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."
Our regulars
Stephanie Frieze…has always liked to write. Her experience includes three years at the University Washington School of Communications studying journalism. She had a stint at the Chinook Observer in Long Beach. Raised in Bellevue, she’s lived in Gig Harbor for nearly 18 years. She and her husband have a home in Ilwaco, where they spend as much time as possible. This mother of four loves books, spending time with family and the color purple. Contact her at dbandstefery@comcast.net.
Lorraine Hart…was born a nomadic mutt. She spent her life observing, writing and making music. She’s an unabashed carrier of the titles “hippie,” “feminist” and “liberal.” She’s resided in the South Sound since 1996 and is currently living above Joe’s Bay in Home. She juggles her time between being a caregiver, a writer, an artist, a musician, a minister, a wife, a mother, an advocate, a friend and a pilgrim – not necessarily in that order. Contact her at matlox@cablespeed.com.
Jaynie Jones…is a Tacoma resident with diverse career tracks in broadcasting, journalism, teaching, health care, desktop publishing, floral design, special event planning and photography. She’s best known as long-time KOMO radio personality Jaynie Dillon and was once a familiar voice on Tacoma stations KTAC, KBRD-FM, KTNT and KNBQ-FM. Formerly a resident of Tacoma’s East Side, she’s volunteered in the Eastside Substation and with Safe Streets. Contact her at jaynie.jones@gmail.com .
Tracy Lebenzon...is a blog contributor from Greenwater. Greenwater is the last stop before Crystal Mountain, Mount Rainier and the surrounding wilderness areas. When not exploring the next mountain peak or forest trail, Tracy also contributes to the Greenwater Community Council and the Explore-Greenwater.com web site. He writes about topics ranging from favorite foot, bike, and snow trails to community events, local merchants and politics. Contact him at dmountains@explore-greenwater.com.
Joseph McGowan…is a chaplain who supports patients, families, friends, nurses and doctors at St. Joseph’s Hospital. Being 67, he’s learned this about living: Meet people on their own ground and you will discover that this Earth is our special place to meet and support each other. His motto: Live now. Share yourself now. Every living thing you experience is a pure gift. Love all life unconditionally. Contact him at mcg9940@yahoo.com.
Mizu Sugimura…is a third-generation Japanese American living in Federal Way. She’s married and a parent of one adult child. A lifelong resident of the Puget Sound area, she graduated with a degree in journalism from the University of Washington School of Communications. and served on Federal Way’s Diversity and Art Commissions. Her interests are politics, art, the history of minorities in Washington and family history. She’s written a self-published family history about her paternal grandfather. Contact her at mizusugi@yahoo.com.
Kim Thompson…is a Grit City native who was born and raised in Tacoma’s Old Town neighborhood by the gulch. She boasts that she’s a former Lowell Leopard, Mason Mustang and Wilson Ram, a short-time PLU Lute and a longtime UW Husky. This former corporate businesswoman is a wife, a mom, a school volunteer, a substitute teaching assistant, a writer and a born-again distance runner. She has convinced friends from Bellevue that Tacoma is worth the drive. Contact her at kimricksy@comcast.net. ugi@yahoo.com.
6 comments:
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.
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.
Thank you so much for your support, my friends, it means a lot to us.
Thought we'd supply some basic links for information:
Symptoms: http://www.geocities.com/ladyjewel218/Symptoms.html
General Info: http://www.ilads.org/ International Lyme and Associated Diseases Society (first timers, look to the left menu bar for "Basic Information"), http://lymenet.org/ and http://lyme.org/
More in depth info: http://www.thehumansideoflyme.net/ (Virginia Sherr's website, member of ILADS)
Kim, to answer your question about the international attitude, as difficult as it is in the States to get proper treatment...it'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.
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.
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.
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