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‘Chronic Lyme disease’ has no scientific basis, researcher says

by Carolyn Pennington - October 22, 2007

A recent article in a prestigious medical journal has ticked off many chronic Lyme disease advocates.

In the controversial article, Dr. Henry Feder, an infectious disease expert in the Health Center’s Department of Family Medicine and Pediatrics, who was one of six primary authors of the review study, says the diagnosis of chronic Lyme disease has no scientific basis and does not exist.

Feder says he felt it was important to write the article (“A Critical Appraisal of ‘Chronic Lyme Disease’”), published in the Oct. 4 New England Journal of Medicine, to correct some of the misinformation on Lyme disease being circulated on the Internet and elsewhere.

Some practitioners use the term “chronic Lyme disease” to describe a persistent infection from the Lyme bacterium that requires long-term antibiotic treatment and may even be incurable.

Feder, and more than 30 scientists from the Ad Hoc International Lyme Disease Group representing institutions such as Harvard, Yale, and Johns Hopkins, analyzed scientific data from dozens of existing studies.

They concluded there is no scientific evidence that the Lyme bacterium persists after an initial antibiotic treatment of two to four weeks, and no scientific basis for long-term antibiotic treatment.

“The assumption that chronic, subjective symptoms are caused by persistent infection with the bacterium that causes Lyme disease is not supported by carefully conducted laboratory studies or by controlled treatment trials,” says Feder.

“‘Chronic Lyme disease’ is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatment is not warranted.”

The article drew protests from patient advocates who believe chronic Lyme disease is common. A rally was held outside the Health Center in opposition.

Patient advocate groups say the article will make it difficult for thousands of people to get treatment for potentially debilitating symptoms.

Feder says the problem is not with prolonged inexpensive oral antibiotic treatment like doxycycline, but with the use of long-term intravenous antibiotics like ceftriaxone, which is expensive, toxic, and has serious side effects.

Lyme disease is the most common tick-borne infection in the northern hemisphere. Factions of doctors and patients have argued for years over its severity and long-term symptoms.

The infection manifests itself in a number of ways, including a characteristic skin lesion, certain neurological and cardiac symptoms, and arthritis, all of which usually respond well to two to four weeks of antibiotic treatment.

A minority of patients continue to have fatigue, joint pain, and difficulties with concentration or short-term memory after successful treatment of the acute infection.

Typically, these post-Lyme symptoms resolve over time, with or without re-treatment, and are not due to persistent infection, says Feder.

Dr. Henry Feder, an infectious disease specialist at the Health Center.
Dr. Henry Feder, an infectious disease specialist at the Health Center.
Photo by Carolyn Pennington

“I feel for these patients,” he says.

“I want to help them, but most of their evidence on the efficacy of treatments is anecdotal.”

Some of the testimonials are from people who say they got better after 12 months of antibiotics, longer than the regimen used to treat tuberculosis, he adds.

No rigorous study has found that patients infected with Lyme disease benefit from long-term courses of antibiotics.

Also, many suffer adverse side effects from antibiotic treatment. Many patients are diagnosed with chronic Lyme disease based on non-specific symptoms, such as fatigue and the inability to work.

Feder says unfortunately, serious problems like depression may be missed if a diagnosis of chronic Lyme disease is made.

The International Lyme and Associated Diseases Society disputes the article, and asserts there is a growing body of published reports in medical journals showing that chronic Lyme disease does exist.

The society is gathering data about patients who get well with long-term antibiotic treatment.

The International Lyme and Associated Diseases Society has its own treatment protocols for chronic Lyme disease, which differ greatly from the guidelines issued by the Infectious Disease Society of America.

Feder acknowledges that some people treated for the disease with antibiotics have recurring symptoms, but says there is no evidence Borrelia burgdorferi, a biological Lyme disease agent, can hide in the body as a cyst and then bloom later as active bacteria, as proponents of chronic Lyme disease claim.

He says he and other doctors sometimes simply don’t know what is making some patients so sick.

Those patients are particularly susceptible to doctors who claim they can cure their symptoms.

Patients who believe they have chronic Lyme disease come to him wanting long-term antibiotics, Feder says.

It is difficult to explain that chronic Lyme disease has not been scientifically demonstrated, and that long-term antibiotics may be harmful.

“I try to address and treat their symptoms without using antibiotics,” he adds, “but that is easier said than done.”

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