Tincup
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Video of Paul Auwaerter- John Hopkins, IDSA guideline author & paid consultant to MedScape
From Medscape Infectious Diseases > Auwaerter on Infectious Diseases
Politics, Sound Science, and Lyme Disease: IDSA Guidelines Upheld Paul G. Auwaerter, MD, MBA
Authors and Disclosures Posted: 06/16/2010
Hi, Paul Auwaerter video blogging today on Medscape for Infectious Disease, but I wanted to talk more politics than medicine and more public arena than science. The topic is Lyme disease and as many of you know, there are advocates who believe that so-called chronic Lyme disease is due to persistentBorrelia burgdorferi infection.[1] Advocates of this position think that long-term or combination antibiotic strategies are needed to effect cures for conditions that might be explained by chronic Lyme disease, such as persistent fatigue, musculoskeletal aches, and a variety of other maladies.
The turn to political theater came about more than 2 years ago, when Connecticut Attorney General Blumenthal, who is currently running for senator for the state of Connecticut, decided to investigate the Infectious Diseases Society of America who had put forth guideline recommendations in 2006 on Lyme disease and other tick-borne infections within the United States.[2] Blumenthal alleged that there were conflicts of interest and anti-trust violations. Due to significant legal costs, the Professional Society of the Infectious Disease Society of America elected to settle this. The mode that was selected and mutually agreed upon was an independent commission that would review these guidelines.
In April this independent commission voted unanimously to uphold the 2006 recommendations; this was important for many reasons. First, the panel upheld the general recommendations in the sound science, which was based on more than 1000 citations that were listed in the final report. Probably more significant is the fact that sound science was again examined and upheld as the basis of recommendations for the care of our patients.[3]
Guidelines allow for latitude and are by no means iron-clad or applicable to every patient. More important is that in upholding this vote, the panel sent an important message, one that I hope the media and others will take note of. For example, fair and equal weighting is really not something that other points of view wholly deserve on their own without a sound basis. I am afraid that the media and even the Internet and other sources easily amplify information that is not very soundly reached or based or even practiced widely.
So my gravest concern is that significant resources have been diverted by both clinicians (the people who made up the guidelines) as well as others who review them. The continued vitriol (or political emphasis) that believers of chronic Lyme disease have taken to the state houses, to politicians, and others, do little to advance the cause in the long-term. I think it's important that we emphasize good and sound scientific principles. We should also try to frame and advocate for as much research as possible to try to help patients with Lyme disease or those who are afflicted by persistent problems that are not easily explained.
Lastly, especially for the infectious diseases community and/or fellows in training and others, I would love to see Lyme disease remain a good model to study and help patients. I think it is actually an interesting model for the study of a post-infectious fatigue syndrome that can resemble fibromyalgia or chronic fatigue. It would be great to get further interest in this from our young trainees and other investigators. In fact I think this would likely be the case if we could work together to achieve common goals. Thanks very much for listening.
Tricky Tickey
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I'm gagging...................
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tincup
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Oh, I forgot to mention to not read it while eating!
posted
"For example, fair and equal weighting is really not something that other points of view wholly deserve on their own without a sound basis."
Gosh. I've never heard a "scientist" claim that alternate hypotheses and evidence that contradicts the status quo do not deserve to be considered. Isn't that the basis of, well, actual science?
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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METALLlC BLUE
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Exactly Light, he acts like their isn't an abundance of evidence, which there is. I'll link it right now:
posted
The puzzle is not that there are destructive fools in medicine, it is why so-called high powered medical institutions like Hopkins hire them and retain them despite the damage they do.
Posts: 8430 | From Not available | Registered: Oct 2000
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OMG!!! He is actually one of the doctors I saw when I first got sick!! It wasn't until 7 years later that I found out I had lyme.
He diagnosed me with his so called post-infectious fatigue syndrome. Other docs said chronic fatigue syndrome. Basically they were all saying the same thing.
Anyhow...I guess I never had a snowballs chance in h*ll of finding out I had Lyme when I saw this guy!
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Tincup
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"Yet he's seemingly so convinced that he's doing the right thing."
Hey MB.. good to see you.
As for your comment... it's amazing to me how big $ can make a person act that way. We know he knows better.. heck Hopkins was sued, so he has to know better.
