Lyme documentary scratches beneath the surface
By Frances Moore
Posted: 02/19/2009 10:00:00 AM EST


In this part of the country, specifically in this state, the term "Lyme disease" is a familiar one. After all, it was the citizens of nearby Lyme who first brought the disease to national attention back in the 1970s.
Despite its notorious reputation -- one that is growing by leaps and bounds on a worldwide scale -- Lyme disease remains a mysterious and surprisingly controversial issue.

The degree to which Lyme disease has rocked the medical community is examined in-depth by filmmaker Andy Abrahams Wilson in his film Under Our Skin, which will be screened Thursday, Feb. 26, from 6 to 8:30 p.m., at the Fairfield Public Library, 1080 Post Road.

First identified by Willy Burgdorfer in 1981, Lyme disease is caused by a bacteria that

gets into the human body through the bite of a deer tick. For years, it has been characterized as "easy to diagnose, easy to treat," but recent findings show that Lyme often outlasts the standard two-week treatment. The spiral-shaped bacteria can drill into tissue and get into any part of the body, masking itself as a variety of other illnesses.
According to the Centers for Disease Control (CDC), each year 20,000 cases of Lyme disease are reported. Because of misdiagnosis and lack of reporting,

it is estimated that the number of Lyme disease sufferers could be as high as 200,000 people each year, making it more prevalent than West Nile or AIDS. Since 1991, the number of those infected with Lyme disease has doubled, and the CDC has classified it as an epidemic.
Commonly misdiagnosed, Lyme disease is endemic not just in the Northeast, but increasingly in every single U.S. state and it is growing in numbers worldwide. Its diagnosis and treatment have divided the medical community, stripping doctors of their licenses and leaving patients suffering for years.

Wilson's sister was diagnosed with Lyme disease years ago, but it was when he watched a friend go through diagnosis after diagnosis, including multiple sclerosis and ALS, before finally being diagnosed with Lyme and getting the treatment she needed, that his interest was sparked.

"I was shocked that Lyme disease -- that thing that seemed to be a sort of mysterious problem that my sister had -- was something that was so serious," Wilson told the Darien News. "Not only was my sister telling the truth, there were hundreds of thousands of people all over the country having the same problem."

In recent years, scientists have been able to link Lyme with a number of other diseases -- missing links that have cost thousands of people their lives, according to Under Our Skin.

This award-winning documentary has not only caught the attention of Lyme disease sufferers, but of the media and even the government -- the film has been screened more than 400 times worldwide and just this past September, was screened for members of the U.S. Congress. Wilson said that screening was standing-room-only.

Fairfield's film screening came about after one Fairfield mother, Katherine Fiol, saw the film and felt that others in the community would benefit by learning the brutal, yet crucial facts about this disease.

Fiol's first encounter with Lyme was in June 2007 when her youngest child, then 6 years old, began displaying classic symptoms of Lyme disease. Fiol's daughter tested positive for the disease, and was treated with a three-week course of antibiotics.

According to Fiol, her daughter responded well to the treatment and was soon symptom-free. Temporarily. Five months later she suffered her first of many petit mal seizures.

According to the Mayo Clinic, petit mal seizures, or "absence seizures," occur most often in children under the age of 20 and are defined as "a brief, sudden lapse of conscious activity."

After months of examinations, tests and doctor's appointments, Fiol's daughter was diagnosed with epilepsy. Despite the anti-seizure medications, however, her health continued to deteriorate, at times leaving her bedridden and unable to attend school or enjoy time with her friends.

The Fiols believed that their daughter's condition was somehow related to the Lyme disease, yet three different neurologists disagreed and continued to treat the epilepsy, even though some of the medications were eliciting extremely adverse reactions.

"It has been an unthinkable year, one of heartbreak, fear and uncertainty," Fiol wrote in an e-mail.

