Navigating by Lymelight
Starting in the early 1990s, after we moved from a city apartment to a wooded property in Westchester County, New York, our family began to get sick. At first the illness was subtle: The vague headaches, joint pains, and bone-weariness seemed par for the course in our busy suburban lives. But as years passed, the symptoms intensified and multiplied, burgeoning into gross signs of disease.
My knees became so swollen that I descended the steps of my house while sitting. Swallowing my food, I choked. My arms and legs buzzed—gently at first, but then so palpably I felt like I was wired to a power grid. A relentless migraine became so intense I spent hours each day in a darkened room, in bed.
My husband, Mark, an avid tennis player with great coordination, began stumbling and bumping into walls. Formerly affable, he began exploding at offenses as slight as someone spilling water on the floor. He was an award-winning journalist with a love of literature and a vocabulary so vast he was our stand-in for the dictionary. But slowly he began struggling with memory and groping for words. Finally, ground to a halt, he left his job as editor in chief of the newsletter Bottom Line Health one day after realizing that he’d spent hours trying to read a single, simple paragraph.
Our youngest son, David, began to sleep—first so long that he could not do his homework or see his friends; eventually, so much (fifteen or more hours a day) that he could not get to class. Violating the strict attendance policy at his prep school, he was asked to leave.
Hardest hit was Jason, our oldest, who suffered fatigue and shooting pains starting at age nine, the summer we took up residence in our fairytale house in the woods. The doctors called these “growing pains” normal, but by age sixteen Jason was essentially disabled. He couldn’t think, walk, or tolerate sound and light. His joints ached all day long. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom, drifting in and out of consciousness while hot water and steam eased his pain. As his condition worsened, as all sorts of lab tests came back negative, a raft of specialists at New York City’s top teaching hospitals suggested diagnoses from migraine aura (the dizzying buzz of a migraine) to fifth disease (a swelling of the joints caused by infection with parvovirus). Each diagnosis elicited a treatment, but none of them worked.
“What about Lyme disease?” I asked.
“There are too many symptoms here and he’s way too sick for Lyme disease,” responded the pediatrician, who declined to even test for it.
But by 2000, with answers still eluding us, the pediatrician drew fourteen vials of blood, testing for hormone imbalance, mineral deficiency, anemia, and a host of infections, including Lyme. A week later he contacted us, baffled. Just one test, a Western blot for antibodies against Lyme disease, had come back not just positive, but off-the-charts reactive. Jason was quickly reported to the Centers for Disease Control and Prevention (CDC) as an unequivocal case of Lyme disease. When the head of infectious disease at Northern Westchester Hospital put his imprimatur on the diagnosis, we had an explanation for Jason’s illness and an inkling as to what might be wrong with the rest of us, at last.
Our nightmare had just begun. As with the quest for diagnosis, almost everything about Lyme disease turned out to be controversial. From the length and type of treatment to the definition of the disease to the kind of practitioner we should seek to the microbe causing the infection (or whether it was an infection at all), Lyme was a hotbed of contention. It was the divisiveness surrounding the disease that had caused our pediatrician and the specialists we’d consulted to hold back diagnosis as Jason and the rest of us became increasingly ill.
For patients with early-stage Lyme disease the illness tended to be mild, and a month of antibiotic treatment usually offered a cure. But for those who slipped through the cracks of early diagnosis, for people like us, infection could smolder and progress, causing a disabling, degenerative disease that confounded doctors and thrust patients into the netherworld of unexplained, untreatable ills.
Despite the effectiveness of early treatment, withholding therapy had become increasingly common as a battle royal over Lyme’s essence spilled from medical centers and clinics into the communities where people got sick. The same doctors who routinely doused acne and ear infections with years of antibiotic often would not prescribe even ten days of such treatment for Lyme unless proof of infection was absolute. Meanwhile, the few doctors willing to treat the sickest patients with longer-term or higher-dose antibiotics could be called up for trial by medical boards, putting their practices and licenses at risk.
