Book excerpt

Cure Unknown (Revised Edition)

Inside the Lyme Epidemic

Pamela Weintraub

St. Martin's Press

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Into the Woods
Chappaqua, New York, 1993–2000
In the year 1993, I spread a map across the sunken living room of our co-op apartment in Forest Hills, Queens, and marked a bull’s-eye at Grand Central Terminal, where trains come in from the ’burbs. I drew a circle of fifty miles radius around the spot, and spent the next three months searching, with my husband, Mark, for a house inside the curve. We sought top-rated schools for our two little boys, proximity to a train on direct route to Manhattan, and an ample yard. One weekend we toured the toy-town streets of Millburn, New Jersey, the next, the wide-rolling lawns of the Long Island town Dix Hills. As chance would have it, we ended our hunt at the most devastatingly beautiful of spots, a winding country road abutting a spruce forest in the tony suburban hamlet of Chappaqua, in Westchester County, New York.
It would be the biggest mistake of our lives. If only we’d known how infected we’d get living on that land and how much skepticism we would face from the local schools and doctors, if only we’d understood that we, ourselves, would be the bull’s-eye, we never would have left Queens. But hindsight is 20/20. At the time, the move to Chappaqua seemed like the answer to our dreams.
Hailing from the hills of Brentwood in Los Angeles, Mark had come of age in the fifties and sixties, atop a canyon, with miles of wooded nature spread out before him and the twinkling lights of the city beckoning below. My background was less lofty, but not less intense. While Mark was running those hills, I was growing up in the housing projects of East New York, Brooklyn, where I shared a claustrophobic room with my kid brother, Alan, and hung out with friends on dicey city streets. I spent my childhood playing tag in the stairwells and scraping my knees on concrete, all the while dreaming of the lush lawns and deep driveways I’d seen only on television, in Leave It to Beaver and Donna Reed.
Fast forward to the eighties. After college and then graduate school in journalism, I moved to Manhattan and, after a few years building my portfolio, was hired as staff writer on the new science magazine, Discover. Mark was finishing an M.F.A. in fiction writing at Columbia when we met in a workshop at the 92nd Street Y. By 1990, we were married and living in Forest Hills with our two little boys. We made our way as writers, specializing mostly in health and science stories for the national magazines in New York.
Thinking back, those long-ago happy days feel like a dream. Blessed with the flexibility of writers, we had abundant time to spend together with our boys. We read books, spent hours at the park, vacationed at the shore, saw movies and friends. It was a rich, creative, fascinating life—it should have been enough. But I longed for that lawn and driveway, and Mark wanted a return to the wide-open nature of his youth, with room for our boys to run.
Chappaqua fit the bill. Countrified in appearance, it was nonetheless urban in sensibility owing to an influx of professionals from Manhattan. It was an easy commute to the city, with a school system so stellar that 15 percent of graduates went on to Ivy League schools. In Chappaqua you could find a taxi company run exclusively for children and a health food store whose work-for-hire clerk knew as much about supplements as a nutritionist with a Ph.D. The hamlet’s compact main drag was a potpourri of gourmet food, real estate agencies, and antiques, all of it anchored by a Starbucks—a nod to the fact that, underneath all the haute, it was really a brand-name town.
Chappaqua had a way of attracting attention and getting into the news. Whether it was the high school football team partying with a stripper (at an event hosted by one of the fathers) or a Little League coach breaking an umpire’s arm, if it happened in Chappaqua it was reported nationwide. When the Clintons vacated the White House, they followed our lead and moved to Chappaqua, a mere two blocks away from us. The day they arrived, reporters chased me down my driveway for quotes.
Chappaqua was one of those ubersuburbs where homes segue into forests, rock faces, and fish-filled ponds: The modest raised ranch we bought was no exception. Our front yard, a tangle of lofty pines, led down to a towering spruce woods out back. A fairy-tale forest that stretched beyond our view, those woods provided haven for an abundance of wildlife, including squirrels, skunks, raccoons, white-footed mice, and deer. Residing in one of about two dozen houses that ringed this wonderland, we felt privileged to own a piece of it.
