Patients push boundaries of Lyme disease debate
Date: Thursday, February 21 @ 04:00:00 UTC
Topic: Lyme In The News

Patients push boundaries of Lyme disease debate
News Observer
By Jean P. Fisher, Staff Writer

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

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. 

Laura Tuning of Cary was diagnosed with Lyme disease in December. She was originally told that she was probably just over-fatigued but persisted in her efforts to determine what was wrong with her.
Photo: Staff Photos by Corey Lowenstein

Laura Tuning of Cary was diagnosed with Lyme disease in December. She was originally told that she was probably just over-fatigued but persisted in her efforts to determine what was wrong with her.

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.

Last year, N.C. State entomologists and state public health pest-management scientists discovered what they think may be a previously unknown illness that resembles Rocky Mountain spotted fever. A decade ago, an outbreak of tick-borne illness at an outdoor girls camp in Chatham County helped scientists identify Southern Tick-Associated Rash Illness, or STARI, which resembles Lyme disease. Studies have shown that patients with STARI can register partially positive on blood tests for Lyme.

'Not static'

"This is obviously not static," said Marcia Herman-Giddens, president of TIC-NC, a nonprofit that advocates more research on ticks and the diseases they spread. "There are new illnesses being discovered all the time."

Yet tick-borne illnesses are still not widely diagnosed. Laura Tuning, who lives on the same block as Tierney in Cary, became ill after a tick bite in May, seeking care in an emergency room. No one thought the bite had anything to do with her symptoms. Instead, the mother of three, who had severe body aches and burning sensations in her hands, was told she was likely just overtired.

"I was told to go home and go to bed," said Tuning, who said symptoms flared about two weeks after her tick bite.

She persuaded her primary care doctors to prescribe oral antibiotics, which helped. But when the same symptoms bothered her again in the fall, she sought help from a different doctor who is now treating her for chronic Lyme.

Beth Jordan, a Raleigh veterinarian and president of the N.C. Lyme Disease Foundation, has no patience with doctors who fail to recognize tick-borne illness as a potential threat to patients.

Jordan developed symptoms after a tick bite eight years ago. When no North Carolina doctors took her seriously, she got treatment in New York, where Lyme disease is rampant.

"If you don't want to call it Lyme disease, fine," she said. "It is completely and totally mimicking the symptoms of Northern Lyme, and it responds to the same treatment."

Wide divisions remain in how to treat patients who suspect they have chronic tick-borne illness.

Dr. Jeffrey Engel, the state epidemiologist, said the Division of Public Health encourages doctors to promptly treat acute cases of Lyme or other illnesses spread by ticks.

But he disapproves of broadly diagnosing Lyme disease in patients with nonspecific symptoms, such as fatigue, muscle aches and neurological complaints. He said most patients with advanced Lyme disease are identified by a two-step blood test considered the gold standard for diagnosis. Engel said there is no evidence that newer illnesses, for which there are no diagnostic tests, cause anything but mild illness, though they have been little studied.

"People come to doctors with a broad spectrum of complaints," Engel said. "There is a vast array of causes. Some of these people have Lyme. Most do not."

"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."

This article comes from LymeBlog

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