IDSA Petition - Please Sign at LDA Website

[blimeyitslymie]

Posted by: "Rose" toil_for_lyme@yahoo.com toil_for_lyme
Sat Oct 21, 2006 10:37 am (PST)
RoseNote: Please go to URL below to sign petition against new IDSA
guidelines. Scroll down to LDA News & Updates and click on "Sign
Petition Here."
======

http://www.lymediseaseassociation.org/

LDA News & Updates

<snip>
New IDSA Guidelines Effectively Stopping Treatment for Lyme
Patients:
SIGN PETITION HERE
[
http://www.lymediseaseassociation.org/referral/Petitions/Petition.php
?id=1 ]

The new IDSA guidelines published in October by the Infectious
Diseases Society of America (IDSA) are already causing patients to
be denied treatment for chronic Lyme disease. The guidelines have
recommended against any long term treatments, listing numerous
specific antibiotic classes not to be given, listing alternative
treatments and even supplements not to be offered to Lyme patients.
Clinical discretion has been removed from treating physicians. We
ask that you, your families, and friends across the country sign
this petition immediately. Lyme treatment is at stake.

Other actions will be forthcoming. Please watch this site for
details as our campaign for patients' right to be treated unfolds.


****TOIL for Lyme****
T = Teach tolerance
0 = Overcome ignorance
I = Initiate insurance reform
L = Labor for Lyme literacy/advocacy

[blimeyitslymie]

----- Original Message -----
From: LYMELITER@aol. com
To: LYMELITER@aol. com
Sent: Monday, October 23, 2006 7:23 PM
Subject: URGENT IMMEDIATE ACTION REQUIRED


Everyone,

I ask that you please sign and ask all you know to sign onto our petition online. The Infectious Diseases Society of America has put all guidelines which are effectively going to stop ALL long term treatment for Lyme disease. Patients already are being affected and it has only been 2 weeks that they have been out.

My family and friends with Lyme will no longer be able to be treated nor will yours. All clinical discretion for doctors is prohibited. This means that doctors will no longer be able to diagnose Lyme disease using their judgment but will only be able to use a bullseye rash or positive bloodwork. It is well established that you can test negative and still have Lyme disease and that bullyseyes only occur in less than 50% of patients, but now docs will be afraid to diagnose that way because these guidelines effectively prevent it, because the doctors will be brought before medical boards at a greater rate than is now happening.

Treatment options not to be used are spelled out, whole classes of drugs, alternative treatments even supplements are listed not to be used.

Everyone needs to sign to stop this travesty which will prevent hundreds of thousands of people nationwide from receiving appropriate diagnosis and treatment for Lyme disease.

The signing process is simple.

I thank you in advance for your help in this serious healthcare/human rights issue.

Go to our LDA website
www.LymeDiseaseAssociation.org


Pat Smith, President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 information line
732 938-7215 fax
www.LymeDiseaseAssociation.org

[Sonsie]

I signed this yesterday. :) I hope everyone else does too.

[blimeyitslymie]

Thanks, Sonsi. This is really important, people. Please go to the link and sign the petition. There are about 3200 signatures at last count. IT ONLY TAKES A MINUTE.

I attended the LDA conference in Philadelphia on Friday; Dr. Stricker of ILADS spoke briefly. There must have been over 500 participants and 80% of them were physicians and care givers. There is a lot of peripheral research that is taking place re: lyme. They had international speakers and experts from US talking about research in genetics, which could lead to better, more acurate testing, how ALS and Alzheimers research can be of value to neuro lyme, neuro testing for lyme, results from the Columbia study on long term abx, dermatology, co-infections, treatment strategies ... there was tons more. Much of it was off my radar screen, not only because I'm not a medical professional, but because I was worn out from travelling there and attending a 12 hour conference!!! The ILADS conference followed the next two days and although I didn't attend, the curriculum looked great.

Pat Smith talked about her meeting with CDC Director Julie Geberding. Here is a link: http://www.lymediseaseassociation.org/NewsReleases/20060719.html

PLEASE sign the petition. And contact your legislators regarding pending legislation for $100 million in funding for LYME. Bills S.1479 & H.R.3427. http://www.lymediseaseassociation.org/SupportFederalBills.html

The squeaky wheel ...

[Sonsie]

Bliimey, thank you so much for telling us about the conference. :) I am so envious that you got to rub shoulders with these people!

Various relatives of mine have now signed the petition. I am so pleased that they want to fight for us too. I hope others here ask family members to sign also. Siblings, aunts, uncles, in-laws, parents, children! No family with a lymie in it is unaffected by the medical community's failure to treat.

[blimeyitslymie]

What a great idea, Sonsi!! I am going to send an email with the link to friends, family, etc.

I think I'll post the link elsewhere on Braintalk too.

I was privileged to get to the conference. And all the "angels" were working to help me get there. I was able to find a really cheap train fare and use reward points for the hotel stay, so I only spent money on taxi fare. Luckily, my husband was able to take the day off to stay with the kids.

I met Dr. F, Dr. B, Pat Smith, and a lot of really interesting people. One woman was a researcher with IgeneX who was telling me how they keep refining the tests, another was a male psychiatrist (who had Lyme) who helps identify teens with Lyme who've been miss-dx'd with psychiatric disorders, a woman who works at a big publishing house in NYC -- who has Lyme herself -- and just published a memoir of a woman with chronic Lyme (can't remember the name of the book), an infectious disease physician who doesn't buy into the IDSA guidelines and many others.

At first I was intimidated to be around so many of the "big names", but everyone was quite friendly and down to earth. It was hard staying focused while talking to everyone, but I did my best. I was acutely aware of how sensitive to sound I have become, the noise during the breaks/lunch and reception almost left me feeling disoriented.

I knew I'd be tired afterward, but am a bit stunned at how worn out I really am and how hard it is to spring back to my less than energetic self :eek: . But it was SO worth it. There are many people out there in the medical community who are trying to help us. That is heartening and provides me with more hope.

Now, we need to get the funding to make it happen more.

[blimeyitslymie]

UP TO 10,331 signatures as of this morning. Kudo's to all of you who have signed and asked your friends and family to sign. To those who have yet done so, PLEASE do it now.

It takes a minute to read the petition and if you agree with it less than a minute to sign it.

This is our time for our voices to be heard. PLEASE don't let it slip away. I think it is particularly important now, as the IDSA has virtually cemented the insurance companies position on not paying for long term IV care.

http://www.lymediseaseassociation.org/

scroll down to LDA news and updates

[blimeyitslymie]

Only 33,972 to get to the magic 50,000 goal!

Next time you talk to your family members, ask if you can sign their names, too.

Thanksgiving!! Print out the petition, get everyone to sign, then enter the names yourself!

http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1

Also, the Endowed Chronic Lyme Disease Research Center at Columbia University is only $100,000 away from their $3,000,000 fund raising goal. If you would like to make a contribution, please click on this link. http://www.lymediseaseassociation.org/

Many Thanks,

Blimey

[blimeyitslymie]

Keep those signatures a-coming folks. We are up to 20,668!! Almost half way to 50,000. We CAN do it. Please forward to friends and relatives. Dont forget power in numbers!!

http://www.lymediseaseassociation.org/

Happy New Year to everyone. Hope it's healthier than ever before!!

Blimey