posted
He is doing great and he makes last guy look like an idiot.
Sunil Sood is talking now, but spending all his time bragging about himself and saying that the IDSA guidelines are thorough and good and a good teaching tool. Says he sees no conflicts based on what he has researched regarding IDSA literature and the worldwide body of literature. (vomit now).
Says he sees the overtreatment of small ring rashes and they could even be a misquito bites.
Sunil Sood says that many of his colleagues don't even use the IDSA guidelines and he recommends making them shorter.
He is now talking about an inaccurate misdiagnosed case of of young women with LD.(So he says)
He is now talking about that he is qualified becasue he went to a clinic teaching him about how to identify ticks. (how many of us ever saw the tick????)
He claims he is very active in tick identification. (whoopty-doo)
-------------------- 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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He also said that there is no evidence to prove that children dying of SIDS is related to Bb.
Posts: 893 | From Florida | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
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posted
He says no evidence of fetal loss or maternal infection in infants. Get him out of there.
-------------------- 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
CANNOT BE RATIONAL AT MOMENT.
he wants to rob children of their lives.. can't bear it.
LIEGNER. thank god.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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TerryK
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posted
the pediatrician was thanked for his "Superior" presentation from panel member. AHHHHHHHH!!!!!
Posts: 6282 | From Oregon | Registered: Jan 2006
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5dana8
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posted
this guy is using one patient who is early in treatment ( 6 months) abx who is not showing improvment... not fair . would like to know how she's doing in like a year from now even 3... he diagosised her as "Anxiety disorder" Hope she goes back to her LLMD. so sad
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Tincup
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posted
Gotta love the fact Hot Pants called Shapiro- Gene....
And knew his personal schedule for returning home?
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Did Sood say that he AUTHORED A TEXTBOOK based on those guidelines?!!!!
All credibility RIGHT OUT THE WINDOW!
How could he not suck up?
-------------------- 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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posted
If I were casting a movie and needed someone to play satan, I would go with Dr. Sood. No doubt.
Posts: 843 | From Eastern USA | Registered: Jul 2006
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sometimesdilly
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posted
vermont- our doc is all yours. i need a break..
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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posted
Sunil was used as a plug to brown nose the panel. He spent most his time stroking the IDSA and even tried to say that most ring rashes are caused by misquito bites. (this guy is laughable)
-------------------- 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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5dana8
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posted
who is this guy now in stipped tie ?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Pinelady
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posted
This guy is GREAT.
-------------------- 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
I like this guy, not sure who he is, but he is passionate about lyme disease....so far so good.
Posts: 893 | From Florida | Registered: Dec 2008
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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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5dana8
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posted
wow wish i could follow this talk ...good to hear he is a great guy . shocked positive spinal tap. awesome good findings i think.
thanks pinelady
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Vermont_Lymie
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Member # 9780
posted
Dr. L, one of the best.
Yes, I hope the panel can try to walk in his shoes.
He starts by outlining his thorough education in medicine.
Posts: 2557 | From home | Registered: Aug 2006
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Pinelady
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posted
He is winning this for us.
-------------------- 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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Ocean
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Member # 3496
posted
Nomoremuscles,
"If I were casting a movie and needed someone to play satan, I would go with Dr. Sood. No doubt."
Hahaha!
Dr. L is DOING GREAT!
I love that he brought the report with him PROVING that the woman who didn't improve with even IV abx DID indeed have Lyme Disease based on culture growth from Spinal Fluid.
posted
His body language didn't show he was as confident as he would like you to think.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Pinelady
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posted
Bless him Lord.
-------------------- 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
Frequent Contributor (1K+ posts)
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posted
Imo, the gist of all this comes down to one question, and one question only.
Given that available studies are inclusive and that no one, including the shapiros of hte world can prove conclusively to everyone's satisfaction why patients still suffer after IDSA recommended tx,
can Lyme docs use their clinical judgement to provide the treatment they see is effective, or may they not?
and if not, based on WHAT logic may they not?
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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It is great to have him follow the last idiot!!
Posts: 893 | From Florida | Registered: Dec 2008
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sometimesdilly
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posted
hmm. liegner just said same- lyme docs need every tool available, period.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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gemofnj
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posted
wow!
this guy is incredible yay!
Posts: 1123 | From atlantic city, nj | Registered: May 2008
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Pinelady
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posted
He says he has used the antibiotics successfully when the IDSA says they are not.
