Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Hi,
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?
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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bettyg
Unregistered
posted
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.
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
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.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
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.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
NMM has it exactly right. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
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.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I agree with NMM comments too.
I worry if nationalizing healthcare the government policy will be the IDSA guidelines ONLY.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
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.
-------------------- 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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posted
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.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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losferwrds
Unregistered
posted
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.
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posted
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!
Posts: 593 | From long island ny | Registered: Apr 2006
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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.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Can we make plans now to head to Washington if they do not? I would like to plan ahead.
-------------------- 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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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
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.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
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!
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losferwrds
Unregistered
posted
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.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
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 ]
Posts: 416 | From france | Registered: Oct 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
They will change only if forced to. See Nelly's point above.
Posts: 2557 | From home | Registered: Aug 2006
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posted
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?
Posts: 13116 | From San Francisco | Registered: May 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
To the IDSA......There is no "SCIENTIFIC EVIDENCE to support this hyposthesis..... but WHAT GOES AROUND, COMES AROUND!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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!
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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losferwrds
Unregistered
posted
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...
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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losferwrds
Unregistered
posted
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...
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losferwrds
Unregistered
posted
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...
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I really wish CALDA would fix their webpage so much!!! It's not compatible with IE. It drives me crazy. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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