Paul Auwaerter does a movie review of Under Our Skin without mentioning the name of the movie, talks about patient advocacy groups and our LLMD's... and throws in some IDSA Lyme theories as a bonus.
posted
Funny part about IDSA proponents is that they basically say " positive serology and symptoms are not due to lyme , but we dont know what the heck it is , just it is not lyme for sure!" .
I bet in many parts such entrenched opposition to Lyme recognition is due to the fact that if it is recognized, IDSA panelist and doctors following their guidelines would look like incompetent preposterous ignoramuses .And we cant have that can we?
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Tincup
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On one of the videos I kept getting distracted by it and finally went back and counted the number of times he said "uh".
There were more... but in 8 minutes and 52 seconds I counted at least 146 "uh's".
They were more frequent and more rapid when he was saying stuff I know not to be true.
posted
Unfortunately unless the non-idsa speakers come in with clinical trials supporting the long term use of abx and also proof of persistence of Bb infection, the panel will come to all the same conclusions this thursday.
He is also right about under our skin, heart wrenching film work about seriously ill people, with very little science behind it.
When dealing with the IDSA simply being sick is not proof.
Does any one have a compendium of links to studies that prove persistent infection and efficacy of long term abx that the IDSA is choosing to ignore?
I really need to research this more because I did not get upset when I watch those 2 videos, Not for the reason that I do not believe in chronic persistent lyme, but simply because I have no scientific rebuttal other than a few 1000 testimonials on a bulletin board
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And the short response to the clinical trials is that the wrong antibiotics were being used for too short a time on patients who had already failed that antibiotic regimen. In spite of that, in more than one of the studies the patients improved, though were not cured.
seekhelp
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posted
Convincing videos!!
One question: WHY IN THE HELL HAVE THERE BEEN ONLY FOUR TRUE STUDIES IN 30 YEARS ON THIS DISEASE WHEN HE ADMITS 250,000 DIAGNOSED CASES IS AN UNDERESTIMATE?
I can't get over this statement. How many people total were analyzed in all four studies rolled up?
The whole thing just smells of ignorance no matter the truth at the end. I personally don't know if I believe in 'Chronic Lyme' as much as others here at times, but guys like this one just hit the wrong button.
It was comforting to hear he hopes to find the cause of our suffering. It seemed genuine. I didn't realize the quality of ILADS-referenced studies were much poorer than ISDA's. Is he saying the sources/scientists cited are suspect?
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seekhelp
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Looked at the first 70 abstracts shown in link 1. Not compelling evidence IMO. I can't see the whole articles obviously, but studies done on dogs, mice, etc....out of aspect.
Studies based on PCR testing - isn't this suspect at times? I thought there are false positives and insurance doesn't even care about a positive PCR test.
Patients continued to show antibodies on IgM .....consistent with what the IDSA presenter stated in his video.
A few did catch my eye. Some of the studies summarized a person felt bad after initial Abx treatment. The only compelling evidence must be spiroketes were actually found in cultures post-aggressive treatment. The organism itself must be somewhere!!
Thanks so much for the links.
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posted
Sorry, can't watch these. My health is too precarious.
The question in my mind is not why there are incompetent jerks in medicine, but why they have been allowed to continue to hurt people, especially at big name institutions like Hopkins.
And as for studies that refute IDSA guidelines, try looking at the studies done by some of those same jerks before 1993. They changed their tune practically overnight, the Steere overdiagnosed/overtreated article in that year was the signal that the "mainstream" did not want another chronic infectious disease, that had no cure and was expensive to treat.
The lymecryme website has some of these earlier studies. Another good website is www.lymeinfo.net
P.S. to seekhelp: Antarctica is the south pole.
[ 07-28-2009, 10:57 AM: Message edited by: lou ]
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Tincup
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lou said.. "The question in my mind is not why there are incompetent jerks in medicine, but why they have been allowed to continue to hurt people, especially at big name institutions like Hopkins."
EXACTLY!
And the funding- OUR tax payers dollars- that are wasted there on no-count studies... SHAME ON THEM!!!
I know there are decent folks coming from Hopkins....
But these toads pull all their reputations down in the mud and muck.
quote:Paul G. Auwaerter, MD, Clinical Director, Division of Infectious Diseases, Johns Hopkins University School of Medicine, Baltimore, MD Paul G. Auwaerter, MD, MBA, has disclosed no relevant financial relationships.
Dr. Auwaerter is a paid consultant to Medscape, and his participation and contributions do not constitute endorsement by The Johns Hopkins University, Hospital, or Health System.
