lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hello Everybody,
Does anyone have any specific medical questions they would like me to ask anyone at the
conference down here in St Pete Florida on the 19th of January?
Please be nice now! I don't want to get thrown out of the place.
Caveeey!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Just an idea, I'd ask Nancy Klimas about patient selection for CFIDS research. How are Lyme cases identified and excluded from studies, and is it consistent from study to study? Do they screen for clinical history or just rely on blood tests? Do some or all studies consider 'post-Lyme' to be a variant of CFS, meaning they take subjects who've been treated for Lyme and never got well?
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Cavey,,, I went to sleep last night....well come to think of it I never really went to SLEEP sleep....
Anyway...thinking of that exact phrase...of pots and kettles and colors.....LOL
ldfighter has given us the correct website to check for keynote speakers and such.
ldfighter: Are you referring to Sammi Shore? If so, I don't know if he'll be in attendence but he's not one of the keynote speakers.
Looks like just Nancy Klimas MD principal investigator of one of the 3 NIH sponsored CFS research Centers and President IACFS.
Will be the only speaker on CFS.
I doubt whether Nancy will readily give up the floor and admit that CFS is actually a symptom of TBD's.
The website you have given on Dr Sam Shore....makes my point. Even though research
would tend to lean heavily toward recognition of CFS as being just one of the many TBD symptoms.
Given that there is no known cause for CFS,(I would like to add other demyelinated remitting
and exacerbating diseases and ALS, Fibromyalgia,etc., to this list of unknown
etiology and specific therapy)seems to scare the be-jeezus out of Shore.
Anything but "lyme","my Gawd"! Seems to eminate from any researchers mouths.... seems there's a
scientific stigma against TBD's or a disease seniority like hierarchy among scientists.
I doubt if the esteemed Ms Klimas will admit to what you're asking.
Besides, I need like one or two liners...no really "involved political" questions.
I'm not even sure they'll ask if there are any questions.
I just thought I would post this and when I and another lymenetter(so far) get to the
conference, we MIGHT get a chance to ask some of these speakers.
Besides....ldfighter, your use of "post lyme" in your query....gives me the creeps!
(I was'nt born nor did I start researching lyme yesterday ya know )!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I get what you're saying zman. I didn't mean it as a political thing to try to get Klimas to admit what we'd all like to hear, just curious about how study subjects are picked and weeded out. I read on a CFS site somewhere that "post-Lyme" could be considered a type of CFS, so I wondered if they used that approach when designing studies or if they kept out anyone with a history of Lyme.
Why?... because if we know which studies are filled with Lyme patients, we might learn more about Lyme!
I think CFS research is great that respect. They've got the money to study things like immune changes and dysautonomia. It was CFS researchers who first made the connection between NMH and fatigue, which a few years later made it into Dr. B's guidelines - so in a way I think they might be ahead of the curve on what is happening to us physically (since they've got the research dollars) as far as what this bacteria can do to the body.... whether they realize what they're studying or not.
It's a weird thought, I'm not happy with the resistance of CFS researchers either. Hopefully there will be some good dialogue anyway.
(and sorry if I creeped you out zman - didn't mean to imply you didn't know your stuff-?? when I wrote the question I was imagining talking to Dr. Klimas.)
[ 10. January 2008, 03:03 PM: Message edited by: ldfighter ]
Posts: 621 | From US | Registered: Jun 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Oh Gotcha there ldf...
I feel the same way there Cave...too much talk and not enough action....
Heck I even saw an article that was from the steere camp somewhere that finally admitted to a longer than one day or two week or one or two months...
"and in extreme cases....six months to a year of antibiotic treatment is necessary"
You probably saw it.....so don't ask where I saw it....
I REALLY BELIEVE that the lid is going to blow off this thing.....
THIS YEAR!
Yeah, I'll try and start the ball rolling with....
"OK, Where does a sick person go to get treated when all they hear from mainstream medical doctors everywhere""is......
here, take these anti-depressants because we don't know of anything else to do for the residual effects of post lyme syndrome"
zman P.S.>I know what's going to happen though.....
You're all gonna see me on national news yelling!
DON'T TASE ME!,,,,,,,,,DON'T TASE ME!
LOL
[ 13. January 2008, 10:33 AM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
got it
Posts: 468 | From IL | Registered: Oct 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Glad you got it BJG....
Anyone else out there have questions!?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
up
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
up
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Come on now folks????
NO Questions???
I mean really?
Don't ya want to know how amalgams mess with us?
How bout EMF's and Satalite Broadcasts raining down on all our lymie heads???
what? What did I say?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
How about asking whether there are similarities between post-tuberculosis syndrome, post-syphillis syndrome, post-leprosy syndome, and post-lyme syndrome?
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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