When I tell people about this site they often ask me what the terms flox, floxed, and floxie mean. I am not a lexicographer by any stretch, and these are not official definitions, but here are my answers:
Flox (noun): A shorthand term for the multi-symptom, chronic illnesses brought on by fluoroquinolone antibiotics that are referred to as Fluoroquinolone toxicity or Fluoroquinolone Associated Disability (FQAD).
Flox (verb): To be afflicted with fluoroquinolone toxicity or FQAD. The term “flox” is typically used in the past tense as “floxed,” as in, “I was floxed by cipro in 2011.”
Floxie (noun): A person who suffers from fluoroquinolone toxicity or FQAD.
The term “flox” comes from the names of the fluroquinolone antibiotics. All the fluoroquinolones contain “flox” in their names – ciproFLOXacin, levoFLOXacin, moxiFLOXacin, gatiFLOXacin, oFLOXacin, etc. As communities of victims of these drugs formed, people found it easier to say, “I’ve been floxed” or, “I’m a floxie” than to say, “I am going though a multi-symptom illness brought on by fluoroquinolone antibiotics.” Perhaps the term “FQAD” would have been just as easy to say as “flox,” but “flox” preceded “FQAD” by more than a decade and the term has stuck.
The earliest written record of the term “flox” that I can find is in Stephen Fried’s 1998 bestselling book, “Bitter Pills: Inside the Hazardous World of Legal Drugs.” In it, Fried describes his wife’s severe, primarily psychiatric, adverse reaction to ofloxacin, a fluoroquinolone antibiotic. Fried noted that the community of people who had been hurt by this class of drugs referred to themselves as “floxies” and spoke of their condition as being “floxed.” (EDIT/NOTE – Please see Mr. Fried’s comment below for correct information about the early usage of the term “flox.)
Most journal, and even news, articles don’t use the terms “flox” or “floxie.” They typically refer to the constellation of symptoms that “floxies” deal with as “adverse reactions to fluoroquinolone antibiotics” or they don’t refer to the syndrome as a whole at all, rather, they’ll list the symptoms that their featured victim suffers from, and then note that the victim attributes those symptoms to fluoroquinolone antibiotics. A couple news articles have used the term FQAD, as it was coined by the FDA, and is seen as a bit more official than “flox.”
In online communities new terms are often coined, and they gain traction in those communities. “Flox” is one of those terms. The terms “flox” and “floxie” are primarily used on the internet in support groups for victims of fluoroquinolones. The biggest Facebook group for victims of fluoroquinolones is The Fluoroquinolone Toxicity Group, and their url is https://www.facebook.com/groups/floxies/ (note the “floxies” in the url – it’s easier than https://www.facebook.com/groups/FluoroquinoloneToxicityGroup). Additionally, this site is one of the more popular blogs about fluoroquinolones, and it’s called Floxie Hope. The terms “flox” and “floxie” are used throughout blogs and support groups dedicated to fluoroquinolone toxicity.
People within the “floxie” groups and communities know these terms and what they mean and imply. The people in the “floxie” community know when someone says that they are “severely floxed” that it means that person is suffering from more symptoms than they can count or name and that they are likely bed or house bound as a result of their fluoroquinolone-induced injuries. Of course, everyone’s experience is different, and people are encouraged in these communities to further describe their pain and their experience, but it’s far easier to say, “I’m severely floxed” than it is to list dozens of symptoms then say that those symptoms were caused by fluoroquinolone antibiotics.
Some people really hate the terms “flox” and they particularly hate the term “floxie.” They see the terms as silly and flippant, and they see it as disrespectful to those who are suffering from fluoroquinolone toxicity. Fluoroquinolone toxicity IS a serious and severe illness, and it should be taken seriously by doctors, patients, regulators, and everyone else. It is not a joke, or something to be taken lightly. It is a life-altering, often disabling, syndrome. Fluoroquinolones have maimed and killed people, and fluoroquinolone toxicity should be taken as seriously as other multi-symptom, chronic, mysterious illnesses like M.S., Lupus, Lyme Disease, M.E./CFS, etc.
Neither “flox” nor “floxie” are particularly serious terms, and I empathize, and even agree with, those who see it as minimizing the seriousness and severity of fluoroquinolone toxicity.
