Frankly, I get so "ticked off" by this guy that I can hardly speak muchless write!
Tincup waxed eloquent vs. another article. We need more silver-tongued writers for this one! Bids?
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hey, Dr. Wormser suggests that anyone who has been diagnosed with chronic Lyme disease get a second opinion.
Has anyone ever even thought of doing that? (sarcasm).
Personally, I have had about 100 second opinions BEFORE it turned out to be chronic Lyme.
What do these people take us for, idiots?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm sorry, I tried.
I just can't read this today. i don't have the patience of the stomach for the worm's nonsense right now.
I'll have to come back to it, when I'm in a different mood.
thanks for posting it though.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
From Wormser: "... and to society at large through the emergence of antibiotic-resistant "superbugs."
That's one of their main concerns. Sacrifice US for THEM. Let us die, so others don't.
HUH??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I'm with AliG. Besides, he didn't space his article so I can read it anyway.
I had over 40 years of worthless opinions. Finally I got a Lyme dx and treatment, and for the first time I began to improve rather than continue in the downhill spiral to nowhere'sville!
Take this Wormy!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Ok..sorry for this long post and yes, it is a RANT!!!
HE SAYS: The IDSA Lyme guidelines also cite numerous studies that have shown that the majority of patients who receive the diagnosis of "chronic Lyme disease" have never in fact had Lyme disease at any point. In one of these studies, more than 50 percent of the misdiagnosed patients had other treatable medical disorders.
AND THEY EVENTUALLY WERE DIAGNOSED AS HAVING ..........WHAT????
And what tests were done to prove they didn't have lyme disease but had something else?
Oh wait, there is no good/reliable test for lyme.
And HIS recommendation is to seek a second opinion???? A second opinion???!!
Dear Lord, I and how many of us here have had so many second, third and fourth opinions?
I want to sue all of the doctors who misdiagnosed me from 14 years ago! Oh yeah...I have CFIDS, oh wait no.Fibro, oh wait no...Depression, oh wait no....it's just that a woman of MY AGE should expect physical changes!!
None of them were right.
And I love that our folks are referred to as "individuals" protesting. LISTEN QUACK!!! WE ARE SICK PEOPLE/PATIENTS/THE ABUSED!
We do need a MAJOR push to post a lot of rebuttals on the site if we can. Let's get posting fellow lymies!!
I hate that I'm even going to say this, but I wish he would get lyme and suffer as we do. And I would never try to harm someones career, but he is ******** with OUR LIVES HERE!!!
These whites coats sitting and pontificating without any knowledge of what this disease has done to our lives make me want to
Maybe we should all make appointments with him and the other members of the committee to get a second opinion!
Perhaps we should all make appointments and cancel them on the days we're supposed to go. If he stops making money, he and his group will go out of business real quick and they'll all get fired!
And for those who CAN go to see him, wouldn't that be a hoot for thousands of people going and saying to him, "OK, so I don't have chronic lyme? TELL ME WHAT I DO HAVE!!"
I haven't read his credentials.....is a a doc that takes on new patients?
I so want to kick him in the unmentionables. Posts: 867 | From PA | Registered: Jan 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
From the response I suspect that these guys are starting to feel some heat. As always with these fellows: When the going gets rough just tell everybody how smart you are and how everybody else are stupid idiots.
And, what about the other 50% of the people, what the he11 do they have? Non organic Mental disease i suppose? (oh no! we can;t say that because fallon has those pictures...) Maybe this new syndrome is "datwaklemwormophobiitis"... yeah thats right lets name it after our selves...but it is not related to lyme....
I am tempted to try to carry out an intellegent conversation with one of these guys to see how they would deal with a person who has DONE IT BOTH WAYS, IDSA first and then ILADS....due to IDSA failure. This is one thing I know absolutely first hand...
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Makes me wonder if the lyme guidelines of the IDSA are atypical. If they got this one so wrong, should people start looking crosseyed at all the others? They have a lot of other guidelines.
Posts: 8430 | From Not available | Registered: Oct 2000
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
***The Infectious Diseases Society of America has more than 8,000 members and is the largest professional society of its kind in the United States.***
Perhaps we could take away some air out of this statement.
