Who knew a little tick could cause so much trouble? When Lyme disease was first described in 1977, did anyone suspect that three decades later, a battle would be raging between two professional organizations about how to treat it? Today, the “war” between the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) leaves clinicians wondering whose guidelines they should follow.
Is it a case of David versus Goliath—the “upstart” ILADS challenging the established IDSA—or evidence-based medicine versus questionable practice? The more you listen to the parties involved, the more difficult it can be to determine the answer.
Chronic Problem
The crux of the Lyme disease treatment debate is whether the condition exists in a chronic form. ILADS practitioners insist that it does; how else to explain the lingering symptoms many patients experience, which they say resolve only with long-term, high-dose antibiotic therapy? IDSA, however, takes the viewpoint that these patients—whose symptoms of fatigue, cognitive dysfunction, and musculoskeletal pain are subjective and vague (belonging on the symptom list for chronic fatigue syndrome and fibromyalgia as well)—never had Lyme disease in the first place, and this is why standard therapy for the condition appears not to work for them.
“It’s true that those kinds of symptoms can occur in Lyme disease,” says Gary P. Wormser, MD, Chief of the Division of Infectious Diseases at New York Medical College in Valhalla, and lead author of IDSA’s guidelines. “But where the disconnect occurs is when people want to ascribe everybody with those symptoms as having Lyme disease, when they have no bona fide evidence [ie, validated laboratory results] of the disease.”
ILADS clinicians counter that the IDSA underestimates Borrelia burgdorferi (Bb), the spirochete that causes Lyme disease. “What we’re dealing with is way more sophisticated bacteria than any other bacteria we know,” says Ginger R. Savely, RN, FNP-C, a Lyme disease specialist at Union Square Medical Associates in San Francisco. “The more you really study the bacteria and how it works, the more you become incredibly impressed by how many mechanisms this bacteria has for survival and how difficult it is to get rid of it.”
Furthermore, Lyme disease specialists contend that the currently available diagnostic tools, the ELISA and the Western blot test, do not have sufficient sensitivity to reliably detect the presence of Bb (see Savely GR. Update on Lyme disease. Clinician Reviews. 2006;16[4]:44-51). This, they say, is why it can be difficult to validate the diagnosis.
Bottom line: If you can’t agree on what you’re treating, you certainly won’t agree on how to treat it.
Prolonged Antibiotic Therapy
IDSA’s guidelines on the treatment of Lyme disease recommend, in general, 14-day courses of oral antibiotics, with the option of a longer course (28 days) or retreatment where deemed appropriate. “We don’t treat bacterial infections with prolonged antibiotics,” Wormser points out, citing as examples cystitis, strep throat, and sinusitis. “So when you see 14 days recommended, that’s a long course relative to many bacterial infections.”
At issue in the Lyme “war” is the fact that ILADS, in the words of President Daniel Cameron, MD, MPH, “likes to offer options to patients who find themselves still sick after 30 days of treatment”—specifically, long-term (sometimes indefinite) high-dose antibiotic therapy.
Wormser is quick to point out that “our guidelines don’t really discuss how any individual patient is to be treated. They just tell you a general approach that we think is scientifically based and makes sense, based on all other infectious diseases.” In the IDSA’s estimation, the research does not support the efficacy of long-term antibiotic therapy for Lyme disease—and in the absence of that support, the risks involved are just too great.
Those risks include the growing problem of antibiotic-resistant bacteria, the possibility of coinfection with an organism such as Clostridium difficile, and the potential for sepsis and other complications associated with prolonged IV therapy. “Would you really dialyze somebody who didn’t need dialysis?” Wormser asks. “That’s an extreme example. But we say to ourselves every time we use them, ‘Do we really need antibiotics here, and what’s the shortest period of time we can give them, not the longest?’”
“The IDSA loves to say that what we’re doing is harmful or dangerous,” says Savely, who has treated more than 1,000 patients according to the ILADS recommendations. “The data have not shown that to be true. We have not had problems or complications—certainly not mortality—from the kind of treatment that we do.”
Furthermore, ILADS clinicians say they restore hope to patients whom “mainstream” medicine has failed. “People were coming to me with just terrible, terrible conditions, where they had been to so many specialists and every one had told them, ‘There’s no hope. We can’t do anything for you,’” Savely says. “And then I’d start treating them with high-dose long-term antibiotics, and they would get their lives back.”