The Story #3: The Medical Record Paperweight

Dec. 12 & 18, 2003. Office visits with infectious diseases specialist, Dr. David Yoho.

Serum protein electrophoresis, immunology and HIV testing were all negative. Dr Yoho prescribed a 10-day course of doxycycline as a precautionary measure just the same. He confirmed I was outwardly exhibiting the symptoms of fungal infection, but said there was little he could do. He told me that I would get better or worse on my own as he hadn’t had much luck treating patients with fungal infection medications like amphotericin B.

He told me one of his patients was living in The Residences at The Ritz-Carlton in Washington, DC’s Georgetown when rampant growth of black mold from in-wall plumbing leaks was discovered. She was one of dozens of owners whose health was devastated by the effects of fungal infection. He said he treated her with intravenous amphotericin B, which is used to treat systemic fungal infections. He said he witnessed the serious acute reaction of fever, shaking chills, nausea and vomiting and other side effects which some patients encounter after an infusion of Amp B. He described the patient’s experience as more devastating than going through chemotherapy and vowed never again.

Clearly, Dr. Yoho’s experience treating the aforementioned patient played a role in his decision not to clinically diagnose and treat me. In fact, numerous physicians have written about various neuropsychological research studies that show how doctors’ judgment is swayed unduly by desire, emotion, other patient cases and even the time of the day. Among them are Atul Gawande, a surgical resident who received his M.D. from Harvard Medical School and an M.P.H. from the Harvard School of Public Health; Jerome Groopman, M.D., author of How Doctors Think, and David Eddy, a physician and expert on clinical decision making. In The Journal of the American Medical Association Eddy wrote:

“The plain fact is that many decisions made by physicians appear
to be arbitrary — highly variable, with no obvious explanation.
The very disturbing implication is that this arbitrariness represents,
for at least some patients, suboptimal or even harmful care.”

Dr. Yoho seemed to be unaware of virtually nontoxic oral preparations of amphotericin B used to treat oral thrush or the 2% nasal spray available through compounding pharmacies that are used to treat fungal sinus infections. Even more disturbing to me was Dr. Ferrer’s assertion a few months after my visits to Dr. Yoho that she was under the impression that Dr. Yoho was treating me. According to Cigna Healthcare guidelines, PCPs cannot delegate responsibility for overseeing treatment of their patients to referred specialists without Cigna’s knowledge and consent, which consent shall only be given in special cases.

Christmastime 2003. Work was demanding with pressure to finalize as many leases as possible prior to year end. Work and the stress of these non-productive doctor visits was taking a toll on my health. I missed my company’s annual Christmas party and other Christmas lunches with company clients due to poor health. This did not go over well with my supervisors. The day before Christmas, I received a 25 page disciplinary write up to which I needed to respond within 10 days, according to company rules. This put me in the precarious position of having to choose between working on responding to the write-up or closing the outstanding leases before year end to qualify for the year end bonus, a major portion of my total compensation. I chose to concentrate on closing the transactions, and ended the year 100% leased. The Eastern Division, of which I was a part, was the only division of all in this publicly traded national company that achieved the company’s leasing goals for 2003. No easy task given market conditions at the time. I did not complete the rebuttal of my supervisor’s lengthy contentions on time and was not granted a requested extension. I was terminated effective January 31, 2004.

Getting my company health insurance transferred to Cobra coverage seemed to take longer than permitted by law. It took EBAM, the company’s third party Cobra coverage coordinator, from 2/1/04 until 5/13/04 to send me proof of medical insurance coverage. When I complained to my company HR department about how long it was taking, I was advised to obtain whatever healthcare I needed and pay out of pocket. HR reps asserted that my insurance carrier would reimburse me fully for any covered medical expenditures I paid out of pocket while my Cobra paperwork was being processed. However, without proof of coverage, providers were insistent upon charging the fees for what they called “cash payers” and not the negotiated discount insurance rates. In some instances, I found providers charging cash payers 150% of their regular fees to make up for the discounts they had to give their insured patients. There was no way I would have been made whole for my healthcare expenditures had I taken my company’s HR advice.

