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» LymeNet Flash » Questions and Discussion » Activism » IT'S ON!!! IDSA is broadcasting (Page 9)

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Author Topic: IT'S ON!!! IDSA is broadcasting
seekhelp
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Wormser is saying it's good science now.
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Tincup
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I am suddenly feeling old.

Everyone of these ducks I remember from way back when.

They've all gotten older of course and look so much older now.

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

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Tincup
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The Worm mentioned DATTWYLER.

UGGGGGG!!!!

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

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Gert
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YAWN - LOLOL
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njlymemom
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is anyone reperesenting the AG office at the hearing? do they have a representative there attending?

--------------------
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

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pab
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Who is in the audience?

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

~ ~ Hope is a powerful medicine. ~ ~

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northstar
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the map comment: that was sooo petty. I could not believe that was the best she could come up with.
Besides, I believe it was suggested in an earlier
presentation that more tick surveys were necessary.
So here is a projection of increase in tick populations, and now they want disease info. Shoot,
she could look it up on the cdc website. Apparently the implication of the map was not apparent to her.

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sometimesdilly
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1. many new members on 2006 guidelines (inference- are new, highly regarded, so must be right)

2. abx chosen- standard, are favored, evidence the same as any other idsa guidelines required

3. the dosages and length of time of abx all peachy, too few cases of anything we don't say exists to even study,including late stage neuro Lyme

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liesandmorelies
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Shoosty,

The squeaky wheel gets the oil. I totally agree with Tincup on this one.

Sorry you don't see it that way. Please don't fret. It will be okay.

--------------------
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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nomoremuscles
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quote:
Originally posted by Tincup:
Hey Shosty...

You said..

"Once again, I am disappointed in the tone of posts here on Lymenet. These responses to the hearing hurt our credibility,and are symptomatic of a dogmatic orthodoxy that is just as harmful as the one criticized"... blah blah blah.

With all due respect, when you walk into a dog fight, you MIGHT have to hear some barking. If you object.. there are other places to be.

CALDA has a twitter and chitter if you prefer...

Or you can sit their on your high horse and whine... but I still think these idiots are toads and I'm gonna keep saying it over and over.

Why?

Because for 15 years we were all nice and polite and it got us NO WHERE!

Less than no where.

Not till we became a "small but vocal group" (IDSA's own words for us)... did we start getting listened to.

Do you really think if we weren't out there kicking down doors like we are.. in the tone that we use.. things would be moving forward?

History says no.

Do you think the quiet voice in the corner will be the one that is heard and makes changes?

It never worked before.

Do I like doing this?

ABSOLUTELY NOT!

But until we raised a vocal ruckus.. NO ONE LISTENED!!!

Today I am proud to say...

They are listening.

[Big Grin]

DITTO!!!
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Pinelady
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I believe it is all Eastern.

IDSA guidelines state on bite.

Doxy 200 single dose. Em 1-14 days treatment. level 1 nerve palsy. no evidence. carditis no evidence. arthritis not common, late neuro ext. rare. post lyme level 1. Grab my seat.

--------------------
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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we SAID these guidelines are voluntary..
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seekhelp
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HOW MANY OF THESE people can't work with these symptoms? Go to the ER? Geez.
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Shosty
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Ocean, I posted before Dr. W. and would have included him with Dr. Snood in those whose testimony I did not respect, because of his attitudes about "somatic complaints."

Nevertheless, let's express ourselves the way rational, stable, mature people do rather than act in ways that support these awful prejudices.

Editing to add that I also reject Wormser's reference to "pre-infection emotional state. I do believe that when mysteries persist in medicine, certain elements of the establishment then point to emotional/psych. causes, esp. for women patients.

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sometimesdilly
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please. let us not waste a minute doing anything but savoring every minute of this day, even when the presenters nauseate.

the whole world is watching them. the whole world is watching, and worms do NOT like light.

keep your light beams focused where it matters

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Geneal
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Wow. You guys totally rock!

Been working all day.

Read all 8+ pages. Felt like I was here with you watching.

Thank you for posting this and letting me participate on a less grand scale. [Smile]

Does anyone know if there will be a transcript of this hearing?

Hugs,

Geneal

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5dana8
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so does the worm get the last word? [Frown]

it slays me has saiys " voluntary.. "

and not disabling ?....gerrr

tx ~ no benifits? ...he shpould call me.

