realize that to me not having given up on a dream in the face of defeat after defeat is an accomplishment I can be proud of -- even if I haven't yet achieved the dream. I have to tell you, I'm now having a blast with this! The accumulation of talent, wit and insight here is remarkable! We should all get together at the end and have a big wing ding or something.
-doctorblue
That was extremely inspiring
Submitted by The Q on June 1, 2007 - 7:52pm.
That was extremely inspiring doctorblue.
I have had some real setbacks and disappointments the past six months-- it gets you down and you wonder if you even have a right to 'dream' when you're struggling with some of the basic stuff of life. I came to the same conclusion you did recently, and it may be that this contest was a catalyst for that.
The harder the knocks the more determined I am to dream big and to do what I believe is right. It may not always look practical, and it may not seem worthy to some, but I know what is worth my time and energy and what I want to accomplish with my life.
I hope the very best for you! ADQ

I agree with the wonderful Q
Submitted by ursabear on June 1, 2007 - 11:36pm.
Very inspiring thoughts... yes, you can, and should, be proud of you.
Jimmy

What Would You Do? What Others Said.

2008-11-25T01:18:00.003Z

(The next in a series of blogs on my quest for competent health care.)

What would you do to get treatment for a rare disease treatable with penicillin that seemingly no U.S. doctor is familiar with? What would you do to get treatment now that your funds have been depleted on living expenses, futile doctor visits, and you were too ill to work?

I really want your advice and comments because I'm running out of ideas.

After years of suffering ill health and going to doctor after doctor to no avail, I finally figured out that the root cause of my illness is actinomycosis. The bacterial infection is treatable with an initial three week IV infusion of penicillin followed by long term oral administration of penicillin tablets and ancillary surgery, if needed.

Additional measures may be necessary to address Candida, Staph and other infections that often accompany the disease. With treatment, there is up to a 90% cure rate.

Without treatment, the patient experiences degeneration of the spine along with dysfunction of the organs corresponding with the affected areas of the central nervous system. The illness is debilitating and painful.

Of the many individuals, organizations and government officials that I've approached for help, I mostly got dead end referrals.

Two of my neighbors who had undergone surgery with Dr. Esam Omeish were adamant that I make an appointment to see him. Dr. Omeish, who is currently running for state delegate in Virginia, served on the board of a number of non-profit organizations.

Because he had chaired the board of a community medical clinic and provided free service to the uninsured and the needy, they thought he would be sympathetic to my plight and at least listen to my concerns. In fact, the first issue listed on his campaign website is accessible, quality healthcare.

However, when I contacted his private practice, Paula, an office assistant, told me that Dr. Omeish refused to see me because I had already been seen and had a colonoscopy and an SBFT performed by other doctors at INOVA Alexandria Hospital, where he worked as Chief of General Surgery.

There is a code of silence among medical practitioners. No doctor can speak contrarily about the work of another doctor, even if he knows mistakes were made. Medical politics requires this silence to ward off the potential of the patient's filing a medical malpractice suit.

It's said that testifying against a colleague would amount to career suicide. The medical profession runs much like an elitist club with strict rules devoid of moral considerations. The club code requires doctors to honor each others' opinions to uphold their reputations.

Consider the cost to the healthcare system from all of this back scratching and patient neglect.

Having read such books as Wall of Silence and The Medical Malpractice Myth, I knew about this sacred comradery among doctors and tried to explain it to my neighbors. They couldn't believe that Dr. Omeish would not see me and insisted that this response was coming from his assistants, not him.

So they decided that one of them would take me along on an appointment. They assumed that once Dr. Omeish met me face to face, surely he would set up an appointment.

Not long thereafter I found myself sitting quietly in the waiting room while my neighbor went in for his appointment. After the appointment, Dr. Omeish walked my neighbor to the door separating the exam rooms from the waiting room, where he saw me sitting. He turned and walked back toward the exam rooms without even saying hello.

My neighbor called me to the reception desk where he was checking out and told me that Dr. Omeish wanted to see my medical records before deciding if he would agree to a consult. The office assistant confirmed I was to go home and return that afternoon with copies of my records for his review. I complied.

By the time I returned, however, Dr. Omeish had already left for the day. He was not expected back in the Falls Church office for another week. My medical record was eventually taken to Omeish's Alexandria office, where I picked it up a few weeks later.

The rubber band that I had placed around the paperwork was in the exact same place as it was when I dropped the records off. He hadn't even looked at them. His answer via the receptionist was the same. He wouldn't see me because I had been seen by a gastroenterologist, Dr. Ronald Barkin, affiliated with the same hospital where he worked.

Dr. Omeish could have easily gone into the records at the hospital and checked my abdominal x-rays to see for himself whether I needed surgery as I contended. He didn't.

Others offering advise suggested I contact support groups for insight into assistance finding help. There is no support group for patients with actinomycosis. I ended up starting a forum on the disease on www.MDJunction.com. There are two participants besides me to date.

Some recommended that I contact various government agencies and apply for social services like Medicaid since I'm too young to qualify for Medicare.

I found states have the option of participating in the federal Medicaid program, and Virginia only provides Medicaid to women during their pregnancy and to children. My application for Social Security Disability was approved in November 2008. However, even with the Disability award, I would have to wait until August 2009 before Medicare coverage kicked in.

At one point, my journey led me to Dr. James Bona in FDA's Office of Orphan Products Development. He works with pharmaceutical companies in designing drugs to treat rare diseases. Dr. Bona referred me to Dr. Steve Groft at The National Institutes of Health.

Dr. Groft is Director of NIH's Undiagnosed Diseases Program. Here, NIH doctors work in conjunction with the treating patient's doctor to diagnose and recommend treatments for patients accepted into the program. Dr. Bona thought I would be an excellent candidate given that my diagnosis had eluded so many physicians over the years.

I spoke directly with Dr. Groft on a few occasions, and he agreed. The one catch was that I did not have a treating physician, which is prerequisite for program participation.

In his last e-mail to me on December 10, 2008, Dr. Bona wrote: "Spoke with Dr. Groft who said he is continuing to try and identify a physician at NIH to assist you. It is especially difficult since one of their main criterian for acceptance to their program is for you to have a treating physician of your own who can converse with the physicians at NIH, who can initially refer you, and most importantly, who can continue treatment outside the NIH when and if the NIH folks can discover the best course of therapy. The therapy would not be at the NIH. They're primary goal would be to help diagnose what's going on. Treatment would fall onto your private physician."

I was somewhat surprised that the few doctors I asked to participate in this program on my behalf refused. I got the distinct impression that they felt that they didn't need another doctor to help them diagnose or treat me, or that to do so would be an affront on their reputation. Even clinical trials require a doctor's referral.

Dr. Bona encouraged me to contact non-profit organizations, such as the National Organization of Rare Diseases (NORD), Inod.org, and undiagnosed-usa.org. I found these and other health-oriented non-profit organizations don't actually help patients; they just write about helping patients.

NORD serves as a clearinghouse of information on various rare diseases. It didn't even have actinomycosis listed.

NORD suggested searching PubMed articles on actinomycosis and then contacting the physician authors. Physician authors of articles on actinomycosis that I contacted were either retired or, as research physicians, didn't see patients.

Undiagnosed-usa only deals with children who have rare or undiagnosed diseases. The Inod executive director had no clue as to whom I should contact to find medical help.

Some suggested I obtain legal representation to obtain medical care. The dozen malpractice attorneys I contacted who advertise taking cases on a contingency basis, I found, don't actually represent clients on contingency if the case appears to them as complicated and time consuming.

I was referred to Washingtonian magazine's list of top area infectious diseases doctors. (Several doctors described the list as primarily a popularity contest -- I'll-vote-for-you-if-you-vote-for-me type deal.) Of the dozen physicians listed with infectious diseases specialties, only a handful did not list specific sub-specialties. I'd already been to the office of two of those listed, Dr. Donald Poretz and Dr. Allan Morrison to no avail. (Blog #4 provides a detailed account of my experiences.)

One time I heard Jonathan Weiner, Johns Hopkins University professor of health policy and management on The Diane Rehm Show, so I contacted him for assistance. (When Diane Rehm had difficulty locating a physician knowledgeable about spasmodic dysphonia, she went to Johns Hopkins without a referral and was diagnosed within one hour by a JHU physician who treated her at the same visit.)

Professor Weiner suggested that I make an appointment with JHU's Infectious Diseases Division physicians. He even had the administrative assistant call me to set up the consult. But when I didn't have a doctor referral stating the diagnosis already, she refused to make the appointment stating that it was JHU policy that all patients must have a doctor's referral to be seen and the referral must state the diagnosis so that JHU physicians will know upfront if they will be able to help the patient.

When I repeated this unbelievable response to Professor Weiner, he said he could not believe that a JHU physician would not see me for an initial consult because I did not have a doctor's referral. Keep in mind, everyone acknowledged I did not have health insurance coverage, so the need for a referral had nothing to do with requirements for insurance reimbursement.

Professor Weiner suggested that I file a complaint with JHU Patient Relations. I did.

To cut to the chase, on January 13, 2009, I received a letter from Dr. Paul G. Auwaerter, Clinical Director, Division of Infectious Diseases, Johns Hopkins University, in response to Patient Complaint #12610. It stated:
"Dear Ms. Gardiner: I have been notified through the JHMS Patient Relations of your complaint regarding some telephone calls in order to set up an appointment in our Division of Infectious Diseases. As you were appropriately told, we ask that patients be referred by their physician with a specific question(s). Since we have limited faculty and limited appointment times, this is how we can best determine how to help the patients most in need."

I want to add that when I was trying to set up the appointment, I faxed over a pathology report positive for actinomycotic granules as well as other lab and radiograph reports demonstrating the features seen in patients with actinomycosis. JHU said the tests weren't current enough and would have to be redone.

I've been referred to various religious organizations so that I can better let go and accept what I cannot change. (I stopped socializing when it became apparent to me that I was a walking petri dish, extremely susceptible to catching and possibly transmitting illness to others.) I tried letting go -- putting myself totally in the hands of God -- but the saying, "God helps those who help themselves" kept resonating in my mind. I kept thinking that if I was lost in a forest, it's unlikely that I'd just sit down and wait to be rescued.

I keep believing that there is one person in this world who would help me if I found a way to get my message through to that person. I just haven't yet found the way.

Following are a sampling of e-mail responses from some people that I contacted:

August 19, 2008 E-mail from Jerome Groopman, M.D., author of How Doctors Think in response to my request for assistance finding someone to treat my Actinomycosis.

Dear Ms. Gardiner:

This is not my field. I suggest you continue to seek out experts with knowledge with this infection at NIH, Johns Hopkins, etc. Wishes for better health.

Dr. G

March 13, 2008 Email from Microsoft's Dr. Bill Crounse on behalf of Bill Gates in response to my request for assistance getting my CT scans online for diagnostic grade viewing by radiologists and surgeon physicians who can read radiographs. He never specifically addressed my request. Radiograph CDs typically are in DICOM form, which my computer, run on XP, can't upload. I offered to give all of my many CT scans, MRIs, x-rays, etc. to Bill Gates and void my rights to privacy if he would help me get them online so that I might find a medical professional who would help me.

Dear Ms. Gardiner:

Thank you for your recent fax sent to Bill Gates at Microsoft. Mr. Gates asked me to personally respond to you. My name is Dr. Bill Crounse. I am a physician who serves as Microsoft’s worldwide health director.

Prior to joining Microsoft, I practiced medicine in the Seattle area for almost 20 years. I am all too familiar with the deficiencies of our broken healthcare system. Most doctors really do try to do the best for their patients, but the system works against them. They also lack the tools they need to manage an increasingly complex array of clinical data. That’s why I decided to spend the rest of my professional career here at Microsoft helping our company and partners develop contemporary IT solutions for the health industry.

Microsoft works more than 600 partners who use our technologies to bring innovative solutions to life. From contemporary medical record solutions, to systems that run America’s hospitals, to patient care portals, to mobile devices for medical professionals, to home monitoring technologies that help people age in place; Microsoft, through our partners, is deeply involved in the healthcare industry.

We also have a Health Solutions Group that is developing or acquiring applications specifically for the healthcare industry. In addition, we are developing solutions such as our HealthVault platform (www.healthvault.com) that directly serve the consumer market. In fact, with a HealthVault account someone like you can upload clinical information and medical images, securely store that information, and share it with whoever needs to see it. Furthermore, a HealthVault account is free.

You can learn more about Microsoft in the healthcare industry by visiting www.microsoft.com/healthcare. I have also authored a number of relevant articles on Microsoft solutions in healthcare at http://www.microsoft.com/industry/healthcare/housecalls.mspx . You will find additional information and discussions about our work in healthcare information technology by visiting my HealthBlog at http://blogs.msdn.com/healthblog

Thank you again for writing. On behalf of Bill Gates and all of us at Microsoft, we wish you the very best.

Bill Crounse, MD
Senior Director, Worldwide Health
Microsoft Corporation
One Microsoft Way
Redmond, Washington 98052-6399
Phone (425) 706-4182
Cell (425) 443-5815
E-mail bcrounse@microsoft.com
Healthcare Industry Blog http://blogs.msdn.com/healthblog/

E-mail from Dr. William Brody, outgoing president of Johns Hopkins Medical Center, in response to my comments on his appearance with the Honorable Michael Bloomberg on Maryland Public Television and to my request for assistance getting treatment. The two dared to publicly broach the premise that a system that legally separates a human patient into parts for diagnosis and treatment just doesn't work.

From: Brody, William [mailto:wrbrody@jhu.edu]
Sent: Saturday, May 03, 2008 12:58 PM
To: anna.gardiner@verizon.net
Cc: mikebloomberg@mikebloomberg.com
Subject: RE: Healthcare 08 Solutions

Dear Ms. Gardiner,

Thank you for your comprehensive e-mail. You certainly have identified many of the problems of the healthcare system.

I don't have the time to reply to the many important issues you raise, but suffice it to say that our healthcare system is a patchwork quilt of regulations, incentives (money) and behavior that sometimes results in poor or inappropriate care and high costs.

Thank you for taking the time to write.

Sincerely,

William Brody

September 8, 2008 E-mail from Patient Advocate Foundation in response to my request for help finding treatment for Actinomycosis.

Thank you for contacting Patient Advocate Foundation. Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

If you would like to speak with someone you may call our toll-free number at 1-800-532-5274 to speak with one of our staff. The case manager will need to collect personal information, such as date of diagnosis, insurance information, date of birth, SSN, etc., so please be sure that whoever calls in is prepared to provide that information. We have access to a wide variety of resources and can offer intervention if necessary. We are unable to provide medical advice or assistance with malpractice or coordination of care issues, accidents or injuries, mental health, dental or workers' compensation claims. Take care

Sincerely,
Patient Services

August 28, 2008 E-mail response from Senator Hillary Rodham Clinton's office in response to my request for help finding a U.S. doctor who knows anything about Actinomycosis.

