Filmmaker Andy Abrahams Wilson first heard of Lyme disease in the late '90s when his twin sister, living in upstate New York, contracted it. He didn't take it very seriously.
“I remember thinking she was being kind of lazy, malingering, because it was never anything specific,” says Wilson, 44, who lives near San Francisco. “She was just tired.”
After shooting 375 hours of footage of Lyme patients, doctors and scientists over three years, Wilson's opinion about the disease has changed. Wilson's documentary about Lyme is “Under Our Skin.”
“My point of view is there's a big problem here, and the problem is not being addressed,” he says, mirroring the sentiments of many Lyme activists. “There are thousands of people in this country, and internationally, who are not getting diagnosed and not getting treated.”
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The film chronicles some Lyme patients' long road to diagnosis (some doctors advise patients with persistent complaints of fever, muscle aches and memory loss to seek psychiatric help, patients say) and the ongoing debate over Lyme treatment.
Guidelines published by the Infectious Diseases Society of America in 2006 recommend two- to four-week treatment with antibiotics, but the film shows several patients' health seeming to improve only under long-term antibiotics.
One such patient is an Orlando woman named Mandy Hughes. “Under Our Skin” starts with a scene of Hughes unable to stand up, slurring her speech and twitching. Hughes says she probably contracted Lyme in 1994, but she did not test positive for the disease until 2005. A year-plus course of IV and oral antibiotics appears to restore her to normal function.
Like Michael Moore's “Sicko,” Wilson's film explores patients' struggle for health care coverage. A Seattle woman's insurance company, for instance, cuts off coverage for her Lyme treatment because it doesn't follow IDSA guidelines.
Wilson explores other aspects of Lyme, including whether mothers can transmit it to children and whether it is related to neurodegenerative diseases such as Alzheimer's.
“There's a lot that we don't know,” Wilson says.