AliG
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Member # 9734
posted
Back 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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, over 16,00 pages of documentation was presented by ILADS working group proving our point. It was submitted in April, before the deadline.
What you see here is only a tiny fraction of what has been presented.
The working groups was headed by Lorraine Johnson of CALDA.
I believe including her there were 11 people in that group.
Then people from all over the world sent in more evidence and written testimony.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
donta speaks.
1. mentions being on 1st panel, same question then as now, and what's not different is that the answers still aren't there
2. his focus is on 2 areas in guidelines
--post treatment
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Melanie & Dilly, you both ROCK!!!
Thanks for sharing your awesome, VERY HELPFUL notes!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
on post treatment-
how can docs differentiate active infection chronic, or "call it what you want", in patients without objective sypmtoms, from not that?
vs. something else?
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sometimesdilly
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posted
"nothing about post-tx that makes it after infection"
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sometimesdilly
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Member # 9982
posted
"labs USED to report all the bands. should still do so. "
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seekhelp
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Member # 15067
posted
Now this is what I'm looking to hear. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sometimesdilly
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posted
2 or more reactions, one or more specific to get igm positve
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sometimesdilly
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posted
(long ago) western blot became an adjunct to CLINICAL diagnosis, never meant to be definitive.
we do not use antibodies to track the course of an infection
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sometimesdilly
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Member # 9982
posted
brain SPECTs-- abnormalities found 75 percent of time, but in a sense, these pts are self selected.
BRAIN SPECTS ARE REVERSIBLE --somewhat objective evidence abx work.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dr. Donta actually did the first big published report on "chronic Lyme disease" proving people were still infected and responded to more treatment.
posted
75% defects in brain SPECT scans. Interesting, what could cause these deficiencies in water perfusion.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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sometimesdilly
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posted
questioning- how come ziths weren't effective in Klempner, and amox was?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"each antibiotic is NOT the same as the next antibiotic"...
sometimesdilly
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Member # 9982
posted
design- "mixed apples and oranges 1 month doxy and month ceft"
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sometimesdilly
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posted
abx different at molecular level, don't react in body in same way
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sometimesdilly
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posted
ceft questions...
ceft does not work at intracellular level
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
missing big scientific points here, hope someone else is on top of this
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sometimesdilly
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posted
macrolide abx do not work as well in acidic conditions (?)
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posted
We have precious few adjunctive laboratory studies to help us with these patients said Dr. Donta
-------------------- 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
Frequent Contributor (1K+ posts)
Member # 9982
posted
questions to dontay
on SPECT- are there controls in your study ? yes, in short- historical controls.
q- are you saying SPECT abnormailites are due to infection?
a- not directly.
followup- west nile studies say, no persistent infection, even with abnormal spects.
response- spect one path of study. not conclusive alone.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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Member # 9982
posted
SHAPIRO UP.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Talking about seronegative patients being immunodeficient? He said no evidence. He was was very good. Next.
-------------------- 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
He said there is no new scientific information since guidelines were written that would suggest that a change should be made.
-------------------- 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
Frequent Contributor (1K+ posts)
Member # 9982
posted
please, someone else summarize s's cr--p.
my 7 year old (born with Lyme, now well THANKS TO DR. JONES )has been by my side, patient since 8AM. and i'd rather hug him for awhile than listen to this.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Shapiro comes across so smart!! Screw the unethical part of the study. If he wants to bank MILLIONS of lives on his theory/research, LET HIM GET BIT W/O TREATMENT FOR A YEAR. Then use 14 days of Abx....simple study. Really.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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5dana8
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posted
how can ...piro get away with saying so much inaccurate stats & info?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Some Donta's notes, unedited, starting several minutes in his talk:
*In the beginning before the 2-tier system came about, laboratories would report all the band results. This should still occur.*
This is a more prolonged illness, this is from my tetracycline published paper, people who are symptomatic
Issues about abx treatment:
In vitro, Bb has sensitivity to a variety of abx. But it is not enough to be sensitive in vitro, it needs to get to where the infection is located.
Disparate results: how come azithromycin, as Dr. Luft addressed, and erythromycin are not as effective?
Before I get to that, I want to address whether there are statistical aberrations in the (IDSA) trials.
I will accept for the moment that there was not a problem and that these people did not respond; that the one month IV ceftriaxone followed by 2 months of oral abx (doxy) they received does not work.
However, we should note:
Each antibiotic is not the same as every other; we do not use the same abx for every illness.
We are mixing apples and oranges with doxy and ceftriaxone.
That does not mean that 3 months of ceftriaxone would not work!
Doxy has a high protein bound level, but if this is an intracellular organism, then tetracycline in a higher dose might work - and it does. That is the basis of my first publication.
Cefriaxone; is very active in vitro, does confer some benefit, though transient.
But after 12 weeks of Ceftriaxone, some patients slip - I think more than our tetracycline patients.
How do we analyze that and account for tetracycline benefits?
Tissue culture studies show that IV Ceftriaxone does not affect the intracellular bacteria, whereas tetracycline does.
We need a tissue culture model of Bb, does not exist
Ceftriaxone upregulates the glutamate receptor, which is upregulated in neurotoxicity. Then it is a motor disease, where lyme is a sensory disease.
Maybe there is an overaccumulation of the neurotransmitter - is Ceftriaxone working as an anti-neurotoxic agent?
Which is not to say that it is not acting on a persisting infection.