Dear Friend:

Thank you for taking the time to share your thoughts and concerns with me via e-mail. I hope you will understand that, because of the volume of e-mails I receive from residents of New York State, I cannot at this time respond to messages received from residents of other states. I encourage you to contact your U.S. senators if you have an issue or concern that needs immediate attention. You can access your senators electronically by visiting http://www.senate.gov/contacting/index_by_state.cfm for a listing of their contact information. If you are still interested in learning more about the work I am doing on behalf of New York State, I hope you will continue to monitor my work through my website at http://clinton.senate.gov.

Sincerely,

Senator Hillary Rodham Clinton
New York State

September 12, 2008 E-mail from Professor Michelle Mello in response to my request for a mediation as an alternative approach to medical injury litigation, which could be funded as a pilot project by the Robert Woods Johnson Foundation as part of its national initiative to test the feasibility of voluntary reform efforts outlined in a 2008 Common Good report.

Dear Ms. Gardiner,

Thank you for your message. I am very sorry to hear of the difficulties you have had. Unfortunately, it would not be feasible to have a health courts pilot to hear your case. A pilot would have to involve a programmatic commitment on the part of a hospital liability insurer and/or a state legislature; it's not something that could be initiated for one particular case. I hope you are able to find another avenue of relief.

Kind regards,
Michelle Mello

*********************************************************************
MICHELLE M. MELLO, J.D., PH.D.
Professor of Law and Public Health
Department of Health Policy and Management
Harvard School of Public Health
677 Huntington Ave.
Boston, MA 02115
(617) 432-0217 voice
(617) 432-4494 fax
mmello@hsph.harvard.edu
http://www.hsph.harvard.edu/faculty/MichelleMello.html

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September 16, 2008 E-mail from Professor David Studdert in response to my request for assistance exploring an alternative method for resolving a medical malpractice claim. Studdert was involved with the Robert Woods Johnson Foundation's initiative on "Improving Malpractice Prevention and Compensation Systems" set up to test alternatives to the tort system.

Anna – I’m very sorry to hear about your situation. Unfortunately, there are no current pilot programs for the Health Court up and running. We hope that our research might lead to one or two in years to come. Sincerely, David Studdert

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David M. Studdert
Professor & Federation Fellow
Faculty of Law & Faculty of Medicine, Dentistry and Health Sciences
University of Melbourne
tel: 61 3 8344 0646
fax: 61 3 9348 1174
mobile: 0407 083 444
email: d.studdert@unimelb.edu.au

November 17, 2008 E-mail from Jim Bona in FDA's Office of Rare Diseases in response to my request for help finding a U.S. physician who knows about Actinomycosis.

Ms. Gardiner:
Spoke with one of my co-workers here at FDA who suggested you speak with any of the infectious disease physicians named in the Washingtonian Magazine's Top Doctors for 2008 or 2009 as a place to start to find a highly knowledgeable person. I attached the list from 2005.
http://www.washingtonian.com/articles/health/1919.html
My co-worker did say any of these specialists should be able to diagnose the causative organism as being Actinomyces and to offer suitable therapy. I did see that it is a very rare condition but a good infectious disease doc probably should be able to make the diagnosis. This is just another option for you.
I hope speaking with the NIH program folks is of help.
Please let me know if either of these are of benefit.
Thanks,
Jim

The Story #15: Time Out

2008-11-16T00:34:00.003Z

You'll have to forgive me for not blogging every day. I'm still very, very ill and am doing everything I'm physically and mentally capable of to maintain myself, my living environment and deal with creditors, foreclosure, etc.

Yesterday, I retained a bankruptcy attorney, who advised me to list my home for sale, probably a short sale. I'm three months delinquent on both my first and second mortgages, which are likely equal to or greater than the value of my home. Unless lenders agree to negotiate the principal and their fees, I'll be what is called "upside down" -- sort of a fitting appellation, don't you think? Plus, like lots of people today, I've no money and nowhere to move.

I've avoided writing about how debilitating this bacterial infection is for me -- being in slow motion virtually crawling through each day -- because I know I am better off than lots of other people. I know that many people would accuse me of just throwing a pity party. Plus, it depresses me so much to think of how pitiful my situation is, I don't even want to be with myself, so why would you?

Self-indulgent tales of woe seem to elicit responses like the kind I get when I tell people that I believe Tim Russert would still be alive had his doctor performed other tests to detect plaque buildup in his coronary arteries rather than having just relied on the results of a stress test to determine his cardiovascular health. (Russert, a prominent TV journalist probably best known for moderating Meet The Press, died at age 58 from a heart attack resulting from a ruptured cholesterol plaque.)

The responses I get upon sharing my thought go something like, "Well I heard he was drinking on the plane back from his vacation, and he ate a lot of fatty and fried foods..." as if he deserved to die for his indulgences. The inference correlation is that I deserve to suffer because I chose to work hard, married the wrong person, etc., etc. The inference correlation is also that it's okay for doctors to be derelict in their duties.

Now, I know that's not what people mean when they say such things. Such statements are reactionary. The truth is we're all uncomfortable with things we can't control. We feel bad that there's nothing we can do to stop such injustice. Hence, if there's nothing we can do, then why dwell on the subject just to end up depressed ourselves?

We want to believe in the fairy tales we heard when we were growing up. That's why movies like Pretty Woman and TV shows like House are so successful even though their portrayals are far from reality and their endings are happy. They give us hope. And there's nothing wrong with that. I want to believe in these stories, too.

Why do we think, for the most part, there is someone else, somewhere who will be or is responsible for helping that person asking for your help? Is it because we know no good deed goes unpunished or because referral is the path of least resistance? Where does the buck stop?

If you've been listening to the post election commentaries about the meaning of President-Elect Obama's hope message, you might have heard talk that reflected the late John F. Kennedy's statement: "Ask not what your country can do for you. Ask what you can do for your country."

It's a wonderful mindset that, for me, brings up Capraesque visions of life or those of Frank Seaton. Seaton's heroes were individuals who mustered the cumulative efforts of groups of people. In Miracle on 34th Street, for instance, the U.S. Postal workers as well as Macy's and Gimbel's owners among others all played a role in helping Kris Kringle, and by doing so, they elevated and helped themselves.

Such organization requires community leaders with the skills to incite and motivate others. Are you among them?

Now that the state of the economy has freed up your shopping time, maybe that time and effort could be spent helping those like me, whose ultimate goal goes beyond self-interest toward rectifying social injustice affecting all of us?

Let's face it. We can't help everyone who needs help. The thought of even attempting such feat is enough to make even me want to bury my head in the sand. But you can choose to help one person by tapping and gathering others. One step for man, one giant leap for mankind type thing.

So here's what I need you to do:

• sell/dispose of my belongings which I cannot take with me when I move;
• find me a new home;
• negotiate with my creditors to resolve debt obligations;
• set up a non-profit organization that lobbies Congress for the rights of mistreated patients and for improvements to the Social Security system;
• set up a website for said nonprofit that enables the medically mistreated to post online their radiographs and radiologist's reports next to their doctor's assumptions to show whether the two are congruous;
• help me locate anywhere a medical professional familiar with Actinomycosis who is willing to treat me.

There's more, but I didn't want to press my luck. God bless and keep the faith. This is America, after all.

The Story #14: Significance

2008-11-16T00:33:00.006Z

My last blog submission revealed how I arrived at my self-diagnosis of a debilitating, systemic bacterial infection, actinomycosis.

So what does this mean? Go get treated now and happy ending? Not quite. I still have to find a physician who knows anything about actinomycosis and who is willing to treat me.

“How hard can that be?” you ask.
Well, I’ve been searching for years now with no luck, I say.
“But you didn’t know what you had then and now you do,” you say.
I respond, why would a doctor believe a short person with no medical degree? And why should anyone even care about my difficulties finding a knowledgeable, treating physician?

For several reasons, not least among them are implications concerning U.S. defense readiness against biological warfare agents — whether brought on by external forces, internal callousness or carelessness.

As a commercial real estate broker in Northern Virginia, I did a fair amount of business with defense contractors. One day, I overheard talk of contractors vying for a government contract that involved determining the health care community readiness to recognize and defend against a biological warfare agent. Would family doctors recognize the signs and symptoms early enough to forestall disaster, they asked. How would they go about fairly measuring such readiness without tipping their hand or revealing the nature of the study? I never heard anything more. However, considering that, after years of trying, I still haven’t found one doctor who knows anything about my disease, it seems the bacterium Actinomyces israelii would be a pathogen of choice.

It’s difficult to detect. The pathogen invades and proliferates subclinically for a long time before symptoms are noticeable, yet the destructive effects to bone and the central nervous system are severe and painful. So if the intent is to inflict prolonged, debilitating pain and disease slowly among a people, this is surely a possible pathogen of choice. Symptoms are similar to those suffering from rheumatoid arthritis, chronic fatigue and multiple sclerosis or brought on by Lyme disease, which is rumored to have been considered for use as an incapacitating biological weapon.

From what I gather, germ warfare is viewed as a strategic weapon. Its effects develop over time, and some strategies are targeted at wreaking economic distress rather than at incapacitating humans. Such examples include introducing pathogens to destroy crops or wipe out cattle.

There are many examples of biological warfare tactics implemented throughout history. However, since signing the Biological and Toxic Weapons Convention in 1972, the U.S. is said to have limited activity in this area to defensive research, such as devising ways to combat foot and mouth disease in cattle. This is among the primary research initiatives taking place at the Plum Island Animal Disease Center, located off the northeast coast of Long Island in New York State.

The Center is a United States federal research facility dedicated to the study of foreign animal diseases. It’s said that during the Spanish-American War, the island was purchased by the government for the construction of Fort Terry, which was deactivated after World War II and then reactivated in 1952 for the Army Chemical Corps. In 1954, the Army gave the island to the Agriculture Department to establish a research center. In 2002, the island Center was transferred from the United States Department of Agriculture to the United States Department of Homeland Security. There are 70 buildings on the island’s 840 acres. The Center carries up to a Biosafety Level 3 designation.

Lab 257, a book by Michael C. Carroll, PhD, alleges a connection between the Plum Island Animal Disease Center and the outbreaks of three infectious diseases: West Nile Virus in 1999; Lyme disease in 1975, and Dutch duck plague in 1967.

Lyme disease was first discovered in the U.S. in 1975 after a mysterious outbreak of arthritis surfaced in children who lived near the town of Lyme, Connecticut. The town is roughly 15 miles away from Plum Island as the crow flies.

Some conspiracy theorists on the internet speculate that Lyme disease spread to nearby Connecticut as a result of the lab’s biological experiments with disease-infected ticks. Some say that the Plum Island Animal Disease Center workers who took an employer-provided ferry to their jobs from Orient Point, New York and Old Saybrook, Connecticut could also have been unknowing carriers of the disease.

If these or other outbreaks said to have occurred at the Center actually took place, I’ve found no reports contending intentional malice. Apparently, if true, it would simply have been a case in which mistakes were made.

On January 16, 2009, the Department of Homeland Security finalized plans to shut down the facility by 2015 and move it to a new $450 million research site in Manhattan, Kansas. The new facility will be upgraded to handle even more deleterious pathogens up to Biosafety Level 4.

Diseases considered for weaponization or known to be weaponized are regulated by the Centers for Disease Control and Prevention (CDC). The CDC has categorized bioterrorism agents according to priority. The biological agents with both a high potential for adverse public health impact and serious potential for large-scale dissemination are Category A agents. These include anthrax, smallpox, plague, botulism, tularemia, and viral hemorrhagic fevers. The Category B agents are moderately easy to disseminate and have low mortality rates. These include brucellosis, episilon toxin, food safety threats (e.g.: salmonella, E coli, staph), glanders, meliodosis, psittacosis, Q fever, ricin toxin, staphylococcal enterotoxin B, typhus, viral encephalitis and water supply threats. Category C agents are pathogens that might be engineered for mass dissemination, such as multi-drug resistant tuberculosis, nipah virus and hanta virus.

While the CDC has established a comprehensive and elaborate response protocol, it should be noted that health care providers are among the first line of defense in detecting these biological weapons organisms. Frankly, based upon my first-hand experience with doctors, that scares me.

Currently, the Environmental Protection Agency doesn’t even require industries to test for various known pollutant by-products that could well be causing long term detrimental health effects. We know our rivers and other waterways are contaminated with unacceptable levels of pollutants. And when we become seriously ill, we expect our physicians to be able to determine the pathogen that caused the illness, and then know what to do to cure the patient.

Actinomycosis, prevalent before the invention of penicillin, is now said to occur once in every 300,000 patients in the U.S. It is largely thought to have been eradicated in developed nations. The disease wasn’t even listed in the National Organization of Rare Diseases’ list of rare diseases. (The organization’s qualifying criteria for listing a disease is an occurrence of 1 in 200,000.) There is no support group, nonprofit or other organization for those afflicted with actinomycosis. Most of the literature on the disease comes from abroad. Frankly, I believe the disease is far more prevalent in the U.S. It’s just not diagnosed.

Currently, I’m googling authors of articles on actinomycosis, then locating, calling and e-mailing those physicians to see if any will help me. Unfortunately, I’m finding those who do research and write articles largely don’t see patients. So I’m hoping some knowledgeable physician will make me a research project. Maybe that way, I can get treated.

The Story #13: The Diagnosis

2008-11-15T23:51:00.009Z

With the exception of occasional visits to a chiropractor, I stopped seeing doctors in October 2005 when I could no longer afford medical insurance. Seeing doctors seemed useless anyway since they couldn’t figure out what was wrong with me, and the few medicines they prescribed weren’t helping me get well. I figured that if I was ever going to get well or sue for malpractice, I needed to know what was wrong with me. The answer had to be in the binders full of test results I had amassed.

It’s one thing to keep focused on a project when you’re healthy. It’s quite another to try to sift through all this medical data and make sense of it when you can’t even hold a train of thought due to illness. The only way I could get a handle on what I was trying to accomplish was to start from the beginning and write down what I’d found out chronologically. That way, if I lost my concentration, I could go back and read where I left off. If I had a thought, I’d write it down in a notebook before I forgot and go back to deal with it at the appropriate time. Thank God I took good notes after my doctor visits and procedures.

I researched the significance of each positive test finding by scouring the internet and medical books I had acquired. This was no easy task because you really have to dig past all the superficial information out there to find what’s useful. Then dealing with the medical terminology I encountered was intimidating as well – like having to learn a foreign language.

I found that if you ask five people the same question, you end up with five different answers. They could all be right — just approaching the subject from a different perspective. Some could have old information that’s changed. Science knowledge changes exponentially. Some could just be misguided. You use your best judgment.

The breakthrough came when I stumbled across a Korean radiologist’s study on abdominopelvic actinomycosis involving the gastrointestinal tract and cross referenced his CT scan findings with the findings on my CT scan reports. The wording matched precisely. Then I started examining other correlations of findings in patients with actinomycosis in this and other studies with my test result reports.