Through friends, the Fiols were able to get in contact with a "Lyme-literate" doctor in the area, who immediately diagnosed their daughter with "persistent Lyme disease and the co-infections bartonella and babesia."

According to Under Our Skin, ticks don't just carry Lyme and can often co-infect people with a variety of other bacteria, like bartonella, also known as "cat scratch fever," and babesia, a blood cell parasite that can cause anemia, long periods of high fever and even damage to internal organs.

Since May 2008, the Fiols' daughter has been on a consistent regiment of antibiotics to treat the Lyme and its co-infections.

"Although she is responding well, she has a very long way to go," Fiol said. "She is a brave little girl."

Even after getting proper diagnosis and treatment for their daughter, the Fiols soon discovered that Lyme wasn't through with their family. Last summer, Fiol, her husband and 13-year-old son were all diagnosed with Lyme disease.

"Each of us suffers from different symptoms, yet we are all infected," she said.

It is not uncommon for members of the same family to become infected, and in fact is an increasingly common scenario.

Her son, she explained, "normally a very bright, happy and enthusiastic 13-year-old, struggles with recurrent headaches, severe fatigue and inability to concentrate. At times he is withdrawn and feels discouraged."

She also pointed out that children are easy targets for Lyme disease.

"They spend their free time outdoors, playing, hiking, their playgrounds are set at the edge of woods. Children enthusiastically love their pets, cuddling and hugging them. These gifts of childhood significantly increase their risk of infection," Fiol said.

Under Our Skin points out that Lyme disease is often mistaken for other ailments, including fibromyalgia, rheumatoid arthritis, Crohn's disease, lupus, chronic fatigue syndrome, syphilis, multiple sclerosis, Parkinson's disease, ALS/Lou Gehrig's disease or even attention deficit disorder. Some infected with the disease exhibit no real physical symptoms, but experience extreme pain -- they are often accused of suffering from a psychological disorder.

A large reason for the continued misdiagnosis of Lyme disease is that the co-infections make it harder to treat and diagnose. A Lyme test could come back negative, but related co-infections that might not show up on tests could be causing the problems.

"If you're with a doctor that only relies on tests, you're never going to get well," Fiol warned.

For many with Lyme disease, the proper diagnosis still isn't enough to help them get better. Doctors who specialize in Lyme are often criticized by the medical community for treating the disease in a way that is inconsistent with the treatment recommendations of the Infectious Diseases Society of America (IDSA).

In 2006, the IDSA released

recommendations that Lyme be treated a with two-week course of antibiotics. Doctors who have studied Lyme treatments say that's not enough time and insist that the disease can -- and usually does -- take much longer to treat. Some of the documentary subjects spent more than 10 years and hundreds of thousands of dollars trying to get better.

Because of the IDSA recommendations, many insurance companies will not cover any treatments beyond the initial two-week therapy.

Under Our Skin also points to

financial conflicts of interest, with regard to Lyme disease, for the majority of people on the IDSA's panel of experts, some of whom have patents pending for their own Lyme treatment ideas.

Last year Connecticut Attorney General Richard Blumenthal launched an investigation into the IDSA and its panel's possible conflict of interest. The investigation exposed "serious flaws in the Infectious Diseases Society of America's process for writing its 2006 Lyme disease guidelines," according to the attorney general's office. In response, the IDSA agreed to take another look at its recommendations using the help of outside sources.

Blumenthal said in a press release, "The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science."

"As citizens, we ought to be astonished and alarmed," he said in an on-camera address in Under Our Skin.

Doctors' dilemmas

Doctors who advocate the treatment of Lyme with long-term antibiotics have had a tough time. Dr. Joseph Jemsek of North Carolina, lost his license for a year, and later went bankrupt and had to close his clinic after being sued by an insurance company for $100 million.

Dr. Joseph Burrascano Jr. -- a self-proclaimed "Lyme warrior" -- closed down his East Hampton, N.Y., practice for fear of persecution after he was "hauled before the New York Medical Review Board," according to the documentary.