By May 2004, my sinuses felt like they were going to explode. I decided to see a doctor referred by one of my former leasing clients, who said her brother had seen this doctor for a fungal upper respiratory infection. I thought it might be helpful to provide any new doctors with my medical records, so on May 4, 2004, I faxed my request for a copy of my medical records to Dr. Ferrer’s office. Virginia law allows physicians a certain number of days to comply with authorized requests for copies of medical records.

May 11, 2004. Sonia called from Dr. Ferrer’s office. Sonia was an office assistant. She said my file had been sitting on Dr. Ferrer’s desk since the 4th of May. She said Dr. Ferrer said she would only release information to another doctor. She told Sonia to see what Dr. Ignacio had to say about releasing copies of my medical records to me. Sonia said Dr. Ignacio said it was okay except she needed a special release for my “psychiatric records.” I asked her what she was talking about. Drs. Ferrer and Ignacio had prescribed Prozac, an antidepressant, for my complaints of extreme fatigue, and it seemed to be helping. But there was no psychiatric exam or cognitive therapy. In fact, I later learned from examining my medical records that I had tested positive for Epstein Barr Virus (which is implicated as a source for chronic fatigue immune deficiency syndrome or infectious mononucleosis), for low thyroid, for hemolytic anemia — all known causes of fatigue. Drs. Ferrer and Ignacio never even informed me I had tested positive for Epstein Barr, and apparently didn’t think EBV, hypothyroidism or anemia warranted further investigation or treatment despite medical warnings to the contrary.

I also found in my medical records that they didn’t view positive findings of bacilli infection and inflammation worthy of diagnosis or treatment either. Had repeated solicitations from pharmaceutical reps superceded their ability or desire to think logically? Had other emotions played into their decision to ignore the facts and simply prescribe an anti-depressant whose unmentioned side effects would likely add to the growing list of ailments plaguing me?

From my readings on evidence-based medicine, I found doctors have an obligation to perform elaborate testing prior to prescribing anti-depressants. The first step involves ruling out some physical illness or injury before psychiatric testing by a qualified psychologist or psychiatrist. A brain injury, infection, thyroid problems, low blood sugar and many other things can induce erratic behavior, anxiety or depression. Medical experts say the medical exam would include a complete medical history and physical examination, with special attention to neurological status, blood testing, and perhaps specialized brain testing such as an electroencephalogram (EEG) or an MRI or CT brain scan. If these examinations were normal, the psychiatrist would proceed with his evaluation, which consists of various standardized tests.

First year medical students are taught to look for horses not zebras. When you don’t find any horses, the next inclination should be to consider zebras (rare diseases) before jumping to hypochondria. From what I found, most internists don’t possess the knowledge about rare diseases to make an educated determination. This brings up the issue about getting proper medical care. How many patients are simply being prescribed anti-depressants with no empirical data supporting such diagnosis when the real malady is based in an existing physical impairment, such as undiagnosed infection?

Are some rare diseases simply rare because doctors are no longer diagnosing them rather than because patients don’t have them?

On May 24, 2004 I called Sonia to check on the status of my request for my medical records. Sonia said Dr. Ferrer was using the file as a paperweight and that she could not copy the file until Dr. Ferrer had reviewed it — the inference being that Dr. Ferrer needed to go through the file to remove information she deemed inappropriate to copy. At first I thought maybe she couldn’t give me copies of the specialists’ reports, and I’d have to retrieve those directly from the specialists. What was in my medical record that she didn’t want me to see?

On May 27, 2004 Sonia called, and I picked up a copy of my medical records from Dr. Ferrer’s office. Specialists’ reports were included, and there weren’t any “psychiatric records,” whatever that meant. Had she confused me with another patient, I thought? To this day, the mystery remains unsolved. However, I noticed that a rather detailed report from my chiropractor, Dr. Anthony Platas, dated October 26, 1995 that was sent to Dr. Ferrer in order to get the referral required for medical insurance coverage was missing. In addition to notating various vertebral subluxations, the paragraph titled “Radiographic Examination” contained the following:

“Also noted and discussed with patient is a fairly large bubbly radiolucent artifact located in the pelvic cavity that has been consistent in all the radiographs taken since 1991. Referred her to her internist for further evaluation.”

