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Under Our Skin: The Untold Story of Lyme Disease.

On Saturday, September 27, 2008

the Fullness of Life Foundation hosted the first Arizona screening of Under Our Skin, a documentary film about the untold story of Lyme disease.

Lyme disease is the most common insect-borne disease in America and is one of the fastest growing infectious diseases in the country. According to the Centers for Disease Control (CDC), while about 20,000 new cases of Lyme disease are reported each year, it is estimated that there are actually over 200,000 new cases per year. This number is greater than the number of cases of AIDS, West Nile Virus, and the Avian Flu combined. Cases are so grossly underreported due to a number of factors, including: inaccurate testing, the fear by treating physicians that they will be subject to medical board scrutiny, and physician ignorance regarding how the disease is transmitted and its clinical diagnosis. According to the CDC, the NIH, and the FDA, Lyme disease should not be ruled out based on tests alone. Instead, Lyme diagnoses should be based on clinical signs, symptoms, history, exposure risk, course of illness, and testing should play only a supportive role. Conditions such as Fibromyalgia, Chronic Fatigue Syndrome, multiple sclerosis, ALS, Parkinson's, and Alzheimer's, as well as some 350 different diseases, have symptoms similar to Lyme disease. Known as "the great imitator," the total number of symptoms associated with Lyme disease can total around 100. Lyme disease can also carry with it many co-infections that will interfere with its clinical diagnosis. Prolonged and intense treatment is often needed to rid the body of the disease if it is not caught in its initial stages. Still, the medical establishment, with input from the insurance industry, has stated that the disease is easily detectable and treatable, and that chronic Lyme disease does not exist. About 250 people attended the Arizona screening of this eye-opening film. After the showing, Envita's Chief Medical Officer, and owner of private practice New Life Medical Inc. Dr. David C. Korn, D.D.S., D.O., M.D.(H), an expert in the diagnosis and treatment of Lyme disease, and Dr. Stephen E. Fry, M.D., a Lyme researcher for over 14 years, were on-hand to answer questions from the audience. Also in attendance was the film's senior producer, Kris Newby, who introduced the premier. Kris is an award-winning screenwriter and science writer, with engineering degrees from Stanford and the University of Utah. She also has first-hand experience with Lyme disease. Both she and her husband were infected with it. But it took them 10 doctors and $60,000 to get diagnosed properly. Their tests came back positive twice, but they were told by doctors that the chances that they both had it were like winning the lottery. They were told that they instead were suffering from a couple's psychosomatic illness. Kris found out that she and her husband were not the only ones who were told that their debilitating symptoms were "all in their heads." Kris was appalled at the way Lyme patients were being treated and misdiagnosed. After her experiences and struggles with a medical system that refused to acknowledge her illness, she could not just go back to life as usual and pretend as if her experience was an unfortunate but isolated incident. She had to do something about it. Together with Andy Abrahams Wilson, the film's producer, director, and cinematographer, Kris began a four-year, $700,000 project of making the documentary. Andy's twin sister had also been diagnosed with Lyme disease and similarly battled physician ignorance and hostility in her quest for proper diagnosis and treatment. We were blown away by the film. Kris and Andy traveled to every corner of the United States interviewing Lyme patients and physicians to tell their stories. The documentary follows seven patients and four physicians as they battle for their lives and livelihoods amidst a health care system that is unwilling and unable to cope with the silent epidemic of Lyme disease. Interspersed throughout the film are head shots and sound bites from countless other Lyme sufferers. The film's greatest testimony to the dire need for proper diagnosis and treatment came from its featured patients. The difference in the patients who were able to find Lyme-literate physicians to treat them, and their amazing but arduous roads to recovery stood in stark contrast to those patients who were unable to find help. The film's worst case scenario of untreated neurological Lyme was a young man named Jared Shea, who is now confined to a wheelchair and is unable to speak after no doctor would diagnose or treat him, instead ascribing his problems to an "unknown etiology." The film also takes a terrifying look at the politics