posted
Remember, it's earthday - who do we work for, them or us? - redouble your commitment to the earth and all life upon it - well, most life...we'll make some exceptions...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
It hasn't quite hit me yet. I'm not surprised, but I had a back-burner hope that
the delay in issuing the report
meant that there were some honest and scientifically competent people on the panel
who might actually buck peer pressure.
The pressure must have been intense -
if they had voted to change the guidelines, there would have been a
flood of lawsuits, a
flood of defensive counterargument to the effect that the panel bowed to political pressure from "elected politicians" and greedy Lyme doctors who prey on the ignorant, etc.
I wonder if the panelists who initially resisted will
remember what they did,
or if they will repress the memory and believe that they did an honest review of the evidence.
Nothing has changed for us -
we just have to keep educating people one at a time, as the disease continues to spread.
Incidentally, I found out that Allen Steere's father was an
attorney for a life insurance company, and
an active lobbyist in the Indiana state legislature.
Also an Eagle scout. He was still alive at 101,
a few years ago when the article was written.
Lorima
Posts: 74 | From MA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
LDA is putting out a statement and an Action Alert tonight.... fairly soon.
posted
Mary - agonize...... ----> organize
Posts: 13116 | From San Francisco | Registered: May 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Does it not bother anyone that "activism" on lymenet is frequented so little? Everyone is is in "medical": Help me, help me, help me......
But how many go to activism?..
This is infuriating. We are all obligated to act....aren't we?
How to get the sleeping masses to rise up?
Even my family won't raise a finger to do anything. My dad even asks me why I can't get treatment....after all these years and all these explanations!!!!!! I gave him the book, "Cure Unknown," but he won't read it. Never.
I would NEVER sit idly by while my child's life is taken away. I can't stand it anymore. All this apathy.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Short-cut: check out the ALDF's position on the long-term use of antibiotics.
Keep your eye on where the ALDF is popping up nowadays. Hint- here in Maryland would be a start.
---------------
Board of Directors
Gary P. Wormser, M.D.
Chief of Infectious Disease
New York Medical College
Durland Fish, Ph.D.
Professor
Dept. of Epidemiology & Public Health
Yale University School of Medicine
Eugene D. Shapiro, M.D.
Professor of Pediatrics and Epidemiology
Yale University School of Medicine
Peter Krause, M.D.
Professor of Pediatrics
University of Connecticut School of Medicine
Thomas P. Farrell
Managing Director
AML Consultants
New York, NY
Red Pfohl
Institutional Sales
OTA LLC / Off the Record Research LLC
Purchase, NY
Robert A. Proctor III
Managing Partner
Oak Hill Consultants LLC
Bedford Corners, NY
Marcia C. Saunders
Managing Director
Citigroup
New York, NY
ALDF's "scientific" "advisers" include...:
-- Alan G. Barbour, M.D.
-- Allen Steere, M.D.
--Robert Lane, Ph.D.
and.. Durland Fish, Ph.D. (yep, he advises himself. best way to make sure opposing viewpoints (and science) don't sneak in, I guess)
Borrowed from an honorable Lyme Advocate.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. Pinelady. This just got me more upset. I shouldn't put in print what I would really like to do, how far people can be pushed...you know.
I would love to go over in medical and tell people to stop whining and DO something. I'm so angry.....
I also whine, it's true, but I also DO!
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
The arrogance of this bunch in being so completely dismissive of of an epidemic that is growing exponentially and that causes so much human suffering and even death, is downright evil. I know evil when I see it, and this is it.
Clearly, the focus of this panel was self-preservation of the IDSA name and reputation, and the hordes of sick and suffering be damned. The ombudsman in this case should have excluded anyone with present or past ties to IDSA to eliminate pro-IDSA bias. Instead, only adherents to ILADS protocols were excluded.
This is a millions times worse than the Tuskegee experiment based on the number of lives ruined. At least in the Tuskegee experiment there was ostensibly a valid purpose: to study the devastating effects of an untreated disease - even though the methodology was unquestionably unethical. In this case, pride, arrogance, and greed are the motivating factors in allowing an epidemic to grow exponentially, and denying its victims effective treatment.
