Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
I thought you said "daft". That is a better description. Anything with Auwearter, Klempner, and Halprin involved has to be daft.
I will plow through it and send you an e-mail, TC
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
We should all just bombard them with our comments. I am not sure whether they would be taken seriously, but it might do some good.
"The public comment period is open for 45 days, during which IDSA, AAN, and ACR are seeking input from the public, including professionals and patients.
Those wishing to provide feedback can view the draft guidelines and submit their comments on the IDSA website: idsa.org . The deadline to submit comments is Aug. 10, 2019."
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Thanks, TC and Ann-OH, for alerting us to this important matter.
I suspect that the IDSA is in a big hurry now to update their guidelines for the treatment of Lyme disease in light of the on-going RICO (racketeering) lawsuit against the IDSA, which is due to start in Feb., 2020: http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/38228?
The IDSA was ruled in violation of Anti-Trust Laws which is why they were supposed to revise them way back in 2006, as part of an agreement settlement with the court. However, I suspect that they are counting on the fact that that part of it will have been forgotten by now and that they won't change anything substantially. I don't trust their intentions.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
PS to TC & Ann-OH, Methinks we need to make sure that the plaintiffs' attorneys know what the IDSA is up to with regards to updating their clinical practice guidelines because I don't trust their intentions and I suspect that it relates somehow to the RICO lawsuit.
Has either of you seen anything in the IDSA draft so far which especially concerns you with regard to how it might affect the RICO lawsuit? (I'm asking because I haven't had any spare time yet to start reading through it myself.)
BonnieBT, feel free to chime in too, please, because your legal intuitions (and connections) are awesome.
Posts: 4563 | From TX | Registered: Sep 2002
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thanks TX Lyme Mom
I'm reading through it too. Apparently, we can read it and comment on it but we cannot post any wording of it.
"The guidelines are the copyrighted property of the IDSA, ANN, and ACR. No part of these guidelines may be reproduced without written consent."
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I had to stop reading after I got about 1/2 way through.
Sooooo boring and I had other things to do.
I'll have to take time to punish myself later by reading it, IF the bird doesn't grab it first for the bottom of his cage!
Or the puppy doesn't want to use it for potty training practice!
Or the neighbor doesn't grab it for starting his wood stove!
To quickly answer questions... the attorneys are informed, but thanks for bringing that up!!
I haven't seen anything in it so far that would affect the lawsuit, but I also have a feeling we should be posting a big banner about the guidelines that say...
BRING ON THOSE GUIDELINES- LET THE LAWSUITS BEGIN!
Really! You can only cry stupid for so long.
I think these guidelines will bring them another step closer to sinking their ship entirely and costing them a pretty penny in the process.
As you may know Auwaerter at Hopkins- a big target- thinks he got away with something on this first lawsuit.
WRONG!!
Anyhow, so sorry I am not here as much as I need to be, and not as much as I want to be!!!
My time is being spent with Lyme related projects though.
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by Tincup: To quickly answer questions... the attorneys are informed, but thanks for bringing that up!! I haven't seen anything in it so far that would affect the lawsuit,
Anyhow, so sorry I am not here as much as I need to be, and not as much as I want to be!!! My time is being spent with Lyme related projects though.
Thanks, TC. That's very reassuring to know that the attorneys are already informed. It's good to know that many folks are on their toes because this RICO lawsuit is a really big deal.
TC, you always go way above and beyond, so never ever put yourself down. You are an inspiration to all of us.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Beware of any recommendations that persistent symptoms be referred to as Medically Unexplained Symptoms or MUS.
MUS has already pretty much been co-opted by the pyschs in Europe.
This might be interpreted as an end-around to have persistent Lyme sequela be perceived as rooted psychological problems.
Posts: 228 | From Unitied States | Registered: Jul 2015
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
OK, I found an easy way to "cheat" in reading through this long and boring document. First, click on any of the hyperlinks of your choice which are found near the beginning.
I chose the link entitled "Prolonged Symptoms following Treatment of Lyme Disease" and click on it, which will take you directly to line 1409 which is about half-way down in the document.
What I would really be most interested in though doesn't exist in this document and that would be "late-stage Lyme" because so many patients don't suspect Lyme disease until many years after their tick bite. Such was the case in our family because Lyme disease was unheard of in our part of the country until ca 1987 when an article appeared in "Family Circle" (or maybe it was "Woman's Day") which were popular newsstand magazines of that era.
