Last Thursday my family went to the Seattle screening of the Lyme documentary "Under Our Skin" at the Harvard exit Landmark Theatre. We arrived early to help Emma set up a table of informative pamphlets. Emma is the prime mover behind the event, having contracted Lyme in her urban Seattle garden.
It's very hard to explain my feelings as the lobby became crowded. It hit me square in the gut to realize there were nearly two hundred local Lyme patients in the room. Knowing that each one represented ten more, it was chilling to think of nearly two thousand people possibly affected by this disease in the Puget Sound area, so many unaware.
Accompanying patients were family, caregivers, advocates, doctors, U.W. medical students and reps. from the offices of both Adam Smith and Larry Seaquist. There was both joy and sorrow in the company...but also strength of purpose. We had been waiting for over three years to be able to watch this movie and the night was here.
Memories of the ten years of struggle for my daughter interplayed with the patients' stories in the movie so she and I held hands to help us through. We both wept during the scene where a young girl who had been confined to a wheelchair (after being a ballerina) got out of the chair to walk to her doctor for the first time, after being treated correctly. My daughter's doctors reached over to touch her, remembering the day in their office that she first rose from her wheelchair.
Under Our Skin wasn't just emotional stories of different people's struggle for answers. I really appreciated how it dove into the Lyme Wars and let doctors from each side speak. It was extremely interesting to see how none on the panel of fourteen (they insist there is no such thing as chronic Lyme) who made the Lyme Guidelines for North America...I repeat...none are untainted. It was a lesson in medicine as business and money made atop the graves of Lyme patients. This panel of fourteen now has to do a review of their guidelines as part of a plea-bargain agreement with the Connecticut State Attorney General's Office, to avoid a criminal investigation. Let me show you how the panel breaks down:
Six out of the fourteen, or their universities, hold patents associated with Lyme disease or its co-infections. That's right, patents on diseases. This is where medicine took a really wrong turn, back in the '80's.
Four of the fourteen have received funding from Lyme test-kit manufacturers. Testing is woefully inadequate.
Four of the fourteen have been paid by insurance companies to write Lyme guidelines or serve as consultants in legal cases.
Nine of the fourteen, or their universities, have received money from the manufacturers of Lyme vaccines. Not much is said about one vaccine that actually gave study participants Lyme disease.
We have the DVD now and plan on as many local showings as we can manage. Larry Seaquist and I had a brief brainstorming session and plan more. I don't care if I have to bang on every door in every neighbourhood and say, "Put on the popcorn, we're going to watch a movie!" Stay tuned folks...we're on a mission here to stop the fastest growing vector-borne disease in the world today. It's about education. First-Stage Lyme is an easy fix...Third-Stage (chronic) Lyme is a Hell you don't want to get to...but we must get through.
My family has been in a foxhole, fighting, for ten years. This movie is our charge...as my daughter says, "For all those who come after."