Reporter's Notebook: The dark side of Lyme disease detection (Sept. 26, 2008)
As I sat in Space Gallery on Congress Street in Portland Sept. 18 watching faces flash on the screen, listening to their testimonies, I started to cry.
I was at a screening of “Under Our Skin,” a recent documentary on the rising epidemic of Lyme disease that took Andy Abrahams Wilson hundreds of thousands of tape hours and two years to film. While I did not know what to expect of the film, it stirred more emotions in me than I could handle at one time.
The way Wilson wove stories of Lyme disease patients and doctors’ perspectives, as well as the facts of the disease, I experienced sadness for those suffering, anger toward the democracy of the health care system, sympathy for the patients and even fear for those whose health was not improving.
First uncovered in the late 1970s, incidences of Lyme disease have doubled since 1991, reaching 20,000 reported cases according to the Center for Disease Control (growing four times as quickly as the spread of AIDS). However, according to the film, the Center for Disease Control has admitted it is likely there are at least 180,000 more cases that go unknown or undiagnosed.
The reason for undiagnosed Lyme disease going is because of heightened controversy over the protocol for diagnosis and treatment. The Lyme titer and Western blot used in lab tests are not completely reliable, only diagnosing a positive test 60 percent of the time, according to the documentary. So even if you see and remove the tick that bites, then develop the “bulls-eye” rash that is a common indicator, your lab test may still be negative, and studies have shown it is possible Lyme disease can be transmitted through birth and even sexually (the Lyme bacteria is a close cousin to syphilis).
If that weren’t disconcerting enough, once diagnosed, the Infectious Disease Society of America has recommended a two to four week antibiotic treatment to “cure” the disease, and doctors who are going against this recommendation by treating patients with long-term antibiotics are being called on the table for malpractice.
One of the subjects in the documentary had become so sick, she could not control her own muscles, having spasms or becoming completely stiff. She finally sought out a doctor who would provide her with intensive therapy, and the documentary follows her from snowballing into illness then through three years of antibiotic therapy, showing a drastic improvement in her health. Her doctor on the other hand, was brought in front of the medical board, had his license pulled and was forced to close his practice while facing a lawsuit from an insurance company for $100 million.
The documentary showed multiple Lyme disease patients improving their health through similar antibiotic therapy, so why should these doctors be losing their licenses to help them? It is not the patients reporting the doctors, but the insurance companies who do not want to pay the hefty medical bills for the extensive treatments.
Nine of the 12 Infectious Disease Society of America members on the panel for developing the standards for treating Lyme disease had conflicting interests with other organizations, such as insurance companies. The standards are now under review, requiring an entirely new panel and at least one medical official to notarize the protocol.
In a time when mothers are sending a message in a bottle to government officials about the chemical BPA in the plastic of baby bottles, to residents banning together forming water extraction ordinances to prohibit large companies from exploiting water resources, people across America are suffering from Lyme disease and doctors are telling them it is all in their head or there is no protocol for treatment.
“Under Our Skin” has partnered with Turn the Corner Foundation to raise awareness about Lyme disease, support innovative treatments, raise funds and support research, and I have only touched a small corner of the information offered. For more information on their work, visit www.underourskin.com or www.turnthecorner.org.
—Emma Bouthillette
Greetings!
Thanks for a wonderful review of Under Our Skin, the documentary on the issues and controversy of diagnosing and treating Lyme disease. It is a huge epidemic, and it effects everyone in Maine---if not directly, it does through disbilities of patients. We have children in special education classes and adults who are unable to work or be productive citizens.
Thank you.
Happy Dickey RN
MaineLymeDisease Support Groups
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Thank you so much Emma, from one Maine girl, one of thousands of people across the country who is suffering with Chronic Lyme! The movie Under your Skin made me so sad...and it made me angry--guess I ran the whole gamut of emotions! I had wondered how it would affect a non-Lyme person.
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I am so proud of you
love daddoo
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Thank you for your wonderful review. My once healthy husband has spent three years now in the nightmare of Lyme disease. The disease itself is a horror but what makes it even worse is the absolute ignorance and reluctance of doctors to give proper treatment. Everyone is just one bite away from suffering the same fate.
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This disease has destroyed my life- went undignosed for 15 years, and have to travel 700 miles 1 way for proper treatment while all the local doctors and hospitals still insist I do not have lyme disease- I fought hard for years and proved them all wrong. We have no experts in new england- one llmd who simply is not treating the disease and telling his patients lyme is not a progressive disease. Please, to anyone suffering, get to one of the 6 experts in this field if you ever plan to make a dent in treatment. Late/Mis-dignosed lyme cannot be cured with a bottle or 2 of tetracycline- you will waste your prescious time as the disease does progress. Dr. Jemsek is open in SC - Jemsek Speciality Clinic- thank god he cares so much- he truley does.
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We saw "Under Our Skin" last night. Why, why, why? So many of us have suffered (16+ yrs undiagnosed myself) and now I find out all this--THANK YOU for your article. Very well said!
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The emotion expressed in your review I have felt continually for my mother, whose Lyme went undiagnosed by a stream of doctors for over 20 years. By self-treating symptoms with every natural cure and herbal book she could find, she has staved off death, but to say she has suffered physcial and mental anguish at the hands of the medical community is to say the ocean is a bit wet. Our family has felt despair, hopelessness, frustration, resentment and tremendous empathy for my mother as she was told it was in her mind, "nerves", epilepsy, fibromyalgia, and any other disease you can think of that matches the host of symptoms. She was prescribed various harmful drugs such as Dilantin, Tegretol, and anti-spasmodics which in my view had her on the decline. She exhibited better progress when self-treating the symptoms with natural remedies. Emotion is critical to the cause. It must be talked about, relayed, and imprinted on those in government so that rather than government-funded bailouts of fraudulent mortgage practice gone to 30 and 40 million rewards to executives, more than the paltry 20 million for research Congress is entertaining can be diverted to the sleeping monster that Lyme will one day reveal. Thank you for your sensitivity and action.
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Great article!!! Thank you.
I am another one of those that 'slipped through' undiagnosed for many years. After 10 months of strong antibiotic treatment, I finally tested positive for Lyme. It is being assumed that I also have the co-infections & STARI.
I really can't remember a time in my life when I was completely well, as I grew up playing (& working for awhile) in the woods. My husband & children have never known me as a healthy individual.
I now must carry a prescription to be filled any time I have a tick attach - not a happy thought, if you know what I mean.
I do consider myself one of the lucky ones - I didn't have to have intervienious antibiotics & I was bed ridden only a short time.
There is such a lack of information & communication coming from the Doctors, & NIH, among others, that each individual has to be their own "Sherlock Holmes" & hunt through massive amounts of information, trying to decide what's true, what's false & what to stay away from as it would actually cause damage, if not cost you your life!
We need better education, medications & most of all - better understanding & compassion. I honestly can't count how many times I have heard from Doctors, Medical staff & of course, acquaintances tell me how good I look & how can I feel so ill all of the time.
Once again, thank you for the time you put into this article. We need a lot more people to get the word out.
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