RuthHinWV
07-18-2007, 01:04 AM
Article written in Discover Magazine (there is no "working" URL for the location of this article)
TICK TIME-BOMB
The explosion of symptoms-muddled thinking, fatigue, a buzzing numbness in her limbs-set this writer on a quest for an answer. Stress, the doctor said. But the culprit lurked not in her 24/7 schedule but in the woods surrounding her home. By Pamela Weintraub
In the mid-1990s, after moving to the upscale, lushly forested suburb of Chappaqua in Westchester County, New York, I began to slide. The flickering headaches, dully aching joints, & intermittent fatigue were so subtle they seemed almost normal in the life of a working mom. Yet by 2000 the odd mix of symptoms had intensified into signs of disease. My knees swelled, sometimes hurting so much I descended the steps of my house while sitting. Whenever I ate, I choked. My arms & legs buzzed, at first gently but then so palpably it felt like an electric current was coursing through them. My vision blurred & the fatigue became withering, laying me low for hours every day. The headache (now tinged with nausea) occurred more frequently & now it never left. Most disturbing was a strange inability to think. I was under a publishing contract to write a book about the brain, but my own brain was shrouded in fog. Despite two decades as a science journalist, I couldn’t follow the neuroscience I’d once read with ease.
Seeking treatment, I was told the problem might be genetic. “Migraines run in families,” a local internist blithely said. She prescribed a number of the latest migraine medicines in quick succession, but although they were considered effective for other people, none worked for me. My issues amounted to aging combine with stress, the doctor explained. In my forties I could expect some decline. And I certainly was stressed out: My oldest son, Jason, suffered a mystery illness far more disturbing than my own.
Starting the year we took up residence in our fairy-tale house by the woods, at the age of 9, Jason had become exhausted & then suffered shooting, stabbing pains in his legs. The doctors called these “growing pains” normal, but by 2000, at age 1t, he couldn’t tolerate sound or light, follow the text in his schoolbooks, or, many days, even get out of bed. As his condition worsened & all sorts of lab tests came back negative, specialists at New York City’s top teaching hospitals suggested diagnosis from “migraine auro” to “parvovirus” to depression, but no treatment prescribed ever helped him get well. Getting to the bottom of Jason’s illness took most of my time.
Hitting Lyme Bingo
“Could this be Lyme disease?” I asked the nearby Mount Kisco Medical Group & other doctors we consulted again & again. After all, Jason had spent summers in the woods in a toy-stocked fort behind our house. Chappaqua was overrun with deer that carried ticks, & it only took a single tick bite to cause Lyme disease.
“No, absolutely not,” I was told by expert after expert, as tests came back negative or equivocal for Borellia burgdorferi, the tick-borne spirochete that causes Lyme.
When Jason developed a huge red rash with areas of white across his torso in 1998, I called the Mount Kisco Medical Group again, describing it in detail over the phone. “Shouldn’t I bring him in? Maybe it’s Lyme disease,” I said.
“Don’t bother coming in,” the nurse responded with great authority. A Lyme rash she, informed me, was always literally a bull’s-eye. As a medical journalist, I should have known better; I could have turned to the world’s top medical journals to see hundreds of Lyme rashes just like Jason’s. Incredibly-perhaps because my own brain was already so compromised-I did not.
I didn’t understand back then how controversial Lyme disease had become: White academic medicine insisted Lyme was easy to treat, a group of persistently sick patients & their doctors, mostly from the suburbs, declared that sometimes the infection couldn’t be cured. Incurable, chronic Lyme, these heretics said, required long-term or even lifelong antibiotic treatment, often at very high doses. Patients like Jason, with acute or long-standing untreated Lyme disease could be swept up in the fight & summarily dismissed as well.
It was 2000 that Jason hit Lyme bingo. He finally tipped the scales for Lyme disease on a Western blot, a test for detecting particular antibodies in blood. To validate a case of late Lyme disease beyond any doubt, the Centers for Disease Control & Prevention (CDC) require that the blot detect 5 of 10 specific antibodies produced to fight the spirochete. Jason’s test from the standard commercial lab, LabCorp, had 8.
Later, as I looked over Jason’s old blood tests & interviewed experts at teaching hospitals, I came to understand the magnitude of a medical error that should never have occurred: Jason had harbored evidence of infection for years in the form of increasing numbers of antibody bands-first 2, then 4, until he reached the unequivocal 8. Combined with the expanding rash & the swollen knees, he turned out to be such a classic case of Lyme that it was reported to the CEC as a surveillance case, one considered so definitive it is used to help scientists track the disease. Doctors had missed the correct diagnosis for a year or two at least, according to one specialist. I suspected it was much longer. Jason would have a long road ahead of him on the path to wellness, but at least now we knew what was wrong.
With Jason’s diagnosis set in stone & his treatment under way, I turned back to myself; could I have Lyme disease too? I lived alongside the same forest dense with deer, in a town identified by Yale University as a Lyme disease hot spot. Often I gardened, plunging my fingers into the soft brown soil without gloves or any other protection.
Yet in my quest for a Lyme diagnosis, I was at a terrible disadvantage, compared with Jason. While he’d finally tested positive on the gold-standard Western blot & had developed the rash, I had no such absolute proof. Instead, my tests, conducted at the well-regarded Laboratory for Diagnosis of Tick-Borne Diseases at Stony Brook University School of Medicine, were equivocal.