I had saved that old article for over a decade or longer because that was the same year that my husband had a tick bite with rash and fever, so he was lucky that he was able to get prompt and aggressive treatment from our family doctor and made a full and complete recovery without sequelae.
Our daughter wasn't so lucky though because Lyme disease was unheard of in 1973 when she had her tick bite in third grade which started her chronic health problems. We recall it clearly as if it were yesterday because the school nurse was the one who picked the tick out of her scalp where it was hidden, and that little spot remained sore and itchy for many weeks afterwards.
That was the same year that her bad headaches began which caused her to miss a lot of school during her elementary years. By high school, she had to be put on the homebound program because home schooling was not a legal option back then.
She wasn't diagnosed until 25 years later, in 1998, when the late Dr. Lida Mattman developed the first lab culture for Bb which is a very slow-growing organism and which took a couple of months to grow. I still have a copy of the photo that she sent to us. We weren't aware of any other kind of indirect lab test, such as the Western Blot, for Lyme disease back then because nobody in this part of the country had ever heard very much about Lyme disease at that time.
The fact that she was finally able to make a full and complete recovery from late-stage, chronic Lyme (plus co-infections of Babesia and Bartonella) seems like a minor miracle now, in retrospect. And that's why I'm very interested in the fact that I don't see anything at all mentioned about late-stage Lyme disease, which is inexcusable, IMO.
So there! I guess that I'll need to figure out how to contribute a comment about "late-stage, chronic Lyme" during the open period for public comments because I see this oversight as a major flaw in this document.
PS -- Another quick and easy way to "cheat" while reading through this lengthy document is to perform an electronic word search for key terminology as a way of searching for important concepts to see if there are any other major omissions which need to be highlighted.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Everybody should read those draft guidelines.
Because whether they know it or not, potentially tens of thousands of Lyme patients just got thrown under a bus.
Posts: 228 | From Unitied States | Registered: Jul 2015
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Tincup, please check your e-mail. I sent you a PM via EM a couple of days ago, but I don't think you've seen it yet. I'm very curious about something, but I didn't want to post my question publicly. TIA.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
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Member # 3162
TOUCHED BY LYME: IDSA’s insincere request for guidelines feedback lymedisease.org/idsa-insincere-request/ Dorothy Kupcha Leland 19 JUL 2019
Last month, the IDSA released a long-awaited draft of its latest Lyme treatment guidelines. The accompanying announcement stated: “We are looking for feedback from not only physicians and healthcare professionals, but also individuals affected by Lyme disease, such as patients, care givers, patient organization members, advocates, and researchers.”
Maybe you thought you’d print off the 100- page report and curl up on the couch to read it? Ain’t gonna happen.
July 19, 2019 How about downloading a PDF and reading it on your Kindle? Heck no.
Why not, you ask? Because the IDSA has purposely made it impossible for anybody to make a copy of either the guidelines or the 200-page list of accompanying resources.
The only way to read any of it is to go to the IDSA website and view it in real time on your screen.
Makes you wonder how serious that request for public feedback actually is, doesn’t it? This cumbersome process makes it difficult for anybody to read such long documents—whether you are a patient, a busy doctor, or a journalist interested in the story.
Wait. We’re not done yet. After you’ve slogged through all that just to read the darn thing, there’s another burdensome procedure for making comments.
Here’s how the IDSA website explains it: In this form, you are given 20 opportunities to enter your comments on the guideline. Please note that you will need to complete your review in one sitting as your work in progress cannot be saved. Once you hit the “Save and Next” button at the end, your responses will be recorded and saved. If at the end you have additional comments, please click “Enter Additional Comments” and complete the survey again.
For each comment, you must select which section of the guideline your comment relates to: · General comments on entire draft · Introduction & methods · Tick bites prevention and prophylaxis of Lyme disease · Early localized Lyme disease (erythema migrans) · Neurologic Lyme disease · Lyme carditis · Lyme arthritis · Prolonged symptoms following treatment of Lyme disease · Cutaneous manifestations of Eurasian Lyme disease · Lyme disease coinfections · Supplement Materials
For each comment, you must be specific (section, page number, line and/or table number, comment). Any questions marked with an asterisk (*) require an answer in order to progress through the comment form. You must click “Save and Next” at the bottom of each page or your responses will not be saved.
