LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter

The Lyme Disease Network receives a commission from for each purchase originating from this site.

When purchasing from, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » UPDATE- IDSA/ACR/AAN Draft Comments- UPDATE

 - UBBFriend: Email this page to someone!    
Author Topic: UPDATE- IDSA/ACR/AAN Draft Comments- UPDATE
Honored Contributor (10K+ posts)
Member # 5829

Icon 2 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
August 16, 2019

Heard back from the IDSA/ACR/AAN again after submitting another request and...

1.) We are now able to cut and paste sections of the document into our responses instead of having to type each line, paragraph or section we want to comment on. Whew!

2.) We will not get any additional days to respond (other than the 30 days we originally got when I asked for more days) making the latest deadline...

September 9, 2019 at 5:00 PM.

3.) I asked who specifically would see our responses because only two panel members dealt with each question posed in their draft.

QUOTE- "While the guideline questions were divided among the panel members for the purposes of developing the draft, every member of the panel will be provided all of the feedback from the public comment phase and will update the draft if needed."

4.) They claimed to have had three patient representatives on the panel, however, nothing is listed about them anywhere, including giving them credit in the author's section of the guidelines (highly unusual).

I asked why and was told...

QUOTE- "Finally, you are correct that the panel includes three patient representatives.

We greatly value their participation but have withheld their identities out of respect for their privacy, because listing their names would disclose protected health information about the patient representatives.

We will make their identities public only at their request."


Needless to say the people in the Lyme community I've heard from already have really poo-poo'd that last part. I will follow up on that.

I am sorry we couldn't get more days to respond, but I urge all of you to do what you can to make a short comment, or ten or twenty of them. Please!

More info at link below, and the letter from them is shared too (near the bottom).

To submit a comment please see info here...


Posts: 20332 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
Probably, three patients that took 10 days of doxy and they are all better.

All better but seeing a neuro, ID doc, rheumie, PT, and psych doc, for unrelated health issues.

Could not resist the sarcasm. We had our support meeting last night and heard another heart breaking story of years and years of torture.

Thanks TC.


"Never, never, never, never, never give up" Winston Churchill

Posts: 6405 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator

Quick Reply

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins

Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:

Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3

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, NJ 08534 USA

| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.