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» LymeNet Flash » Questions and Discussion » Activism » IT'S ON!!! IDSA is broadcasting (Page 11)

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Author Topic: IT'S ON!!! IDSA is broadcasting
5dana8
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i have been feeling so sad since seeing the hearing, listening to all the lies.

But today when i saw this link http://tiny.cc/mIH2Y

it was like a warm blanket to my soul and a reminder that there is still hope as long as people care and are willing to be avocates & speak out.

They can not bury the truth forever.

Thanks Tincup , there are just no words to say how grateful i am to see this today. Thank God for all of you...

And thanks from the bottom of my heart to all my lyme friends & advocates

Blessings & healing hugs


[group hug]

[ 08-01-2009, 06:37 PM: Message edited by: 5dana8 ]

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

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5dana8
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Clashing views at the IDSA hearing
http://tiny.cc/Wjknq

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

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bettyg
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thx dana for link; good comments & 3 feedback ones as well [Smile]
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3lymiesintexas
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I was on an airplane traveling to see our LLMD's when this was broadcast.

Yesterday I went to the IDSA website first to see if I could playback the entire webcast.

Clicked on Dr Sood's presentation and began to read....Then clicked on Shapiro's, then Weinstein's.

I thought the world was coming to an end !

Came here next, read all 11 pages, and felt MUCH better !! Thank you, Thank you, Thank you!

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AliG
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from The You-niversity IDSA Guideline Review Archive


Breaking up info for those with Neurological Lyme to read & putting some space between the presentation links [Smile] ....


In viewing, you agree to IDSA terms of use:


Terms of Use

Thank you for your interest in the webcast or video of the IDSA Lyme Disease Review Panel Hearing (this ``Video'').

This Video contains proprietary and important information. Please read these Terms of Use (these ``Terms'') carefully before viewing the Video. These Terms govern your viewing of the Video.



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******The IDSA Guideline Review Archive******

Introduction

Tina Garcia,
Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ

Lorraine Johnson, JD, MBA,
California Lyme Disease Association (CALDA), Ukiah, CA

Daniel Cameron, MD,
International Lyme and Associated Diseases Society (ILADS), California

Phillip Baker, PhD,
American Lyme Disease Foundation (ALDF), Bethesda, MD

Ben Luft, MD,
The State University of New York, Stony Brook, NY

Allison Delong, MS,
ILADS & The Center for Statistical Sciences, Brown University, Providence, RI

Barbara Johnson, PhD,
Centers for Disease Control and Prevention, Fort Collins, CO

David Volkman, MD,
Nissequogue, NY

Sam Donta, MD,
Falmouth, MA

Eugene Shapiro, MD,
IDSA & Yale University School of Medicine, New Haven, CT

Brian Fallon, MD,
Columbia University Medical Center, New York, NY

Sunil Sood, MD,
Schneider Children's Hospital at North Shore, Manhasset, NY

Ken Liegner, MD,
ILADS, Armonk, NY

Allen Steere, MD,
Massachusetts General Hospital & Harvard Medical School, Boston, MA

Steven Phillips, MD,
ILADS, Wilton, CT

Arthur Weinstein, MD,
Washington Hospital Center, Washington, DC

Raphael Stricker, MD,
ILADS, San Francisco, CA

Gary Wormser, MD,
IDSA & New York Medical College, Valhalla, NY

Conclusion

--------------------
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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Robin123
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Finally had a chance to read through this thread - hysterical at times -

nice to be able to watch the proceedings while awake this time - last Thursday, I was taking it all in on two hours of sleep prior.

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AliG
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I find the timing of this letter to The Day, submitted by Ann Gershon, to be quite disturbing:

http://tinyurl.com/lpkle8

It's criticizing AG Blumenthal on 8/3, just days after the review.

[ 08-05-2009, 11:25 AM: Message edited by: AliG ]

--------------------
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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Tincup
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To answer questions about the slide show...

http://www.youtube.com/watch?v=xFWTMgcBYSo


The song is by the late Dan Seals, a wonderful musician who was very sick and undergoing treatment when I contacted him late last year. We lost him, unfortunately, earlier this year.

http://en.wikipedia.org/wiki/Dan_Seals

The photos are ones I took at different rallies and protests (one was donated, the little girl with the sign).

We were at events in NY, NJ, NC, and CT... and one photo was from the Lyme Net Buffalo River Canoe trip that Maddog got us all together for.