Complicated enough for you? LymeDisease.org is currently going over the draft guidelines with a fine-tooth comb and will have comments ready soon. Stay tuned.
Aside from the content of the document itself—which, spoiler alert! is plenty disturbing—the process by which the IDSA arrived at this draft is highly problematic.
Why the guidelines matter
For those who may be new to this party, some background: The 2006 IDSA Lyme guidelines have long been a point of contention. They rigidly define what is “allowed” to be diagnosed as Lyme disease and limit permissible treatment to a short course of antibiotics. Thus, they deny treatment to the unlucky many who don’t fall within those narrow parameters.
Furthermore, insurance companies often use the guidelines to deny payment for Lyme treatment, and medical boards use them to revoke licenses of physicians who don’t follow them. Currently, the guidelines are also the centerpiece of a federal lawsuit. It charges that the document’s authors and eight insurance companies conspired to deny medical care to Lyme disease patients.
In 2016, the IDSA announced that it would re-evaluate and update the Lyme guidelines. At the time, the group also announced with much fanfare that they had named a “patient representative” on the guidelines panel. When our organization spoke to her, the woman in question admitted that she had no experience with Lyme disease whatsoever!
After the Lyme community protested loudly, the IDSA changed her designation from “patient representative” to “consumer representative.” They also said they would add three “patients” to the panel as well. But “to protect their privacy,” the IDSA refused to name the people who were supposedly there to “represent” us.
So basically, three people we’ve never heard of—and never will hear of—supposedly spoke on behalf of the Lyme community throughout the guidelines process. Are you feeling “represented” yet?
Click here for the draft guidelines.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Here's what I'm thinking about doing, as a way of confronting the IDSA, but without complying with their stupid non-sense for submitting comments, is to write a letter to my US Congressman and also to my two US senators ... and then adding a CC to the IDSA !!
That oughta' grab the IDSA's attention, I hope.
I need to think this idea through more carefully first, but I've already got some really good ideas about what to put into my letter which should grab everyone's attention -- namely, a brief summary about the BW aspects of Lyme disease, plus a copy of Kris Newby's book "Bitten", plus a couple of other similar books about BW which are available on Amazon.
Frankly, I don't care if I miss the IDSA's deadline and if I don't comply with their stupid requirements because my project will take a lot of time in order to do it effectively.
My goal is to do it on my terms, not theirs, because their terms are too ridiculous to bother with. If my letter is strong enough, I don't think that it will be ignored.
I've already ordered copies of several books on the subject of BW warfare, and I need to get busy reviewing them before I get started with this project. (I'll list the books later, in a separate message, because I'm being interrupted now and don't have time to hunt for those links at Amazon.)
These are just vague ideas which are still in the earliest stage of planning. But I wanted to share these ideas now in order to stimulate others to think "outside the box" when it comes to finding effective ways to confront the IDSA -- while "killing two birds with stone", so to speak.
PS -- I'm editing to add that when I mail my letter to the IDSA, I plan to send them by Certified US mail with return receipts required. If the IDSA refuses to accept my letter, then I'll have evidence of it.
I might even go to the trouble and expense of sending copies to several members of their guidelines committee individually, assuming that I can find their addresses -- which will be a major expense and effort on my part, of course.
That's why I've gotta' think all of this through very carefully first. And I'll probably need to revise my plan considerably before executing it. I'm still in the preliminary stages of planning it -- brainstorming about it, actually.
I'm open to suggestions and comments 'cause I need all the help I can get. (I probably wont' have time to respond to PMs, but I'll watch this topic to see if anyone posts any suggestions for me here under this topic.)
Posts: 4563 | From TX | Registered: Sep 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good info and good job TX, as always! Thanks so much for sharing.
I do have a suggestion to help save you time and money and energy, for what it is worth...
There is a brand new website set up to keep submissions made by members of the Lyme community concerning the IDSA guidelines draft.
In other word, your responses.
We are collecting them so there will be full transparency and we will have a record of what was submitted for everyone's use down the road.
Rather than mailing or making copies for others, you can simply send them a link to your page or the entire site.
So, if you send something in response to the IDSA guidelines draft you can also send it here.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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