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July 8–15, 1999

cover story

Tick Tick

Tiny bug, big trouble: Why the Lyme disease controversy is tearing the medical community apart.

by Stefanie Ramp with Jen Darr

"It’s like I woke up in a Franz Kafka novel and turned into a slug."

That’s how 39-year-old attorney Joel Shmukler describes his life with Lyme disease.

Identifying with Kafka’s character Gregor Samsa may seem a bit extreme, but Shmukler — like many chronic Lyme disease sufferers — truly did experience a painful metamorphosis.

In the early ’90s, Shmukler was honing his skills as an up-and-coming criminal defense attorney in Philadelphia, with clients ranging from a Nigerian robbery suspect to low-level mob figures.

His typical day included a 5-mile morning run, preliminary hearings, trials and bar association meetings. He would head home around 6, get a jump on the next day’s work, perhaps talk on the phone, and maybe sit down to pay his bills.

Now it takes him three days to get his bills paid.

The cluttered state of his Wayne, PA, condo is evidence of his level of energy these days. A kitten calendar tacked to the wall is still open to April. Boxes of medical reports and bags of syringes and IV tubes smatter his living room floor. The shelves are crammed with books about Lyme disease, a host of other medical texts, and tattered paperbacks with titles like Ebola, Outbreak and Congo.

He can usually be found at the computer in his dining room, researching Lyme and keeping in contact with others who have contracted the disease. But that takes energy.

"Any activity you engage in really sets you back," Shmukler explains. "When you have a good day, it can knock you out for a few days or maybe a few weeks." He won’t even schedule doctors’ appointments twice in one week.

Even walking down the grocery store aisle is tough. "I sometimes feel like I am dragging 100-pound weights behind me."

Shmukler says he finds the fatigue the most debilitating of his Lyme symptoms. "Swollen glands, pain, neurological damage, cognitive problems — they obviously can be disabling. But I think I could deal with all of that stuff if it weren’t for the overwhelming and almost consistent fatigue."

All because of a tick bite in the summer of 1994.

Shmukler was not aware that he’d been bitten by a tick — nor could he have known that, with Lyme disease, he was about to enter a world of controversy, pain and confusion.

The tiny deer tick that hosts and transmits the bacterium responsible for Lyme disease is a creature barely larger than the period halting this sentence. Yet it has compromised thousands of lives and instigated an acrimonious rift in the medical community.

Nearly all researchers and clinicians agree on one thing: Early detection and treatment of Lyme disease results in a very high effective cure rate. But they disagree on whether chronic Lyme symptoms, which can be permanent and include joint pain, paralysis, memory loss and other cognitive problems, depression, seizures and sleep disorders, are caused by a persisting infection or are merely the result of a lingering autoimmune response triggered by the disease.

For patients who continue to suffer from Lyme symptoms even after standard treatment, long-term antibiotic therapy offers the best hope. But it’s quite expensive, and because one well-established faction of the medical community denies the efficacy of multiple long-term courses of IV antibiotics, insurance companies have successfully contrived to refuse coverage.

In January, Philadelphia-based SmithKline Beecham introduced the first FDA-approved vaccine against Lyme, promoting the product, LYMErix, with a TV ad campaign. But like everything else connected with this disease, even the vaccine has stirred controversy (see sidebar).

Biologically speaking, Borrelia burgdorferi (Bb), the spirochetal Lyme bacterium, is an admirably crafty organism that can hide in its host’s body escaping eradication and even detection, so most of the medical community, including the Centers for Disease Control and Prevention (CDC), agree that a diagnosis of Lyme should not depend on positive tests. The most common tests are the ELISA and the Western Blot, both antibody tests measuring the body’s reaction, or lack of one, to Borrelia burgdorferi. Although the CDC guidelines for reported cases of Lyme require a positive test, the CDC itself clearly states that its criteria should not be used for clinical diagnosis. Rather, the CDC says, Lyme should be diagnosed based on a doctor’s evaluation of symptoms with the tests providing support.

