-------------------- 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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METALLlC BLUE
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posted
I heard it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
AliG
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posted
For those that pray-
Let's pray that this makes a difference for us and results in better treatment and fewer insurance hassles.
For those that "think positive thoughts"-
Let's visualize the review panel having open minds & being receptive to the information being presented.
-------------------- 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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AliG
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posted
15 minutes per patient, 20 minutes per scientific?!!!!
-------------------- 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
Tina of LEAP is on, and she ROCKS!!!!!!!!!!!!!!!!!!!
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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canbravelyme
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posted
For those of us who are having difficulty viewing the webcast, here is the direct link to the webcast:
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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sometimesdilly
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posted
Lorraine Johnson refers to the survey 3,ooo of us took! powerful stuff!
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sometimesdilly
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posted
Lorraine goes after how IDSA set up the panel and who was left out-- speaking to the panel.
telling the truth when and where it matters. she's the best.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
Dr. Cameron is on
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
(lots of visitors here on LN today.. say hi to them!)
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
Cameron- questioning the validity of existing Lyme studies, point by point, including numbers of participants
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
questioning evidence grade used by IDSA in formulating guidelines.
for shame, idsa.. and how transparent
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Abxnomore
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posted
AMAZING! We've waited so long for this day.
sometimesdilly
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posted
cameron on risks..
risks of taking abx... versus the risk of not. as we know, no comparison.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
cameron cut off when asking panel to include/allow clinical judgement at every stage in guidelines
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sometimesdilly
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posted
dr sanders on panel asks a reasonable question of cameron- explain his objections as to Lyme studies limitations..
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
dr wiliam charini- the 2rd panel member to ask-- should the guidelines be chucked altogether or just fiddled with a bit?
weird.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
sanders is obviously sharp and actually paying full attention
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
philip baker- LDF up....
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
Lyme..easily cured, says he
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
no clinical reality to chronic lyme.. no evidence of, and patients are just are...mistaken.
and, and we get "outraged" if we hear that as truth
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Vermont_Lymie
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posted
Who is this idiot Phillip Baker, and why does he deny all the ample published evidence that Bb survives the IDSA's recommended short course of antibiotics? Doesn't he read?
Posts: 2557 | From home | Registered: Aug 2006
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sometimesdilly
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posted
oh, and we "screamed for enrollment" in studies, but we couldn't get in cause....we don't have Lyme disease, according into our medical records.
most patients "claiming"to have Lyme.. don't have it, never did, or had it and it was cured.
(within 2 weeks, no doubt).
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
vermont -- of course he reads. his paychecks, at least.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Ahh. I can't watch this until tonight...but now I'm dying to see it!
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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sometimesdilly
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posted
we have common ground, he says. patients who keep complaining in some cases may actually have somehting wrong,-- auto-immune-- so OK, treat their symptoms . lyrica is ok.
onwards... those patient advocates have whined and lied before..
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AliG
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posted
Baker is an ignoramus.......IMO.
Does he have any conflicts of interest?
-------------------- 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
HELLO, fellow members of the "strident minority"
oh, and those who disagree with Them should design and do their own studies and then talk to us
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
dr lantos looks perpetually confused....
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Watching the proceedings here in Oregon...hard to believe we are actually getting to see both our fight and our views being shared in such a setting. It is indeed like watching a prayer being answered and delivered right in front of ones own eye's.
So far, the presenters have done such an excellent job of giving such detailed and fact-based information. Lorraine, bless you so much for all your hard work and information. I didn't see Tina's presentation, but hope that the proceedings are archived for later viewing.
Hope many more other lyme folks and their families will be watching and using CALDA's blog during this presentation to share their thoughts and show our solidarity. We got an answer to some of our prayers by way of this testimony today, let's make the most of the opportunity people!
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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Vermont_Lymie
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posted
Thanks dilly -- that is the point with these guys.
I am beginning to understand why so little progress has been made when you see people like Baker speaking -- he was the NIH Lyme Program Officer!
If he says, as he did, that lack of peer-reviewed studies on chronic lyme is the problem, why in the world have they not funded any well-designed studies? What hypocrites.
Posts: 2557 | From home | Registered: Aug 2006
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sometimesdilly
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posted
we don't have a precise definition of chronic lyme says baker??
didn't he just say there wasn't any such thing?
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AliG
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posted
"could never be 100% sure"
HaHa he made you say it!
-------------------- 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
Baker admits that the strident minority has asked for funds for lyme studies.. meaning, of COURSE we want the truth and know how to go about loooking for it.
caught again. what an arse
dr. medoff can look reasonable at least- hope so.
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Abxnomore
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posted
Right! We can't be 100% sure so we'll just ignore them, give the anti depressants or the wrong dx but won't ever consider a lyme dx again!
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Only good thing Baker has stated so far, is that he retired in 2007.
Posts: 208 | From Portland, OR USA | Registered: Oct 2004
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sometimesdilly
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posted
lantos tries to help baker out..
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seekhelp
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posted
4 speakers in and no scientific proof of existence yet......still waiting. The opposition's view isn't much better. Strange story.
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sometimesdilly
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posted
dr. benjamin luft, suny testifying
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cactus
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posted
Dilly - thanks for the updates on this. Watching it is out for me, but reading your updates in little snippets is great!
Just wanted to thank you for taking the time to write some notes for those of us who can't watch...
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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sometimesdilly
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posted
back to real science and reality. Bb persists. duh.
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sometimesdilly
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posted
he's very effective..understated, common sensical, unconfrontational, just matter of fact.
