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Film brings to screen controversy surrounding Lyme disease
Andrew Amelinckx
A documentary film that is helping bring to light the controversy surrounding Lyme disease will be coming to the area considered “ground zero” due to the number of cases that have occurred here.
The 2008 documentary “Under Our Skin” by producer, director and cinematographer Andy Abrahams Wilson will be showing at Time and Space Limited in Hudson beginning Aug. 13 and running through Aug. 22.
The film centers on Chronic Lyme disease — a controversial diagnosis that has split the medical community and the people affected by this “emerging epidemic larger than AIDS.”
Lyme disease is a multi-system bacterial illness caused by the spirochete Borrelia burgdoferi, which lives in the bodies of wild animals and is transmitted to humans through the bite of an infected tick. The disease can cause abnormalities in the skin, joints, heart, and nervous system.
According to the New York state Department of Health, Columbia County has the highest rate of Lyme disease in the state, based on data that includes the years 2004 through 2007, with 558.6 reported cases per 100,000 people. Dutchess County comes in second with 325.1 and Greene County third with 284.3.
These numbers are possibly larger by up to 15 times, according to the Lyme Disease Foundation, because of underreporting.
Testing is another issue. According to a number of sources, including the Canadian Lyme Disease Foundation, tests aren’t very accurate because each test “has its own particular set of shortcomings.”
The disease was discovered in 1975 when the mothers of several children who lived near each other in Lyme, Conn., made researchers aware that all the children had been diagnosed with rheumatoid arthritis. This eventually led researchers to identify the disease in 1982.
According to Wilson, many in the medical establishment do not believe there is such an illness as Chronic Lyme disease. “They just say it’s normal aches and pains,” he said.
The film interviews a number of people who had been told the pain they were suffering was all in their head.
On the other side of the issue is the Infectious Diseases Society of America and its 2006 Lyme disease guidelines.
The organization represents physicians, scientists and other health care professionals who specialize in infectious diseases.
The IDSA’s guidelines are the standard by which the medical establishment generally goes by, as do many state departments of health, including New York.
But according to Dr. Eugene Shapiro from the Yale School of Medicine in New Haven, Conn., who is a member of the IDSA, doctors aren’t forced to use the guidelines.
“Using the guidelines is voluntary,” he said.
They may be voluntary but the Connecticut Attorney General, Richard Blumenthal, who conducted an antitrust investigation against the organization last year, said the guidelines have “significant impacts” on Lyme disease medical care and are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care. The guidelines also “strongly influence physician treatment decisions,” according to the report.
“Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification,” the attorney general’s report stated.
“The guidelines are also widely cited for conclusions that Chronic Lyme disease is nonexistent,” the attorney general’s report goes on to state.
Shapiro said that the problem in that regard is that there is no current medical definition of Chronic Lyme disease.
“It’s up to the physician or medical practitioner to tell you have it,” he said, adding that there have been a number of reported cases in states where the tick vector isn’t found.
Shapiro said that he wasn’t denying that there were people who were suffering and that they deserved “sympathy and compassion.” He was only refuting that long-term use of antibiotics is effective for treating them.
In 2000, an IDSA panel found that that there was insufficient evidence to regard Chronic Lyme disease as a separate diagnostic entity.
According to Shapiro, the IDSA’s guidelines don’t really deal with Chronic Lyme disease but rather speak to the long-term use of intravenous antibiotics.
“There’s no benefit or minimal benefit,” he said, citing a number of studies. Beyond that, Shapiro believes that the long-term use of intravenous antibiotics is dangerous and can lead to everything from blood clots to infections at the point where the needle enters the body.
“People have died from it,” he said.
The IDSA’s recommended treatment is for no more than four weeks of antibiotic treatment in Lyme disease cases.
The International Lyme and Associated Infectious Disease Society, which is the leading organization in opposition to the IDSA, disagrees.
ILADS, in a separate review of the same evidence used by the IDSA, concluded that Chronic Lyme disease does exist and that four weeks of antibiotics often isn’t enough to kill the bacteria.
The debate may be moot due to the Attorney General’s Office, which determined there were “serious flaws” in the process for writing the guidelines, including a number of conflict of interest issues from the 14-member panel made up of IDSA members. This included having several members tied to the insurance industry and others holding patents associated with Lyme disease or its co-infections.
The IDSA agreed to reassess its guidelines with the assistance of an outside arbiter.
According to John Heys, a spokesman for the IDSA, this was one of several steps the panel would be taking before making their recommendations, which he said, he hoped would be ready by the end of the year.
On July 30, an IDSA special review panel met in Washington D.C with scientists who study Lyme disease and physicians who treat it.
There were 18 presenters, including six from ILADS, including Dr. Daniel Cameron, an internist, epidemiologist and attending physician at Northern Westchester Hospital in Mount Kisco. He is the president of ILADS and has been treating Lyme disease patients for more than 17 years.
He said he thought the meeting went well.
It was the first time in a very long time, he said, in which representatives from ILADS and the IDSA have been together in the same place.
Cameron felt that they were able not only to refute the IDSA guidelines but were also able to present their own findings and explain their recommendations for Chronic Lyme disease treatment.
Heys said that the special panel can take one of three steps now: The first would to make no change in the guidelines, the second would be to partially revise certain sections, while the third option would be to recommend a complete re-write of the 2006 IDSA guidelines.
“The IDSA would convene a new panel to revise or rewrite the guidelines,” he said.
For “Under Our Skin” showtimes, call TSL at 518-822-8100 or check online at
www.timeandspace.org
To reach reporter Andrew Amelinckx, call 518- 828-1616, ext. 2267 or e-mail aamelinckx@registerstar.com.
