posted
I'd love him to borrow this from me for a month & go off the abx....When he feels like he's slowly dying then starts to come back from the edge when he goes back on the abx!
Posts: 75 | From Missouri | Registered: Apr 2009
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5dana8
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posted
wow ...piro never really answers the questions. ?
what ? so only 2 panel members where able to ask rebutle questions?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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sometimesdilly
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posted
reaching for a consensus?
patients are having problems, but ....sorry, we cannot say they are caused by active infection, but lets all say lots of time that we CARE about their sufferign.
fallon is up.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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gemofnj
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posted
i think the panel is onto his lies and crap!
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Tincup
Honored Contributor (10K+ posts)
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posted
OGGGGG..
She is thanking Sap head for feeling sorry for patients!
sometimesdilly
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posted
if effective, but carries risks, what then?
1. safer tx 2. look for biomarkers of risk 3. discuss risks vs benefits with patients
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sometimesdilly
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posted
refutes shapiro's slap at number of particpants, etc. defending study, based on facts
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Tincup
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posted
Can you call the Panel and ask them to tell Dr. Fallon to stop for a minute while I run to the ladies room?
sometimesdilly
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posted
TC-absolutely. but panel needed that reminder
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
statistical anaylsis,anyone? vermont?
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
quote:Originally posted by Tincup: OGGGGG..
She is thanking Sap head for feeling sorry for patients!
Ahhhhhhhhhh!!!!
Thanked him for expressing that. IDSA probably made him. That is the very least they could do to try to calm the furor.
-------------------- 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
fallon is addressing risks of IV's straight on.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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posted
Fallon said that there is scientific evidence showing that there are benefits to using long term abx and showing chart showing this
showing graph that shows there is a change in cognition over time. Much steeper improvement in group that used abx.(Yeah)
secondary measures of pain etc....and concludes that the higher level of pain when using drugs showed improvement vs placebo effect.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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sometimesdilly
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posted
his concern is consistnet- i heard same presentation by him in person, befire study was published.
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-------------------- worrying about tomorrow takes its strength away from today Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008
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Tincup
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sometimesdilly
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posted
ok- i get this. he is saying that study does indeed prove that a SUBJECTIVE symptom of chronic lyme was helped by LT abx.
(how could that be unless the infection wasn;t active?,or even if not, the abx HELPED. that is OBJECTIVE.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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DANA- HE'S DOING GREAT. A JUST THE FACTS MAN.
and TC- i came here in my ballgown to celebrate, hon.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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5dana8
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posted
thanks Dilly
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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sometimesdilly
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posted
heads up- losing audio. last time the whole system crashed shortly afterwards.
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sometimesdilly
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dana- Posts: 2505 | From lost in the maze | Registered: Aug 2006
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posted
says that second study at stony brook showed fatigue was better after susing CFTX vs Placebo
So, now you have another study supporting first study.
talking about unmasking now.
22% improved in drug group vs 9% of Placebo after 9mos mark
it's unreasonable to say that this information is not important.
It does not appear that drop-outs of the study skewed the results.
Careful discussion with patients when using repeated drugs, but beneficial and has helped.
Trend towards more improvement.
he is suggesting that the guidelines say that repeated abx be discussed carefully with patient.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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Pinelady
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posted
Tin how did you know. yep PJ's. Psych is doing ok. Cost benefit of repeat antibiotic trmt. not been demonstrated. but could be.
-------------------- 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
asking fallon how we treat in a particular situation. would you tx with abx? for how long?
he says if a relapse, try abx longer, or with diff abx. ((the man does not like iv's.))
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
between the lines-
yes, i absolutely believe in long term abx, but ii do also have concerns about IVs
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sometimesdilly
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posted
parsonnet- any studies of abx used for any other condition for other chronic conditions?
F: not aware, not my area of expertise.
