Microbes, Medicine and Money: 'Under Our Skin' Investigates Lyme Disease

Critics have called the new documentary Under Our Skin "superb" (Time Out New York), "expert storytelling" (Tribeca Film Festival), "artfully shot, dramatic" (Variety) and "emotionally riveting" (Oprah & Friends Network).

Director and IDA Member Andy Abrahams Wilson calls it a chance for atonement.

"My twin sister contracted Lyme disease years ago," says the Northern California resident, in the Marin County office that houses Open Eye Pictures. "And I didn't realize how ill she was. In hindsight I wasn't patient or understanding. I thought maybe she was just being lazy."

It took Wilson two years, 375 hours of film, and bottomless heartache to learn how wrong he was. The Emmy Award-nominated producer/director plunged himself into the Lyme disease epidemic: documenting the lives of sufferers, investigating the controversy about treatment, exposing a conflict-of-interest scandal in the medical establishment-- and raising the red flag of epidemic.

"That is not too strong of a word, no," says the 45-year-old, solemnly. "The Centers for Disease Control estimates that more than 300,000 people may contract Lyme each year,  which makes it the fastest-growing infectious disease in the country--and ten times more prevalent than AIDS, West Nile virus and swine flu combined."

Unfortunately, Wilson says, Lyme is so hard to diagnose that thousands of people are either undiagnosed or misdiagnosed, with ailments including chronic fatigue, depression, fibromyalgia, MS and ALS. Fellow Marin County resident and author Amy Tan, who appears in Under Our Skin, was misdiagnosed for years, suffering from symptoms ranging from headaches to brain lesions, eventually ending up in a wheelchair. No one in her fleet of doctors even considered that she might have Lyme.

"Amy's story is sadly typical," says Wilson. "It's a two-fold failure of the medical community: They don't know the best ways to test for Lyme, and even when they conclude it is Lyme, they can't agree on how to treat it."

The film, which was a finalist for the Audience Award at Tribeca Film Festival (and has won five Best Documentary awards since then), contends that the medical society that sets the standard for Lyme disease treatment is guilty of conflicts-of-interest and, in some cases, in bed with insurance companies--a contention now corroborated by a lawsuit brought by Connecticut Attorney General Richard Blumenthal.

And if the misery of Lyme weren't enough, insurance companies have been refusing to pay for patients' treatment.

"It's because the medical gatekeepers haven't recognized chronic Lyme as a disease," says Wilson. "Obviously, since it's a long-term illness, it's an expensive one. Insurance companies want to pretend it doesn't exist."

One of the film's most compelling profiles is that of Mandy Hughes, a former animal trainer at Sea World, who suffered neurological damage when her Lyme went undiagnosed for several years. In the film she bitterly repeats what one doctor told her: "There's no medicine for someone like you. You're an attractive girl and obviously you don't feel like you're getting enough attention."

Wilson documented Hughes' story--and dozens of others--with his camera over the course of the years, recording their struggles and, with the lucky ones, their slow roads to recovery. He also recorded the stories of people whose family members lost their fights with the disease, including a child whose mother claims her daughter died while doctors fought over how to treat her. It was enough to make the veteran filmmaker lose his composure. 

"Being around these people for all this time was a real privilege, but also very difficult to watch them suffer," Wilson says. "I finally broke down after the funeral sequence; I was just sobbing in front of my co-workers. I guess I had been absorbing all this heartbreak and just had to let it go."

But, galvanized by what he'd learned, Wilson has gone from dispassionate chronicler of events to crusader for change.

"It's great to have gotten all the great reviews," he smiles. "But this won't feel like a success to me until it goes mainstream. People need to see the film and become informed, so we can help curb the epidemic."

Maybe then, his penance will be complete.

Under Our Skin opens theatrically in New York City on June 19 and Los Angeles on June 26, followed by a nationwide release, through Shadow Distribution.

Jane Ganahl has been a journalist, humorist, author, consultant, editor and community organizer in San Francisco for 25 years.

This story originally ran in the October 2008 Marin Magazine.