Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
IDSA PANEL VOTES AGAIN TO DENY PATIENTS LYME TREATMENT
The new IDSA review panel released their vote today to uphold the same 2006 guidelines that recommend against clinical judgment by physicians, against antibiotic treatment for chronic Lyme, and against alternative treatments and supplements.
Action Needed - EVERYONE ACROSS THE COUNTRY
Please contact Connecticut Attorney General Richard Blumenthal now, tell him he needs to ensure this process has been properly carried out. Tell him this affects your health and your family.
CONTACT INFORMATION AND SAMPLE BLURBS
Please fax the Attorney General, or if no fax, email, or call the Attorney General.
The IDSA panel upheld all the recommendations in their 2006 Guidelines. They provided lists of items that need to be considered in the "next" upgrade of their guidelines, thereby relieving themselves of responsibility of acknowledging that changes are needed to these current guidelines.
A crucial statement on testing, the essence of which appears throughout the guidelines and is most often used by doctors and insurers to prevent patients receiving diagnosis and treatment, generated a 4-4 vote, not meeting the supermajority required to pass it.
To thwart the process, IDSA characterized the testing issue as a non recommendation, and dismissed the statement from consideration through the process.
The IDSA received a large volume of case reports & case series that attested to clinical improvement with long term treatment.
However, it dismissed the reports based on clinical judgement submitted by experts in the field that would normally carry significant weight. Additionally, the IDSA discounted the controlled studies which indicated improvement after long term antibiotics.
The Lyme patient community cannot wait for the medical establishment to address the problems with this disease. We need treatment and relief now.
The ratification of these guidelines by IDSA Panel members becomes another nail in the coffin for those afflicted with Lyme disease.
We call upon you to examine the entire process to determine compliance with your stated requirements and to take further action should grounds be found to do so.
Your name, address, city and state
Sample Phone Blurb
I am calling today because an injustice is being done to Lyme patients throughout the country, and you are in a position to rectify this wrong.
The Lyme patient community cannot wait for the medical establishment to address the problems with this disease. We need treatment and relief now.
Please continue your investigation of the IDSA.
FOR MORE INFORMATION
For more details about the decision go to the Lyme Disease Association website, www.LymeDiseaseAssociation.org and the Lyme Policy Wonk.
LYMEPOLICYWONK: IDSA Reports No Change in Guidelines--The Fat Cat Ate the Canary
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I called yesterday.
The feeling I got was-it may wait till after the elections.
But by all means keep calling and emailing.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I sent an action letter to Blumenthal....and also sent this nasty letter to the ISDA Society! F' THEM!
The IDSA panel did not comply with the voting requirements of the Connecticut Settlement Agreement for a critical recommendation in the guidelines--the need for a positive lab test before patients can be treated. In fact, Lyme lab tests are insensitive and miss many cases of Lyme, including mine!...causing years of suffering and almost losing my family.
Many Infectious Disease doctors I have spoken with agree with me that you must use patient history and symptoms to make a diagnosis. It even states this in the Infectious Disease text books at Universities! How onw can think you can accurately test for so many strains of a disease which supresses the immune system is BEYOND me and many doctors to whom I speak. Don't even get me started on the co-infections!
The IDSA sidesteps the need to follow the rules by claiming that this point is not really a recommendation. In fact, it is a strong recommendation, repeated throughout the guidelines and relied upon by insurance companies to deny treatment reimbursements to seriously ill patients. It should be subject to the same voting procedures as every other recommendation in the IDSA guidelines. We will hold the IDSA to the Settlement Agreement and require them to re-do the vote on lab tests. The health and well-being of patients and their families depends upon it.
It took my cousin nearly 4 years to get rid of Borrelia, Bartonella and Babesia. I know plenty of people who had to go down the same long path to get well, thanks to the couragous doctors who are willing to treat patients till they are better - as it should be!!!!!! The ISDA is CRIMINAL!
Sincerely, Richard Veeck
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
On the "to do" list for Mon!
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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