IS LYME DISEASE A BRUTAL ILLNESS CUTTING A DEVASTATING AND OFTEN UNDETECTED SWATH THROUGH SOCIETY, OR IS IT SOMETHING FAR LESS SERIOUS? THE WAR OF OPINION RAGES. THE BATTLEGROUND IS CONNECTICUT.
BY NICOLE WISE
It’s not the Cold War we fear anymore. Ours is an age in which viruses have become the unknown dread, bacteria the bad guys we fear and run from. Sickness—whether it’s Ebola in Zaire, E Coli in Seattle, or flesh-eating creepy crawlers in Norwalk—is a hot topic. We see it on television and in the movies, and we read about it everywhere. Under such conditions it makes sense that Lyme disease, the insidious tick-borne illness that no one has been able to figure out completely, has burrowed into our consciousness just as surely as the tick itself burrows into our skin. Here in Connecticut, people have learned to think about ticks, and to protect themselves; to recognize the symptoms of Lyme disease, vague as they may be; and to seek medical attention at even the slightest suspicion of infection.
The question is, Will they get what they need?
And, Will they need what they get?
Lyme disease has divided the medical community in recent years. On one side are academically oriented physicians, who believe the disease to be something of a medical success story, a threat quickly brought under control. On the other side are doctors, advocacy groups and individuals who believe we are facing a public health threat of unknowable scope. The number of doctors who characterize Lyme disease as an easily identified, usually benign seasonal health problem are in the majority at present, but the others, who believe Lyme potentially to be the scourge of our time, are very vocal and growing in number.
It’s hard to know who, or what, to believe. Even here in Connecticut, where Lyme disease was first diagnosed and named in 1976, and which is widely considered to be the epicenter of the disease today, with by far the highest rate of infection (62 documented cases per 100,000 residents in 1994). Even here in Connecticut, a state which is home to and neighbor of some of the finest medical institutions in the world. Even here in Connecticut, the state that headquarters the Lyme Disease Foundation, an organization extolled by some, repudiated by others, but generally recognized to be the group responsible for bringing Lyme disease into the national consciousness.
The Lyme Disease Foundation was founded in Hartford by Tom Forschner and Karen Vanderhoof-Forschner, who claim they lost their son Jamie because Lyme disease went undiagnosed during Karen’s pregnancy in 1985. Despite the fact that she had classic symptoms of Lyme, including the widely publicized bull’s-eye rash, her doctor failed to recognize the disease and she passed it on, in utero, to her unborn son. Born with multiple disabilities, which his parents say might have been prevented had his mother been properly treated, Jamie died in 1991. The organization operates with a budget of about $380,000, raised primarily from private donations and boosted by a $75,000 physician education grant from the Centers for Disease Control in Atlanta. Its mission, according to press materials, is “the prevention, detection and recovery of Lyme disease, with the ultimate goal being to make Lyme disease a non-risk.”
The foundation is recognized internationally—but not always acclaimed. It wishes to be characterized as taking a middle-of-the- road position, but others claim that “radical fringe” would be more like it, mostly because of its ardent activities in the area of patient advocacy.
We find it very hard to understand the sometimes dogmatic viewpoints of scientists or public health officials who seem to be making policies and declarations without regard to the published data,” explains Karen Vanderhoof-Forschner. “Those kinds of declarations sometimes put us in the position of saying, ‘Wait a minute, what about this study?’
“There is one area in which we are not neutral,” she adds. “We
believe that no Lyme disease patient, physician or researcher should be personally ridiculed, and we advocate dignity for the parties involved. I have never seen a person suffering from a disability or a physician treating disabled patients openly mocked, except in the Lyme disease area. We have no patience for anyone suffering from Lyme disease being publicly portrayed as a hysteric. And physicians and researchers should not be targeted for ridicule or behind-the-scenes attacks on their reputations.”
The foundation’s cause is not helped, though, by an undeniable lunatic fringe in the Lyme disease community that’s working hard to get attention. One Lyme patient in Ohio has widely disseminated a lengthy document linking the disease to biological warfare dating back to 1950. “Those in charge of the Lyme disease conspiracy can count on the citizens of the United States to not believe that such a conspiracy exists,” she writes. “I am not paranoid,” she adds. “I have been off antibiotics for many months.” A Texas chiropractor has recently announced that he cured his own Lyme disease with a silver compound for which he, of course, is the exclusive agent.