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Pinelady
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posted
IgG vs IgM positive trial of 45 reflected nature of
common symptoms. He says it was very hard to find
that many CDC positive and will to undergo a 6 mth
trial where they may not receive trmt. I can only imagine.
-------------------- 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
fallon- only ceft and doxy have been studied in the few controlled studies.
we can't generalize about other abx from only that
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
who??
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Vermont_Lymie
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posted
Some more notes:
Shapiro: Snark: ``one of the speakers, I forget who it was, said that the sample size of the Klempner study was too small....but they had independent biostatisticians reviewing the study...''
This guy is totally unscientific. Has this guy even studied ``chronic lyme'' patients? What is this idiot basing his generalizations on? I will bet he has never even collected data on chronic lyme patients, and yet he makes many conclusions about them!
Fallon:
Is there evidence that repeated abx may be useful?
Yes, I believe that there is such evidence, and I hope to communicate that to you.
I am not an ILADS or IDSA member.
I am a psychiatrist, with a certain expertise in studying patients with ``subjective'' symptoms.
The IDSA statement that I would like to address:
The IDSA is incorrect in stating that abx treatment long-term is not useful.
Efficacy was demonstrated in Krupp's fatigue study.
She found a 3x greater response in treatment with one-month of IV treatment than those who received one month of placebo.
But, she recommended that long-term tx was not recommended due to risks.
Due to risks - how should we proceed?
- You can look for patients that might be at higher risk of side effects; - You can look for safer abx (than IV Rocephin); - Discuss benefits and risks with the patients (all treatments have some kinds of risks associated with them)
Discusses Fallon et al, Neurology 2008 study.
There is no such thing as regression away from mean; so this data is consistent with a treatment effect (for improvement of cognitive performance).
The way analysis is done is important.
We had a number of adverse event; we had 7 patients who discontinued IV treatment due to side effects.
Two patients had a thrombus; one had a staph infection; we conclude that IV is associated with significant risk and should be discussed with patient.
These patients had impairment comparable to congestive heart failure;
10 weeks of IV Ceftriaxone lead to improvements that were not sustained; long-term improvement was seen in the more impaired patients with pain and loss of function.
Discusses Krupp study:
Fatigue severity decrease among IV Ceftriaxone patients shown by primary and secondary measures (VAS is the secondary measure).
Speed of processing - not adequately measured as an intake criteria, the Krupp study cannot address this issue.
He unmasks the IDSA's ``unmasking'' critique. Conclusion: it is more likely a true treatment result, and unmasking cannot discount the results of this trial.
Conclusion: Repeated abx treatment has been found to be effective for fatigue and pain. IgG positive patients more likely to respond.
``Repeated abx treatment is effective for patients with fatigue.''
Posts: 2557 | From home | Registered: Aug 2006
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sometimesdilly
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posted
idsa guidelines made it easier to diagnose children.. (i bet it did.)
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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Ocean
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Hoosiers51
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posted
Is this making anyone else super-anxious? I can't watch anything too intense on Lyme.....it is too overwhelming for me to confront the reality of the hell that is Lyme. It's almost like I have PTSD from my first few years of Lyme hell. This is almost too much reality for me......
More power to those of you who can confront the truth so bravely.
Posts: 4590 | From Midwest | Registered: Jun 2008
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sometimesdilly
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posted
now THIS is a mindless toad.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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nenet
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Member # 13174
posted
re: EM rashes ("red rings")
"most of these are probably mosquito bites, not tick bites"
posted
Oh, who is this guy??? He wants to change the guidelines to say that most of the EMs noticed in children (in endemic areas) could be mosquito bites, not tick bites.......
Posts: 893 | From Florida | Registered: Dec 2008
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5dana8
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posted
who is this guy now dilly in beige suit?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Hoosiers51
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posted
i don't know if i'm watching the right thing....I"m seeing a woman psychologist right now
Posts: 4590 | From Midwest | Registered: Jun 2008
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sometimesdilly
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posted
unbeleivable. he would give acknowledge FEWER cases of acute Lyme, even.
god save our children.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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gemofnj
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posted
UGH gag me! was paid to be on here???