Although IDSA has 8000 members only 15 or so took parts in creating the questionable Guidelines. Most IDSA members work in area far away from Lyme disease and have no opinion on the topic.
In addition, many IDSA members are not only in disagreement with the new IDSA guidelines regarding Lyme disease but some actively oppose them.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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quote:Originally posted by cave76: Edited to read:
The guidelines were based on an exhaustive) (but not too exhaustive) review of (some of the) published medical literature (but not all of the published medical literature; special attention was given to the literature that only supported OUR views) on the clinical assessment, (OUR clinic only, not the many others in the world) treatment, (treatment that lasted more than 28 days was discarded as not being pertinent) and prevention (telling people to tuck their pants into their socks is one of the best ways to prevent Chronic Lyme) of Lyme disease in the U.S.
You got it!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
david1097....I agree with your statement more than any statement you've ever made here! Awesome!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
This pathogen mutates (changes its cell wall protein expressions..think of it as "changing costumes") according to temperature changes, pH changes and CO2 levels.
Adding tetracycline mutations, if they do indeed happen, is a moot point.
They mutate under NORMAL conditions!
Here's the documentation:
B. burgdorferi alters gene expression and
*protein synthesis in response to temperature, pH and other uncharacterized environmental factors*.
The hypothesis tested in this study is that dissolved gases,
*including CO2, serve as a signal for B. burgdorferi to alter protein production*
and gene expression. PMID: 17098904
J Bacteriol. 2006 Nov 10
Detection of antibody to C6, a peptide that reproduces the sequence of the sixth invariable region within the central domain of the
VlsE protein
of Borrelia burgdorferi, is used currently for the serologic diagnosis of Lyme disease in humans. The VlsE genetic region is retained but
*altered expression of this molecule could affect diagnosis*
by the C6 ELISA. PMID: 17108288
Clin Vaccine Immunol. 2006 Nov 15
1. Bb alters its protein in response to temperature, pH and CO2 levels.
The C6 ELISA test may be inaccurate IF the VlsE protein is altered.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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quote:Originally posted by david1097: From the response I suspect that these guys are starting to feel some heat. As always with these fellows: When the going gets rough just tell everybody how smart you are and how everybody else are stupid idiots.
Absolutely!
Posts: 240 | From MA | Registered: Nov 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Dr. Wormser~
I have some serious concerns regarding your letter to The Journal News.
(1) The IDSA may be the largest professional organization of its kind in America, as you stated. However, that does not mean that its members are well informed about Lyme disease. The ID doctor that reviewed my case stated ``You cannot have Lyme disease for lyme does not have a latent phase and it gets better without treatment.'' (Really??!!)
(2) The IDSA guidelines cite 400 articles, when in fact there are over 18,000 articles published about tick borne diseases. That is hardly an ``exhaustive review of the published medical literature.''
(3) Lyme disease is a fairly new disease in the United States. It is not unusual for medical groups to not have a good grasp on what treatment actually works. Consider recurrent C. difficile. Flagyl and Vancomycin have been the treatments of choice for this disease, yet for some patients they relapse repeatedly. Just recently, a new drug, Rifaximin, was suggested as a possible cure. It seems to work in patients where the other drugs have failed. Is Rifaximin in the textbooks for treatment of C. difficile? No. Is it presented at conferences for GI doctors to learn about. Yes.
Is long term antibiotic treatment for Lyme disease in the textbooks? No. Is it presented at conferences for doctors to learn about? Yes. At least for those doctors who are open to learning.
I went from being an incredible healthy athletic woman who participated in strenuous athletic events to someone who had to lean against a wall to stand up, and who had multi-systemic problems. Seventeen doctors didn't have a clue what was wrong with me. (Funny, doesn't the IDSA guidelines state that Lyme disease is the most common vector borne disease in the U. S.? Shouldn't more doctors know about it? Seems to me the word isn't getting out about this disease!)
Fortunately, I found my way to Columbia University Medical Center. It was recommended that I start on IV antibiotics due to my significant CNS involvement. It took several months of IV antibiotics for me to feel like I was in the land of the living again. I would still be a very sick woman if I had been treated by the IDSA guidelines.
