Dec 6, 2006 Lyme disease documentary screened in Wilton By Jeff Yates
The Wilton Bulletin
Mandy, a bride-to-be, plans her wedding day in Florida. The signs of her illness are absent at the time, but later wrack her body with tremors, and cause her to become immobile while her husband-to-be holds an icepack to her forehead.
This was one of the opening scenes of the documentary film Under Our Skin: The Untold Story of Lyme Disease, a 35-minute sample clip that was screened last week at the Wilton Library to more than 50 people.
A product of Open Eye Pictures in California, the film traces the path of the impact that Lyme disease has had on people across the country, following many who have developed serious neurological disorders they attribute to one small tick bite. It also interviews doctors and scientists discussing the science behind the disease, which has caused a split among doctors. Some claim the disease is overdiagnosed and treated, others say it is under-reported, and is linked to other diseases such as Alzheimer’s, and has caused miscarriages in women who have contracted the virus.
“My sense is that in the Northeast there’s more awareness of Lyme disease, but people still don’t understand what it is,” said Andy Abrahams Wilson, producer and director of the film.
Mr. Wilson has crossed the country documenting the struggles of those afflicted with Lyme, filming people such as a former park ranger in the West who has spent nearly $100,000 on medication to fight his disease when a $25 bottle of Doxycycline at the time of his infection may have been enough to knock down the illness. There are others, as well, including Elise from Danbury who has Lyme disease and believes it caused her two miscarriages, one after nine weeks, the other 18 weeks into her pregnancy. Her second miscarriage, she said, was the first documented case of Lyme being passed from the mother to the fetus through the placenta.
The screening was hosted by the National Research Fund for Tick-Borne Diseases Inc., a Wilton group funding research and trying to raise awareness on the issue and, on this night, helping Open Eye Pictures raise money to finish editing the nearly 300 hours of footage it has collected. The production company still needs about $200,000 to finish the film, which it hopes to release as a television documentary nationwide.
Following the film, Dr. Steven Phillips of Wilton took questions from the audience on Lyme disease, discussing why it is a controversial subject in the scientific community, and how it can be treated.
“If you randomly sample people in Lyme endemic areas and test their blood, there’s about a 9% to 12% chance they will test positive,” said Dr. Phillips.
The problem with Lyme, he said, is there are 300 strains of the disease, and the virus can mimic many other diseases, leading to misdiagnosis. This theme of misdiagnosis was carried out in the film, as well, with testimonials from Lyme patients who had been told they had everything from lupus to MS to ALS, and many who were told by doctors their symptoms were psychosomatic — that they were subconsciously making them up to get attention. Dr. Phillips said 40% of lupus patients test positive for Lyme, and there is also a significant number of Alzheimer’s patients who, after their death, had Lyme disease present in their brain cells.
“Lyme can kill people, it’s true,” said Dr. Phillips. “I think a lot of the deaths attributed to Lyme don’t get put down as Lyme. If it can infect any cell in the body, then it can cause any possible symptom.”
Dr. Phillips said there are a lot of myths about Lyme disease, and many are perpetuated due to the division in the medical community over the prevalence and danger of an infection. People can get Lyme disease multiple times, he said. The disease can be knocked down with antibiotics, but a “significant minority” of patients, anywhere from 25% to 30%, will show symptoms after a month of heavy antibiotic treatment.
“There’s definitely a lot of ego in science,” said Dr. Phillips. “A lot of science is not very scientific.”
People attending the screening shared some of their frustrations dealing with the medical community, and trying to find a doctor who would first diagnose Lyme, and second, treat it.
“No doctor will treat you,” said one woman, in tears after telling how she had a late-term miscarriage, and is worried the disease may have been transmitted to her two children, ages three years and eight months.
“I don’t know what to do,” she said. “Do I get them tested? What do I do?”
Dr. Phillips said as long as the children do not appear ill, and are not showing symptoms of Lyme, testing them would not be needed. Many people, he said, have Lyme disease, but have no symptoms, and there’s no reason for treating the disease with antibiotics if there are no symptoms to cure.
One of the challenges facing doctors, like himself, who believe there is a Lyme epidemic and that there are many things about the disease that are not understood, is that those doctors on the “pro-Lyme” side, as Dr. Phillips called it, have mountains of clinical research, while others find they can’t get their work published in peer reviewed scientific journals.
Another problem is the issue of ethics, said Dr. Phillips. It’s hard to design a study that would definitively say that Lyme in pregnant women can cause miscarriages, because there’s no ethical way to set up a clinical trial. If doctors believe that Lyme may cause a miscarriage, they can’t simply refuse to treat a pregnant woman, just to measure the differences between her pregnancy and those of women who are being given antibiotics, he said.
In his mind, however, there is no question that Lyme is often misdiagnosed, is a spreading problem and is an epidemic disease, said Dr. Phillips.
“There’s a map... from the U.S. Census Bureau, of tick bite followed by death, and MS followed by death, county-by-county, and it’s almost an exact overlap,” he said.
Information: lymediseasefilm.com; nrftd.org
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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I am so looking forward to seeing this documentary! Anyone know when it will be released?
Also, as a journalism student, I would get a 0.0 on an article if I called a bacteria a virus. Hands down. It really irks me to see mistakes of this magnitude that are published!!
Posts: 106 | From Michigan | Registered: Oct 2006
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ping
Frequent Contributor (1K+ posts)
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quote:Originally posted by notcrazykate: I am so looking forward to seeing this documentary! Anyone know when it will be released?
Also, as a journalism student, I would get a 0.0 on an article if I called a bacteria a virus. Hands down. It really irks me to see mistakes of this magnitude that are published!!
Thank you very much! It's misunderstandings like this that add fuel to the already unfriendly medical community fire. Microbiology 101.
"We are more than containers for Lyme." ping
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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beachcomber
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The film is still in production, due to much needed funding. I have shared my copy with healthcare providers and activists in my area for about a year now (hoping to raise funds). Not to worry - the film is pretty clear about this "bacterial infection" not a "virus".
It's pretty amazing to see reactions from the non-infected. The comment I mostly hear is "I had no idea.....".
Spread the word. This will air on HBO, in partnership with PBS, when it is finished.
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by beachcomber: The film is still in production, due to much needed funding. I have shared my copy with healthcare providers and activists in my area for about a year now (hoping to raise funds). Not to worry - the film is pretty clear about this "bacterial infection" not a "virus".
It's pretty amazing to see reactions from the non-infected. The comment I mostly hear is "I had no idea.....".
Spread the word. This will air on HBO, in partnership with PBS, when it is finished.
Bc
Bc - Thanks for the additional info. Didn't mean to fuss. I know they're hurting for funding. Please keep us all updated regarding what date this film will be released onto PBS stations. Wish there was more I could do at this time, but, I'm flat busted...
"We are more than containers for Lyme." ping
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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