I found that anaerobic bacterial infections, such as actinomycosis, are notoriously hard to diagnose. Acute or chronic signs of infection may be absent. The patient’s temperature may be within the normal reference range. White blood cell counts can be in the standard reference range or mildly elevated. There is usually mild, predominantly polymorphonuclear leukocytosis (white blood cells that appear to have multiple nuclei) and a normochromic anemia (red blood cell hemoglobin is within the standard reference range.) The erythrocyte sedimentation rate and C-reactive protein may be moderately raised as with any chronic illness, but these do not confer any diagnostic advantage. Plain chest radiograph findings in actinomycosis are nonspecific.

Because the clinical presentation is nonspecific, definitive diagnosis is generally based on a pathologist’s identification of actinomycotic granules, the characteristic “sulfur granules” (small yellow colored material in the pus) from a biopsy or tissue specimen. The surgical pathology report from my tonsillectomy in 2001 found actinomycotic granules in tonsilar crypts accompanied by an abundant accumulation of inflammatory cells.

Because actinomycetes are normal micro-organisms found in the mouth, especially in periodontal pockets, in dental plaque and calculus, and in the tonsilar crypts, the presence of actinomycotic granules by itself may not indicate infection. It’s said that up to 40% of surgically removed enlarged tonsils will show one or more colonies of Actinomyces, sometimes large enough to appear as yellowish grains of rice. The offending pathogens assume a parasitic role when they result in infection with an inflammatory tissue response.

While the prevailing belief has been that long term administration of penicillin or alternate antibiotic will wipe out actinomycosis, researchers have since found that the infection’s inflammatory response occurs due to the synergistic presence of associated bacteria, often co-existing gram-positive or gram-negative cocci and rods. In essence, actinomycotic infections are polymicrobial with other pathogens (typically staphylococci, streptococci, enterobacteriae and Candida) frequently cultured from lesions. It’s postulated that these microorganisms enhance the pathogenicity or virulence of Actinomyces by creating an anaerobic environment in which Actinomyces thrive.

Due to the polymicrobial nature of the disease, researchers in recent years concluded that a broader spectrum of antimicrobial therapy (including hyperbaric oxygen) was needed in addition to that specifically targeted to the Actinomyces for effective treatment. Yet the Merck Manual and many other mainstream sources of medical information still list treatment for actinomycosis as long term intravenous penicillin and oral antibiotic therapy with possible adjunct surgery. The course of recommended intravenous treatment is two to four weeks of penicillin, followed by six to 12 or more months of oral antibiotics. Older versions of these medical references, which many practicing doctors still consult, typically contain only anecdotal reports suggesting hyperbaric oxygen (oxygen under high pressure) therapy in combination with the recommended antibiotic therapy as beneficial. Yet even Medicare now covers hyperbaric oxygen therapy for patients diagnosed with actinomycosis.

Likewise, Merck describes the symptoms of actinomycosis as a local abscess with multiple draining sinuses, a TB-like pneumonitis (lung inflammation) and low-grade septicemia (disease-causing organisms spreading infection usually by circulating in the blood). However, this description, like the typically recommended treatment solely with penicillin or similar antibiotic, is too simplistic and inaccurate.

Actinomycosis is a chronic, slowly progressive, pus-forming disease in which the organisms invade tissues and produce a granular discharge. Actinomycosis begins as an inflammatory soft tissue mass, which may enlarge into abscesslike swellings. The surrounding tissue swells up and may or may not leak pus through narrow passages (sinuses) onto the surface of the skin.

The infection forms small, flat, hard lumps of tissue which tighten the muscles around it. Unlike other bacterial infections, actinomycosis moves easily from one layer of tissue to the next. It can move to other parts of the body without travelling through the lymphatic system.

Traumatic disruption of the mucosa enables the Actinomyces to penetrate into deeper tissues following surgical procedures, such as tonsillectomy, oral surgery, root canal therapy or infection. Ischemia (tissue damage due to lack of oxygen caused by constriction of blood vessels) usually accompanies the trauma.

The infection takes several forms. In the cervicofacial form, the most common port of entry is decayed teeth. Actinomycosis of the teeth usually presents with painful swellings in the mouth. Periapical actinomycosis is reported usually in association with trauma to a tooth or dental procedure. However, the infection can spread to the cheek, tongue, throat, the tubes that connect the throat to the nose, the larynx, the trachea, salivary glands, the ears, the scalp, facial bones, the brain or the tissues surrounding the brain. If the infection spreads to the meninges (the membranes that cover the brain and spinal cord), meningitis can develop. The main symptom of cervicofacial actinomycosis is the presence of hard lumps in the soft tissue in the head and neck region or below the jaw (thus the acronym “lumpy jaw.”)

Pulmonary infections usually arise after aspiration of oropharyngeal or gastrointestinal secretions. This form causes chest pain, possible fever and a cough that brings up sputum.

Gastrointestinal infections frequently follow loss of mucosal integrity from ulcerations, surgery or rupture of a diverticulum or appendix. One or more abdominal masses that cause signs of partial intestinal obstruction occur most often in the ileocecal region. Usually the cecum, the appendix and peritoneum are infected. Pain, fever, vomiting, diarrhea or constipation are characteristic of infection affecting the intestines and lining of the abdominal cavity.

The use of intrauterine devices or IUDs is linked to the development of actinomycosis infection in the female genital tract. Other predisposing factors include steroid use, immunosuppression and HIV infection.

In the generalized form, infection spreads to the skin, vertebrae, brain, liver, kidneys, ureters and pelvic organs. Diverse symptoms such as back pain, headache and abdominal pain may occur.

Slowly developing abscesses branch out with a fibrotic scarlike texture that is easily mistaken for carcinoma or tuberculosis. Fistula formation (abnormal channels connecting two internal organs or leading to the outside) leads to invasion of viscera, joints, bone and/or the central nervous system. Progression of the disease leads to multifocal involvement — a diagnostic challenge that could easily result in a failed diagnosis. The offending pathogen, originally classified as a fungus, is now classified as a branching bacteria.

Signs of the disease can be found on cross-sectional imaging. CT of the pelvis depicts diffuse bowel wall thickening, enhancement of the pelvic fat, obliteration of tissue planes and intensely enhancing pseudotumoral phlemonous foci with or without abscess formation. Ascites and lymphadenopathy are not typical features of this disease. MRI with its multiplanar capability illustrates the infiltrative behavior of the disease.

A CT scan of my pelvis and abdomen taken on March 11, 2005 found a stool-filled colon with decompression of the descending colon, questionable bowel wall thickening and enhancement of the sigmoid colon. Lack of fat planes within the pelvis made evaluation difficult. There was no ascites nor retroperitoneal or pelvic lymphadenopathy seen. The cecum was redundant and extended into the deep right pelvis. Dr. Elise Berman, the radiologist, recommended further evaluation through colonoscopy to exclude an underlying obstructing left colonic mass, which she and the prescribing gastroenterologist, Dr. Carol Schuffler, suspected might be colon cancer.

On May 12, 2005 Gastroenterologist Dr. Ronald Barkin performed a colonoscopy at Inova Alexandria Hospital. The operative report noted notable diffuse inflammatory change with ulceration in the descending colon, the sigmoid colon and rectum. The pathology report confirmed the presence of prominent infiltrate of lymphocytes, neutrophils and eosinophils within the lamina propria and surface erosion.

A three-view radiograph of my lumbar spine obtained from Virginia Hospital Center October 2008 as part of my application for Social Security Disability Insurance showed “severe osteoarthritic changes” and degenerative disc disease.

Concisely, my self-diagnosis is based upon:

1. A pathology report indicating the presence of actinomycotic granules in inflamed tonsilar crypts from a biopsy taken during my tonsillectomy in 2001.
2. A CT scan of my abdomen taken March 2005 showing questionable bowel wall thickening, enhancement of the sigmoid colon, decompression of the descending colon as well as a redundant cecum that was extending into the deep right pelvis.
3. A colonoscopy performed May 2005 which found abnormal mucosa located mid-sigmoid with diffuse inflammatory change with ulceration in the descending colon, the sigmoid colon and the rectum.
4. The presence of hard lumps in the soft tissue of my head and neck, particularly in the submandibular region.
5. Missing left and right lower molars, extracted due to infections coming from the root of the tooth in the last few years. Multiple oral and periapical surgeries and root canals.
6. Pap smears positive for bacterial infection. (I had a copper 7 IUD removed due to perforation and infection in 1979 in the emergency room of what was then Prince George’s General Hospital now run by Dominion Healthcare.)
7. Various x-rays of my spine taken from the 1990s through October 2008 demonstrating severe osteoarthritic changes and degenerative disc disease — the bone destruction repercussions from not treating the infection.
8. Lab test results positive for Candida, e-coli, coccobacilli and staph infection.

The cure rate for certain forms of the disease with early intervention and appropriate antibiotic therapy is over 90%. More than 50% of those with actinomycosis of the brain and spinal cord have persisting neurologic damage, and more than 25% die. Untreated, the disease causes various complications including degeneration of the spine and osteomyelitis.

The Story #12: The SBFT

2008-11-06T03:39:00.006Z

On October 5, 2005, I underwent a procedure known as a small bowel follow through (a radiologic examination of the small intestine in which x-ray pictures of the abdomen are taken every 15 to 20 minutes to record the flow of barium as it passes through the small intestines.) During the procedure I was able to view on the nearby TV screen live radiographic images of my spine and abdomen as I moved on the steel examination table beneath the x-ray machine. (The scenario reminded me of the scene in Total Recall where Arnold Schwarzenegger as Douglas Quaid passes through x-ray security upon entering Mars. You can see his skeleton as he moves.)

I saw a tangled mass in the small intestines at its junction with the large intestines that was preventing the barium from passing. This finding may have been recorded on the test CD, which I obtained but can't open without the expensive DICOM medical software used to produce the file.

I never took myself for someone who'd get excited about biological discoveries within my own body. But seeing firsthand the opaque mass referenced in Dr. Elise Berman's March 2005 CT scan report brought to life what those words meant and how the mass was impeding my body's ability to function properly. Her report states that the cecum, the first part of the large intestines to which the appendix is attached, was redundant or exceeding what is needed or normal and was extending into the deep right pelvis. This quagmire in the ileocecal region was inhibiting the normal passage of food along the digestive tract within both the small and large intestines.

Because radiologists won't speak directly with patients and because I was unable to get any doctor to address my questions about health implications from CT scan findings, I can only surmise that Dr. Berman was describing an infected appendix or a hernia, in which part of the intestine protrudes through a weakness in the abdominal wall, or an intussusception, in which part of the intestine telescopes in on itself. All of these conditions cut off the blood supply in the affected area, may cause tissue death, and can be the source of an obstruction.

Dr. Djamil Fertikh, the per diem physician conducting the exam at Inova Alexandria Hospital, became quite irritated at both how long the test was taking and at my questions, which he refused to or could not answer. He had me walk the halls of the hospital between x-ray sessions in order to get the barium moving through the small intestines. To stay warm as I walked, I draped multiple blankets around the skimpy hospital gown I was wearing. I looked like I was wearing a ridiculous bulging toga.

Dr. Fertikh had me turn from side to side and switch from lying on my back to my stomach on the x-ray table like a fish out of water as he manipulated my abdomen with an instrument known as a paddle. This instrument is designed to separate overlapping intestines to get a clearer x-ray view. But in my case, the paddle didn't untangle the intestinal mass on screen. In fact, during the last few x-ray sessions, the attending assistant exhibited increasing alarm with the intensity with which Dr. Fertikh was using the paddle on my abdomen to get the barium to move beyond the tangled mass. At one point she remarked, "You took that last beating well."

"Look, I can't leave until the barium moves through to the large intestine." Dr. Djamil Fertikh exclaimed as he became increasingly irritated that it was taking so long to complete the SBFT exam.

My inquiries about what was on screen and the potential for a partial obstruction were met at first with such quips as "I don't know." Later his responses turned into exasperation with comments like, "Look, I can't leave until the barium moves through to the large intestine." That comment left me with the distinct impression that he had another appointment elsewhere, perhaps at his private practice where patients were waiting to be seen even though he was being paid by the hospital to be on site for the day. Toward the end of the exam, extremely exasperated, Dr. Fertikh pulled the TV monitor close and draped the monitor's black covering over his head so that I could no longer see what was projected on screen. I wondered if the black covering was intended to be used as a radiation shield and what all the radiation exposure could be doing to my body.

It took four hours - from 9 a.m. until 1 p.m. - to get the barium to begin to flow into the large intestine even with the unorthodox paddle gyrations. Around noon, I got a severe headache and felt sick to my stomach. I'd had nothing to eat or drink since midnight the night before. I could be imaging things, but I was getting strange vibes from the various medical personnel taking part in my SBFT exam. It was a feeling that what was taking place was not typical.

You'd at least think that the abnormal length of time it took to complete the test or the clearly visible mass would have been noted on the physician's report. It wasn't. Instead, his report stated the examination was within normal limits with no evidence of gastrointestinal obstruction. (I guess that's one way of getting out of having to describe something you can't explain.)

In reviewing all the paperwork connected with the SBFT, I noticed marked discrepancies about findings, the diagnosis and what actually took place during the test. For one thing, Dr. Fertikh's report stated the diagnosis as ulcerative colitis, typically a condition of the large intestine. The script from the prescribing gastroenterologist, Dr. Ronald Barkin, on the other hand, stated the diagnosis as simply colitis.

Dr. Barkin also specified that the reason for the procedure was to rule out Crohn's disease. ("Dx: Colitis r/o SB Crohn's.") In his September 29, 2005 report to my primary care physician, Dr. Barkin wrote: "The patient continues to have various abdominal complaints as well as complaints of what she believes to be claudication. In light of her history of nonspecific colitis, I have recommended a small bowel follow through to evaluate for the possibility of Crohn's disease or a stricture."

Dr. Fertikh never addressed the question of whether or not I had Crohn's disease or stricture in his report. Causes of small bowel obstruction include Crohn's disease, which causes adhesions or inflammatory strictures like the one that prevented the barium from passing during the exam. I tried to explain to Dr. Barkin at the follow up visit the unorthodox use of the paddle and Dr. Fertikh's failure to mention the obstructing mass in his report. When I inquired as to whether these strong manipulations to a patient's abdomen during testing compromised test results, Dr. Barkin said he'd never heard of the paddle being used in this manner and would look into it and call me.

He even wrote in his report to Dr. Silis on October 25, 2005 that the radiologist allegedly had difficulty seeing the last inch of the terminal ileum, and that he would contact the radiologist for reevaluation and call me in the next few days. He never did. My own efforts to lodge a complaint directly with the hospital resulted in a series of transferred phone calls and a game of phone tag with the hospital administrator. I was too sick to continue what was likely a useless pursuit anyway.

To address my slow motility (the rate that food moves through the digestive tract), Dr. Barkin prescribed Zelnorm 6 mg, a drug designed to treat severe, chronic constipation. The drug did nothing to help me move my bowels. Zelnorm's maker, Novartis Pharmaceuticals Corporation of East Hanover, NJ, withdrew Zelnorm from the U.S. market on March 30, 2007 at the request of the FDA based on the finding of "increased risk of serious cardiovascular adverse events" with use of the drug. Dr. Barkin's notes from September 29, 2005 document my complaints of claudication (pain especially in the leg muscles due to an inadequate blood supply) which may have been exacerbated by the drug. (The symptom that doctors call "claudication" feels like a "Charlie horse" type cramp. This leg cramping often awakened me from sleep.) My leg veins were showing signs of thrombophlebitis (inflammation of the vein in conjunction with the formation of a blood clot.)

