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July 8–15, 1999

cover story

Tick Tick, part II

by Stefanie Ramp with Jen Darr

Continued From Here

It’s not so much the conflict of medical opinion to which Yale critics take exception, because, in truth, there’s not enough Lyme research to prove any faction’s hypothesis definitively. Rather, it’s the close-mindedness of Yale’s most prominent Lyme doctors, who refuse to consider the possibility that standard diagnosis and treatment protocols are flawed.

Carl Brenner, one of two patients who sit on the National Institute of Allergy and Infectious Diseases (NIAID) advisory committee for clinical studies on chronic Lyme, agrees that definitive research is decidedly lacking. "It’s a fairly new disease so there’s not a whole lot of a paper trail. Early on in this disease, conclusions were jumped to which have been modified over time as a result of good science. But I think people in any scientific field are sometimes reluctant to let go of pet theories, and I think people on both sides of this controversy are guilty of that.

"It amazes me that people are so entrenched in some of their positions given that the data really isn’t there to support them one way or another. You can create a pretty good case for either side of this controversy. My interest is simply to make sure that enough data gets gathered so that we can get some momentum towards figuring what the true nature of this illness is."

Thomas Forschner, executive director and co-founder of the Connecticut-based Lyme Disease Foundation, and many others suspect that potential liability may be encouraging some doctors’ stalwart resistance to the concept of chronic infection and under-diagnosis. "If, in fact, these patients are chronically infected, and there’s mounting evidence that this is a possibility, some of these doctors who have been going around obstructing patients’ treatment — literally going out of their way to do that at times, and testifying for insurance companies etc. — are potentially at risk for lawsuits." Westchester, NY, attorney Ira Maurer confirms that he is handling several Lyme cases involving misdiagnosis along with the cases of LYMErix trial patients who allegedly became ill from the new vaccine, but he will not comment further.

Not all Yale physicians agree. Dr. Amiram Katz, assistant clinical professor of neurology at Yale, believes that denying the possibility of persistent infection is counterproductive and ultimately harmful.

"In the textbook of pathology, which every medical student reads, it is written that there is chronic Lyme.… We know from syphilis [a spirochetal infection similar to Lyme disease] that this type of bacteria, the spirochete, can be alive and persistent, though at times dormant," he says. Katz asserts that refusing to accept the evidence for chronic infection is "an example of how people are going to an extreme and damaging both themselves and the patients."

Some journal and newspaper articles have gone so far as to suggest that other diseases such as multiple sclerosis, chronic fatigue syndrome and fibromyalgia could actually be Lyme disease.

"There’s no data that supports those claims," says Dr. Roger Pomerantz, director of Thomas Jefferson University Hospital’s Immunology Center.

The Philadelphia Health Department’s Dr. Johnson believes physicians have become tired of hearing so many claims of Lyme infection.

Katz also suggests that more conservative doctors might fear "misuse of treatment facilities and antibiotics, and they’re afraid that people will suffer from the side effects of those prolonged treatments." Katz himself believes that there isn’t enough information about repeated courses of long-term IV therapy and he limits such treatment in his own practice to three months, at which time therapy is extended if a careful reassessment of the patient seems to warrant it.

"It’s like having a little worm in you — it hits this knee, then that knee, this shoulder, then that shoulder, it jumps around," says Roxborough resident Marion Frederick.

Though Dr. Schoen believes that in most cases antibiotic-related risks are not severe, he nevertheless opposes long-term therapy. Schoen explains that in rare cases prolonged use of antibiotics can cause gallstones, temporary and occasionally permanent liver damage, and, more commonly, mild allergic reactions, susceptibility to yeast and fungal infections, gastrointestinal dysfunction, localized inflammation or infection from the IV line and antibiotic-resistant strains of the bacteria.

Penn’s Dr. Gluckman believes long-term IV therapies are "dangerous and should never be done."

There are plenty of "testimonials" that say the treatment is effective, he asserts, but not a single scientific study showing that treatment to be effective.

"There were 30 different cures [based on testimonials] for herpes before they were all considered to be useless," he observes.

Whatever the effectiveness of long-term IV treatment (many chronic Lyme patients say it’s the only thing that helps), some patients reject the option. When a doctor suggested the alternative to Philadelphia resident Marion Frederick, 65, she responded in no uncertain terms.

"I said, ‘Get the hell out of here! Forget it. I am not walking around with a shank in my arm.’"

You might not think you’d be likely to contract Lyme inside city limits. Some doctors even discourage city dwellers from getting the vaccine — not because of its questionable efficacy rate, but because they believe the vaccine’s risks outweigh the possibility of city residents actually being infected with Lyme.

