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Sunday, May 2, 2010

May: World-Wide Lyme Awareness Month

Yesterday, around the world, folks stood up for the Lyme disease community. People wore green, in ribbons, clothing, bracelets, buttons, and necklaces. Signs were put up that said, "Lyme Lives Here," or, "Surviving Lyme" in windows and on gateposts. Radio spots and interviews talked about Lyme and screenings of the Lyme documentary Under Our Skin were put on, including our screening at the Key Center Public Library. This push will be going on for the entire month of May. We do it to be heard...and we do it for you.

May is Lyme Awareness Month because it is the most dangerous month of the year. In May, nymph ticks are no bigger than poppy seeds but can still carry the same stew of infections as the easier to see adult tick. It's been estimated that thirty percent of ticks carry infections in the Northern California Redwood country, and they just love the cooler, wet climate we have around Puget Sound. Here, ticks can happily live out their two-year cycle of life, tucked in the wood or leaf pile...riding on the deer..or birds..or rodents.

Inside all the screenings, the interviews, the community outreach and every advocacy conversation, is the hope to educate my community. I want folks to be able to enjoy the wildness that beautifully surrounds us, knowing how to keep themselves safe from a debilitating mish-mash of bacterial infections. Then there are those screenings that mean the most to us, like yesterday, when a family recognizes their loved one in the cases presented within the film. After years of being told it's all in their head, they find a possible physical cause and other families with similar stories to validate theirs.

It doesn't get any more grassroots than families, who are sick and tired, pulling together to wave the green, to show "Under Our Skin," to shout in very small voices that there is an epidemic in the world that is being allowed to grow, unchecked, so that a small group who call themselves doctors and medical researchers can hold on tooth and nail to their already tattered reputations. Never mind that it's going to cost millions of dollars in this state, in this country, and in this world, to uphold that fantasy. Never mind these boots of denial, stomping across my daughter's sick-bed, stomping across the graves of our friends and world-wide Lyme community.

I don't want to have political arguments about health-care reform, but I will fight for my daughter and all the good people of Washington State to have the right, when dealing with Lyme and other vector-borne infections, to a choice. Let the patients and families choose whether to follow the IDSA Guidelines of doing not enough in the beginning of infection and NOTHING for the tertiary stage, or the ILADS Guidelines that use long-term antibiotics and supplements to maintain a quality of life. State after state after state, that has become soaked with the Lyme bacteria, has passed legislation allowing this choice. California already has laws in place. It would behoove Washington to do the same.


Kim Thompson said...

I appreciate this passionate post.

Lorraine, would you mind explaining and expanding on the laws in CA that you mention at the end of your post? I was not aware of this and would like to learn more and what can be done here in WA. Thanks!

Lorraine Hart said...

Basically California (and many other endemic states) has laws on the books that protect the Lyme-literate docs. They state that it is the choice of the patient...informed consent, if you to which course of treatment should be taken. According to the Infectious Disease Society of America, 28-35 days of antibiotics is all that is required for Lyme disease...and that there is no such thing as an ongoing infection...despite a mountain of evidence to the contrary. Nothing else is done by them except to abuse chronically ill people, telling them they're making it up. Well, you can't make up interrupted brain-waves or seizures. One of the head docs, Dr. Wormser, is allowed to call these desperately ill people "Lymenuts" and still hold his job as being in charge of 'helping' Lyme patients. I'd like to sue the man for hate speech...but I don't have time for side-trips.
Minnesota just put a law on the books, putting a stop to Lyme-literate docs witch-hunts because they have such a problem.
At least we are more willing to allow both opinions, unlike the IDSA.
If we don't put this law on the books, our specialists will move to California...and patients will take their money out of state for help...while costing Washington millions in Disability and Medicaid, with no return. You can bring it down to basic economics, if nothing else.
Did I answer your question enough?

Kim Thompson said...

And some! Thanks! A lot to digest and to think about--I ponder who is (or can) drive this legislation on the WA state side.