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Good News for Lyme sufferers



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05/02/2008 04:49
goldfinch
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A settlement has been announced in a landmark investigation of Lyme disease diagnosis and treatment. The settlement forces a complete review of the IDSA's guidelines by a new panel free from conflicts of interest and will exclude previous panel members. For more information go to http://www.newsday.com/news/local/wire/connecticut/ny-bc-ct- -lymedisease0501may01,0,4372680.story

Things may be starting to change for the better in regards to getting the best possible treatment for Lyme disease.

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05/02/2008 08:07
Julie4848
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Hi:

Just read this yesterday, things might start to look up...


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05/02/2008 08:11
jaime1978
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ahhhh, there's our balance! it could start to swing for us!!!!!!
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns


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05/02/2008 12:46
tomro62
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Wow goldfinch, you were all over this! I found out earlier today myself and was going to post a link here.

I have read the press release from the CT Attorney General and the IDSA...both quite different, as you could imagine, and the entire legal agreement. Kind of fun to read, actually.

I have never been PO'd at the IDSA, because they are doctors, healers...and I respect that. However, it was fairly transparent that they were ignoring contradictory evidence to their findings. This agreement will allow a fair and balanced forum for this evidence to be presented, including a public hearing that will be broadcast live over the internet, via the IDSA website!

I am going to contact LymeMD, an organization here in Maryland, and get together some donations to rent out a hotel conference room and have a place for folks to gather and view the hearing. What a great networking forum it could be as well.

Everyone talk to your local support groups and see if you can try something like this. Not everyone has access to a computer to view from home, so let's help them out.

I have already started an open letter to the review panel, and I am going to gather as many signatures from Maryland as possible. The letter is to address comments made by the members of the 2006 panel calling Lyme a social disease and evidence of mass hysteria...further evidence, in my opinion...that the original panel members were personally biased against effective Lyme disease treatment to begin with.

Okay, I need to calm down a little here. My soapbox is so high I'm getting a nosebleed!

Although this is good news, I am prepared for what would be the worst for us...that the guidelines will be upheld. However, at least the process will be fair and balanced. The options the review panel can choose are 1) to leave all the guidelines as they are, without change 2) have the guidelines changed in part, or 3) convene a new panel to completely rewrite the guidelines.

I'm thinking the best we should expect is a partial change. There will be too much shown, I believe, for the panel to leave everything as it is. To rewrite things totally would be almost a condemnation, which I don't think will happen.

So let's do some major finger crossing...well, at least those of us who can do so without pain...ARE YOU LISTENING IDSA!

I will keep an eye on the Lyme medical community and post any info about the hearing as I find out about it.

Tom

I am not a doctor, and nothing I say here should be taken as medical advice of any kind.
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