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Lyme disease still difficult to find, treat

New guidelines are aimed at tricky, long-term cases

Sunday, May 14, 2000

By Rachel Smolkin, Post-Gazette National Bureau

Late spring and early summer bring warmer weather and all its trappings: vacations, swimming pools, ice cream -- and Lyme disease.

Twenty-five years after the disease was first recognized in Lyme, Conn., the medical community still has not arrived at a consensus for treating or even for diagnosing it.

Existing blood tests do not accurately determine whether a patient has the disease, an infection carried by deer ticks in the northeastern and north central United States and by the Western black-legged tick on the Pacific Coast.

Lyme disease produces flu-like symptoms including fever, headaches, muscle aches and joint pain and, if left untreated, can result in arthritis, periodic joint swelling and nerve or heart problems.

Because doctors have no way to isolate the bacterial organism that causes Lyme -- as they would, for example, with the bacteria that induce strep throat -- they must rely on clinical observations to make the diagnosis.

Most doctors agree on treatment for classic Lyme disease patients -- those who went hiking in the woods, were bitten by a tick and exhibit the red "bull's-eye" rash within days or weeks. About 80 percent of Lyme victims develop such a rash, according to the Atlanta-based Centers for Disease Control and Prevention.

But if classic symptoms are absent or treated symptoms return as "chronic" Lyme disease, proper diagnosis and treatment become murkier.

Ruth Ann Tobin, co-chair of the Lyme Disease Support Group of Pittsburgh, was diagnosed with Lyme after a 1989 church trip to the Catskills. Six months after her treatment, she said, she relapsed, and then took antibiotics for four years to recover.

"They slough it off so badly," Tobin said of doctors' tendency to diagnose Lyme disease. "It's your nerves, or you need to get out more, it's Epstein-Barr, maybe it's chronic fatigue syndrome."

Diagnosing the elusive disease can be as frustrating for doctors as for patients.

"People get labeled as having Lyme disease or hear all this publicity and say, 'Oh, I have a pain in my leg --it must be Lyme disease,'" said Dr. Eugene Shapiro, a pediatrician with the Yale School of Medicine, who helped develop new treatment guidelines on behalf of the Infectious Diseases Society of America. "If you try to say it's not Lyme disease, they get angry because they think you're saying they don't have the symptoms."

The soon-to-be-published guidelines will recommend treatment of 14 to 21 days for most Lyme cases and as long as 28 days for the more serious Lyme arthritis. If symptoms persist, the patient may be treated with a second course of oral or intravenous antibiotic therapy.

The recommendations will state that there is no convincing published evidence that repeated or prolonged courses of antibiotic therapy are effective for chronic Lyme patients, but also will note that there are studies in progress, said Gary Wormser, who led the work on the guidelines.

The National Institutes of Health is sponsoring the first long-term study to explore whether extended antibiotic therapies help chronic Lyme disease patients. The $4 million study began about three years ago and probably will extend several more years.

"These are people who have had the usual standard treatment for early Lyme disease, been cured, then months or years later the symptoms come back," said Phillip Baker, the Lyme disease program officer for NIH's National Institute of Allergy and Infectious Diseases. "We can't tell whether they were reinfected or whether the symptoms come back."

Doctors believe that some patients who suffered from Lyme disease may have a residual reaction caused by the bacteria's interaction with body tissue. The reaction may persist even after the bacteria are eradicated, but it would not be helped by antibiotics.

"You really don't want to use antibiotics unless you clearly have evidence of an infectious disease," Baker said. "People have had to have their gall bladders taken out because of overtreatment of antibiotics."

A recent inquiry by Sen. Rick Santorum, R-Pa., underscores the debate surrounding Lyme disease.

In a letter to the Pennsylvania State Board of Medicine, Santorum said his office has received questions from Lyme disease patients who were concerned that physicians who treat the disease aggressively might find themselves under increased scrutiny by state medical boards. Some patients charge that insurance companies that have financial incentives to avoid long-term antibiotic therapy are bringing the complaints.

"A number of physicians in New York and New Jersey, for example, who treat large numbers of cases of Lyme disease have in fact been investigated by their respective State Board of Medical Examiners already," Santorum wrote.

Santorum and Sen. Chris Dodd, D-Conn., also asked the General Accounting Office to review the U.S. Department of Health and Human Services' Lyme disease programs and report back within six months. The two senators have introduced a bill that would establish a five-year, $125 million initiative to improve Lyme disease detection and prevention, as well as public and physician education about the disease.

The state's response to Santorum's letter reflects health officials' uncertainty over diagnosis and treatment.

In an April 26 letter, Dorothy Childress, commissioner of Pennsylvania's Bureau of Professional and Occupational Affairs, said the bureau does not keep statistics on ailments that prompted particular complaints against physicians.

But she added that anecdotal responses indicate that there may have been "one or two such complaints in recent years," which were closed without action by the prosecution division due to lack of consensus in the medical community on the appropriate standard of care.

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