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

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nenet
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SLIDE:

"Post Lyme Disease Syndrome"

subjective symptoms, circular reasoning (not sure where, missed it)

-Klempner et al NEJM 2001;345:85-92 referenced again

--------------------
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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sometimesdilly
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calling fallon a liar
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seekhelp
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It's hard to argue with Wormser on this slide showing no positive tests.
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Tincup
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pab said.. "Who is in the audience?"

It is only by invitation. Mostly IDSA because they did the inviting.

Some of the IDSA's media contacts, because they did the inviting. None of our media contacts were allowed to be there.

A few from our side are there... very few though.

I know Pat Smith is there by invitation.

GOOD GOSH the Worm is making me sick!

But then... HA!.. did I expect different.

Worm just admitted they aren't suppose to rebut other speakers but admitted 2 seconds later he would rebut Fallon.

Almost a kind of.. "Let me take you out back and show you whose who."

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

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Pinelady
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He is NUTS. Reguarding krupps klempner?

He said in no case was there a positive test or culture.

--------------------
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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Gert
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Why is the Worm allowed to quote past presenters? I thought that was a rule to not do that?
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AliG
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They think "fatigue" doesn't matter?
HE should experience the "fatigue" this disease causes.

jerk

--------------------
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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seal of approval for klempner, fallon lied, so post lyme lyme symdrome- who knows?

the sickest patients are most likely to pretend to stay sick, and hey, isn't it interesting that they were also nuts before diagnosed??

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northstar
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Guidelines are voluntary....be sure to put that in the info idsa publishes. And send it to the med boards and insurance companies.

Also, this thing about rating headaches and pain. These are yes no type questions. However, a headache to a normal person is not the headache
of a lyme patient. They need better rating scales.
Normal people dont know what a real headache is....
they cannot know a migraine unless they have had one. Useless statistics. The same goes for "every
day pain". I was normal for decades. I had a few aches and pains,and they are nothing compared to the
pain I have had with this stuff. It is out of the ballpark, not a yes/no category.

As far as bart/babs testing? worse than lyme, so of course they could not find it.

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5dana8
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the worm~ such a lair & twisting the facts. cant believe this guy has my life in his hansd. its disgusting:toilet:

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

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Pinelady
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No evidence for coinfections present. Animal studies have no relevance. Mice have shown no inflammation and have no evidence of lyme disease.

--------------------
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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springshowers
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Here is the Ongoing blog and Comments on the CALDA Site.

IDSA BLOG

For anyone who might be interested

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Tincup
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Hey G and all new comers.

Glad you could make it.

We are almost like what they are trying to prove.. NUTS.. after being at this all day long.

Worm just said... None of the mice had evidence of infection...

GIVE me a break!

Oh here comes the NEJM idiot article... old news.

Come on Worm.. don't you have more for us?

[Razz]


UGGGGGGGGGG

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

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sometimesdilly
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you know what? i would rather be the kind of nut worms accuses us of being than the devious lying life-ruining kind of SICK that he is..
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northstar
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I cant believe he offhandledly dismissed his own
past research because of treatment and testing
improvements.

What will he say in another ten years?
How many lives will be seriously compromised
because of current faulty theories, speculations,
and denial of current science.

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Pinelady
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PCR and assays can be false positive. Trying to dissuade the panel.

--------------------
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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truly loathsome. knives with smiles.
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Tincup
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Now ALL tests, even culture and PCR can be false positive.

AH!

They are setting themselves up to protect themselves for the law suits to follow... and to dismiss those well documented cases that are proving our point.

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

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seekhelp
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He carea about Babesia!!
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dmc
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He talks alot but his slides don't show the studies. He's stating. He talks about the important studies but does show the references.
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Pinelady
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He says it needs updated only on Babesiosis

--------------------
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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here we go..is asking- how do we say nice things about patients and screw them at the same time?
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Ocean
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False Positive Culture???

Growing Spirochetes from thin air??

Wow...somebody is a magician!

I figured that their statements at LEAST had to have scientific possibility.

Geesh...I guess I shouldn't have figured anything positive would come from this.

--------------------
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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Nicole_Denise
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quote:
Originally posted by Shosty:
Nevertheless, let's express ourselves the way rational, stable, mature people do rather than act in ways that support these awful prejudices.


Shosty, while I respect that you would respond differently to the hearing than others, I would ask that you perhaps think about your wording.

I believe everyone here is rational, stable and mature. They just have different opinions.

I can't help but feel you just impled that most of us were acting immature, or unstable. That is uncalled for.

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seekhelp
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he just looks so arrogant.
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sometimesdilly
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referring to lantos above.


baker suggests how IDSA can improve the language while stating how to screw patients

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Tincup
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Babesia section needs to be update he admitted.

