Film : Getting under the skin
A chronic Lyme disease sufferer, Susan Swartz knows firsthand its debilitating effects, and she is passionate in her desire to educate people about the disease.
"It changes your life completely," Ms. Swartz says. "You're exhausted, you can't think, the brain fog moves in, and it's painful."
Unlike routine cases in which patients receive prompt and effective antibiotic treatment for classic Lyme symptoms such as the "bull's eye" rash or flu-like maladies, Ms. Swartz was not aware of a bite, and only sought medical care when she began to experience unexplained discomfort and depletion. Only after several tests in various medical facilities was her Lyme disease confirmed.
"It's a political disease because doctors do not agree on the diagnosis or the treatment," says Ms. Swartz.
That was four years ago. Today Ms. Swartz is on medical treatment as well as some cutting-edge alternative therapies not yet approved by the U.S. Food and Drug Administration (FDA). She says that all this, along with maintaining a scrupulously healthy lifestyle and diet, keeps her stable. But she fears if she neglects any of these measures her health could deteriorate again.
The Edgartown resident, a busy community activist, devotes time and energy into getting out the word about Lyme.
Having produced the Oscar-winning documentary "Born Into Brothels," it stood to reason that Ms. Swartz would use film to deliver her message. She and her husband Jim, teamed with director Andy Abrahams Wilson (whose twin sister contracted Lyme disease), to produce "Under Our Skin: the Untold Story of Lyme Disease."
The film will be shown at three Island locations next week. Two screenings feature follow-up discussions with a panel of three physicians experienced in diagnosis and treatment of Lyme and other tick-borne illnesses. Panelists include Daniel Cameron, MD, President International Lyme and Associated Disease Society (ILADS); Bernard Raxlen, M.D.P.C., and Gerald Yukevich, MD.
Dr. Cameron maintains a practice in Mt. Kisco, N.Y., and has been a pioneer in Lyme disease as an author of practice guidelines, analytic reviews, and clinical trials. He is widely recognized for conducting epidemiologic research while practicing medicine, and for the past 12 years has frequently made scientific presentations at conferences on Lyme disease.
Dr. Raxlen became interested in tick-borne disease because of the chronic undiagnosed symptoms of his patients while practicing in Connecticut where he was a lecturer at Fairfield University and Assistant Clinical Professor in the Department of Psychiatry at Yale University. Over the past 15 years he has successfully treated some 3,500 cases of tick-borne disease, specializing in neuropsychiatric and neurocognitive complications. He devotes more than 90 percent of his practice to chronic Lyme disease.
The Martha's Vineyard Lyme Disease Association and Martha's Vineyard Film Festival join with Open Eye Pictures to present the programs.
"I believe you can beat Lyme but it takes work and daily dedication," Ms. Swartz says. "A support system is essential, someone who can think for you when you're too sick to think for yourself."
Her adult daughter was sick for some 20 years before insisting on a Lyme test. Now she is receiving the same treatment regimen as her mother.
She is outraged at the treatment of doctors who she says have lost their licenses for treating with long-term antibiotics. She also insists that insurers must recognize that chronic Lyme cannot be cured by a short course of antibiotics but can require years of medication.
Referring to the disease as a worldwide Lyme epidemic, Ms. Swartz explained that testing is often unreliable depending on many variables for validity, and that a vaccine briefly on the market has now been pulled out of circulation for further testing.
"I want to help other people, through education, trying to get people to know the facts, demand treatment, and take responsibility for their own lives," she says.
Dyan Redick has been fighting her own Lyme battles since being diagnosed in 2001. Her gynecologist suspected a tick-borne illness after seeing a variety of inexplicable symptoms in her patients. Along with antibiotics, she relies on alternative therapies, diet, exercise, and rest.
"I'm dedicated to a holistic approach to my illness," says Ms. Redick, who lives in West Tisbury. "That means a healthy body, mind, spirit approach. With my late diagnosis, it will be hard for me to say I am cured of the disease. It's now up to me to manage it, rather than it managing me."
Working with others to launch the Martha's Vineyard Lyme Disease Association (marthasvineyardlyme.org), which provides up-to-date information and educational resources,
Ms. Redick wants to raise awareness not only about Lyme but also other tick-borne illnesses such as babesiosis and tularemia, and to see people take precautions routinely. "I want to get to the point that when I remind a parent to do a tick check, they don't give me a dirty look," she says.
Ms. Redick is also involved in research to document the high incidence of tick-borne diseases on the Island. "That will be a tool to start looking at larger prevention efforts," she says. "We've got to get rid of the ticks. It's been done in other places. Anything's possible."