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» LymeNet Flash » Questions and Discussion » General Support » Topics To Comment On- IDSA Guideline Draft

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Author Topic: Topics To Comment On- IDSA Guideline Draft
Tincup
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If you haven't chosen a topic from the IDSA draft guidelines to comment on...

Here are some of the things wrong with them that need to be addressed.

Feel free to help yourself to any of these topics. The more the merrier!

(I am working on a Bartonella response, one on Lyme ACA and skin manifestations, and one overall as to why they suck.)

https://sites.google.com/view/lyme-monsters/idsa-guidelines/2019-guideline-notes-draft-review

A link to the draft guidelines is on this page above and there is a deadline for submissions.

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

Posts: 20216 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
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I really hope everyone who has been affected by Lyme is writing a comment to the IDSA.

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

Posts: 20216 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Dr J. M. set up a website so everyone can go to one place to read comments that are submitted.

Send comments to IDSA guidelines then copy and E-mail to links provided.

https://www.lymedisease.org/aug10-deadline-idsa/

Thank you Dr J. M.

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TX Lyme Mom
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In light of the fact that the IDSA has agreed to extend their deadline for comments until Sept., 9, I immediately renewed my effort to participate, and that's how I found a couple of very helpful items on the special website which Bonnie alerted us to (above).

https://www.lymediseaseguidelines.org/guidelines-vs-standards-of-care/

START of QUOTED MATERIAL

"Guidelines vs Standards of Care

"It is imperative that a distinction remain clear between “guidelines” and “standards of care”. The latter are often the basis of malpractice suits and Medical Board actions against physicians.

"A standard of care is a community-developed construct of what is acceptable in the community in which a patient lives and the doctor practices. It considers individual variation in patient needs, desires, and community resources.

"It never stipulates that all patients be treated in an exactly specific way. But it establishes a minimum of good care.

"Guidelines, on the other hand, exist to advise doctors of what is currently known as best scientific practice. They do not consider patient differences and are not designed to be used in actions against doctors.

"Their level of scientific accuracy is variable, and the lowest standard is those which rely upon “expert opinion” rather than scientific study. Conflicts of interest with the authors of the guidelines might exist.

"CDC guidelines are designed for public health purposes, and not for use by individual doctors with individual patients.

"We are concerned that there is a movement to make guidelines into standards of care and remove doctor and patient choice from the mix."

END of QUOTE

Posts: 4528 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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Here's another link to a comment composed by a medical professional which can be found on the special website which Bonnie alerted us to. I liked it because it inspires my own thought processes. Here's the link in case anyone else wants to glance at it for inspiration too.

https://www.lymediseaseguidelines.org/pdffiles/rosalie-greenbergs-letter/

PS -- Remember that it's much easier now to comment because the IDSA has graciously decided to allow us to print out copies of their proposed guidelines for our convenience in reading them off-line.

That had been a huge stumbling block for me, and obviously for many others too. Now, I feel that this urgent task is actually do-able -- and now I have no excuse not to make another effort.

Posts: 4528 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Global Lyme Alliance responds to IDSA draft guidelines.

https://globallymealliance.org/gla-response-to-proposed-idsa-aan-acr-2019-draft-lyme-disease-guidelines/

Posts: 1769 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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Bonnie,
You are really on your toes- -- and obviously very well connected -- to find this extremely well-sourced document by the GLA, which was just published on-line only two days ago!

Thanks ever so much for alerting us to it!

This document is so well referenced that it took me a couple of hours just to print it out, together with its embedded hyperlinks to all of its accompanying scholarly references.

This document is the equivalent of a review article in a major medical journal, IMO.

The first thing I intend to do is to make a small monetary donation to the GLA in appreciation of all of the research which they have funded over the years which has contributed to this summary document.

And then I intend to begin studying their document in hopes that I can do a halfway decent job of composing my own far less erudite comments. Their list of references is awesome and will serve to inspire my own meager efforts in order to make my job a wee bit easier.

Posts: 4528 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
Tincup
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Woah!!! May I add something that may be worth something?

First, you can certainly donate any dollars you want to whomever you want, BUT, please check to see what (specifically WHO) the money they get goes to fund. (Example- I've seen Wormser funded more than once, Auwaerter, etc.)

Here is one for example...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3557545/

If you decide that may not be the place you want your money to go, please remember, I really like ice cream.

[Big Grin]

2nd, you'll notice (and I only skimmed through very quickly) GLA mentioned PTLDS several times in their response.

