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IDSA Lyme Disease Review Panel Announces Public Input Period and Hearing Date
--------------------------------------------------- (Link at bottom - IMPORTANT!)
Submissions should be made to the attention of the ``IDSA Lyme Disease Review Panel'' at: [email protected]
"Feb. 2 - IDSA has convened a review panel to examine whether the Society's Lyme Disease guidelines, published in 2006, should be revised or updated based on a rigorous review of the medical and scientific evidence on the diagnosis and treatment of Lyme Disease.
The Review Panel is initiating a 60-day input period to allow the public to submit information to ensure that all points of view are taken into consideration. There will also be an open public hearing to offer a forum for the presentation of relevant information on the diagnosis and treatment of Lyme Disease.
The 60-day public input period is now open."
I encourage everyone to talk to their LLMD's or others with medcial / scientific backgrounds to comment. Even letters from regular people referencing studies/research may prove helpful.
I don't know if this is for letters of personal experiences but thats up to anyone who wants to respond and I think being inundated by the LD community is necessary!
Note - there will also be a public meeting in Washington DC on Monday, April 27, 2009 (TBD location) - a good time to organize and show support for Lyme and disgust at IDSA.
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Yeah i wrote them a letter but i did not include any Doctors names. i do not trust them as far as i can throw them which isn't very far. we all should write them anyway it can't hurt to hear that we are actively seeking to expose their lies.
Posts: 128 | From web | Registered: Dec 2008
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I have been suffering with CHRONIC LYME DISEASE for about 8 years now and I just want to tell you how awful this disease really is. No matter what you say you can't explain away all my 30 plus symptoms by blaming it on Depression that's too easy and you need to come off of that broken record tell me what do you think is causing all my symptoms if not Lyme? I have a positive Lyme test and Spect scan for Lyme and Lyme Damage.
There are literally 100s and thousands of us on line that are really suffering and your so called expert guidelines are so bogus and VERY WRONG! So many people out there that are suffering and so many walking around with Lyme that have been wrongly misdiagnosed with something else because Doctors are taught that Lyme doesn't exits after 4 to 6 weeks of Treatment. Why are you so Hell bent on your position with Post Lyme when we have so many peer reviewed articles now that Lyme can be past on from Mom to child at birth so many peer reviewed articles that show death due to Lyme Disease.
It's just a matter of time now when this Disease will be so wide spread that you will not be able to maintain your position anymore Lyme is everywhere Europe Canada not just US and it's spreading very fast now because it's not just spread by a tick anymore but it can be spread much like Aids now. Many Husbands testing positive because their wife has Lyme and the other way around too. We know there are a 100 different strains of Lyme now and there are some Docs believe the tick is not the only way to get it what about mosquitoes? If you can get west Nile through mosquitoes why can't Lyme Borrellia be transmitted (common sense?)
I am praying for day that Lyme Disease becomes a specialty and Patients will be sent to Lyme literates who really know what's going on with this Disease. You don't know how many Docs tried to put me on anti Depressants because they thought I was Depressed? (How awful and pathetic is that) It's like telling a Cancer Patient you don't look sick so it must be all in your head? (Horrible and very cruel) I read so many stories on support groups where Children are suffering with this Disease and because of all the Arrogance and ignorance to Lyme they are not getting diagnosed fast enough to prevent Permanent Lyme Damage.
I would Challenge any Post Lyme doctor to take some blood from a Lyme Patient if you believe it's only a post condition you have nothing to worry about. I double dare you to do it which I know you won't because you are not that stupid. Lyme is much like syphilis it is spirochetal and it imitates many different things that's the whole problem why we are being ignored and labeled as crazy people. The aches and pain of daily living is the most pathetic thing I ever heard of before and one of the cruelest things a human can say yet alone by a Doctor.
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