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» LymeNet Flash » Questions and Discussion » Activism » 2011 Protest of the IDSA Lyme Disease Guidelines

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Author Topic: 2011 Protest of the IDSA Lyme Disease Guidelines
Paul Mall
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Join us for this Important Event

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Posts: 925 | From Connecticut | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
lizzysmom
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I am definitely going to be there Paul. I went to the DC rally with my daughter and my husband, and it was wonderful to connect in person with people I had only met online. This event could be more important in a way because we might actually get to influence some people instead of general population awareness as in DC.

I hope the docs in attendance of their annual conference will take notice. They are not all cut from the same cloth as Steere and Wormser and Shapiro, there are a few IDSA who suspect their guidelines are insufficient or wrong.

See you there!

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Robin123
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I've heard that too, that some of them are questioning. It would be great if you could reach some of them.
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Robin123
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Idea: people could go in pairs, responding to what's in the guidelines -

one member of the pair wears a billboard of a particular IDSA guidelines statement:

IDSA:
for a recent tick bite,
one pill of doxy
is all you need!

and the other member of the pair has a billboard on refuting it with the correct medical need:

ILADS:
No, minimum 6-8 weeks
antibiotics needed
for a recent tickbite!

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Neil M Martin
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I will not be there as I live on the other side of the country. But I pray your message will be heard, and will have a positive effect.

I wrote the CDC this protest. Maybe put it on one of your posters?

Neil
-----
Dear CDC:

I respectfully disagree with your Lyme disease diagnosis and treatment posture.

http://www.cdc.gov/lyme/diagnosistreatment/Treatment/prolonged/index.html

You deem yourselves wise and authorative, as if you know more than physicians who do not agree with you. You advance an opinion against long term administration of antibiotics to treat advanced cases of Lyme disease (borreliosis).

You have been in this posture for over a decade.

You indicate that "several studies...concluded that... the risks involved were high... a 10-week course of IV ceftriaxone was not an effective strategy for improving cognitive abilities."

In other words, short term antibiotics cure Borreliosis, and if the patient is not cured, well, too bad. Resort to rule one.

But my physician treated me for two years in order to wean me off IV Immune globulin that I had taken to ward off life threatening quadriplegia. IV immune globulin was much more expensive and less helpful for my paresis. Now I have better cognitive and stamina capacity. I am not alone. Many peer reviewed studies indicate Borrelia burgdorferi can survive short term and even longer term antibiotics.

There are two camps in the field. One offers a more liberal treatment approach, and the other a more restrictive approach. You only recognize the restrictive one. Is that not propaganda? To only allow for one side in a debate?

http://arizonaadvancedmedicine.com/articles/lyme_disease.html
http://www.ldsg.org/index.php?id=71

Even the IDSA admits the field is divided into "Point" and "counterpoint."

"Point" http://cid.oxfordjournals.org/content/45/2/143.full

"Counterpoint" http://cid.oxfordjournals.org/content/45/2/149.full

Rather than respect the patient and physician and allow them to decide what treatment works best, you side with the more restrictive approach to diagnosis and trestment, and marginalize the other side. Is that what you want for youself or your loved ones?

I respectfully protest.

IDSA is "IN" with the CDC
http://www.cdc.gov/search.do?queryText=IDSA+%2B+Lyme&action=search

ILADS is "out"
http://www.cdc.gov/search.do?queryText=ILADS+%2B+lyme+disease&action=search

Neil Martin

--------------------
Neil

Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
Paul Mall
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The Official Tee's Are IN!

http://youtu.be/zuNJEFi3AwY

[Smile]

See you all in Boston

Paul

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Cockapoo1996
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Yay! Looking forward to receiving and ironing my tee shirt. Thanks so much Paul!!
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penguingirl
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Robin - that is a great idea for those signs. I will be there with my BF so maybe we can each hold a sign.

I want to make a kick butt sign.

--------------------
 -

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Paul Mall
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Just 27 Days to go.

Make sure you share with all your lyme friends and support groups.

The press release will be avaialble on the 3rd

Paul

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BethHurts
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Love the shirts! I would SO go if I could. I will be just home from my first appointment with Dr. C. then.

Have fun and be heard!

--------------------
Beth
Undiagnosed since 7/2009

Healing is a matter of time, but it is sometimes also a matter of opportunity. ~Hippocrates

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Paul Mall
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Hello Everyone Just a Quick Update!

The protest of the IDSA Lyme Practice Guidelines is in just 17 days in Boston.

If you are in the New England area please print and share the flyer at your Doctors office , Support Group , Library etc.

http://lymekick.com/idsa.pdf

Thank you for everyones support.

See you all in Boston!

Paul

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Paul Mall
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Just 8 Days to go!

See you guys in Boston

Paul

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Robin123
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So how did it go??!!
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lizzysmom
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We had about 80 protesters...and though that doesn't sound like many, we did a good job of being loud and getting noticed.

Several docs stopped and talked with us and there were dozens of conference attendees who were taking our photos and video from the building windows and the lobby area or sidewalk.

I think it was very effective.

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Paul Mall
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Great Day!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/29005

Paul

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Robin123
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LIzzysmom, I think 80 people is a great turnout! Considering what everyone's dealing with healthwise - thx to everyone who went!
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proudtoserve
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it was wonderfull day and I hope we double our numbers next year!

--------------------
PROUD : )

 -
Dx: Lyme & Bart April 2008.
currently on plaquanil, Roxid and Sulfameth.

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oranuf
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i am so sorry we missed this. need to know when the next one is!
Posts: 10 | From NY | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
   

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