Politicians and Hollywood enter the debate over "chronic Lyme disease."

Health and medicine explained.
Sept. 30 2008 6:35 AM

Still in the Lyme Light

Politicians and Hollywood enter the debate over "chronic Lyme disease."

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It may appear suspicious to outsiders for IDSA members to cite their own expertise. But these are the articles that established their bona fides to sit on the panel. Unless we should exclude all experts from any expert panel because they are experts, it's a problem we are stuck with. Though I must agree with one aspect of the outsiders' view: Most experts, bless their hearts, are a mess. They are spilling over with professional rivalries and hostilities, limping from turf wars, and liable to tantrums and intellectual narrowness, and they sport egos growing like new blisters and every bit as fragile. But be kind—they have spent their careers working on a certain disease. They have run the trials, given the talks, staged the symposia, and written the standard-setting articles. It is impossible to get in a room people who both know everything about a subject and are free of conflict. (I find the conflict-of-interest charge ironic, given the large number of nonspecialists making big bucks in the treatment of chronic Lyme.)

Even if one discounts the self-aggrandizement of medical publishing, the experts do have one thing patients, moviemakers, and even AG Richard Blumenthal lack: experience in treating infectious diseases. Dealing with infections all day, every day, is informative. Stated another way: Why do the Car Talk guys know what that rattle is when your car turns left but not right? They know what is and what is not possible in their field of expertise, and they narrow things from there. The carburetor, for example, is not likely to rattle, because troubled carburetors wheeze and kick. Click and Clack know this.

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So, too, for doctoring, despite Lyme's peculiar pedigree: It is related closely to syphilis, that most wily of all infections. We still cannot grow either bacterium (the one that causes syphilis can be cultivated after inoculating the testicle of a rabbit; for Lyme, no comparable animal-assistance program has been developed), and we still do not have accurate blood tests to diagnosis these two infections. This substantial shortcoming would appear to make the existence of something unexpected, like chronic Lyme, more plausible. Yet the similarities between Lyme and syphilis actually support the IDSA doctors here. Yes, there is much about syphilis we don't know—but like Click and Clack and their carburetor, we do understand what it doesn't do. Syphilis doesn't resist treatment. Plus, when you have it—really have it, especially in your brain—it is not at all difficult to find. Its pathologic footprints are everywhere. And once treated, it does not enter a prolonged stage that requires years more of antibiotics to beat back.

However, Connecticut and Hollywood both smell a rat. They see a gaggle of uncaring doctors in it for the dough and ego and intrinsic joys of sadism. And for them, this dismissal of chronic Lyme is nothing but another example of patients insisting a disease is making them sick while doctors scratch their heads and can't find a trace—shades of chronic fatigue and Morgellons and fibromyalgia. Myself, I don't believe in chronic Lyme, but the people afflicted with the syndrome likely have some disease or another, medical, psychiatric, or something in between—and the third-class-citizen status afforded them is an embarrassment to doctors everywhere. Perhaps the biggest loser in the debate is Sigmund Freud. One hundred years after his revolutionary work, the worst thing a doctor can do in 2008 is to suggest that a patient's problems are emotional, that physical pain arises from emotional turmoil. I've made the suggestion to a few patients along the way, and it is roughly akin to telling someone you think he is a pederast. People want physical problems—hard-core ailments like broken legs and lobar pneumonia. Try treating those with Zoloft.

Given the impasse between doctors and patients over a condition that affects thousands, may I make a modest proposal? Let's study the problem. Not another McCain Commission of blue-ribbon windbags to meet and congratulate one another—rather, let's do a clinical trial to determine the effectiveness of antibiotics: double-blind, placebo-controlled, the whole works. Doctors and patients together could design the study, as is done with AIDS and many cancer trials. And if antibiotics work, great—the doctors are wrong yet again. If they don't, then it is on to the next therapeutic approach till we find something that does the trick. Just one ground rule: Neither side can assume the other is a sleazeball (hear that, patients?) or a nut (you, doctors). After all, this is a real public-health problem before us, regardless of the cause—and it is surely in the interest of one and all to place the debate on sound footing.

Kent Sepkowitz is a physician in New York City who writes about medicine.

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