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June 22, 2000

The News & Observer

Lyme disease


Elizabeth Jordan knew she had Lyme disease. As a Raleigh veterinarian, she had diagnosed the stiff joint and fatigue-producing disease in her own dog a month before. Now that she was exhibiting similar symptoms, the challenge was to get a physician to believe that she could have contracted it, too.

Over four months, Jordan saw more than half a dozen doctors and underwent several treatments. She was diagnosed with everything from a virus and arthritis to fibromyalgia and chronic fatigue syndrome, anxiety and depression. One doctor tried to put her on muscle relaxants and antidepressants. Another told her that he didn't believe Lyme disease existed in North Carolina.

Still Jordan, a tall, thin and determined woman, persisted. "I had diagnosed my dog with it, and I knew my family history and I just knew the way I felt," she says confidently. "I just had a gut instinct that I had Lyme disease."

In many ways, Jordan's story represents the confusion surrounding Lyme disease. First recognized in the United States in 1975, Lyme disease is transmitted by ticks that pick up bacteria from small mammals such as infected deer and rodents. It has a wide range of symptoms, from fever and fatigue to headaches and some similar to arthritis, and has puzzled doctors from the start. Though commonly recognized as a threat in the Northeast, Lyme disease is thought to be rare in the South. Diagnosis is difficult because the body can take weeks or months to build up enough antibodies to detect by blood test. And the ticks that carry the disease vary by region.

"The deer tick doesn't do the same thing in the Southeast as it does in the Northeast," says Raleigh entomologist Barry Engber. Unlike northern deer ticks, which are plentiful and feast on Lyme-infested rodents before passing the disease to humans, North Carolina deer ticks are more finicky. They prefer snakes to mice and rarely are thought to bite humans. "Down here they don't tend to go on the mice that much and they definitely don't in these small stages go on to people. It just doesn't seem to play that role in the South," Engber says.

While Engber believes the risk of contracting Lyme disease is relatively low in North Carolina, he doesn't rule it out.

"There is obviously something in the way of Lyme disease here," says Engber. Perhaps Lyme, or a Lyme-like illness, is transmitted through a different species of tick or a different strain of the Lyme bacteria circulates in the South. "We just don't know."

Such uncertainty creates a conundrum for patients, who may spend months and years before landing a proper diagnosis.

"The problem is that many people travel up north or have moved here from there, and they could be misdiagnosed simply because doctors aren't looking for it," says Karen Angelichio, a registered nurse at the Duke International Travel Clinic in Durham. "You can't say that just because of where you reside you can eliminate the possibility that you have Lyme's."

"True Lyme disease is a fairly uncommon disease in North Carolina," asserts Dr. Newt MacCormack, head of the state's general communicable disease control division. "Not to say that there are not some occasional cases of it," he says. Eight cases have been reported in North Carolina this year.

Instead, MacCormack and other public officials say North Carolina residents are much more likely to contract tick-borne illnesses such as Rocky Mountain spotted fever or ehrlichiosis. Part of the reason, he says, is that the American dog tick and the Lone Star tick, primary carriers of these diseases, are much more plentiful here. Reported cases of Lyme disease vs. Rocky Mountain spotted fever would seem to bear that out. In the past five years, there have been 329 cases of Lyme disease; 715 cases of Rocky Mountain spotted fever.

But people like Dr. Kenneth Liegner, a noted Lyme disease specialist in New York who believes that Lyme cases are underestimated in the South, say the system of reporting is flawed. Centers for Disease Control and Prevention reporting guidelines say a Lyme disease diagnosis requires the characteristic bulls-eye rash or specific involvement of the musculoskeletal, nervous or cardiovascular system and a positive blood test.

Liegner believes those rules mean physicians miss a lot of cases. "There are hundreds of strains of the Lyme's organism," Liegner says. A typical Lyme's test screens only for one.

