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Still in the Lyme LightPoliticians and Hollywood enter the debate over "chronic Lyme disease."

By Kent Sepkowitz Posted Tuesday, Sept. 30, 2008, at 6:35 AM ET

Adult deer tick. Adult deer tickIn the 30 years since its discovery, Lyme disease has been in the headlines every time you turn around. First came its identification in the 1970s, a cautionary tale of alarmed moms forcing doctors to examine a problem happening right under their self-satisfied noses. Then, in those prudish pre-AIDS days of public health, it provided a scary-enough new disease for journalists to crow about—though unlike herpes, the rival hot disease at the time, Lyme was completely above the belt.

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This year, Lyme has outdone itself, coming in with not one but two big skirmishes. Both relate to the puzzling and demoralizing condition often referred to as "chronic Lyme," a syndrome that includes fatigue, headaches, forgetfulness, and other symptoms. In May, Richard Blumenthal, attorney general of Connecticut, the disease's ground zero, announced an antitrust investigation of the Infectious Disease Society of America—specifically addressing the treatment of Lyme, including chronic Lyme. Blumenthal targeted the professional society because of the perceived potential for collusion resulting from the 2006 IDSA guidelines on the diagnosis and management of Lyme disease. In his investigation, he found "serious flaws" propagated by those numskull doctors and pressed his point effectively enough to force a re-review of the guidelines by yet another panel of experts.

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Sydney Spiesel looked at Morgellons, another disease that has patients battling doctors. Constance Casey examined the life of a tick. Kent Sepkowitz wrote about the excesses of medical conventions, including the IDSA's. In 2000, the tabloids examined Richard Gere's battle with Lyme disease.

And then Hollywood piled on as the movie Under Our Skin ("An infectious new film about microbes, money, and science") began to make the rounds at film festivals. This movie, too, digs deep at the IDSA and sees the entire Lyme-treatment world in conspiratorial terms, suggesting doctors dabble in human disease for fun and profit.

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(Disclosure: I am a card-carrying member of the IDSA. I pay dues. I attend meetings. I read society writings. Like most professional societies, IDSA is a somewhat clumsy collective, a bunch of people not really comfortable with Robert's Rules but, like diabetic children cheerfully going off to summer camp together, still in need of the assurance given by meeting with other people with the same problems.)

The smoking tractate in all this is "The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America." As a guideline promulgated by a professional society, it continues a fashion that became the rage about 15 years ago when HMOs insisted that treatments be standardized. Rather than have the HMOs set the rules, professional societies, for reasons of pride, cash, and selfishness, began to churn out tome after tome—IDSA has about 50, and we occupy only a small corner of the medical world. The guidelines are often used by insurance companies to determine what constitutes an allowable medical treatment; with chronic Lyme, many patients have found months of intravenous antibiotics to be helpful, yet insurance carriers had been hesitant to pay, given the high cost of the treatment.

In the Lyme guidelines, the IDSA expert panel declared it could find no evidence to support the existence of chronic Lyme disease, which led HMOs to deny payment for long-term intravenous antibiotic therapy for many patients. To support its rejection of chronic Lyme disease, IDSA cited among the 405 referenced articles from the medical literature, many written by panel members—for some, a medical version of insider trading and something Blumenthal and the Under Our Skin crowd scoff at. (Admittedly, medical publication is a self-fulfilling, self-promoting circle in which insurgents crawl to the top, then maintain their lofty positions by squashing pretenders and rewarding only the most groveling toadies.)