-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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sometimesdilly
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posted
mine too.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
close the link & reload it in your browser!
-------------------- 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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Tincup
Honored Contributor (10K+ posts)
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posted
The CDC is now discounting all IGM's that are positive if the test was done AFTER the first 30 days.
I heard this a while back and couldn't believe it.
First their ELISA has too many false positives... and can't be trusted...
Now all IgM's are all false-positives after the FIRST 30 days.
Someone is trying to slow down the growing numbers by throwing out the positive tests...
And save their butts from legal cases for misdiagnosis.
sometimesdilly
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posted
the first time a panel member has said she agreed with a presenter. and it is with this person??
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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northstar
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Member # 7911
posted
probability from 0-0.8 (where 0.8 is em): what are the criteria? not listed or mentioned
and what about the JHopkins study?
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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sometimesdilly
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posted
"studying somehting that is thought to be rare, then you cna't have robust numbers of partipants for studies"
omg
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
parsonnet of panel says.....he has seen many pts this summer that did not have (bulls eye) rash, but clearly had Lyme.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Next up...
David Volkman, MD, Nissequogue, NY
David Volkman, a distinguished Ph.D., M.D., Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook who is Board certified in Immunology, Diagnostic Laboratory Immunology, and Internal Medicine.
He will go over about 6 points and tell what we know and what we don't.. showing the evidence is NOT in to prove there is no such thing as chronic Lyme.
And that IDIOT one-pill cures Lyme theory.. he will kick butt on that... one of MY personal "beefs".
sometimesdilly
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posted
says dr steere can help her remember exactly about numbers of asymptomatic seropositivity..
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
those that "some people contend have encephalitis" and by IDSA definition have late Lyme, WILL test positive.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
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posted
Can SOMEONE ask Johnson where she gets her info?
sometimesdilly
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posted
anyone else notice that the panel is obviously more comfortable with this lady than anyone else so far, more deferential, the most questions of a presneter yet.
suggests institional group think may rule here
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
yea,
they tried to give me that bullSh** that my CDC test was a FALSE positive.
i could tune it but i would get really aggrevated.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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sometimesdilly
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posted
dr. david volkman of suny, by phone
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
specific rebuttals to specific aspects of guidelines including persistence, serology, tx
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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dmc
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posted
Is there something wrong with Dr. Volkman?
He slurs his words.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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sometimesdilly
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posted
too close to mike/phone, bad connection
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
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posted
80 percent of mice still infected after treatment.
sometimesdilly
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posted
"optimal therapy for disseminated persistent infection has not yet been determined"
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
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posted
Dr. Volkman is very ill, but he wanted to help by providing his expert opinion.
His work, studies, etc and his documentation (written testimony) is untouchable and very good.
sometimesdilly
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posted
infection cannot be established by serology alone (in late stage, even after tx)
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
tx for clarification, TC.
what incredible human beings are here today- thank you so much, DR. Volkman
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
negative elisa does not rule out infection
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Prayer said for Dr.Volkman.
-------------------- 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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sometimesdilly
Frequent Contributor (1K+ posts)
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posted
SERO-NEG LYME DISEASE"
history of em chronic sympotoms, early tx, neg elisa, positive T-cell response to Bb
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD Ben Luft, MD, The State University of New York, Stony Brook, NY Allison Delong, MS, ILADS & The Center for Statistical Sciences, Brown University, Providence, RI Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO David Volkman, MD, Nissequogue, NY Sam Donta, MD, Falmouth, MA Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT Brian Fallon, MD, Columbia University Medical Center, New York, NY Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY Ken Liegner, MD, ILADS, Armonk, NY Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA Steven Phillips, MD, ILADS, Wilton, CT Arthur Weinstein, MD, Washington Hospital Center, Washington, DC Raphael Stricker, MD, ILADS, San Francisco, CA Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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sometimesdilly
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posted
if i understand--
T- cell pretty good for diagnosis, but not currently a viable commercial option?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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sometimesdilly
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posted
1. should NEVER be used clinically. 2. misses acute infection 3, failure to meet definition does NOT mean lack of infection
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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northstar
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posted
azithromycin is looking to be deleterious....uh oh.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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sometimesdilly
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posted
single dose doxy- DOES NOT WORK AS PROACTIVE MEASURE. INEFFECTIVE AND WORSE
IS ineffective, blocks seropost, but does not tx disease in 87% of cases
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
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posted
Gotta smile at the Navy uniform... hope he comes through and LISTENS.
sometimesdilly
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posted
Lantos- how do we decide who does NOT have Lyme, of labs can't be trusted?
can't hear answer well.
Lantos- test of persistence , Bb in joints. compares to studies that bacteria may be present post treatment but is NOT still an infectious agent
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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1st question from Duray that i've seen. he says, should we nix the one doxy pill notion?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
lunch break
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
lunch break til 12 thirty. anyone know if transcripts will be available anywhere?
