From http://www.lymedisease.org/news/lyme_disease_views/592.html
Pamela Weintraub's stirring speech at the Institute of Medicine's state-of-the-science Lyme workshop on October 11 brought a standing ovation from the audience, and spirited discussion from panelists. Read the text of her remarks here.
Institute of Medicine Talk on The Human Face of Tick-Borne Diseaseby Pamela Weintraub
Lyme disease entered my life in 1993, when my husband Mark, our two sons, and I moved to Westchester County, New York. At the time I was, as I am now, a science journalist specializing in biomedicine for the national consumer press. Our lovely property in the hamlet of Chappaqua abutted a spruce forest, and we reveled in our new contact with nature—there were deer, squirrels, raccoons, mice and all sorts of other animals and birds.
From that point on, we all became increasingly sick. First there were headaches, joint pains, and an inexplicable weariness. With time, the symptoms intensified and multiplied: My knees became so painful that I had to sit down to descend the stairs in my house on my bottom, one step at a time. I developed dysphagia: I had so much trouble swallowing that I literally choked on my food. I developed peripheral radioneuropathy: My arms and legs buzzed, gently at first, and then increasingly painfully until it felt like electricity was running through me. The headaches became relentless. My eyes were painfully sensitive to light. I spent hours each day in a darkened room, in bed.
Meanwhile my husband, Mark, an avid tennis player, began stumbling and bumping into walls. He was an award-winning journalist, but he began struggling with memory and groping for words. Increasingly cognitively impaired, he was forced to leave his job 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 that he could not get to class. In the end he was sleeping 15 hours a day.
Hardest hit was Jason, our oldest, who suffered profound fatigue and shooting pains starting at age nine, late in the summer of ‘93. The doctors called these ―growing pains‖ normal, and my son, though often fatigued, tried to keep going. Then in 1998, he developed a huge erythema migrans rash over his torso. I called the doctor's office and was told not to bring him in—since it wasn't in the shape of a bull's eye, it wasn't Lyme, they said. After that rash, Jason became increasingly ill, and never seemed to get well. By 2000, at age 16, he was functionally disabled. He couldn‘t think, walk, or tolerate sound and light. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom, drifting in a mental fog 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 to parvovirus. Each diagnosis elicited a treatment, but none of them worked.
“What about Lyme disease?” I asked from time to time.
“There are too many symptoms here and he‘s way too sick for Lyme disease,” responded the pediatrician, who told us he felt it was all psychological. Thankfully the psychiatrist we ultimately consulted –an academic scientist who literally wrote the book on child and adolescent psychiatry—disagreed. At his insistence, the pediatrician drew fourteen vials of blood, testing for hormone imbalance, mineral deficiency, anemia, and a host of infections, including one tick-borne disease -- Lyme. A week later he called to tell us that just one test, a Lyme Western blot from Labcorp, had come back positive, with eight of ten bands highly lit.
Finally the head of infectious disease at Northern Westchester Hospital weighed in: In retrospect, he said, Jason had probably been misdiagnosed for years. I will never forget the way he phrased his grudging diagnosis: “I‘ll give it to you,” he said, as if we had earned some coveted prize that others, whose confusing arrays of multi-system ailments could be explained in some other way, would never get. Unaware of the political turmoil over tick-borne disease, I didn‘t yet understand how rare it was for a doctor like him to diagnose late-stage Lyme disease in New York State. Jason was treated with eight weeks of intravenous Rocephin, but when he didn‘t get well, the Lyme diagnosis was revoked, and that doctor, too, consigned him back to psychiatry.
The situation would stretch any one’s credulity: Our formerly straight-A, basketball-playing son, after contracting Lyme disease, being misdiagnosed for years, and finally receiving antibiotic therapy for two months, had now developed a bizarre, unrelated psychiatric disorder whose symptoms were, coincidentally, exactly the same as those of Lyme disease. Perhaps it is possible to believe this kind of explanation when served up by experts talking about other people‘s children; but it is the rare parent who would accept this decree for a child of his or her own --especially when your psychiatrist has never seen a psychiatric disease like this in his life.
My husband Mark and I, by now both quite ill now ourselves, faced a choice: Accept this unlikely story and give up on our son‘s future, or find one of the Lyme doctors said to treat more aggressively, in opposition to the mainstream views we had followed for years to the current, tragic state of affairs.
So in the summer of 2000 we bundled our boy into the car and headed up to New Haven, and the practice of the embattled pediatrician, Charles Ray Jones. Dr. Jones examined and tested Jason and told us he was so sick because he had contracted not only Lyme disease, but two common co-infections that ticks carry —babesiosis and anaplasmosis. Epidemiologically, it seemed like a reasonable call, given the many vacations we’d taken on Martha‘s Vineyard and Cape Cod, where babesia was rife. Dr. Jones treated Jason with standard doses of doxycycline for anaplasma and Lyme disease, and with mepron and zithromax for babesia. Two weeks later –after years of freefall—our son got out of the bathtub and began throwing a basketball around the family room. Two years later he was playing varsity basketball for his high school, and today he is a graduate of Brown University and earning his MFA in film.