Now if you click on the link entitled, 'Authors and Disclosures' on the individual articles, you get this info:
quote:Disclosure: Paul G. Auwaerter, MD, MBA, has disclosed the following relevant financial relationships: Served as an advisor or consultant for: Adams Pharmaceuticals; Schering-Plough Corporation
Is it that they don't consider them "relevent"?
Are there any other disclosures that anyone may be aware of that were omitted? That, IMO, has the potential to be a tad misleading.
I DO have to say that I liked the info given on the rash not necessarily being a classic bulls-eye or being confused by physicians with a spider bite. I think that was a step forward.
I'll have to watch them both again to further comment. I became bored with all the blah, blah, blah,uh, blah, uh, uh, blah, uh, blah, blah... and then got distracted.
Has he tried to say that there may be something else responsible for those lingering symptoms (coinfection or something) but they have no clue what it could be and front-line ducks interpret that as "dump the patient" when they shouldn't - OR - is he still saying "there's nothing else responsible, don't bother looking for a reason"?
The smart thing for IDSA to do at this point would be to blame "misinterpretation".
I can't believe how hard they're struggling to save face and the review is only two days away. Actually, I'm surprised they haven't taken full-page ads out & done a media blitz this week.
Anyone want to bet that the site has "technical difficulties" on the 30th?
It's funny TC, if you check out the links not pertaining to Lyme, he doesn't "uh" NEARLY as much. Perhaps it's a sensitive subject for him, poor guy.
I'm going to check this out again later when I have more time. Thanks for posting this.
...There was "a threat" of an investigation by the CT AG's office...
Did you see the fidgeting when he says "wholly baseless"?!!!!
Here's another fun thing for you to do..... Check out the rate of eye-blinking. Compare to other videos where Lyme is not the topic. Notice anything?
-------------------- 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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quote: Does any one have a compendium of links to studies that prove persistent infection and efficacy of long term abx that the IDSA is choosing to ignore?
That for part about proof of persistent infection. There is not many studies about long term abx (none? -I have no idea) and their efficacious, because no one sponsors them .All the money CDC gets never go towards research of persistent lyme ,because according to IDSA " it DOES NOT EXIST"
I do believe from what I read that there is plenty of evidence for persistence of lyme . What is there not enough is effective tests ,effective treatment and research. And there will never be any unless it is recognized.
I personally think abx are not effective - judging by how many people are not helped by them. That does not mean that they should not be used if its only relief available . There need to be search for real cure with real funding.
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TerryK
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posted
He is a terrible speaker. Mispronounces a number of words (and even seems to mispronounce Borrelia Burgdorferi) and leaves many sentences and thoughts unfinished.
Frankly he does not look well himself what with the big dark circles under his eyes and his disorganized thought processes.
Terry
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losferwrds
Unregistered
posted
I agree with Coltman, first there needs to proof of persistance in humans, this will never be achieved with antibody testing, there needs to be a pcr test that includes a component that somehow attracts spiroketes to an area for a reliable tissue sample rather the hit or miss needle in haystack approach thats currently used Persistance can be proven in the lab, but you have the luxury of completely dismantling the non human subject, unfortunately in real life a human has to die to demonsrate this.
On the subject of long term ABX, thats a tough one to argue, they are not designed for long term use, sure they can help but oral abx are definately not the way to go unless you are recently infected and even then IV should be used, IMO.
Also showing persistance unfortunately illustrate abx failure which bolsters the IDSA stance on long term use.
Unless someone comes up with a definative test, videos like this can me made, and the IDSA will win.
Thursday is gonna be a dog and pony show. Unless the non-IDSA folks have been stock piling research that no one else knows about, they will simply give their stance which they have done repeatedly over the years, and the IDSA will say prove it.
I am not sure why LLMDs patient records cannot be put into some sort of an ILADs repository and used a evidence but I imagine there is so sort of of privacy issue and also 90% are prolly not considered CDC positive.
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AliG
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quote:Originally posted by losferwrds: Does any one have a compendium of links to studies that prove persistent infection and efficacy of long term abx that the IDSA is choosing to ignore?
Check with ILADS, I believe they sent over a 1600 page compilation for the review. (not including references)
-------------------- 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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TerryK
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los wrote: I agree with Coltman, first there needs to proof of persistance in humans,
read "Cure Unknown", The CDC has tissue samples of people who were treated long term and still have spirochetes in their tissues.
nenet
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quote:Originally posted by seekhelp: Looked at the first 70 abstracts shown in link 1. Not compelling evidence IMO. I can't see the whole articles obviously, but studies done on dogs, mice, etc....out of aspect.