Due to a fungal infection in the picc line, the antibiotics were discontinued. Three weeks later many of my lyme symptoms, which had disappeared, returned. This is not unlike what happens to a person with recurrent C. difficile when antibiotics are stopped for that disease. C. difficile can return. So can Bb. The main difference between the two diseases is that there is a good test for C. difficile. There is not one for Lyme disease.
I have been on multiple rounds of antibiotics for C. difficile, yet, I would still relapse. In spite of that, there was not a single GI doctor that would say I did not still have the disease. Yet there are plenty of doctors such as yourself that say that Lyme cannot exist after a minimal amount of antibiotic treatment . What a ridiculous assumption!
When antibiotics were restarted in me for Lyme treatment, the Jarisch-Herxheimer reaction put me in the ER with tacycardia. See ``Lyme Carditis and Borrelia-Associated Dilated Cardiomyopathy'' Heart Failure Reviews 1999, for a description of this event.
Several days later, I awoke feeling quite ill and had a circular rash on my abdomen. A few days after that I developed a stiff neck that would not move in any direction and a very sore left elbow. The stiff neck last 2 weeks. The sore elbow 2 days. I can only believe this is an ongoing infection. To say otherwise goes against all clinical signs of Lyme disease.
May I suggest, Dr. Wormser, that you listen to the patients who have Lyme disease and the doctors who treat it beyond what the IDSA recommends. Perhaps you will learn something that could benefit Lyme patients. Otherwise, you will end up like the GI doctor who sticks with the status quo of C. difficile treatment.....and misses the cure for their patient.
I have experienced both a fungal infection in the picc line and 11 months of recurrent C. difficile. Both of these experiences pale in comparison to the horrors of untreated Lyme disease that I also experienced.
T. C. Arizona (where Lyme disease doesn't exist)
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Lymetoo: posted 09 December, 2006 04:02 PM -------------------------------------------------------------------------------- From Wormser: "... and to society at large through the emergence of antibiotic-resistant "superbugs."
That's one of their main concerns. Sacrifice US for THEM. Let us die, so others don't. -------------------------------------------------
Bingo Lymetoo! I am afraid you are right
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I had over 40 years of worthless opinions. Finally I got a Lyme dx and treatment, and for the first time I began to improve rather than continue in the downhill spiral to nowhere'sville!
Lymednva, Your too tired to read the article today, but your almost have a letter! This is a very powerful paragrah!
T h e P r o o f is in the P u d d i n' Von
Posts: 258 | From Washington State | Registered: Nov 2005
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If this guy only knew how many people he is personally responsible for hurting. He must be so caught up in his own world that he refuses to rethink his position and admint that someone else might know more than him.
That sad thing about men like this is that he will never apoligize even when the day comes to admit he has stood between people and their treatment.
Anyways, he really does not have a clue.
CaliLymer
Posts: 215 | From CA, USA | Registered: Nov 2004
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wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Areneli,
Please don't go there.
I think we have plenty of ammo telling the world why Wormser and the IDSA are wrong. Trying to figure out why they are being so pigheaded is counterproductive. We would be guessing, and they would be able to argue on points that are not central to the discussion.
I'm curious about why they do what they do, but it's not as important as getting them to stop it!
IDSA Lyme guidelines = bad science
Why they would lean on bad science is pure speculation. Getting this country to allow for opposing treatment guidelines is our goal.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Many of us with chronic lyme can be classified with secondary medical conditions that can be TREATED with something...
the operative word being treated ... which usually means put on pills as long as the problem persists.
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I took the liberty of reposting a message from a different thread...It looks highly relevant to this disucssion.
Start--- This is a truly amazing article explaining the reason for the resistance of the medical establishment to embrace new theories that challenge existing medical dogma. Directly applicable to our current situation with Lyme disease.
It is a long article (20 pages) but it is worth the read, plus it provides a great rebuttal argument to morons like Wormser.
Is is possible that it is known by some that chronic bacterial diseases might be responsible for a multitude of neurological syndroms, or perhaps even a number of physical ailments?
If this is true, what will be the impact on sales for drugs for mental disorders such as mood enhancers and ADAH. What about for heart related ailments or any number of other drugs, all patented and all big money makers.
