New Lyme Disease Guidelines Spark Showdown Expert panel says they're based on science, but foes say patients will suffer
By E.J. Mundell HealthDay Reporter
THURSDAY, Nov. 9 (HealthDay News) -- Battle lines have been drawn over new clinical guidelines on spotting and treating Lyme disease.
Depending on whom you talk to, the new recommendations from the Infectious Disease Society of America are the "best that science has to offer" on the illness, or a medical "travesty" that will lead to the suffering and even death of those affected by the tick-borne disease.
The former view is held by Dr. Gary Wormser, the infectious disease specialist who chaired the panel that drew up the new guidelines, which are published in the November issue of Clinical Infectious Diseases.
Specifically, the updated IDSA recommendations -- the first since 2001 -- state that "95 percent of cases of Lyme disease are cured with 10-28 days of oral antibiotics."
They also state that there is currently no credible scientific evidence that infection with Borrelia burgdorferi -- the tick-bone bacteria that cause the painful illness -- extends much past this period in patients who are treated soon after diagnosis.
That runs counter to the notion, held by many, that longer-term, "chronic" Lyme disease exists as a clinical condition.
The guidelines also strongly object to the use of antibiotics in patients beyond those 30 days, since long-term antibiotic treatment comes with its own medical risks.
While there's no rule that physicians must follow IDSA recommendations when treating Lyme disease, insurance companies often base their treatment coverage on these types of guidelines. State medical boards might also consult the recommendations when reviewing alleged malpractice cases.
All this means that "patients are now contacting us in droves all the time about their inability to get treatment," said Pat Smith, president of the New Jersey-based Lyme Disease Association, which represents 24 patient-advocacy groups across the United States.
Smith and other patient advocates are vociferous in their opposition to the IDSA guidelines. They argue that the recommendations are based on an incomplete, biased review of the science and fly in the face of observed clinical outcomes.
"I will tell you that from my experiences with tens of thousands of people from across the country, these chronic patients are helped by antibiotics," said Smith, who has two daughters affected by Lyme disease. "If they are helped by antibiotics, they should be allowed to have them."
Instead, she said, insurance companies are citing the recommendations as they cut off many patients' access to treatment.
Dr. Raphael Stricker is a San Francisco Lyme disease specialist and president of the International Lyme and Associated Diseases Society (ILADS) -- the largest medical organization devoted to Lyme illnesses. His group recently sent a letter to Clinical Infectious Diseases, asking that the journal retract the IDSA guidelines.
Stricker said he routinely ignores the guidelines in his own practice. But he added that he is able to do so because California has laws in place that protect physicians "who want to treat according to their own best judgment." Most states do not have such laws.
"So, if I were practicing in another state that did not have this protection, I would be very scared right now because of the IDSA guidelines -- I might be brought up before the board," Stricker said. "I think the guidelines are definitely having a chilling effect in the rest of the country."
Smith said she's also heard "from several people whose insurance companies have cut them off [from treatment] without anything but pointing to the new guidelines."
But Wormser said his group based the new recommendations on solid evidence.
"We looked at almost all the science that we could find on the subject," said Wormser, who is chief of infectious disease at New York Medical College, in Valhalla, N.Y. "In the guidelines, we actually cite over 400 studies."
He said the evidence from all this data was clear: There is no good evidence that Borellia bacterial infection persists past the first few weeks of treatment. That means that the risk to patients of long-term antibiotic therapy is unwarranted.
He also pointed to studies that show that people with a prior Lyme infection are no more likely than others to develop long-term problems.
Wormser stressed that he and his colleagues do not deny that the symptoms patients complain of are real. However, instead of labeling these symptoms "chronic Lyme disease," Wormser prefers "post-Lyme syndrome."
The distinction is an important one -- similar language has long been used to describe individuals who were once stricken with polio and who go on to develop a constellation of long-term symptoms called "post-polio syndrome," for example.
Wormser said intensive research is needed to determine what causes debilitating, long-term symptoms in patients with no trace of Borrelia in their cells. Right now, he said, doctors don't even agree on what symptoms characterize long-term illness. "How do you know when a person has it? What definition is there for it?"
According to Wormser, long-term sufferers complain of a wide variety of symptoms, many of which can be caused by other ailments.
"So, if you don't rely on some other test method -- just on your own [physician] intuition -- you can't possibly diagnose it correctly," he said.
Stricker takes another view, however.
"I have over 900 Lyme patients, and there is actually a lot of consistency in the type of symptoms patients have," he said. "So, my response to Dr. Wormser is that when you have a lot of clinical experience treating patients, you see patterns and you understand that things are treatable."
Stricker also contends that the IDSA panel did not, as Wormser claims, survey "all" the literature on Lyme disease. He said that, since the disease first emerged 30 years ago, more than 18,000 papers have been published on the illness. "He just looked at all the studies that he considered significant -- that's about 2 percent of the literature," Stricker said.
