I am wondering if people here believe that after the July 30th IDSA meeting, that the panel members will go agaisnt their own medical society and beliefs, and change the guidelines.
It isn't that I am not grateful to the Cnnt AG, or to those presenting the research supporting our claims, or that I don't think they will do a good job; to the contrary, I think the presenters have excellenct credentials. I also think that regardless of outcome, it is important to present the research to a new panel.
But I have a hard time believing that after being presented with the evidence, that the new guideline panel will have more than 25% of its members vote to change the guidelines in any significant way. I don't see them voting agaisnt the opinion of their own medical society.
After having worked for, or with, universities most of my life, I know that researchers are just as susceptible as everyone else to overlooking the evidence if it doesn't fit their paradigm. Or of sucumbing to fear of reprizal, or fear of being ostracised by their peers.
I know this is cynical, perhaps I am trying to protect myself from disappointment.
What do others think?
Posted by bettyg (Member # 6147) on :
amanda, i'm NOT holding my breath.
on the other side, glass is HALF FULL; let's drink it and give it a FAIR shake.
Posted by Leelee (Member # 19112) on :
Gosh, I sure hope so. But, I honestly don't know. They have had so much power for so long.
I suspect that changes will be made in small increments but that it will take many more years for us to have the guidelines re-written to reflect what most of Lyme-aware people think are reasonable.
Posted by nomoremuscles (Member # 9560) on :
I think somehow we will end up in exactly the same place, only now they will be patting themselves on the back for having been so fair and open-minded. And afterwards, with knowing paternalistic grins, they will hold out to the press and various medical journals and societies that the matter is finally settled, and physicians can rest assured that IDSA left no stone unturned before discovering they had been right all along.
I would like to be wrong.
Posted by seekhelp (Member # 15067) on :
NMM has it exactly right. Posted by sutherngrl (Member # 16270) on :
I think it is going to take a little more time for things to change; but I see so many people getting LD in my state lately, which is supposed to "not have LD". It just seems that if enough people in the entire United States gets sick, that they will have no choice but to acknowledge the problem.
It is such a shame that they have so much power over people suffering. I just know that sooner or later their day will come and the suffering will be turned on them.
Posted by LisaS (Member # 10581) on :
After reading Pamela Weintrub's book, Cure Unknown, I have a little renewed faith again that things will change. It will be slowly over years, but I think there are new up and upcoming scientists that are studying lyme for the right reasons. We jsut need the old lyme ioneers like Steere, out of the way.
Posted by dmc (Member # 5102) on :
I agree with NMM comments too.
I worry if nationalizing healthcare the government policy will be the IDSA guidelines ONLY.
Posted by Aniek (Member # 5374) on :
The IDSA guidelines won't be changed, but I think they are damaged enough to help us.
I'm sure the investigation of the guidelines was a big influence in the CT legislation that recently passed. It also helps when people speak to legislators in their states and on national levels, or even write letters appealing treatment decisions.
Posted by paulieinct (Member # 17514) on :
The new panel is between a rock and a hard place. If they make no changes to the guidelines, they will have ignored compelling evidence of the persistence of live spirochetes after treatment, which is the cause of chronic symptoms. They will also have ignored compelling evidence of the gross inaccuracy of the standard Lyme tests resulting in misdiagnosed and underdiagnosed cases. This scenario will result in numerous lawsuits.
If however, they DO change the guidelines, this will be an admission that the earlier guidelines were flawed because of the conflicts of interest. This also will result in numerous lawsuits for the harm caused to thousands of Lyme sufferers.
Major turmoil no matter which way they go.
Posted by Nicole_Denise (Member # 20620) on :
I agree with Paulie...They'll probably find a way to make just enough change to LOOK legitimate, while still covering their butts.
But still- no matter what the result- this is a step forward. It is brining the issue to the public's attention.
Posted by lou (Member # 81) on :
Do you know the old saying: In the fight against you and the world, bet on the world.
They have already told us there will be no change, and have constituted the panel to produce those results. That being the case, all guidelines should now be questioned, especially those from the IDSA, which is a morally corrupt organization.
Posted by Robin123 (Member # 9197) on :
I think all the publicity about the problems with the guidelines has helped us, and will continue to do so, as people speak up about the medical truths of Lyme and co's.
Posted by losferwrds (Member # 19741) on :
Yes they will change, they are not our enemies they have stone age research to make decisions by and as scientists can only report was has been proven.
The problem is testing and research, being clinically sick is not evidence of a disease.
IMO ILADS is more in the dark ages than the IDSA as far as funding, research, and visibility.
Also despite ISDA recommendations I have zero problem getting ABX till I am blue in the face...
Sure it will take some work to get some IV Rocerpherin covereed by insurance but people get it, there is no conspiracy it just about knowing where to go to get treated.