But then Dumler from HO HO HOpkins might need to be pulled back into the dump for the next set of guidelines to help out since he is the babesia man.

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

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5dana8
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one question to the worm? whats going on?

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

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sutherngrl
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He must have a patent coming up on a Babesia test.
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Ocean
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Sutherngrl....very true!

--------------------
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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nicole- just minutes left to be 100 percent here
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sometimesdilly
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nicole- just minutes left to be 100 percent here
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seekhelp
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If the world can't see through these IDSA responses and pure avoidance of facts, I'll be amazed. I had to see it to believe it. I do more now.
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Pinelady
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I liked the part where he said since 1997 he believes the only thing that needs changed is babs guidelines. I call that covering your own butt.

--------------------
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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question for lorraine

--state of CT, revision of guidelines.. idsa SAID it was voluntary. let's discount conflicts of interest- i don't believe they exist


WHAT?? THAT ISN'T BIAS??????????????????

who was that???

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northstar
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Carol missed the point again: legislationdoes not tell how to diagnose and treat. It allows the dr.
to practice freedom.

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Tincup
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Way to go Lorraine- good answer.

[Big Grin]

My goodness... is Carol Baker showing her bias now or what?

HOLY COW!

[Big Grin]

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www.TreatTheBite.com
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www.MarylandLyme.org
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sometimesdilly
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to repeat- he doens';t believe blumenthal's findings?? what the hECK is he doing on this panel??
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Tincup
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Exactly Northstar...

Good point!

[Big Grin]

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nenet
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Ironically, 12 months ago (before I began antibiotic treatment), I would never have been able to watch, much less understand, any of this testimony.

By the way, I have taken a lot of screen caps of some of the slides. After I find out if there are any copyright restrictions, I will put them online for anyone interested, until we can get access to archived video.

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Lymenet Success Stories

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Pinelady
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Yes dr j just said testing sometimes does require challenge. although not in those words. says there are things in the works but not yet approved by fda.
asked about urine antigen test. samples range not clinically useful.

--------------------
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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Tincup
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They just sent me an email saying they are having one more speaker representing the IDSA... so hold on!

His name is Fred Flintstone.

He is from Bedrock.... and he is a little known part of the IDSA Guidelines Panel doing mostly editing for the Worm and Saperio.

[lol]

They couldn't get Barney Rubble... but Fred is expected to arrive soon on the back of a purple flying dinosaur.

[Big Grin]

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

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sometimesdilly
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the voice of CDC-- science should dictate whether guidelines should be changed,and there is no new science at the moment, some in pipeline.

enjoy this while we can...

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pab
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My husband is listening at work. He sent me an email asking me if I think the coughing person has an infectious disease. [Smile]

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

~ ~ Hope is a powerful medicine. ~ ~

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northstar
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so Carol does not understand what legal conflict of interest is, as defined by a legal attorney general. Another point she missed.

Phew!

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sometimesdilly
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thanks, nenet.

idsa had a agreement before you signed on that you agreed to by being there. that should say.. i think i saw copyright stuff htere...

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Nicole_Denise
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This is awesome...I don't have to watch the video! There's a new comment every time a press "refresh"
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Tincup
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NO NO Navy guy!!!

I thought you'd be ok? GEEZE!

Ask Barbara Johnson about IGeneX when they KNOW if you read the guidelines that they aren't thought highly, according to IDSA..

Because they PROVE IDSA wrong...

GEEZE.

Can you spell B-I-A-S-E-D?

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

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sometimesdilly
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pab-heh!
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sutherngrl
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Northstar, I have been wondering the same thing. Obviously he doesn't know how to treat his cough.
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Ocean
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Tincup,

Why didn't they ask you to speak?

The panelists would have NO idea how to refute your speech!

--------------------
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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Pinelady
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Testing that was approved in the late 80 to 90 mostly no longer in use.

--------------------
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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the navy guy went down, tin? i missed that. he looked ok a lifetime ago. too bad, since he was one of the 2 that did.
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Tincup
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Get the CDC toad off the screen before I chew off my leg.

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

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sometimesdilly
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so close to the end..

baker calls stricker-- suggest ilads can't get their stories straight.

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nenet
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I think whoever it is that has the cough has an allergy to ILADS-leaning science.

He was really losing it during Dr. Leigner, Dr. Volkmann? (forget spelling), and Dr. Phillips.

Or perhaps it is somatoform?

--------------------
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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Tincup
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Here she goes again (Baker) ... going after Stricker.

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

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northstar
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carol says "im just picking on you as a random choice".

yeah, that's believable...not.

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