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lyme disease treatment legislation

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.

By Leah Zerbe

tags: LYME DISEASE



Lyme Disease Treatment Guidelines: All Wrong?

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.

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.

Published on: June 5, 2009
Updated on: August 30, 2012



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Tick-borne diseases

Please be aware, for anyone living in New England or along the East coast- there are two other diseases carried by ticks in our area. Anaplasmosis (formerly called Ehrlichiosis), and Babesiosis. My husband was just diagnosed with Anaplasmosis after being found negative for Lyme (but only after we requested the test). A friend was diagnosed with Babesiosis last year after demanding to be tested for ALL tick-borne diseases common to our area, northwestern Connecticut. Lyme is not our only problem.

Chronic Symptoms

Long-term antibiotics took away the pain and fatigue. It improved my walking some. However, I have not been able to walk without assistance in 13 years. I cannot play with my 3 year old daughter at the playground. I cannot have a completely independent life. I have been thrown out of more doctors than most people will see in a lifetime. I have traveled the country, had to go to Canada and Mexico for treatment, medicine, etc. And people still think this is in my head! I can't find a doc who can find anything else wrong with me! I also have no way to just see a general practioner for something like an ear infection. They all think they need to rediagnose me. This is hell and I wish every doctor who thinks a couple weeks of antibiotics will do it and chronic lyme does not exist would rot in the hell I will live in my entire adult life.

lyme treatment

then why after 8 years and a ruined childhood did i only improve from lyme disease on long term antibiotics. i tested positve for lyme and one co-infection. smearing feces on wounds used to be an acceptable treatment to prevent infection. if doctors arent open to new ways of treatment for such an elusive and complicated disease there really is no hope for countless people who want there life back. listen to your colleages who treat patients with lyme everyday and not a set of guidelines from biased individuals or groups.

Treatment Recommendatios for Lyme Disease

The key question any patient should ask their healthcare provider is what evidence exists that a proposed treatment will benefit them? In the case of long-term or combination antibiotic use for Lyme disease, there is no convincing evidence that this approach offers substantial benefit to patients.

Infectious disease physicians have long advocated for the appropriate duration of treatment to avoid complications of antibiotic resistance and adverse drug reactions. Although some patients do experience continued problems after treatment for Lyme disease, carefully performed studies have been unable to find evidence of persisting Borrelia burgdorferi infection. Since some patients improve on their own accord (for example, patients randomized to receive either antibiotic or placebo approximately one third are improved after six months regardless of which treatment they received), I am afraid that testimonial successes employing long-term antibiotics should not be taken as evidence for medical decision making.

For patients with persisting symptoms, other non-antibitioic approaches may yield improvement, but much further study is needed. What can be strongly stated is that long-term antibiotics have been studied and are not in the best interest of patients with Lyme disease. For assistance with finding a physician who aims to use the best available scientific evidence to help direct your care, visit a resource such as the American Lyme Disease Foundation (http://www.aldf.com/programs.shtml).

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