To some critics, even the foundation has acted in an unbecoming manner. “Organizations like this have sensationalized the problem, rather than adding rationality to it,” says Dr. Michael Parry, chief of infectious disease and microbiology at Stamford Hospital. “It’s an approach that hasn’t given them a whole lot of credibility in the scientific community.”
Lyme disease seems an endless source of disputation. “If you want to talk about controversies, we could go on for days,” says Dr. Martina Ziska, medical director for the foundation, who proceeds to reel off a long list of areas of disagreement within the medical community. “We could talk about where the ticks are, and where they aren’t; what a tick bite means, and how long a tick takes to transmit the disease; what the symptoms of Lyme disease are, and what they aren’t; how Lyme should be treated, and how it should not be treated; what is early Lyme disease, and what is late-stage or chronic Lyme disease; and what is the magnitude of that diagnosis.”
The issue that gets most people the most ticked-off, as it were, is that last one: the magnitude, or meaning, of a Lyme disease diagnosis, especially when it points to chronic, or late-stage Lyme. The disease is generally thought to take a course with three distinct stages: early Lyme, which follows a tick bite fairly quickly and includes (usually) the classic bull’s-eye rash along with vague, flulike symptoms; a second stage, where large joints, such as the shoulder and knee, become arthritic and painful; and a third stage, where the spirochetes that carry the infection invade other bodily systems, including the cardiovascular system, the central nervous system, and ultimately, the brain.
“The magnitude of this disease has been downplayed since it was first discovered in the late ’70s,” says Dr. Ziska. “The original perception was that it was a simple, self-limiting disease that mostly affected the joints, a problem primarily affecting only people who were active outdoors—boaters, campers, golfers. The medical community is coming around to a different point of view, but slowly. I believe their unresponsiveness and lack of flexibility about this matter is, in some ways, responsible for the rather radical reaction that has come from the public. People are frustrated.”
Others would say that people are merely misinformed. “I believe the foundation and many physicians are far too overzealous about the need for intensive IV therapy, without adequate evaluation for other problems,” says Dr. Parry. “They have expanded the spectrum of Lyme disease to include a whole host of other problems, like simple fatigue and depression. They all end up in the Lyme disease basket.”
The conservative view of Lyme disease holds that most cases turn out to be minor. When the disease follows its classic course, a tick bite followed by a rash and flulike symptoms, and is treated, most doctors believe that most patients recover. Completely. “If you catch and treat Lyme early on, it is unlikely to go to further manifestations of the disease,” says Dr. Robert Shoen, co-director of the Lyme Disease Clinic at Yale and a physician in private practice in New Haven. “If it is not treated, for whatever reason, there is a fairly high likelihood—in the area of 50 percent—that the person will then go on to develop Lyme arthritis, which is also a very recognizable and treatable illness, although it may not be eradicated with just one course of antibiotics. But that is not the big worry that is out there. The worry, which is that undiagnosed Lyme will invade and damage the central nervous system, is really quite a small risk. Well under 5 percent.”
That small group makes a lot of noise, however. In many communities in Connecticut, regular support groups meet to allow Lyme victims an opportunity to vent their rage and share insights, solutions, suggestions and the names of sympathetic doctors and organizations. Many people in the community at large know at least one individual whose life has been irreparably damaged by Lyme disease. Many of these patients have been in treatment for years, and are furious at what they believe is the medical community’s absolute refusal to believe that Lyme has destroyed their lives.
Elayne Denner, a 39-year-old Stamford librarian who lives a life she describes as “dramatically curtailed” due to a six-year fight with Lyme, says the disease actually blinded her for a time. She believes she contracted Lyme disease in California in 1989, but went undiagnosed for three years until she read about the symptoms in a veterinarian’s office, when her dog was diagnosed with the disease. “When I got his test result, it was like a light bulb—all of a sudden I realized that this was what my problem was,” she says. “My symptoms had progressed to the point where I was getting lost on my way to familiar places, light bothered my eyes, I couldn’t focus or remember any details, and I was crying all the time. I went to my doctors and asked for a Lyme test, and he had to go out into the hallway to read a pamphlet about it in his waiting room. This was in 1992—you’d have thought he’d know about the disease by that time.”
She had a positive lab test for Lyme and was treated for three weeks with antibiotics—standard therapy for early Lyme—but failed to get better. Eventually, she went to a clinic at Johns Hopkins in Baltimore, where her sight was partially restored. Today she is still taking antibiotics, plus a complicated regimen of what she calls “probiotics”—vitamins and nutritional supplements she and her doctor believe will help her immune system fight the disease.
John Laughlin, 34, of Groton, tells another version of the story. Although he’s never had a positive test for Lyme disease, there is no doubt in his mind that he has had the disease for 12 years.