-------------------- 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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he just said that intrav. ceftrx improved her condition. When the patient was taken off, she declined. As soon as patient was put back on she got better.
said you should read Pam's book
Talked about patients case and talked about how she did better on intravenous abx and how she got worse when taken off. Discussed patients death and how taking off abx allowed her to progressively deteriorate.
He is now showing cat-scan of patient that was very ill w/ Chronic Lyme and very severely affected from the disease. He ended up dying and they autopsied his brain and you can see the damage that Lyme had caused. Experts said they had never seen anything like this. They were able to show that his brain was infected with Bb.
Dr. Liegner is now talking about how this has affected kids too, not just adults.
WOW THIS GUY ROCKS
Now, discussing how Lyme patients is common to have multiple co-infections.
High percentage of patients having co-infections and very difficult for treating dr. They must have access to choose abx to treat the complex disease as it's difficult to treat multiple infections at the same time.
He said some ppl need hyperbaric txts and are allergic to some abx, so dr's need leeway to make their own choices for their patients.
He said LD patients need much higher doses of abx to treat the disease.
-------------------- 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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Tincup
Honored Contributor (10K+ posts)
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posted
Oh so heart breaking and hard to present these cases.
I can't imagine how this is possible, how he can control his anger and what I would have, rage, after dealing with this..
Except that I know above all else, he cares... and he WILL do it.
posted
His body language doesn't mean he is not confident, but that he is passionate and he knows that he is in the minority here.
Posts: 893 | From Florida | Registered: Dec 2008
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Pinelady
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posted
He says every thing that has to do with lyme disease needs reworked.
-------------------- 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
Frequent Contributor (1K+ posts)
Member # 9982
posted
dr liegner has been fighting for his Lyme patients and for the community for decades. I know from 1st hand experience that he is a world class doctor, and one who treats his patients with absolute respect and compassion.
He is one of our genuine heroes. THANK YOU,DR. Liegner!!
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
liegner told to wrap it up
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Pinelady
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posted
He says on numerous occasions spirochetes have been demonstrated on autopsy after even long term treatment
-------------------- 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
panel is banging on him, using extreme cases he presented as.. not very useful, esp as applies to revisiting guidelines.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Ok..
The toads are coming alive.
Dr. L presented the right stuff and now the Panel is showing their bias... trying to trip up Dr. L with questions.
Pinelady
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posted
stated it is very hard to culture in spinal fluid.
-------------------- 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
our family is so proud of you Dr. L........ GREAT JOB - WELL DONE!!!
-------------------- 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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AliG
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posted
Lantos - that was stupid.
How would you apply the catastrophic cases to guidelines?
Did he completely miss that he was showing irrefutably that tests stink & rule out by their recommendations is WRONG?!
-------------------- 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:Originally posted by Need Lots of Help: His body language doesn't mean he is not confident, but that he is passionate and he knows that he is in the minority here.
I wasn't talking about Dr. Liegner. I was talking about the previous speaker.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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He says you use all the tools you have available to you.
Dr. Leigner says that each doctor needs to use his/her clinical judgement when dealing with Lyme
He said there is always a risk of reinfection esp in endemic areas.
Dr. Leigner said they found spirochettes in her pericadium.
Said he is frustrated and can't fully understand why we can't use certain methods of treatment. Said we need direct antigen methods.
Being asked how many times he or anyone has tried to culture from the spinal fluid. He said it's very difficult. He said in Europe it has been done in many cases. He said we haven't done it here. He said it's a formidable pathogen.
Allen Steere up next
-------------------- 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
the panel is definitley trying to impeach Liegner's credibility.
STEERE next...
for the not fainted hearted, at least.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
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Vermont_Lymie
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posted
Liegner:
``Walk a mile in my shoes''
Describes experience, graduated 2nd in class from New York Medical School.
Had extensive post-graduate training, did autopsies; other training.
Trained in critical care medicine; taught him how to care for patients with serious multi-system injuries. He was taught never to give up.
Opened a practice in Armonk, NY
Started seeing patients with lyme disease; many of these patients would respond to antibiotics, but would relapse when abx were stopped.
Discussion of testing samples (urine, blood) -- missed some of this.
It is the anomalous case, that does not fit the standard model, that shows what we are missing and need to learn.
Discusses his published evidence of treatment resistant Bb infection, in several cases.
Discusses case of Vicky Logan; who unfortunately died from Bb. Brain tissue showed cerebral vasculitis with prominent plasma cells; you see this in syphilis and lyme.