At my request, Dr. Barkin tested me for the presence of H. pylori, a bacterial infection known to cause ulcers. I tested positive and was prescribed a combination of Prevacid, amoxicillin and Flagyl. The prevalent train of thought had been that one course of the three medications taken together would eradicate the offending pathogen. However, current research noted in the Townsend Newsletter found that the increasing incidence of H. pylori infection with age indicates persistent, perhaps lifelong infection due to the organism's ability to survive normal antibiotic therapy. It is now known that H. pylori infects when acid output in the stomach is lowered and then migrates below the mucous layer in contact with the epithelium to protect itself from acid output.

Chronic infection by H. pylori is the most common cause of atrophic gastritis (chronic inflammation of the stomach mucosa leading to lowered stomach acidity). This bacterial pathogen is a common focus of chronic inflammation, implicated in progressive diseases such as atherosclerosis, Alzheimer's disease and depression. This inflammation impairs the stomach's ability to secrete substances essential for digestion, and leads to vitamin B12 deficiency, nutrient malabsorption, increased intestinal permeability and small intestinal bacterial overgrowth. In addition, the symptoms synonymous with the chronic elevation of pro-inflammatory cytokines TNF, IL-1 and IL-6 resulting from prolonged H. pylori infection are the same symptom manifestations seen with chronic fatigue syndrome and fibromyalgia.

In my reading I also found that the acid blockers I'd been prescribed for heartburn and nausea and had been taking for years were causing the onset of dementia by permanently blocking the ability of the parietal cells to produce intrinsic factor which is needed for the absorption of vitamin B12. Symptoms of B12 deficiency can mimic those from Alzheimer's disease. I found this occurs with both H2 antagonists and proton pump inhibitors.

Cimetidine and Prevacid are examples of drugs designed to reduce stomach acid, but they do it in different ways and have different adverse effects. Cimetidine is a histamine H2 antagonist, and Prevacid is a proton pump inhibitor. H2 antagonists can cause bradycardia (a resting heart rate less than 60 beats per minute.) Proton pump inhibitors have been shown to raise risk of C dif. infection and reduce the amount of calcium dissolved in the stomach. Proton pump inhibitors and H2 blockers lower stomach acidity, which in turn, reduces the absorption of many nutrients, including potassium, phosphorus, iron, vitamin B1 and folic acid. It's also suspected that acid suppression results in inefficient elimination of pathogenic organisms.

The fact that I had been experiencing gastrointestinal distress for a long while is evidenced by my October 19-23, 1983 hospitalization for gastrointestinal bleeding at Georgetown University Hospital. I was treated with intravenous Cimetidine 300 mg and transfused with two units of packed red blood cells. Upper endoscopy revealed a 2cm hiatal hernia with mild reflux esophagitis and a shallow .3cm ulcer in the proximal portion of the body of the stomach. A report from an Upper GI noted: "spasticity through the area of the pylorus with delayed emptying and thickened duodenal folds which are suggestive of inflammatory process." An electrocardiogram revealed sinus bradycardia (a slow heartbeat indicative of either a circulatory or central nervous system disorder.) I was never tested for H. pylori at the hospital. I never had a bowel movement during my hospitalization. The pathology report was still pending upon my discharge and missing from my retrieved medical records.

How awful I was feeling and Dr. Barkin's cavalier attitude about my distress seemed incongruous. I wanted to see a gastrointestinal surgeon who could read and discuss my X rays with me, but surgeons won't see you without a referral. You don't have to be a physicist to discern that the harder you push against something, the harder it resists. Perhaps I was pushing too hard in asking the doctor about certain tests and procedures to get a more definitive diagnosis and comprehensive treatment plan. On the other hand, I'm not convinced that not pursuing a deeper look into my ailment would have resulted in a better or even in a different outcome. Upon reflection, I think I was fighting against someone's instant observation and now stalwart opinion that I didn't look sick enough to be in such distress. It's been shown that we humans make our minds up about someone in the first eight seconds after introduction.

Dr. Barkin and I discussed the possibility of pursuing endoscopy of the upper GI tract and camera testing. Dr. Barkin said he was fine with doing an upper GI but added that he didn't think it would produce any more helpful information. He also characterized my suggestion of swallowing a camera pill to take pictures of my esophagus, stomach and small intestine as counterproductive. He said that since I had such slow motility, it was likely the camera would run out of film before making it all the way through the digestive tract. Then, he said, it would likely be assumed that the camera's results were thorough regardless of whether the entire tract was actually photographed, possibly indicating a false negative test result.

At each of the office visits, Dr. Barkin seemed preoccupied. Upon further inquiry he revealed that once he had been up most of the prior night with his daughter who was suffering from psoriasis, or that he had just learned that a good friend's father died after being told the previous day by physicians that he was healthy. Dr. Barkin said his friend's dad moved here from California to be near his grandkids. He said the guy was a healthy, active 72-year-old. He went to emergency for what seemed like a heart attack or stroke and was discharged as being okay. He said the guy died within hours of being discharged. He said the autopsy revealed a previously undetected 10 centimeter cyst in the deceased's sinus cavities.

Once he remarked that his days were filled with so many procedures and patient visits, that it was all beginning to blur. It makes you wonder how doctors can keep from mixing up patient information in their minds. Perhaps confusion or forgetfulness is the reason Dr. Barkin's initially stated diagnosis differed from the written one. Perhaps having forgotten what he'd seen during the colonoscopy, he referred to the pathologist's findings of nonspecific mucosal biopsies indicative of colitis. Never mind that biopsies weren't taken of the abnormal colonic mucosa in the sigmoid colon but of inflammatory tissue in the descending colon. Composition of the abnormal colonic mucosa remains a mystery to this day. I keep wondering if this is colon cancer, particularly since testing positive for a colon cancer marker.

Noted author Dr. Atul Gawande writes about an animosity that exists between surgeons and doctors. He says, for instance, surgeons ridicule doctors for wearing "collars," the stethoscopes around their necks, rather than placing the instrument in the pockets of their white coats as surgeons typically do. This animosity might explain doctors' reluctance to refer patients to surgeons as if such referral would be construed as an admission that they lacked the knowledge to treat patients themselves. I noticed this animosity between doctors as well. It appeared centered around differences in beliefs about disease and competition for recognition. Dr. Barkin exhibited traits of this animosity when relaying the story of how, years earlier at university, a supervising doctor took credit for his thesis findings after this same physician castigated Barkin for his research.

Threatened doctors go into defensive mode. If there is risk of a lawsuit, what becomes important is not whether the patient improves but whether the doctor has enough documentation to prove everything possible was being done -- all possible consultants consulted, all possible tests conducted -- to prove to future investigators that the doctor cannot be blamed when a patient is not doing well. This uniform mechanical approach of practicing medicine is intended as a means of protecting doctors from lawsuits. In this process the patient commonly suffers from undergoing unnecessary and sometimes even harmful tests, such as increased risk of cancer from exposure to ionizing radiation from unnecessary and duplicate CT scans. Many patients are not aware recent studies revealed one CT scan exposes one to at least 100 times the radiation of a chest x-ray.

A doctor who cannot find the disease causing a symptom more often than not will tell the patient nothing is wrong and imply that the patient is crazy. No treatment is offered even though disease may well exist. Doctors who got religion after finding themselves or a family member afflicted with chronic disease write in their books about patients "making the rounds" for years before finding a doctor who is familiar with the patient's ailment. The internet is filled with patient stories about suffering for years before finding a knowledgeable and caring physician. I can't help thinking that our doctors are contributing to the decline of our nation's health when even science recognizes that festering disease causes toxic chemical reactions within the body that eventually reach the brain and result in secondary conditions like schizophrenia.

Some people talk about how well their loved ones were medically treated by their doctors before their loved ones died. This is more likely a rationalization, an inability to come to grips with the possibility that there may have been more that they could have done to ensure their loved ones were getting the best care. After all, had doctors diagnosed illness sooner perhaps the loved ones wouldn't have died.

Many say doctors treat symptoms not the disease. Med schools began offering new acting classes to help doctors appear to be more caring to patients. Hospitals are called staging areas for the morgue. There's a reason for all of this. Whether we care to admit it or not, our current private health care system is designed to make chronically ill patients comfortable in their last days. It is not designed to provide the kind of Sherlock Holmes investigational care that Dr. Gregory House portrays in the popular TV show "House" Let's face it, our health care system is set up to run as a private company that answers to shareholders looking for profits much like Enron and companies involved in the subprime mortgage market. I'm not sure government run universal care is the answer either, but there has got to be a better way.

The Story #11: Female Problem Mysteries

2008-11-05T09:42:00.005Z

"You're around 50. Just wait a few months. It'll all go away. You can wait that long, can't you?" Dr. Norman Tacktill's response to my complaints of painful, heavy periods and endometriosis.

In mid-June, I saw Dr. Norman Tacktill for abdominal and endometrial tissue pain that was radiating down my left leg and to the back. Dr. Tacktill was referred by my primary physician, Dr. Silis, who said Tacktill delivered his and his wife's first baby. He examined me and concluded that my pain was all colitis related. He wasn't convinced I had endometriosis even though a recent sonogram noted the existence of an endometrial strip. He said the only way to diagnose endometriosis is through pathology and by biopsying the entire uterus, which would entail getting a hysterectomy. He likened the typical tissue biopsy to playing the mechanical "claw" game in which the operator of a toy crane fishes for toys and prizes. More often than not, he said, the claw comes up empty handed.

He said my being around 50 years old, if I waited a few months, the pain from my dysmenorrhea (painful, heavy menses) and endometriosis would go away. "You can wait that long, can't you?" he asked rhetorically. I continued to have monthly periods for the next two years.

He seemed perturbed at my questions about options for treating my endometriosis. He leaned back in his chair, crossed his arms and gave me the look of a doctor who had become irritated that a patient had the gall to question his knowledge. I requested a dilation and curettage or D&C (a procedure used to determine abnormalities in the uterine lining). He said this procedure was usually only considered if biopsy results were inconclusive. He didn't recommend either the D&C or the biopsy. He said laparoscopy was often used to determine the cause of pelvic pain and other gynecologic disorders, but he didn't recommend this procedure either.

When I suggested investigating hormonal changes that may be causing my abnormal uterine bleeding, Dr. Tacktill declared that it was impossible to get a true reading of someone's hormones because hormone levels fluctuate vastly even within the same day. The assertion that hormone levels cannot be ascertained with any certainty is contested by many medical practitioners who pool multiple saliva samples throughout the day or require a 24 hour urine test to give a truer reflection of hormone levels.

In fact, Dr. Mitchell had recommended a Meridian Valley Laboratory 24 hour urine hormone analysis, which was completed in October 2004 with supplemental report on June 16, 2005. My results were so out of the norm that Dr. Mitchell wasn't sure what to make of it, and I have very little understanding of what the results mean. In his October 2004 report, the lab physician, Dr. Jonathan Wright, wrote that my total estrogens and progesterone were both low, and the testosterone level was barely normal. He stated that the estriol level indicated incomplete estrogen detoxification, that DHEA and androsterone levels were low, and etiocholnolone was barely normal. He added that four minor "tetrahydro" derivatives of more major steroids were lower than normal.

Further evidence of the extent of my medical problems was seen on an abdominal sonogram taken May 10, 2005. The report noted mild fullness of the right intrarenal collecting system and that the right renal pelvis was prominent in size. Dr. Alexis Kladakis, the examining physician, suspected this finding may be related to reflux or obstruction. The sonogram also showed evidence of endometriosis and multiple tiny clear cysts within the uterine myometrium (the thick muscular layer of the uterus), which Dr. Kladakis noted, indicated adenomyosis.

Adenomyosis is defined as the presence of endometrial glands and supporting tissues in the muscle of the uterus where it would not normally occur. When that gland tissue undergoes growth during the menstrual cycle and then subsequent sloughing, the old tissue and blood cannot get out of the muscle and flow out of the cervix as in normal menses. This trapping of blood and tissue causes uterine pain (menstrual cramps) and abnormal uterine bleeding as some of the blood finally escapes the muscle. This results in prolonged bleeding and spotting. It is often associated with fibroids and other conditions such as ovarian cysts, prolapse and even gynecological cancers that can cause pelvic pain.

Up until recently, it was said that adenomyosis was only diagnosable by the pathologist looking at a hysterectomy specimen. Now magnetic resonance imaging (MRI) can more accurately diagnose adenomyosis. MRI is the preferred diagnostic tool for focal lesions, which can be treated by surgical resection of the endometriosis without doing a hysterectomy.

Although ultrasound can also be used to diagnose adenomyosis, sometimes it has difficulty differentiating smaller fibroids (leiomyomas) from adenomyosis.

I had an inkling that misplaced endometrial tissue had adhered to structures in the abdomen and were causing the fistula formations to which Dr. Barkin had referred. It's possible these fistulas were caused by endometrial cells or tissue that migrated outside of the uterus through the blood or lymphatic vessels. Contrary to what some doctors believe, in endometriosis, misplaced endometrial tissue grows on the membranes of other organs or causes scar tissue to grow in the abdomen (and sometimes elsewhere), which can bind internal organs to each other, causing organ dislocation. When binding occurs, the pain can be more debilitating on a daily basis than the painful menstrual symptoms of endometriosis.

Bowel endometriosis is said to affect approximately 10% of women with endometriosis, and can cause severe pain with bowel movements. In my opinion, my pain was severe enough to warrant a laparoscopy. But none of the doctors I was referred to for abdominal and pelvic pain were surgeons, so none were keen on my suggestion for laparoscopic surgery (a minor surgical procedure in which a laparoscope, a thin tube with a lens and a light, is inserted into an incision in the abdominal wall to detect abnormal growths).

Part of the problem, I found, is that doctors don't seem to be keeping up with the latest advances and medical knowledge. Many of the doctors I saw held antiquated ideas about endometriosis and yeast infections or didn't know that the symptoms of coronary distress in women differed from those in men. None seemed to grasp the importance of referring a patient needing treatment for endometriosis to a gynecologist specializing in the function and diseases of female reproductive organs rather than to an obstetrician specializing in delivering babies who sidelines in gynecology. The "gynecologists" I saw readily admitted their passion for obstetrics when I tried to engage them in a conversation about treatments for endometriosis. They recommended oral contraceptives or estrogen therapy to alleviate painful menses. Had they known that estrogen not only encourages systemic yeast growth but also leads to depressed cellular immunity, they should have informed the patient whose life was at risk.

Endometriosis is thought to be an autoimmune condition. Women with endometriosis commonly have problems with extraordinarily painful periods and severe cramps. In severe cases, the bleeding can continue for weeks, leading some women to require iron supplements and even blood transfusions. Additionally, women with endometriosis frequently suffer from painful ovarian cysts, making ovulation quite painful. Sometimes, the cysts burst and can cause life-threatening infections in the pelvic cavity. A CT scan of my abdomen and pelvis taken on June 7, 2005 found small cysts on the ovaries and liver.