TICK TIME-BOMB
The explosion of symptoms-muddled thinking, fatigue, a buzzing numbness in her limbs-set this writer on a quest for an answer. Stress, the doctor said. But the culprit lurked not in her 24/7 schedule but in the woods surrounding her home. By Pamela Weintraub
In the mid-1990s, after moving to the upscale, lushly forested suburb of Chappaqua in Westchester County, New York, I began to slide. The flickering headaches, dully aching joints, & intermittent fatigue were so subtle they seemed almost normal in the life of a working mom. Yet by 2000 the odd mix of symptoms had intensified into signs of disease. My knees swelled, sometimes hurting so much I descended the steps of my house while sitting. Whenever I ate, I choked. My arms & legs buzzed, at first gently but then so palpably it felt like an electric current was coursing through them. My vision blurred & the fatigue became withering, laying me low for hours every day. The headache (now tinged with nausea) occurred more frequently & now it never left. Most disturbing was a strange inability to think. I was under a publishing contract to write a book about the brain, but my own brain was shrouded in fog. Despite two decades as a science journalist, I couldn’t follow the neuroscience I’d once read with ease.
Seeking treatment, I was told the problem might be genetic. “Migraines run in families,” a local internist blithely said. She prescribed a number of the latest migraine medicines in quick succession, but although they were considered effective for other people, none worked for me. My issues amounted to aging combine with stress, the doctor explained. In my forties I could expect some decline. And I certainly was stressed out: My oldest son, Jason, suffered a mystery illness far more disturbing than my own.
Starting the year we took up residence in our fairy-tale house by the woods, at the age of 9, Jason had become exhausted & then suffered shooting, stabbing pains in his legs. The doctors called these “growing pains” normal, but by 2000, at age 1t, he couldn’t tolerate sound or light, follow the text in his schoolbooks, or, many days, even get out of bed. As his condition worsened & all sorts of lab tests came back negative, specialists at New York City’s top teaching hospitals suggested diagnosis from “migraine auro” to “parvovirus” to depression, but no treatment prescribed ever helped him get well. Getting to the bottom of Jason’s illness took most of my time.
Hitting Lyme Bingo
“Could this be Lyme disease?” I asked the nearby Mount Kisco Medical Group & other doctors we consulted again & again. After all, Jason had spent summers in the woods in a toy-stocked fort behind our house. Chappaqua was overrun with deer that carried ticks, & it only took a single tick bite to cause Lyme disease.
“No, absolutely not,” I was told by expert after expert, as tests came back negative or equivocal for Borellia burgdorferi, the tick-borne spirochete that causes Lyme.
When Jason developed a huge red rash with areas of white across his torso in 1998, I called the Mount Kisco Medical Group again, describing it in detail over the phone. “Shouldn’t I bring him in? Maybe it’s Lyme disease,” I said.
“Don’t bother coming in,” the nurse responded with great authority. A Lyme rash she, informed me, was always literally a bull’s-eye. As a medical journalist, I should have known better; I could have turned to the world’s top medical journals to see hundreds of Lyme rashes just like Jason’s. Incredibly-perhaps because my own brain was already so compromised-I did not.
I didn’t understand back then how controversial Lyme disease had become: White academic medicine insisted Lyme was easy to treat, a group of persistently sick patients & their doctors, mostly from the suburbs, declared that sometimes the infection couldn’t be cured. Incurable, chronic Lyme, these heretics said, required long-term or even lifelong antibiotic treatment, often at very high doses. Patients like Jason, with acute or long-standing untreated Lyme disease could be swept up in the fight & summarily dismissed as well.
It was 2000 that Jason hit Lyme bingo. He finally tipped the scales for Lyme disease on a Western blot, a test for detecting particular antibodies in blood. To validate a case of late Lyme disease beyond any doubt, the Centers for Disease Control & Prevention (CDC) require that the blot detect 5 of 10 specific antibodies produced to fight the spirochete. Jason’s test from the standard commercial lab, LabCorp, had 8.
Later, as I looked over Jason’s old blood tests & interviewed experts at teaching hospitals, I came to understand the magnitude of a medical error that should never have occurred: Jason had harbored evidence of infection for years in the form of increasing numbers of antibody bands-first 2, then 4, until he reached the unequivocal 8. Combined with the expanding rash & the swollen knees, he turned out to be such a classic case of Lyme that it was reported to the CEC as a surveillance case, one considered so definitive it is used to help scientists track the disease. Doctors had missed the correct diagnosis for a year or two at least, according to one specialist. I suspected it was much longer. Jason would have a long road ahead of him on the path to wellness, but at least now we knew what was wrong.
With Jason’s diagnosis set in stone & his treatment under way, I turned back to myself; could I have Lyme disease too? I lived alongside the same forest dense with deer, in a town identified by Yale University as a Lyme disease hot spot. Often I gardened, plunging my fingers into the soft brown soil without gloves or any other protection.
Yet in my quest for a Lyme diagnosis, I was at a terrible disadvantage, compared with Jason. While he’d finally tested positive on the gold-standard Western blot & had developed the rash, I had no such absolute proof. Instead, my tests, conducted at the well-regarded Laboratory for Diagnosis of Tick-Borne Diseases at Stony Brook University School of Medicine, were equivocal.