-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Doctors to reassess antibiotics for 'chronic Lyme' disease By DAVE COLLINS 05.03.08, 12:13 AM ET
HARTFORD, Conn. - Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines, which say there's no evidence long-term antibiotics can cure "chronic Lyme" disease - or even that such a condition exists.
The agreement settles an unprecedented antitrust investigation by Connecticut's attorney general over the matter. The doctors group makes clear that current guidance for treating Lyme disease remains in place.
But that didn't stop claims of success by the attorney general and people who believe they suffer long-term effects of the tick-borne disease.
"It's a great victory for patients," said Pat Smith, president of the Lyme Disease Association, a national nonprofit group based in New Jersey. "It's time that Lyme patients got the respect they deserve."
The agreement, announced Thursday, calls for the doctors group to form a new panel of experts to review standards for treating Lyme disease. The Infectious Diseases Society says it agreed to the deal in part because the panel must be made up of doctors and scientists.
Lyme disease can be hard to diagnose with its vague, flu-like symptoms; the most obvious sign is its trademark round red rash. Usually, it's easily cured with a few weeks of antibiotics. Those not promptly treated can develop arthritis, meningitis and other serious illnesses.
About 20,000 new cases of Lyme disease are reported every year, but experts believe the annual total may be five times higher.
Connecticut leads the nation in reported cases and has been a battleground in the national debate over treatment. Lyme disease is named after the Connecticut town of Lyme, where the illness was first discovered in 1975. And the state is home to a number of people who claim they suffer long-term problems from Lyme disease - problems that many doctors are unable to confirm or treat.
The Infectious Diseases Society says it's never been proven whether these patients still have Lyme disease or something else. The group continues to defend its standards, which say short-term antibiotics are effective for nearly all patients. Long-term antibiotics are unproven and potentially dangerous, because overuse of the drugs can lead to drug-resistant infections, the society says.
"We are confident that our guidelines for the diagnosis and treatment of Lyme disease represent the best advice that medicine currently has to offer ... and we look forward to the opportunity to put to rest any questions about them," said Dr. Donald Poretz, the society's president.
The society will consider a variety of scientific evidence and determine whether the 2006 guidelines are justified or need revision.
The guidelines are important because they discourage adequate treatment, advocates of chronic Lyme sufferers say. Perhaps just as significant is that insurance companies refuse to pay for long-term antibiotics to treat chronic Lyme.
"We are delighted with this settlement," said Diane Blanchard of Greenwich, who said she was sick with Lyme disease for 10 years before a long-term antibiotic treatment relieved her symptoms in the late 1990s.
"The IDSA guidelines are now clouded by this decision. My greatest hope is that patients will regain their right to treatment," said Blanchard, now co-president of the advocacy group Time for Lyme.
Philadelphia-based health insurer Cigna Corp. (nyse: CI - news - people ) said it is reviewing the agreement to see if any changes in policies are needed. Cigna covers up to 28 days of intravenous antibiotic therapy for Lyme disease and, like many insurers, cites the Infectious Diseases Society's guidelines in its coverage plan.
Cigna does not pay for "repeated or prolonged" courses of antibiotics, saying they are "experimental, investigational or unproven."
Connecticut Attorney General Richard Blumenthal and advocates say the agreement is the first time the medical establishment has bowed to the pressure of a potential court fight and agreed to re-evaluate care standards.
"My main goal all along has been a process that is fair, open and free of conflicts of interest," Blumenthal said.
Blumenthal said his investigation found that some of the 14 experts who approved the 2006 guidelines got consulting fees, research grants and stock ownership from drug companies and other businesses that have a stake in the treatment and diagnosis of Lyme disease.
He would not name the panel members or the companies. He said the backgrounds of the new experts looking at the guidelines will be checked for any potential conflicts.
The issue involves antitrust law, Blumenthal said, because the panel excluded some opinions and evidence that may have supported other treatments in development, including vaccines.