The IDSA guidelines do include one important disclaimer: A note that the recommendations "are not intended to supplant physician judgment with respect to particular patients in special clinical situations."
But critics called the disclaimer little more than window-dressing.
"That's not the way the guidelines are going to be interpreted," said Tom Forschner, executive director of the Lyme Disease Foundation, another patient-advocacy group. "Docs and insurance companies are going to look at [certain treatments] and say, 'Well, that violates the IDSA guidelines, therefore you are not going to be reimbursed or treated.' And that's where patients will suffer."
A Web search on Wormser quickly turns up scathing epithets from detractors who call him a "mass murderer" and "Dr. Death." Wormser said he's been puzzled by the animosity the guidelines have generated.
"We're not trying to do anything evil, we're actually very concerned about these patients' symptoms," he said. "We really encourage people to do further studies to find out what's causing this."
But Stricker believes the IDSA panel ignored the collected evidence and has now boxed itself into a kind of intellectual corner.
"At this point, it's really just politics," he said. "Politicians don't want to admit that they are wrong, and these guys don't want to admit that they are wrong, either."
More information
The full IDSA Lyme disease guidelines can be found here.
SOURCES: Gary Wormser, M.D., chief, division of infectious disease, and vice chairman, department of medicine, New York Medical College, Valhalla, N.Y.; Pat Smith, president, Lyme Disease Association, Jackson, N.J.; Raphael Stricker, M.D., president, International Lyme and Associated Diseases Society, and physician and medical director, Union Square Medical Associates, San Francisco; Tom Forschner, executive director, Lyme Disease Foundation, Tolland, Conn.; November 2006 Clinical Infectious Diseases
Last Updated: Nov. 9, 2006
Copyright � 2006 ScoutNews, LLC. All rights reserved.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Please take a minute and respond to the article by contacting the editors...
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dear Editor,
I am a chronically ill Lyme disease patient. Over the past 20 years I've worked as a volunteer with thousands of other patients who are in the same boat.
We are trying to deal with active, ongoing and debilitating infectious diseases that the so-called specialists won't acknowledge exist and prefer to label a "syndrome", till death do us part.
Can we blame them? After all, they are fighting to protect their floundering reputations, millions of dollars in grant and research money, patents, and additional income from Lyme related resources.
To admit they are wrong once again, after originally labeling Lyme a "viral illness" that required no treatment while patients died as a result, being involved with labs that the FDA had to warn doctors not to depend on, being tied to the failed Lyme vaccine that was pulled from the market after 1,000 plus adverse event reports were filed claiming people were allegedly injured and law suits emerged, well, to admit they were wrong now would simply add another nail in their coffin and set them up for massive legal actions.
Bottom line, if camp A was right, there wouldn't be a camp B.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I think we should reply, but in a very reasoned manner. No name calling, please.
If you go to the site where the article appears, they have a weird tick picture. It has only 6 legs, so it must be a larval tick, but it doesn't look like an ixodes scapulari at all.
posted
"Puzzled" by animosity? What a towering intellect. And what a liar.
Poor Dr. Wormser. Still using the same old failing tactic of trying to make us look hysterical and unreasonably hostile. Is that the best he can do?
It's not working anymore. Our numbers - our influence - and the body of scientific literature supporting our position - are all GROWING every day.
I wonder if HealthDay took this on in response to our letters from a few weeks ago, when they "broke the news" of the new IDSA guidelines.
Posts: 621 | From US | Registered: Jun 2006
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-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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posted
The Post Polio Syndrome affair was another example of medical science punishing the victims of a condition that medicine failed to understand. The Post Polio folks got the same course of medical treatment we get--derision and comtempt. In reality, what happened to Post Polio victims was that their original viral infection destroyed numbers of their motor neurons, and other motor neurons expanded in size to compensate functionally. Over 20 years or so, the expanded motor neurons began to poop out, and become somewhat dysfunctional. This lead to to the weakness and tiredness that patients complained of. Medical science eventually figured that out, and mailed patients statements of deep apology for the psychologoical damage they had inflicted (NOT).
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I found the article incredibly supportive of our issues and the fact that they ended it with Stricker's quote was very good. I think that it was more in our favor than against us. I hope people are not writing negative comments to the editors. I found the article to be factual and supportive of our plight.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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quote:I found the article incredibly supportive of our issues and the fact that they ended it with Stricker's quote was very good. I think that it was more in our favor than against us. I hope people are not writing negative comments to the editors. I found the article to be factual and supportive of our plight.
I agree, esp. about the article's ending. Can't imagine the IDSA is pleased with this.
Even if it is hard to read this stuff from Wormser in print, presenting both sides fully and fairly only benefits us - because we're not the ones hiding from the truth.
I also hope no one goes negative, though I think it's important to show the HealthDay editors how many of us are on the side of ILADS/LDA and why. Remember, their stuff gets picked up nationwide and by yahoo, etc.
