posted
I have received a reply to my letter to the CDC regarding there being two options for the treatment of Lyme, and that both should be recognized by the CDC. Here is the reply that I received:
Thank you for your letter regarding Lyme disease. I appreciate you taking time to share your concerns with the Centers for Disease Control and Prevention (CDC). Please excuse the delay of this response.
We understand that some patients feel passionately about the need to change the recommended protocols for diagnosis and treatment of Lyme disease; however, there is simply not sufficient evidence to prove that available alternative tests or treatments are effective. In fact, there have been some very serious complications, including death, in patients receiving alternative treatments. Improved diagnostics and treatment for Lyme disease are among our greatest concerns. As soon as there is evidence from clinical and scientific research for more promising approaches, please be assured that CDC will work aggressively to distribute such information to physicians and to the public.
Thank you again for sharing your views. Please be assured that CDC takes very seriously the threat that Lyme disease poses to public health.
Sincerely,
Julie Louise Gerberding, M.D., M.P.H. Director
Posts: 119 | From Southwest Florida | Registered: Sep 2005
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I have news for you ... this is a form letter they are sending out to all of us who write to them about this issue. A friend of mine received the EXACT SAME LETTER. Guess they are not bothering to read any of them, just filing them in file "trashcan".
"there is simply not sufficient evidence to prove that available alternative tests or treatments are effective"
She is nothing more than a parrot, spouting off what she has been told. Guess that new study by the CDC hasn't crossed her desk. Talk about being railroaded!
What BS.
Posts: 2275 | From NC | Registered: Oct 2000
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I got the exact same letter too.
I sent it back to them with a few comments written in beside their comments.
Interesting....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here's my letter back to someone at the CDC who actually responded to me personally....
Hi *****~ I just thought I would share with you that I did hear back from Julie Gerberding at the CDC. Unfortunately, her letter to me was a standard form letter that gets sent out to anyone who writes to the CDC with regard to lyme disease. How do I know this? It is posted on a lyme web site...several of us have gotten the exact same letter.
Unlike you, who actually read my letter, she did not. She did not respond to my specific concerns at all. It is sad to see my efforts reach a dead end. Sadder still that the CDC does not care enough to read our concerns with regard to this disease.
I did return her letter to her...and wrote in my concerns (again) next to her comments.
I want to thank you again for taking the time to read and respond to my letter. People like yourself give me hope that change is possible. If you can think of someone else to send along my letter and concern to besides Ms. Gerberding, please do. She obviously, cares little for those who suffer with Lyme disease.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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quote:Originally posted by Nancy-FL: As soon as there is evidence from clinical and scientific research for more promising approaches, please be assured that CDC will work aggressively to distribute such information to physicians and to the public.
Thank you again for sharing your views. Please be assured that CDC takes very seriously the threat that Lyme disease poses to public health.
There's PLENTY of evidence that long term treatment works. They just don't WANT to see it for what it is!
And NO, they DON'T take seriously the threat to public health.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Can I just add here, please don't get discouraged and give up. SAVE those letters and send them somewhere that might actually make a difference: your Congressperson or Senator. Please let me stress here...the CDC does not lead in matters of public health, they follow. They will not make watershed decisions or break ranks with professional associations. Congress has the power/ability to legislate where public health dollars go. THIS is the route.....
Posts: 393 | From Washington, DC | Registered: Jun 2005
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bettyg
Unregistered
posted
quoting Julie....and breaking up that LONG SOLID BLOCK OF TEXT ....
"We understand that some patients feel passionately about the need to change the recommended protocols for diagnosis and treatment of Lyme disease;
however, there is simply not sufficient evidence to prove that available alternative tests or treatments are effective .
In fact, there have been some very serious complications, including death, in patients receiving alternative treatments .
Improved diagnostics and treatment for Lyme disease are among our greatest concerns . from Betty .... give me a break Julie! your GREATEST CONCERNS my butt!
As soon as there is evidence from clinical and scientific research for more promising approaches , please be assured that CDC will work aggressively to distribute such information to physicians and to the public.
Thank you again for sharing your views. Please be assured that CDC takes very seriously the threat that Lyme disease poses to public health.
Boy, what a blow job kissing us all off! hog wash!
Timaca, glad you got a PERSONAL response and replied back so eloquently! Way to go girl! Bettyg
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Connie, I realized that this was a form letter, but had not seen a copy posted on Lymenet for others to read.
docjen, I agree that the responses could be of value in talking to Senators, Congresspeople, etc.
Lymetoo, I agree, I guess people who are receiving long-term treatment and who are getting better is not considered evidence.
And Timaca, I too am glad that you received a personal letter and that you responded as you did.
And Bettyg, let me repeat, HOGWASH!
Posts: 119 | From Southwest Florida | Registered: Sep 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
What exactly does she mean by 'alternative' treatments? Does anyone know. (does she mean long-term abx or IV peroxide, Salt and C, Samento, what??)
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
"As soon as there is evidence from clinical and scientific research for more promising approaches"
With the dirth of LL research & $, many of us will be in assisted living or on Geritol by the time they get their research.
In the absence of LT abx & antimalarials, what else do they have to offer us that's efficacious & safer?
What about coinfections, metals, parasites, molds etc that seem to be indiginous to those with chronic Lyme?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Don't Like Liver, I am pretty sure she would consider anything but one 3 week course of low dose Doxy to be "alternative treatment". Pathetic.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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