Lyme Disease Controversy: Use and Misuse of Language

IN RESPONSE:

Dr. Lautin seems to take offense at the term alternative reality. Given the stakes, all medical approaches should be based on scientific studies, verifiable facts. Assertions that contradict repeatedly confirmed studies must be considered only “alternatives” until objective supporting evidence is produced. We must always be open to new findings and, if indicated, to adopting a new, perhaps continuous rather than dichotomous approach. Nonetheless, in some circumstances, the dichotomous approach is most appropriate. In the past, careful observation was the best one could do in attempting to describe phenomena; today, we can and must do better. Dr. Lautin inquires about the “ambition of the other group.” I do not claim to know what it might be but have no doubt that most of these clinicians want nothing but the best for their patients; I merely pointed out that there is no scientific basis for their practices. I counter his query with two others: Why would researchers seek to minimize the very disease we study? Would it not be in our best interests to enhance its reputation to attract more grants? I believe we take our stance because we serve the higher purpose of disseminating truth, wherever it may lie.

I do not speak for anyone except myself, a clinician who has worked with and researched Lyme disease for 20 years. I wrote my article to elicit a discussion, and apparently I was successful. Despite similarities, Lyme borreliosis in the United States is not the same as in Europe, perhaps because of differences in organism and host immunogenetics. Extrapolation from individual European cases to U.S. practice is of unclear relevance. What unique historical and physical findings define “chronic Lyme disease”? In my lexicon, the term jargon is neither pejorative nor impolite. Neither is it so defined in my dictionary (1): “the language, esp. the vocabulary, peculiar to a particular trade, profession or group: medical jargon; plumbers' jargon.” When Dr. McNeil uses the term commonly known without supporting the attached statements with facts, he does a disservice to readers, who, I hope, will review all the literature and form their own conclusions.

As Dr. Leigner points out, what appears to be Borrelia burgdorferi has persisted in certain animal models and a few humans after antibiotic therapy. Whether these patients are experiencing an illness caused by live organisms (that is, active infection) or effete organisms or debris is still a matter of debate; the scientifically proven result of this debate will determine proper therapy for such patients. Although B. burgdorferi infection can have adverse, even fatal, outcomes, the case cited by Dr. Leigner cannot be ascribed to cessation of antibiotic therapy and is not a clear example of Lyme encephalitis. Even if it were, incautious extrapolation of this sort is one reason why I wrote my article in the first place.

Precisely because we do not know everything about Lyme disease, we must be extraordinarily careful with our actions and words. We must base our practice on scientifically verified facts (rationalism), not on unsupported observations or extrapolation (empiricism). Ixodes scapularis and other Borrelia-laden ticks can carry other pathogens, but these infections should be the subject of another disquisition. One should search for these infections, and Lyme disease, when clinically warranted, but never as a diagnosis of exclusion. My published experience (2, 3) and that of others (4, 5) suggest that incorrect diagnosis of Lyme disease can cause needless suffering, expense, and delay in proper treatment. Contrary to Dr. Stricker's claim, I do not seek acceptance of any dogma, least of all the dogmatic empiricism often promoted by proponents of “chronic Lyme disease.” Without well-controlled studies by adherents to the “empiricist” approach, unsupported insights should not serve as the underpinnings of “evidence-based” or any other responsible medical practice.

• Copyright ©2004 by the American College of Physicians