Some Lyme disease patients have symptoms that can linger for years despite standard treatment. Scientists are puzzling over how that can be
By Beth Daley
August 18, 2013
Brandi Dean wanted to slink home. Her husband had rushed her to a Boston emergency room for severe vertigo, confusion, and a bizarre weakness on her right side, but neurological and other tests had yielded nothing. Maybe, a doctor suggested gently, it was a panic attack.
“I was so embarrassed,” said the soft-spoken Dean, who left Beth Israel Deaconess Medical Center wondering whether the stresses of being a mother of two young sons had caused her to become so sick. She was still reeling from the experience a week later when her phone rang. One of her lab tests had come back positive — for Lyme disease.
Doctors put the 36-year-old South End woman on three weeks of antibiotics and Dean immediately began to feel well. But when the medication ended, so did her better health. Abruptly, Dean was catapulted into one of the most contentious debates in medicine today: Why do up to 25 percent of people treated for Lyme disease report lingering symptoms, lasting from days to years?
“This is a huge question, said C. Ben Beard, chief of the Bacterial Diseases Branch of the US Centers for Disease Control and Prevention. “We really need to understand what is going on.”
Many Lyme sufferers and activists, and some doctors are convinced that the bacteria that cause the disease can, especially if not caught early, evade antibiotics and the body’s immune system by burrowing into joints, the nervous system, and other tissue to wreak sustained havoc.
Most infectious disease specialists, however, say there is a lack of convincing evidence for this persistent infection and that a month or less of antibiotics usually knocks the disease from the body. They suggest other causes: another illness or reinfection through a second tick bite. Or patients may have a syndrome triggered by Lyme that causes long-term fatigue or pain.
Underlying the emotional impasse is this simple fact: Lyme bacteria have rarely been found in patients after a cycle of antibiotics. Lyme tests look not for the bacteria but for antibodies, which the immune system makes to attack the microbe. Now researchers are looking more intensely for the bacterium itself in people, hoping to resolve whether the organism, or some remnant of it, makes some people sick.
No one disputes that many people remain ill after they should have been free of symptoms. A conservative estimate suggests there could be more than 5,000 people in Massachusetts alone experiencing these lingering problems each year.
That number includes only people who get positive or probable test results using CDC diagnostic criteria; Lyme activists say there are thousands more people who are missed because the government’s criteria are too narrow.
Many patients say they find relief by taking antibiotics for months or even years, which they see as further evidence they have a persistent bacterial illness. The medical establishment frowns upon the practice, however, because it says there is no proof long-term therapy helps, and it can harm patients and society, by fostering the emergence of antibiotic-resistant pathogens. Many insurers, in turn, refuse to pay for extended dosages of the drugs.