Patients came to the events from all over the country. It was magical each and every time.

I'd never put anything together like that before, had no clue how to do it... and it took months playing with it to get it right.

I was so overwhelmed with the memories, the struggles we've been through and the friends we've made that I cried every time I would work on it.

Our patients, the kids, the doctors... they are all my heros.

God bless them all.

And I am pleased to know you enjoyed it. When I am feeling beaten down I play it and remember it isn't just me against the world now ... there are so many good people who have joined together to make a difference.

And we won't go away!

[Big Grin]

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

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northstar
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Questions about their warnings:

They say video or content cannot be reproduced or used without IDSA permission.
Does that mean that one cannot transcribe what was
said?
I dont understand why they have "exclusive rights".
The Att. Gen. office should have full access and
rights also, and the right to disseminate as they
see fit. (opinion).
My concern is that in 6 months, it goes off the record of history, and IDSA will not be accountable. ( and should it disappear earlier, they are not liable....)

As an aside: I had to laugh at their FULL CAPS WARNING of disturbing info and watch at your own risk.

Northstar

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AliG
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I believe that IDSA is only required to make it accessible for a year or something like that.

I don't know how long You-niversity would maintain it in THEIR archives. Perhaps it will be possible to still utilize the links above AFTER IDSA has removed them from their site. I guess only time will tell.

I can't imagine that you couldn't transcribe what was said, but WHO KNOWS how a lawyer might try to twist that statement. That might be a good question to ask the AG.

I have a feeling that their main concern is that snippets or segments that make them look bad won't be used to make another film like Under Our Skin. Those clips in there did NOT make them look very good.

--------------------
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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nenet
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Oh, I'm so happy to find that this thread didn't disappear. I freaked out when I couldn't find it again, thought it got deleted or something.

I am also concerned about the restrictions on use and copying - whoever said it before is right - once this archive is no longer required ot be hosted, it will disappear from the public view and be like it never existed.

I wonder if anyone is up to contacting the AG and asking about this? I am in the middle of a move and about at my wits end, so I can't do this right now.

Anyone else up to the challenge? We really need to be able to have access to these files and public viewing rights - myaybe it could be hosted by a public body/the AG's office, etc? Not sure, but just brainstorming.

--------------------
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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nenet
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Also, Tincup, that slideshow is wonderful. Thank you so much for creating it, and for all of your efforts in this struggle.

Thank you to everyone again for all of their contributions here, and elsewhere. The efforts of of you and people like you are what keeps us moving forward and pushing down the wall that was created by ignorance and greed. We will prevail!!


For anyone that may not have seen it yet, Tincup put together a GREAT summary of the IDSA Review Hearing in Medical:


"Evidence is In: Chronic Lyme Does Exist"

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/84267

--------------------
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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bettyg
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tc,

dan seals is such a wonderful singer; so glad we had him as long as we did.

thanks for saying WHO was singing; it was so touching to me EACH time i hear it and see the slide show.

i didn't know YOU had done the slide show; well done tc! [Smile] hugs/kisses

very powerful!

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3lymiesintexas
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I don't like this letter written by the President of the IDSA very much either.

http://www.theday.com/re.aspx?re=05e8c026-d09d-4061-bc47-bd33c45f0130

It makes them look innocent and harrased by a small number of whackos... kinda upsetting

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northstar
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Two more items about the hearings:
==================================

CALDA, Lorraine Johnson blog, has a great summary of her observations and impressions.

http://www.lymedisease.org/news/lymepolicywonk/177.html


I really agreed with this observation:

quote:
What was striking was the amount of science presented on the side of the patients and their treating physicians (mainly from ILADS) and the paucity of science presented by those representing the IDSA guideline panel.

ILADS had previously submitted a binder containing 280 pages of analysis contesting the guidelines together with 1300 pages of peer reviewed scientific literature that the IDSA has failed to consider.

IDSA presenters relied heavily on opinion and reputation to support the guidelines, advancing an unsubstantiated somatic disorder hypothesis to explain away treatment failures under the IDSA Lyme treatment guidelines.

==============================
My opinions:

"somatic disorder hypothesis"=21st century "vapours". Many general md's and those who strictly adhere to IDSA guidelines probably will not be able to
handle the nuances of this idea, and just as they assign lyme and tbd's as depression/neuroses and what all, they will conveniently assign the "21st century vapours" as a convenient diagnosis code/syndrome without any real understanding.