The war over Lyme had raged for twenty-five years when it swept us up in its madness. On one side of the fight were university scientists who first studied Lyme disease, initially writing it up in medical journals as an infection of the joints. The disease they described was caused by the spirochete Borrelia burgdorferi and transmitted to people by the bite of a deer tick. It was hard to catch and easy to cure no matter how advanced the case when first diagnosed. Late disease was rare, these academics said, because Lyme was recognized easily through a bull’s-eye rash and a simple, accurate blood test. Rarely was their version of the disease seen outside the Northeast, parts of California, and a swath of the Midwest.
To the horror of these scientists, the circumscribed disease of their studies had been hijacked by “quack suburban doctors” who saw Lyme everywhere, from Florida to Texas to Michigan, invoking so many signs and symptoms that they included every complaint under the sun. These heretical doctors, the scientists charged, were dispensing antibiotics like water, all the while raking in money from patients too deluded to realize they didn’t have Lyme disease at all. The patients had other things, the scientists said: sometimes mental disorders, but also chronic fatigue syndrome and .bromyalgia, illnesses with no known cause or cure.
On the other side of the fight, far from the ivory tower, the rebel doctors and their desperately sick patients insisted that Lyme and a soup of coinfections caused a spectrum of illness dramatically different from the one the scientists described. Knees didn’t always swell and the rash (rarely a bull’s-eye) often wasn’t seen. Instead the patients were mostly exhausted, in chronic pain, and dazed and confused. The mental condition they called “Lyme fog” robbed them of short-term memory, stunted their speech, and crippled their concentration. Brain infection could inflict a host of frank psychiatric problems from bipolar disorder and depression to panic and obsessive-compulsive disorder (OCD), they said, and Lyme could trigger autism or be confused with amyotrophic lateral sclerosis, known as Lou Gehrig’s disease, or ALS. Because their illness differed profoundly from the disease described in textbooks, because it often eluded blood tests, the patients went undiagnosed and untreated for years. As they struggled for answers, oncetreatable infections became chronic, inexorably disseminating, and causing disabling conditions that could never be cured. If treatment was to work at all, the heretic Lyme doctors said, it required high-dose antibiotics, often in combination or delivered intravenously, sometimes for months or years.
The patients, for their part, tried to comprehend why the academics dismissed their cases as false. The scientists were promoting an impossibly narrow version of Lyme disease to protect their early work and secure a windfall from Lyme-specific patents, some patients believed. A flow chart entitled “The Wall of Money” began circulating around support groups, connecting some of the researchers with U.S. patents and federal or industry grants. Other patients complained that university physicians consulted for managed care, making hundreds of dollars an hour dismissing Lyme diagnoses and advising rejection of their claims. The academics advanced their agendas, the patients charged, by reporting the doctors who treated them to disciplinary boards.
As medical tribunals swept through the Lymelands, primary care physicians became ever more cautious about treating or even diagnosing Lyme disease for fear of becoming targets themselves. Stepping into the breach, a few doctors—Ed Masters of Missouri, Charles Ray Jones of Connecticut, Ken Liegner and Joe Burrascano of New York—went to the mattresses for the patients, but with the Lyme war so brutal, thousands of cases were missed.
Lyme or not Lyme? Diagnoses could get mixed up. Dueling brain tumor stories make the point. A young woman from Australia went hiking in California. From that trip on her health declined. She eventually experienced such pain, disorientation, and inflammation that doctors thought she might die. She returned to the U.S. for treatment, and neurologists in Manhattan diagnosed a brain tumor. They actually operated, but when they opened her up, there was no tumor. It turned out the young woman had Lyme disease. She was treated with antibiotics and cured. A young man from New Jersey was diagnosed with Lyme disease and treated with antibiotics for months without impact. Finally he was sent to a local medical center, and further testing was done. Doctors discovered a brain tumor and operated to remove it. The boy from Jersey, like the girl from Australia, got well.
The more I investigated, the fuzzier the whole thing seemed. Doctors and labs report more than 23,000 cases falling within the CDC’s circumscribed definition for Lyme disease each year—a number the CDC estimates is 10 percent of the total such cases in the United States. At more than 200,000 new cases a year, Lyme had become one of the fastest spreading infectious diseases in the United States. But how many bona .de Lyme disease patients fell outside that umbrella? Thousands? Hundreds of thousands? More? With so many patients failing to see a rash and the blood tests so equivocal, it was impossible to say.