I don’t ever recall anyone ever discussing this with me. Perhaps the report was forwarded to the insurer without assistants having made a copy for my files. In any event, it certainly appeared that that doctors’ reports and test results were simply being filed and forgotten without due consideration.

Somehow I’d gotten the mistaken notion that doctors wanted to see a patient’s medical records. I was sure I’d read that doctors complained that patients don’t provide the medical information and paperwork they needed to make a proper diagnosis. The reality, I found, is that doctors don’t have time to wade through the mass of medical data that one accumulates over decades. I found that what doctors really want is a single recent test result backing a diagnosis already established by another physician.

On May 13, 2004, I consulted Dr. Michael Abidin, an otolaryngologist, in Alexandria, Virginia. Dr. Abidin has a reputation among patients as being caring but often unable to help patients who see him. This gives rise to the notion that some patients’ maladies that manifest as upper respiratory problems are actually based in illness dealing with other body systems.

At my first visit, he prescribed Nystatin nasal irrigation and Atropine for what appeared to him to be sinusitis.

May 24, 2004. At my second visit, Dr. Abidin prescribed Augmentin and Allerx. He suspected some of my symptoms were the result of Epstein Barr Virus, for which (I discovered in reviewing my medical records) I had tested positive years ago.

June 8, 2004. Examination of the nasal mucosa, septum and turbinates through nasal endoscopy revealed only mild congestion suggestive of chronic fungal sinusitis. Dr. Abidin’s suggested protocol included nasal irrigation twice daily with a saline solution containing Nystatin suspension, lactobacillus probiotic therapy, immunotherapy, and adherence to a mold elimination diet. He completed a blood draw at my request to test for specific species of fungus. Tests showed a weak positive result for Aspergillus antigen.

July 2, 2004. Dr. Abidin prescribed Sporanox 100 mg and Singular 10g. He seemed certain that my symptoms were an allergic reaction to some external stimuli, but in-office skin testing was negative for various substances. I believed whatever was causing my problems was internal.

August 9, 2004. Symptoms improved somewhat the first month taking Sporanox. On a 1-10 scale with 10 representing optimal health, I went from a 3.5 to a 4. Sinus pressure was relieved by inflammation draining through the nose and eyes. Inflammation continued to drain through my nose and eyes like someone with a bad cold to this day — well after I’d stopped taking Sporanox.

October 27, 2004. The Sporanox stopped working after the first couple of months, which Dr. Abidin said was the same effect some of his other patients experienced on the drug. Perhaps the microbes adapted. Dr. Abidin seemed perplexed that he was not able to alleviate my symptoms. He believed that my ailment was genuine. He told me that I did not present as someone trying to concoct an illness for some self-serving purpose. He spoke of another patient, a lawyer, with similar symptoms who had gone on disability after attempts to cure failed. He mentioned that he used to testify on behalf of patients at disability hearings, but stopped because the fee didn’t cover the time he spent on such cases. Then he handed me the file he had been referring to during my appointment to hand the clerk at checkout. It was another patient’s file.

The incident brought home the notion that doctors try to do what they can for a patient within the first three visits. After that, the patient’s particulars get blurred with that of all the other patients. Doctors start repeating themselves and attributing other patients’ characteristics to you. The untreatable patient becomes a thorn — an unpleasant reminder of human fallibility, and no one likes to fail.

Some doctors blame “the system” when patients are harmed by misdiagnosis. They say their hands are tied by insurance companies who dictate what tests they can order and what medicines they can prescribe. However, in this and other instances, I was paying for the visits out of pocket. In fact, when I asked Dr. Abidin about what appeared to be somewhat higher than typical office visit fees, Dr. Abidin said that his practice charges “cash payers” or those without insurance 150% of the regular charge to make up for the discounted insurance rates. Dr. Abidin said his practice dropped out of my HMO’s plan because Cigna was too restrictive. He elaborated by telling me of one patient’s inability to undergo scheduled surgery due to Cigna’s claim denial. I gave Dr. Abidin written confirmation authorizing him to order tests and medications he felt would be helpful without restriction because, I wrote, I’d rather pay more upfront and return to work sooner than be miserly with a prolonged illness.

~ by doctorblue on November 12, 2008.