Lyme cases double since '92; science hunts for better tests
No test shows active tick-borne disease, but only antibodies, which take weeks to form.
WASHINGTON - Last week's announcement that President Bush had been treated for Lyme disease makes him part of an unfortunate trend: The tick-borne infection is on the rise, with cases more than doubling in the last 15 years.
The good news is that, like Bush, most patients can be cured with a few weeks of antibiotics, especially if they were diagnosed early.
But Lyme's hallmark round, red rash does not always appear or may not be noticed, and other early symptoms are flu-like and vague, so the disease may not be quickly diagnosed. People who aren't treated promptly can develop painful arthritis, meningitis, and other serious disorders.
And a small fraction of patients report pain and fatigue that linger for months or years after treatment.
Do they still have Lyme, or something else? No one knows, although desperate patients try repeat antibiotics despite little evidence they do more good than harm.
The central problem: No test shows when someone has active disease - when Lyme-causing bacteria are alive in the body. Today's tests instead spot infection-fighting antibodies, which can take weeks to form and can linger long after Lyme is gone.
A push is on for better Lyme tests, with parallel hunts getting started by the government and, separately, by patient-advocacy groups angry that modern medicine hasn't found an answer.
"The time is right to take a closer look," says Dennis M. Dixon, chief of bacteria research at the National Institute for Allergy and Infectious Diseases, which plans to gather leading scientists later this year to determine the best approaches. "We would not rule out any avenue."
Brian Fallon, director of Columbia University's new Lyme and Tick-borne Diseases Research Center - funded by the advocacy groups Time for Lyme and the Lyme Disease Association - predicts confidently: "Science is going to bridge the gap."
Among the research:
A newer antibody test seems to indicate when antibiotics are working in early Lyme stages, offering the possibility of tracking treatment response.
Hunting for markers of active infection, including bits of Lyme-related protein in the blood or spinal fluid.
Brain imaging to try to distinguish when Lyme penetrates the nervous system.
About 20,000 new cases a year are reported to the U.S. Centers for Disease Control and Prevention. An agency analysis in June showed the disease continues to be concentrated in the mid-Atlantic and lower New England.
Some of the nation's highest infection rates are in the Philadelphia region: Delaware (76.6 cases per 100,000 people) ranked No. 1 for 2005, the most recent data available; New Jersey (38.6 per 100,000) was No. 3; and Pennsylvania (34.5 per 100,000) was No. 4. Connecticut was No. 2.
The CDC acknowledges these are a fraction of the total, as many cases go unreported. Experts say it may be five times higher and is expected to continue to rise as suburbia expands into the woodland home of black-legged tick species - deer ticks - that carry the Borrelia burgdorferi bacteria.
Overshadowing the treatment success for most patients is debate over what patient groups call "chronic Lyme" and what mainstream doctors, seeking neutrality, call "post-Lyme syndrome."
The two camps became even more polarized as two major medical associations released guidelines in the last year that found no good evidence that long-term antibiotics help lingering symptoms - and warned they could cause serious side effects and spur formation of drug-resistant super-germs.
That's not to say some people aren't sick, the guidelines stress. It's just not clear why.
"I think many have been told they have Lyme when in fact they have something else," said Paul Auwaerter, an infectious-disease specialist at Johns Hopkins. "I can sense, palpably, their frustration."
Furious patient groups say the guidelines prompted some insurers to quit paying for some patients' only relief.
"We are basically sitting on our hands watching this disease expand its ill effect," said Diane Blanchard, co-president of Time for Lyme, "and doing very little except for taking sides - and essentially that's not helping anyone."
The tristate area has some of the nation's highest rates of Lyme disease. Read more at http://go.philly.com/health
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