Tick, Tick, Tick...

At the University of Minnesota, Craig Hedberg says he believes The New England Journal article “represents the synthesis of the best science so far as it relates to so-called chronic Lyme.” Hedberg is an epidemiologist, and epidemiologists “look at populations, not the individual,” and, “on a population basis, there is significant cost to treating people who don’t have diseases that can be treated with antibiotics.” In the studies Hedberg has seen, he says, long-term antibiotic treatment has not helped patients, while there’s little doubt, he says, that the overprescription of the drugs is pushing the development of antibiotic-resistant “superbugs” in the general population. “If there weren’t significant downsides to the treatment,” he says, “it wouldn’t be an issue.”

Needless to say, the “chronic Lyme” forces responded quickly to The New England Journal position. The International Lyme and Associated Diseases Society, based in Bethesda, Maryland, released a statement arguing that “the article does not reflect real-world patient experience with the disease” and “perpetuates the narrow viewpoint” of a cadre of academic researchers. The websites and blogs of patient advocacy groups and individual Lyme sufferers lit up the Internet. Some critics accused mainstream researchers and physicians of conflicts of interest and alleged that their objectivity has been compromised by the not-so-invisible hand of pharmaceutical manufacturers and insurance companies, which have their own reasons to deny “chronic Lyme.” Here at home, Betty Maloney wrote a letter published by The New England Journal in January, raising points of science that, she says, challenge the October findings and show “characteristics favoring persistence and necessitating longer courses of antibiotics.”

Some mainstream doctors have cautioned that “Lyme anxiety” may be a greater threat than the disease itself, and the controversy has, in some places, reached fever pitch. State medical boards have brought or threatened sanctions against physicians treating Lyme patients beyond conventional standards, while sympathetic lawmakers have drafted legislation to shield “Lyme doctors” who prescribe extended antibiotic treatment. (Bills prohibiting the state’s medical practice board from disciplining doctors for prescribing long-term antibiotic therapy were introduced this spring in both the Minnesota House and Senate.) Two years ago, Connecticut’s attorney general launched an investigation of the IDSA, which issued the treatment guidelines; other attorneys general around the country have taken action against devices marketed as Lyme remedies. Famous patients such as author Amy Tan and singer Daryl Hall are featured in demands for increased research funding, and a feature-length documentary film that promises to “uncover the shocking human, medical, and political dimensions of Lyme disease” is due out this year.

“Lyme has become a very political disease,” Maloney says. She says her objective these days is to educate her fellow physicians, who, she believes, are missing too many Lyme diagnoses and doing too little to alleviate patients’ pain and suffering. “It isn’t as though I am some fringe practitioner or maverick,” she says, while acknowledging that her position challenges medical orthodoxy. “Sometimes, when you’re on the cutting edge,” she says, “your fellow physicians may not understand why you’re there. The medical board may not understand why you’re there.” Meanwhile, “of 100 patients diagnosed with early Lyme disease, you’ll probably get ten to fifteen who aren’t successfully treated and are likely to have long-term problems.” And there’s no telling how many persons who are never diagnosed or treated wind up with those problems.

“Borrelia burgdorferi is a complex organism,” Maloney says. “It has different forms and can switch forms under different conditions. Thus, when there’s treatment failure, there are a whole host of things we should be considering. People do reach a point where further antibiotic treatment is not going to help, but when that point occurs should depend on the individual, not an arbitrary ‘four weeks and you’re done’ rule. The very real risk of too much antibiotics has to be balanced against potential gains. With Lyme disease, you want to make sure you kill the bacteria, then stop.”

The controversy does not end with treatment. There are two standard blood tests for Lyme, ELISA and the Western blot. Critics say the tests are “insensitive,” return too many false positives, and can vary widely depending on which lab is providing the results. The health department’s Kemperman says, however, that “ELISA is very sensitive. It’s going to catch most people who have Lyme disease, and, yes, it’s also going to catch some people who don’t. But, if you combine ELISA with the Western blot, you’re likely going to exclude the people who don’t have it. Combined with the presence of a rash, other objective signs such as swollen joints and Bell’s palsy, and a history of exposure to deer ticks, it’s a pretty good indicator of Lyme.” Maloney, for her part, has written, “testing does not offer a reliable laboratory shortcut to the diagnosis of Lyme disease.” Lyme, she says, “remains a clinical diagnosis” based on “exposure history, symptoms, and exam findings.”

Some advocacy groups have suggested that the disease, once contracted, may be transmitted to others via breast milk and sexual contact, but the CDC and other official sources categorically refute both possibilities.

Though the situation in Minnesota has not been as bruising as it’s been in other areas, the frustration is obvious on all sides. Kemperman puts it this way: “One group is saying, ‘We have chronic Lyme,’ and another group—largely the medical profession—is saying, ‘You might, but probably don’t.’ Causality is important. You can have an association between two things, but determining whether A actually causes B is another matter. The problem is, people are suffering.”

Once Kevin Stephan, the Duluth infectious disease doctor, was certain he had Lyme disease, he suggested he be prescribed what amounted to a two-month course of ceftriaxone and doxycycline. “I got a catheter put in my arm and infused myself even while making my rounds,” he says, laughing. He concedes that, by the current standard, two months was a long time to take the antibiotics.

“But here’s the deal,” he explains. “I felt better at one month, which may be what the guidelines say, but I didn’t feel normal. I was still numb occasionally, I couldn’t use my hand completely, and my face still felt funny when I shaved. So I thought, ‘What if we have the disease up against the ropes, but haven’t knocked it out yet?’ I was tolerating the antibiotic, I wasn’t getting sick from it, and the lab results [to monitor possible harmful effects of the antibiotics] looked good—so why not one more month? There are those who say, ‘Well, you might have gotten completely well if you had stopped at one month’—but I have no way of knowing that. I based the treatment on my symptoms, and I treated [the disease] until the symptoms were gone, and the symptoms haven’t come back. I just feel so good again. I’m back running twenty-five to thirty miles a week and haven’t had any residual problems whatever.”

“Lymies” say Stephan is one of only two “Lyme–literate” physicians in Minnesota—and he is apparently the only one willing to talk about his practice. Even so, he’s uncomfortable with the handle. “It’s not necessarily a compliment,” he says with a sigh. “As you know, there are a lot of opinions as to what Lyme is and what it isn’t and how you should or shouldn’t treat it. Being closed-minded on either end of the spectrum is probably not appropriate. When there’s good science, I try to use it because I believe in evidence-based medicine. Quite frankly, I don’t think the science has caught up with the patients. We have a fairly rudimentary understanding of what this spirochete can do when it gets in the body. On the other hand, there are physicians who think we know pretty much everything there is to know about it and the case is closed. The more cases I see, the more I’m humbled by what we don’t know.”