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Originally posted by valymemom:
M,

Sorry I wasn't clear and maybe you have posted what you wrote to all the congressmen before.

I just wanted to see what you wrote to them to help me organize/compose my unorganized thoughts.

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__________________________________________

Dear Mr. President, Senators Boxer and Feinstein, and Rep. Herger,

I ask for your support for two Congressional bills, now in committee, (S.1479, H.R. 3427). As you know, those bills would provide funding for prevention, education, treatment, and research activities related to Lyme disease.

The recent passed IDSA Guidelines are already causing untold harm to sick people. I'm sure you know the IDSA is being investigated by a State Attorney General for possible anti-trust breaches in formulating these arbitrary guidelines, which fly in the face of numerous peer-reviewed studies on the tenaciousness of the lyme bacteria. These new "Guidelines" declare there is no such thing as chronic lyme disease -- in bold contradiction to previous study conclusions of their chief author.

Most people with late stage lyme have been misdiagnosed repeatedly with everything from ALS to multiple sclerosis. Physician education would do much to prevent this. Unfortunately, the very foundation Americans rely on -- the CDC -- continues to mandate the outdated "2-step" testing for lyme, in spite of evidence that 75% of late lyme victims will test negative by ELISA but positive by the more accurate western blot. (Donta ST. Tetracycline therapy of chronic Lyme Disease. Clin Infect Dis 25: S52-56, 1997; abstracts of the VIIIth International Conference on Lyme Borreliosis; June 20-24, 1999; Munich, Germany. Abstract P193). Can you imagine the number of people with late stage lyme whose doctors will simply not test them further based on these CDC recommendations? These sick people are falling through the cracks.

Lyme victims are not getting help. Roughly half of them are children. My daughter, 14, was nearly crippled with knee pain from CDC positive lyme disease. Long term antibiotics returned her to playing soccer. She relapsed and suffered Bell's Palsy. Once again, she improved with antibiotics. The IDSA Guidelines would have withheld treatment from her under the pretext that chronic lyme does not exist.

In my own case, I literally had to save my own life. My neurologist - relying on the above CDC recommendations - refused a western blot despite my endemic area, recalled tick bite and rash, symptoms consistent with lyme, and numerous brain lesions. In fact I was CDC positive for not only lyme but babesia WA-1, a co-infection that he and other doctors are blissfully unaware even exists.

This should not be a partisan issue. I know of no other disease where patients have to fight for proper diagnosis and treatment due to ongoing physician ignorance. In my endemic area of northern California, most doctors continue to believe lyme is "rare." In fact, the only thing "rare" is finding a doctor knowledgeable enough to properly diagnose and treat tick-borne diseases. Physician education is sorely needed. Please support S.1479 and H.R.3427.

Thank you.

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Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | 

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Originally posted by valymemom:
Thank you for posting this. What a help!

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Posts: 1240 | From Centreville,VA | Registered: Mar 2005  |  IP: Logged | 

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Originally posted by bettyg:
WOW MICHELLE, that was some letter your wrote your calif. senators/reps!!

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LOVED IT!!!


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--Lymetutu--
Opinions, not medical advice!

Posts: 96227 | From Texas | Registered: Feb 2001  |  IP: Logged |