The answer is simply "it will cut into sales", maybe in a big way. So easy to cure my A$$, "cure" people now, treat them later with something that they will need for life... Its a much better money maker, and far more predictable in terms of future sales.
There has been a lot said about the influence of insurance companies, but in fact it may be the drug companies that are behind the whole... "no, bacteria can't cause this or that"....thing. I have often wondered why the drug comapnies are very quiet on the Lyme and associated diseases front. This may be the reason.
I am not saying that this is true but it sure makes one think about it given the past history with a much easier to prove and study organism.
Forgot to mention ... It is real interesting that these same guys where the guys working with big pharma on the vacine....
Posts: 1184 | From north america | Registered: Feb 2003
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
shazdancer,
I don't say we should. Just wanted to know what others think.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
"IDSA members have been at the forefront of preventing and treating Lyme disease. Our singular mission is to find out what is best for patients."
When they develop something safer & more efficacious, then there's something to discuss. Until then, this is all we have & they have nothing to offer.
Perhaps the energy wasted in debates & rebutals should go reaseach for better diagnostics & therapeutics...
Spending $ on guidlines & to challenge lt abx is a waste when it could go for developing better diagnostics & therapeutics...
Notice how no mention of metals, molds, viruses & parasites is made? Hello, this is a multi-faceted systemic illness.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
areneli,
Regardless of race or religion, FOLLOW THE MONEY TRAIL. People work on three things. Money, Sex ,Ego.
You can be sure that one of those three is behind the problem... given the profiles that are on the net, I would say it is a combination of the first and third with the companies that make the money providing the ego to the perpetraitors......
Posts: 1184 | From north america | Registered: Feb 2003
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quote:Originally posted by david1097: There has been a lot said about the influence of insurance companies, but in fact it may be the drug companies that are behind the whole... "no, bacteria can't cause this or that"....thing. I have often wondered why the drug comapnies are very quiet on the Lyme and associated diseases front. This may be the reason.
I am not saying that this is true but it sure makes one think about it given the past history with a much easier to prove and study organism.
Forgot to mention ... It is real interesting that these same guys where the guys working with big pharma on the vacine....
Yes, very interesting. There would be a loss of alot of revenue for many drs, but they could regain that by changing their specialty to Lyme Disease Specialist!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Is long term antibiotic treatment for Lyme disease in the textbooks? No. Is it presented at conferences for doctors to learn about? Yes. At least for those doctors who are open to learning.
They are more closed minded than any group I've ever known about.
Great letter, timaca!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Can someone provide me with a physcical street address for Dr. Wormser and his group? Also his superiors at the hospital?
Thanks.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Sorry Areneli, but your suggestion sounds like hatemongering to me. There are people of every religious and ethnic background fighting hard on both sides of this battle. And for the record, NY Medical College is affiliated with the Catholic Church. (Is it all the Pope's fault?)
Please let's stick to the issues and unite as patients against those who are trying to do us harm.
Posts: 621 | From US | Registered: Jun 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I hope everyone registers on that site and writes letters- it won't let me register and THAT is making me feel paranoid like they purposely deactivated the registration process when in truth, my computer sucks and it is probably me*)!
My doc, the best LLMD in the country next to BUrrascano, is Jewish, so that weird Jewish conspiracy thread that almost started here doesn't make any sense Areneli. Not that it would anyway, but just to give you something within your frame of reference!!!!!!!!!!!! ANd the hypothetical Jewish Lyme Cabal also infected my kid who identifies as Jewish and is the last of the Viennese Weiss family (her paternal grandparents & great grandparents and everyone else were all murdered in concentration camps). THEN AGAIN< she is in remission*)!*)! Part of the conspiracy>?
I also had IDSA and then ILADS!!! I was treated with a month and ALMOST recovered and was then told I had (don't laugh- okay, go ahead, laugh!)
"a progressive multi-system neurological disease triggered by Post-Lyme Syndrome"
(in other words, chronic Lyme disease)
I then got bedbound and they let me suffer and suffer and finally I found my wonderful Jewish LLMD who doesn't even have Lyme- he is just a Saint- an angel- a Jewish angel- gave me 9 months of IV Rocephin and voila!!! Life.