It will shut the door to real and significant research. Dangerous to those with tbd's.

Hi Ali,
Snippets? I would think their entire testimony, context included, would be a problem down the road!

The increasing prevalence of IDSA secrecy, destruction of hearings, closed doors, and legal caveats is rather glaring, including their "closed door" sessions at conventions (no recording, no writing about it outside the convention, etc), and resembles the modus operandi of M15/M16 proportions.

============================================


On the LDA website
http://www.lymediseaseassociation.org/

quote:

LDA Presents: One Presentation You Missed

The settlement between the Attorney General of Connecticut and the IDSA over the 2006 IDSA Lyme disease guidelines was historic yet much of the agreed upon process was left under IDSA control.

Not only did IDSA get to choose the panel members, thereby restricting the range of opinions represented, it also set the hearing length, location and date.

Most importantly, IDSA retained the power to select the speakers, including those challenging the guidelines.

Among those not chosen is Dr. Betty Maloney. This is disappointing because Dr. Maloney wrote 6 evidence-based challenges to the recommendations on prophylaxis, early Lyme disease, late neurologic Lyme disease, post-treatment Lyme disease, the list of not recommended therapies and the use of clinical judgment in Lyme disease.

Some of her points were taken up by other ILADS presenters but the strength of her material is best understood when seen as a whole.

There are links to the powerpoint, and
(pdf format) written notes by the dr. who
was not allowed to present. The url listed above has the direct links.
Northstar

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northstar
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quote:
It makes them look innocent and harrased by a small number of whackos... kinda upsetting
Yes, that is part of their mis-information dissemination
strategy. (raise the spector of "fringe" radicals, minority whackos, avoiding acknowledgement of the real lack of science, etc).

The misuse and manipulation of the media by certain groups is a fact of life.

Notice how IDSA now is starting to use the media more (op ed pieces, plans to distribute brochures, new websites and familar initials resembling patient/ilads groups) with their point of view. They are trying to counteract the support group efforts. Where were they ten years ago...certainly not warning the public. Where were they 10 years ago when ILADS were already treating babesia. How long will it take them to incorporate bartonellosis as a legitimate and dangerous tbd, if untreated, like borreliosis? Or will they just shuffle that off to the "vapours"?

Northstar

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AliG
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Nice to see you Northstar, you haven't been around all that much lately. I hope it's because you're doing well & have just been too busy. [group hug]

They probably deliberately restricted the number of presenters allowed in order to make it appear to those watching, who didn't know better, that there was only a "small group" who were in disagreement.

If memory serves me correctly though, I do believe that one of the early presenters made certain that info was included in their presentation. I hope I'm remembering that correctly.

Could you imagine if little segments could be pulled out for news reporting? They wouldn't air the entire thing in a news story but the IDSA restrictions would prevent the press from actually showing any of the words coming out of the villains' mouths.

If they allowed THAT, all of those segments would likely be accessible into infinity and they wouldn't be able to bury this in a year's time.

That was what I was trying say.

The entire day ABSOLUTELY makes THEM look like they've got serious problems but anyone not actually infected or treating patients wouldn't likely dedicate the time to viewing the entire thing, IMO. [Frown]

--------------------
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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northstar
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Hi Ali,
I agree with all you have said! My intent was just
to take it one step further! Doing much much better, but not there yet! You sound great!

I am now reading Dr. M's notes...very powerful.
While the statistician devastated the Klempner study, this dr. takes out the surrounding idsa evidence. kaboom.

I never knew just how scientifically"right" was the direction of ilads, and how absolutely unstable, weak, and even invalid was idsa evidence. I knew (bits and pieces), but to see it all presented in this session was magnificent. All those who worked on this, in front of and behind the scenes, are magnificent.


Lots to digest.

Northstar

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lou
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Someone needs to be getting permission from IDSA to copy this whole thing. Or several somebodies. At the very least ILADS and the AG should be getting a copy. I can think of no reason IDSA could give that would be acceptable for not allowing a copy to be made.

This has got to be done. If IDSA refuses, then we go back to the AG. This is something he could intervene in, and should.

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AliG
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The only person I could see them granting permission to would be the AG.

I can't imagine that they'd allow anyone that they might feel opposes their viewpoint to have a copy if they haven't been made to provide permission, if asked.

