TICK, TICK, TICK...

By Christine Gorman

Joseph Dipaoma, 58, of Bedford, N.Y., never saw the pinhead-size tick that bit him. But there was no mistaking the angry red rash that blossomed on his forearm. He had Lyme disease, which three weeks on antibiotics quickly cured. Still, five years later, he sometimes wonders if the infection is really gone. "I get a lot of aches and pains," says the part-time delicatessen worker. "In the back of my mind, there's this question: Could it be a residue of the Lyme? Or have I been standing behind the counter too long?"

Twenty years after the first cases of Lyme disease were reported in and around Old Lyme, Conn., the epidemic of tick-borne infections seems to be taking a detour into the twilight zone. Doctors know how to diagnose it--most of the time. They can even cure it--most of the time. Pharmaceutical companies are working on two promising vaccines that could be approved by the U.S. Food and Drug Administration later this year. Biologists have even come up with some ingenious methods for controlling the tick population that carries Lyme. But no one is satisfied, not the victims who complain that their symptoms seem to persist, not the doctors who are called upon to treat those victims, not the scientists who are being asked to solve a medical mystery that no one has been able to define clearly. There are now so many mixed messages about exactly what Lyme is and how it should be treated that many people are left, like DiPaoma, wondering what to believe.

The battle lines are deeply drawn. Taking a page from AIDS activists, several advocacy and educational groups are insisting that, among other things, they be consulted in the design of scientific studies of Lyme. Their input has not been entirely welcomed by the scientific community. One outspoken program officer at the National Institutes of Health was so vociferous in his criticism of the Lyme groups that he was barred from having anything more to do with the disease. His cause was taken up three weeks ago in an op-ed piece in the New York Times that criticized the lay groups and pleaded with them to "let scientists do their job."

A few facts are clear. Lyme disease is caused by one of a group of corkscrew-shaped bacteria called spirochetes. It is spread when infected deer ticks, or other members of the genus Ixodes, bite their potential hosts, which include field mice, wood rats and suburbanites. Lyme has become endemic in the Northeastern U.S. It has also been found in Canada, Europe and Australia. The initial infection is usually accompanied by an expanding red rash, which generally, but not always, resembles a bull's-eye. Caught early enough, the Lyme infection can be completely cleared by taking oral antibiotics.

Things quickly get tricky, however, when you focus on the anomalies. Sometimes the disease isn't caught soon enough. Sometimes the spirochetes invade the nervous system, which is beyond the reach of most oral medications, in which case they must be flushed out with antibiotics that are administered intravenously. Everyone agrees that such complications occur. But some people think they are the exception, while others believe they are the rule.

The debate gets downright vicious when the subject turns to "chronic Lyme disease," a catch-all term that means different things to different people. Some patient advocates and their medical allies believe the Lyme spirochete tends to persist in the body even after standard antibiotic treatment. This camp generally favors intravenous antibiotic therapy to treat chronic Lyme. On the other hand, some academic researchers and their allies argue that people with chronic Lyme fall into one of two categories: they either have hypersensitive immune systems that have overreacted to an earlier, no longer viable, Lyme infection--in which case antibiotics are useless--or they never suffered from Lyme disease in the first place and are ascribing to Lyme various aches and pains that actually have nothing to do with the disease.

This difference of opinion has significant implications for treatment. Intravenous antibiotics can cost tens of thousands of dollars, especially if hospitalization is required. Moreover, there is a risk that the catheters used to administer the drugs may become contaminated, leading to serious infections of the bloodstream and even the heart. Clearly, intravenous antibiotics should not be withheld from people who truly need them. Who truly needs them is, of course, what's in dispute. The NIH is funding a $4.5 million study in an effort to sort out both the best definitions and the best treatments for chronic Lyme disease.

Meanwhile, a group of biologists in central Texas may have come up with at least a partial solution to the Lyme problem. "We call it the four-poster," says John George, a tick specialist with the U.S. Department of Agriculture in Kerrville. It's a bin full of corn surrounded by specially angled rollers. As deer push in to eat the corn, the rollers coat the animal's head and neck with a pesticide that targets mites and ticks. Pilot studies on 50-acre plots have produced a 95% drop in the local tick population. "What's neat about this is that it's safe for the deer and doesn't involve wholesale spraying," George says. "We're hoping to try this out very soon in the Northeast." It may not seem very sophisticated to the folks in Old Lyme, but at least it targets ticks and not people.