No Basis For Chronic Lyme Disease By WILLIAM HATHAWAY | The Hartford Courant 5:12 PM EDT, October 3, 2007 Article tools E-mail Share Digg Del.icio.us Facebook Furl Google Newsvine Reddit Spurl Yahoo Print Single page view Reprints Reader feedback Text size: The controversial diagnosis of chronic Lyme Disease -- used by some doctors to justify treating thousands of people with antibiotics for months or even years -- has no scientific basis, according to a review being published in tomorrow's New England Journal of Medicine.
The review contains no new scientific information, but the sweeping analysis of dozens of existing studies in a prestigious medical journal is a strong rebuke to the so-called "Lyme-literate'' doctors, whom the authors suggest treat patients for a condition they do not have.
The lead author of the review, Dr. Henry Feder Jr., of the department of pediatric and family medicine at the Connecticut Children's Medical Center in Hartford, said the review was conducted to correct misinformation on Lyme Disease being spread on the Internet and other places by advocates of chronic Lyme.
Text: A Critical Appraisal of 'Chronic Lyme Disease' Lyme Disease Rates For 2006 Multimedia Lyme Disease Links "I can't say there is no such thing as chronic Lyme,'' Feder said. "But the hard science says chronic Lyme does not exist.''
The authors of the study also take to task lawmakers who attempt to mandate insurance coverage for long-term antibiotic treatment for Lyme, along with Connecticut Attorney General Richard Blumenthal, who launched an anti-trust investigation over the recent approval of treatment guidelines that do not recommended extended courses of antibiotics.
Advocates in the long-term Lyme camp criticized the study, saying it ignores valid scientific evidence of long-term infection by the Lyme bacterium and will lead to withdrawal of effective treatments for thousands of patients.
"It is just the same old people saying the same old thing,'' said Pat Smith, president of the Lyme Disease Association. "They just choose to select one set of research and ignore other research.''
Publication of the review in such a prestigious medical journal will lead to the inability of thousands of people to get treatment for potentially debilitating symptoms such as fatigue, joint pain, cognitive difficulties and other neurological ailments, say advocates for Lyme disease patients, say some patient advocate groups.
"It's a disaster for people with chronic Lyme Disease,'' said Dr. Raphael Stricker, president of the International Lyme Disease Association. "Since it appeared in the New England Journal of Medicine, everyone will take it as dogma and nobody will want to pay for treatment.''
Advocates like Smith and Stricker agree with Feder on one thing - thousands of people who show up at doctors' offices suffering from mysterious joint pain, fatigue, mental confusion or disabling neurological conditions.
But they don't agree on how many of these patients actually suffer from Lyme disease. Feder and mainstream medicine hold that the great majority of Lyme cases are easily treated with short courses of antibiotics if the disease is identified quickly.
But Stricker and Smith say existing diagnostic tests miss many Lyme cases and thousands of people end up suffering needlessly when extended courses of antibiotics can eliminate or at least neutralize the stealthy Lyme bacterium, B. burgdorferi.
But the journal's review argues that the great majority of people suffering from those symptoms do not have Lyme. Feder says that at least twice a week he gets a call from Connecticut pediatricians who say that parents of patients believe that their child has Lyme and are demanding antibiotic treatment, even in the absence of positive test for the disease.
"Ninety percent of those patients who walk in my door don't have Lyme,'' he said.
No rigorous study has found patients who had been clearly infected with Lyme benefit from long-term courses of antibiotics more than they would from a placebo. Also, many subjects suffered adverse side effects from antibiotic treatment.
"And worse, doctors tend to miss real underlying conditions,'' when making diagnosis of chronic Lyme, Feder said.
Feder does acknowledges he and other doctors sometimes simply do not know what is making patients so sick. And those patients are particularly susceptible to doctors who claim they have a cure for their symptoms.
"I have to tell them that I can't help you by giving you more (intravenous antibiotics), Feder said. "As a doctor, that really hurts me. If I don't give it to them, I am bad guy.''
But advocates for Lyme patients say that is exactly what doctors are doing – hurting patients.
