The following is a reply made by a writer who is an adjunct instructor in public health at Boonshoft School of Medicine at Wright State University.
"I WAS glad to see the article about Lyme disease on the front page of last Sunday’s Globe (“Drawing the lines in the Lyme disease battle,” June 2).
The so-called fanatics I’ve met, including my sister and a friend, weren’t fanatics at the start of their illnesses. When nobody listened to them, few believed them, and many misdiagnosed them, their unrelenting and despairing cries for help were described as “fanaticism.” Baloney. Both eventually were successfully treated, recovered, and are now well. And they are still not fanatics.
Public health ethics teaches us to listen to patients carefully and apply basic scientific methods to the issue at hand. Why Lyme is still so underdiagnosed and mostly untracked is mind-boggling, given the energy and resources invested in tracking, diagnosing, and treating a host of other infectious diseases, including other vector-borne illnesses such as West Nile virus.
Why there is even a controversy over diagnosing and treating a bacterial infection similar to syphilis is incomprehensible in 2013."
From the article:
"Dr. A S [the violinist], a slender 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.
Suddenly, from the back of the Boston University meeting room, a man in a blazer and scarf jumped from his seat.
“A S’s papers killed my sister!’’ T G (shouted as some 60 stunned attendees at the January dinner talk watched nervously. “She died and you have her blood on your hands.’’
"The last words T G says his 43-year-old sister uttered were aimed at the medical world that denied her antibiotics: Make them pay, she said, accompanied by an obscenity.
Grey spends much of his time trying to do so. He filmed a 2009 documentary on his sister’s death, which her doctors attributed to ALS, “Under the Eightball"