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 LongLife 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. If you are interested in hosting a screening
for your community, visit the screenings section of the Under Our Skin website to
find out more information.
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