posted
Weinstein couldn't even be bothered to make a presentation?
I missed the early talks, did any other scientific presenters go without a presentation?
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sometimesdilly
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posted
1. believed initially, that Lyme was easily treated 2. arthritis symptoms easily treated. 3. symptoms easily found
4. BUT, began to think the clinical picture was more complicated.
5. saw inaccuracy of lab tests. 6. saw objective evidence of relapse, ongoing symptomatic. 7. these pts had improved from acute, still symptomatic, but no evidence of reinfection 8. science does not reinforce "postLyme syndrome" as active infection. 9. symptoms are real, wax and wane, no gender difference 10. physical and neuro complaints and spect in CFS and Lyme are very similiar 11. throws Lyme in with a basket of other chronic illnesses. 12. all should be called- dysfunctional somatic syndrome.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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dmc
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posted
He's says it is in our head...
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Who is this guy? I have never heard of him until now. Not impressed.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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sometimesdilly
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posted
psych problems are usually associated with these chronic conditions??
oh. ok. a prettified version of...we're nuts. gottit.
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Pinelady
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posted
He says we are functional psychotic syndromes.
-------------------- 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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey 5dana...
Good to see you.
He is one of the skipping and doing back flips through the cactus on a sunny day dopes.
Had his nose somewhere (won't say where) and co-authored the NEJM IDiot article.
sometimesdilly
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posted
dmc- those who get well are sane. those who don't are insane.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Pinelady
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posted
And even said we are out for financial gains.
-------------------- 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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nenet
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Member # 13174
posted
I think his plan is to treat us to 100% health with his wonderfully flippant attitude.
did he just say one of the problems is that there are "sympathetic doctors" !!!
what a a$$
-------------------- 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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sometimesdilly
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posted
blah blah blah. fancy words to say -- i rock they're nuts. i care.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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seekhelp
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posted
We're all like a Payday candy bar - nutty. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
ignoramus
I think he looks a bit like Wormy. They're two peas in a pod.
Dill - back at ya babe! Just saw that thread you posted in the other day(mine). I forgot to check the notification box. Sorry
Do you BELIEVE this guy?!!!! What GARBAGE!
-------------------- 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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Shosty
Unregistered
posted
Once again, I am disappointed in the tone of posts here on Lymenet. These responses to the hearing hurt our credibility,and are symptomatic of a dogmatic orthodoxy that is just as harmful as the one criticized.
(Melanie Reber, thanks for the objective, well-done summaries, and I hope to see them for all speakers, if you are able)
My family has been dealing with the mysteries of Lyme (and autoimmunity) for 10 years. Every speaker so far, with the exception of Snood, has had valuable things to say. Liegner mentioned that he maintained a "cordial" relationship with Wormser, despite their differences of opinion. We should maintain a similar attitude of respect, and also understand that not only do both sides agree on some things, but also that both sides say there are many things we do not know yet.
Questions that remain for me:
-since antibiotics have not cured us, should we try them again when symptoms are bad? (I personally have done years of abx)
-is the risk of side effects (mainly GI but others too) of abx worth it given the lack of adequate response?
-is our real problem autoimmunity triggered by Lyme, or Lyme itself, or something else?
-are positive effects from abx, and negative effects when off them, partly due to their anti-inflammatory effects (effect on gluatamate receptors) rather than truly from killing bacteria?
-how can we tell if we have Lyme, or lupus (in our case), CFS, fibromyalgia etc. for sure? the similarities among these disorders and Gulf War) must mean something, what?
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seekhelp
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posted
Did he say he's a psychiatrist? I think I missed that.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sometimesdilly
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posted
carol baker is saying.. most of us agree there is post active infection syndrome..
he responses- these patients have been nuts since they were teens,often, so what does it matter where they say the symptoms are, or what they are?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
Somatic complaint history starts in childhood & triggers post Tx complaints. WHAT?!!!!!
jerk
-------------------- 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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Wow, is this guy an idiot!
