tincup, thanks for posting; i had NO IDEA it meant our llmds !! so glad you explained this to neuro fog betty.
thank you ILADS AKA CHRONIC LYME LITERATE DRS. for the wonderful letter, and most importantly ...
for treating each one of us taking a personal interest in trying to get us into lyme REMISSION...
we are so sorry for what you've all been up against; your state's health depts.
dr. jones, you are still in my thoughts and prayers that your hearings will END NOW, and they won't cause you undue stress while you have chosen to treat lyme kids after retiring!!
we'll continue helping you fight this nasty system trying to take away your medical license and ALL others they notify!! Posted by Tincup (Member # 5829) on :
BG...
Nice to see you back!
Posted by METALLlC BLUE (Member # 6628) on :
IDSA is about to be owned.
Posted by Need Lots of Help (Member # 18603) on :
I hope so!!!!!!!!!!!!!
Wooohhooooo!!!!!!!
Shalome
Posted by seekhelp (Member # 15067) on :
I wish I could figre this out. Again, the website black text on dark grey background. Impossible to comprehend. Posted by feelfit (Member # 12770) on :
Awesome! Their going down down, down,down.
Who can ignore these peer reviewed facts? and the other group of physicains and surgeons jumping on board too!
Posted by nenet (Member # 13174) on :
quote:Originally posted by seekhelp: I wish I could figre this out. Again, the website black text on dark grey background. Impossible to comprehend.
(I just posted this for someone else on the other Lyme Policy Wonk blog thread - which you should check out as well - someone posted the text for others to be able to see there:
It sounds like the blog CSS code may not be optimized or even viewable for all browser types and versions/operating system combinations. I have seen another person complain about the same thing with that blog site.
What browser type, browser version, and OS you are using? Maybe if you let them know they can check it out. You might have to use a different browser to read the site, or update to a newer version, if what you are currently using does not support their version of CSS.
I can't find any contact info for the blog owner. Maybe it is on the CALDA main site? I get lost on the site (Neuro-Lyme), trying to find contacts.
Posted by JKMMC09 (Member # 15795) on :
This is great! I'm so proud of my LLMD, Dr.L, for being a part of this project! Posted by nenet (Member # 13174) on :
This is wonderful news - Thanks again Tincup!
Here is the text for those who cannot see it due to Browser-incompatibilities:
"Pop the cork off the Champaign and let the fireworks rip! ILADS made its document submission for the IDSA Lyme disease review panel. And the weight of evidence was staggering--
Who: I headed the working group, which consisted of Drs. Cameron, Stricker, Liegner, Maloney, Green, Phillips, Zackrison, Tao Liu, Ph.D., Allison DeLong, M.S., and Barbara Blossom, B.A.
When: Submission received by IDSA on April 23rd.
What: Over 1600 pages of analysis and research studies. Close to 300 pages of original analysis contesting IDSA recommendations.
Why: Because the recommendations are--well, are not just, and because, well, because the ``recommendations'' are treated as ``mandatory'' by insurers, medical boards, hospitals--you get the picture.
How many? 10. The working group contested the following recommendations and assertions:
The Lab Diagnostic Test Requirement--Page 1090
The Restriction on the Use of Clinical Judgment--Pages 1089-90
The Prophylaxis of Lyme disease--Page 1100
The Denial of Persistence--Page 1118
The Restrictions on Specific Therapeutic Options--Recommendation 5, Page 1105
The Early Lyme disease Treatment Duration--Recommendation 1, Page 1104
The Late Neurologic Lyme Disease--Recommendation 3, Page 1113
The Recommendations for the Treatment of Arthritis -Recommendations 1 and 2, Page 1113
Post Lyme Disease Syndrome Definition--Recommendation 1, Page 1120
Post Lyme Disease Syndrome Treatment Limitation--Recommendation 2, Pages 1120-1121"
Posted by Keebler (Member # 12673) on :
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Whoa . . . and I'm crushed from the exhaustion of just trying to answer a few posts here a day!
Oh, my . . . how very kind of them to do all that work for us.
-
Posted by METALLlC BLUE (Member # 6628) on :
I think demonstrations nationwide need to be done. Now is the time to get out from under their thumbs and crush their souls.
