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» LymeNet Flash » Questions and Discussion » Activism » IT'S ON!!! IDSA is broadcasting (Page 5)

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Author Topic: IT'S ON!!! IDSA is broadcasting
lilacs48
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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!
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liesandmorelies
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Talking about Dr. Fallons Study.

Now, he goes onto to conclude there is no scientific evidence to show chronic Lyme.

No scientific info to suggest changing IDSA, but we should put money into study's to help those with vague symptoms.

Says there is NO live infection and the risk far outweigh the benefit of long term abx use.

Saying there was no statistically difference btwn. placebo and long term abx in patients.

--------------------
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"

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sometimesdilly
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questions begin..

studies we disagree with are all flawed.

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pab
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He does feel sorry for us!

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

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Tincup
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jk..

Thanks for breaking up the madness from the madman with some humor.

MUCH appreciated.

[lol]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Ocean
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TC...LOL!!! Can I order one of those bumper stickers from you please???

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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5dana8
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wow ...piro never really answers the questions. ?

what ? so only 2 panel members where able to ask rebutle questions?

--------------------
5dana8

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sometimesdilly
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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.

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gemofnj
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i think the panel is onto his lies and crap!
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Tincup
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OGGGGG..

She is thanking Sap head for feeling sorry for patients!

Ahhhhhhhhhh!!!!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sometimesdilly
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fallon- I AM NEUTRAL. don't go there.

long term abx do work, that is my focus today.

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sometimesdilly
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correct- control studies say LT abx aren't recommended

incorrect- that LT abx should not be prescribed

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Tincup
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Fallon MUST stay neutral to remain credible... a fine line our researchers must walk.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sometimesdilly
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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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refutes shapiro's slap at number of particpants, etc. defending study, based on facts
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Tincup
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Can you call the Panel and ask them to tell Dr. Fallon to stop for a minute while I run to the ladies room?

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sometimesdilly
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TC-absolutely. but panel needed that reminder
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sometimesdilly
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statistical anaylsis,anyone? vermont?
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AliG
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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.

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sometimesdilly
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fallon is addressing risks of IV's straight on.
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liesandmorelies
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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"

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sometimesdilly
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his concern is consistnet- i heard same presentation by him in person, befire study was published.
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mtree
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[lol]
I love the bumper sticker idea Tincup!!!

--------------------
worrying about tomorrow takes its strength away from today

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Tincup
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How many of you are still in your pj's?

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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5dana8
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wish i didn't have such neuro problems to be able to follow....how is Dr. F doing?

is it stronge finding? Clear ?

lol Tin. Still in pj's & not even brushed my teeth...... [Smile]

--------------------
5dana8

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Ocean
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I'm confused...

When he mentioned fatigue and Osp A (Band 31), does he mean if you test + for Osp A then you are more likely to have fatigue???

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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sometimesdilly
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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.

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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.

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5dana8
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thanks Dilly [kiss]

--------------------
5dana8

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sometimesdilly
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heads up- losing audio. last time the whole system crashed shortly afterwards.
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sometimesdilly
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dana- [hi] [group hug]
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liesandmorelies
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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"

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Pinelady
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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

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sometimesdilly
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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.))

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sometimesdilly
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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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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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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

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sometimesdilly
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fallon- only ceft and doxy have been studied in the few controlled studies.

we can't generalize about other abx from only that

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liesandmorelies
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Fallon is being asked questions now by panel.

He says if you relapse after treatment, he would recommend retreating.

q? being asked about number in his study. he said it was very difficult finding patients because criteria was so stringent.

difficulty reflected the nature of a clinical trial. He said pain and fatigue were the worst symptoms, greater than cognitive symptoms in his study.

he says it would be a mistake about broad generalizations about abx's as the study's have only studied ceft. and doxy.???

he said you can't make broad generalizations of all abx and how they would work.

--------------------
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"

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Tincup
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Good thing they are asking Dr. Fallon questions.

He is kicking butt.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sometimesdilly
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who??
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Vermont_Lymie
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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.''

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sometimesdilly
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idsa guidelines made it easier to diagnose children..
(i bet it did.)

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Ocean
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Dr. Fallon was amazing!

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Tincup
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Quack, quack, quack... Sunil Sood.

He has reviewed the literature in the text books (written by IDSA authors) and find they agree with the IDSA Guidelines.

Wow!

Who'd a thought that?

DUH...

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Hoosiers51
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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.

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sometimesdilly
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now THIS is a mindless toad.
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nenet
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re: EM rashes ("red rings")

"most of these are probably mosquito bites, not tick bites"

- no idea who this is

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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Need Lots of Help
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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.......
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5dana8
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who is this guy now dilly in beige suit?

--------------------
5dana8

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Hoosiers51
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i don't know if i'm watching the right thing....I"m seeing a woman psychologist right now
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sometimesdilly
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unbeleivable. he would give acknowledge FEWER cases of acute Lyme, even.

god save our children.

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gemofnj
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UGH gag me! was paid to be on here???
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Vermont_Lymie
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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 [Smile]

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sometimesdilly
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coinfections-- " an emerging area of confusion among patients"
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gemofnj
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hoos,

this link
http://cdnsessions.you-niversity.com/player.html

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5dana8
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hoosier51 - a man is speaking now , he's wearing a beigge suit. sorry i can't figure out what hes saying & not sure who he is

--------------------
5dana8

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Need Lots of Help
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Many pediatricians are not aware of the ISDA guidelines and they are too voluminous to read...who is this guy????
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sizzled
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"Grow your own dope. Plant a Shapiro."
[Big Grin] [Big Grin] [Big Grin] [Big Grin] [Big Grin]

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sutherngrl
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More widespread usage of the IDSA quidelines!!!! Shut up!
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sutherngrl
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More widespread usage of the IDSA quidelines!!!! Shut up!
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Pinelady
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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

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sometimesdilly
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this "pediatrician" is allowed to breath the same AIR as Dr. Jones???????????
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Vermont_Lymie
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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?
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dmc
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The poor children on Long Island.
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Need Lots of Help
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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.

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fatigued15
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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.
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northstar
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oh see dr.zut (sp?) totally ignore bartonella in
both IDSA guidelines and his "case study".

N.

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sometimesdilly
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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

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nenet
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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.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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gemofnj
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this guy is an @$$!

holy crap! i cant believe this idiot treats children!

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Vermont_Lymie
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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.

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sutherngrl
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This is just pitiful! Poor babies!
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Tincup
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He is part of the Pediatric Lyme Vaccine Study Group.

He has published with some of the other IDiots.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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1Bitten2XShy
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This guy is horrid!
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