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Petition to Remove Outdated Lyme Treatment Guidelines from National Guidelines Clearinghouse

February 9, 2012* has dedicated a page to an online petition requesting that the Infectious Diseases Society of America (IDSA) guidelines for medical treatment of Lyme disease be removed from the National Guidelines Clearinghouse list and be updated to reflect current research.

A key reason stated for the petition is that the current IDSA Lyme guidelines, established in 2006, do not recognize the possibility of persistent infection after initial 10 to 28 days of antibiotic treatment. Research since 2006 has found evidence that infection may persist after initial antibiotics where infection is established.

Find the petition here –

The list of more than 11,430 signatures appears to be growing moment by moment – and though signers are required to provide some information to ensure validity, they can elect to remain anonymous by clicking a box.


*, formerly the California Lyme Disease Association (CALDA), is now a national US nonprofit organization dedicated to providing a central voice for Lyme disease patient advocacy, education and research. Thanks to XMRV Global Action Facebook for this news.

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by Sybil Hoffman
Posted on January 30, 2012 at 3:18 PM

Monday, Jan 30 at 10:41 PM

SCOTTSDALE, Ariz. — Doing something as simple as taking a walk used to be something Debra Grizzle didn’t have the strength for.

“I got to the point where it was so hard to get out of bed,” she said. “No energy. I couldn’t exercise.”

Unfortunately, Grizzle’s fatigue and joint pain lingered on. Doctor after doctor told her nothing was wrong.

“I knew something was absolutely wrong,” she said. “That was kind of the fight in me, I kept this fight, to where I knew I was sick, I had to find an answer and so I had to keep searching so that’s what I did.”

“It is very difficult to diagnose this disease,” said Dr. Martha Grout with the Arizona Center for Advanced Medicine.

Lyme disease is a tick-borne infection first discovered in Lyme, Conn., in the 1970s. Most patients get a rash but for many others, only internal symptoms develop.

“They’re not testing for it,” Grizzle said. “They’re not looking for it. It’s not on their radar screen.”  

Currently, the Infectious Disease Society of America recommends doctors give patients an Elisa test, which only screens for Lyme disease.

“All their bloodwork will be perfectly normal,” Grout said. “Their urine tests will be perfectly normal. Their joints will look just a good as my joints. They won’t be swollen, they won’t be inflamed, none of that, OK, but they can’t move in the morning.”

Studies show in 56 percent of the cases, patients whose screenings come back negative are later proven to have Lyme disease, which is what happened to Grizzle. It wasn’t until she got a different kind of test.

“So six and a half years into it, I got tested with a Western Blot for Lyme and I showed up positive,” Grizzle said.

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