Wednesday, May 28, 2008

Why doesn't my doctor believe in Lyme disease?

This really is a key question. Most doctors accept the reality of acute Lyme disease. It is seen as a minor nuisance which is easy to treat. They accept that a few patients have serious complications, such as cardiac conduction problems which may be life threatening. But they do not believe in chronic Lyme disease. They have been informed that it doesn't exist. Doctors who take chronic Lyme seriously find themselves to be a small devoted minority. Most of them have probably stumbled into the field because a family member or they themselves have suffered with Lyme. To those who treat it every day it is a clear as the nose on your face. To those that do not, it is simply not real, period. Lyme physicians and their patients find themselves incredibly frustrated. The symptoms are real. The abnormal physical examinations are real. The abnormal labs are real. The Herx is real. The improvement is real. And what do these non believers have to say about any of it. Nothing. Is there an alternative explanation or diagnosis. No. They are quick to say what it is not. It is NOT LYME. What is it? we don't know. To these "mainstream" doctors chronic Lyme is just another fad which will over time become discredited. They point to such past popular diagnoses as "the yeast connection" or chronic Espstein Barr infection, and lump chronic Lyme into the category of such things that are destined to be thrown in the waste bin of medical history. This gets up the dander of "Lyme" docs. What do these mainstreamers say about hundreds of peer reviewed scientific papers, published over more than a decade which validate the notions of chronic Lyme? Nothing. They haven't read them and they don't have to. The "experts" say is hogwash, and that's good enough for them. Of course it depends which "experts" you are talking about. So the "Lyme docs" have called themselves LLMDs (Lyme literate Medical Doctors). I don't think this has helped the cause. This makes this group of physicians appear almost cult like, outside the mainstream, more arrogant, zealots on a mission and therefore easier to marginalize and dismiss. The discussion frequently becomes personal, vitriolic. Anger does not help with communication. It causes the message to be lost. In actuality the message that chronic Lyme is a canard has been pushed by a single organization. The IDSA. The Infectious Disease Society of America. I will step out on a limb. I do not mean to cast any aspersions, but the names Wormser and Steere seem to surface whenever this position is pushed. The CDC is in lock step with the IDSA, but the CDC does not do any research here. They have deferred to the opinions of the IDSA. Even the IDSA posts a disclaimer with its guidelines. It essentially admits that they are guidelines, IE an opinion. They are not carved in stone. Perhaps the whole argument is about something basic, something for which there is much precedent in the history of medicine and science. Perhaps it is about the process of a paradigm shift.

Thomas Kuhn, a physicist and Historian of Science coined the term paradigm shift in the middle of the 20th century. The essence of his thesis was that normal science involves work which incrementally adds pieces of data to an established paradigm. A paradigm being a basic theoretical construct that researchers can generally agree upon which forms the foundation of their work. Scientist by in large are not creative. They are methodical. It is their job to add to the paradigm. to prop it up. Evidence which goes against the prevailing paradigm tends to be discarded. Worse, it has been common for the source of that unwanted information to be discredited. If the new information is indeed correct, then the old paradigm might have to be torn down and a new one constructed. What an unpleasant thought!
If scientist were to jump on the band wagon of every new idea that comes along it would be disruptive, and nothing would ever get done. Most revolutionary ideas are wrong. But not all. Every revolutionary, paradigm shifting idea that comes along is science or medicine is crazy, a crackpot theory, ridiculous and so on, until they day it becomes accepted. And then it is BRILLIANT. Paradigms do not shift without a paradigm war. Many have spoke of the "Lyme wars." Paradigms do not fall easily. Without paradigm shifts we would have a flat earth with earth the center of the universe. There would be no Newtonian physics, no germ theory of disease, No Einstein's relativity and no germ which causes peptic ulcers. By the way, the two researches who made this absurd claim were ridiculed for years and then ultimately awarded a Nobel prize in medicine.

Another notion has to do with a theory in psychology caused cognitive dissonance theory. Roughly, it states that when someone is presented with evidence which contradicts a deeply held belief it creates a lot of unhappiness or anxiety in the individual. The individual wants to quickly resolve the matter. Either the deeply held belief must change or the facts must change. People don't like to change deeply held beliefs, so the facts are changed. A non medical example of this theory explains some incredible behavior of prosecuting attorneys. Someone has been put in jail for murder. The person has languished there for 20 years. New DNA evidence proves beyond any shadow of a doubt that the accused is innocent and has been falsely imprisoned. The prosecutor refuses to reopen the case. He knows he a good and kind person and that he serves the welfare of the community. To consider that he had erroneously imprisoned a man for life would challenge his most fundamental beliefs about himself. This is unacceptable. He refuses to reopen the case. The prisoner will spend another 20 years languishing in a hell he doesn't deserve. This example describes a basic principal which governs much human behavior. If a physicians has spent 25 years practicing medicine according to a particular paradigm and a new paradigm suggests that he has been doing everything wrong, he might just resist that new paradigm with every fiber of his being.

That is why I believe that your doctor does not believe in Lyme disease. As it has been said: There is none so blind as he who will not see.

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