In nearby New Haven, Dr. Charles Ray Jones has the distinction of being "the only pediatrician in the world who treats Lyme patients," according to Under Our Skin. The 79-year-old has treated more than 10,000 children who have been debilitated by Lyme disease. He now faces criminal charges stemming from the complaints of a divorced father disputing the cost of his children's medical bills -- despite the fact that the health of both children continued to improve after Jones' treatment. The second round of medical hearings on Jones was held Jan. 6.

Fairfield state Rep. Kim Fawcett (D-Fairfield, Westport) this year introduced legislation (House Bill 5625, An Act Concerning the Use of Long-Term Antibiotics for the Treatment of Lyme Disease), which she hopes will protect doctors who are currently treating Lyme disease, including allowing them to provide long-term antibiotic treatments.

Last year, Fawcett's husband was diagnosed with Lyme disease, and she said she got a first-hand picture of what Lyme sufferers have to go through.

"The bill changes public health policy and clarifies a doctor's right to diagnose and treat this disease; it does not cost the state any money or create any type of new program," Fawcett said in a press release.

Fawcett's bill is awaiting a vote from the Public Health Committee, which will determine whether it will go to the House floor for consideration.

But Wilson thinks the problem can't be solved from the top down. Legislation can't be effective until the community has an acute awareness of the problem, he said.

"The sooner we get the awareness about the severity of this issue, the sooner we're going to take it seriously as a society," he said. "It's not enough to have a movie and put it in theaters. We want to use the film as an instrument of change."

Despite the ongoing controversy, research on Lyme disease continues to progress, and one scientist, Dr. Alan MacDonald, has made a number of discoveries that he hopes will catch the attention of the medical community. His research has uncovered a distinct link between Lyme and Alzheimer's disease, ALS/Lou Gehrig's disease, multiple sclerosis and Parkinson's disease. According to MacDonald's research, many times, Lyme could be a contributing factor in those diagnoses.

Even newer research is looking into whether Lyme, like its cousin syphilis, could be sexually transmitted.

Fiol's children continue to get better, but the doctors have made it clear that the road to recovery will be a long one.

"[My daughter] has a very long way to go and it could be years. She has really good days and really bad days and this will continue for a while," Fiol said.

Going forward, Fiol hopes to bring the information to area schools, and has already contacted her own children's teachers to alert them to potential problems.

"Students suffering from Lyme and co-infections present a unique situation in school. They suffer from a variety of symptoms that come and go, they look healthy, are often misunderstood and considered to be faking," she wrote in an e-mail to the teachers.

She explained that the disease could affect the students academically by limiting their ability to focus, and it could affect them socially because they frequently miss school.

"Teaching children with Lyme disease requires flexibility and understanding," she said.

In reaching out to the community, Fiol has enlisted the help of Karen Guadian from the Ridgefield Lyme Disease Task Force; Jennifer Reid, community coordinator for the Fairfield County BLAST Lyme Disease Prevention Program; and members of the Newtown Lyme Disease Task Force.

Fiol said she hopes people will take the time to educate themselves about Lyme disease before it has the chance to become a costly and debilitating problem.

"It's awful that you have to learn about it when everyone's sick," she said.

To register for the film screening, or for more information, e-mail Fair fieldLymeResource@hotmail.com. Seating is limited and interest in the film has been strong, but Fiol hopes to have an additional screening next month in another town nearby.

For more information on Under Our Skin or other Lyme disease-

related news items, visit www.under ourskin.com.

"My hope is to educate as many parents as possible," Fiol said. "My motivation is the thought that I might help one family avoid the devastating effects of Lyme disease. My inspiration is [my daughter]; her determination, bravery and spirit knows no bounds."

Wilson said he hopes people understand the urgency.

"We're talking about something that's life-saving. It's not just an important story, it's a life-and-death issue that needs to be addressed," he said. "I'm not just making a movie, I'm making a movement."



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