Reflections on an Uncommon Illness
Stephen Gislason MD
All of us become ill and sooner or later a major life-threatening illness arrives without warning and everything changes. I have been lucky to have illnesses that either resolved on their own or that I managed by careful adjustments to the food I eat. I developed gluten "allergy" expressed as digestive symptoms and arthritis and general debility when I was 38 years old. I discovered a whole new approach to medical therapeutics that few of my colleagues appreciated. Among my self-management strategies is taking a food holiday when something really bad happens. This is an ancient healing method that has worked well for me over the past 25 years. My experience with food related disease became a new level of truth that I have described in detail in books and on other centers at this website.
In the summer of 2006, I became ill; slowly and progressively. All my self-help strategies failed to rescue me. The illness felt like an infection, but it was unfamiliar and did not resolve on its own. For several weeks, I did not recognize the pattern of illness and was alarmed by its inexorable progression. I have detailed the story of the infection in My Blastomycosis Story. I wanted on this page to reflect on some of the important things I learned.
1. Once again, I learned about the limitations of my knowledge. I knew something about allergy to fungal spores, but almost nothing about airborne fungal infections. I was highly motivated to discover and learn but at least two medical colleagues I consulted were not. The first doctor I consulted after I made the diagnosis was helpful and admitted quite correctly that he knew nothing about the infection. I discovered that in my town both medical clinics had no lab facility and no microscopes. All their lab work was sent out and the MDs dealt only with lab reports and prescription pads. None of the doctors had the curiosity and tools that are required by scientists. I have always had the microscope that I carried with me since medical school and used in clinical practice for many years. My lab microscope was more sophisticated and allowed me to take good photomicrographs. For many years I was interested in marine biology and studied plankton samples at every opportunity. I was used to preparing samples so that I could observe living organisms. It was natural for me to collect my own sputum and look for the infecting organism. It took several weeks to correctly identify the yeast form of the fungus that infected me and over time I got to know the little beasts quite well. Three years have elapsed since I made the discovery and the infecting cells are still with me, despite prolonged antifungal therapy. I now better appreciate that there are a growing list of chronic infections that plague humans and resist cure.
I have described elsewhere the problems of technical medicine. MDs tend to live in a world of abstractions; real people become pieces of paper that show words and numbers as data. It is easy for MDs to ignore the real person and deal only with the data. I was taught to treat the patient and not the lab result.
2. I became alarmed that other people who may develop an unusual infection like mine would not be diagnosed and treated properly. Two women physicians I saw as consultants were remarkably callous and dogmatic...not my idea of good doctors. They knew little or nothing about the infection and denied its existence in my area. They renewed my interest in examining medical methods and the failure of infection surveillance infrastructures to respond quickly and appropriately.
3. I tried arrange definitive identification of the fungus that I observed but encountered remarkable resistance. Two female mycologists (not MDs) I consulted were reluctant to consider new evidence and did not help me confirm the identity of my infecting fungus. I had the incorrect idea that experts in the public employ would be curious and eager to help. One stated that blastomycosis has never been reported in BC, therefore it does not occur. The other woman participated in studying another fungal infection that appeared for the first time in BC a few years ago (Cryptococcus gatti). Perhaps there is an unspoken understanding that you can only discover one new fungal infection in British Columbia. In part, the reluctance to help comes from technical limitations - there are no quick and easy tests that provide definitive results. My research was preliminary and should be pursued by a well-equipped mycology research laboratory.
Eventually, I consulted many MDs who denied that I had the infection. After a consultation with an infectious disease specialist who said he couldn't identify what organism was present in my slide culture or photomicrographs, I wrote to him: I am going to stop calling my fungal infection blastomycosis and refer instead to BC fungus G2X19. I have studied BC fungus G2X19 in detail over the past 2 years and regret that the other MDs I have encountered are not even curious enough to discuss this with me. They have confirmed my view that physicians are technicians and not scientists. BC fungus G2X19 resembles blastomycosis and my history of illness is consistent with many reports in the literature. Most of the features of my illness in the past 2 years can be explained by infection with BC fungus G2X19: this included the initial presentation which was alarming; the favorable response to itraconazole treatment; the recurrences when itraconazole was stopped; the pleural effusion that occurred a year later when granulomas( indicating fungal infection) were seen on CAT scans of my right lung and my liver; the infection continues to this day, but is controlled by daily doses of itraconazole.
4 The augment that "it has never occurred before" is typical of human assumptions that lead to error. The argument that you cannot have a disease that is uncommon is also spurious. Our attitude toward infection detection and reporting needs an overhaul. See Infection Surveillance.
5. Medical doctors receive a lot of information about anonymous groups of people, but they care for individuals that they know personally. They have difficulty moving from anonymous generalities to individual patients.
6. Another spurious argument that both female physicians pursued is that a physician should not make his own diagnosis and prescribe treatment for himself. I have spent the past 25 years advocating self care for every intelligent person, including myself. Without intelligent self-care most sick people will find themselves in a limbo with inadequate information and little or no supervision. Brief visits to a busy doctor are not adequate to manage the chronic diseases that are now most prevalent. The first physician I saw, an internist, was very strong in her condemnation of self care, but when it came time to make a follow-up appointment with her, she said it wasn't necessary. She advised stopping the anti-fungal agent that had improved my condition, but when I asked her what I should do if I got sicker, she stated that I should go the emergency room of a hospital. In other words, this physician did not offer continuity of care and would not assume responsibility for the careless advice she was giving me. I would have appreciated a compassionate, knowledgeable physician who would assume my care, but none was available.
7. I have learned that disappointment is inevitable when you interact with others. Human performance always leaves a lot of room for improvement. My goal is to learn from disappointments. The first challenge is to improve your own performance so that you can realistically expect better from others. This is not easy. The second goal is to study failures and to learn from them.
A profusion of fungi exists in the environment. Some fungi are able to cause an invasive infection in otherwise healthy individuals. Other fungi are opportunistic fungi that become invasive when immune defenses are compromised. Diagnosis of fungal infection is difficult. There are many problems when you try to connect a test result to a disease. Fungi are so abundant and there are so many varieties in every environment that it is seldom easy to pick just one cause among many. Fungi are inhaled and ingested. Foods always contain fungal spores and actively growing molds. Attempts to culture fungi often fail; only a small number grow in the culture media commonly used. Some new methods of detecting fungal DNA may be useful but development of reliable tests is slow and expensive.
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