Shining a spotlight on Lyme disease
Patients share stories in film
Duxbury resident Brad Besse contracted Lyme disease more than a year ago, but the six doctors he saw when he began complaining of problems with digestion, dizziness, and hearing and memory loss failed to diagnose the infection. They tested him for Lyme disease — and numerous other conditions — and told them that tests showed he was not sick.
“It’s pretty scary to be sick for six months and have everyone tell you it’s all in your head,’’ Besse said last week.
Besse eventually found what he calls a “Lyme-literate’’ practitioner who gave him a better test for the presence of the disease-causing bacteria, got a positive result, and began treating him for the illness. He now says he’s “95 percent’’ cured.
To prevent others from going through what he did — and help those who may already be suffering from the disease’s many undiagnosed cases — Besse arranged for the full-length, 2009 Oscar-nominated documentary film “Under Our Skin’’ to be shown free next week in his town’s Performing Arts Center auditorium, followed by a question-and-answer session with specialists.
Directed by Andy Abrahams Wilson, “Under Our Skin’’ tells the story of what the film’s producers describe as “one of the most serious and controversial epidemics of our time.’’ Like medical researchers and others who challenge the mainstream view of Lyme disease’s diagnosis and treatment, Wilson said in his director’s statement for the film, “each year thousands go undiagnosed or misdiagnosed, often told that their symptoms are all in their head.’’
His film follows the story of patients whose cases went undiagnosed, often with a debilitating impact on their health and their lives, and blames their plight on the willingness of the medical establishment, including test manufacturers and insurance companies, to put profits over patients.
According to Turn the Corner, a nonprofit Lyme disease support organization, the disease is caused by a bacterial spirochete transmitted by ticks — commonly called deer ticks, though they are also hosted by rodents. It is hard to diagnose since its symptoms are similar to those of other disorders. The disease’s only distinctive outward sign, the “bull’s-eye’’ rash, is absent in almost half of infections, so people relying on finding that rash may not know they have the infection.
While the disease can be relatively easy to treat with antibiotics when diagnosed in its early stages, it is much harder to treat when the symptoms get worse.
Besse said his case fit the pattern of those depicted in the film. In February of last year, Besse, who works for a biomedical company, became ill with something that presented like stomach flu and was followed by dizziness. He saw his primary doctor, a gastrointestinal specialist, an ENT, and eventually a neurologist, but his problems with his ears, memory, and vision kept getting worse.
“They said nothing is wrong with you, you must be stressed out,’’ Besse said. The ostensible cause of stress was his wife’s pregnancy, but he was sure that ailments serious enough to make him consider stopping work were not the product of stress.
When a holistic practitioner was recommended to him, “I went to her grasping at straws,’’ he said. She suspected Lyme disease and had an advanced test performed by a laboratory in California.
According to the International Lyme and Associated Diseases Society, a diagnostic evaluation test “should be performed by a laboratory that reads and reports all of the bands related’’ to the Lyme bacteria. But most laboratories use federally approved kits and are restricted by the kits’ manufacturers from reporting all bands, the society’s experts say. The result is many false-negative results.
The reason most doctors are operating under inadequate guidelines for diagnosing Lyme disease, according to “Under Your Skin,’’ is that medical companies are making money out of the current tests and insurance companies don’t want to pay for new tests or for treatment of more patients.
(The Centers for Disease Control and the Food and Drug Administration, however, urge caution in the use of Lyme disease tests whose accuracy and clinical usefulness have not been adequately established. Patients are encouraged to ask their physicians whether their testing was performed using validated methods and whether results were interpreted using appropriate guidelines.)
Two Lyme-literate doctors and two other experts will answer questions after the film’s screening in Duxbury.
Besse said Lyme disease sufferers are frequently misdiagnosed with other diseases such as fibromyalgia, chronic fatigue, multiple sclerosis, ALS, Parkinson’s, and even autism (in children).
“I’ve gotten kind of passionate about this,’’ Besse said. “I know there are people in this area who have got this disease and don’t know about it.’’
Robert Knox can be reached at firstname.lastname@example.org.