Jefferson’s Dr. Pomerantz was vaccinated for Lyme. But that’s because he lives in Bucks County.

"If you live in the center of Philadelphia, you are unlikely to be in contact," says Pomerantz. "I wouldn’t get yellow fever vaccine."

Still, there’s a risk if you spend time in heavily wooded areas of the city. Just ask Frederick.

Frederick lives in Roxborough, where deer ticks are as common as blades of grass, and where 16 percent of the city’s 1998 Lyme cases were recorded, according to the Health Department’s Dr. Johnson. Frederick says that all her doctor had to do was look at her address to know she had Lyme disease.

Unfortunately, she wasn’t aware she had been bitten by a tick until months later when a severe illness put her in the hospital.

"All my vital signs were fluky," she says.

Before she was infected, Frederick was active — more so than many people her age. The way she describes it, she had a hard time keeping still. Even her diabetes and a family history of arthritis couldn’t keep her from getting things done.

Now, however, her energy level is nowhere near where it was before she was first diagnosed 10 years ago.

"I would get out of bed, have my breakfast and my insulin, and think ‘I’m going to do this and I am going to do that today.’ I’d get outside, put the tailgate down on my truck and just sit there and stare at it."

Her spirit was willing but her body was exhausted.

The disease has devastated every one of her joints. "It’s like having a little worm in you — it hits this knee, then that knee, this shoulder, then that shoulder, it jumps around."

Once she was told she had Lyme, she took antibiotics for six weeks. The treatment didn’t bring her back to normal. Though she rejected the IV alternative, she’s asked for surgery, but has consistently been discouraged.

"Physicians don’t like to operate on joints when they are dealing with Lyme. Perhaps they think because the disease is in your system, it would probably affect another joint," she says.

"I really believe that’s another side effect of Lyme. Doctors hear that you have it and it creates a greater problem. They are not as optimistic."

Still, she remains upbeat.

"You just learn to live with it, especially if you are 65. You are supposed to get these things."

Drs. Schoen and Shapiro of Yale believe that Lyme is overdiagnosed and overtreated. "There’s this myth that’s been perpetrated that Lyme is difficult to treat and causes horrible complications, and that rarely is true," remarks Shapiro. "I also think it’s more socially acceptable to have Lyme disease than to have, say, depression, and people like to put a name on things.… There are a ton of people with nonspecific symptoms and most of their positives are false positives [for the ELISA and Western Blot], so that they think they have this diagnosis of Lyme."

Schoen suggests that long-term treatments carry a psychological risk as well as a physical one. "There are many patients who’re being treated and told that they have a chronic, very-difficult-to-cure problem with long-term, wide-spectrum antibiotics as the only treatment option. If I feel that the patient doesn’t have Lyme disease and doesn’t need that treatment, then I mean that to be reassuring to that patient — that they don’t have this disease."

What has been less reassuring to some patients is the fact that Schoen consults for several insurance companies and Shapiro formulates insurance coverage policies. Critics charge Schoen’s apparent conflict of interest may prevent chronic Lyme patients from getting insurance coverage for the care they need, and Shapiro is making sweeping decisions about what treatments Lyme patients deserve. While most insurance companies pay for the standard oral antibiotic treatments indicated for acute early-stage Lyme, most insurance providers have been far less willing to pay for long-term IV therapy, which can cost up to $6,000 a month.

Even though many patients suffering from chronic Lyme symptoms have been prescribed IV treatment by their doctors, most insurance companies won’t approve coverage unless one of their own consultants concludes that it’s necessary. For consultants, then, medical opinion and money — several hundred dollars an hour — become irrevocably intertwined.

A propulsion engineer for NASA and Lyme patient Peter McFadden says he was denied coverage for antibiotic treatment after Schoen reviewed his case for his insurance company and reported that McFadden did not have Lyme despite a positive PCR test (detects Bb DNA) and a well-documented bull’s-eye rash noted by his treating physician as "being the size of a dinner plate." Further frustrating McFadden, Schoen wouldn’t or couldn’t explain what exactly McFadden was suffering from if not Lyme.

McFadden’s insurance company ultimately reassigned the case to a different consultant who agreed with McFadden’s physician; treatment was covered and the insurance company has been relatively supportive ever since. When McFadden requested a copy of his complete records, he found tucked in the file a bill for Schoen’s consulting job on his case, charging the insurance company $700 for two hours of work.

McFadden has accumulated a good deal of research on Schoen’s practices and has been contacted by many other Lyme patients who feel they’ve been unfairly dealt with by Schoen as well. One patient, an attorney in New Jersey, had a positive Western Blot and a positive PCR, but Schoen said she did not have Lyme. According to McFadden, based on statistical analysis, the chance that both tests would result in false positives would be one in 50,000. He quips, "No university or group of individuals is responsible for more patients with Lyme disease going without treatment than Yale."

