In 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.
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.
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.
(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.)
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.
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.