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Shosty, you are very accurate and perfect questions.
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sometimesdilly
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posted
baker says- why aren't steroid used for post infection inflammation??
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Pinelady
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posted
No rheumy. He says his studies are not his. No evidence for inflammatory instance.
-------------------- 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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AliG
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posted
No seek - Rheumie who thinks he knows psych. don't ya love that?
-------------------- 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
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posted
STRICKER now
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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TerryK
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posted
Good synopsis sometimesdilly - on the last one I think it was functional somatic syndrome. Lyme disease is listed here in this paper on functional somatic syndrome.
Stricker up now.
Posts: 6286 | From Oregon | Registered: Jan 2006
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springshowers
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Member # 19863
posted
Hello All.
How do you all think this is going so far. I missed the whole first part. >Just too sick to get up.. How Ironic.
Let me know what you are thinking?
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by Shosty: -are positive effects from abx, and negative effects when off them, partly due to their anti-inflammatory effects (effect on gluatamate receptors) rather than truly from killing bacteria?
Phillips addressed this. No - cited improvements seen with non-anti-inflammatory abx in study.
-------------------- 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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5dana8
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posted
dilly si strickler is a good guy fro us now?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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sometimesdilly
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posted
brain compensation strategies failing. sounder ears and brains, please summarize...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Melanie Reber
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posted
Sorry folks, I am fading out... that's it from me.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Controlling immunoassay test kits. Shows poor agreement. None reliable. 337 European labs show high variability. Urgent need. OK he is on it. Sensitivity is horrible. All his evidence presented as conducted after 93.
-------------------- 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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northstar
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posted
Re: weinstein: that is the biggest "diagnostic" garbage can I have ever heard of. We're all alike...ibs, fms, etc. My brain has ibs? Of course they cannot find source of inflammation since they failed to read McKlossy and McGeer studies, and idsa fails to acknowledge the existance of cysts/blebs. If you refuse to look at it, you cant find it. Sort of like their ignoring the role of bartonella.
I am really not impressed with their methodological science, logic, and scientific philosophy.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Ocean
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Member # 3496
posted
Shosty,
I think that many are offended to be told it is "all in your head" which Dr. W basically just stated.
We all know these doctors are hurting our chances of getting well by approving IDSA guidelines.
I'm glad that Dr. L is 'cordial' to Dr. Shapiro, but with all due respect...he hasn't lost nearly a decade and a half of his life from this disease.
I am sure he feels awful for his patients, but it's a WHOLE new ballgame to suffer day after day, week after week, month after month, year after year from Lyme.
I highly doubt any highly credible physican will get on here and read these comments, I don't see how writing our opinions will serve to hurt our cause.
It's us wanting the 'good guys' to win. Surely anyone can understand that.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
danan- yes, sweets.
as for those who are trying to divert our attention and argue on this day- wait for another time. i aint listening,and hopefully noone else is either.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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5dana8
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posted
wow these tesitng diagrams are complex can the panlaist follow most of these complex graphs abuot testing?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Well at least he is showing the differences. Wheres N. Harris?
-------------------- 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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sometimesdilly
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posted
anyone else getting heartily sick of the word ROBUST?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dr. Stricker is the past President of ILADS and is very active in the community.
He had a debate with IDiot Auwaerter from Ho Ho Hopkins in the past and has been on top of the research and publishing for years.
posted
Who holds the patent on the 2-tier testing?
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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sutherngrl
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posted
Pab, I would love to know the answer to that.
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5dana8
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Member # 7935
posted
me too
Tin ~ is Dr. Stricker diong good job explainging testing & treeatment?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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sometimesdilly
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posted
explicating stealth pathology that causes persistence.