For years, from the time we moved there in late summer of 1993, our children, Jason and David, spent carefree days in the woods. Along with their friends, they constructed a fort, an arboreal Rube Goldberg made of moist, leafy branches and decaying logs. The contraption was well stocked with plastic action figures and draped, haphazardly, by a tarpaulin cloth. At the edge of the forest, just where the woods gave way to our backyard lawn, we hung a swing from the branch of a tree.
Watching my children play in the shadow of the woods, I passed the time plunging my fingers into the dark brown soil of the rolling backyard lawn, easing out crabgrass by the roots. Mark tended the autumn leaves, gathering them with a rake, piling them onto a drop cloth, and dragging them out to a pile of mulch deep in the backyard woods. My home office overlooked the forest, and often, as I wrote, I glimpsed deer, usually in groups, traipsing past my window and traversing from one part of our property to the next. For a city girl from Brooklyn, it was an otherworldy scene.
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 our older son 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 barely 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 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 had increased in number and intensity over time. The CDC required five of ten bands, each representing an antibody against the spirochete, for an absolute positive—but the experts I later interviewed told me that 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.
But missing out on the chance to treat Lyme disease in these early years paled beside what happened next. I will never forget that October day in 1998 when Lyme disease announced itself loudly, indisputably, across Jason’s torso with what any physician should have recognized as its hallmark—a large red rash with spaces of white clearing, called an erythema migrans and published widely in medical texts. Unnerved at the look of the huge, mottled rash—something I now realize must have come from a recent tick bite—I called the Mount Kisco Medical Group, described it in detail, and suggested I bring Jason in.
“Don’t bother coming,” I was told by a senior member of the nursing staff, on phone duty in the pediatric department that day. Since I couldn’t see a literal bull’s-eye, she assured me, it couldn’t be Lyme disease.
That’s when Jason came down with what I call his “great flu”: a fever, cold, hacking cough, and deep exhaustion that caused him to miss two full weeks of school. Slowly the “flu” went away, but Jason never got well. He now had pain that traveled around his body from joint to joint, constant headache and stomachache, a hacking cough, and inexplicable insomnia and fatigue. His neck hurt so much that sometimes he could not lift his head from his pillow for days. He dropped from all his sports activities—they were simply too exhausting for him. He stopped doing his homework. He refused to see friends, even his two best friends. On more and more days he could not get up for school.
Despite the swollen joints and the rash, our pediatrician at the Mount Kisco Medical Group resisted running any more blood tests for Lyme disease. Jason just had too many symptoms now, he explained to me, while Lyme was limited to just a few. To emphasize his expertise he told me he had trained in seminars at Yale.
As Jason continued his alarming decline over the next year and a half and as we fruitlessly sought an explanation, the diagnosis our pediatrician came to favor was depression. One day, some time after Jason had stopped going to school regularly, the pediatrician took him into a private room and encouraged him to talk about his life at home. After ten minutes of chat, the doctor emerged from the room and said, “It seems he argues with his father. This could be the reason he feels so ill. You had better do something about it,” he warned me, “because if he doesn’t start going to school he’s going to be held back.”
No, he would not do a blood test for Lyme disease, he said again. Instead, he urged us to find psychiatric help and sent us on our way.
We were fortunate because the psychiatrist we found, a renowned expert in his own right though with little knowledge of Lyme disease, did not buy into the “psychiatric” diagnosis. In fact, our psychiatrist had never seen a psychiatric illness like this in thirty years—and why was a pediatrician diagnosing psychiatric disease without any training, and without having completed a full battery of medical tests?