"Doctors will tell them they do not know what is wrong with them,'' Smith said. "They are punishing patients by taking away the only treatment that is working for them.''
Smith and other patient advocates are irked that some of the authors on the study are the same being investigated by Blumenthal.
For instance, the senior author is Dr. Gary Wormser of New York Medical College. Wormser also helped write Lyme treatment guidelines for the Infectious Disease Society of America, which recommended against long-term use of antibiotics for treatment of Lyme.
The financial interests of Wormser and others led Blumenthal to launch an anti-trust investigation into whether the scientists deliberately ignored evidence that could justify the use of antibiotics for more than 30 days and therefore deny patients antibiotic treatments.
The doctors have denied that commercial interest influenced content of the written guidelines and some have criticized Blumenthal for interjecting himself on the wrong side of a scientific debate.
Contact William Hathaway at whathaway@courant
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
it is totally infuriating (but unsurprising) that the NEJM would publish unscientific crap like this.
it is also one more indication, as if we needed it, that the Wormser et al/IDSA camp is playing all out for keeps and is aiming straight for the jugular of all our LLMD's. They couldn't be any clearer about their intent.
this is no time to be silent.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
It always amazes me when someone takes the position that Lyme is being diagnosed
When other (potential) diseases/conditions are being missed.
How about when you have every viable test known to mankind and the only positive result you
Get is a Lyme specific response on a Western Blot.
Oh yeah, that's right......it must be Post Traumatic Stress Disorder.
I think since this disease is so easily identified and easily
Erradicated via short term use of antibiotics,
The authors and publishers of the study should volunteer to be human guinea pigs,
And be voluntarily infected with bb. Then they need to wait and be mis-diagnosed over and over,
Year after year, then finally get tested via the Elisa (probably be negative),
Then the Western Blot from anywhere except Igenex,
Then seek short term antibiotic treatment for Lyme.
How about putting your body where your opinion/publication is.....
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
=======For instance, the senior author is Dr. Gary Wormser of New York Medical College. Wormser also helped write Lyme treatment guidelines for the Infectious Disease Society of America, which recommended against long-term use of antibiotics for treatment of Lyme.
The financial interests of Wormser and others led Blumenthal to launch an anti-trust investigation into whether the scientists deliberately ignored evidence that could justify the use of antibiotics for more than 30 days and therefore deny patients antibiotic treatments.
The doctors have denied that commercial interest influenced content of the written guidelines and some have criticized Blumenthal for interjecting himself on the wrong side of a scientific debate.======
They're sounding desperate, aren't they~!?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
tutu-
actually, i don't think they sound desperate, unfortunately.
i think they are quite methodically waging a comprehensive campaign, including publishing articles in both the popular press and in scholarly/medical journals.
of course they are countering Blumenthal and trying to discredit him every way they know how. He stands for Establishment and therefore lends credibility to how our LLMD's treat Lyme. For that, he needs to be destroyed.
Ugly? Oh yeah, but also standard hard ball politics, NOT desperation.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
What about Lyme Conventions - Do they ever attend.
and if not - Why can't we attend one of their conventions -
we can move in droves across the country and picket like scorned workers and prove to them that we are not at all crazy - THEY ARE!
-------------------- Those who say it can't be done, should get out of the way of those who are doing it! Posts: 34 | From South Dakota | Registered: Sep 2007
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tailz
Unregistered
posted
Well, today Dr. S told me he won't treat me for coinfections, unless I pull a positive - knowing that we only have tests for like 2 of the 100 strains of some bugs. I cursed a little and told him I didn't respect him - and I don't.
In fact, I almost didn't even get mino today - I had been Quest positive back in June (my second positive - first one was IGeneX), but since my Quest test in August was negative, he almost said I didn't have Lyme!
I no long trust any 'dot org' website. If you send questions to lyme.org, he's the one who will get the question and answer it.
Matter of fact, he wouldn't test me for food allergies either. He wanted to send me to an allergist.
So basically, the guy who runs the tick center is trying to keep the insurance companies happy.
