Enjoying the milder days...but, remember....

Pssst, come over my friend,
take a word to the wise,
here in Washington's cool, wet clime
the dangerous tick never dies.

Put your pants in your socks
when you walk the trail,
play in yards, climb mountains,
or dance in green dale!

Wear lighter clothing
so you can see
if one little tick
took a ride on thee.

Check one another
when you come home at night.
Look in folds, behind ears...
in your hair? Yes they might!

Maybe you've heard of
a disease called Lyme,
and other infections that,
left for a time,
can cripple your body
and cripple your mind.

It rips apart families
and drains our government dime.

My friend, the little tick causes Lyme.

Educate yourself and
KEEP WASHINGTON FINE!

A Thank You...A Request.

My daughter, Anna Willo, at age 2. She's now nearly 28 and a ten-year veteran of Lyme disease. For every painful experience she has gone through, she says, "I do this for the next person coming."

You can't imagine the gratitude I feel this morning. There on page A5 of our Tacoma News Tribune was the headline, "Lyme disease mystery might have been solved," by Delthia Ricks of New York's Newsday. I know you can relate to the feeling of this being our newspaper and a major connection to our family's story. We already knew about the breakthrough (new research findings are shared quickly in the Lyme community, worldwide) and know that this is only one clue in a complex mystery of vector-borne diseases. That having been said, the research field getting pried open and public focus given to this very real and present plague is manna to us...and the thousands of other families fighting for recognition and relief.

Today my hat's off to you, Tacoma News Tribune, and I thank you from the bottom of a mother's heart.

Now...
I'd like to ask, here in front of my neighbours and on my knees (scenery-chewing, I know...but a spotlight's a spotlight!) for you to send a reporter to the private screening of "Under Our Skin" at the Harvard exit Landmark Theatre (tickets available at the theatre) on Thursday, July 24th. at 7p.m. Meet with some of the members of our Washington chronic Lyme community...the community that is invisible to the Infectious Disease Society of America.

If you don't think this is political, let me share something with you. A few weeks ago, my daughter showed me the Wickipedia (yeah, the People's Encyclopedia) page on Lyme and we were both really impressed with the work that had been done to give real information to those bitten and searching for help. There was balanced information between First Stage Lyme (an easier fix) and Tertiary or Third-Stage (chronic) Lyme.* Two days ago we went there again. Now it has been completely edited to the IDSA misinformation.

* (My daughter belongs in this latter, chronic group, which the IDSA declares doesn't exist.)

One example:
IDSA says the bullseye rash appears at least 80% of the time...and gives a narrow definition of the rash.
Truth is at least half of those bitten never saw a tick or a rash. Rashes can be non-existent, hidden (like on the scalp) or appear as bruises in those of darker skin tones.

Any real information begins to get lost now in technical language that would stop a healthy brain, let alone a brain with a bacterial inhabitant. A freeze has been put on editing and contributers to the page have been banned from Wickipedia.

The IDSA fails to mention, in its announcement of a new upcoming public review of their Lyme Guidelines, that this was an agreement to forestall a criminal investigation into financial misdeeds, arranged in a plea-bargain agreement with the Connecticut State Attorney General's Office.

Investigative reporters, I don't want you to believe me. I'm just a regular mum, in a foxhole with my daughter. There is a Pulitzer Prize-winning story wrapped-up in the "Lyme Wars" waiting for the reporter who goes beyond the sticky-tape of the IDSA's self-awarded seal of authority. The International Lyme and Associated Diseases Society's (ILADS) experts are also represented in this film, "Under Our Skin." Families who suffer have waited desperately for this movie to come out, to speak for them in a public arena. Some have died while waiting for you.

I dedicate this post to Rose, who died from chronic Lyme, April 18th., 2007.

Rest in peace Rose, the movie's out.

"Under Our Skin" Private Screening, July 24th.

When was the last time you watched a movie that could save your life, or the life of someone you love?

I know it’s not May…and I try not to be a one-note neighbour…but this is important. Thursday, July 24th, at 7pm there is to be a private screening of “Under Our Skin,” a documentary on Lyme (both medical and political) at the Harvard exit Landmark Theatre, 807 E. Roy St., Seattle. This is a one-time only event, with an hour-long Q&A with Dr. Marra M.S. N.D. before the movie’s start. The tickets are $10 and can be purchased at the theatre.

From the press release:
Synopsis:
A dramatic tale of microbes, medicine and money, this eye-opening film investigates the untold story of Lyme disease, an emerging epidemic larger than AIDS. Each year thousands go undiagnosed or misdiagnosed, told that their symptoms are “all in their heads.” Following the stories of patients and physicians as they battle for their lives and livelihoods, the film brings into focus a haunting picture of our health care system and its ability to cope with a silent terror under our skin.

From the Director’s Statement: Andy Abrahams Wilson
Perhaps this film project, which has endured over two years and 350 hours of footage, is my penance for the way I treated my twin sister when she was sick. But I also recognize a good story and know a good deed: By CDC upper estimates alone, Lyme disease may be the fastest growing infectious disease in the country, dwarfing AIDS and West Nile Virus combined. Like my sister, today thousands of patients are told that their symptoms are “in their head” or a result of stress, depression, or “unknown etiology.” They live with chronic, debilitating illness. Left untreated, some die and others take their own lives. Most go through a ceaseless maze of doctors and diagnoses, with few answers and often no insurance coverage because Lyme is not recognized as a chronic disease.

Our film tells the hidden story of Lyme disease, while shining light on the deep, dark fissures in our healthcare and medical research systems. It is meant to open eyes to a danger under our skin that has gone far too long ignored. Awareness literally will save lives.

More and more, my daughter and I are approached by neighbours, by audience members, by readers of this blog...to ask questions and to share their own stories. Numbers quoted by the Washington State Health Department are woefully lower than reality. This is what happens when uneducated doctors are led astray by CDC surveillance guidelines...and the IDSA's blind eye to chronic Lyme.

We extend a particular challenge to the resident and attending doctors of University of Washington's Harborview Family Practice Clinic and their Roosevelt Family Practice Clinic to attend this movie. My daughter would like to look you eye-to-eye, now that she is out of her wheelchair and seizure-free. You owe it to your oath and the good people of Washington State.