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Tuesday, July 29, 2008

Under Our Skin

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 my daughter says, "For all those who come after."


Kim Thompson said...

Lorraine, your post is informative, relevant, and meaningful. Talk about being REAL, as our friend Joseph puts it.

This is by and far a health crisis, in our backyard and well beyond.

I praise the local Lyme community for making this event happen, I praise the bravery of the few doctors, I praise the filmakers, and I praise the political representatives that turned out.

I pledge my support Lorraine to you and your team in this project. You know what might be helpful is a brief note on helpful websites, books, and other media bits for the 'hood and its readers to explore further.

Does the movie allude and cover international issues with Lyme? In that, how is Europe handling this? Canada? Asia? Etc.?

You know, I have a rather dumb question; given the backgrounds and agenda of this U.S. Lyme "panel," why are they still around making decisions? Why can't they be gotten rid of?

I know I've probably opened a kettle of stinky fish here.

Stephanie Frieze said...

You can count on me, too, Lorraine. How do we get an Oprah interested? Someone who is respected and has clout.

Shame on the local media for not being a bigger part of this even!

Thanks for the post. I know how emotional the disease and movie are for you.

Lorraine Hart said...

Thank you so much for your support, my friends, it means a lot to us.

Thought we'd supply some basic links for information:


General Info: International Lyme and Associated Diseases Society (first timers, look to the left menu bar for "Basic Information"), and

More in depth info: (Virginia Sherr's website, member of ILADS)

Lorraine Hart said...

Kim, to answer your question about the international attitude, as difficult as it is in the States to get proper's even worse in Canada and Europe. Canada ONLY relies on the Elisa test, which is the most unreliable Lyme test going. Their leading Lyme specialist (who saved my daughter's life in 2001) was forced into early retirement...but he is not silent. Google Dr. Ernie Murakami.

We've been told that doctors in England are afraid their licenses will be pulled just for ordering a Lyme test for their patient.

The cutting-edge science is right here in this country.

As to your other question about the panel of fourteen...well, they have weighty institutions behind them, like Harvard, Yale, medical manufacturers and insurance companies. The movie will explain better than I could.

Stephanie, thank you for speaking up about the lack of media coverage for this event, even though we reached out to all.

I will gladly bring the movie to a screening at the TNT. The mountain is very willing to come to Mohammed.

Lorraine Hart said...

PS Stephanie...the Lyme community has tried to reach Oprah for years now...and we get the same standard rejection.

The Today Show did a good piece last month, though mostly on early Lyme. Turns out Dr. Nancy Snyderman's husband has Lyme. Most people become involved when the disease affects them or a loved one...this is how many Lyme-literate docs got started.

Stephanie Frieze said...

Could you get the use of the meeting room at the GH library to show it? We could make some posters and try to get the TNT and the Gateway to put a notice in their papers.