"highly plausible that persistent infection exists."
going after the guidelines' script for length of tx. says even existign studies don't support the short length of tx recomommended by IDSA
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Pinelady
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posted
OK he says you cannot say it is geograpically relevant where you got bit. We don't have it here is kaboom. Shows a number of mechansims of persistance. As documents in numerous cases. And highly likely. Yes he has blown it out of the water.
-------------------- 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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sometimesdilly
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posted
going after wormsters' 10 day tx shuffle. demonstrates is flawed interpret by worm
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sometimesdilly
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posted
addressing safety of iv's-- 366 patients, less than 2 percent adverse events for all
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springshowers
Frequent Contributor (1K+ posts)
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posted
That was a good point. IV treatment complications are no different when using placebo!
Good Point to make.!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Shosty...
You said..
"Once again, I am disappointed in the tone of posts here on Lymenet. These responses to the hearing hurt our credibility,and are symptomatic of a dogmatic orthodoxy that is just as harmful as the one criticized"... blah blah blah.
With all due respect, when you walk into a dog fight, you MIGHT have to hear some barking. If you object.. there are other places to be.
CALDA has a twitter and chitter if you prefer...
Or you can sit their on your high horse and whine... but I still think these idiots are toads and I'm gonna keep saying it over and over.
Why?
Because for 15 years we were all nice and polite and it got us NO WHERE!
Less than no where.
Not till we became a "small but vocal group" (IDSA's own words for us)... did we start getting listened to.
Do you really think if we weren't out there kicking down doors like we are.. in the tone that we use.. things would be moving forward?
History says no.
Do you think the quiet voice in the corner will be the one that is heard and makes changes?
It never worked before.
Do I like doing this?
ABSOLUTELY NOT!
But until we raised a vocal ruckus.. NO ONE LISTENED!!!
sometimesdilly
Frequent Contributor (1K+ posts)
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posted
laying out just where the idsa was wrong or misreprented in guidelines.'
SCIENCE DOES NOT SUPPORT...is his refrain
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Pinelady
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posted
Science does not support the guidelines
-------------------- 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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posted
TY Tincup!
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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sometimesdilly
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posted
Q- What is clinical judgment for Lyme?
A- real labs exist with real results, new tests coming along, clinical context...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
He says other labs can do a great job but would not name them.
-------------------- 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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posted
Ok, I'm a bit late, but for the guy who claims it is somatoform disorder-
Shouldn't CFIDS/FMS people be protesting that as well?
Many Lyme patients have a previous diagnosis with CFIDS/FMS, even MS
If Lyme patients all have somatoform disorder, isn't he also implying that most CFIDS/FMS patients do as well?
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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Pinelady
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Member # 18524
posted
OMgoodness He just told them the approved tesing has not been changed since. 1997
-------------------- 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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sometimesdilly
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posted
sanders is looking pretty pooped
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
well,duh.no iv lines, no iv complications..
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sometimesdilly
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posted
screw baker. chastising stricker for not having the best map.. she says maybe the CDC will have the better map.
yuck
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Tincup
Honored Contributor (10K+ posts)
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posted
Someone asked... "Who holds the patent on the 2-tier testing?"
pab I think asked it.
I believe, don't quote me, that eight out of 11 or so IDSA guideline authors hold some sort of patent to some sort of "piece of the puzzle".
The tests are done by bits and pieces, sold, traded, etc... so ducks and their institutions have interests.
I'd have to look through my notes to find out and sort though who has what... no time now. Sorry.
The Worm is on!
Dr. Stricker has never done a bad job as far as I know and he has been around as long as Goodyear tires.
He is probably one of the most brilliant and outspoken of the ILADS members.
NOT that the others aren't brilliant too.. but he is out there in their face more so than most.
springshowers
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posted
What time zone will this be over??
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Pinelady
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posted
Wormser says he started in 88 I guess he thinks if it aint broke dont fix it.
-------------------- 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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springshowers
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posted
What time zone will this be over??
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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sometimesdilly
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posted
comparing 2000 and 2006 guidelines
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