LIFE LIFE LIFE!!!!!!!!!!!!!!!
@*&(#^#@ Wormser!
-------------------- 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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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. WOw!!! Just thinking about it- you got it backwards Areneli- because the LLMD I see now (because I just need maintenance abx and he is closer tha my old one) is ALSO JEWISH!!!!!!!!!!!!!! SO maybe Jewish people are truly our saviors, eh>?*)! I think so*)!
-------------------- 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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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by ldfighter: Sorry Areneli, but your suggestion sounds like hatemongering to me. There are people of every religious and ethnic background fighting hard on both sides of this battle. And for the record, NY Medical College is affiliated with the Catholic Church. (Is it all the Pope's fault?)
Please let's stick to the issues and unite as patients against those who are trying to do us harm.
Thank you, ldfighter!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Compassion for others is a common thread in ALL religions.
In my opinion Ira's comment about lyme patients being "misguided" did not reflect compassion for others. To me, that sounds like a "put down".
It made me very angry.
It is also, I believe, not compassionate to refuse to give antibiotics which clearly help with the pain of lyme disease WITHOUT offering alternative pain relief for the tremendous inflammation or other treatment options.
$$$Humira or any of the other "autoimmune" drugs?
ONLY ticks can transmit lyme? What about breast milk?
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Wish you would post directly to the article...on the real science of Bb mutations and add the references...would show how smart we are out here in lyme world...we understand the science and read the studies...
-------------------- We are spiritual beings on a human journey...
quote: That sad thing about men like this is that he will never apoligize even when the day comes to admit he has stood between people and their treatment.
So true, Pride may be the root of all evil. I think the main reason there is so much controversy concerning chronic Lyme is that Steere couldn't admit he and his studies were terribly wrong.
I have always thought the main reason for no long term abx wasn't the insurance costs. It was the fact that the mainstream docs are so worried about "superbugs" being created. Like a previous poster said sacrifice the Lyme suffers for the rest of us.
Posts: 649 | From United States | Registered: Dec 2003
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I wonder how he would like another protest?
Keep it up Wormser! Posts: 1603 | From ny | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Areneli:
Bigotry and racism has no place on the Lymenet forum. Nor will appealing to people's worst fears and crudest instincts lead to an answer as to why the IDSA ignores the peer-reviewed articles and medical evidence on both the persistence and proper treatment of lyme disease.
I would be happy if the moderators would step in, delete your inflammatory and prejudicial post. This is such a great community, and it is important to have some standards of decency in our communications -- I would draw the line at racism and hatemongering.
We are here to help each other heal, not malign each other and Lymenet. After months of being helped by the lymenet forum, I am shocked to find a racist post here on this forum! Which is sure to give comfort to the IDSA scientists, who can again dismiss lyme patients as irrational and ignorant sick people.
Posts: 2557 | From home | Registered: Aug 2006
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quote:Originally posted by tothepoorhouse: And excuse me, I think we have, with all of our experiences with lyme and/or co-infections, proven that the "superbug" already exists!!
And it's name is TICK and the bacteria it transmits, which is being transmitted by many means, including the blood supply through the population.
You got it!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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If you have a website designated to Lyme or Lyme causes, please consider linking to the PHA website. The more places we can get the news out there the better!
Also, if you know of any support groups, doctors offices, etc that would like to put the PHA in their offices, or pass out to support groups, etc...health fairs....ANYWHERE....
We will send you bulk copies for ONLY the cost of the postage (as long as supplies last!) The paper is free, you just pay for the postage to get it to you!
go to the above link and fill out your request for bulk papers. You can get a box of 70 papers for the postage cost of $10 mailed anywhere in the USA.
Someone suggested we get people to sponsor the $10 postage fee to mail a box to specific IDSA doctors! I'll do it if you can cover the postage fees! Just pick a doc, send me the complete mailing address and paypal me the postage money and I will drop in the mail! (That would be fun wouldn't it! LOL!)
Please continue to link to the PHA website www.publichealthalert.org and have friends and family visit the website!
ALso, if you know anyone who would benefit from advertising in the PHA, send them our way!
