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» LymeNet Flash » Questions and Discussion » Medical Questions » lyme research

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Author Topic: lyme research
lymie_in_md
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I believe! We as a community could do our own research, but we've been doing it to some extent. How are we doing it, by self experimenting on what works and doesn't work and communicating it on this site.


And we do on this site all the time, between herbals, diet, rife, photons, energetic testing, homeopathy, detoxification and mind over matter (I'll call it MOM -- [lol] ).


We research all the time, we study ourselves all the time. It might just be, that we have to get better at it.


One thought! Many more scientists will get lyme and we we'll have our own researchers. And, they will have self interest to help us. We just have to organize.


The LLMDs learn from us all the time. We could help that process through better communication.


So my question: is how do we best do research ? Have the government do it (does anyone trust that) or find a way to do it better ourselves. And have more of a role.


Who cares about getting better ?

--------------------
Bob

Posts: 2148 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
rzh1
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I think that is what Lorraine Johnson does:

http://www.pcori.org/people/lorraine-johnson-jd-mba

Posts: 41 | From usa | Registered: Nov 2012  |  IP: Logged | Report this post to a Moderator
Robin123
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It's also the money it takes to do it, with trials including placebos.

I don't know whether research would matter, since we all respond differently anyway to remedies? Just thinking outloud about the issue...

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Lymetoo
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No way I'd trust the government to do it. They would just waste the money and nothing would come of it.

Wish the CDC would follow current research by Eva Sapi, McDonald, etc.

--------------------
--Lymetutu--
Opinions, not medical advice!

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seibertneurolyme
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The biggest problem as I see it - if you read the medical journals then coinfections are rare. If you exclude Dr B articles - the vet - there are almost no journal articles discussing patients with more than one tickborne infection.

Then the next problem is that there are no journal articles - other than with babesia - that discuss treating tickborne infections with drug combos or drug cocktails.

There are many drugs that may not be curative in and of themselves, but they may be potentially curative due to synergistic effect in combo with other meds.

And if you read the journal articles it is not just lyme that is only presented as an acute infection. The infectious disease docs do not believe that there is such a thing as chronic ehrlichia or chronic rocky mountain spotted fever etc etc.

And of course there is the big issue of bartonella - infectious disease docs do not believe it is a tickborne infection.

I agree that forums such as LymeNet are critical for patients and the real LLMD's who are treating patients. But the big question is how to get the results into the medical journals so that tickborne diseases lose their political stigma?

I think one of the most important issues is better testing. Until there are tests which can prove the presence or absence of an infection all the patient experiences in the world will continue to fall on deaf ears.

Bea Seibert

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lymie_in_md
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thanks for the link rhz1 its really good to know.


22 -- not exactly happy how my tax are being spent either


Bea is there a way around medical journals. Doesn't the web offer new avenues ?


Robin let me think about a bit more, maybe we all can. Remember this would have to be done at home. Some things we can do at home is body temperature and variation. Heart rate variability is becoming affordable. Blood pressure, ph. The question: whats available at home for self testing and publishing ? what can we standardize on ?


We may not have everything, but we have things to use and try ...


One thing which might be good is a bio-feedback device which could be shared, some are getting much cheaper. Just a little ingenuity to the problem might get us somewhere.

--------------------
Bob

Posts: 2148 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
   

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