Does anyone know if the AG's agreement made a stipulation with regard to allowing/providing any copies to anyone?

--------------------
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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Tincup
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AG said.. "Does anyone know if the AG's agreement made a stipulation with regard to allowing/providing any copies to anyone?"

This was considered and has been in the works for a good while, even prior to the hearing.

We are still working on it... at all the top levels.

If I hear something .. when it is decided, will share that info.

[Big Grin]

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

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Tincup
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nenet.. thanks!!! You're so sweet!

[Big Grin]

3lymies... That's just old Hot Pants letting of some steam. No one believes her anymore than they do the IDSA.

[Big Grin]

North..

Nice to see you!

[Big Grin]

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

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sometimesdilly
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Lou- here, hear...

and ali, long lost--- [group hug] [group hug] [group hug]

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Tincup
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Grandma...

Check the IDSA website. Copies are not allowed without specific permission.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
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Posts: 20325 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
AliG
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Thanks TC [Smile]

Dilly- [group hug]

I'm just having a thought:

Why did they get to waste time with presenters who presented info from the same studies they already reviewed?

I thought the purpose was for the information that was NOT taken into consideration to be aired.

That allowed them to limit the presenters they accepted with new information due to having limited time.

[confused]

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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  |  IP: Logged | Report this post to a Moderator
TerryK
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AliG - thanks for posting the terms of use. I guess anyone who wants to remember exactly what was said will have to do their own transcripts since it sounds like not even the transcripts can be made public.

Once the video is off-line - all evidence will be gone. Personally, I expect the video to come down on the day that it is allowed to be taken down.

The letter you found is not a good sign. It is clear that she will do everything possible to keep the guidelines from being changed. Sounds like she has every confidence that they won't be changed. In other words, I'm sure she has no intention of eating her words.

I find it interesting that she is an infectious disease pediatrician as is the chair of the committee. I imagine that is a very small "good old boys" or "girls" club.

I felt optimistic because of the excellent presentations at the hearing. I thought it would be particularly difficult for them to discount DeLong's presentation but it sounds like any scientific information that opposes the IDSA view rolls off them like water off a duck.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
AliG
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Terry said:
quote:

rolls off them like water off a duck

[lol] [lol] [lol]

I like your analogy! [Big Grin]

The wait to find out what they actually do decide to do is going to be EXTREMELY frustrating!

They're probably counting on stretching it out as long as they can to keep us quiet.

They probably hope that our energy/strength will dissipate and we'll be less hostile when they actually decide to say they still think they were right at the time, however since NEW information has become available SINCE that revision they're due to revisit them ANYWAY.

That way they can get off without admitting any culpability and avoid class-action lawsuits.

I thought the ID Ped thing wasn't a good sign either. The Peds (IMO) can be even MORE pig-headed, or duck-headed if you will.

She's both an IDSA ID AND a PED?!!!!
no sir, I don't like it [shake]

Only time will tell, but my optimism is very guarded.

I think it's positively awful how distrustful I've become of the medical profession in general. There are a handful of physicians in the entire world that I would trust and they seriously had to earn my trust.

I'm SURE I can't be alone in feeling that way.

I'm sure there are probably some decent, honest, good-hearted physicians out there, encountering more & more patients who challenge their every word & decision and except NOTHING on faith from them, scratching their heads wondering why it's so hard to gain patient trust.

They can thank IDSA for that. [Roll Eyes]

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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  |  IP: Logged | Report this post to a Moderator
TerryK
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AliG -
I have a family member who is an M.D.. He's been in the field for decades and in all that time he's found only a handful of collegues that he respects. That is very scary to me.

I do not feel that they get a broad view of the world in their education. They are over-worked while in school and not allowed to develop normal social behavior due to the gruelling work schedule they must keep. To top it off, society as a whole puts them on a pedestal and has unrealistic expectations of them. I think the system that trains and mentors physicians is not healthy.

It's not just IDSA that fosters distrust. Look into cancer and you will see the falsehoods there in the treatment of patients who in my view are often robbed of their last few years on earth thanks to the allopathic cancer care they are convinced is effective.

My distrust of doctors literally saved my father's life once. I pity the people who suddenly get sick with a life threatening illness and put all of their trust in the medical community to save them. I've seen so many die this way.

