Guide to Fluoroquinolone Facebook Groups and Pages

Updated: 2/18/2017

facebook-group

There are at least several dozen Facebook groups (may be 70 or more) dealing with the various aspects of FQ adverse reactions and toxicity.  Although it may seems subjective, I have rated some of the pages as to what my perceived usability is.   I use the legend below as a quick reference followed up by any pertinent comments next to the respective group’s title.

Open groups are more directed to public awareness and advocacy while closed groups deal mainly with various specific, personal and private issues associated the FQ problems.   Group’s status of open or closed will be noted in their description.

CLOSED GROUPS
groups that require admittance by an admin

Fluoroquinolone Toxicity 24/7 Live Chat Group

(https://www.facebook.com/groups/191063714251094/)

With over 3,300 members, this group is a community to exchange information,support one another and promote nonpartisan activism to advocate for FQAD victims. This is a closed group where members must request to join, and only members of this group will see your posts. This group can get colorful at times but in my opinion is one of the best for both newbies and veterans alike.

Fluoroquinolone Toxicity Group

(https://www.facebook.com/#!/groups/floxies/)

With well over 6600 members, this group is devoted to pretty much anything and everything you can think regarding Fluoroquinolone Toxicity. The description reads “We are all about positivity and supporting everyone whom joins this group.”  Many find this group too large and too disjointed, with many of the same issues getting rehashed over and over again.  You may find this group helpful for social support, but if you are looking for specifics, my advise is to avoid it as you will get inundated with a lot of unnecessary information. This is a closed group where members must request to join, and only members of this group will see your posts. This group is devoted solely to FQ victims and their family/friends that provide support.

Fluoroquinolone Induced Musculoskeletal Damage Group

(https://www.facebook.com/#!/groups/656341897795892/)

The primary focus of this group is to help FQ victims whom are suffering with musculoskeletal damage due to FQs. This includes anything joint, tendon, ligament, bone, connective tissue related. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.  This is a very low activity group with less than 400 members and mostly a mouthpiece for the QVF. Newbies would be better served by joining a larger group and posting your questions or concerns about muscular and skeletal issues there.

Fluoroquinolone Induced Vision Damages Group

(https://www.facebook.com/#!/groups/750106561713556/)

The primary focus of this group is to help FQ victims whom are suffering from vision/visual damages due to FQs. This includes anything from your vision, to retina damage, to visual snow/floaters, etc.  This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public. This is a very low activity group with less than 400 members and mostly a mouthpiece for the QVF. Newbies would be better served by joining a larger group and posting your questions or concerns about vision there.

Fluoroquinolone ADR – Floxed in June for Ladies

(https://www.facebook.com/groups/floxedinjuneforladies/)

This group is for all of the floxed ladies who are shy to post on feminine issues on the mixed groups. Floxed ladies are welcome to join. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.

FQ Male’s Only Group

(https://www.facebook.com/groups/595139243905692/)

This group is for all of the floxed men. Floxed men are welcome to join. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.

Fluoroquinolone Research & Discussion Group

(https://www.facebook.com/groups/115966251889165/)

This group is an information based group, where we post articles, research, and other things of the sort about FQ toxicity. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.  Posts are limited to research articles and discussion about research articles.  Research is limited to peer reviewed only.  This is not a group designed for general discussion and discussion is limited to discussing peer reviewed research articles.

Fluoroquinolone Victims Assistance Group

(https://www.facebook.com/groups/634738259900350)

THIS GROUP IS STILL IN THE PROCESS OF BEING SET-UP.  This is a group where floxies who are able to provide help of one sort or another can be matched up with floxies who need help. The vision of this group is one where funds are available to help floxies in dire straits as determined by a panel in a fair, transparent and objective way.  This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.  Hopefully this group will gain traction as assistance is sorely needed for many people.