Blumenthal's office did not take a position on the proper treatment of the disease or whether chronic Lyme disease exists.
The Infectious Diseases Society denied any conflict of interest.
"Panel members do not stand to profit from any recommendation in the guidelines," the group said in statement. "In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy."
Copyright 2008 Associated Press. All rights reserved. This material may not be published broadcast, rewritten, or redistributed
Posts: 209 | From maryland | Registered: Aug 2007
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posted
We cannot call the Guidelines "under investigation" anymore (feel sorry about it).
Perhaps term "questionable" will be appropriate until the new version is released.
What do you think?
Posts: 98 | From BC | Registered: Feb 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
[QUOTE]Originally posted by Lymen: We cannot call the Guidelines "under investigation" anymore (feel sorry about it).
Perhaps term "questionable" will be appropriate until the new version is released.
What do you think? [QUOTE]
I would use the word that Blumenthal used in his press release:
-- the "biased" defunct IDSA guidelines.
You can also use the words "rejected" and "struck-down", since the agreement requires that a new panel is formed and does it work under the supervision of an impartial medical ethics.
Or, since an agreement between the Attny General and the IDSA found the 2006 guidelines to be biased, you can call them the defunct tarnished guidelines -- produced with so many violations of ethical standards and with unreported conflicts of interest, so that the authors now cannot dispute their tarnished reputations.
[ 05. May 2008, 07:42 AM: Message edited by: Vermont_Lymie ]
Posts: 2557 | From home | Registered: Aug 2006
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Of course, I'd like the article to be biased in our favor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:
"Panel members do not stand to profit from any recommendation in the guidelines," the group said in statement. "In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy.
Oh that makes perfect sense on the surface if you're a total ****in' moron, but here is the truth. You (IDSA members) get paid "because" you deny the illness. You're saving the insurance company a lot more money than they are expending by denying symptomatic and antibiotic therapy to "Chronic Lyme patients."
Even if you list it as Fibromyalgia, or Chronic Fatigue, the medications are substantially cheaper to treat these diseases in contrast to more expensive antibiotic therapies, including especially IV therapy. Think about it, the vast majority of conditions are auto-immune and inflammatory based.
The drug of choice for Lyme patients is "Prednisone" before they get a correct diagnosis! How much does it cost to buy a container of 10-20 mg pills of steroids? Nearly nothing. The insurance company is making a killing (Literally) off denying Lyme.
The Insurance companies are "paying" you to deny yourselves an opportunity to generate revenue, because when their accountant is finished with the figures, they actually save a lot of money this way."
It's like the case in Woburn Massachusetts with the patients (children especially) who were falling ill with Cancer and various other anomalies. Beatrice was expending money in the millions defending a case in which they knew they were guilty of, but in the big picture, this multi billion dollar company 'saved' money by settling.
The case still set a precedent though, because Beatrice had to pay out almost half + of their annual income. Imagine a major company losing a whole year of income. Now "that" hurts, but it didn't break them.
The same thing with insuranc companies. They know exactly what they're doing. This is only "one" disease out of thousands of conditions they are paying out claims for, and they are constantly studying each controversial condition carefully, looking for whatever way they can to increase their bottomline, even if it means paying out settlments, paying off doctors, paying for medications given for misdiagnosed conditions, or even paying off political figures and FDA officials.
So, the claim they "denied themselves an opportunity" is a lot of horse****, they got exactly what they wanted, and their accountant nodded with a crooked smile.
Oh and don't forget, Forbes and a number of papers can go **** themselves too, because a lot of them are paid to print anti-Chronic Lyme articles. Unlike some of the insane "contrail" "area 51" and "water is being intentionally poisoned to cull the herd" conspiracies, the issue with the IDSA and the insurance companies, as well as the media are a true life, real deal, conspiracy, just like Beatrice and Woburn Massachusetts Leukiemia cluster (Which was denied by the medical community as well).
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
"Panel members do not stand to profit from any recommendation in the guidelines," the group said in statement. "In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy.