Sure I wish every doc was an expert but they arn't, gps misdiagnose people every day...they're human, go on web md and see what comes up for your symptoms, that all 90% of the gps do.
Posted by polar blast (Member # 9142) on :
losferwrds that is not an accurate statement! they are your enemy and you might just want to keep them close to you..these thugs have hurt so many people and they are NOT on your side and dont care if you are alive or dead..end of story! it has nothing to do with research or study's. they know what they are doing and they have there motive's. the consipracy is in the getting it covered by insurence! do you feel like a jerk when you go to a doctor and tell them about lyme! well that is the idsa right there! sorry for the direct post but you are not correct. as for the evidence of disease well they are not looking for any disease they are looking for and easy diagnosis to pin on you!
Posted by nomoremuscles (Member # 9560) on :
quote:Originally posted by losferwrds: Yes they will change, they are not our enemies they have stone age research to make decisions by and as scientists can only report was has been proven.
Ummm.... no.
They are the ones who have done this stone-age research, and who hold it up as air tight. They are the ones who have narrowed the definition of Lyme disease, using very circular logic and arguments, so that practically no one who falls into the chronic category can be diagnosed with Lyme. They have done this intentionally by picking and choosing which science they wish to include in the canon, in order to preserve their positions.
Make no mistakes, they ARE your enemy.
Posted by Pinelady (Member # 18524) on :
Can we make plans now to head to Washington if they do not? I would like to plan ahead.
Posted by Tracy9 (Member # 7521) on :
It is inconceivable to think they will admit their guidelines were flawed in any way and that they will willingly make changes, which would open them up to unimaginable liabilities.
It is equally inconceiveable that they will be able to get away with ignoring the tidal wave of information and facts that they are going to be forced to face head on, live, with all the public and media scrutiny.
Round and round it goes, where it stops noboby knows.
Posted by Areneli (Member # 6740) on :
My guess is they will stick to the previous story but will allow some doubts. There is a long way before these criminals are put to justice.
I feel there was a serious error that Blumenthal didn't charge them with criminal offense once it was possible.
Posted by lou (Member # 81) on :
Well, Blumenthal said it was not about the science, and that is true for the AG's office which cannot referee the science. But it has got to be done by someone more honest than the IDSA, and the current panel is unlikely to do it.
The question is: when medical people/societies prostitute science, who will call them on it? I don't see any mechanism for it. We sure can't call on the NIH and CDC, which, in my opinion are at the bottom of the whole thing. If they were not supporting this flawed view of lyme disease, it would not be happening.
So, would a class action court case work? Can the general public be expected to understand science enough to serve on a jury and get it right? To answer my own question, some of the worst lies can be recognized by a high school student, so maybe there is hope that the public could also recognize it, given the facts.
Posted by bettyg (Member # 6147) on :
lou, yes, the class action lawsuit we've all been talking about for years, is looking better and better due to what IS NOT HAPPENING.
we'll have new ammunition july 30 after hearing! Posted by losferwrds (Member # 19741) on :
I don't understand why the conference on the 30th is being held in the ISDAs court. Shouldn't there be a third party arbitrator present?
Why did the CT attorney general back down? I think he really dropped the ball
At first I thought this was about science, facts, bad testing but the more I read, the more corrupt this whole ISDA thing seems. Its almost like they are just trying to sweep lyme under the rug. How do they refute negative western blots going positive after serveral months of abx challenges, why would your body suddenly make antibodies to something that didn't exist based on their initial diagnosis criteria?
If they don't change their tune after the 30th there really needs to be a federal investigation with no compromises or agreements.
I really hope the non-ISDA presenters have some hard science to back themselves up. I still think the stumbling block is the lack of ability to show the spirochete still alive, there needs to be a test that can lead a pathologist to high % areas for tissue samples that contains bugs that can tested with pcr, plain and simple, but not easily accomplished.
Posted by sutherngrl (Member # 16270) on :
bettg, I agree. I think it is going to take a class action lawsuit and that would lead to a decent investigation.
There is enough of us if we ban together to file a lawsuit and I think that is coming soon!
Posted by kam (Member # 3410) on :
Just read sutherngrl's response. hadn't considered this.
It would be worth it. But, also wondering on what grounds the attorney's would have.
Thinking this would be a new one for the law books or not.
And the money involved...whew...look how much it has taken just to help Dr. J with legal fees.
Posted by nellypointis (Member # 1719) on :
Has anybody who thinks "things will change after July 30th" read this latest effort by Wormser?
You will see that they are really going all out to demolish any study showing or even hinting at persistence post abx.
Nelly
Clin Microbiol Rev. 2009 Jul;22(3):387-95.
Antibiotic treatment of animals infected with Borrelia burgdorferi.
Wormser GP, Schwartz I.
