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» LymeNet Flash » Questions and Discussion » Medical Questions » Does anyone know what happened to ILADS case definition? Link broken

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Author Topic: Does anyone know what happened to ILADS case definition? Link broken
BobG
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http://www.prweb.com/releases/2017/05/prweb14305710.htm
Posts: 360 | From Massachusetts | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Keebler
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Best to go straight to the source at ILADS.

I never quite trust those outside links like "PR Web" and the like. Sometimes their information is spot on but other times it can be skewed.


You may have to look around a bit through their TAB drop down menus - or give them a call.


www.ilads.org

ILADS
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Keebler
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http://www.ilads.org/lyme/about-lyme.php

Basic Information about Lyme Disease

By The International Lyme and Associated Diseases Society

Some (not all) excerpts relating to chronic lyme:

11
A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.

12
There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease.

However there is a plethora of documentation in the us and european medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.

13
Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief.

The return of symptoms and evidence of the continued presence of Borrelia Burgdorferi indicates the need for further treatment.

The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.

14
Many patients with chronic Lyme disease require prolonged treatment until the patient is symptom-free. Relapses occur and retreatment may be required.

There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured. . . .
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BobG
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Yes, went to ILADS and to the original journal in the link and look at all articles the journal has published. The ILADS web site makes no reference to this article which is a major mystery. It appears to me the article has been rescinded for reasons I would like to know.
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Keebler
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Call Dr. S's office. He's one of the co-authors. To the right of PR article (about the missing article), contact detail:

http://www.prweb.com/releases/2017/05/prweb14305710.htm
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[ 03-06-2018, 07:05 PM: Message edited by: Keebler ]

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Keebler
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You asked about ILADS website.


Still, this detail about some scrubbing action at the CDC website might offer some kinds of explanation / connection:

https://www.lymedisease.org/cdc-deletes-idsa-more/

Lyme Disease.org - 07 December 2017

Touched By Lyme: More about CDC website’s deleted references to IDSA

Excerpts:

In a recent blog, I reported on how the CDC Lyme pages have recently scrubbed away any references to the IDSA Lyme guidelines.

They didn’t seem to change any of their actual advice, though. And they link to NIH pages that diss the concept of “chronic Lyme” and give a big thumbs-down to long-term antibiotics for Lyme. Leading me to the conclusion that the changes were mainly cosmetic. (“Lipstick on a pig?”)

This morning, on Twitter, independent journalist Mary Beth Pfeiffer posted a response from the CDC about why they had deleted the references to IDSA: . . . .


https://www.lymedisease.org/touchedbylyme-cdc-lipstick-on-pig/

CDC website removes link to IDSA guidelines.

Just lipstick on a pig?

LymeDisease.org - 02 December 2017
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BobG
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Yes, lipstick but the pig looks a little better. Don't see the potential connection with CDC website. Troubling that a case definition very supportive of ILADS has been taken down.
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BobG
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Tincup, any insight into this?
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Tincup
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Yes. One minute. See if I can get it from my site. Not on my computer.

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

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Tincup
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That was easy enough! I surprise myself somtimes! Ha!

The pdf is on this page. Original link as you noted doesn't work.

https://sites.google.com/site/marylandlyme/chronic-lyme-disease/definition-of-chronic-lyme-disease

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

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Tincup
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And yes, it is excellent!!!! Please share far and wide!

Chronic Lyme exists and is now official!

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

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BobG
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Thanks. I had it too. I think I got it from your site. My question is why did the original journal remove it from their site?
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Tincup
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Can't say Bob. But, hopefully it will be back soon!

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

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TX Lyme Mom
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It's been deleted from PubMed, too! I searched for it just now, and it's definitely NOT listed on Stricker's publications list at PubMed.

If I am free to attend the upcoming Morgellon's disease conference in Austin next month, i'll try to remember to ask Marianne Middelveen about it. She's NOT one of the co-authors of this particular paper, but she has co-authored numerous articles on Morgellon's disease together with Dr. Stricker, so maybe she might know.

She's also a good friend of M.C. Fesler, the other co-author of this mysteriously missing article, so it should be easy enough for her to find out from either one of them.

I'm printing out a copy of it from TC's website right now so that I can take it along with me. Thanks, TC, for preserving such a fantastic archive of valuable Lyme documents.

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BobG
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I sent a letter to the publisher. No response.
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Tincup
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Well, as I said above, I >> can't << say.

And I do know that asking will produce no answers right now. Its a legal thing...

But, it should be resolved soon! Let's hope so!

And please keep sharing it! Use it all you can. Got to get the word out there.

[Big Grin]

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

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