Furthermore, only half of infected people develop a rash. And Lyme disease can mimic other illnesses and viral infections such as the flu, mononucleosis, rheumatoid arthritis, fibromyalgia and multiple sclerosis.

It's not a perfect system, admits Dr. Karen Becker, a CDC epidemiologist with the state. But she still believes that Lyme disease is overdiagnosed in the South. She points to the fairly recent discovery of a Lyme-like illness as part of the problem.

Called Southern tick-associated rash illness, or STARI, the illness is transmitted by the Lone Star tick - not deer ticks - and can cause a rash, low-grade fevers and general malaise often associated with Lyme. (A cluster of STARI cases was reported in Chatham County in 1995.) STARI is treated with antibiotics, and symptoms generally go away in a few weeks.

It does not invade the heart, muscle or nervous systems as in true Lyme cases. "So it could be we're thinking it's Lyme disease, and it looks like Lyme disease, but it's really something different," she says.

Jordan believes such comments miss the point. "Even if what some people do get is a Lymelike illness, as far as the Lyme specialists are concerned, what they're seeing is it causes all of the same late problems. So it doesn't matter."

In retrospect, Jordan believes her troubles began in fall 1998 after a hike with her dogs along her rural Franklin County property. The day after the hike, Jordan removed what she recognized as a Lone Star tick from her thigh.

An avid hiker and outdoorsman, Jordan didn't think much of it until a month later when her 2-year-old pup began having stiffness and pain in his legs. Jordan ran a blood test. It came back positive for Lyme disease.

A month later, Jordan noticed a similar stiffness in her hands, followed by the gradual onset of a low grade fever, insomnia, fatigue and pain in her lower back - all common symptoms of Lyme disease.

Jordan never saw a rash, but by the end of April, the pain in her hands had moved into her feet, neck, knees and shoulders.

It would be strange to contract Lyme disease from a Lone Star tick because the disease is usually transmitted by a deer tick. "But I have always believed that any tick can transmit anything," Jordan says. "There were days when I was working where I was hurting so bad that I would sit in my car during lunch and cry."

In April, she went to the doctor. At her suggestion, the doctor ran another Lyme blood test. It was negative. To protect against a possible infection, the doctor put Jordan on antibiotics, the same treatment used to treat Lyme. But the pain persisted. Specialists, tests and evaluations followed to rule out fibromyalgia, chronic fatigue syndrome, tuberculosis, AIDS, multiple sclerosis and syphilis. All eventually proved negative. Doctors suspected some strange infection or virus.

Meanwhile, Jordan grew increasingly isolated at work and home. "You don't always look sick when you have Lyme disease," she says, echoing the frustration of many patients with Lyme disease. "People around you get tired of hearing how bad you feel and you get tired of saying how tired you feel."

Finally, an acquaintance who had been diagnosed with Lyme disease recommended that Jordan seek the help of Liegner, the specialist in New York. After more specific tests and exams he confirmed that she had Lyme disease.

Back home, Jordan began a 10 month course of antibiotics and slowly began to get better. To improve mobility and manage her symptoms, Jordan does aerobics five times a week - increased body temperature and oxygen flow are thought to kill remaining bacteria.

Jordan makes it a point to talk up tick protection and detection with everyone she knows.

"Whether it's prevalent or not, it's out there," Jordan says. "I don't want anyone else to go through what I've been through."

There are several types of ticks and tick-borne diseases in North Carolina. Here are three of the most serious.

Deer tick: Known to transmit Lyme disease in Northeastern states, but is less likely to transmit the disease in North Carolina.

American dog tick: Common in North Carolina. The dog tick is the one most likely to transmit Rocky Mountain Spotted fever.

Lone Star tick: Very common in eastern North Carolina. The Lone Star tick is most likely to transmit ehrlichiosis and thought to transmit a Lymelike illness called the Southern tick-associated rash illness.

Copyright 2000 by The News & Observer Pub. Co.