“One morning I woke up and wasn’t feeling well, had flu symptoms and a lot of fatigue.” Laughlin says. “I went to my doctor and he didn’t know what was wrong, so he gave me what he called a shotgun therapy: steroids that were intended to clear out my system. For a while it seemed to work and I felt a little better. Apparently the Lyme went into remission, but I kept getting sick, a few times each year but increasingly, more and more. The doctors I went to just told me it was something I had to live with.”
Whatever he had eventually debilitated him to the point where he could no longer work as a carpenter and real-estate agent, and—although his bloodwork remained negative for Lyme disease—he became convinced that it was the root of his problem. In December 1993, Laughlin found a doctor, Bernard Raxlen in Greenwich, who agreed with him and started him on an aggressive course of intravenous antibiotics. It has helped, says Laughlin, who continues to drive the 108 miles to Raxlen’s office to receive antibiotics, nutritional supplements and vitamins, and psychological support he says no other doctor has been able to provide.
Still, his life is severely limited. ‘The weather has an unbelievable impact on me,” he says. “Today it was rainy and I didn’t even want to go out. I’m pretty much flat broke, but I managed to scrounge up $7.50 in change from my car, and I went and sat in a tanning booth for 20 minutes. It didn’t feel so bad. So I came home and took a hot shower and applied Mineral Ice, then put on layers of warm clothes and climbed into my sleeping bag with a hot-water bottle. Days like this one, they’re hard.”
“There is nothing in my 25 years of practice that even comes close to this syndrome,” says Dr. Raxlen, a family practitioner who specializes in psychiatry and neurology, and sees many Lyme patients. “There are so many cases of chronic, longterm Lyme disease that [show up] as much as a year later, when a patient has no memory of a tick bite and their health has started to deteriorate. Many of these patients have even had a trial period of antibiotic therapy that has done nothing at all to help. Meanwhile, the illness is digging deeper and deeper, and the patient is losing more and more ground.”
But many doctors and insurers question those lengthy periods of expensive, invasive IV antibiotics, along with the immune-system-boosting supplements. “It can be kind of self-serving,” points out Dr. Parry. “A doctor might charge $100 a day for mixing and providing the drugs from the office, which is kind of a standard fee, but it might only cost, say, $30. That is a lot of money over time, and insurance companies are saying they aren’t going to pay for it. I don’t personally know of anyone who is under investigation for this kind of practice, or has lost their license, but I do know that people are looking at it, and are concerned. And I am certainly aware of numerous instances in which insurance companies have refused to pay.”
Doctors who treat a lot of Lyme patients admit most insurance companies routinely refuse to cover the cost of their long-term treatments. One Glastonbury physician who treats many Lyme patients and is currently battling his insurer because of it was even blocked by his wife from speaking with a reporter about this issue. “I imagine he would really like to talk to you,” she said, “but as his wife, I can’t let him take that chance. You need to understand that just about all doctors have contracts with insurance companies that can be cancelled without notice, so it wouldn’t be a good business decision to speak to you. But I will tell you this: The academic infectious disease specialists may not believe the incidence of Lyme is all that high, and they may believe the disease is easy to treat, but those in the community who see the patients have a different experience.”
Another concern is that long-term treatment with antibiotics, while sometimes unquestionably necessary, can have devastating effects. “No drug is free of side effects,” says Dr. Parry. “Antibiotics, in particular, have a long list of potential side effects, and some of them are even life- threatening—particularly when taken over a very long period of time.”
Chronic Lyme disease, which can wreak neurological, cardiovascular and other sorts of havoc, is universally recognized to exist, but many doctors believe that all but a very few of the people who have been told they have the problem have been misdiagnosed. In a recent paper published in The Journal of the American Medical Association, Dr. Allen Steere of the Tufts University School of Medicine (who, while at Yale, first identified Lyme disease in a cluster of arthritic children living in and around Old Lyme in 1976) asserted that, based on research he directed at a Boston clinic, most chronic cases have been wrongly labelled. Of the 788 patients referred to the clinic for chronic Lyme disease, only 25 percent were found to actually have the disease, based on both clinical symptoms and positive serological (blood) test results.
