Moose Lake Star Gazette - Serving Carlton and Pine Counties Since 1895

By C.M. Swanson
Moose Lake Star Gazette 

Film unveils politics behind Lyme disease

 


Editor's note: The following is a review of the documentary titled "Under Our Skin."

May is Lyme Awareness Month. A powerful resource for awareness of Lyme disease history and controversy over its treatment is the film "Under Our Skin," produced by Open Eye Pictures, a public, non-profit organization based in Sausalito, California.

Premiering in 2009, "Under Our Skin" was an Academy Award semifinalist for best documentary feature. Since its distribution, "Under Our Skin" has won numerous international awards. The 104-minute documentary is now available for viewing via Internet http://www.hulu.com/watch/268761/under-our-skin. It also has a Facebook page.

While the individual stories of people who contracted Lyme disease are compelling, they are fraught with pain and suffering. A viewer could easily be moved to the point of not wanting to relate.

However, two aspects of the documentary draw the viewer onward. First, Lyme disease has now reached epidemic status. You either have, or you know someone who has Lyme.

Second, the politics behind the treatment of Lyme revealed in the film stun the viewer into rapt attention.

Foundational history

Though Lyme disease began to surface in the 1960s, it wasn’t until 1975 that a mother in Lyme, Connecticut, drew attention to the unusual number of children in her neighborhood who had an arthritis-like illness, that medical research turned its attention to the illness, which was subsequently named Lyme disease.

In 1981, Dr. Willy Burgdorfer discovered the bacterial pathogen that caused the disease. It was a spirochete (spiral bacterium), subsequently named Borrelia burgdorferi.

Politics and timing

The set up for controversy with Lyme disease and its treatment began with a number of events. In the film "Science Writer," Kris Newby states that in 1980, the United States allowed government institutions and universities to patent and profit from live organisms.

“So the Lyme disease organism was discovered in 1981 and all of a sudden there was the equivalent of an Oklahoma land grab,” said Newby, “people looking under their microscopes, patenting pieces of the organism.

“The people that are credited for being Lyme disease experts no longer share the information about a new, really dangerous pathogen. They horded the information because they wanted to protect future profits.”

Director of the Center for Science in the Public Interest Merrill Goozner, also an interviewee in the film, stated, “You have professors, especially in the bio sciences, trying to take their discoveries, often made on the federal nickel, and take them private. They patent them. They start firms.”

Goozner went on to say that commercialization ended up driving the research agenda rather than offering what was medically useful.

IDSA puts in more than

their two cents worth

Another building block for controversy came with input from the Infectious Diseases Society of America (IDSA), a committee formed to write the medical guidelines for the definition of Lyme disease and to set the standard for treatment.

“Ideally, authors of medical guidelines should have no financial conflicts when they make their recommendations, “ explains Newby in the film, “but if you look at the current IDSA authors, six of the 14, or their universities, hold patents associated with Lyme disease or its co-infections; four of the 14 have received funding from Lyme or co-infections test kit manufactures; four have been paid by insurance companies to write Lyme policy guidelines or serve as consultants in legal cases; nine of the 14 authors, or their universities, have received money from Lyme disease vaccine manufacturers.”

The controversy grows

IDSA guidelines are published stating that Lyme is an acute disease, not a chronic disease; that Lyme can be diagnosed and treated effectively within two weeks.

The controversy is fueled when doctors find that, while the acute category is accurate in some cases, other patients developed a chronic illness that required longer, more intense treatment.

The argument becomes, is Lyme disease only acute or can it develop into a chronic status? It is a controversy that continues to this day.

Chronic category

status attained

The challenge to attain chronic status for Lyme disease was met by Dr. Alan B. MacDonald, who, after years of research, discovered that Lyme spirochetes have the capability of developing bio-film, a protective coating, making it resistant to antibiotics.

The IDSA denied the discovery.

To complicate matters, MacDonald developed Alzheimer’s and was unable to continue his research. However, Dr. Eva Sapi of the University of New Haven currently carries on his research.

Making it real for the viewer

The documentary then spells out how insurance companies use guidelines set by the IDSA (which they influence).

The film states some insurance companies registered complaints with the medical board of review, alleging that a number of doctors did not follow guidelines set by the IDSA for diagnosing and treating Lyme. The end result was having the doctors’ license suspended.

This is the "What if?" moment for the viewer. What would happen if I developed chronic Lyme disease and couldn’t be effectively treated?

There is hope

Near the end of the film, it is noted, though the controversy over diagnosis and treatment of Lyme disease continues, there is hope for the future.

“... I think the truth will eventually come out,” states Newby, “but how many more people are going to suffer before the truth comes out?”

Sequel

"Emergence," a sequel to "Under Our Skin," is due out this summer. Quoting from the website UnderOurSkin.com regarding "Emergence," “We watch as the truth emerges about the disease’s persistence and reach, about promising new research, and about medical collusion and conflicts of interest that continue to impede progress.”

BLACKLEGGED TICK

Ixodes scapularis

Where found: Widely distributed in the northeastern and upper midwestern United States.

Transmits:Lyme disease, anaplasmosis, babesiosis, and Powassan disease.

Comments: The greatest risk of being bitten exists in the spring, summer and fall. However, adults may be out searching for a host any time winter temperatures are above freezing. Stages most likely to bite humans are nymphs and adult females.

Resource: http://www.cdc.gov/lyme/resources/TickborneDiseases.pdf

 

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