posted
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!!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I wish I could figre this out. Again, the website black text on dark grey background. Impossible to comprehend.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
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!
Posts: 3975 | From usa | Registered: Aug 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
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
This is great! I'm so proud of my LLMD, Dr.L, for being a part of this project!
Posts: 371 | From CT | Registered: Jun 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
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"
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
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!
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...
posted
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.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
WOW! Just Love those LLMDS!!!!!!!!!!!!!!
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
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??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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