The contested patient endures a lonely journey through the outback of medicine. In the months ahead you can look to this space for discussion of real diseases diminished or dismissed by the medical establishment and the courageous patients and doctors who fight to be heard. To launch this blog, I start with my own story. For years my family suffered the indignity and pain of undiagnosed Lyme disease in the hyperinfested, uninformed hamlet of Chappaqua in Westchester County, New York. This is Part 2 of 3
(See part 1 of 3 here)
Chappaqua, New York, 1993-2000, part 2 of 3
Sure, we sometimes thought of Lyme disease. Everyone knew you could get it in Westchester County, especially the forested sections home to deer. But for us, it wasn't of great concern. As health and medical journalists, we had investigated the risk before purchasing our house. What we read in the popular press and, especially, in the major scientific journals, put our minds at ease.
One study, published in the Journal of the American Medical Association in April 1993, called Lyme mild and curable, except in the rarest of cases. Those who didn't respond to treatment for Lyme disease usually didn't have it, said Dr. Allen Steere, who'd studied the very first patients in Lyme, Connecticut, while working at Yale.
How, then, to explain a tinge of worry expressed by some of our friends when they came to our home? That, too, was clarified by experts, this time in a June 1993 issue of Science, a journal I read every week. The article, titled "The biological and social phenomenon of Lyme disease," invoked the specter of a strange new phobia gripping the suburbs, reminding me of the irrational fear of witches in generations past. Otherwise normal, intelligent people were paralyzed by fear of infection, an edginess only heightened because the young nymphal ticks spreading Lyme were so tiny they couldn't easily be seen. The real disease was fear, the Science authors said. What a pity, they lamented, that irrational fear of a disease, especially one so mild and treatable, had sparked "a negativity toward deer" and "a new sense of conflict between humans and nature" in "some of the most desirable residential areas of the Northeast."
Reading the Science article, I got the impression I was surrounded by a secret cult of Bambi-haters-folks I had yet to meet-who could ruin the value of my hard-earned Chappaqua house with their paranoid, hysterical talk. The Science authors placed the blame squarely on the backs of patient support groups and their leaders-misinformed advocates with missionary zeal, who spread nightmare stories of a progressive, incurable infection driving overwhelming fatigue, disabling pain, and devastating psychiatric disease. These claimants suffered not from chronic Lyme disease, the scientists wrote, but rather, from "premorbid personality" and the "tendency to somatization," which meant they experienced even the mildest or most ordinary of symptoms with the heightened perception of pain. What more did I need to know? A new resident in the forested suburb of Chappaqua, I could add Lyme disease to my list of nonworries-it was hard to catch but easy to recognize and treat, so that if you actually became infected, you could be swiftly and completely cured. And all the noise about Lyme disease? It came from a small group of malcontents, I decided, a club of the disordered or exceptionally neurotic, those attracted to the idea of sickness or looking for some excuse.
Though I didn't know it at the time, scientists had long since chronicled the devastating neuropsychiatric fallout sometimes seen when Lyme disease went untreated for months and years. I would have had to dig deeper for those reports-but why would I? Not one to dwell on disease unless forced to, I put worry aside.
It's easy to see why we had such a cavalier, even reckless, attitude toward the environment, and why, at first, we chalked Jason's flu, cough, and joint aches up to ordinary childhood ills. Our pediatricians at the Mount Kisco Medical Group, northern Westchester's largest medical practice, said all of it was routine. We were concerned in 1995, with the onset of shooting pains through Jason's arms and legs, but the doctors said these "growing pains" were normal. By 1996, in the sixth grade, Jason's knees had become so swollen and achy he could not climb steps, and the middle school, responding to a note from our pediatrician, gave him a coveted key for the elevator earmarked for handicapped students. With his knees in so much pain, Jason had to give up the vaunted position he'd earned on the Chappaqua traveling basketball team because he could no longer run. Perhaps such swollen knees should have been a tip-off to Lyme disease-but the doctor who wrote the note seemed blithely unaware.
As time passed, pain manifested as well in Jason's elbow. We went to a doctor billed as the top elbow expert in Manhattan, who performed an MRI and could find nothing wrong. Along with these joint problems our boy experienced increasing fatigue, so that sometimes he could barely get up in the morning and out of the house unless we physically dragged him and even dressed him. The head of pediatric rheumatology at the Hospital for Special Surgery reviewed the case and told us it was probably parvovirus, an illness that is usually benign. Tylenol was the therapy he thought to recommend.
By 1997, Jason had suffered a heart irregularity his pediatrician and a consulting cardiologist could not explain and advised us to ignore. He underwent a seizurelike incident that caused his eyes to roll back in his head as he stumbled around his classroom and ultimately passed out. A pediatric neurologist at New York University, herself a resident of Westchester who knew just where we lived, told us this incident was probably a "migraine aura," experienced by boys who had migraines without the pain. Unless it happened again, we needn't be concerned, she said.
By early 1998, Jason's knee and elbow pains had intensified, and traveled from joint to joint. Though traveling joint pain is a classic sign of Lyme disease, neither our pediatricians nor the Manhattan specialists we consulted viewed Lyme as a probable cause.
The reason they dismissed the Lyme diagnosis, of course, had to do with the tests. In the course of these events Jason was, naturally, tested for Lyme disease a number of times. But each time his test came back "negative." A negative test, our doctors told us, meant Lyme disease had been excluded as a diagnosis-even though our house bordered a forest that was home to ticks, field mice, and deer. It was only later I realized that the tests contained mounting evidence for Lyme in the form of specific Western blot bands that increased over time. The CDC required five of ten bands, each representing an antibody against the spirochete, for an absolute positive-but changing band patterns offered evidence of active, morphing infection as well. Jason had 3 bands in 1995, 4 in 1997, and then, finally, in the year 2000, on a test done at LabCorp, the unequivocal 8.
If only our doctors had tracked our boy's pattern of antibody bands, they might have seen the evidence. If only they'd viewed the test results in the context of our backyard woods and Jason's swollen joints and other signs and symptoms, they might have seen the light.
Click here for part 3 of 3
Excerpted from Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008