Clarithromycin; paper published by a doctor in Marseille; in this experiment he showed that lysosomal (?) agents did not affect viability of organism; they do not work in acidic environment. So we started doing experiments and observations.
Use a combination of hydroxychloroquine (plaquenil I think) with an antibiotic.
There should be grants to demonstrate treatment with these safe agents; clarithromycin plus other abx.
We need to revise the guidelines to allow for some question about what we do know and what we do not know.
Question: For your brain scans, are there controls? Answer: There are historical controls; I would not run a SPECT scan on patients without an illness
These are patients with chronic pain issues who fit his lyme profile.
Question: Are you saying that the abnormal scans are indicative of on-going infection? Answer: That is an important question; the spec scan abnormalities are due to some vasculitis condition.
Question: There are evidence from West Nile Virus that some WNV have similarities to patients with chronic lyme. But we do not have patients with chronic WNV.
Answer: But, we have people who reverse and get better with antibiotic treatment.
We have precious few lab or adjunctive studies to help us know what is happening with clinical patients.
Question: Are there antibody tests on patients with chronic lyme?
Posts: 2557 | From home | Registered: Aug 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
ok can watch now on windows media player.....thanks so much !
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Shapiro is one of the IDIOTS that testified against Dr. Jones and I watched as he sat there and lied.
Out and out lied.
He also "undiagnoses" patients by going through the health department reports and saying they didn't have Lyme because the patients didn't meet surveillance criteria.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Oh Gosh he is trying to say there is no proof if you just have symptoms
-------------------- 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
Frequent Contributor (1K+ posts)
Member # 3496
posted
once dx'd w' Lyme there is stress, publicity, medically other things happen, old age, is it accurate to say that other things are happening within someones body that's not Lyme?
-------------------- 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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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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sometimesdilly
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Member # 9982
posted
vermont's back!! YAY! now i go hug in peace..
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Oh my goodness..
Chronic Lyme Disease diagnosis is made because "the patient 'decides' that they have it"
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, I'm kidding, but not about the part of being involved in a study by a tick. If you truly believe your theory/research, it should be no issue.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Vermont_Lymie
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Member # 9780
posted
This guy is evil; he is trying to say that all chronic lyme patients are not credible.
Posts: 2557 | From home | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Of all the toads in the IDSA pond, he makes me the sickest.
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Why do we hear the same crap....how about PROOF it doesn't exist. Biopsies, tissue samples, blood, etc.? How can you repeat the same stuff in an investigative trisl?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
He is discussing literature on a Growing Number of "Medically Unexplained Symptoms" in patients and how that he wants to address the problem.
But, there is no evidence that the "Unexplained Symptoms" are due to lyme disease.........
Posts: 893 | From Florida | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dilly...
THANK YOU!!!
And later come back to us Barbara Lewis Harree Krishner Bowregard.
posted
Hey, I guess if "you can't dazzle them with brilliance, baffle them with BS"....
Posts: 249 | From Northern NJ | Registered: Jul 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes he says we are suffering, should we abandon scientific evidence that there is no evidence of chronic lyme disease. burden of proof that antibiotic work long term has no proof.
-------------------- 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
He just said there is no real definition of Chronic Lyme Disease.
He said a minority of patients with LD do have evidence of having had Lyme. He goes on to say they have no specific symptoms.
He said there are ppl suffering, but we should not abandon scientific evidence and he says there is no scientific evidence to suggest chronic Lyme.
he said there is no scientific evidence that active infections with LD is the cause of Chronic Lyme
-------------------- 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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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Hoosier, I sent pm...it may have been Luft or Volkman? Also, Dr. Donta mentioned the zith.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Vermont_Lymie
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Member # 9780
posted
Yes, I would be happy if he could experience some of my "medically unexplained symptoms."
"The burden falls on the person to prove that long-term antibiotics are effective, in a scientifically controlled study"
He just called all criticism of the IDSA's evidence base perhaps not true -- whose payroll is this guy on?
Posts: 2557 | From home | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I can't beieve ****piro's nerve.
-------------------- 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
Frequent Contributor (1K+ posts)
Member # 7935
posted
Tin ~ O ...piro he's so slippery ...makes me sick/ mad & my skin crawl. Yeck
where is he getting this bogus info?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Supposedly, even 40% of placebo patients even improved in their trials.
And, if a patient is receiving antibotics for lyme disease...then they are not getting the treatment for what they do have....with these Medically Unexplained Symptoms...
Posts: 893 | From Florida | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"You need a controlled study for scientific validity..."
That really means..
We want more grant money so we can sit on our humps and undiagnose as many as we can.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
He says we need to treat the real causes of our illness it is not lyme.
-------------------- 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
Dr Shapiro must have been teacher for the Inf. Disease Dr I went to... Full of hot air but no substance!! A pompous a$$... Totally discounted what I said! He is staying the VERY same junk that the doctor I went to said!
Posts: 75 | From Missouri | Registered: Apr 2009
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
so i'm a machocist.
he's going after fallon directly, and his recent study. distorting the whole way.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
reasonable people all agree that long term abx don't work.
we are so sorry patients are suffering, but abx don't work, but hey. lets do research to find out why patients without Lyme disease still suffer after we say they must be well.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
If you watch very closely,he has managed to "clone" a third arm out of his back, so he can congratulate himself.
Posts: 249 | From Northern NJ | Registered: Jul 2005
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