posted
I've been hearing frequent radio ads from the American Neurological Association claiming that long term use of antibiotics is unnecessary for Lyme treatment. I don't believe it and doubt if Lyme specialists do, either. Anyone heard of plans to counter this misinformation?
posted
I haven't heard such crap. Sounds like propaganda to me.
I'll even come back and say that in a few months when I've been on abx for more than a month. I've been on them for a little over a month with very little progress.
Just keep plugging away with our message. It'll get out there eventually!
Posts: 97 | From Clinton, CT | Registered: Jun 2007
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
They just totally **** me off! What station is doing this??
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Yes, please tell us what state and what radio station, so lyme community leaders in that area can discuss the inappropriateness of this type of mis-information dissemination with their business manager.
The radio station people need to know the truth.
N/
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Why are they so interested in Lyme disease patients and their treatment. Is it because so many of their patients might actually have Lyme disease? Otherwise, why would they care?
Posts: 984 | From San Diego | Registered: Nov 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I've heard it on more than one station, but the one I can absolutely identify is KAMO FM 94.3 out of Rogers, Arkansas. It is owned by Cumulus Broadcasting. Usually I'm driving when I hear it, but if I get a chance, I'll write down the websites that are referenced in the ad. It is presented as a public service announcement and in summary says that new studies show that short courses of antibiotics are suffient to treat new cases of Lyme and that longer courses are dangerous. I assumed this was a nationwide ad campaign. I hope I'm wrong.
posted
If the medscape link asks for a login, Google "new guidelines issued for nervous system lyme disease."
Posts: 75 | Registered: Aug 2005
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posted
Would be nice if ILADS could come up with a simple PSA stating longterm meds are usually needed to treat Lyme/co-infections, and get that one out to the radio stations.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by JimMet: It is presented as a public service announcement and in summary says that new studies show that short courses of antibiotics are suffient to treat new cases of Lyme and that longer courses are dangerous.
Public Service Announcement??!! I thought those were FREE. I hope to goodness that the station isn't providing free air time to the ANA!!
If so, we can demand equal air time!
That really SUCKS! I guess we have the neuros and ID ducks running scared!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Pure Evil and Greed -
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
OK, so besides the "shell game", I thought of another reason they actually have to spend money to present their "Pea".
Ta da...they cant find anyone to hold rallies or write of suffering, continuing illness, insult and medical abandonment due to ILADS. So they use greenbacks to garner public name recognition. Definetely does not have the same "punch" and actually may backfire, because it draws attention to the weakness of their guidelines.
N/
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
I just listened to the public service announcement and I just CANT believe it. It's sickening. So many people will be harmed by that. I bet it's aimed at non-LLMDs.
When is this going to end?
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
Everyone who hears this on a local radio station should complain to the station management, if they can figure out who that is nowadays when one big corporation owns a whole bunch of stations. Sounds to me like the big media conglomerates are being used to further the aims of the big insurance corporations.
I would call this scientific malpractice. Can someone tape this so we have it as evidence when the happy day comes and we can sue the pants off these crooks. Speaking now of Wormser and his buddies, wherever they appear in some official medical society, using it as a tool.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Why Arkansas? Has anyone else heard these in any other states?
Posts: 204 | From ma | Registered: May 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Do you all know what this means? It means that Lyme patients and ILADS are making a difference!
Why else would the ads be running? Would they run if nobody used long term abx? If patients weren't demanding adequate treatment?
In any fight for justice, things get worse before they get better. Those in power will do anything in order to stay in power when they begin to lose their grip.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Jim - Does Arkansas require insurance companies to pay for long-term lyme treatment (like Rhode Island)? Just thinking the ads might be a way to discourage people from seeking treatment that would have to be covered.
[ 02. August 2007, 04:00 PM: Message edited by: bystander ]
Posts: 204 | From ma | Registered: May 2007
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I don't know the answer to your question about Arkansas insurance companies. I'm an Optometric Physician and wrote antibiotic prescriptions for myself until I was (for the most part) symptom free. I have insurance under my wife's employment and paid only our deductible for the meds during the eleven months I took them for my Lyme. I didn't have any trouble with the insurance company.
I'm relieved to hear that these radio ads haven't been playing elsewhere. They are still playing several times a day here and have been for at least a month.
I have diagnosed Lyme in several of my patients and sent them to a LLD in Springfield, MO for treatment. These ads may make his treating them properly more difficult. Certainly, if I were a new Lyme victim, I'd tend to mistrust any doctor who suggested long term treatment after I had heard the ad.
Posts: 75 | Registered: Aug 2005
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bettyg
Unregistered
posted
from 1 of our very active lymenet members sent to me today and i forwarded it along....
The following link takes you to the press releases that the Academy of Neurology is putting out endorsing the IDSA guidelines. You'll note that some of the same board members at the Neurology Academy sit on the IDSA board ! Their transparency and desperation is laughable.
The Neurology Academy has been sold a bill of goods by these lunatics. Never would I have deemed it possible that a group of medical people would work so vigorously and with such malice against a group of desperately ill people. But, here it is. No doubt, this is a response to the CT. AG investigation.
I've posted below contact info for the PR person at the Neurology Academy.
In my personal letter to them I'll be mentioning the CT. AG investigation, the fact that NIH funded studies found long-term abx are effective.
They state in their press release that "all" scientific evidence points to short-term efficacy and long-term ineffectiveness. The NIH's two studies prove otherwise. These are outright lies.
I'll also be mentioning that the Neurological Academy may be opening themselves up to litigation with such false claims, especially people that adhere to them and are inappropriately treated. Read on and act.
CONTACT INFO FOR THE AMERICAN ACADEMY OF NEUROLOGY ************************************************
Angela Babb - Media & Public Relations Program Manager [email protected] (651) 695-2789
American Academy of Neurology 1080 Montreal Avenue - Saint Paul, MN 55116 Tel: (800) 879-1960 or (651) 695-2717 Fax: (651) 695-2791 Email: [email protected]
start emailing again folks; this member has provided all the info necessary for this huge injustice!
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posted
So what about getting out our ad for longterm abx? Something ILADS could do?
"Contrary to radio ads you may have heard by the American Neurology Association, Lyme-treating doctors and patients have found benefit in the use of longterm antibiotics." Etc.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I just got off the phone with the program director responsible for running these ads. I explained to him that the issue was still being debated and not yet resolved. I also cited the August 6 issue of Newsweek. He seemed very receptive and said that he would "look into it." He also mentioned that he had heard Daryl Hall interviewed recently and that he now understood how difficult diagnosis could be. I think he'll pull the ads.
quote:Originally posted by JimMet: I think he'll pull the ads.
Jim
GREAT JOB, JIM!!!! Keep us posted!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
JIM, thanks for taking the initiative to get down to nitty gritty by contacting this individual, being civil, pointing out the facts, etc., and Daryl Oates recent interview has helped tremendously too.
posted
I think the ads have been pulled. I listened to the station several hours this weekend and heard none. Before calling the program manager, I used to hear one every couple of hours.
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you rock jim! 
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