![]() ![]() My own doctor cautioned that the label Lyme disease was easy to pin on one’s symptoms, because the tests can be inaccurate. ![]() Even if I did have Lyme, there was little agreement about how to treat a patient like me-whose test results were equivocal and who had been diagnosed very late in the course of the disease-and no guarantee that I would get better if I tried antibiotics. I wasn’t sure whether the disease I had really was untreated Lyme. Yet instead of feeling relief, I felt I had woken into a nightmare. The stories were not encouraging.Īfter a decade and a half in the dark, I at last had a possible name for my problems. Many had been shunted by internists to psychiatrists. Along the way, nearly all had navigated a medical system that had discredited their testimony and struggled to give them a diagnosis. Some were so disoriented that they had trouble finding their own home. I read posts by people who experienced debilitating exhaustion and memory impairment. To keep symptoms at bay, some of them had been taking oral and intravenous antibiotics for years, which can be dangerous one acquaintance of mine was on her fifth or sixth course of IV drugs, because that was the only treatment she’d found that kept her cognitive faculties functioning. I began to do research, and discovered other patients like me, with troubling joint pain and neurological problems. I’d never gotten the classic bull’s-eye rash, but this doctor ordered several Lyme-disease tests anyway though indeterminate, the results led her to think I might have the infection.Ĭheck out more from this issue and find your next story to read. Over the years, I had pulled many engorged deer ticks off myself. I had grown up on the East Coast, camping and hiking. Even so, I felt terrifyingly alone-until, in the fall of 2013, I found my way to yet another doctor, who had an interest in infectious diseases, and tested me for Lyme. I was a patient of relative privilege who had access to excellent medical care. Is this all in her head? I felt them wondering. Many doctors, I could tell, weren’t sure what to think. I saw expensive out-of-network “integrative” doctors (M.D.s who take a holistic approach to health) and was diagnosed with overexhaustion and given IV vitamin drips. I visited acupuncturists and nutritionists. Debt piled up as I sought out top-tier physicians (many of whom didn’t take insurance)-a neurologist who diagnosed neuropathy of unclear origin, a rheumatologist who diagnosed “unspecified connective-tissue disease” and gave me steroids and intravenous immunoglobulin infusions. Something was wrong.īy the following fall, any outing-to teach my class, or to attend a friend’s birthday dinner-could mean days in bed afterward. At home, I asked my partner, Jim, whether he had ever experienced anything like this. I knew I knew him, but who was he? It took an hour to recover the information that he was a friend. I looked over at the man sitting next to me-a novelist I’d known for years-and realized that I had no idea who he was. One chilly December night in 2012, I drove a few colleagues back to Brooklyn after our department holiday party in New Jersey. I looked over at the man sitting next to me-a novelist I’d known for years-and realized I had no idea who he was. Yet some part of me thought that perhaps this was what everyone in her mid-30s felt. Teaching a poetry class at Princeton, I found myself talking to the students about “the season that comes after winter, when flowers grow.” I was in near-constant pain, as I wrote in an essay for The New Yorker at the time about living with chronic illness. Recalling basic words was often challenging. Yet despite eating carefully and sleeping well, I was having difficulty functioning, which didn’t make sense to my doctor-or to me. In 2012, I was diagnosed with a relatively mild autoimmune disease, Hashimoto’s thyroiditis. ![]() Nothing was really wrong, the doctors I visited told me my tests looked fine. In 2008, when I was 32, doctors identified arthritis in my hips and neck, for which I had surgery and physical therapy. A doctor I consulted thought, based on a test result, that I might have lupus, but I had few other markers of the autoimmune disease. In 2002, I began waking up every night drenched in sweat, with hives covering my legs. Over the years, the shocks and other strange symptoms-vertigo, fatigue, joint pain, memory problems, tremors-came and went. To hear more feature stories, see our full list or get the Audm iPhone app. ![]()
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