The magnitude of suffering will, of course, ultimately make plain for all to see that the IDSA's position was dead wrong and self-serving. Whether this will happen in a year, or twenty years, who knows. The truth will eventually come out. Until then, millions will suffer, some will go bankrupt, some will commit suicide, others will die an agonizing death; their abandonment by mainstream medicine all due to this corrupt organization IDSA.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I was going to be optimistic and wait till I read the results of that panel...
Can anyone email me a copy or something?
Thanks, 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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Tony Z....
Good to see you online!
If you email me, I will send the original to you. It is a PFD thingy and I don't have a link.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I just read over the proposed guideline corrections "suggested"by the new panel...
If the IDSA acts positively towards the suggestions I think these let the old buggers(pardon the pun)off the hook....and they save some professional pride....
However....bad it looks....I think this was as good a job as could be expected from the panel this time around.
I know I have to choke this down...but sometimes one has to take una la volta (one at a time), changes that is....
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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey zzzzzzzzz...
You are feeling better... you have smart and wonderful kids and grandkids (even some you can beat on the golf course).. and are liking where you moved to recently.
Can't beat that! Congratulations!
So good to hear it. You deserve good things. Hope all goes well for you and yours!
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I wish I could say I'm 100% however I think I qualify for the (have gotten rid of most symptoms...BUT...)lingering Babs symptoms seem to be keeping me running for abx....
I really think I've gotten rid of or knocked down the Bb to a personal immuno system managebility.
I fall into those cracks the IDSA have agreed to lighten up on in their next guidelines from a
"missnomer"
to something other than "due to insufficient studies" or some kinda quote like that....
Anyway, I've not been given the atovoquone(spl)azithromycin treatments suggested for Babs.
SX's of menengitis(stiff and painfull neck on left side persists{which I guess could also just be the Bb}but have tested positive for HGE,HGV,HPV type of stuff in me...surprisingly not Babs...but that might not have been requested in the original test request number I used while still working for Labcorp!??
I would'nt mind getting to one of the clinics in RI for (excuse the expression, because I truly HATE calling it "POST LYME SYNDROME0-there's nothing POST or SYNDROME about it) "Chronic Lyme Disease"
I've been requesting and been refused time and time again a spect or pet scan....just to see what's happening up there....
I only have what I have-information gleaned from (lab results of bloodwork in the past) due to the panels I requested from a doc a long time ago when I was still working for those folks at LCorp.
Anyway....
At least whenever I hit (whatever)with IM Penicillin"G" and metro or another oral abx like doxy....I can expect to have a good six months or so....
Too bad I can't afford diflucan....well....perhaps now that I'm not in the prescription-GAP-so far this year....I might be able to squeeze some out of my ppo...
due to the fungi forest I have growing under my toenails!....YIKES! Sorry... TMI?
Well....y'all know me by now!
CUL zman PS the stiff neck (menengeal symptom of either Ehrlichiosis or Babs)returns signaling to me to get back on an IV OR IM>something I deem as "SERIOUS ABX REGIMEN". So far has worked every time...and since I incorporated the IM Penicillin "G" bicillin in my but for the last week....today will be IM INJECTION THREE...the stiff neck is subsiding....again!
Just WHAT DO THEY MEAN antibiotics don't help we "Misnomered-Post Lyme Syndrome" patients are'nt benefitted by "Open ended regimens of antibiotics"??? I ALWAYS AM!
THANK GOD! COME AND TEST ME YOU LOUSEY IDIOTS!
A DARE I'VE OFFERED TO THEM COUNTLESS TIMES YET THEY HAVE'NT TAKEN ME UP ON IT, AS YET!
Affectionately Yours, zman
[ 05-10-2010, 02:01 PM: 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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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Gee...
And I thought I was through with the Bi-Polar symptoms.....LOL!
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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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
How many years on antibiotics does it take to heal?
Been over ten years taking antibiotics that deal with lyme disease and co-infections, watching diet, remaining stress-free and still having neurological problems. What now? I believed in everything you've told me, and still having probllems.
NOW WHAT LYMENET?
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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posted
Hi folks, Please check out Tinup's post on what we do now. Please get to as many people in Connecticut as you can to get them to sign the petition to their Attorney General.
If you're in CT or in a neighboring state, print out a paper petition and just go to a shopping center in CT with the petition. When we canvassed with the petition in CT almost everyone we asked signed. Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
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