We have so many factors in our favor now, we need to surge again, another massive wave of patients, families and loved ones -- advancing politically is what makes news in a time like this. We need to show the world that this issue is happening, because it's only been in the media briefly.
We need to keep it in the media -- that the IDSA did what they did.
Posted by Tincup (Member # 5829) on :
J said... "This is great! I'm so proud of my LLMD, Dr.L, for being a part of this project!"
Me too. He is amazing... always doing wonderful things.
Next time you are there, please thank him for me.
ALL these folks are too cool!!!
Posted by nenet (Member # 13174) on :
Here's a possibly dumb question, but...
Can us regular folks somehow someday see a copy of the full ILADS submission? Will it be digititized and put online for download? Or maybe made into a book or burned to DVD and sold for a non-profit Lyme cause or charity??
I for one would LOVE to have access to that great wealth of knowledge and analysis!
Posted by bettyg (Member # 6147) on :
address to write a person a thank you to these drs!!
ok here is the address:
Association of American Physicians and Surgeons, Inc.
601 North Tucson Boulevard, Suite 9,
Tucson, Arizona 85716-3450
and the attorney that composed the letter is: Andrew Schlafly. I did not e-mail but sent a handwritten letter and a photo of my daughter showing them who they were helping.
I figure the personal touch always works... from lymebuster to me...
[ 04-25-2009, 09:29 PM: Message edited by: bettyg ]
Posted by JKMMC09 (Member # 15795) on :
quote:Originally posted by Tincup: J said... "This is great! I'm so proud of my LLMD, Dr.L, for being a part of this project!"
Me too. He is amazing... always doing wonderful things.
Next time you are there, please thank him for me.
ALL these folks are too cool!!!
Will do Tincup! I'm seeing him on Monday Posted by paulieinct (Member # 17514) on :
Super news. I'll bet the IDSA worms had to change their diapers after seeing that 50 lb. tome come in just before the buzzer sounded.
Posted by Beverly (Member # 1271) on :
WOW! Just Love those LLMDS!!!!!!!!!!!!!! Posted by Tincup (Member # 5829) on :
Nenet said...
"Can us regular folks somehow someday see a copy of the full ILADS submission? Will it be digititized and put online for download? Or maybe made into a book or burned to DVD and sold for a non-profit Lyme cause or charity??"
I've been asked that question by several folks by email already.
My GUESS right now is that it won't be released (if it ever is) until after the IDSA gets buried under it.... good and deep.
My GUESS is this whole review process won't be over till more toward the end of the year ...
And that is only IF the new panel does their job and there are no problems.
I will keep an ear out and share any news I get about it.
I just know a number of folks aren't sharing their documents right now.
We want them to be a SURPRISED!
Posted by nenet (Member # 13174) on :
Tincup that makes total sense, and I can't tell you how excited I am for what good this might do.
Thank you for offering to keep us updated on whether and when the submitted materials might be publicized.
I feel pretty darn lucky to be in treatment for Lyme right now, when so many great people are working so hard for us.
I wonder if my LLMD added to the submission. I would love to thank him when I see him in June.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by seekhelp: I wish I could figre this out. Again, the website black text on dark grey background. Impossible to comprehend.
Glad to know I'm not the only one "in the dark!"
What's this FROM??
Posted by Keebler (Member # 12673) on :
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What link are you referring to?
I did not see one that has that presentation. The original link in the first post goes to an article that is black type on white. As seekhelp's post is closest to that link, I can only assume that is the one to which he refers.
The first paragraph is bolded and that's bit hard to see but it's a short paragraph. Could the dark grey borders be "pulling" to the eyes against the white background of the article - or visa versa?
If anyone is seeing dark grey background at this link, check your computer (sometimes the color values need to be recalculated):
While I did not notice it with this link, yes, it's very hard to read some web pages if the balance of tone (and contrast) is not just right. Lyme patients seem to have more trouble for various reasons due lyme's effect on eyes, brain, and even the inner ear. Inflammation issues also contribute to this.
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so glad you explained this to neuro fog betty. ![[group hug]](graemlins/grouphug.gif)
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