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Lyme disease is on the rise, and so is controversy over how sick it makes patients

HYANNIS, MA—4.29.13--Scott (Scoot) Caseau (cq) getting IV antibiotics for his Lyme disease and related illnesses in the Infusion Room at Cape Cod Hospital. Here, Scott waits patiently for the IV to finish. Section: Health/Science Reporter: Daley (Steve Haines for The Boston Globe)
Scott (Scoot) Caseau is a Harley-Davidson devotee who has suffered from debilitating headaches, fatigue, and joint pain for more than 15 years. He is seen here getting IV antibiotics for his Lyme disease and related illnesses in the Infusion Room at Cape Cod Hospital.Steve Haines for The Boston Globe

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Dr. Allen Steere, a Massachusetts General Hospital rheumatologist, clicked on a slide as he recounted the early days of Lyme disease, the illness that became the singular focus of his career.

From the back of the meeting room, a well-dressed man jumped from his seat. “Allen Steere’s papers killed my sister!’’ Timothy Grey shouted. “She died and you have her blood on your hands.”

Nearly 40 years after Steere discovered Lyme, Grey’s outburst highlights the rising anger and activism of patient groups that are hugely dissatisfied and mistrustful of the medical establishment’s response as the disease spreads across the Northeast.

It’s a controversy with significance far beyond Lyme, reflecting gaping differences in how segments of the medical world and the public cope with scientific uncertainty.

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