posted
We all see and have experienced that the major medical institutions/hospitals in the country have bought into the "overdiagnosed, overtreated" line. Is it true that this is being dictated by the Infectious Disease Society of America? Do they have that much power? I want to understand the politics of this disease more clearly...
Who is behind the brightest experts/doctors on Lyme disease being brought up before medical boards? Who is really driving this anti-Lyme agenda? Are they payoffs by insurance companies? Has this been investigated?
can anyone point me to more research or articles about these issues?
I'm insatiably curious about all of this these days.... especially as I get all articles related to Lyme disease sent to my inbox, and in all these spread out news stories across the country, I am seeing this claim made over and over "overdiagnosed, overtreated"
WHO IS INSTIGATING THIS???? i wish the FBI could devote a group of investigators at the highest levels to unravel this political nightmare... I want these #%$^$^$ people exposed!
Anneke
Posts: 364 | From California | Registered: Sep 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Anneke, it does seem to be the IDSA that is heading up the anti-Lyme charge, but there has to be more to it than that, I suspect.
I wish I had some answers for you.
I am wondering if we Lymies should file a class action lawsuite against te IDSA. I think I may have found the lawfirm to do it. It is still a half-baked idea at this point, but like you, I'm getting a bellyfull of the effects the IDSA - and their buddies the CDC and insurance companies - are having on the Lyme world.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Yale docs are the problem. They are the most trusted by medical community since they were first on the scene in the 70's--rheumatologists.
Unfortunately, it never really moved past rheumatology to be embraced by ID or Neuro's where it rightly belongs.
The yale docs also are patent holders to the failed lymerix vaccine....
They are patent holders to accurate lyme tests that they don't want used....
The same docs are on the IDSA committee writing policy...
The same docs sit on the boards of insurance companies...
All comes together neatly but we need a really great writer like Dan Brown to pull it all together into a blockbuster cause it's got all the makings of an awsome movie.
(Just info I have picked up along the way...)
I would be in for a class action suit....
-------------------- We are spiritual beings on a human journey...
posted
Yes, it is crazy making. I don't know what is at the source of the harm that is being done.
Except that there are sooooooooo many "issues" in the world going on that are begging and demanding attention, of which lyme is only one.
However, after reading the most recent article that came to my google alert box, I was so disappointed and even aghast by what was said..."The debate has led to charges that patients are diagnosing their own disease and shopping around until they find a doctor who agrees with them." Please!!
I have been through quite a lot of questioning my self, even to the point of believing these doctors telling me there is nothing wrong with me and everything is fine then the next day....throwing up, etc.
At least I have come to a point to KNOWING that this is TRUE...chronic lyme disease progresses in stages and is TRUE.
I also know after a year of antibiotics that I am doing better even as I have much further to go.
I will write to OPRAH again soon. As a person who has suffered with this in great loads of horrific waves, as many have (even though this article claims it is a small minority of families who have it and who advocate long term antibiotics)....the truth will come out.
Even as it is not all about the antibiotics, becasue there is much more to healing chronic lyme disease....it is also about the antibiotics and at a long term deal. The question becomes, how long is long enough?
We should not have to struggle so hard and be under the radar and have to pay out of pocket outrageous sums.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I could'nt begin to read alllll that stuff 8man12...WOW!
However this post should be over in another forum...
Please...
I understand why it's here...but it really should'nt be...
that's all.......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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quote:Originally posted by cave76: 8man12, But, trying to be fair , until there are new and better tests........Shrug.
[/i]
I believe we already have a couple of test which are very accurate. Yale has it's 94.4% accurate test and then there's the dark field microscope. http://www.lyme-diagnosis.org.uk/
It really is all about the antibiotics imo. The gov't has a position that borrelia can not be cured with abx. I happen to agree despite the fact that abx saved my life. It's simply not an option for the masses.
I think we've already seen a shifting from post Lyme blah blah to abx resistant chronic lyme...(could be wrong on this).
In any case it appears the gov is opening up on us. Keep in mind that does not mean a change in abx therapy. That's not going to change.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Can you direct me to an explanation of this test? Thanks, Barb
Human said in part: They are patent holders to accurate lyme tests that they don't want used....
Posts: 1875 | From VT | Registered: Oct 2002
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
It also does not help that the LDF and LDA are working somewhat at odds with one another. See my post in activism about the Public Law and my recent research.
Point blank I was told by the LDF that 2 different Lyme groups introduced bills which confused both Lyme patients and the people in Washington who could help us. I was outraged by what I discovered. And I still do not have any answers from the LDF, who posts this PL on their website.
Posts: 2276 | From NC | Registered: Oct 2000
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quote:Originally posted by bpeck: Can you direct me to an explanation of this test?
Two possible explanations as to why this was dropped. While money is usually the driving force, imo this issue is a bit more complex.
Kathleens excellent comments and related PubMed article. We now know that the only validated method to detect Lyme borreliosis- or ANY borreliosis- is through the detection of genera-specific antibodies to flagellin.
Yale validated the following flagellin 1991 method according to FDA rules, and this is the 1) earliest, 2) most accurate (17/18 = 94.4% accurate) and was made 3) specific, per FDA rules for the validation of an analytical method.