A frequent culprit is a false positive in the lab tests used to confirm the presence of the spirochetes that spread Lyme disease throughout the body. Dr. Eugene D. Shapiro, professor of pediatrics and epidemiology at the Yale School of Medicine, explains that in a group of 100 people who do not have Lyme disease, five will have a false positive test result. “What that means,” Dr. Shapiro says, “is that if you do the test on a group of people who come in with nonspecific complaints, like fatigue and aches and pains and depression, you will get a lot of false positives. The test is useful if you come in with a big, swollen knee and a bull’s-eye rash; it confirms the clinical diagnosis. But if you come in saying you are really tired, and you have headaches, and the test is positive, it really may not be Lyme disease. And that is what is happening with a lot of the people you hear about who are treated forever and aren’t getting any better.”
Many patients, having read or heard about chronic Lyme disease, refer themselves for treatment, certain that the vague malaise they are suffering is Lyme, when in fact it may be something else. “I used to see these patients coming in with chronic fatigue syndrome, or with Epstein-Barr,” says Dr. Parry. “Now they come in as Lyme patients. They do have something; some doctors think it is viral, some think it is psychiatric. I think it is a real entity for these patients. But I don’t think it is Lyme disease.”
Dr. Raxlen is not so quick to dismiss Lyme disease in such cases. “It is my observation that Lyme disease often presents itself in the tristate area as much more of a neurosensory and cognitive disorder than a joint or rheumatoid disorder,” he says. “The symptom [my patients] most often complain of is short-term memory loss, and I’m talking about executives and professors with Ph.D.s and women who have successfully raised two or three children. The memory problem has dramatically interfered with their ability to function. They have a distortion of sight and sound, smell and taste. Night blindness. Sensitivity to light. A sandpapery feeling on the skin, a crawling feeling. Then, out of nowhere, psychiatric problems crop up. They become phobic, afraid to leave the house. They have exhausting fatigue, irritability, a flair to violence. About 80 percent have sleep deprivation. When you hear a lot of these subtle neurosensory problems, you begin to prick up your ears. When you get a healthy person who has never been ill, and they have two-thirds of these symptoms, something is dramatically amiss.”
True enough. But is it Lyme disease?
In the view of the Lyme Disease Foundation, it is. Tom Forschner, co-executive director, cites a study underwritten by the foundation and conducted by the Society of Actuaries in which 503 people with documented cases of Lyme disease, including positive test results, were followed up one year later, and only 11 percent reported that they were symptom-free. “Various people have a different course of the disease,” says Dr. Ziska. “There is no uniform picture of Lyme—it is different depending on who you talk to. If you talk to a doctor who only rarely sees chronic problems, he will say we don’t have to study this because it isn’t really a problem. If you talk to front-line doctors, the people who are seeing patients with the disease, they say it is huge. If we don’t address it in the appropriate way, it certainly will become a much bigger problem.”
That certainly seems to be the case when one listens to the truly painful stories of those who have been waging personal battle with the disease. Eileen Wade of Fairfield, a single mother who once held a lucrative, responsible position in sales administration, says she now lives on Social Security as she and her 19-year-old daughter fight the devastation Lyme has wrought. Wade first became ill in 1985 and today is all but totally debilitated. “Is everybody who is sick with this nuts, or what?” she asks. “Believe me, I didn’t do this to myself on purpose. I had a great job, I made a lot of money, and look at what my life is like now: I slept 14- and-a-half hours last night. Doctors don’t understand. I live here in Connecticut, where our doctors are supposed to be the best, but I have to go to Long Island for treatment. It’s sad.”
It’s hard to know what to make of such accounts, but it may be significant that one of those in the opposing camp is willing to take another look. When Dr. Steere’s article appeared in the spring of 1993, it spawned a flurry of outraged letters from physicians who disagreed very strongly with his conclusion about the overdiagnosis of chronic Lyme disease. This spring. Dr. Steere received funding from the Centers for Disease Control to reevaluate the health of patients he had diagnosed and treated for Lyme a decade ago and longer, to determine how having had Lyme has affected their lives, and whether any long-term health problems have resulted from that infection. While Dr. Steere will no longer speak to reporters about either study, a woman who works closely with him says, “You know, somehow this information got out on the Internet and, I’ll tell you, we have just been deluged with phone calls from people who want to be in that study.”
Thousands of people call the Lyme Foundation, too, says Tom Forschner. “I don’t really know what is going on with Lyme disease. It is difficult to say what percentage of people get chronic Lyme after being infected, because we don’t even know, truly, how many people are infected. We believe one in 10 cases of Lyme are reported. We have found that a fairly significant percentage of people, after several years, still have signs and symptoms of the disease. If it’s not Lyme, what is it?”
This article was reproduced for the web by scanning an archive issue of Connecticut Magazine. Some transcription errors may have occurred.