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!
Posted by Robin123 (Member # 9197) on :
I've heard that too, that some of them are questioning. It would be great if you could reach some of them.
Posted by Robin123 (Member # 9197) on :
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!
Posted by Neil M Martin (Member # 2357) on :
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.
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?
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?
So how did it go??!!
Posted by lizzysmom (Member # 26010) on :
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.
Posted by Paul Mall (Member # 27581) on :
LIzzysmom, I think 80 people is a great turnout! Considering what everyone's dealing with healthwise - thx to everyone who went!
Posted by proudtoserve (Member # 14811) on :
it was wonderfull day and I hope we double our numbers next year!
Posted by oranuf (Member # 32363) on :
i am so sorry we missed this. need to know when the next one is!
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