Posts: 1123 | From atlantic city, nj | Registered: May 2008
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Vermont_Lymie
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posted
This current speaker, whose name I do not have at hand, seems like a complete nut --
I believe he actually just said that a tick should be attached for at least 60-72 hours before giving any antibiotics.
Did I hear that nonsense correctly??
Tincup, I called them and requested your bathroom break Posts: 2557 | From home | Registered: Aug 2006
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sometimesdilly
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posted
coinfections-- " an emerging area of confusion among patients"
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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gemofnj
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posted
Many pediatricians are not aware of the ISDA guidelines and they are too voluminous to read...who is this guy????
Posts: 893 | From Florida | Registered: Dec 2008
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sizzled
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posted
"Grow your own dope. Plant a Shapiro." Posts: 4258 | From over there | Registered: Jul 2001
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sutherngrl
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posted
More widespread usage of the IDSA quidelines!!!! Shut up!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sutherngrl
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posted
More widespread usage of the IDSA quidelines!!!! Shut up!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Pinelady
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posted
I agree. Hand in the pocket.
-------------------- 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
this "pediatrician" is allowed to breath the same AIR as Dr. Jones???????????
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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Vermont_Lymie
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Member # 9780
posted
quote:Originally posted by jklynd: If you watch very closely,he has managed to "clone" a third arm out of his back, so he can congratulate himself.
ha! thanks for the laugh. What can you do with the current dimwit testifying?
Posts: 2557 | From home | Registered: Aug 2006
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dmc
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posted
The poor children on Long Island.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
He mentioned a young lady with several medical issues. She was sure she had lyme, he diagnosed her with severe anxiety issues and told her to quit the antiboitics and that made her very anxious.
He said it wasn't the fault of the girl or her parents, but that this notion of lyme disease.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
anxiety disorder who is this guy. When do you have vision changes and knee pain with an anxiety disorder. How sad the patients that are seeing this guy.
Posts: 488 | From NY | Registered: Oct 2004
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northstar
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Member # 7911
posted
oh see dr.zut (sp?) totally ignore bartonella in both IDSA guidelines and his "case study".
N.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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sometimesdilly
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posted
Q- under our skin brought up 1st time, congenital lyme is mentioned in film, she asks is congeniotal Lyme real?
A: NO
AAAAAAAAAAAAAAAAAAAAAAAAARCCCCCCCCHHHHHHH
LOSING IT
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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nenet
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posted
Wow, now we are resorting to an anecdote of a single patient who was "misdiagnosed" with Lyme, with knee pain, neurological symptoms, pain, fatigue...
with a *positive IgM blot*...
that he decided to diagnose instead with "Anxiety Disorder."
to try to discount Lyme diagnoses? In his opinion the Lyme diagnosis was harmful because she refuses to stop Lyme treatment and only take anti-anxiety meds, and says this is "dangerous" to her and others?
Sorry for the poor sentence structure in my notes, but his argument is beyond absurd.
gemofnj
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posted
this guy is an @$$!
holy crap! i cant believe this idiot treats children!
Posts: 1123 | From atlantic city, nj | Registered: May 2008
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Vermont_Lymie
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posted
Oh how horrible, this nut is a "pediatrician"
Parents, keep your children away from this non-doctor.
"We looked at the evidence (for lyme-induced miscarriages), and there were some initial reports, that has not been reported since. There is no evidence that I am aware of fetal loss or maternal transmission."
Oh god -- some guy on the panel thanked him for his "superior" presentation. Biased panel indeed.
Posts: 2557 | From home | Registered: Aug 2006
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sutherngrl
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posted
This is just pitiful! Poor babies!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Tincup
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posted
He is part of the Pediatric Lyme Vaccine Study Group.
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