It was patented under US patents 5, 616, 533:
1: Infect Immun. 1991 Oct;59(10):3531-5.Click here to read Links
Molecular characterization of the humoral response to the 41-kilodalton flagellar antigen of Borrelia burgdorferi, the Lyme disease agent.
Berland R, Fikrig E, Rahn D, Hardin J, Flavell RA.
Section of Immunobiology, Yale University School of Medicine, New Haven, Connecticut 06510.
The earliest humoral response in patients infected with Borrelia burgdorferi, the agent of Lyme disease, is directed against the spirochete's 41-kDa flagellar antigen. In order to map the epitopes recognized on this antigen, 11 overlapping fragments spanning the flagellin gene were cloned by polymerase chain reaction and inserted into an Escherichia coli expression vector which directed their expression as fusion proteins containing glutathione S-transferase at the N terminus and a flagellin fragment at the C terminus. Affinity-purified fusion proteins were assayed for reactivity on Western blots (immunoblots) with sera from patients with late-stage Lyme disease. The same immunodominant domain was bound by sera from 17 of 18 patients. This domain (comprising amino acids 197 to 241) does not share significant homology with other bacterial flagellins and therefore may be useful in serological testing for Lyme disease.
PMID: 1894359 [PubMed - indexed for MEDLINE]
Posts: 731 | From Humble,TX | Registered: Feb 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Here's another thing:
When the media is going to do an article about Lyme, they usually look in three directions for background information and for factual confirmation:
archived articles (especially in some of the more prominent newspapers and magazines). well-regarded medical agencies like the CDC and medical professionals who re considered experts in a field.
They do this both to get information and to confirm information they may have gotten from a source.
As most of us know, that particular search leads to the same critical/ skeptical articles (with quotes from so-called experts in the Lyme medical field), to the CDC guidelines (which are flat-out erroneous) and to so many doctors who don't take this disease seriously.
Granted, a number of small press newspapers and some local tv stations have been covering "our" side of Lyme -- this horrible, debilitating, underdiagnosed and undertreated disease -- but the truth is that those publications just aren't taken as seriously as others that are bigger and more widely distributed.
So the media is stuck in the cycle of regurgitating so much misinformation and trotting out the same tired tick stories each spring.
I don't see the CDC changing its parameters anytime soon, nor do I imagine complicit doctors backing down from their positions. But I could envision several mainstream news articles fully illuminating both sides of the controversy and the full breadth of the suffering this disease can cause.
In the AIDS fight in the 1980s, it was finally an article in the NY Times that began to move the press in the direction of recognizing the disease and addressing it.
Once that occurs, public perception can start shifting, too.
Just my 2-cents.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Did you see the article that came out yesterday re: a couple of senators trying to pass a bill about conflicts of interests - specifically about how deciding influential members of the CDC were found to have stocks in the Lymerix Vaccine? This was exposed in the article, and the Senators were trying to do something to address it.
Very interesting...
What I still don't get is why isn't this more accurate test developed by Yale actually used?
And, why are drug companies out there trying to fund Lyme/antibiotic research when we could prove to be one of the largest antibiotic using patient groups? If the drug companies were really looking out for their best interests, why aren't they out there trying to fight the "overdiagnosed, overtreated" camps? Do they see it as a losing battle or what?
I hope we keep up this dialogue. I am insatiably hungry to learn more about this, and to aim activist efforts in the right direction
I think that getting an article in the NY Times would be an incredible boon to the Lyme cause. I wish some of us had connections there!!
There was the one article in early summer that came out, but it wasn't that accurate or powerful, and then Wormser the Worm wrote his strong letter to the Editor regurgitating the same crap.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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quote:Originally posted by Anneke: I think that getting an article in the NY Times would be an incredible boon to the Lyme cause. I wish some of us had connections there!!
Anneke
To Anneke and Andie...great stuff. I know of one person other than myself who has been treated as a criminal due to the neurological symptoms of borrelia. What other disease can put you in prison? Now thats a story I'd like to see.
but here's the tricky part...what story would you like to see printed? If borrelia is as pervasive as the evidence suggest and as resistant to abx as the evidence suggest, do we inform them of the true nature of their disease and in the same breath state oh btw it's untreatable?
Tell the truth and cause mayhem or riots as millions attempt to erradicate a bug that is way to clever to ever get beat by abx(for the masses). Or lie and put out propaganda? Either way the government is not giving us abx for this. Just ask Dr. J.
I've been struggling with this question for awhile...I still don't know what I would have done differently.
[ 30. August 2006, 12:29 PM: Message edited by: brentb ]
Posts: 731 | From Humble,TX | Registered: Feb 2005
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posted
Yale's test is NOT 94% accurate. Yale has been lying for years. Remember they're the ones who sold us an Osp A test to qualify an Osp A vaccine that has harmed or will harm anyone who takes it. The next Osp A vaccine will be just as dangerous.
It's all about money power and ego.
Posts: 57 | From the middle of a pandemic | Registered: Sep 2006
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quote:Originally posted by national catastrophe: Yale's test is NOT 94% accurate. Yale has been lying for years.
Care to elaborate? Some think the patented test would prove Lymerix a fraud thus the lack of follow up...
Posts: 731 | From Humble,TX | Registered: Feb 2005
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, until there are new and better tests........Shrug. ![[Frown]](frown.gif)
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