Posts: 621 | From US | Registered: Jun 2006
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posted
You know I can't help but get the feeling that some Dr's(Wormser et al) know exactly how lyme is cured without doing all the research. Other wise how you have such an adimant opinion WITHOUT doing the adequate research to support it???
BEFORE you come to the CONCLUSION you MUST do the RESEARCH...SO where is that adequate reasearch?? we need to ask...
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
I just sent Forbes a letter to the Editor re: the article:
Dear Editor,
I want to thank you for the excellent article in your Health section on the new treatment guidelines for Lyme Disease by the Infectious Disease Society of America. As a person who is in treatment for chronic Lyme disease, I am heartened by your fair coverage of this hugely important debate.
While Dr. Wormser claimed to have done extensive research for the new guidelines, citing over 400 research studies, the President of The International Lyme And Associated Diseases, Dr. Stricker points out that his organizations guidelines use the data from over 18,000 research studies! What an enormous difference! Dr. Wormser and his colleagues are simply flat out wrong when they claim there is no ``significant research'' to support their claim that the bacteria that causes the disease can resist and survive short periods of antibiotic treatment.
I heartily wish that an FBI quality of investigative journalism could be turned on this small group of guideline authors, to reveal any monetary ties they have to big insurance companies - insurance companies very aware of the fact that the IDSA treatment guidelines will save them millions and millions of dollars by allowing them to refuse further life-saving treatment for Lyme patients.
The bottom line is that there are two standards of care that exist now for the patient diagnosed with Lyme Disease. As with any other illness, the patient must have the right to choose which standard to follow. It is criminal to withhold treatment that dramatically improves the quality of life of the patient.
I am thankful daily for the fact that I found an ILADS affiliated doctor who was savvy and smart enough to test my blood for Lyme disease after two years of terrible suffering and diagnosis searching, and to treat me past the arbitrary ``28 day max'' guideline that the IDSA espouses. The treatment is giving me my life back. And I have heard my own story over and over again as I have met others in the Lyme community. Patients who were not helped by ``respected'' infectious disease doctors who were unwilling to step outside of the erroneous guidelines set forth by The Infectious Disease Society of America. This group can not, and will not, silence those of us whose experiences are living evidence. .
Sincerely,
Theresa H. Boer Menlo Park, CA.
Posts: 364 | From California | Registered: Sep 2005
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posted
I also think we can all call/email/write to all our state and congressional reps to discuss the sorry state of affairs re Lyme/coinfections and the IDSA guidelines, the need for their retraction, and to push the congressional bills.
By the way, what happens when the original sponsors aren't here anymore due to being ousted in the election? Like Santorum and Kelly, I think.
Posts: 13116 | From San Francisco | Registered: May 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
It seems quite probable to me that John Hall, of the group "Orleans", who was just elected as a representative from New York would know Daryl Hall of "Hall and Oates." Daryl Hall has chronic Lyme, talks about it in concerts and to the press, and has ILADS information on his web site. Does represetnative elect Hall have any constituents on this board? This might be an angle.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
I own a home in John Hall's town of Dover and vote in NY. I did not vote for him though, I voted for Sue Kelly who was a good advocate for Lyme and Lyme funding over her years in Congress and will be sad to see her go. I really don't think that John Hall will be as effective as Sue Kelly who had the seniority and experience in Congress. I can see John Hall only serving one term.
Posts: 40 | From CT | Registered: Oct 2006
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this is a non-Paritsan issue, and if the new legislators are made aware of the constuituent concerns and the history of legislative action on the Lyme issue, they will come on board.
we (the Lyme community) just have to maintain the momentum by writing them as per Tincup's post, and in support of the proposed federal legislation once focus swings back to it (i believe the guideline issue is the first priority).
as for the issue of the guidelines, we should all be involved in the action alerts posted here, and response to the articles coming out.
we don't have to diss the other side, just, simply, MAKE IT PUBLIC - and of course, continue to point out the flaws in their guidelines and research base, and continue to shine a light on the tremendous amount of research being ignored -- and the financial ties and interests of the men who wrote guidelines on a disease condition they do not treat.
another major point: it has been well extablished, beginning with Lorraine Johnson's article - that there are TWO STANDARDS OF CARE for Lyme disease. this is a critical arguement as well. one i would like to see highlighted along with the other great points being made.
these guidelines overstep to the point of civil rights violation, IMO, by not only issuing influential guidelines that are not based in the available science - but they go so far as to restrict access to the other standard of care. these guidelines condemn it.
the doods went too far, so stay with the facts - and make it public in a well-reasoned manner.
hang'em with their own rope.
mo
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(1) any of numerous relatively small elongated soft-bodied animals; also many insect larvae
(2) a person who has a nasty or unethical character undeserving of respect
(3) A program or algorithm that replicates itself over a computer network and usually performs malicious actions, such as using up the computer's resources and possibly shutting the system down. Also see virus.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Wormser Puzzled by Guidelines Animosity!!?
What a idiot
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And what a liar.
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