Many Thanks for all the support! Dawn Irons , Editor
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
whoever started this post, please post my edited version of what the article is about in your TOP post so folks can read it, read other responses, and then send their comments to! thanks .
i couldn't read this on line; too small of print; barely legible so bringing it here.... ***********************************
Guidelines present a rational approach to Lyme disease By GARY P. WORMSER, M.D.
(Original publication: December 9, 2006)
Editor: This reply is also signed by Drs. Robert Nadelman and Raymond Dattwyler, both of Westchester Medical Center and New York Medical Center.
While we respect the right of individuals to express their feelings regarding the Infectious Diseases Society of America's Lyme disease guidelines that were published Nov. 1, we are concerned about personal attacks and misrepresentations (Dec. 1 news article about protest outside Westchester Medical Center).
The Infectious Diseases Society of America has more than 8,000 members and is the largest professional society of its kind in the United States.
It issues guidelines that are intended to improve the care of patients. Its guidelines are voluntary.
They are not intended to replace a physician's judgment, but they are intended to help doctors and patients make good decisions based on the best available science .
The guidelines were based on an exhaustive review of the published medical literature on the clinical assessment, treatment and prevention of Lyme disease in the U.S.
The 14-member panel drew upon experts in adult and pediatric infectious diseases, neurology, rheumatology, immunology and entomology, from 10 leading medical centers and universities in three countries.
We three physician researchers from New York Medical College and Westchester Medical Center have had collectively more than 70 years of clinical experience in the care of Lyme disease patients and have performed numerous research studies on Lyme disease.
One of us, Dr. Dattwyler, was also the director of the Stony Brook Lyme Disease Center for more than 20 years.
The IDSA guidelines recommend against treating patients with Lyme disease with prolonged courses of antibiotics, meaning many months to years of therapy. This recommendation is neither new nor unique to IDSA.
No mainstream medical group or authoritative source has ever advocated such prolonged therapy:
not the IDSA in the prior Lyme disease guidelines published in 2000; not the American Academy of Pediatrics; not the American College of Physicians; not the Medical Letter,
not the Centers for Disease Control and Prevention, nor the National Institutes of Health; not any of the leading textbooks of internal medicine or infectious diseases;
and not review articles in major medical journals such as the New England Journal of Medicine.
The updated Lyme disease guidelines document exactly why prolonged treatment courses are not scientifically justified and why such prolonged therapies pose serious health risks to the individual receiving them,
including even death, and to society at large through the emergence of antibiotic-resistant "superbugs."
The new guidelines discuss in detail major flaws in all the studies that have been cited to justify prolonged treatment.
The IDSA Lyme guidelines also cite numerous studies that have shown that the majority of patients who receive the diagnosis of "chronic Lyme disease" have never in fact had Lyme disease at any point .
In one of these studies, more than 50 percent of the misdiagnosed patients had other treatable medical disorders.
These findings are completely consistent with our own clinical experience at the Lyme Disease Practice of the Westchester Medical Center.
We encourage anyone who is diagnosed with so-called "chronic Lyme disease" to get a second opinion.
We strongly advise that people with Lyme disease avoid long-term antibiotic treatment, which is ineffective, costly and potentially very dangerous. We recommended this in 2000, and the evidence in support of this recommendation is even more compelling in 2006.
IDSA members have been at the forefront of preventing and treating Lyme disease.
Our singular mission is to find out what is best for patients.
IDSA believes that the Lyme disease guidelines represent the best that science has to offer.
For reliable, scientific-based information on Lyme disease, we would direct your readers to sources such as the Web sites of the:
* American College of Physicians (www.acponline.org)
* and the U.S. Centers for Disease Control
* and Prevention (www.cdc.gov),
* as well as that of IDSA (www.idsociety.org).
\ Wormser is chief of Infectious Diseases, professor of medicine, Westchester Medical Center and New York Medical College.
Nadelman is attending physician, professor of medicine, Infectious Diseases, Westchester Medical Center and New York Medical College.
Dattwyler is chief of Allergy, Immunology and Rheumatology and professor of medicine, Westchester Medical Center and New York Medical College.