On June 22, 2005, I saw nephrologist Jenny Nazzal for pain that radiated from the lower abdomen in front to the kidneys in back. Dr. Nazal ordered a comprehensive metabolic panel, urine protein electrophoresis, urine C&S and U/A. There was nothing out of range indicated on the test results.

In the waiting room above the receptionist's counter, there was a sign stating that only questions about the kidney will be addressed. Of course, she's a nephrologist, I thought. I didn't realize until I tried to have a conversation with Dr. Nazzal how difficult it was to limit your subject specifically to the kidney. I felt certain my questions were kidney related. But all were deflected with responses like, "That's urology," or "That's outside of the kidney."

She had no idea what low serum uric acid indicated. She told me that 90% of her patients needed to be hospitalized, hence she was used to seeing patients much sicker than me. I suppose she could tell I was exasperated by cyclical discourse that never broached on a possible cause for the pain in the area of my kidneys. At the end of our follow up visit, she admitted, she didn't know. She said, "Maybe you had a kidney stone pass. Maybe you didn't. I don't know." I give her credit for saying that she didn't know. Her statement says more about the true state of medicine, the art of healing the sick, than about anything particular to her.

Not long after my visit with Dr. Nazzal, Julie, a physician's assistant in Dr. Mitchell's office, asked me about my office visit to the nephrologist. "Another dud," I said. "She didn't know the significance of low serum uric acid, either. She said that meant I had less of a chance of developing kidney stones." Julie said she knew that was BS. She said the same thing happens with low cholesterol. "Some doctors think low cholesterol is good," she said, "but it's like low serum uric acid and other borderline blood work results. The results actually indicate an underlying condition that may be detrimental to health."

On July 20, 2005, I saw urologist Dr. Richard Rhame for further evaluation of what could be causing my collecting system dilation. Dr. Rhame was an older man with a respectable list of accomplishments, having earned his BA from Princeton University in 1950 and his MD from The George Washington University Medical School. He interned at Johns Hopkins University and served as a medical officer in the U.S. Navy before completing residencies in general and urological surgery at Yale Medical Center. He had served as Chief of Urology at both DC General and Alexandria hospitals.

Personally, I found him to be guilty of pride and hence not very helpful to me. With pride comes blindness. You think you already know the answers, so you don't bother to check the facts. Like some other doctors I saw, Dr. Rhame believed that aside from oral thrush, yeast or fungal infections occurred only in women's vaginas. He had never heard of systemic yeast infections of the gastrointestinal tract. He didn't know the significance of low blood uric acid. His notes indicate the uric acid tests he conducted were intended to rule out gout, the result of high uric acid levels. To me, it seemed as if he had this static knowledge base learned in medical school. It had served him well over the years, so why change things now?

Dr. Rhame wanted me to undergo a voiding cystourethrogram (a test that takes video of contrast dyed urine as it flows through the urinary tract) to identify any blockages or reflux that could be causing the dilated collecting system. He couldn't tell me the recommended treatment for reflux. The procedure is invasive and involves injecting contrast fluid, a known cause for precipitating crystals that can lead to kidney stone formation. I had already experienced ill side effects of contrast dye from two previous abdominal CT scans. This was a non-starter.

If you're considered guilty by association, it's at least noteworthy that complaints were filed with the Virginia Medical Board against one of Dr. Rhame's colleagues at Alexandria Urological Associates, Dr. Jeffrey Wong. The medical board found in favor of the physician who was alleged to have wrongfully removed a patient's kidney thought to be cancerous. In Wall of Silence, authors Rosemary Gibson and Janardan Prasad Singh write:

"Complaints to the state medical boards about a physician's incompetent or negligent care rarely end up in a disciplinary action. Medical boards are much more likely to discipline a doctor for abuse of drugs or alcohol than for care that doesn't meet a quality standard the public would expect. A doctor in Virginia was found guilty in federal court of unlawful sexual conduct with a patient and was sentenced to a month in jail. According to state records, it took two years for the medical board to notify the physician that his license to practice would be placed on probation and that he must complete fifty hours of continuing medical education and undergo a psychiatric evaluation. Even though his license was restricted, he was still authorized to see patients, with the provision that a chaperon be present for all physical exams of women and of children under the age of 18. The medical board wrote to the physician a year later stating that he complied with all the terms set out by the board, that his license to practice medicine was no longer restricted, and that he no longer needed a chaperone when conducting physical exams."

Medical malpractice attorneys often advise their harmed clients against contacting a medical society or board regarding the doctor and care received. They say if the medical board fails to find fault with the care provided, the determination may be used as part of the doctor's defense in the client's case. In addition, typically such boards solely act as disciplinary bodies. A ruling against a medical provider would not provide the harmed monetary compensation or needed medical assistance.

The Story #10: The Colonoscopy

2008-11-05T09:12:00.006Z

On May 12, 2005 Gastroenterologist Dr. Ronald Barkin performed a colonoscopy at Inova Alexandria Hospital. The operative report noted findings of small internal hemorrhoids and notable diffuse inflammatory change with ulceration in the descending colon, the sigmoid colon and rectum. The surgical pathology report confirmed the presence of lymphocytes, neutrophils and eosinophils within the lamina propria and surface erosion. Colonoscopy examination images showed erythema (redness of the skin caused by capillary congestion) in the descending and sigmoid colon as well as the rectum and abnormal colonic mucosa mid-sigmoid. I was puzzled to read in the pathologist’s report that the biopsies taken were from the descending colon when the abnormal mucosa was in the sigmoid colon.

At the office follow up visit, reading from notes in a stenographer’s notebook, Dr. Barkin revealed that inflammation in the colon was causing swelling that severely reduced the size of the opening between the large intestines and the rectum. This condition, he said, was causing a bottleneck and back up of mucus-entwined fecal matter in the large intestines and severe constipation. The mucus-entwined fecal matter, he said, had coated the folds in the intestines. He said that fistulas were beginning to form which may be attaching the rectum to other organs. He said in light of this, it was not unusual that I was experiencing IBS symptoms and that it was possible I had Crohn’s disease. He said diagnosis of Crohn’s or the extent of the fistula activity could not be determined by colonoscopy. He also said he saw ulcerations that looked like someone had put out cigarettes in my intestines.

When I asked for a copy of the operative report, he said he changed the diagnosis from ulcerative colitis to general non-specific colitis on his written report to the insurance company (Cigna) and my primary care physician, so as not to chance my medical insurance being cancelled. By downplaying the extent of problems found during the colonoscopy on the written report, Dr. Barkin made it infeasible for me to get the necessary gastrointestinal laparoscopic surgery I suspected I needed.

When I mentioned to Dr. Silis that Dr. Barkin told me he downplayed my diagnosis from ulcerative colitis to nonspecific colitis so that my insurance wouldn’t be cancelled, Dr. Silis said he had never heard of such a thing and dismissed the thought. It didn’t matter that the operative report is somewhat contradictory in its description of the presence of ulcerations and the stated diagnosis of nonspecific colitis. Once Dr. Silis saw the diagnosis of colitis, he determined my condition was not serious, and his entire demeanor toward me changed as if I was no longer someone to be taken seriously. After all, whom would you believe? The short person who looks like a kid or the prominent doctor who you’ve known for years?

It’s baffling to me that some doctors don’t give a second thought to “doctoring” or “tailoring” their reports to reflect a malady less severe than the disease they found for insurance purposes. What about the repercussions of such action on the patient’s continuing care? Then again, this case may simply be indicative of the physician’s personality. On one office visit I found Dr. Barkin preoccupied with trying to figure out a way to keep from having to pay higher scuba insurance premiums for an upcoming trip.

Dr. Barkin prescribed Asacol, medicine typically used to treat ulcerative colitis, to reduce the inflammation. He suggested pursuing other diagnostic procedures if painful symptoms persisted. While somewhat helpful in reducing systemic inflammation, particularly in my head, the Asacol did nothing to correct the bottleneck in my large intestine — a condition that likely existed over a predominance of a lifetime but had now become intolerable. Only by reducing the consistency of fecal matter to diarrhea through the use of cascara sagrada and colon cleansers and with the use of enemas was I able to have a bowel movement. From as long ago as I can remember, nausea and painful contractions accompanied going to the bathroom. It seemed to me that a pouch had been created at the site of the stricture and no oral medication was going to do the trick alone. I needed surgery and intravenous fluids to address infection, my electrolyte imbalance and give my intestines time to heal. I also needed someone to do a proper biopsy and sensitivity test on the identified pathogen(s) to determine optimal treatment protocol.

One possible explanation for my condition was toxic colitis, a particularly severe complication that involves damage to the entire thickness of the intestinal wall. The damage causes ileus, a condition in which the normal contractile movements of the intestinal wall temporarily stop so that the intestinal contents are not propelled along their way. Abdominal expansion or distention occurs. X-rays of the abdomen show gas inside the paralyzed sections of the intestine. Flare ups of inflammation are the same as those with Crohn’s disease.

A colonoscopy confirms a diagnosis of toxic colitis and lets the doctor observe the extent and severity of the inflammation. Even during symptom-free periods, the intestine rarely appears entirely normal, and tissue samples removed for microscopic examination usually show chronic inflammation. Some people may have ulcerations from an undetected infection rather than true ulcerative colitis. Treatment aims to control the inflammation, reduce symptoms and replace lost nutrients and fluids. Surgery is performed on a non-emergency basis when precancerous changes (dysplasia) are identified or because of a narrowing of the large intestine. This description fit my situation precisely.

A second CT scan of my abdomen and pelvis taken on June 7, 2005 confirmed previous findings of a colon filled with “a moderately large amount of stool throughout the ascending, transverse and descending colon.” Dr. Carlos Artiles, the radiologist, noted that the degree of constipation was somewhat improved compared to the previous study completed March 11, 2005, but noted the presence of “a moderate to severe degree of constipation.” In his report summary, Dr. Artiles again notes: “There is stool and fluid throughout the colon…” Based on this, I found it curious that Dr. Barkin’s notes to my PCP, Dr. Silis, dated June 17, 2005 states that the June 7th CT scan “showed much less stool and less inflammatory change, the details of which are to be reviewed once study is obtained.”

When I asked Dr. Barkin to clarify the radiologist’s report, Dr. Barkin suggested I get a second opinion and recommended the Association of Alexandria Radiologists (AAR), which completed the CT scan in question. Steve Richardson, the AAR office manager, told me he needed the previous radiologist’s report in order to provide an independent second opinion of the scan. He said because radiologists don’t speak directly with patients, he would have Dr. Michael Freedman, the radiologist, call the results into Dr. Barkin. Dr. Barkin later told me that Dr. Freedman said that the original report “was about right.” This was useless information to someone seeking to understand the significance of the report’s findings and flush out the discrepancy between the radiologist’s and Dr. Barkin’s notes. The June CT scan report was not nearly as detailed and precise as the March CT scan report taken at Fairfax Radiology. In fact, I suspect the quality of the second scan was compromised based on the radiologist’s further notes, which stated he had difficulty visualizing the pelvic organs due to “very little fat planes.”

“That’s about right.” Dr. Ronald Barkin’s response to my request for an interpretation of the radiologist’s report.

I know it’s not easy comparing radiographs and picking out the changes. It takes me forever to identify the dozen or so modifications made to one of the two side-by-side photos in the Sunday Washington Post Magazine. And I know radiologists don’t get nearly that amount of time to look at patient scans.

In his book, How Doctors Think, author Jerome Groopman, M.D. talks about the daunting task facing radiologists today. First, the radiologist makes an observation, then analyzes what he sees, determines what it means and tries to explain the finding, all within minutes. This process is then repeated over and over during the hours of a working day.

Groopman found that the volume of cases radiologists are being required to review has increased from 12,000-15,000 cases a year a decade ago to a workload of from 16,000-25,000 cases today. Cases with CT scans and MRIs generate hundreds of images each. And from this multitude of images, radiologists must distinguish normal from abnormal within seconds.

Groopman points out a study conducted by Dr. E. James Potchen at Michigan State University on the performance of more than 100 certified radiologists reading chest x-rays. In one instance, study participants were shown a series of 60 chest x-rays and had to determine if each film was normal. One of the films was of a patient who was missing his left clavicle. Remarkably, 60 percent of the radiologists failed to identify the missing clavicle.

The study further revealed that radiologists’ performance detecting abnormalties markedly improved if they were given some context for what they were looking for. That’s why I think it’s important for radiologists to speak with patients about their scans.

That radiologists aren’t permitted to speak directly with patients is wrong. So is billing the patient and medical insurer for an office visit with the radiologist in addition to the fee for the CT scan when such visits aren’t permitted and never occurred.

In July 2005, I was surprised to receive an invoice for a $15 co-pay from Computed Tomography Associates, PC (CTA), the billing service for AAR, which performed the CT scan. Lilly at CTA told me that CTA considered the radiologist’s time for reading the scan as an office visit and that Cigna had already paid its share of the fee for the fictitious office visit. An office manager at AAR confirmed that AAR regularly bills for both the scan and a separate office visit with the radiologist even though there is no actual meeting between the patient and the radiologist.

I never paid the $15 co-pay. There was no co-pay required for CT scans under my Cigna plan. It took several phone calls to Cigna and CTA customer care over a few months and various inane conversations that focused on my co-pay status rather than on AAR’s breach of contract with Cigna to get the matter rectified. All this wasted time and energy for a poorly written report that concentrated predominantly on the amount of stool and fluid in my colon and the fact that the pelvic area could not be visualized well.

I think it’s difficult for people to imagine that which they haven’t experienced firsthand. That’s why many physicians don’t consider chronic constipation a serious complication. They dismiss the condition with recommendations to use suppositories, laxatives or increase fiber and water intake. Well if you consider an obstructed intestine is like a kinked water hose, it’s not hard to see that no amount of streaming water is going to straighten out the hose so that it functions properly. More likely, you’ll end up with a bubble at the kink that bursts and springs a leak from the build up of water pressure. I think that’s what’s happening inside of me.

As we age, the intestinal tract lining becomes covered with hard fecal matter and mucus, which makes absorption of nutrients more difficult. Fecal deposits can irritate nerve endings in the colon which leads to spastic or inflamed colon. Both of these conditions interfere with bowel function and with proper absorption of nutrients. In addition, the impacted deposits decay after a time which releases toxins that seep into the bloodstream poisoning the organs and tissues.

Resultant constipation slows down food transit time. When transit time slows, putrefied fecal material stays in the colon longer. This, in turn, can lead to a buildup of toxic material along the intestinal walls which not only reduces the absorption of nutrients and but also increases the absorption of toxins. This absorption of toxins is a form of self-poisoning or autointoxication. Decaying food ferments, forms gases as well as various digestive byproducts and toxins, which enter the bloodstream and lymphatic system, settle into tissue, hence creating many disease states including autoimmune disorders. Colon cancer, the second leading cause of death in the U.S., results from years of autointoxication.

