posted
Good job, lakes!! I'll leave my comments later tonight.
It IS a great article!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
good article, lakes. thnx.
(Gotta watch out for dem "ineffective" Ticks, now )
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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bettyg
Unregistered
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ann, this is posted elsewhere as i copied it here and broke it up earlier, but just copying it AS IS without breaking it up so i can read other stuff i missed earlier today answering all the llmd/welcome letters to newbies.
Lyme Disease: It may be "under your skin"
By Andrew Amelinckx
When Karyn Schassler saw a screening of the 2008 documentary ``Under Our Skin'' at the Chatham Film Festival last October she came to a startling conclusion: Her husband was suffering from Chronic Lyme Disease.
Steven Schassler, an assistant district attorney and civil engineer from Columbia County, had been experiencing a number of symptoms that included body aches and lethargy, which seemed to come and go throughout the year. He had been treated for Lyme in the past and had been given a clean bill of health, but continued to feel rundown and had shortness of breath.
*
After his wife told him about the movie he began looking more deeply into Chronic Lyme Disease -- a controversial diagnosis that has split the medical community -- and was later re-tested. ``It came back positive,'' he said. ``And it was off the charts.''
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 ineffective tick, according to the Lyme Disease Foundation.
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 2006, with 597.8 reported cases per 100,000 people.
Dutchess County comes in second with 384.8 per 100,000. Greene County is third with 246.2.
These numbers are possibly larger because of underreporting. ``The disease case count is likely to be 13 to 15 times higher,'' according to the Lyme Disease Foundation. ``However, those are the cases that fit the government's narrow case reporting criteria. The true number of cases may be significantly higher.''
Testing for the disease could also be responsible for underreporting. According to the Canadian Lyme Disease Foundation, the tests for Lyme aren't even ``close to 100 percent accurate, because each test has its own particular set of shortcomings.'' Another problem with diagnosis is the fact that ``the Lyme spirochete can hide in the human body and fool the immune system into thinking it isn't there. So no antibodies are produced, resulting in negative tests,'' again from the CLDF Web site.
Another problem with the disease is the many co-infections that can occur, which can interfere with its clinical diagnosis.
The disease wasn't discovered until 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 Schassler, and others, many in the medical establishment do not believe there is such an illness as Chronic Lyme Disease. ``They just say its normal aches and pains,'' he said.
The film ``Under Our Skin,'' that helped Schassler toward a better understanding of Lyme, explores the controversy swirling around this ``emerging epidemic larger than AIDS,'' in the words of the film's producer, director and cinematographer, Andy Abrahams Wilson.
Wilson, 45, said that like the Schasslers, others have also come away from his film realizing they may still be suffering from Lyme. ``It's not uncommon,'' he said.
Wilson's journey toward making his film began years ago when his twin sister in Woodstock was diagnosed with Lyme. He said that he mistook her sickness for laziness. ``I started to think maybe she was faking it,'' he said. His sister eventually recovered.
Later, a friend of his was in California was told she had Multiple Sclerosis and Amyotrophic lateral sclerosis, known as Lou Gehrig's Disease, but was later diagnosed with Lyme Disease.
Wilson said the problem with the disease is that it mimics other diseases, including fibromyalgia, chronic fatigue, lupus, RA, autism, MS, Parkinson's and ALS.
``I was shocked at what Lyme could do,'' he said. ``If I was so surprised, other people would be as well.''
When he began the film he had no preconceived notions about the disease and the underlying fight within the medical community. ``I did not come to the project as an activist,'' said Wilson. ``But I became an activist.''
Wilson, after spending four years on the project, shooting 375 hours of film and interviewing hundreds of people, became convinced that the disease was only part of the problem. The medical establishment, insurance companies and the medical research industry were also to blame for the epidemic.
The organization that appears to be at the heart of the matter is the Infectious Diseases Society of America and its 2006 Lyme disease guidelines. The IDSA, according to its Web site, 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.
Beth Goldberg, a spokesperson for the NYSDOH, said the department neither produces Lyme disease guidelines nor its own research on the subject. She said that when asked, the department refers people to peer-reviewed research from the Centers for Disease Control, the National Institutes of Health and the IDSA.
According to Connecticut Attorney General Richard Blumenthal, who conducted an antitrust investigation against the organization last year, there were ``serious flaws'' in the process for writing the guidelines.
The AG's office 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 guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent,'' it stated.
The 14-member panel, made up of IDSA members, had a number of conflict-of-interest issues, with several members tied to the insurance industry and others holding patents associated with Lyme disease or its co-infections.