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Pinelady
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posted
This is all so far here say and would be dismissed. Where is the paperwork?
-------------------- 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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seekhelp
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posted
Great...looks like I'm getting what I want to hear. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Vermont_Lymie
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posted
Luft introduction:
Why are there treatment failures, and why do they fail?
Less than 10% of individuals do not respond to abx, and retreatment.
Late manifestations -- neuroboreliosis; symptoms persisted in 13-30% of patients (fatigue, malaise).
IDSA says: Retreatment is not recommended unless relapse is shown by "objective" measures.
But -- the characteristics of relapse ARE subjective.
This emphasis on "objective" vs "subjective" -- this is where Luft has a problem with the current IDSA guidelines.
The guidelines are never clear about what causes relapse and continuing symptoms.
He is pointing out the absurdity of the guidelines on this point; how the IDSA guidelines make lyme unique in all infectious diseases as it claims that continuing symptoms not caused by continuing disease.
Now he is presenting two peer-reviewed studies.
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sometimesdilly
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posted
and THAT is integrity, IDSA.
the 2 studies didn't produce the results he hoped for, but he is telling panel anyway because studies gave insights nevertheless.
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Pinelady
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posted
Zith and Amoxyl study done is 96 have relevance?
We all know these are not first line treatments.
-------------------- 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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seekhelp
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posted
I didn't know Amoxicillin is so effective!
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sometimesdilly
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posted
studies were of acute lyme, zith vs. amox
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seekhelp
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posted
Is this guy on ILADS side?
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sometimesdilly
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relapses meant patients complained most often of "subjective" symptoms, not objective.. a problem for drs.
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Vermont_Lymie
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posted
Luft: Study funded by Pfizer; double-blind study on azithromycin.
In this study, they showed amoxy superior to zithromycin. 88% of patients who received amoxy had completed response.
Partial response patients: 22% of azith; 12% of amoxy patients.
Statistically, no difference between the two groups.
Important finding -- it starts to distinguish between complete and partial response.
When one looks at serological results; ELISA test; he compared those with a positive sero response with negative sero response:
More patients with negative serological response had a PARTIAL response than those with a positive sero response:
*This shows that the immune system is working in concert with abx in effecting a complete response; this was statistically significant as well*
Patients who received zith were more likely to relapse in the course of their 6-month follow-up; but when one looked at the sero response of patients who got zith, only (50%?) were serological positive.
This speaks to the diagnostic difficulty of this disease.
Conclusion for this study: amoxy more effective here than zith.
Patients that did not develop a serological response were significantly more likely to relapse.
Symptoms were protean; what is says is that when patients relapse due to lyme they do not develop "objective" signs; they continue to complain about symptoms!
They complain about fatigue, joint pains, fevers, etc.
There is an overemphasis in guidelines on "objective" disease than the symptoms patients are actually in reality speaking of.
The physician has to take this seriously, and the guidelines should reflect that.
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Pinelady
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posted
Patients tested neg at time of relapse? Duh someone tell them the tests are soooo poor in quality.
-------------------- 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
seek- well he aint in love with the IDSA guidelines, all that matters here...
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sometimesdilly
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posted
he's dicussing persistence in mice study
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Tincup
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posted
Well, the fish weren't biting at day break.... so I thought I'd stroll on in and say hey.
Pinelady
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posted
OK we knew this animal model was coming. We cannot be compared to animals. We know that.
-------------------- 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
need a break..brain overload....back in a few
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Tincup
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posted
Actually.. that is the guy, Ben Luft, who developed the animal model and it is very good and accurate.
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Abxnomore
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posted
Luft is is good, really helping our side. Presents his research well.
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AliG
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posted
He is showing the importance of the subjective symptoms that IDSA just discards once the objective ones resolve. (not presented for the ABX comparison)
It's really disgusting, the way they completely disregard patient complaints because they can't "see" the problems. It's like all patients who say they still have symptoms are a bunch of liars.
Do they think Lyme Disease permanently damages a persons integrity? morons
I like Luft.
-------------------- 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
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posted
His conclusions show persistence in animals after treatment... over and over again.
Vermont_Lymie
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posted
A few notes on Luft's second study: checking out tigecycline; part of a larger study, sequencing genome of borrelia.
He and his colleagues noticed that there are alot of genes for efflux pumps in borrelia. Commonly found in environmental organisms.
It could be active; if you inhibited efflux pumps, doxy might be more effective.
Would tigecycline be a more efficacious drug in tx of Bb?
Tigecycline given for 10 days.
Tigecycline more effective at killing Bb (in vitro I think) than amoxy or doxy in this study. Lower MBC.
Conclusions (they are rushing him):
Persistent Bb found to be viable and transmissible! In mice after two types of abx treatment.
Although the organisms persisted, antibody levels decreased.
What we do not know: Though we do not know if this is what causes the symptoms in chronic lyme.
(My note, not Luft's comment): Now, will the IDSA ignore this evidence again??? Give this man more research funds, unlike the IDSA he appears to be an honest researcher)
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AliG
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posted
No questions for Luft because of time constraints?
-------------------- 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
Alison DeLong.. statistical reviews
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Tincup
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sometimesdilly
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posted
direct challenge to specific parts of guidelines. at last.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
delong on now .... NO evidence of anything...
biostatistician?? think she said;
whoops just read who she is .... ILADS statistician!! will have to listen to her carefully.
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Pinelady
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posted
Yes. This is what we want to see. Challenge.
-------------------- 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
on persistence... quoting fallon's "excellent" study
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sometimesdilly
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posted
knocking down baker's charge that placebos did just as well in tx
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