A study, published in the Journal of the American Medical Association in 2008, suggested that more careful colorectal cancer screening is necessary. In traditional colonoscopies, long considered the gold standard test for detecting colon cancer, a doctor snakes a long, thin tube equipped with a small video camera through the large intestine to view the lining. Doctors use the device to cut away a tissue sample or remove polyps. This medical study found that flat growths on the colon wall are more likely to be cancerous than the more familiar knobby masses or polyps that gastroenterologists are used to finding.

This makes me wonder if the surface ulcerations which Dr. Barkin noted on the colonoscopy report might have been cancerous flat growths. I also find it curious that those involved don’t care that biopsies were taken from areas other than where photos indicate abnormal mucosal tissue was detected. It’s as if performing biopsies was, as one doctor put it, like playing the mechanical claw game for toys and prizes — you get what you can. I’d like to think there’s a bit more at stake here and that modern medical equipment is a bit more sophisticated.

Physicians ask me, if I’m so sick, how come I’m not in the hospital? In my search for competent care, I found a pervasive belief among doctors and patients alike that seriously ill people go to the emergency room and are treated in hospitals, not by outpatient doctors. I also found in my attempt to be treated in the ER in 2003 for what I suspected was internal bleeding that the ER’s mission is to stabilize patients, not necessarily to treat them.

Doctors told me that if I had such a serious condition, I’d appear to be much sicker than I appeared to them in that instant. I suppose I could go to the doctor’s office and make all the gross sounds that sick people like me typically make at home alone in their bathrooms. Then again, there’s no pleasing some folks no matter what you do. It’s doubtful that without a double blind study backing my contentions that they’d believe me anyway.

Do they really want me to delve into a dissertation on abdominal distension and painful gas formation? Should I elaborate on the feeling of incapacitating nausea, occasional vomiting and bright red blood in the feces? For one thing, there’s not enough time to impart this during your typical doctor’s office visit. I’d like a doctor to do me a favor and show me a photo of what he considers to be a sick outpatient — not someone on his deathbed now too sick to help — but someone sick who is still considered viable enough to reclaim his health.

Malcolm Gladwell, in his book, Blink, talks about the benefits and failures of rapid cognition — the decisive glance that knows in an instant. I found that medical personnel often employ this instant decision making phenomenon in deciding whether a patient is seriously ill by the way the patient looks. Many doctors place more emphasis on superficial visual observation of the patient in reaching a diagnosis than on positive test results. They equate being seriously ill with the appearance of intensive care patients on their deathbed.

Such thinking is evidenced by the wording in my medical record from a 1983 Georgetown University Hospital hospitalization for internal bleeding, which states: “Physical examination revealed a well developed, pale, white female in no apparent distress.” I was eventually admitted with gastrointestinal bleeding, lavaged and transfused with two units of packed red blood cells. With no obvious outward signs of illness or distress, ER attendants kept telling me to get up and leave. But I couldn’t walk. It didn’t matter that I had been transported to the hospital by ambulance after collapsing to the floor at work.

What they didn’t see was the pool of blood in my stomach from internal bleeding ulcers. While many people with internal bleeding also bleed from the anus, my intestinal obstruction prevented this from occurring. It wasn’t until after I nearly banged my head on some equipment and fell to the floor trying to comply with their insistence that I get up that one ER attendant decided to try “one more thing.” She ran a thin tube through one of my nostrils and down my esophagus. When it reached my stomach, blood gushed forth like gasoline flowing from a siphoned hose.

This subjective bias or rapid cognition was evident in various comments in Dr. Barkin’s reports to Dr. Silis. In his June 17, 2005 report, Dr. Barkin wrote: “The patient had previous colonoscopy revealing nonspecific colitis, which I have treated with Asacol and according to the patient she has had significant improvement in symptoms.” I wish this was true. What I said in response to his question, “Are you better?”, was that the Asacol was somewhat helpful, but that I did not want to use the word “better” because this would connote an improved status of my condition, which had not occurred. I can see now that this was too wordy for Dr. Barkin who preferred more direct, short, black and white, definitive yes or no answers.

The April 29, 2005 report stated that I had no nausea or vomiting. When Dr. Barkin asked me if I was experiencing nausea, I told him I was hospitalized with bleeding ulcers in 1983 and was treated with intravenous cimetidine. I said I’ve been eating Tagamet and Zantac tabs like candy daily ever since because just about everything I eat gives me acid indigestion and acid reflux. “Does the Tagamet stop the indigestion?” he asked. “Yes,” I said. “At least until I eat something else.” “Did you take any Tagamet or Zantac before coming here?” he asked. “Yes,” I replied. “Are you nauseous right now?” “No,” I replied.

When I asked Dr. Barkin about the repercussions from “leaky gut” syndrome or intestinal permeability, he replied that he could not address the issue because once a substance leaves the digestive tract, it was out of his realm (specialty). In “leaky gut” the intestines become porous and allow tiny particles of undigested food to enter the bloodstream.
######

On June 16, 2005 the pain in my back was so severe from amassed crystals passing through the kidneys, I called Dr. Silis and asked him to prescribe a pain killer. He said no. I told Dr. Silis that both kidneys hurt with pain radiating down the legs. He told me to go to Urgent Care, have my urine tested and if needed, they would write a prescription for an antibiotic. He told me to keep my appointments with the referred nephrologist and urologist, and through the process of elimination, they would find out what is wrong with me.

When speaking with Dr. Silis, I must have insinuated something derogatory about my experiences with doctors because he told me to stop “nit picking” the doctors he referred. I had an inkling that Dr. Silis’ wife’s obstetrician to which he had referred me for endometriosis treatment had complained about me. Dr. Silis asked me where I preferred to go — Georgetown? Johns Hopkins? I told him I just wanted competent care and a comprehensive diagnosis. He said, “You have all those reports.” I said, “Yes, reports — test results — listing my deficiencies. I need a doctor who can put 2+2 together and give me a diagnosis.” He said you have a diagnosis – colitis. I told him that’s just a symptom. He said a symptom is pain; colitis is a diagnosis. I told him what’s causing the colitis is the diagnosis. I told him my mom had the exact same symptoms before she died of cancer July 3, 1997. He then pointed out that the CT scan was an excellent diagnostic tool for cancer.

I wanted to make a smart ass remark about doctors looking to radiologists and others to make the definitive diagnosis, but I kept quiet. Radiologists and lab technicians report findings. It’s not their job to analyze these findings and make definitive diagnoses. That was the physician’s responsibility. Hadn’t Dr. Schuffler’s letter warned about Dr. Berman’s CT scan finding of a suspicious, possibly cancerous mass? What about the positive test marker for colon cancer? Results forgotten by doctors too busy going through the motions their attorneys told them would protect them against malpractice claims. Results each doctor figured some other doctor was responsible for noticing and acting upon. The practice of providing medical care had been reduced to nothing more than the practice of accumulating metrics no one was evaluating or making sense of.

I could feel the tension build inside of me at the notion that Dr. Silis was leaving it up to the specialists to sift through the reports and dissect their significance and meaning. But specialists aren’t necessarily trained to read radiographs or understand the significance of a radiologist’s findings. Radiologists leave it up to the prescribing physician to determine the reason an organ is decompressed or redundant. With nothing immediately coming to mind and no time to speak to radiologists or other doctors, physicians have come to rely on the testing physicians to come up with the definitive diagnosis. The testing physicians, on the other hand, see their role as limited to describing the physical findings they can discern. And if they find something they can’t explain? Better to ignore the finding than chance losing face by not being able to explain something noted on a report — like the “large bubbly radiolucent artifact” in my pelvic cavity that Dr. Platas noted in his October 26, 1995 report to Dr. Ferrer and Cigna HealthCare that no doctor could or would explain.

Dr. Silis had forgotten the reason he’d referred me to Dr. Barkin in the first place. He’d forgotten about Dr. Schuffler’s letter indicating a possible cancerous mass in my intestines. Between all the patients, Dr. Silis was simply recalling Dr. Barkin’s latest report to him that stated the colonoscopy biopsy was nonspecific and that there were no specific organisms identified. Never mind that the biopsy was taken from the wrong section of my colon. Forget that the “doctored” colitis diagnosis didn’t match the description of ulcerations found or that the treatment with Asacol is for patients with ulcerative colitis. That required too much reading and thought, and doctors are too busy going through the motions of pretending to help patients to read or think. I was in pain, and I was pissed. The one thing the discourse with Dr. Silis did, however, was get me focused on what was causing the colitis.

Thankfully, the severe pain eased on its own by the next day. My mid-back still hurt, but not unbearably. My guess is that radiographic dyes from the CT scans recently taken or a build up of calcium oxalate from the high doses of vitamin C in my intravenous solution precipitated the crystals. Then again, any of the following medical conditions I suspected I had could have caused kidney stone formation: arthritis (bone degeneration), colitis (causes dehydration and electrolyte imbalances from malabsorption), Crohn’s disease (causes dehydration and low citrate), hypertension (causes arterial plaque buildup), renal tubular acidosis and urinary tract infections (both cause crystal precipitation). I later even heard that administering radiographic dyes to a dehydrated patient can cause life threatening complications.

Fortunately, I had an appointment with Dr. Barkin the next day. At my request, he wrote a seven-day script for Pen VK. I asked if he recommended a different antibiotic for urinary/kidney infection. He said it didn’t make any difference which medicine was used since all target the entire body. He said meds don’t discriminate by area of the body treated. There seemed to be something very wrong with this last statement. Not that it wasn’t accurate, it’s just that — don’t doctors perform drug sensitivity tests on pathogens to determine which drug is most effective in eradicating the offending pathogen? I guess that assumes that an offending pathogen had been identified. I guess I assumed there was a notorious common bug typically associated with urinary tract/kidney infections.

When I talked to my various doctors about the possibility of developing kidney stones, they told me that there was nothing from the urinalysis, the CT scan or sonogram to indicate that I had kidney stones. I guess they didn’t know sonograms and CT scans usually cannot detect small stones or that it is not uncommon for abnormalities to be missed by the standard urinalysis conducted in the doctor’s office.

I found that it’s common practice to conduct a dipstick test on a room temperature urine sample only after any debris or casts settle. There are problems with this delayed testing. Urine ph of an uncovered specimen becomes alkaline as it sits because carbon dioxide vaporizes into the air. Crystals and casts break up as urine sits, and hence, elements essential for making an accurate diagnosis are lost. The presence of certain types of casts in the sediment is a sign that the kidneys may be malfunctioning.

I found many offices now only refrigerate and culture specimen sediment for microscopic examination if the dipstick test indicates infection. Other offices that perform routine urine cultures come up with an inordinate number of false negative results for a variety of reasons.

One need only go online to dozens of forums discussing today’s conventional “urinalysis” to discern the extent of the problem. Like me, many of the forum participants, who are experiencing real symptoms of infection or dysfunction, are dismissed by their care providers once their urinalysis test results state: ‘Mixed urogenital flora, less than 10,000 CFU/mL isolated. No further testing performed.” The statement is said to indicate the urine sample was contaminated with epithelial skin cells and needs to be repeated. (I can tell you I was never once asked to repeat the test after results for countless specimens stated the aforesaid.) The statement is also said to indicate that not one of the bacteria colonies present grew in numbers large enough to be identified. Perhaps the labs would have greater success with different culture media as urogenital flora, particularly the sediment, contain the clues vital for accurate diagnosis and effective treatment.

One study found that samples from individuals suffering from interstitial cystitis (chronic bladder infection), whose routine urinalysis tested negative, tested positive for enterococcus, a gram-positive bacteria, doing “broth” culture testing.(Enterococcus along with S epidermidis and diphtheroids are among the types of bacteria frequently found in the anterior urethra of humans.) In contrast to the routine urinalysis culture, the broth culturing method allows all microbial strains from the specimens to emerge. By transferring representative strains to appropriate differential media, the disease-causing agent can then be isolated for further study and reported to the physician along with the appropriate antibiotic sensitivity pattern. Evidence shows that many doctors’ common practice of prescribing broad spectrum antibiotics for such bacterial infections is of no therapeutic benefit.

My point is that those who continue to regard the sediment from urine specimens as contamination that needs to be separated from the less dense urine that is siphoned and sent to a lab for culture and microscopic examination are compromising test results. Casts are composed of certain proteins, white blood cells, red blood cells and epithelial cells. Increased amounts of albumin and other proteins in urine can signify damage to the microscopic kidney tubules, and when renal casts are visible, excess albumin is likely. Diseases in which protein in urine reaches high levels include glomerulonephritis (an inflammatory condition), lupus (an autoimmune disorder) and diabetes. Minor elevations of protein occur with hypertension and during pregnancy.

The Story #9: Hypochondria v. Multi Symptom Disease

2008-11-04T06:31:00.003Z

Taken at face value, the involvement of multiple organs in disease seems incongruous or irrelevant. However, from reading such medically orthodox sources as The Merck Manual of Medical Information, I found, for instance, that when Crohn's disease causes a flare up of gastrointestinal symptoms, the patient may experience inflammation of the joints (arthritis), inflammation of the whites of the eyes (episcleritis), mouth sores (aphthous stomatitis) and inflamed skin nodules on the arms and legs (erythema nodosum). And when Crohn's disease is not causing a flare up of gastrointestinal symptoms, the patient still may experience inflammation of the spine (ankylosing spondylitis), inflammation of the pelvic joints (sacroiliitis), inflammation inside the eye (uveitis) and inflammation of the bile ducts (primary sclerosing cholangitis).

In other words, a doctor may suspect Crohn's disease in a person with seemingly dissociated complaints of abdominal pain, achy joints, inflamed eyes and skin. No lab test specifically identifies Crohn's but blood tests may show anemia and indications of inflammation. Various sources including Merck's Manual claim Crohn's disease can almost always be detected on x-ray once barium is swallowed. Left untreated, some people die of cancer of the digestive tract, which may develop in long-standing Crohn's.

Given this, I was surprised at how many of the doctors I saw tuned out by the time I got to the third symptom. A friend of mine told me that if you mention more than two symptoms to doctors, they label you as a hypochondriac and don't take you seriously. Most of the doctors I saw wanted to explore one symptom at a time as if there was a one on one causal relationship between one symptom and one illness, such as my head hurts hence I must have a headache. At least that's how they made it seem to me. I'd like to believe doctors are more sophisticated than that.

Perhaps my perception is a reaction to my frustration at their reluctance to attempt to tie all the pieces together and come up with a diagnosis. My own efforts at diagnosis by scouring all things medical proved to me how difficult a task diagnosis actually is. For one thing, there are many seemingly similar conditions that can impact correct diagnosis. It seems that many diseases share the same symptoms. Take arthritis, for example.

There are over 100 different types of arthritis affecting over 20 million people in the United States. Many types share the same arthritic symptoms whether it is ankylosing spondylitis, osteoarthritis or arthritis associated with Crohn’s disease and ulcerative colitis. Each of these arthritic conditions can cause inflammation in the spine and other joints, eyes, skin, mouth and various organs. The confounding question is whether the arthritis is being caused by the immune system’s reacting to the presence of infection in another area of the body or whether a loss of cartilage, the “cushion” between the bones of the joints, is the source of inflammation.