This case is still under study, and not yet submitted for publication.
Discusses persistent cases.
Does this symptom only occur in adults? After a pediatrician refused a mothers plea to treat a fully engorged attached tick, a child died.
Clinicians treating patients with lyme are faced with extremely sick individuals.
Testing for co-infections as for lyme are not always reliable. Esp babesia and bartonella h.
Challenging and complex situation requiring maximum flexibility for treating physician; they must have their access to full armament of drugs
ISDA recommendations for amoxy are completely inadequate.
Illustrate the disasterous consequences of relying on antibody testing for lyme disease.
Lyme is a chronic persistent infection, general reassessment of everything assumed to be true to lyme.
Long-term abx is currently the best approach; we could have better treatment but
Dr. Sanders: question: go back to what has been discussed earlier today; given what you perceive as great limitations on our testing ability, how do you distinguish between lyme and lupus and chronic fatigue syndrome.
What clinical measures do you use?
Answer: I evaluate my patients very thoroughly; requires careful study of patient over time. It does boil down to clinical judgment.
Dr. Moro: you presented one case of a treatment failure; a nurse; did you consider re-infection?
Answer: at this time of life, she was confined to wheelchair with no pets; reinfection was unlikely in her case.
Question: How do we apply catastrophic cases to the more common presentations that we get? Answer: Like many illness, lyme is a spectrum. These extreme patients can provide insights into other ill patients.
Some of these methods of direct detection were developed many years ago; e.g. Rocky Mountain Lab; why are these methods not being used clinically, why are they not being made available and used for research?
Question: how many times have you tried to reproduce this and not found the organism? Answer: Bb is very hard to culture from spinal fluid. In Europe, there are many reports of positive Bb cultured AFTER treatment.
We all have to come to terms; this is a formidable pathogen, and there is a lot we do not understand about it. We have to be humble before this disease.
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Melanie Reber
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posted
Dr. Donta begins the afternoon session with 'guideline issues'. He speaks to the current guideline problems and what should be done with re: to 2 areas... post treatment and treatment specifics. Post treatment vs Chronic LD clinical observations need to be assessed. Late LD symptoms are defined and compared to Chronic LD symptoms, objective vs subjective... using CFS and Fibro as models to compare symptoms being defined... all three use the same subjective criteria. Lab criteria is touched on as excluding patients with CLD but not with the other models. Donta includes all WB bands with IgM and IgG for comparison to ELISA results... this relates to the narrow CDC definition which is a poor measure, and he restates a clinical diagnosis is needed. His lab results plus Imaging studies compare asymptomatic vs symptomatic and results were listed for 7 antibiotics tried. He concluded with the problems with assumptions and conclusions on Klempner/Steere past study... and showed some examples of his studies with antibiotic efficacy. He asks for revisions to guidelines and asks for further funding for studies.
Questions from the panel included: Where there control patients on the SPECT scan studies? Are you saying abnormalities in SPECTs are indicative of actual infection? Were patients tested for other immune issues?
Dr. Shapiro reviews his recommendations for the IDSA guidelines based on clinical trials. These include defining LD, efficacy of treatments suggested, and some problems he ran into... including adverse effects to meds, reinfection, EM, etc. He states that there is no new scientific information since guidelines were written that would suggest a change should be made. He assesses adverse long term treatment outcomes that may affect results and speaks to biases and multiple outcomes which effect study conclusions...like publicity. Shapiro states there is no credible evidence with CLD patients or any evidence of any other disease. They may have had it in the past, but if symptoms persists past 6 months it is something else. Doctors are part of the reason that patients are in fact suffering. He concludes that we need to explore articles on 'Medically Unexplained Symptoms'. (sorry, I had to stop here. you can guess the rest)
Questions from the panel included: Do you stand by the grading evidence used in guidelines? Do you think that the severity of symptoms listed do a disservice to Lyme patients? (HA!)
Dr Fallon addresses the question of repeat therapy and its usefulness. The subject of antibiotic effectiveness vs antibiotic risk is discussed... as well as Homogeneous vs Heterogeneous study samples which differ in results. Fallon goes on the explain the results of his study in cognition, pain, fatigue and adverse events. The conclusion compares symptoms as related to CHF, imaging results and risks. He then looks more closely at the Krupp study re: fatigue and several outcome measures, including unmasking... and does some revised statistical analysis of his own. Fallon concludes with suggestions in rewording guidelines to more accurately reflect findings.
