Lyme disease: Treatment controversies continue

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Lyme disease was first recognized a mere two decades ago, yet an orthodoxy has developed around its treatment. It goes roughly like this: People with LD are cured with a four-week course of antibiotics; if not, they probably never had LD. This conventional medical wisdom was challenged at a recent press briefing held in New York City and sponsored by the Lyme Disease Foundation of Hartford, Connecticut.

Too many people given the standard antibiotic treatment continue to have symptoms of LD, and no clinical trial has been conducted to determine the correct dosage and methods for treating those whose symptoms persist. To fill in some major information gaps, the Lyme Disease Foundation has designed a study. Martina H. Ziska, M.D., the Foundation's medical director, announced that the trial will determine whether antibiotics should be given to chronically infected people for one month or longer and whether the drugs should be given orally or intravenously. It is expected to take place at several academic medical centers in New England, New York, and New Jersey, all areas hit hardest by LD.

When numerous cases of an arthritis-like illness started showing up among children living in Old Lyme, Connecticut, they were initially thought to be juvenile rheumatoid arthritis. The predominant symptom was swollen, painful joints. As time went on, however, doctors learned that the disease is a bacterial infection resulting from the bite of an infected tick.

The infection, caused by a spirochete called Borrelia burgdorferi, is carried to humans via tiny ticks that feed on animals, such as white-footed mice and white-tailed deer. It produces flu-like symptoms, such as fatigue, musculoskeletal pain, fever, and headache. If not treated properly, LD can affect various organ systems at the same time with devastating effects, such as facial paralysis, depression, dementia, and memory problems. Some of the damage can be permanent.

The diagnosis and treatment of LD presents numerous hurdles. People can be bitten by a tick without knowing it, and even when the bite is noticed, all ticks are not infected. The red circular rash around the bite, the telltale sign of an infected tick, does not always appear. Furthermore, LD symptoms mimic other diseases, such as fibromyalgia and multiple sclerosis, and no test can reliably identify the presence of Borrelia burgdorferi.

After LD received considerable media attention ('Tick Terror!!") in the late 1980s, some doctors began to suspect that the disease is over diagnosed because its prevalence is overestimated by physicians and the public alike. Studies published in the early 1990s show a significant number of the people treated for Lyme disease did not have the disease.

Many of these people were given intravenous antibiotics unnecessarily, risking complications, which can be especially dangerous to children. One study shows that 14 children had to have their gall bladders removed and 22 endured bloodstream infections because of complications from long-term intravenous antibiotic treatment. Nearly 60% of children diagnosed with LD didn't have it, according to a 1993 study conducted by pediatric rheumatologists.

Initially, the treatment controversies centered around the wisdom of giving antibiotics immediately after a tick bite and before any sign of LD occurs. (See HealthFacts, October 1992.) Then there's the perennial question of who exactly has LD. Now the debate has expanded to include the long neglected needs of people whose symptoms persist despite the standard four-week course of antibiotics.

In a telephone interview, Dr. Ziska explained that researchers have concentrated their efforts thus far on people with early signs of LD. "All the studies show treatment failures, even at this stage of the disease," said Dr. Ziska. 'There is no drug which would be 100% effective in treating the earliest, least complicated stage of LD, and there are no treatment regimens for disseminated or chronic stages of LD."

Interestingly, the medical dogmatism about LD treatment is strongest concerning the latter area where there is virtually no information. Many doctors take a dismissive attitude toward people whose symptoms persist beyond the standard four-week course of antibiotics. When pressed for an explanation, Dr. Ziska said that this attitude can often be found at teaching hospitals where academic physicians tend not to follow up on people whose symptoms persist following four-week treatment, and such people tend to turn elsewhere when not helped.

"There is tremendous controversy over treatment, and until we have good studies, it will not be resolved," said Dr. Ziska, whose Foundation advocates an open-minded approach to LD.

The Lyme Disease Foundation study of treatments for chronically infected people is expected to begin shortly.

For More Information
Call the Lyme Disease Foundation at (800) 886-LYME. Request a free brochure on the prevention, diagnosis, and treatment of LD. The Hotline will refer callers to local support groups and to doctors who are knowledgeable about LD. To get on the referral list, physicians must regularly attend educational conferences.

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