``It's an old-boy network,'' said Wilson.
The IDSA agreed to reassess its guidelines with the assistance of an outside arbiter.
In order to prevent conflict-of-interest issues from arising, a $10,000 limit on income received from ``products or concepts'' related to Lyme was put in place. But some on the other side of the issue -- the doctors who treat Chronic Lyme Disease -- aren't happy about the stipulation.
Dr. Daniel Cameron, who has been treating Lyme disease patients for more than 17 years, said he feels that the stipulation will prohibit the panel from including what patients refer to as ``Lyme-literate doctors.''
``Any doctor who sees a Lyme patient ... unless they have a very small practice, would be turned down for the committee,'' he said, and speculated that the panel would have more academics than clinicians on it.
`We're just looking for dialogue,'' he said, adding that the patients and doctors dealing with the disease need to have a voice in the guideline process.
The internist, epidemiologist and attending physician at Northern Westchester Hospital in Mount Kisco is the president of the International Lyme and Associated Diseases Society, the leading organization in opposition to the IDSA on matters of Lyme disease.
ILADS Lyme guidelines differ greatly with those of the IDSA, especially in matters of long-term treatment for the disease.
According to Cameron, the 2000 IDSA panel found that that there is ``insufficient evidence to regard `Chronic Lyme Disease' as a separate diagnostic entity'' and that ``there are no convincing published data showing that repeated or prolonged courses of oral or intravenous antimicrobial therapy are effective for such patients.''
Four years later, ILADS, in a separate review of the same evidence, came to a much different conclusion -- that Chronic Lyme Disease does, in fact, exist.
It also concluded that the recommended IDSA treatment of two to four weeks of antibiotics often isn't enough to kill the bacteria.
``ILADS also determined that there is sufficient evidence to treat select LD cases for more than four weeks,'' Cameron stated.
The 2006 IDSA panel's Lyme guidelines, according to Cameron, didn't mention the existence of the ILADS' guidelines and did nothing to reconcile the two organizations' findings. These guidelines also advised against antibiotic treatments of more than two to four weeks.
Cameron said that the costs of Chronic Lyme Disease, as determined in a study by Dr. Xinzhi Zhang, are quite large. ``The annual average per-patient cost for CLD patients in the U.S. has been estimated to be $1,872 for direct medical costs and $14,327 for indirect medical costs, non-medical costs and productivity losses,'' he stated.
The IDSA is currently in the midst of a public input period until April 24. Anyone interested in submitting information can e-mail contact information, issues, concerns and relevance to the 2006 IDSA Lyme Disease guidelines and issues not covered in the guidelines, with a reference list of supporting data, if available, to [email protected], attention of the IDSA Lyme Disease Review Panel.
A public meeting that was set for April 27 in Washington, D.C. in which the IDSA will hear oral and written testimony has been postponed as of Friday with no new date provided. The reason given was ``to allow potential presenters more time to prepare and make travel arrangements.''
Members of the public will be able to view the hearing live on the IDSA Web site when it occurs.
Schassler said he was being tested for co-infections and was continuing to deal with the disease. ``I'm going to get to the bottom of this thing,'' he said.
To reach reporter Andrew Amelinckx please call 518-828-1616, ext. 2267, or e-mail [email protected]. ***********************************
Reader Comments The following are comments from the readers. In no way do they represent the view of TheDailyMail.net .
RiverRider wrote on Mar 30, 2009 3:24 AM:
" As one who has been misdiagnosed also, I sympathize greatly with other sufferers. I would also like to share the following information: The US government has already publicly admitted that Lyme Disease is a biological weapon that they developed. Diseases which can be genetically engineered to be spread through insect vectors are particularly focused on by their "mad scientists" because the resulting symptoms can be blamed upon Nature ( the insect kingdom in this instance) while the real perpetrators (the govn bio-war labs) remain hidden.
For those who seek more info I suggest the following links :
I have had good results using vitamin and herbal supplements for energy and healing, and for me personally, I had much better results with the herbs in particular, in giving me strength and vigor, than I did with any pharmaceutical prescription.
Educate yourself about NATURAL HEALING and explore what works best for YOU, don't just blindly take your Doctor's advice !
best of luck and health to you ~
R.R. "
Freethinker wrote on Mar 30, 2009 8:04 AM:
" Please go and see the patents many of the IDSA/CDC personnel own, and how they narrowed the disease defination of Lyme to profit off the sick and dying.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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