Division of Infectious Diseases, Department of Medicine, York Medical College, Munger Pavilion Room 245, Valhalla, NY 10595, USA. [email protected]
Despite resolution of the objective manifestations of Lyme disease after antibiotic treatment, a minority of patients have fatigue, musculoskeletal pain, and/or difficulties with concentration or short-term memory of uncertain etiology; these are called post-Lyme disease symptoms or, in more severe cases, post-Lyme disease syndrome or "chronic Lyme disease." Several recent studies in which Borrelia burgdorferi-infected animals were treated with antibiotic therapy have demonstrated the presence of PCR positivity for B. burgdorferi DNA in the absence of culture positivity. In mice that were treated with antibiotic therapy, residual spirochetes could be taken up by ticks during a blood meal and could be transmitted to SCID mice. These spirochetes are attenuated; their presence is not associated with either inflammation or disease. In this review the methodology and findings of these studies are critically analyzed, and the significance of the results with regard to human Lyme disease is evaluated, with special emphasis on whether these studies provide useful insights into post-Lyme disease syndrome. A serious methodological concern is the failure to consider the pharmacokinetic-pharmacodynamic properties of the antibiotic in choosing the dosage regimen used. We conclude that there is no scientific evidence to support the hypothesis that such spirochetes, should they exist in humans, are the cause of post-Lyme disease syndrome.
Publication Types: Research Support, N.I.H., Extramural
PMID: 19597005 [PubMed - in process]
[ 07-19-2009, 05:20 AM: Message edited by: nellypointis ]
Posted by Vermont_Lymie (Member # 9780) on :
They will change only if forced to. See Nelly's point above.
Posted by Robin123 (Member # 9197) on :
I think successful class actions have occurred for other medical issues. Anyone know the list?
I know about one for asbestosis from exposure at shipyards. I think one for silicon-leaking breast implants. And maybe one about the hazardous health impact from smoking?
Posted by sutherngrl (Member # 16270) on :
To the IDSA......There is no "SCIENTIFIC EVIDENCE to support this hyposthesis..... but WHAT GOES AROUND, COMES AROUND!
Posted by David95928 (Member # 3521) on :
My fantasy is to sneak into one of their big meetings, announce that I just relased 10,000 Northern California ticks, and watch them freak out en masse!
Posted by randibear (Member # 11290) on :
well i'm just concerned that with their crummy guidelines that when obama's plan gets passed, they won't pay for any lyme treatment and we'll be SOL.....
Posted by losferwrds (Member # 19741) on :
You cant do a class action lawsuit against the IDSA, they just publish recommendations based on studies they deem properly done , and they do nothing to force insurance companys or doctors to follow them, you would have to sue the insurance companies and individual doctors that follow IDSA guidelines and prove them wrong, good luck!
My point is mute, if you can't definitively prove you have spirochetes in you, you can't win case closed, its really, really sad, but its true. Until someone comes up with a reliable test we are all nothing but a bunch of hypochondriacs going to quacks.
Like a murder if you can't produce the murder weapon your off the hook, OJ on a grand scale...
Posted by Tracy9 (Member # 7521) on :
Have some hope, the ILADS presentations totally rock.
Filled with science, which is more than we can say for the IDSA studies.....we have reason to have hope.
We have great scientists with excellent presentations. We are in the best shape we can possibly be in.
Posted by losferwrds (Member # 19741) on :
quote:Originally posted by Tracy9: Have some hope, the ILADS presentations totally rock.
Filled with science, which is more than we can say for the IDSA studies.....we have reason to have hope.
We have great scientists with excellent presentations. We are in the best shape we can possibly be in.
Unfortunately on the 30th the IDSA has home field advantage with no 3rd party arbitrator. The CT AG should have insisted on an independent review, its like asking a accused murderer to hear theories about their case and decide if they are guilty, its more of joke than the existing testing protocols...
Posted by losferwrds (Member # 19741) on :
quote:Originally posted by Tracy9: Have some hope, the ILADS presentations totally rock.
Filled with science, which is more than we can say for the IDSA studies.....we have reason to have hope.
We have great scientists with excellent presentations. We are in the best shape we can possibly be in.
Unfortunately on the 30th the IDSA has home field advantage with no 3rd party arbitrator. The CT AG should have insisted on an independent review, its like asking a accused murderer to hear theories about their case and decide if they are guilty, its more of joke than the existing testing protocols...
Posted by seekhelp (Member # 15067) on :
Well said losfrwrds...it's sad. I truly don't believe the ISDA cares to hear new evidence and obviously already has their opinions.
I read the NEJM article titled 'A Critical Appraisal of Chronic Lyme' again. They almost convinced me when I read how they tore apart ILADS studies and said their labs couldn't find any evidence of Bb anywhere. It is tough to dispute.
Posted by j_liz (Member # 20496) on :
I read this is going to be online. Where?
liz
Posted by Tincup (Member # 5829) on :
You can listen (live) to the hearing. And/or you can check the blog below (comment section) and CALDA's discussion board.
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