******************* boy, was this a hard one to edit and not comment on every misguided word he states above!
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You stated these guidelines are to be the best and improve care for lyme patients, and the guidelines are voluntary. Too bad you didn't get that information to the health insurance companies who are refusing CHRONIC lyme patients reimbursements for treatments done to help them.
You stated these are NOT to replace our treating physician's clinical judgment. I totally agree, our treating PCP or our CHRONIC LYME LITERATE MD's clinical judgment should be accepted since they are physically treating us.
It's so strange that 14 IDSA created these updated rules; 5 treat for lyme disease, but of the EARLY-ONSET lyme only; NOT ONE TREATS CHRONIC LYME PATIENTS!
That personally is a slap in the face to me; a chronic lyme patient of 36+ years; 34 years misdiagnosed by between 40-50 MDs/specialists, etc. on my quest to get a CORRECT diagnosis and begin treatment.
I was on long-term antibiotics for 20 months. I have improved, but not to the point of being in REMISSION! God only knows how much I want to reach that stage and be able to enjoy life with my beloved husband of 32 years, who has NEVER known me healthy during our entire marriage.
Sorry, but I do NOT believe these were created after exhausting all the scientific evidence available! You picked and chose not reading or including any of the CHRONIC LYME PUBLISHED scientific literature by the ILDS, Intl. Lyme Disease Society MDs!
I find it interesting you 3 have 70 years of clinical experience but NONE for chronic lyme patients, who in your minds, do NOT exist.
You also stated about all the studies you have done. Yes, it's amazing that of 14 IDSA MDs who updated these lyme guidelines, that at least 11 if not all 14 get regular GRANT MONEY for lyme research; none of it for CHRONIC LYME! Where is the justice there? Certainly is NOT in the best interest of chronic lyme patients hoping to go into remission; is it? NOPE!
As stated above, I have around 40-50 SECOND OPINIONS over my quest of 36 years to find out what illness I have, and to get it treated appropriately. I was passed by one NON-LITERATE LYME MD to another.
I was showing all the classical symptoms of early-onset Alzheimer's disease. I knew them only too well! My young sister-in-law, died at age 40; yes 40, of AD after spending 16 months in a nursing home! She had AD between 8-14 years and was treated only for severe depression. Mayo Clinic, Minn., did a biopsy of her brain, and determined it was early onset AD!
So I was going to pursue AD until I heard about chronic lyme disease and a special blood test I could get: western blot IgM and IgG performed by Igenex lab in Palo Alto, California. Both IgM and IgG were positive to meet CDC's positive criteria.
So it's official! I meet CDC's positives to be counted as an official chronic lyme patient in Iowa in 2004! Many meet IGX's positive criteria, but not CDC positive criteria, and are NOT counted! NOT RIGHT.
It is NOT in the best interest of the CHRONIC lyme patient to not believe we do not exist according to your misguided criteria. You stated your mission was to find out what is best for the patient.
ACKNOWLEDGNG CHRONIC LYME EXISTS is the best for us long-term patients.
Your article showed 4 reputable lyme websites, but where was the LDA, LYME DISEASE ASSOCIATION, or the LDF, LYME DISEASE FOUNDATION, in your ``reputable'' sites; shame on you 3 and the other 11 who were not thinking (was it ``fuzzy numbers'' as Pres. George W. Bush states?) when you updated the 2006 lyme treatment IDSA guidelines. BettyG
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by Vermont_Lymie: Hi Areneli:
Bigotry and racism has no place on the Lymenet forum. Nor will appealing to people's worst fears and crudest instincts lead to an answer as to why the IDSA ignores the peer-reviewed articles and medical evidence on both the persistence and proper treatment of lyme disease.
I would be happy if the moderators would step in, delete your inflammatory and prejudicial post. This is such a great community, and it is important to have some standards of decency in our communications -- I would draw the line at racism and hatemongering.
We are here to help each other heal, not malign each other and Lymenet. After months of being helped by the lymenet forum, I am shocked to find a racist post here on this forum! Which is sure to give comfort to the IDSA scientists, who can again dismiss lyme patients as irrational and ignorant sick people.