Outraged, the psychiatrist phoned the pediatrician to demand that he be more thorough. And so the pediatrician, finally, reluctantly, drew fourteen vials of blood. “We are testing for every disorder possible, just to make you feel better,” he assured us at the time. Just to placate us, he even tested for Lyme disease. (Despite the fourteen vials, he would not, I later learned, test for the tick-borne coinfections anaplasmosis and babesiosis, one prevalent in Westchester County and the other found commonly on Cape Cod and Eastern Long Island, where we’d spent summers and vacationed many times over the years.)
Even so, at last we hit bingo. In February 2000, Jason finally tipped the scales for Lyme disease on a Western blot, a test for detecting targeted antibodies in blood. To validate a case as late Lyme disease, the CDC required the blot detect five of ten specific antibodies formed to fight the spirochete. And, in what I will always consider a gift from the gods, Jason had eight. The laboratory, LabCorp, duly reported his case to the CDC, but even then, the pediatrician would not concede that Jason definitely had Lyme disease.
Instead, he sent him on to the head of infectious disease at Northern Westchester Hospital, Peter Welch, known for his view that Lyme disease was vastly overdiagnosed. Welch nonetheless told us that Jason had slipped through the cracks and was a bona fide case of late-stage, disseminated Lyme disease, meriting a month of intravenous Rocephin, the big-gun antibiotic for Lyme in the brain. Welch’s Lyme disease diagnosis was something for which we would always be grateful. With so many Lyme patients relegated to the gray zone, we found the Welch imprimatur a valuable commodity when dealing with our insurance company and other M.D.s. Getting the diagnosis from such a skeptic was convincing to us, as well.
When Jason was sicker than ever at the end of the treatment, Welch said that it might take a while for the treatment to work. But if Jason didn’t get better, if the treatment didn’t work, he warned us, then whatever was ailing him wasn’t actually Lyme disease, after all. As weeks passed, as Jason’s illness only worsened, Welch’s ominous words came home to roost. In due course, the diagnosis of “Lyme” was revoked and Welch sent us packing. Back at the Mount Kisco Medical Group, the pediatrician (along with a neurologist he’d brought onboard) returned to psychiatric theories for Jason’s ills.
Too sick to go to school and too confused to do his schoolwork, Jason was immobilized by his brain fog and pain. But what psychic switch had been flipped to prevent our former basketball star and straight-A student from standing or even sitting up in bed; from focusing enough to read a paragraph, let alone a page? What caused him to writhe in pain whenever anyone jostled him, to demand near-darkness before opening his eyes, or to appear so twisted and bent? This “psychiatric disorder” had no name, and could not be found in DSM-IV, psychiatry’s diagnostic bible. Nor could it be validated by our psychiatrist, a university scientist who remained skeptical of these doctors to the end.
We managed to obtain a prescription for an additional four weeks of Rocephin from another, more open-minded physician—Daniel Cameron, a good-humored, kind-hearted Mount Kisco epidemiologist-turned-family-practitioner who saw merit in longer treatment. But in April 2000, after the extra treatment had run its course, Jason was so disabled he could no longer walk. I pondered what to do next. Now wracked by so much pain he could barely sit up, he spent most of each day lying in the bathtub, generally half-asleep, running hot water from the faucet so that it filled the room with a thick gray fog. The soothing water and steam offered the only relief from agony he could find. I kept constant watch over him for fear he could lose consciousness, slip underwater, and drown. The bathroom reflected the state of our lives: The mirror, the countertops, the floor were coated with mist. The hot steam made the drywall crack so plumbing was visible, and caused tiles to blister off the floor. The streaming bathwater created a backdrop of sound, like a white noise machine with the dial set somewhere between “waterfall” and “rain.”
As the water ran and Jason lolled back in the bath, I phoned the Mount Kisco neurologist in one last-ditch plea for help. Had he ever seen this kind of thing? What could it be? “I can’t tell you what it is,” he said tersely, “but one thing I can tell you is that if he’s still sick after two months of Rocephin, it’s not Lyme disease.”
“Should I put him in the hospital?” I asked. “That’s entirely up to you,” he said, before quickly excusing himself, and hanging up the phone.

 
Copyright © 2008, 2009, 2013 by Pamela Weintraub

PAMELA WEINTRAUB is the executive editor of Discover magazine. She has covered science and biomedicine for national media for more than twenty-five years. She lives in Brooklyn, NY.