"From a surveillance standpoint, the CDC has a very strict definition of Lyme disease," explains Dr. Carolyn Johnson, an epidemiologist with the Philadelphia Department of Public Health.

But if tests come up negative for a patient with clear symptoms of Lyme disease, "I don’t think a physician should be dissuaded from treating for Lyme."

According to the Morbidity and Mortality Weekly Report, which is published by the CDC, Pennsylvania has the third-highest number of reported Lyme cases in the country (2,387 in 1998) after New York and Connecticut. Philadelphia logged 178 confirmed cases of the disease in 1998. But Johnson estimates that her department "investigated" up to 900 reports of Lyme, many of which were rejected because they didn’t meet the strict surveillance criteria.

"That’s not to say those people didn’t have Lyme disease," she adds. "They just didn’t meet the criteria."

Despite a substantial faction of doctors and patients who believe in the efficacy of long-term antibiotic treatment for chronic Lyme, old habits are still dying hard — particularly for tradition-bound academicians.

In 1996, an Armonk, NY, internist named Dr. Kenneth Liegner concluded from a study of his own practice that "you’re missing more people than you’re finding if you follow the CDC’s recommendations on how to test for Lyme disease." While Liegner’s study didn’t include a statistically significant number of patients, preliminary information stemming from an NIH study of chronic Lyme disease, using only definitively diagnosed Lyme patients, is finding a similar pattern.

Many doctors, however, believe strongly in the reliability of current Lyme tests.

Dr. Stephen Gluckman, director of clinical services in the University of Pennsylvania Hospital’s infectious disease division, says the tests for Lyme are "wonderfully good."

He believes the real problem is the doctors who are too willing to diagnose Lyme disease.

"There are two types of Lyme doctors — and I’m not saying this in a negative way — there are doctors who are scientific, like me, and there are a lot of self-proclaimed Lyme doctors. We speak two different languages, we have nothing in common."

Many of these "self-proclaimed" Lyme doctors are "truly trying to help their patients," Gluckman says, but "they are wrong."

Instead of helping patients, some doctors are feeding a social phenomenon that exists only in this country, he says — Lyme-related psychiatric disorders. Web sites and support groups also only encourage the phenomenon, he adds.

Indeed, that was one of the early diagnoses given to Joel Shmukler — that his problem was more psychological than physical.

Following his tick bite, he was hospitalized with a high fever that baffled doctors, and later developed a bull’s-eye-shaped rash, a common symptom of Lyme disease. A friend urged him to get tested, but a visit to an infectious disease doctor yielded nothing.

"He rejected the possibility that it could be Lyme disease and told me the rash was fungal. He said I could probably find doctors who could tell me I had Lyme disease, but that they were quacks who ran mind mills."

Shmukler says the doctor suggested that he had a personality disorder and urged him to seek psychiatric treatment.

"I have no history of psychiatric disorder," says Shmukler. "My biggest risk factors were happiness, success, rising quickly in my profession and a happy romantic life."

Eventually, in 1995, another doctor did diagnose him with Lyme. Shmukler has been on a regimen of self-administered intravenous antibiotics ever since.

Yale is largely perceived as the beacon of Lyme wisdom, having essentially given the disease its name. In 1975, two mothers in Lyme and East Haddam, CT, became alarmed about the many cases of arthritis in area children and contacted the health department. Researchers from Yale University identified "Lyme arthritis" in 39 children and 12 adults. (Records indicate that an illness with similar symptoms was observed as far back as the 1800s.)

Everyone agrees that Yale doctors have done a great deal of valuable research on Lyme. But many observers have become critical of the old-school Lyme vanguard — primarily Dr. Allen Steere, who worked with the Connecticut children in 1975 and named the disease (he has since relocated to Tufts-New England Medical Center) and his key Lyme associates from Yale, Dr. Robert Schoen and Dr. Eugene Shapiro — for clinging to their conservative opinions and jealously guarding their presumed founder’s rights to the disease.

Cover Story Continued