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Melanie Reber
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posted
(Feed only returned for Johnson's summary)
6 Misconceptions are being shown... 4- IgM serology should be reserved for suspected early disseminated disease, 5- issues with 'gold-standard' serum samples for testing, 6- predictive values of non-specific vs objective symptoms. She summerizes that the misdiagnosis of Bb is prevalent and CDC continues to recommend 2-tiered approach.
Questions from the panel included: Using a TB analogy, re: testing and pre-testing probability, would state health departments recommend doing their own testing vs sending to CDC? Are there more criteria to base sample findings on besides limited ELISA results? Can you make comments on other testing modalities? Should there be reconsideration as to size of EM rash criteria? Compare rates of asymptomatic serology results with chronic serology results? Given that LD is spreading, what are the CDC means of monitoring reported cases?
Up next is Dr. Volkman via phone who presented on 'Lyme Realities'. Persistence of Bb DNA in mice, dogs and humans have been found despite antibiotic treatment. Bb was compared to Neuro-syphilis with testing comparisons of PCR and DNA and in treating options. Antibody band 31 reactivity was looked at in all stages of Bb development without treatment to show decreasing antibody reactions. Borrelia strains were then compared re: antibody test reactions. He concludes that despite objective patient symptoms, current suggested serology has limiting factors in determining infection. He favors T cell response as an indicator of infection and touches on the problem with the CDC 'Surveillance Case' definition for Lyme being used as diagnostic criteria. Volkman asks that IDSA guideline prophylaxis of single dose Doxy be immediately withdrawn and explains why. (it is impossible to read the entire PP screen due to the IDSA title block on the video)
Questions from the panel included: How do we exclude any case of LD based on testing now available? Do we know of any correlation on joint fluid serum stats? Is your material sufficient to advise the block of 1-2 tablet treating methods?
Break for lunch...
Posts: 7052 | From Colorado | Registered: Mar 2003
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sizzled
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posted
Volkmann rocked!
Posts: 4258 | From over there | Registered: Jul 2001
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sizzled
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posted
Blew the 'One dose Doxy.." out of the water!!
Posts: 4258 | From over there | Registered: Jul 2001
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sizzled
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posted
Supported 'Chronic persistent Lyme disease' evidence.
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Tincup
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posted
Thanks for the sum-up of Volkman's presentation.
My computer crapped out after his second sentence. Naturally, his was the presentation I was most interested it! It came back just as he was closing.
My luck: It couldn't have gone out during Barbara Johnson's maddening lie-fest.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Leelee
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posted
I am too sick today to sit and watch much of this so I am extra thankful to all of you who are recapping it.
When I am better I will be able to read it.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Pinelady
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posted
Forgive me for asking-but-do the reviewers have the
evidence on paper from the lyme treating
physicians? Or are they going to be judging only by what
we have seen and heard?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Melanie Reber
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posted
Maria, it is lunch break til 12:30 EST. (that is TBD code for medicine break)
Shall we order pizza all around?
Posts: 7052 | From Colorado | Registered: Mar 2003
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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sometimesdilly
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posted
pine-
they have written testimony as well
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Hoosiers51
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posted
northstar,
Why did you say "azithromycin is appearing to be deleterious..."?
What was said about Zith? That is doesn't work? Did "our side" or their side say that?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Melanie Reber
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posted
Are my summaries helpful at all? I must admit my multi-tasking is extremely limited combined with being a terrible typist... should I even continue?
Posts: 7052 | From Colorado | Registered: Mar 2003
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Vermont_Lymie
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posted
Melanie,
Thanks so much for your great notes, they are really helpful summaries! Please continue for as long as you can today, and thank you for doing that.
Posts: 2557 | From home | Registered: Aug 2006
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canbravelyme
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posted
Your summaries are important; thank you!!!!!!!!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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5dana8
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Member # 7935
posted
no matter what i do can not get it to play:( this is the link i'm using ...
i have the window media player but still not luck not sure what's up
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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TerryK
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posted
One other point of Dr. DeLong - follow-up did not take into consideration the waxing and waning of symptoms.
As we all know, this is a major feature of chronic lyme disease. In my view, this makes it clear that they were not using the overall health benefit of treatment in their conclusions of the study results.
Many of her points were mentioned already but I find it amazing that the "lost to follow-up" group was added to the statistics as if their condition had worsened.
DeLong's analysis had so many points that I had not heard and don't think are generally known. VERY SIGNIFICANT in terms of the guidelines. I don't know how this information can be ignored.
We need something in writing of the salient points of her critique as a defense against the insurance companies who use these study conclusions as their basis for denial of treatment since it is at the crux of the majority of denials.
WOW!! Some very compelling evidence being presented.
Terry
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Hoosiers51
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posted
Yes, all of these are helpful. Thank you!
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