Tag Archives: IDSA

Thank You! Wormser is OUT!! 

10 Dec


Thank you to all who signed the petition and got Wormser out. This guy has been an extra pain to the Lyme community for years. As you know I’ve been on antibiotics for 6+ years and holistic, homeo, naturopath, herbal, western medicine, rife….etc and my last Lyme test came back “very active” and positive after all those years of antibiotics yet they claim 10 days of antibiotics and you should be “cured” although Lyme could possibly go into remission not cured. Most don’t get their Lyme into remission and have late stage Lyme or chronic Lyme disease and nothing can stop it or make us feel any better. It’s not “daily aches and pains” as “Doctor” Wormser says! I’m sure those of us suffering know the huge differences in daily pains and the hell we go through. 

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Help Remove Outdated IDSA Guidelines From The NGC

15 Apr

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Please Sign This Petition

Click HERE to go to lymedisease.org and sign the petition for a great cause. We thank you for your help and please spread the word.

Why The Petition Is Important

Whether you or someone you know has Lyme disease or not we need your help and support!  The current IDSA guidelines are outdated and inaccurate. Those of us who suffer from this horrible disease have to fight for everything just to save our lives. The IDSA guidelines are just one of many things the Lyme community has to protest yet nothing is being done to update the guidelines yet. These guidelines are a Lymies worst enemy.

The IDSA believes that 2-4 weeks of antibiotics will “cure” Lyme disease and they do not believe in Chronic Lyme disease. Chronic Lyme disease is all too real and the IDSA could not be any more wrong. When a Lyme suffer is prescribed antibiotics from their Lyme Literate Doctor they are given 1-3 months worth of antibiotics usually. We go to the pharmacy to have the prescriptions filled only to find out 5-14 pills are all that will be covered by insurance. Then we have to fight with insurance to try and get at least a months worth filled. After going back and forth with phone calls for weeks the insurance may give in and cover one month or they will deny the coverage.

As a disabled Lyme sufferer I can tell you the last thing we need is to be on the phone fighting just to live. It is highly stressful and not good for healing. For me my insurance only covered 5 pills of Zithromax for my first treatment. I paid $120 for the rest out-of-pocket. I was prescribed Merpon and at my pharmacy it costs $1,500 out-of-pocket. I was only covered for one months worth and the next 2 months were on me. After having no income and being single ,of course I do not have a dime to my name so I couldn’t continue with that treatment. I could go on for days but this is just an example of how these guidelines can affect us down the line.

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From The Lymedisease.org Web Site About The Guidelines
Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.
The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.
This is wrong because:
  1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;
  2. The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
  3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and
  4. The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.
Sign the petition to urge:
  • The NGC to remove the guidelines as its listing rules require.
  • The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease.

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Sign the Petition

HERE

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Thank You Dr. Phil – Video of Dr. Phil: “Deadly Consequences” (04/13/12)

14 Apr

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Dr. Phil “Deadly Consequences” Aired on April 13, 2012

 

I will have to say I was a little nervous and skeptical about the Lyme disease episode being viewed by millions. I was hoping it wasn’t one-sided and showing the IDSA as the victor. I just finished watching the episode and although I wish more information was exposed on the show such as coinfections, it was still a win for us Lymies.

I applaud Dr. Phil for exposing the world to Chronic Lyme disease. Chronic or Late-Stage Lyme is all too real and a living nightmare. It will change lives in the worst way and break the strongest person down. Thank you Dr. Phil for educating the public and exposing our suffering. I hope to see more media coverage of Lyme disease in the future.

A HUGE thank you to Brooke Landau, Stephanie Vostry, Dr. Phil’s staff member and Chitra Bhakti, MD (Lyme Literate Medical Doctor/ LLMD).

 

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In case you missed the Dr. Phil show today here is the episode and some other footage.

 

Dr. Phil – Deadly Consequences (Video 1 of 3)

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Another Uneducated Posting/ Rant About “Chronic” Lyme Disease

11 Apr

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Dr. Phil – Chronic Lyme Disease Episode (Airing April 13, 2012)

10 Apr

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IDSA – Infectious Disease Doctor’s Facebook Post to “Chronic Lyme Crowd” (Update)

16 Mar

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