Lyme Disease Treatment Guidelines: All Wrong?

As tick season heats up, the debate over how to treat Lyme may be approaching a game-changing moment.

June 5, 2009

Some doctors think tick-induced Lyme disease lasts longer than a few weeks.

At this time of year, many of us are used to warnings about ticks and the Lyme disease that they can impart to humans. But you may not know that a major debate is raging about how to think about and treat the often-elusive illness. And now, after years of contention between two camps, a reconsideration of the standard advice is on the horizon.

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Last month, the Connecticut State Senate unanimously approved legislation that will protect doctors who treat Lyme disease patients by allowing them to diagnose the disease based on symptoms (as opposed to a lab test) and consider lyme disease treatment options that may include long-term antibiotic therapy. Both those approaches are not supported by current treatment guidelines. The bill, which is awaiting the signature of the governor to become law, is not without critics—most notably, the organization whose guidelines are generally accepted as standard practice for treating Lyme. “Infectious Diseases Society of America [IDSA] believes very strongly that the bill that passed in Connecticut is not a good bill,” says Paul Auwaerter, MD, IDSA spokesman and clinical director of infectious diseases at Johns Hopkins University School of Medicine in Baltimore. “It takes politicians and inserts them into the medical decision making arena. We do not think this kind of bill ends up in the patients’ best interest.” Without the protection of the bill, a state medical reviewer can pull licenses of doctors who treat in a way not outlined in IDSA guidelines. Bill or no bill, however, those treatment guidelines are being reconsidered.

THE DETAILS: Lyme disease may be one of the most politically charged diseases in this country. That’s because there are two schools of thought: IDSA does not believe that Lyme can evolve into a chronic condition and stands by its guidelines that recommend a short course of antibiotics—up to 30 days—for those who test positive for the disease. The group also believes that many people are being told they have Lyme when they really don’t, which leads to unneeded treatment and the development of antibiotic-resistant superbugs. In fact, Dr. Auwaerter says that 80 percent of people he sees in his Lyme clinic don’t actually have Lyme disease. And his group also points to a lack of scientific studies that prove that longer prescriptions of antibiotics actually help patients.

On the other side of the discussion stands the International Lyme and Associated Diseases Society (ILADS). This group of doctors believes Lyme is a complicated disease that involves more than a tick bite and achy joints. They think the disease can become chronic, affecting nearly every system in the body, including neurological and psychiatric health. Their guidelines involve spending a lot of time with a patient, reviewing symptoms, and considering coinfections that can be transmitted by the same tick bite that spreads Lyme disease. Doctors of this camp believe long-term antibiotics can help some chronic Lyme sufferers, perhaps those who didn’t get treated at the time of a rash, or who didn’t show initial symptoms within a month of being bitten. “In the ‘70s, they focused on the rash and joints, but since that time, they’ve identified more complicated Lyme disease cases, ones with neurological, psychiatric, and chronic disease problems,” says Daniel Cameron, MD, epidemiologist and president of ILADS. “As we realize how complicated it is, some doctors are holding on to the old ideas of the ‘70s, that you have to have a rash. A lot of doctors in practice say their patients are more complicated.”

Connecticut, where the first documented cases of the disease popped up in the 1970s, remains ground zero for Lyme disease. In 2006, Connecticut Attorney General Richard Blumenthal opened an antitrust investigation into IDSA and its guidelines. As a result, the organization and an outside expert will review their guidelines this summer. “This agreement vindicates my investigation—finding undisclosed financial interests and forcing a reassessment of IDSA guidelines,” Blumental said in May 2008 as the investigation closed. He contends that financial interests among members the IDSA’s guideline panel influenced their recommendations and caused them to discount evidence that Lyme can be a chronic condition. Should the guidelines change, it’s liable to affect almost anyone who’s infected, since IDSA guidelines are commonly applied by insurance companies in restricting long-term antibiotic treatment and strongly influence physician treatment decisions.

WHAT IT MEANS: Avoiding ticks not only spares you an unpleasant illness, it could also keep you from having to navigate conflicting treatment options, intransigent insurance companies, and controversial legal issues.

While politicians, rival schools of medical thought, insurance companies, and investigators try to untangle the conflicting guidelines of Lyme treatment, here are some points to keep in mind if you think you’ve been infected:

• Don’t rely on a rash. By some estimates, a bull‘s eye rash appears in just half of people bitten by ticks; less than half don’t even recall being bitten by a tick. Some people show symptoms soon after being bitten by a tick, such as fever, rash, and flu-like symptoms. Some develop different types of rashes, such as red, raised, flat, or purple ones, but never relate them to a possible case of Lyme. For others, there are really no symptoms at the time of the bite. According to ILADS, chronic Lyme sufferers can experience panic attacks, anxiety, irritability, depression, dizziness, memory and concentration issues, ringing in the ears, and even things like acid reflux.

• Get a second opinion. “When someone is told they don’t have Lyme, they should at least be aware that other doctors may disagree,” says Dr. Cameron. “Other doctors might come to a different conclusion. If you’re sick and really having some chronic problems, know that you might have to revisit Lyme disease.” Some doctors go strictly by initial screening blood tests, which miss 35 percent of Lyme cases, Dr. Cameron says. The follow-up Western Blot test does not always show positive results for people who have had Lyme for a long time. He says people with Lyme are often diagnosed with chronic fatigue syndrome, fibromyalgia, anxiety disorders, sinusitis, migraines, or depression.

Word of mouth may help you find a doctor for a second opinion, or you can visit Lyme advocacy groups online, where users are more than happy to share their stories and information on doctors.

For more information about Lyme, and how to prevent it in the first place, visit our Lyme Disease Topic Page.

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