News & Observer | newsobserver.com | Patients push boundaries of Lyme disease debate

Published: Feb 19, 2008 12:30 AM
Modified: Feb 19, 2008 05:32 AM

Patients push boundaries of Lyme disease debate

Two factions hold opposing views on prevalence of tick-borne disease

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RELATED WEB SITES

Two opposing camps debate the prevalence and severity of Lyme disease.

These sites describe the mainstream view of Lyme:

* Infectious Diseases Society of America: www. idsociety.org/lymedis ease.htm.

* U.S. Centers for Disease Control and Prevention: www.cdc.gov/ncidod/dvbid/lyme.

* Medline Plus (National Library of Medicine): www.nlm.nih.gov/medlineplus/lymedisease.html.

These sites reflect the perspective of 'Lyme-literate' physicians and patients who attribute their illnesses to chronic Lyme disease:

* The International Lyme and Associated Diseases Society: www.ilads.org/.

* Columbia University Lyme and Tickborne Disease Research Center: www.columbia lyme.org.

* N.C. Lyme Disease Foundation: www.nclyme.org/.

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Even as mounting evidence suggests the state may harbor more tick-borne illness than records indicate, patients with symptoms that match Lyme disease say doctors continue to turn deaf ears to their complaints.

They say people are needlessly going untreated or misdiagnosed, leading to advanced illness and even disability.

Dave Tierney of Cary thinks that's what happened to him. Plagued with unexplained fatigue, muscle aches, eye pain and other problems for years, Tierney was diagnosed with multiple sclerosis last year. In June, he left his job as a pilot with Delta Air Lines and began getting long-term disability benefits.

But after researching his symptoms on the Internet, Tierney became convinced he had chronic Lyme disease. An infectious disease doctor and a specialized laboratory test confirmed it. After three months of intravenous antibiotics, Tierney finds his symptoms much improved and he is back at the controls of an airplane.

"I could have been on MS medicine for the rest of my life," said Tierney, who returned to work this month.

Chronic Lyme disease is a controversial diagnosis, hotly debated by two medical camps.

Most mainstream physicians insist Lyme disease is primarily an acute sickness that is easily cured with a short regimen of oral antibiotics. The disease is viewed with particular skepticism among doctors in North Carolina, where fewer than 50 cases are typically recorded each year.

An opposing faction, which includes both Lyme patients and a smaller group of so-called Lyme-literate physicians, argues that the disease is vastly underreported. The faction's adherents contend the spiral-shaped bacteria that cause the disease can literally screw their way into the brain and other organs where they hide from standard antibiotics. This group says Lyme can become a chronic condition and considers it acceptable to diagnose it even when lab tests are inconclusive.

Lyme patients say Tierney's story is not uncommon in North Carolina. They say people made sick by ticks have struggled to get diagnosed and treated, and the climate has turned even more hostile in recent years. In 2006, the N.C. Medical Board disciplined the only infectious disease specialist in the state who routinely diagnosed chronic Lyme and provided long-term treatment with powerful intravenous antibiotics.

Chronic Lyme took a hit last year when the New England Journal of Medicine published a paper arguing that it is essentially an imaginary disease. It was written by the doctor credited with discovering Lyme disease and several other noted infectious disease experts.

Doctors cautious

The paper, coupled with the medical board's action against the Lyme doctor, has made North Carolina physicians even more leery of diagnosing chronic Lyme, said Dr. John Pittman, a North Raleigh physician who treats many Lyme patients.

"You've got a lot of doctors very nervous about anyone thinking that they are doing something outside the box," Pittman said. "Doctors are running scared."

Pittman, who combines traditional medicine with complementary and alternative therapies, often treats Lyme with complicated regimens of oral antibiotics but doesn't use IV drugs. Intravenous therapy is among the most controversial aspects of care because it can lead to serious infection and other complications. He also requires patients to sign a consent form indicating that they understand their treatment departs from typical care.

As more information emerges about the tick-borne illnesses active in North Carolina, even some Lyme patients are beginning to acknowledge that some other disease spread by ticks may be responsible for their symptoms.


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jean.fisher@newsobserver.com or (919) 829-4753

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