Study finds Lyme disease tests unreliable

By STEVE NERY

Staff Writer

December 29, 2005

BALTIMORE — A Johns Hopkins University School of Medicine study reinforces what many people familiar with Lyme disease have been saying for years — existing testing methods are not accurate for detecting the disease in its early stages.

Lyme disease, named after the Connecticut town where it was discovered in the ‘70s, is caused by bacteria generally transmitted to people by deer ticks, although it can be carried by other insects and mammals as well.

If not properly treated, Lyme disease can lead to major chronic problems, including severe arthritis, fatigue, fever, headaches, and muscle and joint pains, according to the Centers for Disease Control. Ultimately, untreated Lyme disease can kill.

In the early ‘90s, fewer than 10,000 cases were reported annually nationwide. In the past few years, the number has hovered at and above 20,000, according to the CDC, the vast majority of which were reported in June, July and August.

There were 891 reported cases of the disease in Maryland in 2004, according to the Maryland Department of Health and Mental Hygiene.

Different studies have estimated that for every case reported, however, between four and 12 cases go unreported.

Hopkins doctors performed different tests in samples from 86 people with Lyme disease symptoms in 2001 and 2002, but did not release the report until recently. They determined some tests to be wholly ineffective, while combinations of other tests proved more successful.

“Although the laboratory testing for diagnosis of Lyme disease is improving, the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests,” the Hopkins report concludes. “Thus, clinical suspicion based upon well-recognized cardinal features of Lyme disease is still the most appropriate approach.”

The virus’ trademark symptom is a bullseye-shaped rash, which can appear anywhere within a month after the bite. The CDC says the rash shows up in only 68 percent of those diagnosed with Lyme disease, however, while others’ only symptoms may be headaches, pains, fatigue, chills or fever.

Many people who come down with Lyme disease do not recall being bit — about half, according to the International Lyme and Associated Disease Society (ILADS). Further complicating the matter, the disease’s symptoms often mimic those of other illnesses, earning it the nickname “the great imitator.”

The World International Lyme Disease Emergency Rescue (WILDER) Network, consisting of doctors and Lyme disease educators, lists 48 illnesses Lyme disease has been misdiagnosed as on its Web site,www.wildernetwork.org.

Because of this, people such as Lucy Barnes, founder of the Lyme disease education organization “After the Bite,” do not have faith in many doctors’ ability to clinically diagnose the illness or provide proper treatment. Barnes, who was misdiagnosed herself in the early ‘80s, has helped thousands of others who have also been misdiagnosed find proper treatment for nearly two decades.

Barnes said she would like doctors — including those at Hopkins — to gain a better understanding of the disease’s many facets as well as the importance of early treatment.

For instance, on Hopkins’ online reference for Lyme disease, last updated in June, editor-in-chief Dr. John Bartlett’s comments contradict those of several other organizations, including the CDC.

“Patients with chronic fatigue, joint stiffness and/or muscle aches should not have Lyme disease serology (blood tests) and should not receive Lyme disease treatment,” Bartlett’s post reads.

Barnes, who is also working with doctors and the Maryland Department of Health and Mental Hygiene to attempt to establish Lyme disease treatment guidelines, advises anyone who suspects they may have the disease to contact the Lyme Disease Association at 1-888-366-6611 or to visitwww.lymediseaseassociation.org or www.ilads.org.