Well said. I'm speechless & profoundly saddened to find this on Lymenet.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Cobweb
Unregistered
posted
"These findings are completely consistent with our own clinical experience at the Lyme Disease Practice of the Westchester Medical Center. We encourage anyone who is diagnosed with so-called "chronic Lyme disease" to get a second opinion. We strongly advise that people with Lyme disease avoid long-term antibiotic treatment, which is ineffective, costly and potentially very dangerous. We recommended this in 2000, and the evidence in support of this recommendation is even more compelling in 2006." from Wormser's rebuttal.
Okay- so I would like to hear from all these incredibly fortunate patients who have been treated for Lyme Disease at the Lyme Disease Practice of Westchester Medical Center. Any chance they are willing to speak up for the Worm to prove his statement? Of course it should also be followed up with how many of them are now making the rounds of Specialists-since Lyme is no longer their problem.
BTW I was screwed by the previous guidelines-so I just shudder to think of the apocolypse caused by the 2006 guidelines.
So please-will any of Wormser's patients who are NOT seeing any other specialists since being discharged from his Lyme Disease Practice speak up in his defense. Yoo Hoo where are you? My guess if you got sick again you were told it was a reinfection and not a relapse-since relapse is not in his vocabulary.
Wouldn't it be fascinating to see what would happen if we all went to his practice for a second opinion? Then we could all be so delighted by the fact we don't have Chronic Lyme we could go volunteeer to give blood at the Medical Center and tell them it's okay-Wormser himself has cleared us of any Chronic Lyme.
I suppose we would just be diagnosed with Post Lyme Disease -then he could send us to all his buddy specialists -wonder if there's a kickback on referrels?
I think I will pass on my own suggestion to go to him for a second opinion. I want to get better, I want to get well.
Gives me an idea- where's the closest Red Cross Center in Westchester-let's go there with a copy of the guidelines and tell them that they don't have to wait a year to take our blood-we've had three weeks of antibiotics so we're clear- and they don't know what their talking about making us wait a year.
By the way- who does write the Red Cross guidelines? and where the heck do they get their evidence for denying Lyme patients the ability to give blood?
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I got your messages. It seems that I was well off in my probing and we are not going in that direction.
Thanks to all of you who responded.
[ 11. December 2006, 03:01 PM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
david1097 wrote; "FOLLOW THE MONEY TRAIL. People work on three things. Money, Sex ,Ego.
You can be sure that one of those three is behind the problem... given the profiles that are on the net, I would say it is a combination of the first and third with the companies that make the money providing the ego to the perpetraitors...... "
LOL, you sure got that right... and when any one of those desires is obsessively pursued without a trace of conscience I think it's called sociopathy...
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
Also, I'm thinking of all the money every branch of medicine makes trying to treat us and our many symptoms. We are a huge moneymaker. When I think of all the hundreds of medical people I went to trying to figure out what was going on. My gosh.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
This is like Bush saying, "Stay The Course."
It is like Bush saying, "We have the best minds in my cabinet, and they all agree."
Wormser's panel was handpicked. The ILDA is ingrown.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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bettyg
Unregistered
posted
ccat or david, would you post the article you referred to here? i tried, but couldn't see a thing; thanks so much!
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by caat: david1097 wrote; "FOLLOW THE MONEY TRAIL. People work on three things. Money, Sex ,Ego.
...........and if you've ever seen a picture of Wormser, you can leave out the sex part.
Superbugs ? Half of these clowns are wedded to the biowarfare establishment. Their purposely creating SUPERBUGS !
So called superbugs are created by UNDERTREATMENT not OVERTREATMENT ! The IDSA treats for 3 weeks, tops, and of course, everyone they treat is still infected so they're the one's creating superbugs.
Uh, earth to Wormser ? Remember how AIDS patients were treated in the 80's ? See how their treated now ?
Do you really think that hundreds of thousands of people are going to live shortened, excrutiatingly painful, handicapped, family and economically destroyed lives because you're an idiot, insurance/pharma shill, coverup artist for governmental manipulation of Bb ?
AIDS patients didn't tolerate it and either are we. See, we have two things on our side. Passion and truth. Historically, passion and truth win. Deception, egotism and the pursuit of money win for a while. But, only a while.
Get used to writing rebuttal letters. Hell, you better hire a publicist because we're not going away.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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