BTW- He was on the 2005 study from Hopkins that indicated 75% of the people with Lyme are missed using the standard lab tests.
Then a year later he is on the IDSA 2006 guidelines that recommend everyone have not one, but two positive tests before being treated!
Also nutz-o... he is on that junk article- Critical Appraisal of Chronic Lyme- both he and Dumler (both at Hopkins)...
And they.. and Wormser who came from Hopkins- can claim they didn't know that McStupid- another author on that article- was NOT from Hopkins but allowed him to be listed as such?
Hello? It states...
"Johns Hopkins Medical Institutions, Baltimore -- P. Auwaerter, J.S. Dumler;"...
Then it says... "Johns Hopkins Medical Institutions, Crofton, MD -- E. McSweegan"
The toads are supposedly smart enough to write about Lyme and complex scientific topics, but none of them is smart enough to know the place where they go to work every day is NOT located in Crofton, MD but in Baltimore?
What's up with that? Deception? Stupidity? Evil?
Or a part of a pattern?
And with the BAD reputation they have with patients in Maryland, DE, VA and PA... why don't they just get out of the Lyme business?
My guess... the $$$$$ keeps them walking this worn out walk and talking this worn out talk.
Tincup
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Sorry about that Pam... the same has happened to way too many folks here. And you are right. If you had Lyme written on your forehead they would still deny deny deny it all the way to the bank.
I have to laugh at another reaction I witnessed when someone mentioned Hopkins. It isn't funny, just that I could relate to her exactly... anyhow...
I met a woman a few weeks back and asked if I could leave some Lyme literature with her. Turns out she had chronic Lyme, her hubby did, and all 4 of her kids did too, most with coinfections.
She was telling me she was having to travel out-of-state to get help for the past 7 years.
Then she mentioned Hopkins (I'd not said a word) and then she went off into a rant about how they destroyed her life and how "everyone around here" knows how bad Hopkins is... blah blah blah. I thought she was going to spit on the ground she got so angry.
So it isn't just you... although I am sad you too were misdiagnosed and had to suffer. None of us should be subjected to that.
posted
Yeah, take THAT self-aggrandizing, close-minded, disrespectful medical opportunists.
I've read essays by sincere, respectful physicians who struggle to exit the opposing view. But not this group. What some of these people write is so rhetorically charged, and so chiding of patients, doctors, journalists, and scientists who don't agree with them, it's difficult to believe they really are sincere.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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Tincup
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Which reminds me.... I had a chance meeting with a Maryland Senator recently, totally unexpected.
He remembered me and started talking about his child having Lyme and being lucky they caught it early... and about how he was treated... then he said he had been relapsing with horrible symptoms. And guess who wouldn't treat the child?
Luckily they found help with another doctor.. and the child is coming around now with additional treatment.. but was down and out for a year over it.
Then he talked about the Maryland Lyme bills .. and HE said with a scowl...
"They didn't have enough teeth in them! We need something stronger."
So it's not just the patients... legislators are personally experiencing the problems with not enough Lyme treatment.
METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
Once TinCup gets hold of something fishy, she exposes it with facts and ensures it's heard via strong word of mouth. Take these facts Tin, and run with it:
posted
As Ray Stevens once sang, "There is none so blind as he who will not see."
I would never wish this disease on anyone, but just a taste of what our spouses, families, & friends who have been struck with this blight, would turn a few heads.
But then some dipstick would come along and show them that "consensus" says they aren't really sick.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Tincup
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Hey MB... I'm anxious to see your work.. but when I click on the link I get a page that just says....
Acrobat.com is Loading
It isn't loading unless it takes over an hour.. it just sits there. What am I doing wrong?
It took a minute or two to load on my computer... so maybe it depends on your computer and internet setup.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Tincup
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HOLY COW!!!! I am VERY impressed!!!! Almost speechless!
Thanks for the reassurance MB and Marypart.... it did work this time.
MB- can you please email me? I have a very important favor to ask dear, sweet, MB lots of ice cream coming your way. (Yes, that was my way to suck up.)
posted
I still think these guys should submit to several tick bites (because Lyme is so hard to get) and, IF they have a bullseye and, IF they're sick, get ONE doxy.
When they all get well, they'll have proven us wrong.
Posts: 921 | From CT | Registered: Apr 2009
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