New Book on Lyme Disease Takes Controversial Stance

Can the infection spread by ticks become a chronic condition requiring long-term antibiotics?

Cover image of 'Beating Lyme'

You get bitten by a tick and then develop a bull's-eye rash—the one you've heard can mean Lyme disease. What should you do next? The best bet is to see a doctor right away, because a prompt prescription for antibiotics can keep the infection from spreading to the nervous system, the heart, and the joints, according to the Centers for Disease Control and Prevention.

Nearly 20,000 cases of Lyme disease were reported to the CDC in 2006. The infection is transmitted to people through the bite of an infected deer tick (aka black-legged tick). Symptoms include fever, fatigue, headache, and a characteristic rash called erythema migrans. Doctors diagnose the condition on the basis of those symptoms if a patient has potentially been exposed to deer ticks.

Many people get Lyme disease, take a few weeks of antibiotics, and recover fully, experts say. But there is also a debate over whether some people, long after being bitten by a tick, continue to be affected by a "chronic" form of Lyme disease. The crux of the issue is whether certain persistent symptoms—including pain, fatigue, and other problems—that some people complain of are due to a lingering Lyme infection rather than some other cause. People in this camp say chronic Lyme symptoms necessitate long-term antibiotic therapy, with pills or IV meds given for months or years.

A new book, called Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease, provides insight into the arguments that supporters of the chronic Lyme viewpoint make in favor of aggressively treating the condition. The book recounts the experiences of those who say they have long-lasting and at times debilitating symptoms of the condition years after being bitten by a tick. The book just hit store shelves.

Many medical experts, however, don't believe chronic Lyme disease exists. After the infection is initially treated with a few weeks of antibiotics, they maintain, it clears up, making further antibiotic therapy unnecessary. While people with chronic problems after a tick bite may indeed be sick, these doctors say, their symptoms are not due to a lingering Lyme infection, and they risk problems associated with overuse of antibiotics by continuing such treatment.

An October New England Journal of Medicine article took this viewpoint, in contrast to that of the new book. It issued a "critical appraisal" of chronic Lyme disease, a term sometimes used interchangeably with "late Lyme disease." The "chronic" diagnosis is used, according to the NEJM piece, in North America and Europe, for people who experience persistent pain, fatigue, and neurocognitive symptoms, with or without prior evidence of Lyme disease. The article's authors question the use of the term "chronic Lyme" to explain these patients' symptoms—and they say long-term antibiotic therapy isn't the answer to treating these patients. Instead, the goal should be to provide support and management of pain, fatigue, or other symptoms, the authors write, and doctors should explain to patients that no antibiotic can cure lingering symptoms.

Henry M. Feder Jr., the lead author of the NEJM piece, says that he believes some patients still feel ill long after initial treatment for Lyme, but research shows that using antibiotics to treat them long term doesn't work. "It does seem that after Lyme, some people seem to have some lingering complaints," Feder says. Supporters of the chronic Lyme diagnosis argue that such symptoms are due to persistent infections, but Feder says that there have been studies done "where they've treated these patients [with antibiotics], and treatment showed no difference. Further antibiotic therapy didn't help."

Still, some patients, like Beating Lyme's coauthor Constance A. Bean, say that antibiotics—which she took on and off for about 12 years after a 1993 tick bite—made all the difference. "I improved on antibiotics," Bean says. "I stopped having to go to the hospital.... People have to do what works for them."

The best way to avoid Lyme disease altogether is to avoid tick bites. Here are three tips on preventing infection.