Famous Novelist Amy Tan with Seizures, Brain
Lesions and Hallucinations From Lyme
Routine Junk Labs Missed Her Lyme
Amy Tan's experience with Lyme disease was completely debilitating.
She slept constantly, experienced hallucinations and suffered seizures so bad she would lose consciousness. She couldn't read or remember details, and was unable to work at her writing.
She sought medical help and was diagnosed with depression and post-traumatic stress disorder. Doctors tested for a brain tumor and multiple sclerosis and discovered 16 lesions on her brain.
It took over a dozen doctors and four years before "The Joy Luck Club" author found a Lyme disease specialist who diagnosed and treated her.
Tan suspects she contracted Lyme disease in June 1999 while attending an outdoor wedding in Dutchess County, N.Y. (Amazingly, the medical board of New York and the Governor of NY allows the type of experts who diagnosed her to be attacked. Some have lost their license to practice because the NY medical board was clueless on the best Chronic Lyme care. One had to spend over 250,000 to defend themselves from 1980's Lyme medical care lead by the lawyers and old dogs on their state board).
In any event, after the New York wedding, Tan returned to her Manhattan home with flu symptoms. She noticed a rash on her leg and a tiny blood blister, which eventually fell off.
Tan suspected Lyme disease, but there was no bull's-eye -- the shape a rash can sometimes, but not always, take in the case of Lyme disease. Indeed, Lyme can have over 10 different marks. Many of these marks are merely tiny marks commonly found on patient skin.
Her routine junk labs were a mere Lyme Elisa titer and Western Blot done at the typical junk lab came out negative. But Tan know "it's a clinical diagnosis. It's the doctor's judgment looking at patient history."
Dr. Michael Parry, director of infectious diseases and microbiology at Stamford Hospital, said the tests are not completely accurate.
"The tests are sometimes falsely negative," he said. "It takes an astute clinician" to interpret tests and symptoms.
In 2003, three months after being on antibiotics, Tan started feeling better. Joint problems in her hips and knees dissipated, and she continues potent antibiotics. She still has the brain lesions, takes anti-seizure medicine, and her hallucinations and anxieties are gone.
And finally, Tan could write again. She did so voraciously.
Before being treated, she said she lacked the concentration to link two sentences together. Fears she had Alzheimer's, like her mother, pervaded
Parry warned lovers of the outdoors about Lyme and mentioned that pets can be carriers, and children should not crawl in the brush.
"I'm very impassioned about this subject because I nearly lost my functional life," Tan said.
For more information please go to this full article: www.stamfordadvocate.com/news/local/scn-sa-lyme6mar31,0,5618867.story
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