And Dilly we are 100% agreement on the IDSA, a useless organization. I'm more interested in what we learn from the science. Hopefully the IOM will start targeting on what we do about these tick borne infections.
As far as around end, we combine our forces to support some of these researchers. I've always felt funding activism only gets you so far. Why not fund a few researchers as a community or work on the granting commisions within NIH to get funding to go in our direction. Maybe the IOM is a start, it certainly generated a lot of dialogue between researchers and clinicians.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Well, my question is why an ehrlichia researcher is considered enough of an expert to be a guideline author for lyme disease? These people need to stick with their area of expertise, because that is what they know. And some who claim to be experts in lyme definitely are not.
Does anyone really think we could ever find common ground with Wormser? He has what he wants. And NIH has been at the root of the problem in my opinion. The idea that we could somehow influence how they give grants is rather naive. They have even resisted political influence, claiming to be sacrosanct because they are scientists, and doctors. Just another group that wants taxpayer money without any guidance or oversight. Our only hope in my opinion is for more honest people to somehow get into top positions in the medical bureaucracies. And for people who have the resources to privately support research for us.
Posts: 8430 | From Not available | Registered: Oct 2000
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Bob-
We've already worked, on multiple fronts, on having real TBD research performed.
For example, Columbia's TBD research center in NYC would never have come into being without the tireless work and energy and commitment and savvy of a few handfuls of Lyme patients-advocates.
I was there at its opening ceremony, and I heard the personal thank-you's its directors offered to some of those advocates.
Go be glad about what research potential you see. We all need to find hope wherever we may, and I don't begrudge you your sources.
Just don't be surprised if not all of us are willing to jump on the same bandwagon, especially when from our perspective it is being driven off the road by folks who never intended to deliver any of us anywhere but to the poor house or the funny farm.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Dilly --> I sure don't blame you for not jumping on any bandwagon. I couldn't even tell you what bandwagon even looks like. So I have nothing to propose. If there is potential in something, I'll sure share it and let it be reviewed.
I do agree fighting the IDSA is useless. And we desperately need better information from researchers. And they desperately need better support.
I'll go by a simple maxim. No problem is ever solved if there isn't an honest attempt at finding a solution. That maxim was never associated with the IDSA, just look at the studies and research done. My point is there will never be solution without honest research.
My question, how do we get honest research into the problem?
Organization not to trust: The AMA who probably are the real issue behind the IDSA. As well as insurance companies who want to avoid getting into expensive claims as the did with AIDS. And big pharma who essentially funds the AMA. They all set what policy and what research is to be performed. It is all being set by a financial agenda and not a public one. We can't change that!
So what can we do next beyond Columbia? How can we take the next step? Of all the people who might have the best clue, might be Pam Weintraub who might have a clue at what else can be done. Especially after the IOM, why don't we ask.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
CALDA is currently helping to fund five research projects, and there will be more. There are several individual doctors and research teams working on projects. I agree - this is what needs to happen, in order to target these illnesses appropriately.
Also, I like to follow the research on prevention. The last I heard, they were experimenting with high-pressure spraying of Alaskan cedar nootkatone and carvacrol, both plant compounds, and the report was 42 days of no ticks seen on the ground.
We have a global ground cover problem. Research to help make the terrain safer is important to do too.
Posts: 13171 | From San Francisco | Registered: May 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Onbam -- I think the best way to inform others of our infectious nature is to create necklasses of garlic so people can see and smell us coming. Lime green garlic would be best.
The best way to test it is using human infected tears on mice. My guess, someone would have to sponsor the research, unless someone could twist wormsers arm to it. I wouldn't twist to hard, he looks pretty fragile. I saw him at the OEM and he sure doesn't look healthy, just my opinion, he walks like he has gout. Very pasty white skin like it has seen sunlight in years.
You know the old saying what goes around...
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Bob, I used to inform people of my infectious nature with tiger balm on my neck - only that didn't go over too well, so I stopped informing them...
onbam, unfortunately the Lyme bacteria has been shown to be in all fluids and tissues. sigh.
Posts: 13171 | From San Francisco | Registered: May 2006
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I guess your right Robin, some just like to stick there heads in the ground and ignore you anyways.
We saw that during the oem, after abx treatments you could still see the organisms in 3d no less still active in tissue.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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