Maybe we are jaded but I'll take that anyday over putting blind faith in a system that does not deserve it.

Edited to add:
I'm always struck by the difference between N.D.'s and M.D.'s attitudes toward their patients. In my State, N.D. have very similar training to M.D.'s. They are even allowed to dispense prescriptions.

Every single time that I've been to see an N.D., I've been treated with respect. Far from what I usually get from most M.D.'s.

My point is, their training could be changed so that they have a different attitude toward their patients - more a partnership. Much more conducive to healing in my opinion.
Terry

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AliG
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It IS truly sad. [Frown]

There's probably, in many cases, a different mentality going in to the ND profession as opposed to conventional MD.

I would think an ND would likely be trained to take the entire patient, including psyche, into consideration in treatment.

I think it's wonderful that they can Rx in your state!

It would be great if, with all this healthcare reform hooha, they could make a few things standardized across all of the states that actually benefit patients like

NDs having the authority to Rx,
all physicians being able to treat their patients without persecution and
insurance companies having to pay for medically necessary treatment without fighting about it's necessity.

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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  |  IP: Logged | Report this post to a Moderator
AliG
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AGGGGGGggggggggggghhhhhhhhhh!!!!

See slide #4 in this Medscape Update I just received:

Ticks and Tick-Borne Diseases: Slideshow


[Eek!]


[shake]

adding: #7 [toilet]

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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  |  IP: Logged | Report this post to a Moderator
TerryK
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Yes, agree with your post AliG. At the least, MD's should be allowed to treat patients without persecution.

As far as the slide, this is the Psychiatry and Mental Health section? So are they saying if you still have symptoms after the IDSA "adequate" treatment theory that you should be evaluated for a psychiatric condition? I think this is exactly what the ill informed Weinstein said at the hearing.

I ran across this today - a quote from Wormser from 1995 in an editorial he wrote:

http://www.annals.org/cgi/content/full/123/8/627#FN
"Considering the well-recognized feature of latency in human B. burgdorferi infections, surprisingly little attention has been paid to the ability of these experimental vaccines to prevent asymptomatic infection (recognized by the development of antibodies to borrelial antigens other than OspA)"

Now, for some reason the well-recognized feature of latency is ignored and chronic lyme disease doesn't exist. snort

Terry

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AliG
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"Latency" must be how he explains a WB that turns positive, without possibility of another tick-bite, after many months or years (likely regardless of patients complaints of those symptoms he dismisses because he can't actually SEE them [Roll Eyes] ).

It was either "latent" if OBJECTIVE symptoms show up or "false-positive" if only SUBJECTIVE symptoms are claimed by the patient. [shake]

Excuse me please, I have to go vomit now. [toilet]
The mere mention of the name "Wormser" makes me sick to my stomach. [Frown]

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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  |  IP: Logged | Report this post to a Moderator
TerryK
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AliG wrote:
It was either "latent" if OBJECTIVE symptoms show up or "false-positive" if only SUBJECTIVE symptoms are claimed by the patient.

Yes, it was very clear in the hearing that those who were pro current IDSA Lyme guidelines were married to the idea that only objective symptoms were valid. Totally insane given the inaccuracy of borrelia testing but also seems to encourage practicing medicine in a vacuum. In addition, this stance further discounts the validity of the patient experience and input.

This all seems to be a product of poorly practiced "Evidence Based" medicine. I DO NOT want to see U.S. healthcare move even further towards "Evidence Based" medicine.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
TerryK
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Interesting Grandmother. I didn't know they were never validated for lyme. This small group of "scientists" seem to get away with sloppy science and yet retain a good reputation. Amazing!

This explains Weinstein a bit better. I don't know when this was published.
http://www.lymecryme.com/Trio.pdf

He's been around for a long time and was involved in the Dearborn criteria. Apparently gets very upset when people say the testing is unreliable or inaccurate.

I don't know when he got this grant money of half a million bucks for Chronic Lyme - something he doesn't even believe in - but it's upsetting that what little money is available goes to someone like him.

WHY would the NIH give what little money is available for chronic lyme to a person who doesn't even believe the disease exists???

IF chronic lyme disease research gets more funding from the governement, I'm very worried that bogus research will prevail.

Terry

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Tincup
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"WHY would the NIH give what little money is available for chronic lyme to a person who doesn't even believe the disease exists???"

Dirty waters run deep.

[Big Grin]

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