Lyme disease is documentary film subject

Martha's Vineyard Times
By Nelson Sigelman

Andy Abrahams Wilson, a San Francisco based filmmaker, said he had never thought much about Lyme disease until his twin sister contracted the debilitating tick-borne disease and endured a long medical odyssey on her way to a diagnoses and treatment.

Mr. Wilson has now focused his attention and documentary skills on the subject of Lyme Disease in a film now under production titled, "Under Our Skin, The Lyme Disease Enigma." His research has led him to the conclusion that our health care system is not responding adequately to what he said is a silent epidemic.

From tomorrow through Sunday Mr. Wilson will be on Martha's Vineyard where he intends to interview people intimately familiar with the ravages of Lyme Disease.

Mr. Wilson said that when his sister, who lived in upstate New York, first complained about the effects of Lyme Disease he thought that she was just trying to get attention and simply tired. Then when a close friend in San Francisco became ill.

"None of the doctors could diagnose what was going on with her and she was just getting sicker and sicker," he said during a telephone interview from his office in California. "She was starting to have neurological problems. She would forget who she was and where she was."

He said the woman was finally diagnosed with Lyme after a number of misdiagnoses. It was that story that first attracted his attention.

"I am a film maker and what I do is really about trying to bring awareness to people and this was a fascinating untold story that I thought needed to be told," he said.

He has been working on the project for a year through a nonprofit corporation set up to produce the film which he expects will be broadcast on a national network like PBS or HBO. The working title is "Under Our Skin."

His Vineyard stop is part of a production trip to the northeast that will begin in Boston and finish in New Jersey. The fact that he has a friend who lives on the Vineyard and an abundance of ticks and people with stories to tell about tick-borne diseases made the Island a natural place to visit.

Mr. Wilson said one of the Vineyarders has already spoken to is Sam Feldman of Chilmark, one of the leaders of the tick task force, an ad hoc group of Island residents concerned about finding ways to reduce the spread of tick borne diseases.

Asked what he has learned over the course of his production research, Mr. Wilson said, "I think that this is such a rampant disease and that people are not getting diagnosed or treated."

One of current controversy that exists is whether there is such a condition as chronic Lyme Disease, which needs to be treated aggressively, usually through a long-term course of antibiotics.

"No matter what the controversy is, people are very sick and people are not aware of modes of transmission and people are losing their livelihoods," said Mr. Wilson. "I see it as a very big crisis, something that to me that in the past seemed like it was just a minor condition to something that is really a public health threat of the greatest magnitude."

And why would seemingly responsible physicians and research scientists not see this as a crisis? "That is one of the questions we are asking in the film," said Mr. Wilson. "And I can't give you an answer for that."

Mr. Wilson said that one of the biggest problems is that many physicians do not have the information they need and are not aware of the magnitude of the problem. He said by most accounts information provided by the federal Centers for Disease Control is inadequate and out of date.

"There is so little peer reviewed information, communication between people working in the field that there is this great chasm between people working with Lyme patients on a regular basis and physicians who just every now and then will get a Lyme patient, or might get a Lyme patient and not know it."

As an example, he said his co-producer and her husband both returned from a trip to the Vineyard with cases of Lyme Disease. "And the doctors at Stanford basically diagnosed them with Silicon Valley stress syndrome," he said. "They've been sick and on their journey of recovery for some time now, but they were fired by their physicians who said there is no Lyme Disease in California."

He said that while people may be more aware of Lyme in places like the Vineyard the disease has become a national problem. The focus needs to be on finding a way to diagnose the disease or people will continue to be sick the rest of their lives he said.

Mr. Wilson said he is currently engaged in research for his film, fund raising to pay for its costs and the actual production. He said the Vineyard trip would provide an opportunity to do some of all three of those things.

"Because of the Vineyard's nature as an endemic area it seem like a natural place to be," he said.

According to his company website, www.openeyepictures.com, in 1994 Mr. Wilson founded Open Eye Pictures, an award-winning production company specializing in creative non-fiction and commercial media. He said the current project was set up as a nonprofit venture because the market is limited and there is little likelihood of profit.

"In a lot of ways it is a labor of love," he said. "I get to do something that I am passionate about, that I believe in, and that I think might help change the world. The downside is that there is no market for that."

People interested in contacting Mr. Wilson to speak about their experience with Lyme Disease may contact him through his office at 415-332-3266.