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 and many have less than 10 members) 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 and that have a membership to support conversation.   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.

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.  Due to the amount of people there is a lot of drama and some infighting, even occasionally between admins, so it can be something akin to a roller coaster ride.  You ‘may’ find this group helpful for social support, but if you are looking for specifics, my advice is to avoid it as you will get inundated with a lot of unnecessary information rehashed over and over and possibly caught up in the drama of others. 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.

Younger Floxies

(https://www.facebook.com/groups/911364578927712/)

For victims of fluoroquinolone toxicity 25 and under. Feel free to be yourselves here.This is a closed group and requires administrator approval to join.

Youngish floxies 25-40

(https://www.facebook.com/groups/1555926481321777/)

For us floxies around this age…. we know there is no age barrier to floxing but its good to hear of experiences and ‘wins’ from people not over 50 …like if you managed to get back out to the bars and to the gym etc …….feel free to add others if you can….its not another group for me to spend all my life on and im only apart of the main floxie group now….so feel free to add info as and when you please….This is a closed group and requires administrator approval to join.

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.

Skin & Health Therapies for Floxies

(https://www.facebook.com/groups/633594976753403/)

Repair skin, hair, nails and other health therapies for floxed survivors. Let us heal together.  This is a closed group and requires administrator approval to join.

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.

Faith Free Floxies 

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

Although not my cup of tea, this is a support group for atheists and agnostics who are recovering from toxic damage by fluroquinolone drugs. Our focus is sharing information about resources and practical therapies, and giving each other emotional support. This is a closed group and requires administrator approval to join.

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.

Floxies Uncensored

(https://www.facebook.com/groups/270212353163511/?ref=br_rs)

This group will be uncensored without fear of being ban from the page. You have every right to post what you think. Stay off this page if you can’t handle it.This is a closed group and requires administrator approval to join.

Floxies for the Medical Medium

(https://www.facebook.com/groups/1742225525989492/)

This is a place to discuss protocols mentioned in the Medical Medium book by Anthony William and how it affects those of us dealing with FQAD/illness.This is a closed group and requires administrator approval to join.


New England Floxies

(https://www.facebook.com/groups/123826181348026/)

This group is designed to be a place where floxies from New England can come together and connect.  This is one of the few regional or state groups that has enough members to support a good conversation but still has low activity. This is a closed group and requires administrator approval to join.

Floxies of IN, MI, IL, & OH

(https://www.facebook.com/groups/750354898324114/)

Hi! Welcome to the Floxies of IN, MI, IL, & OH group! This group is designed to help members with any particular issue, with a feeling of an answer from someone close to home! We can set up get-togethers being that we are close, and keep in touch with each other to form a more close knit opportunity! Best wishes to all of you in your journey to healing!  Low head count and no activity. This is a closed group and requires administrator approval to join.

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.

 

If you are a doctor, please consider joining the Hacking Fluoroquinolones Group listed below.

 

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 information for FQ researchers and work on research projects. We have several doctors in the group. 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.  This group is only open to those have been chronically impacted for two years or longer and consider yourself functionally disabled (to Join you must send a message to an admin.)

(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/)