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72 m a s s a g e & b o d y wo r k j u l y/a u g u s t 2 0 2 2 Long-Term Lyme Disease Controversies and Challenges By Ruth Werner essential skills | PATHOLOGY PERSPECTIVES Meet Rosie. 1 At age 28, Rosie was energetic, athletic, and powerfully motivated. She was a first-grade teacher and active in her community. That summer, she attended a family event in an area where disease- carrying ticks are common, and a few weeks later was struck down by an unknown illness. The first thing she noticed was fatigue and that her heart rate slowed alarmingly—to about 32 beats per minute. She had no rash or other swelling, so her primary care physician declined to test her for Lyme disease, and she did not take the recommended course of antibiotics. Rosie was struggling with dizziness, fatigue, and peripheral neuropathy. She stayed in the classroom until spring, until she realized that she couldn't continue. She resigned from teaching and moved in with her parents. Rosie had developed blinding migraines, and the antiseizure drugs she was prescribed to treat them made it nearly impossible for her to function. She spent the next two years on the family couch, struggling to do even the most basic self-care tasks, let alone work. She sought help from conventional medical doctors, including neurologists, immunologists, cardiologists, and other specialists, most of whom assumed she had chronic fatigue syndrome or an eating disorder. Feeling she had nothing to lose, she consulted a physician who, without examining her, recommended several months of high-dose, intense antibiotic therapy— enough that her pharmacist was reluctant to fill her prescriptions. (This physician turned out to be under probation for malpractice at the time, and shortly after Rosie's treatment concluded, his office was raided, and he was shut down.) The drugs made her feel awful—so bad that at one point she discussed her funeral plans with her mother. The antibiotics also damaged her digestive tract, which has not fully recovered. But Rosie finally turned a corner and began to improve. Rosie still has a low heart rate and occasional dizziness and migraines. She is also allergic to wheat—something new since her illness and treatment. But otherwise, her health and vitality have been restored. She is now active and healthy with a fulfilling, demanding job, and she is raising a family. Did the sketchy medical treatment help her? It's hard to say definitively because correlation is not causation—but nothing else she had tried made any difference. Rosie's story is not typical, but it is also not unusual. Large-scale clinical trials have not demonstrated that this treatment strategy is effective or even safe, but for some people it seems to help. And this is at the heart of the many controversies that surround persistent Lyme disease symptoms. WHAT IS LYME DISEASE? Lyme disease is a tick-borne infection with a pathogen called Borrelia burgdorferi. It was first identified in the US in the town of Lyme, Connecticut, in 1982, where a scientist named Wilhelm Burgdorfer tracked what looked like a local spike in diagnoses of juvenile-onset rheumatoid arthritis to the action of a spirochetal bacterium spread through the bite of deer ticks.

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