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ILADS Members Question Motives of New England Journal of Medicine Article on Lyme Disease Treatment -- Article in New England Journal of Medicine Fail
Wed Oct 3, 5:28 PM ET
International Lyme and Associated Diseases Society (ILADS) criticizes just-published article in the New England Journal of Mediicine. Article concludes Chronic Lyme Disease a misnomer, despite significant real-world evidence proving otherwise. Bethesda, MD (PRWEB) October 3, 2007 -- Members of the International Lyme and Associated Diseases Society (ILADS) voiced skepticism regarding the conclusions of a newly published article in The New England Journal of Medicine entitled "A Critical Appraisal of Chronic Lyme Disease".
The article, written by a committee of researchers, erroneously concludes that chronic Lyme disease is a "misnomer", citing lack of scientific evidence proving the existence of the condition. ILADS members pointed out the article does not reflect real-world patient experience with the disease.
"We have great respect for the New England Journal of Medicine," states Dr. Raphael Stricker, President of ILADS. "But we are concerned this article will continue to foster inadequate care for patients who are suffering from the longterm affects of chronic Lyme disease."
ILADS members believe the article's conclusions ignore more than 19,000 scientific studies on tick-borne diseases and reflect a huge conflict of interest. Specifically: * The article was written by a group of researchers who have consistently voiced a narrow viewpoint on the existence of chronic Lyme disease and appropriate treatment. Eleven of the authors were members of the panel that formulated the 2006 Infectious Diseases Society of America (IDSA) Lyme guidelines. The panel is currently under investigation by the Connecticut Attorney General for exclusionary practices in formulating the IDSA guidelines. * The authors of the article failed to disclose that they are under investigation by the Connecticut Attorney General. This omission violates the "full disclosure" policy of the journal and creates a conflict of interest by calling into question the authors' motives for writing the article. * Several authors of the current article also participated in formulation of copycat Lyme guidelines for the American Academy of Neurology. Those guidelines were presented as "independent corroboration" of the IDSA Lyme guidelines, when in fact the same individuals were involved with both guidelines and employed the same exclusionary tactics that prompted the Connecticut Attorney General's investigation.
"It is unfortunate that this article perpetuates the narrow viewpoint on Lyme disease," added Stricker. "We believe it is in everyone's best interest to broaden the scope of the discussion within the medical community in order to better address the suffering among patients."
About ILADS: ILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
For more information contact Pam Kahl at 503.284.1534
International Lyme and Associated Diseases Society Pam Kahl (503) 284-1534
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Wormser must have a stranglehold on the NEJM. They publish his regularly.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Well, Pam, the IDSA convention is this coming weekend in San Diego. I wish people would picket them.
Posts: 13116 | From San Francisco | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Heres my responce to Jr.
Treepatrol Join the community Annville, PA 1 min ago Henry Feder Jr. You are wrong wrong wrong!!! Iam 49 yrs old Male worked forestry and have lyme disease since 1988 thats when the fevers started and could not get a possitive until I went to a Internist who has treated lyme for over 18yrs. Anyhow I had the tests by this Dr in 2003 and was high possitives on both western blot and luat lyme blot assay 3 day urine tests all 3 days were possitive.
And before I went to him I had been tested by 4 different hospitals in my area from 1988 up to 2003 sometimes tested twice a year somtimes 3. Thats your stinking elisa test. I had roving joint pain and trembling hands and fever's all through those years my eye sight went from 20/15 to now using 2.75 mag to read. I also ached all the time.
And I never never had a bullseye rash I have been bitten over hundred times and I have had to literally dig ticks out of me at least 15 times. They didnt have the good tick removal tools like they do now. Anyway I am still being treated 2003 to present. I feel much better my hands dont shake anymore and the soreness and joint pain is minimal now. So dont tell me its not Chronic evreytime I go off abx's the joint pain and aches get worse.
And it aint a placebo Jr.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Contact the Courant author to ask for more investigation.....tell your story.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
If it's not lyme and co-infs why do I have a low CD57, global cortical hypoperfusion, peripheral neuropathy, brain fog, fatigue, anxiety, and buring itchy and prickly skin. These things are not fake! More than 2 yrs of abx...