Now take the name in bold, and copy and paste that into your browser address bar. Once you've done that, read that page.
They hired a Public Relations company which is well known in Washington D.C. The company doesn't care which side it's on. Their job is simply to spin their clients situation/issues in order to show them in the best light.
I don't know about you, but you can polish a turd all you want, but it's still a piece of **** in the end.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
And you know which part I'm enjoying most about this? An IDSA member, or someone paid by them, is reading this thread right now saying "This doesn't look good."
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
My sister asked me, if, as a result of these findings, those of us denied IV and other abx could sue the IDSA for setting damaging/biased guidelines.
Especially when IDSA panelists prevented other research from being included -- research indicating that "chronic Lyme" patients benefit from longer term IV/abx (longer than 28 days!).
How many of us have lost everything due to their ommissions!?! (RHETORICAL QUESTION)
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
METALLlC BLUE, good work on the PR Firm.
I doubt though that any IDSA member gives a rip. I honestly think they have to have some serious mental dysfunction to be part of a group that bullies and damages so many people's lives in such a serious manner. It is literally criminal what this group has done, not just in their ignorance, but in their practice.
I don't think they have the capacity to care or they could not be a member or, especially, a panel member. IDSA = some very bad methods of torture by being welded to their "guidelines" - it's time they grew up and took responsibility for this torture and , contritely, amend their ways.
It is clear, however, they have no intention of doing such as the PR spin is more egotistical garbage.
Sigh. I hope true journalists really wake up and do their jobs.
But, sadly, the Forbes article is exactly the same on as on the MSNBC site. exactly. complete with some very bad reporting.
Note word choice:
(IDSA) The doctors group makes clear that current guidance for treating Lyme disease remains in place. - "IDSA MAKES CLEAR"
. . .
But that didn't stop claims of success by the attorney general and people who believe they suffer long-term effects of the tick-borne disease. - "CLAIMS OF SUCCESS" "PEOPLE WHO BELIEVE" Claims? Believe ?
. . .
The Infectious Diseases Society says it's never been proven whether these patients still have Lyme disease or something else. "NEVER BEEN PROVEN" - not accurate -
very powerful phrases.
I am glad that with the Forbes, online edition, that a comment posted leads to the original Atty. Gen's legal statement.
But it should have been better used by the reporter. They should interview some of the ILADS researchers. There is a great deal of research but the IDSA implies otherwise.
If instead of seeing my active lyme tests as impossible as it's gone on so long, if seen as persistent, I might actually be able to get treated. Illness, positive tests, uhhh... is that not proof of some type?
Sorry - just venting. I think this news brings up a great deal of frustration and, even though this report is encouraging, the IDSA spin is a threat to my getting my life back. They have not acted contritely at all. I expected them to say, "sorry" and "oh, wow, we really do need to open our eyes."
By their hiring a PR firm and the tone of their voice, they clearly intend to change NOTHING. Thanks to the Atty.Gen. or CT, though, they may not get away with it.
Oh, and why can't we see what the conflicts of interests actually are? that seems only fair. And, again, I wonder if some support their local media owners in some ways. I know the city in which I live that the main teaching hospital that so puts down lyme also spends a huge amount on advertising. No news team is going to loose that chunk of change.
Pollyana
. . .
[ 03. May 2008, 04:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by METALLlC BLUE: And you know which part I'm enjoying most about this? An IDSA member, or someone paid by them, is reading this thread right now saying "This doesn't look good."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by wiserforit: My sister asked me, if, as a result of these findings, those of us denied IV and other abx could sue the IDSA for setting damaging/biased guidelines.
Especially when IDSA panelists prevented other research from being included -- research indicating that "chronic Lyme" patients benefit from longer term IV/abx (longer than 28 days!).
Count me in!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
just wandering, thx for copying it here for all of us to read!!!
i'm just coming on and seeing 12 plus posts all about our LYME VICTORY due to ag Blumenthal!! yippee!
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