Ankylosing spondylitis (AS) and rheumatoid arthritis (RA) are both destructive, inflammatory diseases. Unlike AS, RA is an autoimmune disorder in which the immune system improperly attacks the soft tissue that lines the joints and the connective tissue in various other parts of the body including blood vessels and the lungs. The enzyme-producing inflammation digests adjacent tissue which produces scar tissue and causes bones to fuse together. Those with RA commonly experience a crinkling cellophane sensation in the affected tissue.

The onset of RA is associated with stress, poor nutrition and bacterial infection. Organisms involved in arthritis caused by bacterial, fungal or viral infection of the joints are typically Streptococci, Staphylococci, Gonococci, Hemophilus or tuberculi bacilli and fungi such as Candida albicans, which travel through the bloodstream to the joint from infection elsewhere in the body. Systemic symptoms of infection are varied and often include fatigue, low-grade fever, morning stiffness, body aches, chills, tender, painful swelling of two or more joints commonly in the fingers, ankles, feet, hips and shoulders. All symptoms I have.

I’d been seeing chiropractors for years for arthritis but in the last couple of years, their adjustments no longer relieved painful symptoms. I started looking for another reason for my symptoms keeping in mind that conditions are not necessarily mutually exclusive. I found pseudogout. Pseudogout is a disorder caused by calcium pyrophosphate crystal deposits in the cartilage and joints. Some confuse pseudogout’s symptoms of painful joint inflammation with RA. Pseudogout occurs in those with abnormally high calcium levels caused by some other illness. Those with malabsorption as well as parathyroid abnormalities excrete calcium phosphate and oxalate crystals into the urine. Pseudogout is characterized by these crystals and low uric acid blood levels.

None of the doctors I saw was able to tell me the significance of consistently testing low for serum uric acid. When I’d mention that low serum uric acid could be indicative of Fanconi’s syndrome or Wilson’s disease, they told me those were rare diseases that I needed to discuss with some other specialist.

Fanconi’s syndrome is a kidney malfunction that leads to excessive and frequent urination, excessive thirst and results in an electrolyte imbalance. Normally when the kidneys cleanse the blood, it reabsorbs and returns to the bloodstream the electrolytes and nutrients it needs to keep water, salt and acidity in balance. In Fanconi’s syndrome, this reabsorption is defective and leads to dehydration and constipation.

Dehydration precipitates the formation of kidney stones from substances that do not dissolve completely (ie: calcium oxalate, uric acid). Crystals slowly build up into kidney stones. Fanconi’s can be caused by environmental assaults, including exposure to heavy metals, or by a variety of genetic defects, including those in Wilson’s disease.

Wilson’s disease is a genetic disorder in which copper accumulates in tissues, then manifests as neuropsychiatric symptoms and liver disease. Liver disease may present as tiredness, increased bleeding tendency or confusion (due to hepatic encephalopathy) and portal hypertension. In portal hypertension, the pressure on the portal vein is markedly increased, leads to esophageal varices (blood vessels in the esophagus) that may bleed in a life-threatening fashion, splenomegaly (enlargement of the spleen) and ascites (accumulation of fluid in the abdominal cavity). Some patients are diagnosed once hemolytic anemia (anemia due to the destruction of red blood cells) leads to deranged liver protein metabolism and the accumulation of waste products such as ammonia in the bloodstream.

About half of those with Wilson’s disease are said to have neuropsychiatric problems. Initially, patients exhibit mild cognitive deterioration and clumsiness as well as changes in behavior. Specific neurological symptoms follow, often in the form of parkinsonism (increased rigidity and slowing of routine movements). Psychiatric problems due to Wilson’s disease may include behavioral changes, depression, anxiety and psychosis. Medical conditions linked with Wilson’s disease include:

• renal tubular acidosis, a disorder of bicarbonate handling by the proximal tubules which leads to nephrocalcinosis (calcium accumulation in the kidneys), weakening of bone (due to calcium and phosphate loss) and occasionally aminoaciduria (loss of amino acids needed for protein synthesis).
• cardiomyopathy (weakness of the heart muscle) which leads to fluid accumulation due to decreased pump function and cardiac arrhythmias (episodes of irregular and/or abnormally fast or slow heart beat).
• hypoparathyroidism (failure of the parathyroid glands, leading to low calcium levels), infertility and habitual abortion.

According to Mosby’s Diagnostic and Laboratory Test Reference guide, low serum uric acid may also indicate lead poisoning or be caused by such drugs as estrogen, guaifenesin and corticosteroids among others.

Diagnostic clues recap:

• Candida albicans/candidiasis
• Actinomycotic granules
• Flora imbalance, intestinal bacterial overgrowth
• Hypoxemia (lack of oxygen) affecting brain/central nervous system
• Arterial plaque buildup, cardiovascular disease
• Pernicious and hemolytic anemia (B12 and RBC deficiency)
• Possible pituitary malfunction (regulates kidney function)
• Dehydration and inflammation (Fanconi's syndrome)
• Calcium buildup in soft tissues and kidneys
• Hypothyroidism (regulates calcium levels)
• Skin eruptions
• HHV-6 and EBV
• Colon cancer marker present
• Autoimmune disease
• No allergies, minimal food sensitivity
• Spirochete (Lyme, Babesia, other)
• Hormonal imbalance
• Wilson's disease
• Arthritis, pseudogout

The Story #8: Search For A New PCP

2008-11-04T06:09:00.011Z

January 31, 2005. Given a long history of gastrointestinal problems and constant lower left abdominal pain , I made an appointment with Dr. Carol Schuffler, a gastroenterologist recommended by Dr. Joyce Hair, my gynecologist. Dr. Schuffler had a small office in an older office building primarily populated with medical offices. I recall how warm it was sitting across the desk from her in her office from the sunlight streaming through the room’s tall, slender windows. We were going over all the consent forms I had to sign to schedule a colonoscopy.

That meeting followed a brief exam that took place in a patient exam room. Dr. Schuffler suggested using Miralax for my constipation, ordered a colonoscopy and post-procedure CT scan. The CT scan, she said, would show whether she had successfully removed all of the colon polyps found, if there were any. I was apprehensive about getting a colonoscopy as I’d never had one before. Despite trite reassurances about how safe the procedure is, there’s something disconcerting about having to sign all those papers acknowledging the procedure’s possible complications like intestinal perforation, particularly since I had a history of intestinal bleeding. So contrary to Dr. Schuffler’s instructions, I scheduled the CT scan before scheduling the colonoscopy.

A CT scan of my pelvis and abdomen taken on March 11, 2005 at Fairfax Radiology found a stool-filled colon with decompression of the descending colon as well as questionable wall thickening and enhancement of the sigmoid colon. The report states that the cecum, the point at which the large intestine joins the small intestine, is redundant and extends into the deep right pelvis. To me, redundant means that the cecum is twice as large as it should be possibly due to a problem with the appendix, which projects from the cecum. The fact that it was extending into territory typically occupied by other organs in my right pelvis, to me, seemed to indicate the possibility that it was negatively impacting these other organs. Could this mean that my appendix was infected and inflamed? In 1977 while in graduate school, I was hospitalized for an infection of the right kidney that doctors initially thought might be an infected appendix.

The fact that my left sided descending colon is compressed could explain my difficulty having bowel movements, my constant left sided abdominal pain and signify a problem. Compression seemed to indicate that something was pushing on that part of the colon that shouldn’t be. The descending colon is connected to the sigmoid colon, which the report states, was inflamed, swollen and thickened which could indicate severe narrowing of the area or tube used to eliminate bodily waste. This bottleneck could explain why there was a large amount of stool throughout the colon. There was also the question of what was causing the sigmoid colon to swell to such an extent.

Dr. Elise Berman, the radiologist, recommended further evaluation through colonoscopy to exclude an underlying obstructing left colonic mass, which she and the prescribing gastroenterologist, Dr. Carol Schuffler, suspected might be colon cancer. Dr. Schuffler had her assistant call me on March 14th after she received a phone call from Dr. Berman who was said to have been alarmed at the finding.

I did not understand the significance of all the medical terminology on the abdominal CT scan report. I wanted clarification. I tried to speak with Dr. Berman directly but found out through a phone conversation with the radiology firm’s office manager, Linda Foster, that radiologists only speak with the prescribing doctor about a patient’s films. Her statement was later corroborated by Steve Richardson, the office manager for the Association of Alexandria Radiologists, who told me that, at some point, the radiologists got together and agreed to speak only with the prescribing doctors so as not to chance saying anything to the patient that would be different from what the doctor said. I found that labs follow this same protocol regarding discussing blood and urine test results.

I called Dr. Schuffler’s office and left a message with her assistant to have Dr. Schuffler please call me regarding questions I had about the CT scan report and the colonoscopy. She never called me back. Instead she had her assistant write a letter to me expressing her concern that the mass on the CT scan may be cancerous and that it was imperative that I schedule my colonoscopy promptly. The letter was written as if Dr. Schuffler had spoken directly to me about the report, but the only time I’ve ever spoken with Dr. Schuffler was during our one and only office visit on January 31, 2005. I scheduled the colonoscopy for the first available appointment, the Monday after Easter.

The Thursday before my Easter Monday appointment I received a call from Dr. Schuffler’s assistant, Angela, who asked me if the appointment time could be changed since the scheduled Monday appointment time was not convenient for the doctor. Having never undergone a colonoscopy before, I was anxious about the procedure, particularly the chance of intestinal perforation. I knew Dr. Schuffler was not a surgeon, and she never answered my question about what happens in the event of intestinal bleeding. Does she call out, “Is there a surgeon in the house?” or does she just try to cauterize the wound herself? How does this work? I didn’t know, and no one would tell me. It took a long time for me to realize that doctors don’t address questions they can’t answer to save face. Dr. Schuffler like many other doctors didn’t know what the CT scan findings meant. It’s likely that the radiologist didn’t know either. I realized this much later reviewing radiologists’ studies of CT scan findings typical of certain diseases and conditions.

After the assistant’s call, I envisioned a doctor irritated because she wanted to be elsewhere rushing through the procedure and raising the risk of complication. Plus I was sick so there was the added risk of spreading infection if something went wrong. Hence I canceled and this, according to Angela, infuriated Dr. Schuffler. She sent me a letter terminating me as her patient along with a bill with a cancellation fee of $125.

God works in mysterious ways. After reflecting on the situation, it dawned on me that there might have been a problem with Cigna, my medical insurance carrier, covering the cost of the procedure since my PCP hadn’t referred me to Dr. Schuffler or any gastroenterologist for that matter. I started looking for a new PCP.

Posted on Cigna’s website was a list of physicians allegedly taking on new patients. It was obsolete. When I called the more seasoned physicians listed, I was told they were no longer taking on new patients. For the most part, I found that only the newer, junior doctors were accepting new patients. On April 7, 2005, I called Cigna regarding the difficulty I was having finding an in-network primary care doctor accepting new patients in spite of indicating such in the current online directory. I found that the first available new patient appointment for the few seasoned doctors actually accepting new patients was months away. I called GW Faculty Physicians and was told by the appointment taker and his supervisor that the best way to get an appointment with one of the 220 internists at George Washington Hospital Center was to schedule a new patient physical with a resident, who would relay his findings to the supervising physician. Otherwise, I was told, there would be a six months wait before I could schedule a new patient physical.

One Cigna rep actually called a family practice in Arlington with multiple doctors listed and, after identifying herself as a representative from Cigna, made an appointment for me just to prove how simple getting an appointment with a primary care doctor through Cigna was. When I asked the name of the doctor, she said the appointment wasn’t with a specific doctor; it was with whichever doctor was available on such and such date and time. Based on how complicated my symptoms had become over time as my illness progressed, I knew I needed an experienced doctor.

Concerned the appointment may have been with a doctor not acceptable to me, I asked if I could change primary care physicians again if I wasn’t satisfied. She said “it depends” in a tone that suggested not exactly as Cigna has restrictions and rules pertaining to switching doctors too quickly or too often.

My attempts to lodge complaints with Cigna about my current PCP’s failure to diagnose and treat or even refer me to appropriate specialists were deaf eared. Contrary to Cigna’s “Patient Bill of Rights,” customer care reps and their supervisors refused to log complaints or even provide an address to which written complaints could be mailed. It seemed the reps felt that not handling a caller’s concerns themselves reflected poorly upon them. It mattered not that they were often unable to satisfactorily deal with the issue at hand. Not one customer care representative was aware of the existence of Cigna’s highly promoted “Patient Bill of Rights.” A faxed complaint was returned to me by mail months after it was faxed. The form cover letter indicated by checked box that my complaint was being returned because I did not include my social security number. One rep told me that Cigna’s computer system did not even have an area for logging complaints.

Contrast this experience with Cigna’s claims that members have the right to:

“Be Heard. Our complaint-handling process is designed to hear and act on your complaint or concern about CIGNA HealthCare and/or the quality of care you receive, provide a courteous prompt response, and to guide you through our grievance process if you do not agree with our decision.”

Cigna’s policy instructs its members to voice questions about coverage and services or any other problem first with Member Services at the toll-free number on the Cigna ID card. If Member Services cannot resolve the member’s concerns, Cigna instructs the member to ask the care rep for more information about how to have concerns addressed. Good luck.

The customer care reps’ inability to assist often resulted in my having to call Cigna several times about the same issue before it was resolved. Differences between insurance company billing procedures and provider billing practices necessitated calls to Cigna’s Member Services nearly every time I saw a provider. Examples of the things problematic for Cigna Member Services included:

1) getting approval for a Small Bowel Follow Thru series of x-rays because the procedure wasn’t on any Cigna lists;
2) getting the Association of Alexandria Radiologists (AAR) to stop billing me a co-pay fee for a fabricated radiologist office visit that was alleged to have occurred when I got a CT scan. (I would have gladly paid the fee had a radiologist agreed to speak with me. However, radiologists refuse to discuss their reports directly with patients. Makes you wonder how much money AAR scammed from insurance companies for such billings. AAR contended the fee was warranted because Cigna paid its portion of the office visit fee even though no such visit took place and my contract with Cigna disallows billing co-pays for CT scans.)
3) getting Cigna’s third party prescription provider, Tel-Drug, to figure out my prescription for Amphotericin B oral capsules was handled by its compounding pharmacy in the midwest and not its specialty pharmacy;
4) getting Cigna to pay my chiropractor before he finally terminated his relationship with the HMO.

The list goes on, but I’m sure I’m not the only one who has had to waste so much time on hold before speaking with clueless care reps.

I never understood the logic behind hiring low paid untrained entry level personnel over higher paid experienced workers unless the objective is not to provide service. Measured on a per call resolution basis, it seems you end up paying both the same amount because it takes three calls to the lower paid worker to resolve what the experienced worker handles in one call. This doesn’t even take into consideration lost income from disgruntled patients who switch insurance carriers over the frustration of having to deal with unhelpful care reps. I guess Cigna banks on the premise that discouraging member calls results in fewer benefit payments.