Aside from that being a hated bunch of words by most patients, perhaps they didn't notice that NO WHERE in the 100 page draft were those words or terms used.

Strange, but true. So why would anyone want to reinforce it?

3rd... The last section... there is an official definition for chronic Lyme disease that GLA failed to mention, which was published a couple of years ago. It is located here...

https://sites.google.com/view/marylandlyme/chronic-lyme/chronic-lyme-definition

True, it isn't widely accepted amongst the idiots, but then neither are we. ~ smile ~

And if we don't start sharing OUR work and using it, we are the ones who will continue to suffer.

Just my opinions, for what it's Fort Worth.

See that play on words TX? HA!

[Big Grin]

I MUST SAY very sincerely... thank you very much for making a comment.

I don't believe anything we say will change anything, but we must stand up for ourselves.

In other words, don't burn out your brain trying to impress them or force the science down their throats. They really don't care.

Just something simple would be delightful.

:grouphugs:

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

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Tincup
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TX,

Please see my new post before commenting. It will/should make it a bit easier for you.

BB,

Always a wonderful source of information you are! Thanks!!!

[Big Grin]

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

Posts: 20216 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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quote:
Originally posted by Tincup:

3rd... The last section... there is an official definition for chronic Lyme disease that GLA failed to mention, which was published a couple of years ago. It is located here...

https://sites.google.com/view/marylandlyme/chronic-lyme/chronic-lyme-definition

True, it isn't widely accepted amongst the idiots, but then neither are we. ~ smile ~

My dearest TC,
(No, I'm not being facetious, I really do mean it!)

The reference you cited by Stricker and Fessler was withdrawn -- not sure why or what their academic and/or political pressures were, but that reference has been deleted from PubMed. (The only place to find a copy of it now is on your website.)

Here's a link to all 81 of Stricker's current publications about Lyme (or Borrelia) on PubMed, as of this date:

https://www.ncbi.nlm.nih.gov/pubmed -- Aw Shucks!

The full link won't come through anymore. (PubMed has obviously changed their software. Drats!)

But there's another way around this problem. Just go to the PubMed link (above) and then copy and paste the following into the query box, exactly this way, with all punctuation and capitals, etc. exactly like this:
stricker rb [au] AND (Lyme OR borrelia)

Click on it, and Voila! Now you'll find all of Stricker's current publications related to Lyme or Borrelia.

See, the reference you cited is still not on the list! But so what.... because now at least you know how to find whatever you want, whenever you like, on PubMed.

PS -- As for the GLA, I'm not in the loop as much as you are, so maybe I don't know any of their faults, but I do remember meeting a really nice gal from the GLA at an LDF conference way back ca 2002 or so. She had helped to raise mega-$$ for their research as a volunteer who had spent many long hours putting on fancy galas every other year in the financial district of NYC. We were duly impressed with her sincerity.

And the list of Lyme research publications which the GLA has contributed to is impressive, also, but I must confess that I haven't studied all of them, so perhaps not all of them draw conclusions which are favorable to us. I would imagine that you are much better informed about this than I am. I've been remiss, lazy actually, about doing my Lyme homework in recent months/years. (I depend on smart folks like you, TC, and others here at Lymenet to help me sort it all out.)

Posts: 4528 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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quote:
Originally posted by Tincup:
Woah!!! May I add something that may be worth something?

First, you can certainly donate any dollars you want to whomever you want, BUT, please check to see what (specifically WHO) the money they get goes to fund. (Example- I've seen Wormser funded more than once, Auwaerter, etc.)

Here is one for example...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3557545/


TC, look more closely at that PubMed article. Click on it. Brian Fallon is one of the co-authors. He's on our side, so hopefully, there will be something positive for our side to be found in that article -- which I haven't read, BTW, just to keep things honest here.
Posts: 4528 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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quote:
Originally posted by Tincup:

2nd, you'll notice (and I only skimmed through very quickly) GLA mentioned PTLDS several times in their response.

Aside from that being a hated bunch of words by most patients, perhaps they didn't notice that NO WHERE in the 100 page draft were those words or terms used.

Strange, but true. So why would anyone want to reinforce it?

Frankly, I don't find PTLDS to be such an offensive term. It simply means that the initial treatment was inadequate and failed. And that the patient deserves to be retreated until symptoms are resolved totally and completely, without relapse. Period.

We might prefer other terms, but we need to be able to speak using the language that is commonly accepted, even by the opposition -- especially by the opposition, since they are the ones whom we hope to defeat .... someday, in the not-too-distant future, hopefully.

Posts: 4528 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
   

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