Archive for the ‘Activism’ Category

IDSA Guidelines removed from NGC

 

108_bethbell316x316 All graphics used with permission from Alison of http://lymestats.org/.

https://www.lymedisease.org/idsa-guidelines-removed-ngc/

The National Guidelines Clearinghouse–a federal database that provides treatment information to health care professionals and insurance companies–has removed the IDSA Lyme disease treatment guidelines from its website recently. This means that the only Lyme disease guidelines listed on the NGC are those of ILADS, which were posted in 2014.

Last year the NGC revised its criteria for listing guidelines to conform to some of the standards adopted by the Institute of Medicine in 2011 for creating trustworthy guidelines. These standards included using a rigorous evidence review system. The ILADS guidelines, which were authored by Lorraine Johnson (LymeDisease.org), Dan Cameron (ILADS), and Betty Maloney, conformed to the high evidentiary standards of the IOM.

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Because the IDSA guidelines did not comply with the more stringent requirements, they were removed from the NGC.

The IDSA guidelines are currently undergoing revision. LymeDisease.org and the Lyme Disease Association led an effort to gather comments from close to 90 groups protesting the process—which among other things—did not include a Lyme patient as required by the Institute of Medicine.

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LymeDisease.org launched a patient survey called for comments on the IDSA guidelines on March 27 and filed comments from over 6,100 patients in less than a month. After the protest regarding the failure to include a Lyme patient on the panel, in response to pressure by U.S. congressmen, the IDSA suggested that it might reconsider putting a Lyme patient on the panel. We do not know the revision schedule for the IDSA guidelines.

Kudos to the good people working hard for us.  I’d like to think of this as a boycott of the horrifically outdated IDSA guidelines for tick borne illnesses.  Keep your chins up, folks, it’s getting good.

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Category:

Activism, Educational handouts, Uncategorized

Link to Public Hearing

Dear friends,

It was a joy to be able to speak about the plight of Lyme patients yesterday at the Wisconsin State Capital.  Thank you to those who were able to make it.  Thankfully, I only paid physically for the rest of the night and bounced back this morning.  I know many of you will have longer recoveries – but it was worth it!

Here is the link to the hearing.  I warn you – it’s over three and a half hours long but worth the listening.  You will hear from numerous patients with typically horrific stories, representatives from our State, an infectious disease doctor who is a card carrying member of the CDC, and Lyme advocates.  It was clear throughout the hearing that while some members of the board were quite familiar and up to date, many had no idea of what we face.  A lot of education still needs to be done in this area.  I have sent an email to each board member with links and a bibliography to back up everything from the witch-hunts on our LLMD’s, testing flaws, modes of transmission, the inadequacies of treatment, and much more.  If they choose to read it, they will be informed, but from the conversion yesterday, it was clear many didn’t read my previous email, so there is still much ground work to be done.  I speak at approximately 2:40.  For any of you who wish to have a copy of my letters to the representatives, please email me and I will send you a copy.

http://www.wiseye.org/Video-Archive/Event-Detail/evhdid/10432

Keep your chins up!

Category:

Activism, Lyme, Uncategorized

Public Hearing Update #2

The location of the public hearing regarding Lyme Disease has changed from 415 Northwest to 412 East.  

Again, arrive a tad early and ask for directions at the information desk on the main floor.

See you there.

Category:

Activism, Lyme, Uncategorized

BVT Class canceled – Hearing Reminder

I regret to inform you that the Bee Venom Therapy class we had scheduled for Feb. 3 has been canceled.  We plan to do this in the future so stay tuned.  We will have a regular support group instead this Saturday from 2:30-4:30.

Also, please remember the public hearing on item AB768 this Wednesday, Feb. 3, at 10am at the Capital regarding:  Rules regarding diagnosis and treatment of Lyme disease and requiring the exercise of rule- making authority.

https://madisonarealymesupportgroup.wordpress.com/2016/01/26/public-hearing-update/

Please go to the information desk on the main floor and ask for the hearing room (415 Northwest) for the Lyme Disease issue. They will direct you as the Capital is a bit of a labyrinth.

Hope to see you all there

Category:

Activism, Meetings, Uncategorized

Public Hearing Update

After speaking with the office of Representative Sanfelippo, please note that the committee will be speaking on the Lyme Treatment issue first, right at 10:00.  Thank you to those who made phone calls on this matter.

Also, please note that the issue is about getting the Wisconsin State Medical Board to make rules on Lyme Disease treatment, and while that may seem a wise thing at first blush, please know that it is often the folks on this very board who come after LLMD’s for treating outside the horrifically inadequate CDC guidelines.  It’s a bit like asking the wolves to guard the hens.

We need to make sure that the committee understands there is a huge schism in the medical community on Lyme Disease treatment with the CDC on one side of the fence and ILADS on the other – and this fence is barbed.  Never shall the twain meet.  The CDC doesn’t believe chronic Lyme exists and feels Lyme is hard to catch and easy to treat.  ILADS believes in chronic Lyme and that it’s easy to catch and difficult to treat.

There couldn’t be more polarization on this one.  

Also, important to note:  patients rarely have just Lyme or borrelia, but are infected with multiple pathogens (Bartonella, Babesiosis, Mycoplasma, viruses, fungus, and stuff not even named yet) with multiple strains that tests do not pick up.  If you read the Babesia article, you realize they are finding new strains monthly.  https://madisonarealymesupportgroup.wordpress.com/2016/01/16/babesia-treatment/

So, in a nutshell, MSIDS (multi systemic infectious disease syndrome), rather than the limited label of Lyme Disease – is a complex illness that takes time and numerous treatments with a variety of things to be effective.

The best thing this committee can do is protect doctors who dare to treat outside the CDC guidelines

Please go to the information desk on the main floor and ask for the hearing room (415 Northwest) for the Lyme Disease issue.  They will direct you as the Capital is a bit of a labyrinth.

Hope to see you all there

 

Category:

Activism, Uncategorized