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Sunday, April 18, 2010

Getting In Gear For May

Terribly sick patients, their terribly tired caregivers and goodhearted close friends have been trying to bring Lyme disease to the attention of this state, this nation and, indeed, the world. There is no money to back our movement...we have all gone into debt, just dealing with a disease that requires so much in its chronic stage (thousands and thousands of dollars worth) outside of what any insurance company will pay for care and medications. We have a hard time organizing because it's just us. Family and friends often desert Lyme patients, or stay as much on the periphery as possible because it's so difficult to understand the myriad of physical and psychological symptoms (each with the come and go of some unseen, evil puppet-master) caused by Lyme and co-infections. Confusing disinformation from the self-feeding IDSA panel (with ties to insurance and pharmaceutical giants) trusted to make guidelines, doesn't help.

Can you try to imagine for just one minute what it's like to have your daughter, wracked with pain and exhaustion, turn to you and say, "I wish I had Cancer, instead of Lyme, so that I could get some help...and just a little respect." It twisted me.

We rejoice that many major illnesses like breast cancer and heart disease have been able to get the public's attention and support, educating so many...saving so many with the funds raised...but Lyme is saturating this country at an estimated nearly half-million new cases each the fastest-growing vector-borne disease in the world today and still, we have barely a voice to tell you of the devastation caused when this infection goes untreated and into its tertiary stage.

The good news is that, early in it's first stage, Lyme can be taken care of with a six-week course of oral Doxycycline! If you knew something that could save people from unnecessary suffering, save them from dying, wouldn't you shout about it till you were beyond hoarse? Well that's what I do, whether I have the time and energy or not, because there are so few working for so many on absolutely no budget.

A picture is worth a thousand words, they say. I hope that's true, for it's the basis of our poster to kick off May as Lyme-Awareness Month. I'd like to thank Dale Goodvin for making my idea an even better reality with his photography and graphics work. Please remember, Lyme is not a disease in some far-eastern state. It lives right here in Washington. Learn how to keep safe and enjoy a wonderful Summer in our beautiful state.


Kim Thompson said...

Lorraine, thanks for this post. Is there a way to blow up the poster larger to see the specific photographs? I tried, but no luck.

I strongly believe that the Lyme community and the Autism community should band together hand in hand for two reasons. One: Autism families feel isolated, unsupported, we go into debt too to find treatment, and many in the medical communities dismiss us. Two: Who is to say that Lyme and Autism aren't linked? I wonder, just wonder, how many children are considered "autistic" when it's really Lyme? I suspect that these conditions get confused. Thus, I think there's needs to be a powerful coalition of families that CAN'T get help, funding, or recognition. Together, many voices, would be a powerful thing, eh?

My child begged me for a cure for his autism. Begged. Please help me! Similar to what your child said to you.

No child, anywhere in the world, should have to beg to be helped.

Stephanie Frieze said...

Your tireless crusade against lyme overwhelms me, Lorraine. I am looking forward to serving you some tea. :-)

Kim Thompson said...


Lorraine Hart said...

Oh how I love my pals! Thanks for tea Stephanie, it was great to see you.
Kim, well you know we have put forth a lot of the information that links Lyme with Autism...and we have always wanted to see you son tested, just in case. I think you're right about all the families banding together...Lyme, Autism, Lupus, ALS, MS...Lyme imitates over a hundred different diseases. Anna was told by a neurologist that she COULD say she had MS.
Hmmmm...wonder why the pic didn't enlarge, 'cos it's a big poster..20x30. I'll try and email it to you, see if it gets any bigger then, sorry!
Good news is that we've really done a PR push on the May 1st screening and hope for a good crowd.

I think, if they can make some research inroads with bacteria, viruses and the body's own immune system...we will see miracles. Meanwhile, a lot of money donated for Lyme disease gets put in the pockets of those supposed to help us. Please ask our state Attorney General to support Connecticut's A.G. in his push to clean up the IDSA panel that make Lyme guidelines for the country.