The neuro, allergist, cardiologist, rheum, internist, family doc... full body CT scan, a bunch of MRIs, mammogram, SPECT, biopsies, blood tests (including genetic stuff)... NOTHING!
This scares me to no end because the NEJM packs a POWERFUL punch, regardless of the authors.
Sad today...
Posts: 300 | From Northeast | Registered: Dec 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Treepatrol I lOVE your letter especially the last line*)!!! Totally cheered me up!!! I am so glad you exist- and are here- and us all-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Well they better figure out what to do with us. Especially since US is growing by hundreds of thousands. I don't think it will work putting us all under one roof and calling us mental patients.
We are but, can you image? Watch out when the group starts herxing!!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
"I can't say there is no such thing as chronic Lyme,'' Feder said. "But the hard science says chronic Lyme does not exist.''
HARD SCIENCE.....I'd like to show this DR. some hard science....and some from the kids too.
What an abuse to the children.This is the man saying Lyme Disease is a MYTH,and then chuckles about it,like our suffering is a LauGHING MATTER.
"Every week, Dr. Henry M. Feder Jr. gets at least a couple of calls from pediatricians who have patients with achy joints, fatigue and other symptoms they can't explain. The parents of the children often insist the problem is Lyme disease.
But Feder, who works at the Connecticut Children's Medical Center in Hartford, says in virtually all those cases there is no evidence of infection by the tick-borne bacteria. He is forced to tell desperate parents that long-term treatment with antibiotics will do their child no good.
Today, the New England Journal of Medicine is publishing a review..."
Posts: 621 | From US | Registered: Jun 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
They changed the way it was working before now heres a link that should work.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by tailz: I no long trust any 'dot org' website. If you send questions to lyme.org, he's the one who will get the question and answer it.
What are you talking about?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I was so ****ed off I made my first public comment ever.
I tend not to be activist but I'm really getting seriously 'annoyed'.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Unfortunatly I agree with sometimes dilly, THEY KNOW EXACTLY WHAT THEY ARE DOING. It. Makes me sick. I snet my comment.
Posts: 161 | From midwest | Registered: Jul 2007
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Notice how no mention is made to compare the amount of funds and research being done into chronic Lyme by BOTH camps?
Except Columbia, LLMDs are mostly unaffiliated with deep pocketed academic research hospitals to fund research.
Science based research at academic hospitals costs money. The lack of evidence excuse needs to be balenced with the reality regarding the dirth of $ and research being done by our camp to publish such "science."
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I am so relieved to know that I'm not really sick.
(well not as sick as the authors of this article, anyway)
Posts: 1761 | From USA | Registered: May 2006
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posted
I am so ****ed I cannot think straight. Or is it the lyme. NO, it's can't be the lyme, since there's no such thing.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
write letters
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
My main question that keeps coming to mind over and over that still never gets answered by IDSA is:
Since it's statistically improvible that Bb is detected and eliminated in 100 percent of the cases (even by IDSA standards) then what happens to the Bb in those "rare" cases where the Bb is not irradicated?
IDSA admits they use abx for 21 days but even with an ear infection, sometimes you need to be retreated. So on that assumption, what do they feel happens if they don't get it all?
Is it suppose to go away on its own and if that's the case, why would we need abx even by THEIR admission. It would be treated like the flu and we wouldn't need them at all.
Their theory has so many holes in it and I've yet to be able to get an answer to this question from any from the IDSA camp. Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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You said, "Is it suppose to go away on its own and if that's the case, why would we need abx even by THEIR admission. It would be treated like the flu and we wouldn't need them at all."
Exactly and well said. Why treat the primary Lyme infection if, according to IDSA, there are NO RISKS when the patient goes untreated or undertreated?
As you said, the IDSA can save the insurance companies EVEN MORE MONEY by treating Lyme like the 24 hour flu. Look at all the money wasted when President Bush contracted this trivial annoyance.
Thanks, Dave
Posts: 175 | From Colorado | Registered: Feb 2007
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we can move in droves across the country and picket like scorned workers and prove to them that we are not at all crazy - THEY ARE!![[toilet]](graemlins/toilet.gif)
regularly.
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