Fluoroquinolone Twilight Zone

(https://www.facebook.com/groups/592093700809840)

This group focuses primarily on the terrible mental aspects of FQ Toxicity, both the cognitive difficulties like brain fog, memory loss, and painful headaches as well as the psychological troubles like depression, depersonalization, insomnia, anxiety, etc. It also supports folks that are in denial and need help with processing the illness. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.

Long Time Floxed

(https://www.facebook.com/#!/groups/204433513058121/)

This group is a group geared towards floxies who have been floxed for at least two years or longer. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.  Less than 400 members and moderately active.

Floxie Finder

(https://www.facebook.com/groups/222676757897021)

This group focuses on helping victims of FQ Toxicity find each other and meet up and form small regional groups. At some point, we will be able to have the strongest healthiest floxies in an area help the ones who are in bad shape. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.

Flox-Not

(https://www.facebook.com/groups/271668603000783)

This is a group created to escape the floxed life. This is a universe for floxies to talk about anything besides Fluoroquinolone Toxicity, politics, or religion. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public. Quirky and offbeat, but fairly active.

Christian Floxies

(https://www.facebook.com/groups/291818224294336)

This group is for Christians who have had adverse reactions to any of the FQ antibiotics. It provides encouraging and inspirational messages for members to get through their floxing. This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.  A small group, but active and uplifting.

Floxed Artist’s Group

(https://www.facebook.com/#!/groups/809404199124011/)

This group is for floxed artists to share their talents (both pre- and post-flox). We believe art can be a universal means of communication and that creating art or creating anything good or doing anything you love is good for the soul and a helpful way to heal from FQT. This group aims to offer support, insight, thought, inspiration, encouragement, understanding and networking. We are not victims, we are survivors and this is our art.  This is a closed group and requires administrator approval to join. All posts are only seen by members of that group and not the public.  This group has very few members (less than 50), at although the idea is great, the participation is very low.

OPEN GROUPS/PAGES

Fluoroquinolone Antibiotic Toxicity (Cipro, Levaquin, Avelox, Floxin)

(https://www.facebook.com/FluoroquinoloneToxicity)

To educate the public on this antibiotic toxicity and to inspire righteous activism. The drug companies downplay and minimize this toxicity. Thousands of us should not have had our lives destroyed by this class of antibiotics. Thousands more will have their lives altered in the future.

Fluoroquinolone Wall of Pain

(https://www.facebook.com/pages/The-Fluoroquinolone-Wall-of-Pain/209182505773463)

This Facebook page was created to help raise serious advocacy and activism. They hope to help warn and prevent others from suffering a severe toxic injury by putting a public face on the travesty of FQ toxicity..

 

MY  QUIN STORY SPONSORED GROUPS/PAGES

My Quin Story

Open Facebook Page designed to be the companion Facebook Page for the My Quin Story Website. Designed to spur thought and share ideas, this page is open to be ‘liked’ by anyone.  Help us recognize this world-wide travesty.

(https://www.facebook.com/MyQuinStory)

My Quin Story’s Hacking Fluoroquinolones

A closed Facebook Group dedicated to unraveling chronic fluoroquinolone toxicity syndrome.  We discuss what is working for those chronically affected.  We collect informal anecdotal data for FQ researchers. Our goal is to engage in intellectual discussions and to think ‘outside the box’ and see if there is any information that can be used to propose fixes, treatments, and/or narrow down options in a shorter time-frame. (to Join you must send me a message or email or already be friends with an established member.)

(https://www.facebook.com/groups/hacking.fluoroquinolones/)

Fluoroquinolone Genetics Group (currently closed and not accepting individuals)

A closed Facebook Group created to learn, gather data, research and discuss our personal genetics as it relates to Fluoroquinolone and subsequent health issues. Members are required to have had their genetics processed by a direct-to-consumer personal genomics service such as 23andMe, AncestryDNA and Family Tree DNA AND their data processed through an “interpretation-only” website, such as Interpretome, LiveWello, Genetic Genie, etc… The Admins prefer members have a LiveWello account so members can use their sandbox application and templates but that is not necessary.

(https://www.facebook.com/groups/FQGeneticsGroup/)