of the disease, including the 14-member panel that wrote the 2006 Lyme disease treatment guidelines. This panel was made up of members of the Infectious Disease Society of America (IDSA), a national medical group whose purpose, according to its website, is to improve healthcare in areas related to infectious diseases. But these guidelines have been widely criticized as inadequate and disastrous for those infected with the disease. Patient advocates maintain that insurance companies use the guidelines to deny payment for long-term antibiotic use. According to a recent John-Hopkins study, the IDSA-endorsed two-tiered testing procedure misses 75% of positive Lyme cases. (1) The guidelines also recommend only two weeks of antibiotic treatment for Lyme disease, yet research has shown that antibiotic treatment for 14 to 21 days results in a 26-50% failure rate, as the stubborn disease-causing bacteria persists much longer in the body. (2), (3) The guidelines also negate the existence of chronic Lyme disease, with one panel member instead characterizing it as "more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection." Out of the 400 scientific articles cited by the panel as support for their guidelines, about half were written by the panel members themselves. Meanwhile, a large body of contradictory scientific literature was ignored. The Attorney General of Connecticut, Richard Blumenthal, even conducted an anti-trust investigation of the IDSA, suspecting that the guidelines process was tainted by the panel members' conflicts of interest. Out of the 14 member panel, 6 of the panelists or their universities hold patents associated with Lyme disease or its co-infections; 4 received funding from test kit manufacturers for Lyme disease or its co-infections; 4 were paid by the insurance companies to write Lyme policy guidelines or serve as consultants in legal cases; and 9 members or their universities received money from Lyme disease vaccine manufacturers. Allowing diagnostic and treatment guidelines to be written by panel members who are tied to manufacturers that have a stake in the outcome raises serious and obvious concerns. Equally horrific was the film's glimpse into the lives of a handful of Lyme-literate physicians. Most were hauled before their medical licensing boards in a stupendous display of political showmanship and corruption. Their hearings were nothing more than procedural formalities; the outcomes and the fate of their medical licenses had already been determined as soon as they became known as prominent Lyme physicians. One doctor, Dr. Joseph Jemsek, M.D., was rejected from serving on the Lyme disease guidelines writing panel, despite the fact that he was one of the leading Lyme-literate private-practice physicians in the southern United States. Instead, he was charged by the North Carolina Medical Board for improperly diagnosing several patients with Lyme disease and offering controversial intravenous antibiotic treatments. He was officially sanctioned by the Board, and as the result of having to defend himself against the various accusations against him, ended up bankrupt and had to move his practice to South Carolina. The film concluded its story on Dr. Jemsek by reporting that he was recently sued by Blue Cross Blue Shield of North Carolina for $100 million for his treatment of Lyme patients. The majority of the medical complaints against Lyme physicians such as Dr. Jemsek are not from patients, but from insurance companies trying to get rid of doctors that cost them too much money. The end result of these witch hunts is that patients are losing access to the only physicians who can save their lives. The Arizona screening of Under Our Skin was just one of many that have taken place all across the United States. Even though Kris and Andy are still looking for a distributor for the film, it has already been shown in over 100 locations simply due to the grassroots efforts of Lyme patients who believe, as Andy does, that "Awareness literally will save lives." These patients have taken it upon themselves to host their own screenings for their communities. One of the most recent screenings took place at the Russell Senate Building on Capitol Hill. Andy played excerpts of the film for a standing-room only crowd during an historic congressional lunch-hour briefing. Legislators were invited to a full screening of the film at the Avalon Theater in DC the following day. Andy then flew to the Camden International Documentary Film Festival, in Rockland, Maine, where the film sold out the 400-seat Strand Theater. Next, it was on to North Carolina. Andy and Kris share the task of traveling all over the country to attend these grassroots premier screenings. This film is a must-see for Lyme patients and practitioners alike.

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