Testing Protocol For 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 test. 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.”

Lyme Disease