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Lyme Disease Not a Life Sentence

Quality of life improves over time for those bitten, study says

MONDAY, Oct. 28, 2002 (HealthDayNews) -- There's good news for people who have been infected with Lyme disease: Their quality of life is likely to improve over time.

That's the conclusion of the 12-year follow-up from the Nantucket Lyme Disease Cohort study, which is being presented today at the American College of Rheumatology's annual meeting in New Orleans.

"The goal of the study was to determine the clinical and functional outcomes of persons with prior Lyme disease 12 years after infection," says Dr. Nancy Shadick, lead author of the study and a rheumatologist at Brigham & Women's Hospital in Boston. "On average, 12 years after infection, we found no impairment of quality-of-life measures. Subjects did still complain of memory and fatigue problems, but it was not reflected in functional status."

The results are not surprising to other experts in the field.

"There have been numerous follow-up studies that indicate that long-term outcomes for Lyme disease patients are excellent with very, very rare exceptions," says Dr. Eugene Shapiro, a professor of pediatrics, epidemiology and investigative medicine at Yale University School of Medicine. "There are a number of other studies now that have looked at long-term outcomes, and for the most part people who have had Lyme disease are no different than those who didn't in terms of long-term outcomes."

This information has only started trickling in recently, however. For a long time, physicians have been unsure what the long-term prognosis is for victims of the tick-borne disease.

"Lyme disease gets better with antibiotic treatment but 20 to 30 percent do not recover fully. They will have lingering symptoms, such as joint pain and memory difficulties," Shadick explains. "That raised concerns whether people ever actually do recover, so the cohort was established to determine whether recovery occurs."

In 1993, Shadick and her team started assembling a group of about 350 individuals from Nantucket Island, off the coast of Massachusetts. Half had had Lyme disease and half had not. The prevalence of Lyme disease on Nantucket is about 14.3 percent, one of the highest reported incidences of the illness in the country.

The group of individuals was first assessed six years after they had contracted Lyme disease. At that point, people who had had Lyme disease had no more musculoskeletal, neurological or neurocognitive abnormalities than the healthy people did. Although people had generally recovered, quality-of-life questionnaires revealed that many of the participants who had had Lyme disease reported not being able to perform daily activities without difficulties such as pain.

Those results were published in the December 1999 issue of Annals of Internal Medicine.

Now, at 12 years after the initial infection, physical exams and neurological tests again exposed no differences in the two groups of participants.

Although Lyme disease patients still complained of fatigue and memory difficulties, the quality-of-life measurements had improved in the group who had had Lyme disease to be no different than those of people who had not been sick.

"This tells us that people do get better slowly," Shadick says. "Health-related quality-of-life improves over time with Lyme disease."

As for the continued complaints, no one is quite sure. "I think the explanation is in part because of all the publicity about Lyme disease," Shapiro says. "There's a certain bias. Once you're labeled as having Lyme disease, you're more likely to notice and/or report any given symptom."

What To Do

For more information about Lyme disease, visit the American Lyme Disease Foundation or the U.S. Centers for Disease Control and Prevention.

SOURCES: Nancy Shadick, M.D., rheumatologist, Brigham & Women's Hospital, and assistant professor, medicine, Harvard Medical School, Boston; Eugene Shapiro, M.D., professor, pediatrics, epidemiology and investigative medicine, Yale University School of Medicine, New Haven, Conn.; Dec. 21, 1999, Annals of Internal Medicine; Oct. 28, 2002, presentation, American College of Rheumatology annual scientific meeting, New Orleans
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