A documentary film that is helping bring to light the controversy surrounding Lyme disease will be coming to the area considered “ground zero” due to the number of cases that have occurred here.
The 2008 documentary “Under Our Skin” by producer, director and cinematographer Andy Abrahams Wilson will be showing at Time and Space Limited in Hudson beginning Aug. 13 and running through Aug. 22.
The film centers on Chronic Lyme disease — a controversial diagnosis that has split the medical community and the people affected by this “emerging epidemic larger than AIDS.”
Lyme disease is a multi-system bacterial illness caused by the spirochete Borrelia burgdoferi, which lives in the bodies of wild animals and is transmitted to humans through the bite of an infected tick. The disease can cause abnormalities in the skin, joints, heart, and nervous system.
According to the New York state Department of Health, Columbia County has the highest rate of Lyme disease in the state, based on data that includes the years 2004 through 2007, with 558.6 reported cases per 100,000 people. Dutchess County comes in second with 325.1 and Greene County third with 284.3.
These numbers are possibly larger by up to 15 times, according to the Lyme Disease Foundation, because of underreporting.
Testing is another issue. According to a number of sources, including the Canadian Lyme Disease Foundation, tests aren’t very accurate because each test “has its own particular set of shortcomings.”
The disease was discovered in 1975 when the mothers of several children who lived near each other in Lyme, Conn., made researchers aware that all the children had been diagnosed with rheumatoid arthritis. This eventually led researchers to identify the disease in 1982.
According to Wilson, many in the medical establishment do not believe there is such an illness as Chronic Lyme disease. “They just say it’s normal aches and pains,” he said.
The film interviews a number of people who had been told the pain they were suffering was all in their head.
On the other side of the issue is the Infectious Diseases Society of America and its 2006 Lyme disease guidelines.
The organization represents physicians, scientists and other health care professionals who specialize in infectious diseases.
The IDSA’s guidelines are the standard by which the medical establishment generally goes by, as do many state departments of health, including New York.
But according to Dr. Eugene Shapiro from the Yale School of Medicine in New Haven, Conn., who is a member of the IDSA, doctors aren’t forced to use the guidelines.
“Using the guidelines is voluntary,” he said.
They may be voluntary but the Connecticut Attorney General, Richard Blumenthal, who conducted an antitrust investigation against the organization last year, said the guidelines have “significant impacts” on Lyme disease medical care and are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care. The guidelines also “strongly influence physician treatment decisions,” according to the report.
“Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification,” the attorney general’s report stated.
“The guidelines are also widely cited for conclusions that Chronic Lyme disease is nonexistent,” the attorney general’s report goes on to state.
Shapiro said that the problem in that regard is that there is no current medical definition of Chronic Lyme disease.
“It’s up to the physician or medical practitioner to tell you have it,” he said, adding that there have been a number of reported cases in states where the tick vector isn’t found.
Shapiro said that he wasn’t denying that there were people who were suffering and that they deserved “sympathy and compassion.” He was only refuting that long-term use of antibiotics is effective for treating them.
In 2000, an IDSA panel found that that there was insufficient evidence to regard Chronic Lyme disease as a separate diagnostic entity.
According to Shapiro, the IDSA’s guidelines don’t really deal with Chronic Lyme disease but rather speak to the long-term use of intravenous antibiotics.
“There’s no benefit or minimal benefit,” he said, citing a number of studies. Beyond that, Shapiro believes that the long-term use of intravenous antibiotics is dangerous and can lead to everything from blood clots to infections at the point where the needle enters the body.
“People have died from it,” he said.
The IDSA’s recommended treatment is for no more than four weeks of antibiotic treatment in Lyme disease cases.
The International Lyme and Associated Infectious Disease Society, which is the leading organization in opposition to the IDSA, disagrees.
ILADS, in a separate review of the same evidence used by the IDSA, concluded that Chronic Lyme disease does exist and that four weeks of antibiotics often isn’t enough to kill the bacteria.
The debate may be moot due to the Attorney General’s Office, which determined there were “serious flaws” in the process for writing the guidelines, including a number of conflict of interest issues from the 14-member panel made up of IDSA members. This included having several members tied to the insurance industry and others holding patents associated with Lyme disease or its co-infections.
The IDSA agreed to reassess its guidelines with the assistance of an outside arbiter.
According to John Heys, a spokesman for the IDSA, this was one of several steps the panel would be taking before making their recommendations, which he said, he hoped would be ready by the end of the year.
On July 30, an IDSA special review panel met in Washington D.C with scientists who study Lyme disease and physicians who treat it.
There were 18 presenters, including six from ILADS, including Dr. Daniel Cameron, an internist, epidemiologist and attending physician at Northern Westchester Hospital in Mount Kisco. He is the president of ILADS and has been treating Lyme disease patients for more than 17 years.
He said he thought the meeting went well.
It was the first time in a very long time, he said, in which representatives from ILADS and the IDSA have been together in the same place.
Cameron felt that they were able not only to refute the IDSA guidelines but were also able to present their own findings and explain their recommendations for Chronic Lyme disease treatment.
Heys said that the special panel can take one of three steps now: The first would to make no change in the guidelines, the second would be to partially revise certain sections, while the third option would be to recommend a complete re-write of the 2006 IDSA guidelines.
“The IDSA would convene a new panel to revise or rewrite the guidelines,” he said.
For “Under Our Skin” showtimes, call TSL at 518-822-8100 or check online at
www.timeandspace.org
To reach reporter Andrew Amelinckx, call 518- 828-1616, ext. 2267 or e-mail aamelinckx@registerstar.com.
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HudsonValleyNomad wrote on Aug 10, 2009 12:07 AM: