Through the Looking Glass

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. Part 3 of 3

(See part 1 of 3 here)

(See part 2 of 3 here)

CHAPPAQUA, NY., 1993-2000.

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, sometime 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 ehrlichiosis (today called 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.

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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.

This portion of my personal story concludes for now. I'll turn my attention to other issues for awhile, but will return to my own narrative every now and again.

Excerpted from Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008