Some Lyme disease Web sites misinform - study

People who turn to the Internet with questions about Lyme disease may come away with as many wrong answers as right ones, a study of 19 Web sites suggests.

According to researchers at the University of Connecticut Health Center, nine of the Web sites they analyzed gave inaccurate information on at least two key elements of Lyme disease, a bacterial infection transmitted by certain ticks.

The problems included flawed information on such basics as diagnosis, treatment and the potential for long-term complications, according to findings published in the Pediatric Infectious Disease Journal.

Lyme disease has long been the subject of controversy, with some patient advocacy groups and doctors arguing that long-term complications from the infection are common, and that, accordingly, prolonged use of antibiotics is often necessary. Medical research, however, has not supported those contentions, noted Dr. Henry M. Feder, one of the co-authors of the new study.

Still, he and colleague Dr. James D. Cooper found, such (mis)information was readily available on several of the sites they studied—particularly those with the word “Lyme” in the title.

“The problem,” Feder told Reuters Health, “is that some of these sites may have had an agenda other than education.”

In particular, some sites “make the unusual seem common,” said Feder, referring to the long-term health problems that sometimes arise with Lyme disease—such as recurrent arthritis.

In the U.S., Lyme disease is seen mostly in the northeastern and north-central states—where it is transmitted by deer ticks infected with the bacterium B. burgdorferi—and on the Pacific Coast, where it is transmitted by western black-legged ticks carrying the same bacterium.

In most cases, the first sign of Lyme disease is a red, slowly expanding rash that has a clear center, making it resemble a “bull’s eye.” Symptoms such as fatigue, fever, headache, stiff neck, and sore muscles and joints typically arise at this point.

If the disease is not treated with antibiotics, some people may, weeks to months later, develop complications including arthritis, nervous system conditions such as facial paralysis and inflammation around the brain, and, rarely, cardiac problems such as an enlarged heart.

In addition, some patients complain of more vague ongoing symptoms, including fatigue, memory problems and muscle pain.

Compared with the objective complications of Lyme disease—such as arthritis, which most often causes swelling in the knees—the more subjective long-term symptoms are hard to pin on the Lyme infection, Feder said, since problems like fatigue and aches and pains are common in the general public.

In addition, he noted, there is no evidence that any of the lingering problems associated with Lyme disease are the result of persistent infection with B. burgdorferi—making months of antibiotic treatment needless at best. Standard treatment calls for around 20 days of oral antibiotics.

Beyond being unproven in terms of effectiveness, prolonged antibiotic use can be dangerous, Feder noted. When given through an IV, he said, the therapy exposes patients to the risks of infection and blood clots. In addition, any overuse of antibiotics can change the environment of the gastrointestinal tract, and promote antibiotic resistance.

For their study, Feder and Cooper looked at 19 Web sites with general information on Lyme disease. They focused on eight topics, such as managing a tick bite, diagnosis of Lyme disease, treatment and long-term effects. Information was considered inaccurate if it differed from “evidence-based information” like that in guidelines established by several medical societies.

The researchers found that nine of the 19 sites had inaccurate information in at least two categories. Among the errors were statements saying that preventive antibiotics should be given for all cases involving a tick bite, and that antibiotic treatment lasting months to years may be needed for confirmed Lyme disease.

Of the Web sites the researchers studied, the two from government agencies—the Centers of Disease Control and Prevention and the Food and Drug Administration—were deemed accurate, if not all-encompassing. The same was true of the Web site of the American College of Physicians and two academic-affiliated sites.

In contrast, seven of the eight sites with “Lyme” in their titles—something that may imply authority to Internet users—contained flawed information, according to Feder and Cooper. The exception was the American Lyme Disease Foundation.

SOURCE: The Pediatric Infectious Disease Journal, December 2004.

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