Log Cabin Democrat Features: Medical community split on Lyme realities 6/22/97

Published Sunday, June 22, 1997

Sunday, June 22, 1997Medical community split on Lyme realities

Last modified at 10:35 p.m. on Saturday, June 21, 1997

By BOB BUCHANAN

Special to the Log Cabin

Cindy Goode knew the variety of her symptoms meant Lyme disease, but a doctor she consulted thought otherwise.

The physician told the 29-year-old Conway pharmacist, "We have Lyme disease in Arkansas, but only dogs get it."

"Then should I see a veterinarian?" she shot back.

There was no reply.

After consulting six or seven doctors -- she can't remember which -- a New York doctor diagnosed Lyme disease.

From all of this, Miss Goode has developed a jaundiced opinion: "Lyme is a political disease."

The medical community is fractured at the very least. Some physicians deny the disease exists, saying victims are hypochondriacs. Others see it as a short-term disease, others as a chronic long-term disease. And a small group of Lyme disease victims call the situation a medical conspiracy.

Misdiagnoses

Unlike most diseases, the one consistency of Lyme disease symptoms and treatment is its idiosyncrasies. It acts in so many ways in so many patients.

One medical camp sees Lyme as a short-term, 30-day disease and the other camp sees it as an acute and chronic disease, often requiring six months or more to help victims get back to some degree of normalcy.

Yet, it was the "concern of mothers" about health problems their children suffered that initiated the attack on Lyme in 1975, according to Polly Murray, author of "The Widening Circle."

She said she and other mothers around Lyme, Conn., went to the Connecticut Department of Health about unusual problems affecting their children. Mrs. Murray, who spent 20 years gathering material for her 296-page book on Lyme disease and its affect on a family, said the health department then contacted Yale University in New Haven where Dr. Allen C. Steere began his investigation.

Conflicting treatments

As a result, Dr. Steere became the first to medically report tick-induced Lyme arthritis. He believes the spirochete injected by the deer tick is treatable with antibiotics, requiring about a month's time.

Journals report Dr. Leonard H. Sigal of the University of Medicine/Dentistry of New Jersey, advocates oral antibiotics for a month, saying higher doses and longer treatment are unnecessary.

Physicians in the short-term camp believe symptoms, after curing Lyme disease, constitute "post-Lyme syndrome." Thereafter, patients should be treated by specialists for that particular disorder.

However, at the 1992 international Lyme conference in Arlington, Va., Dr. Steere modified his earlier position. He told the audience he sometimes gives a second month of intravenous antibiotics.

Physicians in the long-term camp theorize when the Borrelia burgdorferi (Bb) spirochete has spread throughout the body it cannot be eradicated completely under today's medical technology. Only when the infection is caught early can it be killed. In long-term patients, the disease can be driven into remission, only to reappear again, sometimes years later, having migrated to another area of the body.

Leading long-term Lyme disease doctors, such as Ken Liegner in Westchester County, N.Y., and Joseph Burrascano Jr. on Long Island, treat the total symptoms of Lyme patients similar to general practitioners. Part of their treatment is intravenous antibiotic therapy. Treatment continues if subsequent tests and symptoms indicate the spirochete still is present.

Dr. Liegner was the first physician to diagnose Lyme disease in Cindy Goode. Six months later he came to the same conclusion about her father. He said all of Dwayne's tests did not meet all of the Centers for Disease Control and Prevention's criteria as reportable Lyme disease. Cindy's tests did.

This dichotomy in treatment of Lyme extends all the way to the federal government. Proponents of long-term aggressive therapy contend more studies are needed. On the other hand, Dr. Sigal would like to see studies that prove the long-term contention. He doesn't think they exist.

Dr. Charles Crist of Springfield, Mo., a long-term treatment advocate, said there are more than a dozen positive cultures -- the ultimate proof of infection -- after extensive antibiotic treatment.

To this, Thomas Forschner, executive director of the Lyme Disease Foundation in Hartford, Conn., adds researchers can't get grants for studies to prove long-term therapy, but studies to prove short-term therapy can obtain grants.

Delay in testing

Tick-borne infections cannot immediately be tested to determine if the Lyme spirochete is present. Within days or weeks of being bitten, a bull's-eye rash may appear, but does so less than half the time. Flu-like symptoms may follow as the corkscrew spirochetes multiply throughout the body.

Only months later can tests be administered. By then the bacteria has spread. Estimates range from 10 percent to 30 percent false negative tests. No test is certain.

Treating Lyme disease is expensive and most health insurance companies tend to side with the short-term approach. At that point, patients are treated for other ailment symptoms, ranging from cardiovascular diseases to Bell's palsy, to receive health insurance coverage.

Burden on doctors

Because of the lengthy and wide-ranging treatment of patients with Lyme disease, physicians in Connecticut and Michigan have been brought before state medical boards on charges of over diagnosing and over treating Lyme.

On the other hand, a number of weary patients who have shifted from doctor to doctor for years for various diseases before being diagnosed with Lyme disease have filed malpractice lawsuits against physicians.

Dr. Liegner says he spends at least two hours -- others take four hours -- during an initial fact-finding session with a patient. Tests may follow.

"Doctors are so busy practicing managed care they don't have time to learn," said Cindy Goode. It's hard to find a doctor brave enough to take time to understand Lyme disease."

"Not one doctor in Arkansas can diagnose it," Dwayne Goode says with conviction.

The result, Goode continues, is most doctors never want to hear the words -- Lyme disease. It bodes ill for a doctor's practice one way or the other. For sufferers of the disease, Cindy says, "Their life is in a fog."

A good example of medical disparity on Lyme disease is the CDC criteria for Lyme disease.

The first tick-enduced rash in the U.S. was reported in 1970. Dr. Steere described Lyme arthritis in 1977 and other Lyme discoveries followed. It wasn't until 1982 that CDC required reporting of Lyme as an infectious disease.

Dr. Burrascano told a Senate committee hearing on Lyme disease in 1993 that Lyme is the second fastest-growing disease in the U.S. behind AIDS.

Dr. Dennis said CDC issued the reporting of Lyme findings as "recommended." He said states must set their own reportable standards. Dennis Berry, Arkansas Department of Health epidemiologist, said the state strictly follows CDC reporting requirements.

However, Cindy Goode said Arkansas has not established Lyme reporting requirements, which she said is in the province of the state legislature.

As Arkansas reporting exists, Cindy is counted as a victim of Lyme disease, but not her father. However, both know they have it.

In 1994, the Arkansas Department of Health reported 15 cases of Lyme disease, down from a high of 31 in 1991. Twelve cases were reported in 1995 under the new CDC recommendation. Ms. Goode contends most cases go unreported because "many doctors don't want to bother."

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