New guidelines that discount the existence of a chronic form of Lyme disease and discourage long-term antibiotic treatment are stirring up controversy about how best to manage the tick-borne illness.

The guidelines also recommend against combining antibiotics to treat the disease, and give a thumbs-down to experimental or alternative therapies – things like hyperbaric oxygen therapy and vitamins/nutritional supplements.

Members of the Infectious Diseases Society of America, which wrote the new guidelines, contend they are based on the best scientific evidence available. The society, which is based in Alexandria, Va., represents physicians, scientists and other health care professionals. The guidelines were published in the Oct. 2 issue of the Journal of Clinical Infectious Diseases.

“These guidelines are based on more than 25 years of (clinical) experience and scientific studies … . Unproven and experimental therapies are not endorsed,” said Eugene D. Shapiro, a professor at Yale University School of Medicine who helped draft the guidelines.

But some Lyme patients and advocacy groups, as well as doctors, said those suffering from the disease will be harmed.

The Lyme Disease Association Inc., a national patient education and advocacy organization, has started a petition drive on its Web site ( to protest the guidelines. More than 9,000 signatures have been collected, as have many personal stories.

The guidelines “remind me of the Ten Commandments; they are full of “Thou Shalt Nots,”‘ said Jeannine Phillips, 56, of East Brunswick, N.J., who heads a local Lyme disease support and advocacy group.

The standard course of antibiotic treatment for Lyme is three to four weeks, but some patients end up being treated well beyond that, in some cases for months or years.

Some pharmacists now are refusing to fill antibiotic prescriptions for patients, Phillips said.

“One person had their insurance company deny treatment because the guidelines do not recognize Lyme can be a chronic disease,” said Pat Smith, who heads the Lyme Disease Association. “These (guidelines) are absolutely devastating.”

Lyme disease is transmitted by a tick bite and is sometimes characterized by a round, red lesion with a bull’s-eye appearance. People who are bitten may experience joint pain and flu-like symptoms, such as muscle aches, fever and fatigue.

If left untreated, the bacteria can cause heart palpitations, arthritis, severe joint pain and swelling, short-term memory loss and chronic neurological problems.

Shapiro, a professor of pediatrics, epidemiology and investigative medicine at Yale, said more than 95 percent of those who get Lyme respond to a short course of antibiotic treatment.

“If there was evidence that prolonged antibiotic treatment was beneficial, I would jump right on the bandwagon,” he said.

If kept on antibiotic therapy too long, patients can develop antibiotic resistance or even infection from intravenous lines, he said.

Shapiro said the new guidelines, which address treatment at different stages of the disease, provide “plenty of room for clinical judgment” and are meant to assist doctors, not dictate to them.

Because Lyme symptoms can be very nonspecific and in some cases mimic other diseases, such as multiple sclerosis, diagnosis can be difficult. This is especially true in cases that lack the identifying rash or for which there is no positive blood test.

And when it comes to chronic Lyme, the new guidelines contend “there is no convincing biologic evidence” to support its existence in patients who have been appropriately treated with recommended antibiotic therapy.


(Angela Stewart writes about health care for The Star-Ledger of Newark, N.J. She can be contacted at astewart(at)

AP-NY-11-06-06 1304EST

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