Fully admitting that he’s a consultant, Schoen responded to these accusations by telling the New Haven Advocate, "I deal with questions about Lyme disease all day long in all kinds of different settings. I don’t feel anyone has any leverage over me at all. Wherever the questions are coming from, I give the answers I consider to be in the patient’s best medical interest."

According to several Lyme physicians, disagreements over Lyme treatment have evolved from academic squabbles to active animosity in some cases, with doctors accusing their colleagues of everything from overdiagnosis of Lyme to malpractice to profiteering. Says Dr. Liegner, "It’s not an exaggeration to call it a war — a war of ideas — and there have been casualties in the process. People have been scapegoated, careers have been, if not permanently destroyed, seriously damaged." Liegner notes that syphilis engendered a similarly ferocious controversy around the turn of the century and that spirochetal diseases seem to have had the innate power to spark chaos throughout history.

Such a raging conflict has arisen among insurance companies, doctors and patients over chronic Lyme disease care that Connecticut Attorney General Richard Blumenthal dedicated himself to passing legislation (passed on June 9, effective Jan. 1, 2000) that would mandate coverage of long-term treatments prescribed by a patient’s doctor without requiring a second opinion from insurance consultants.

"Quite bluntly, government shouldn’t be deciding what kind of treatment is provided and insurance companies shouldn’t be making arbitrary and capricious decisions about coverage to save money when certain kinds of treatment have been shown to work and improve the condition of people suffering from Lyme disease. I want to leave the decision to medical professionals," Blumenthal explains.

Joel Shmukler says he’s had minimal problems with his insurance company, Blue Cross/Blue Shield, though many companies have refused to cover chronic-Lyme treatments. He pays as much as $1,500 a week for his medication.

Despite feeling "pretty much wiped out and disabled" since 1994, he says his condition has been slowly improving — unlike many other chronic Lyme disease sufferers.

After he was diagnosed with Lyme, Shmukler became a regular at the local library. He wanted to know more about this illness that was controlling his life, and he also wanted to be able to understand the medical jargon.

After accumulating a houseful of medical journals, reports, newspaper clippings and a few shelves full of books about Lyme disease, the logical next step was sharing it with others.

"How could I just sit by while people are being blown off by their doctors and potentially serious infections are being ignored?" he asks.

In 1997 he started Lyme C.U.R.E., the only Lyme disease support group in the Philadelphia area.

Definitive research on Lyme in humans is lacking, in part because you can’t euthanize people and study their brain tissue — one of the places the spirochete is thought to hide. Nevertheless, a study published in the Journal of Clinical Microbiology in January 1997 provided solid evidence of persisting infection in dogs.

The National Institutes of Health has been working on a comprehensive study, the first major Lyme research endeavor of its kind, to help elucidate this possibility. Mark Klempner, principal investigator for the Chronic Lyme Disease Study, and Louisa C. Endicott, professor of medicine at Tufts University School of Medicine, explain that the chronic Lyme component of the study hopes to discover whether chronic infection persists, whether long-term antibiotic treatment is effective and whether better diagnostic tests can be developed.

A related non-human primate study is being conducted at Tulane Regional Primate Center in New Orleans, which may prove to be even more helpful. Rhesus monkeys will be infected, the spirochete will be allowed to disseminate, and then the same treatment regimen used in the human study will be administered. Researchers will study their tissue in an attempt to ascertain whether the spirochete has survived treatment.

The study has been in progress since 1996, and it’s estimated that it will continue for another two to three years. "I don’t think that answers are imminent," cautions Brenner, a member of the NIAID advisory committee. "It’s an extremely complex disease and it’s painful to admit that. I don’t care how much money and effort you throw at this and how much good faith people on both sides can show — I don’t think the answers are right around the corner."

For More Information…

Lyme Disease Foundation: main number, 1-860-525-2000; national hotline, 1-800-886-LYME; Web site, www.lyme.org

American Lyme Disease Foundation: www.aldf.com/index.cfm

Lyme Disease Information Resource: www.x-1.net/lyme/index.html

Lyme Disease Network: www.lymenet.com

SmithKline Beecham information about the LYMErix vaccine: 1-888-LYMERIX (596-3749) (ext. 700), www.lymerix.com

National Institutes of Health: www.nih.gov

For Information and Participation in the NIH Chronic Lyme Study: 1-888-LYME-CTR

Centers for Disease Control: www.cdc.gov

Lyme C.U.R.E.: 1-610-647-2058; Lymecure@aol.com

Sidebars

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Outline of an Epidemic

Good Timing