Studies based on PCR testing - isn't this suspect at times? I thought there are false positives and insurance doesn't even care about a positive PCR test.
Patients continued to show antibodies on IgM .....consistent with what the IDSA presenter stated in his video.
A few did catch my eye. Some of the studies summarized a person felt bad after initial Abx treatment. The only compelling evidence must be spiroketes were actually found in cultures post-aggressive treatment. The organism itself must be somewhere!!
Thanks so much for the links.
PCR is the DNA of the organism itself. Kind of impossible for a false positive.
The reason some insurance companies try to deny its importance is IDSA's *denial* that proof of infectious agent = proof of infection.
As for human studies, until we can slice and dice through an entire living human looking for spirochetes (like we can do with animal studies), we're going to have to develop better modes of finding proof of the organism.
PCR only finds DNA about 3-15% of the time (if I recall correctly). That's a lot of missed cases. Obviously, antibody tests are also faulty (large percentage again of false negatives).
posted
Why do you think we need all this additional evidence to prove persistence?
I see it the other way.
The IDSA types, without ANY evidence at all, have decided that there is no such thing as chronic infection. They have decided, and again, without any evidence, that after an arbitrary period of trx time that infection is wiped out. Poof! And after that it is a post-infection condition. In thirty years what have they produced to prove this post-infection theory? Remember, these are the people with the money, the people doing the studies, the people with the access to big labs and journal space, and what, after this many years, do they have to show for their theory?
Nothing.
On the other hand, it's been shown again and again that after 30-days of abx trx (or 60, or a year, or ... well, you pick the time!) that spirochetes persist in tissue. This is not disputed. Yet they suggest that these persisting spirochetes, along with the known co-infections, are not the cause of our illness. No, you see it's really caused by something else -- that nebulous post-infection inflammatory condition.
Okay, fine ... but tell me why? Because they say so? As far as I can see that's really all they've got. Without a foolproof test there is no way to prove the infection is gone, and therefore there is no way to support their claims. And, of course, there has been no study work on patients to back up the post-Lyme theory -- or to try and figure out what's happening, immunologically speaking, or why, or how to treat it.
What the IDSA has done, quite brilliantly in my opinion, is reframed the argument to put the weight on everyone else to prove them wrong. This is beyond insane. But they have reinforced their position by repeating the same talking points over and over and over. So much so that many on this board are repeating them. So much so that most doctors and journal editors are repeating them. So much so that most all journalists repeat them too.
But that does not make it any more true.
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Tincup
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"Frankly he does not look well himself what with the big dark circles under his eyes and his disorganized thought processes."
At first I thought he had 2 black eyes... as in being in a car accident or something.
Then I wondered if it were raccoon eyes ... like in Bartonella?
seekhelp
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posted
NMM, great points. Unfortunately, I think the American public feels ILADS is the one who needs to prove their point because handing out Abx like candy scares the public due the IDSA's public statement of superbugs.
The IDSA has carefully constructed this argument to hit the healthy community's heart. There may be truth to it and we'll all pay dearly at the end when we need an Abx to save our life. I think about this every day, but what choice do we now? For many of us, we have no lives now so....
Lastly, the IDSA has effectively portrayed chronic Lyme patients as psychotic freaks with mental issues to even more make the public despise us and think all is BS. It's a brilliant and sickening campaign. They could just as easily showed true compassion and not always play the nutso wildcard with ill people.
A billion healthy people will never care about a million Lyme patients and parents of healthy kids would always be happy to see the sick person go away rather than jeopardize their whole school, community, etc. Survival of the fittest....
I hope so much July 30th will change something. The executioner doesn't usually change their viewpoint when they are the final decision maker. I'll be interested to hear the arguments nonetheless to get a firsthand viewpoint of just how valid both ILADS and IDSA's proof/stance is. I think both organizations have lots to prove, not one isolated.
I hope to hear nothing about all this conflict of interest theories. I just want facts, facts, facts in a human application. I read too much about conspiracies. Some organization just needs to prove something once and for all.
I can't recall if Igenix is presenting. I hope so as their high amount of positive tests is the cornerstone of ILADS diagnosing Lyme to a great degree. it would be interesting to hear the lab owner rebuttal IDSA.
[ 07-28-2009, 11:47 PM: Message edited by: seekhelp ]
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