Questions from the panel included: Re: Risk/ Benefit analysis, would you recommend treating? For how long and would you recommend repeat treatments? Did you run into problems with clinical trial patient selections? Are you aware of any studies using antibiotics for chronic fatigue or other conditions based on unknown etiologies? Would you go further by modifying your statement that their was indeed improvement with Ceftriaxone?
Dr. Sood, a pediatrician, became interested in LD primarily based on the number of calls asking for information. His role is as ID consultant to other peds and he speaks about the current guidelines based on their usefulness to his area of practice. He finds no scientific evidence that conflicts with the current guidelines based on his research for his book. He suggests minor changes re: EM description, prophylaxis, tick attachment duration, importance of papal edema (sp), co-infections and the need for the guidelines to be updated to be useful as easy reference. He closes with a patient case history of diagnosed Anxiety Disorder vs LD.
Questions from the panel included: Based on the film Under Our Skin, please address fetal loss and congenital LD? What is your prevention management strategy? And for children under the age of 8?
Dr Liegner began by presenting his medical and practical credentials and history including the statement 'Walk a mile in my shoes'. He went through several studies that he took part in with re: to the persistence and sometimes dire seriousness of Lyme disease. He shows direct evidence in CSF of live spirochetes, via CDC test results, after a 21 day treatment of patient with antibiotics. Liegner then goes on to relate patient history of continued diagnosis and treatments... involving multiple relapses when treatment was discontinued. The patient eventually died from TBD associated complications. A second patient case history was presented and this patient also died. Similar pediatric deaths were presented. A short video of Vicki Loagn was played... another heartbreaking fatality.
Questions from the panel included: Given the limitations, how do you distinguish cases of Lyme vs other chronic illnesses? Did you consider the possibility of reinfection in the patient case? How do we apply guidelines for catastrophic cases in a general guidelines? How many times have you tried to reproduce this positive finding and not found the organism?
***** sorry, I need a break here...
Posts: 7006 | From Colorado | Registered: Mar 2003
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AliG
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posted
Steere thinks documentable neurological Lyme is rare.
-------------------- 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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Pinelady
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posted
I do hope someone speaks up about the latest finding of the differences in the species specific genomes.
-------------------- 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
to the lady who told me about People of The Lie--are you here? and if so, hello, i am dilly, and am looking for the emperor's lost clothes right about now Posts: 2505 | From lost in the maze | Registered: Aug 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It just absolutely blows my mind over 5 HOURS have passed and we are still discussing studies of less than 150 people with this disease! MILLIONS may have it according to the CDC. How on earth can 140 or maybe 300 total people in 4 studies be evidence for the last 30+ years?
Just sad. Pathetic how little this disease is recognized/cared about. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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5dana8
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Member # 7935
posted
steere!....studies from 84-84 ? Always arthitus...& localized?
other symptoms ongoing rare...No way
cant believe my life is in the hands of these " ..." people
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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nenet
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Member # 13174
posted
Steere sees "few systemic symptoms" after arthritis
AliG
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Member # 9734
posted
quote:Originally posted by nenet: I think we've been staring at this picture of a grapefruit-sized knee for 3 minutes now.
Kind of sums up all of Steere's knowledge and perspective on this disease, somehow.
ROFLMAO -
I was thinking the EXACT SAME THING!!!!!!
-------------------- 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
& back to the knee AGAIN!
-------------------- 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
ok, i guess i'm the only one missing the bumsteer. my loss, i'm sure.
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What concerns me is I have heard little to no confirmation from either side Bb causes muscle spasticity, neuropathy, balance issues, ear pressure, head pressure, znxiety/depression and many other symptoms we all assume are Lyme here.
What about Dr. B's list of 55+ symptoms? The list of 300 diseases Bb mocks? The talk has centered around the extremes and not the typical patient on LN who doesn't feel well.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
How they decide the order of the speakers and who would have the ability to speak today?
Posts: 893 | From Florida | Registered: Dec 2008
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northstar
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Member # 7911
posted
Dr. L just made me cry... and then to listen to Steere's knees...I believe brain tissue is a somewhat different than a joint. His tone of voice is a major chalkboard fingernail agitation...patronizing sing song.
N.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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AliG
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posted
I wonder if he's still upset that they didn't call it B.Steerei
-------------------- 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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-------------------- 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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...good to hear he is a great guy . shocked positive spinal tap. awesome good findings i think. ![[kiss]](graemlins/kissing.gif)
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