CR, a former Cigna employee, remarked in her comments on Wendell Potter’s June 24th, 2009 blog post about the crude standards Cigna set forth for its customer care reps. “Our Customer Service Representatives (CSRs) got bonuses (about 20% of their pay) for having better performance statistics in the current year as compared to the prior year. They were expected to deny more people the benefits our subscribers expected year over year…to have that same program year after year inevitably causes our CSRs to deny legitimate claims. When I raised this question, it was suggested that I needed to pay more attention to being a ‘team player.’ After only eight months, I left Cigna.” Potter, a former Cigna executive now with The Center for Media and Democracy, has spoken out on numerous occasions about Cigna’s raw dealings.

After sifting through the potential PCPs Cigna availed to me without much luck, I decided to go with Manny Silis, the doctor who treated my ex-husband. Manny Silis and his brother, George, run a family practice in Franconia, Virginia. My ex first met Dr. George Silis during one of his hospitalizations at Alexandria Hospital. My ex liked Manny because he sometimes would call a referred specialist’s office on the patient’s behalf to get a same day or next day appointment for the patient.

At our first meeting April 28, 2005, Dr. Silis ordered a new CT scan of the pelvis and abdomen, a sonogram and chest x-ray. He also gave me referrals to a half dozen specialists, and arranged for me to see Dr. Ronald Barkin, a gastroenterologist, the next day.

In the meantime, I was still seeing some doctors, such as Dr. Mitchell, who did not accept Cigna insurance. For several months in 2005, I was having intravenous vitamin-enriched saline treatments, which had been prescribed by Dr. Mitchell, administered in his offices in Washington, DC. I was surprised to find that the treatments only energized me somewhat for a day or two. My guess was that a lack of enzymes or some deficiency was preventing nutrients from being properly absorbed. Intravenous therapy included 1cc of each B12, B5, B6 and B9, 5cc of Lidocaine, 6cc Calcium glucorate, 3cc MTE-5 (a combination of trace minerals zinc, copper, manganese, chromium and selenium), 3cc magnesium sulfate, 15 gm C, and 150 cc sodium chloride. I once asked Dr. Silis if a blood test taken after a nutrient IV treatment was an accurate measurement of the patient’s health. He said the answer was complicated.

I suspect the IV treatments did more good than harm. It just seemed that each improvement in my condition was offset by a new irregularity resulting from the improvement. A second peripheral live microscopic blood analysis done in March 2005 showed that the saline treatments had flushed pathogens from my red blood cells, which were again oval shaped. The analysis also showed my white blood cells now gorged with these pathogens and sluggish. Other changes indicated the beginnings of cancer as cells went overboard filling in gaps from cellular oxidation and degeneration.

The setting for the IV treatments, I imagine, was much like that for patients receiving chemotherapy. Several Lazy Boy-type recliners lined the walls of a sizable room with end tables stacked with periodicals. Strategically placed specialized hooks for the saline bags hung from the ceiling. Patients being infused relaxed in the recliners with the “drip” arm taped straight to a board to prevent movement that would dislodge the IV catheter or butterfly needle. Patients being tested for allergies for their immunotherapy solutions shared the room.

The atmosphere was relaxing. Most patients were cordial, and many spoke freely about their experience with illness, doctors and treatments. Depending upon the speed of the drip, how cooperative your veins were that day, and how busy the office was, treatments could last from two to four hours — ample time for discourse.

Their stories made me feel better about my own plight. They reassured me that I wasn’t crazy and that mainstream medicine failed many patients, not just me. Their stories were heart wrenching — some hopeful, some not.

One patient from Manassas, Virginia recounted how neurological damage from latent infection caused by deer tick bites brought on an episode of panic and paranoia that landed her in Sibley Hospital. She’d imagined the FBI was chasing her and that she was a secret agent.

She and a friend laughed as they recalled the phone calls she received from co-workers just before she was discharged. “You’re not going to freak out on us now when you come back to work, are you?” co-workers asked. She assured me the comment was said in jest, and that however real her paranoia felt at the time, the episode was fleeting and hadn’t resurfaced.

The information the patients and doctor’s assistants shared was helpful to me and eye-opening. I was amazed to hear that some health care professionals don’t know that catgut sutures should be handled in the same manner as needles to keep them sterile. Unused open packages should be discarded and not re-sterilized for later use.

(Catgut sutures are made from fibers in the walls of the intestines of such animals as sheep, cattle and pigs. Current controversy looms about whether to continue using catgut in medical settings over synthetic threads, which are less prone to infection. In Europe and Japan, gut sutures are banned due to concerns over bovine spongiform encephalopathy (mad-cow disease), even though the herds from which gut is harvested are certified BSE-free.)

Another time, a doctor’s aide told me she occasionally went to an atlas orthogonist, which is a specialized chiropractor who uses specific equipment to align the atlas (the first bone in the neck through which the spinal cord passes.) Out of alignment, the atlas negatively impacts the nerve impulses through the spinal cord and restricts the flow of blood to the head and the brain. The theory behind atlas orthogonal chiropractic is that once the atlas is aligned, the rest of the vertebrae self adjust as in a chain reaction like dominoes. I made an appointment with Dr. Leslie Windman in Greenbelt, Maryland for April 11, 2005.

X-rays taken during that office visit showed my atlas had shifted to the right thereby closing off a portion of the spinal cord opening. My first thought upon hearing this: Could this impingement upon an artery be cutting off the blood supply to the brain? Was this related to my suspicions of having hypoxic-ischemic encephalitis?

Atlas adjustment brought on some sinus drainage, but the chain reaction that was to occur with the discs of my spine encountered roadblocks at a spot between the shoulder blades and again at the lower back. Movement became difficult. My guess is that because my illness had gone on for such a long time undiagnosed, inflammation was preventing these discs from adjusting on their own. Manual chiropractic adjustments provided instantaneous relief, but didn’t “hold” beyond a day or two — a symptom of heavy metal toxicity, I later learned.

X-rays of my cervical spine taken in the spring of 2005 were positive for spinal cord compression syndrome. (The discs in my neck were fusing together.) PA and lateral chest x-rays showed anterior degenerative spurring at multiple levels within the thoracic spine. Impressions also showed cervicobrachial syndrome, lumbago and subluxation of C1 and T4. Chiropractor Raymond Solano, whom I started seeing in spring 2005, noted that discs C3, T3-T5, T10 and L4-L5 were the root of my problems.

Osteopathic medicine recognizes a correlation between the discs in the vertebral column and the health of the corresponding organs of the body. Treatment is based on the recognition that an out of alignment vertebra continually stimulate the connecting nerves which leads to functional impairment of the corresponding organ. Applying this correlation to my misaligned discs indicated malfunctions in the following organs and related systems: C-3 peripheral cranial and facial vessels, T3-5 the bronchi, heart, gallbladder, spleen and large intestine, T10 the liver, L-4-L5 the kidney, bladder and female organs. While not recognized officially as a diagnostic tool, the correlation may provide yet another clue in the investigative process we call diagnosis.

The Story #7: Tooth Root Connection II

2008-11-04T05:29:00.002Z

December 20, 2004 found me back at the endodontist's with an inflamed lower right molar, #31. I first called Dr. Park's office to see if I could get an appointment to just have the tooth extracted. The office staff told me that the first available emergency appointment was two to three weeks out, and I would only be seen with a referral from an endodontist requesting the extraction. Persistence on my part to find an oral surgeon who would see me without a referral only led to more administrative staff antagonism. I finally managed to get an emergency appointment with Dr. Dollard, but only if I drove all the way to Manassas to his private practice with Dr. Michael Piccinino.

I wasn't keen on the idea of getting another root canal given the risk for bone and other infection as a result of the procedure. But when you're in pain, sometimes you find that you'll do most anything for relief. Dr. Dollard wouldn't give me a referral for an extraction. He, like other endodontists, feel it's vital to do whatever it takes to save a tooth.

The impacted molar had four canals that needed to be cleaned and filled. It seemed like one of the canals was a bottomless pit. Dr. Dollard kept cleaning it with an instrument that looked like a miniature pipe cleaner, but each time he went back in, there was a little crunch sound revealing a deeper infection. I guess once he got to a certain depth, he figured that was deep enough, and sealed the canal. But I had my doubts. Even with all the Novocain, I could feel a definitive bottoming out when his cleaning instrument reached the root tip on the other three canals -- like when you're digging and you hit rock. This last canal, however, felt more like if you pushed a little harder on the snake you were using to clear the drain, you could probably get it to push through yet another clog.

My perception proved accurate. Two days after a second appointment with Dr. Dollard to fill the root canal, I felt molar #31crunch further into my gum. The pressure on the nerve was causing me considerable pain. I called and was told to go to Dollard's Manassas office the next day. On January 6, 2005, I was back in Dollard's office with Dr. Michael Piccinino because Dr. Dollard was on vacation. I tried to convey to Dr. Piccinino that I was very ill with systemic infection and inflammation that was probably affecting my gum tissue, and what I really wanted was a referral to have the tooth extracted. I even brought him a copy of test results documenting the infection and inflammation. Dr. Piccinino wasn't hearing any of it. He insisted that my problem was just a malocclusion, and all I needed was a bite adjustment. He never even glanced at the medical test paperwork I handed him. Instead, he placed the paperwork on the counter, and then proceeded to numb the area of the root canalled tooth and began smoothing the tooth surface with his drill.

The next day, still in pain, I was able to convince a staff assistant at The Reston Dental Arts Center to get me an appointment with an oral surgeon to have the tooth extracted. On January 10, 2005, Dr. Daniel Theberge extracted the December 2004 root canalled lower right molar and performed an alveoloplasty, removing the bony protrusion below the site of the June 2004 molar extractions. Dr. Theberge said he couldn't understand why dentists insist on sending their patients to endodontists first because in very little time root canals make teeth brittle and difficult to extract. Extractions take longer because root canalled teeth break up into little pieces during the extraction process.

Dr. Theberge took one look at the panoramic x-ray I brought from my dentist's office and said it was obvious that the root canalled tooth was abscessed and sitting in a pool of infection. He said he didn't understand why the dentist didn't detect this outright. When I later repeated the oral surgeon's comment to my new dentist, Dr. Thomas Eichler, one of Washingtonian magazine's top area dentists, Dr. Eichler said that wasn't a fair comment for the oral surgeon to make. He said detecting infection may be clear for someone who sees this type of x-ray regularly, but general dentists don't.

Dr. Mark Breiner in Whole-Body Dentistry, Dr. George Meinig in Root Canal Cover-Up and a number of other medical professionals have written about the connection of dental caries to whole-body or systemic illness. They claim root canals and cavitations are nearly as lethal as heavy metal toxicity. In root canals, the pulpal tissue in the root of the tooth is removed and the hollow core is then sterilized and sealed. Conventional wisdom assumed that completely sterilizing and sealing the canal quarantined the area from further decay or infection. This theory, however, completely ignores the porous property of teeth.

Under the enamel and cementum is dentin, which makes up the bulk of the solid, impenetrable appearing tooth. Dentin actually consists of millions of microscopic tubules, which transport nutrients from the canal out to the enamel. After a root canal, the canal is partially sealed so the area no longer benefits from the cleansing and oxygenating effect of the blood supply flowing through the tooth. The microscopic bacteria left in the dentinal tubules gets cut off from the oxygen and blood supply, changes from aerobic to anaerobic and begins to give off toxins.

Contrary to popular belief, with time the root filling shrinks minutely, microscopically -- enough to let the bacteria present in the bloodstream enter the tooth. Circulating antibiotics can't reach the bacteria in the dentinal tubules. Hence, the bacteria can migrate out into surrounding tissue where the bloodstream transports the pathogens to any organ or gland or tissue. The new colony will be the next focus of infection in a body plagued by recurrent or chronic infections.

A strong immune system can wall off or quarantine the canal area affected by these toxins. This immune response shows up on X-ray as a more radiolucent area indicating an abscess. A not so strong immune system cannot quarantine these bacteria, and relatively harmless bacteria common to the mouth become pathogenic (capable of producing disease) and toxic.

These toxins circulate throughout the body triggering activity by the immune system. This host response can vary from just dragging around and feeling less energetic, to overt illness of almost any kind. Because the body is under constant challenge by the infective agent or its toxins or both, it will be more vulnerable to whatever "bugs" are going around.

The most frequent repercussions from root canal therapy are heart and circulatory diseases. The next most common diseases are those of the joints, arthritis and rheumatism. In third place - but close to second - are diseases of the brain and nervous system. After that, any disease you can name might come from root filled teeth.

Chronic, low-level heavy metal poisoning is present in patients with chronic degenerative diseases, chronic fatigue, fibromyalgia, allergies, hypertension, and autoimmune disease. Vapor from fillings can travel through the upper nasal cavity directly into the brain, including the hypothalamus region which regulates the heart rate, respiration and blood pressure. It can also travel into the lungs where it is absorbed into the bloodstream and carried to tissues throughout the body- especially the kidneys where it accumulates rapidly.

Symptoms associated with low-level mercury poisoning are commonly attributed to aging and include inexplicable fatigue, loss of memory, inability to concentrate, moodiness, anxiety, lack of confidence and severe depression.
Symptoms from mercury toxicity fall into several broad categories further broken down into body systems.

• Gastrointestinal effects include abdominal cramps, constipation or diarrhea and other gastrointestinal problems including colitis.
• Systemic effects include cardiovascular disturbances such as irregular heartbeat (tachycardia, bradycardia), feeble and irregular pulse, chest pain or pressure, blood pressure changes.
• Neurological disturbances include chronic headaches, dizziness, ringing in the ears.
• Respiratory effects include persistent cough, emphysema, shallow and irregular respiration.
• Immunological effects include allergies, asthma, rhinitis, sinusitis, lymphadenopathy, especially cervical.
• Endocrine effects include subnormal temperature, cold, clammy skin especially the hands and feet, excessive perspiration.
• Oral cavity disorders include metallic taste, foul breath, excessive salivation, tissue pigmentation, burning sensation in mouth or throat, ulceration of gingiva, palate, tongue, leukoplakia (white patches), loose teeth and bone loss.
• Psychological disorders include irritability, nervousness, shyness, attention deficit, anxiety, insomnia, depression, fits of anger, lack of self control, decline of intellect, loss of self confidence, memory loss.
• Other effects include anemia, joint pain, edema, anorexia, hypoxia (lack of oxygen), dim vision, muscle weakness.

Clues to heavy metal toxicity include:

• Candidiasis, an overgrowth of Candida albicans, a normally occurring gastrointestinal fungus.
• Hypothyroidism - basal temperature does not increase with thyroid medication.
• Chiropractic adjustments in the neck and other vertebrae don't "hold". (Root canals or a malocclusion can also cause vertebral weakness.)

Often accurate medical diagnosis cannot be reached, or treatment will be ineffective, until the symptoms caused by metals and other problems in the mouth are cleared up. The five metals in amalgam fillings are mercury, copper, tin, zinc and silver. When placed in saliva, these metals generate battery-like electrical currents which interfere with proper cell function. These electrical currents can cause such seemingly unrelated symptoms as leg or gastric pain through their impact on the nervous system.