The line blurred still more because other ticks and infections contributed to the epidemic called “Lyme.” Babesia, a malarialike disease of fevers, headaches, sweats, and profound exhaustion, was almost as prevalent as Lyme disease itself in many areas. Patients sick for years despite aggressive treatment for Lyme disease “miraculously” recovered once Babesia was treated. A bacterial infection called ehrlichiosis, found in a quarter of Lyme ticks in Connecticut, New York, and many other places, including the South, could cause a draining, painful illness marked by fevers, headaches, confusion, and occasionally a rash. Many an “incurable” Lyme patient had been found to have this second, lurking infection; such patients were treated with doxycycline and generally got well. Added to the triad of Lyme-babesiosis-ehrlichiosis are other suspect pathogens inhabiting the same ticks: among them, forms of the rod-shaped bacterium Bartonella and Mycoplasma fermentans, both sometimes invoked as a cause of neuropsychiatric symptoms and chronic fatigue.
Finally, a series of newly discovered spirochetes inhabiting a diversity of ticks have been shown to cause a “Lyme-like” disease, including the classic Lyme rash, in regions overlapping with and extending way beyond traditional Lyme zones. The upshot: an illness that was a ringer for Lyme disease—except that sufferers didn’t test positive because they weren’t infected by the same spirochete as the one causing Lyme disease. With so many cases of true Lyme disease falling short of the CDC definition, and with emerging infections, real and potential, at the periphery of the hostile debate, chaos reigned.
In all the Sturm und Drang, anyone who fell ill could get caught in the mania. Sure, there were those diagnosed with Lyme disease who did not have it. But the more contentious the fight became, the more doctors were targeted for diagnosing outside the CDC definition or treating beyond official guidelines, the more the balance shifted the other way. All you had to do was live in our neighborhoods and meet our families, our children, to grasp how many had waited months and years for diagnoses that should have been rendered swiftly, missing the window of opportunity for early treatment and cure. Adding insult to injury, so many of those who were missed, like our son Jason, had text book perfect cases of classic Lyme disease in proven Lyme zones. They, too, were denied. First thousands, then hundreds of thousands, perhaps a million or more fell victim to the war over Lyme disease, getting so sick they were incurable, as the fight raged on.
I was a patient and a mother, but also a science journalist when my family was swept up in the Lyme war. The winds of that war carried us far from normal reality to a twilight zone of double-talk, an inside-out world with layers of obfuscation, where disease was dismissed as delusion and nothing was as it seemed. How had an affliction so cruel and insidious gripped the underbelly of the suburbs? How had so many patients of relative sophistication wound up victimized by a fight between doctors, ridiculed and marginalized as illness destroyed their lives? What was the truth about Lyme disease? Would I discover the answers in Lyme’s past or from present-day scientists toiling at the workbench, far from the maelstrom of the fight?
Because I was sick myself, my job as a journalist was complex. Some of the experts I interviewed would have deemed me suspect had they known my status, so I strived to draw the line between my life and my job. I attempted to do that which was almost impossible in Lyme: to lead a double life and inhabit two worlds. In the first I was one of the chronic patients, in the midst of a suspect illness. In the second I was a science journalist, discussing, with equanimity, the notion that patients like me were false.
“You cannot argue on the basis of anecdote and individual case history and speculation,” Leonard Sigal, the New Jersey rheumatologist and Robert Wood Johnson Medical Center professor, insisted when I asked him about our ilk. “This way lies madness. Where is the evidence?”
On the beat I looked for evidence, but within myself I felt what Sigal doubted taking hold. Without antibiotics I was sick but with them I was getting well.
As I fought Lyme in my life and struggled to restore my family’s health, the questions and contradictions haunted me. For the mother and patient, Lyme was an albatross, but for the science journalist, it was the story of a lifetime. I couldn’t walk away from it, not when it devastated my family, not when it inhabited my woods.
Excerpted from CURE UNKNOWN by Pamela Weintraub
Copyright@ 2008 by Pamela Weintraub
Published in 2008 by United state of America
All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited.Permission to reproduce the material in any manner or medium must be secured from the Publisher.