Lyme: it’s not in your head
I am an 18-year sufferer of Lyme disease, whose life was saved by treatment by International Lyme and Associated Diseases Society doctors, after Infectious Diseases Society of America guidelines refused me treatment.
I was ignored by doctors, mostly in Maine, for 15 years until I was lucky enough to meet the late Bill Chinnock (one of the founding members of the E Street Band), who suffered Lyme disease. I don’t have a right to talk about his private battle, but he was one of many of the very ill or formerly ill who helped me get help. After 15 years of misdiagnosis, inappropriate drugging, ridicule, and very literally being laughed out of the office of an infectious disease specialist at Central Maine Medical Center right after telling her I was unable to feel much on my left side, I am thoroughly angry at the smugness of the medical community and IDSA. They would, apparently, rather allow people to suffer from this underfunded, understudied epidemic rather than risk censure by the American Medical Association.
I had had a negative Lyme test result, because after six months of having the disease, the body stops producing all five antibodies crucial to a positive result. Therefore, I was told, “Stop thinking about the Lyme! Go home and relax!”
Constance Dickey, mentioned in your article, was one of the informed ill people who helped me get help. She and the other informed ill were my only links to hope in this horrible nightmare. There is nothing on Earth, save losing a child, perhaps, like your family doctor saying, “There is nothing I can do; you need to see a psychiatrist for your anxiety,” when you’re having seizure-like episodes, excruciating angina, migraines, tremors, and horrible pain 24 hours a day. After my experience, I am a proponent of clinical diagnosis of Lyme. The common test is worthless to the late-stage patient, and is currently used to call them psychosomatically ill. Susan Collins and many other senators are behind Lyme bills to help fund the search for a better test.
Jennie Martin
Gray
Too serious to ignore
Thank you for writing the article in the Portland Phoenix about Lyme disease (see “Once Bitten,” by Deirdre Fulton, September 19).
My teenage daughter lost three years to Lyme, saw Dr. Jones in New Haven, got better. The antibiotics made her well, not sicker, but it took several years of treatment, including six months of IV Rocephin.
The biggest issue, other than the insidious nature of the disease itself, is the medical profession as a whole. Medical professionals have failed too many people in their treatment of Lyme disease, which is too widespread in Maine to allow this failure to continue indefinitely.
Anne McMahon
Sebago
See the film again
The overflow crowd, standing room only, at SPACE Gallery for Thursday night’s showing of Under Our Skin was testament to the hunger for information regarding Lyme disease on the part of the general public (see “Once Bitten,” by Deirdre Fulton, September 19). The film made clear two important points: first, that a disease so often mistakenly diagnosed because of the varied and wide ranging symptoms exhibited by sufferers, cannot be pigeonholed by medical “guidelines,” and second, that the perverse prosecution of committed physicians will only harm research and limit treatment options.
There is no “complete story arc” to the film because no one story included can resonate with a majority of Lyme sufferers. The kaleidoscope of symptoms and treatments shown make it clear that we are still early in the battle to understand this public health epidemic.
Hazel Raby and Michael Alderson are to be commended for sponsoring the Portland showing of Under Our Skin. For those turned away, and for those in the Midcoast, there is another chance coming up to view this important documentary: it is scheduled to be shown as part of the Camden International Film Festival at the Strand Theater in Rockland on Saturday, September 27, at 6:30 pm. If you are fortunate enough to not be grappling with Lyme now, this film could ground you with information you or a loved one could need in the near future.
Barbara O’Brien
Newfield
