- Lyme disease can affect any number of organ systems and is increasingly prevalent across the U.S.
- Chronic Lyme disease may be misdiagnosed as many other conditions.
- Lyme disease specialists and their patients are at odds with health authorities, who resist the idea that the disease even exists.
Andy Abrahms Wilson’s documentary Under Our Skin tells the often hidden story of Lyme disease, an infectious disorder caused by the bite of an infected deer tick, a tiny parasite not much bigger than a pencil point. Wreaking havoc across the country, the disease was originally called “Mrs. Murray’s Disease” after the mother in Lyme, Connecticut, who noticed that many people, including children, in her neighborhood were affected by a mysterious illness characterized by a rash followed pretty quickly by symptoms of arthritis and other inflammatory conditions.
It was not until the early 1980s that medical entomologist Willy Burgdorfer, PhD, who had been studying Rocky Mountain Spotted Fever (another tick-borne disease) recognized the deer tick connection. Dr. Burgdorfer, who conducted research at Rocky Mountain Laboratory (RML) in Hamilton, MT, identified and named the responsible bacterium, the Borrelia burgdorferi.
Because of its spiral shape, this spirochete can dig into virtually any tissue, and may show up in any of a number of organ systems, where it is commonly misdiagnosed as a “laundry list” of other conditions including multiple sclerosis (MS), Amyotrophic lateral sclerosis (ALS), chronic fatigue syndrome, rheumatoid arthritis, lupus, Parkinson’s disease, Crohn’s disease and, most commonly, psychiatric disorders.
And this is about as much as the medical community, as a whole, agrees upon.
Disagreement Among Health Care Professionals
Beginning in 1981, a sharp divide developed between mainstream doctors and researchers who see Lyme as a disease that is “hard to get and easy to treat” and the handful of dedicated doctors and frustrated patients who see the disease as a much more significant threat.
Conventional medicine holds that Lyme disease is easy to diagnosis and treat: If you live in or visit an area known to harbor the Lyme-carrying deer tick, and you are bitten by one and develop the telltale “bulls-eye” rash, you will be treated with a comparatively aggressive course of antibiotic therapy, maybe for 21 days, and you will be cured. If you don’t see the rash but suspect that you have been exposed or infected, you can be tested. If you test positive for the disease, you will be treated in the same way. If the test is negative, you do not have Lyme.
Top mainstream naysayer Gary Wormser, MD of New York Medical College calls chronic Lyme the “disease du jour,” and insists there is no evidence that it even exists. Other researchers and doctors, including Lyme disease specialist Alan MacDonald, MD of the University of New Haven disagree wholeheartedly, arguing that not only does the Lyme test accurately reflect infection in only about half of cases, but for many patients, the disease does not respond so easily to short-term antibiotic treatment but becomes chronic, often spiraling into a degenerative condition that can cause patients increasingly severe, potentially life-long dysfunction and may lead to death.
Lyme Disease Patient Experiences
All too typical are the stories of patients who were long misdiagnosed, spending many thousands of dollars and years of suffering and frustration trying to find a doctor who would listen to them and take their concerns and symptoms seriously. A number of Lyme disease patients and their doctors are featured in the documentary Under Our Skin, with interviews focusing in on several people whose experiences characterize the difficulties faced by those with the chronic form of Lyme’s.
Jordon Fisher Smith was a forest ranger for 21 years and presented with all the classic signs and symptoms of Lyme’s, even identifying and bringing in the infecting tick. However, it still took him five doctors and years of fighting profound fatigue, loss of cognitive function and suicidal depression before he found appropriate treatment.
Mandy fought crippling pain and seizures for 14 years, but was told time after time that it was all in her head. One doctor told her, “you’re an attractive girl and you obviously don’t feel you are getting enough attention.”
Dana managed to hide her persistent and intense pain by burying herself in her demanding job as an event planner for a major music group on tour. She eventually collapsed and have to face the damage she was doing to herself when her job let up.
Elise, a pregnant mother of one whose own Lyme disease seemed to be in remission, miscarried repeatedly. At least once, her miscarriage was confirmed to be the result of in utero Lyme disease. Able at last to bring a second pregnancy to term, her baby boy was diagnosed with congenital Lyme’s and Elise lives in constant fear for his health and continued well-being.
Why Such Heated Debate?
These and many other cases of Lyme disease point to a serious and under-recognized epidemic in this country. Why would medical authorities continue to be so adamant that chronic and late-stage Lyme disease does not exist, to the point of prosecuting physicians who disagree or who use unapproved methods to treat patients with Lyme?
Science writer and senior producer of Under Our Skin Kris Newby points to a “perfect storm of events”. First, in 1980, the U.S. approved a ruling to allow for patenting and profiting from the discovery of live pathogens. As a result, scientists working for government and the pharmaceutical companies or conducting research at universities stopped sharing their research in order to protect future profits.
The Lyme pathogen was discovered in 1981. Around the same time, the country saw the rise of managed care. The Centers for Disease Control (CDC) and the National Institutes of Health (NIH), along with hospitals and academic institutions, began to partner with the pharmaceutical industry. The focus of the health care industry switched from patient care to profit making.
In 2006, the Lyme disease victim community fighting for appropriate recognition and treatment of chronic Lyme’s disease faced a dramatic setback when the Infectious Disease Society of America (IDSA) came out with a devastating set of Clinical Practice Guidelines for diagnosis and treatment of Lyme’s. Under the chairmanship of Dr. Wormser, the report was hurried into print and categorically upheld “mainstream” views on the disease.
Raising some concerns, more than half of the 400 plus anchoring Lyme disease research evidence reviewed in the report were written either by an IDSA-appointed panelist or by someone in one of its laboratories. “It’s not like they looked at the entire body of research,” says Newby. One former panelist adds that they were never given the opportunity to discuss chronic or late-stage Lyme because of the tremendous pressure on them to sign off on the report as it was presented to them.
The documentary Under Our Skin closes on a couple of high notes: The IDSA ultimately agreed to reexamine their Lyme disease guidelines and Dr. MacDonald announced his discovery of a self-protective “biofilm” that allows the Lyme pathogen to resist standard therapy, opening the door for more effective treatments. The film was an academy award finalist and has received numerous other honors.
Note: The trailer for Under Our Skin can be viewed on Youtube at Under Our Skin—Extended Trailer. The website for this 2008 documentary film, produced by Open Sky Pictures, is at www.underourskin.com.