posted
When we were talking with senior people at Medicare today, we learned something most interesting.
According to their information, the AMA approves of long term antibiotic therapy for lyme disease and the CDC does not. Medicare goes along with the CDC....so far.
We plan to send them the transcript of the presentation by ILADS to the CDC as well as any other documentation we can find. If any of you want to send me links for them, please do.
I am terribly brain fogged, but trying to gather this all together for Medicare. Who knows, maybe we can change some standards there.
They were certainly impressed by my marked improvement, twice with antibiotic therapy....and both times for other illnesses. So we sort of stumbled into this successful treatment.
We decided to buy it ourselves this time and the pharmacy gave us a nice discount. With all the business we give them, they should! The guy at Medicare felt sure we could win our case and be refunded.....will keep you posted.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
The AMA represents the general opinion of the mainstream doctors. The CDC guidelines for LD were, I believe, drawn up by researchers, not practicing physicians. That is why they were sued by the attorney general of Connecticut and new guidelines are in the works.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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- To be clear, you mentioned that the "AMA approves of long term antibiotic therapy" - I've not seen that so am not familiar with any document or ruling. Groups linked below will know more.
However, their definition of "long term" is not the same as ILADS' definition and they still use IDSA criteria for diagnosis, so that nearly no one is ever diagnosed.
The AMA is fused at the hip with IDSA.
Glad to hear you are hoping to make a difference. I just don't want you to be clobbered over the head.
When you say "we met with . . . " Who is "we"? You and your family?
Who exactly are "senior people at Medicare" - Management? If so, just how high?
" . . . The guy at Medicare felt sure we could win our case and be refunded . . . " Is that guy truly literate regarding the IDSA and ILADS' controversy?
My guess is he was assuming this was a simple matter. And he'll probably get in a lot of trouble for saying what he did, maybe even fired.
Last I checked Medicare only covered - for IV - 28 days' treatment for lyme. That is not long-term, at all.
Of course, there may be ways to work around or though this and most oral prescriptions are not so obvious and usually go through for most.
Be aware that this could make things worse as it's flagged your family. It takes a tremendous force to change medicare. Literally, an act of congress.
You can send the transcript for the ILADS conference but it's not going to matter. They know. They deny. It's what they do. they are a big part of the problem. They want it this way.
The controversy between IDSA and ILADS is very complex and most insurance companies are behind the IDSA with tornado force, tossing lyme patients out with full speed.
I truly don't want to discourage you but if you want to see what's been done, who's been contacted and their reply you could contact the LDA, Lyme Disease Association.
They would LOVE to have your energy and enthusiasm.
There are some other organized activist groups who can tell you more about their experiences with CDC, NIH, AMA, etc. It's been harrowing but they would know if there might be a door more likely to open if anyone would.
I'm just not sure of the groups who have been working on this sort of thing:
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