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.
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.)
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.