But… sometimes terms just stick. Both flox and floxie are terms that have resonated with people in the community, and they have stuck. Many people find it easier to describe their illness as being “floxed” than to describe it any other way. It resonates with people more to say, “floxies unite!” than it does to say, “victims of fluoroquinolone antibiotics come together!” For the purposes that the the terms are used, they work well for expressing what people want and need to say. I don’t think that anyone who uses the terms “flox” or “floxie” mean any disrespect to the illness or the people suffering from it. In fact, most of the people using the terms are either victims of fluoroquinolones or those who love a victim of fluoroquinolones.
I am writing this post on a site called Floxie Hope, so I am, of course, somewhat biased. I like the term “floxie” and it has become part of my brand (if you can say that a blog has a brand). I think that the term sticks in people’s minds and it resonates with them. There is an understanding of what it means–at least within our community. The naming of this site was somewhat accidental–I was trying to figure out how to create a web site and this was supposed to be my place-holder site until I figured out the mechanics of blogging, then I was supposed to think of a more well thought out name for the official site, but then this site got rolling while named Floxie Hope, and 5.5 years later, it’s still going and here we are.
I hear the people who think that “flox” and “floxie” aren’t serious enough terms to connote the severity of fluoroquinolone toxicity. In a lot of ways, I think they’re right. BUT, I don’t think that the term has held this community back. We have made a lot of progress over the last decade. We still have a lot of work to do, but millions of people have become aware of fluoroquinolone toxicity and fluoroquinolone dangers over the last decade, and part of the momentum of this community is our shared language and our shared understanding of terms like “flox.”
The terms “flox” and “floxie” are ingrained in our community, and they are likely here to stay as long as fluoroquinolones are hurting people (I hope for the extinction of the term through the strict limiting of the drugs – but we’re a long way from that and it’s certainly a matter for another post). I think that the terms are doing more good (through ease of communication, bringing people together, and having terms that resonate with many) than harm.
I am hopeful that the terms “flox” and “floxie” will someday be so well understood and accepted that they make it into the dictionary. The only criteria for words making it into the dictionary is that they appear in edited text, so I actually hope that more journalists start using the terms “flox” and “floxie” in their articles. Having the terms “flox” and “floxie” in the dictionary would be wonderfully validating, and it would help to increase awareness of fluoroquinolone toxicity.
When I describe this site, I often try to tell the back-story and give the long explanation of how I was hurt by ciprofloxacin. Sometimes the person who I’m talking to says something like, “Oh, you’ve been floxed – that happened to my sister-in-law.” The word is getting out, and the terms “flox” and “floxie” are spreading. It’s a good thing. Awareness is one of the most important steps toward change, and short, easy-to-remember terms like “flox” and “floxie” help people to become aware of the dangers of fluoroquinolones.
I have no problem with the word floxie. It’s shorthand. I don’t want to continually say “a fluoroquinolone victim” or ” a victim of cipro.” Not quite sure why anyone would have an issue with it, other than perhaps the spelling (maybe floxee instead of floxie) Then it would be no different than say assignee, payee, muggee, etc
Thank You Thank You Thank You our Great Lady. Kudos again from here.
I thought “Floxie Lady” was a song by Jimmie Hendrix…
Please don’t tell me to sit at the back of the Flox Bus, but I came here due to listmembers who were floxed, yet I was given some pretty nasty anti-malaria medication that was the parent of the drugs we focus on here. It has always been my intent to cross over the damage done by malarial drugs with Flox since I see everything in a Continuum.
Actually, the term originally appeared in my first magazine story on quinolones and antibiotic safety, “Less than One Percent,” in Philadelphia magazine in April 1993. (Ironically, that is the same month my first book “Thing of Beauty” was published–and that book injected another word I made up into the English language: “fashionista.” It was a good month for word creation in the Fried/Ayres household.) Diane and I and other floxies were on Oprah in 1994–after one of her producers had a reaction to floxin–and they used the word on the air. By the time my book came out in 1998, people who had these reactions were using it: one had “floxed” put on her license plate for 1997 (I know this because her kids later asked her to get rid of the plate because her illness affected her driving, and she sent it to me.)
I luckily found this site in 2011 ,5 years after being floxed 6 times in three years. I’ve always received posts, unable to reply. It’s almost 13 years since being floxed. I learned so much here and also by researching on my own. I believe I was too damaged to completely ever heal. I have good and bad days. Sometimes I’ll have a great day. That’s rare. I’m here today to add additional injuries that have begun happening within the past three years. My teeth have been becoming soft. I’ve always had very strong teeth. I’ve also developed an issue with my heart. First regurgative valves and now my left ventricular function was 55% . before levequin As most of us I was extremely healthy and active. Very strong. I was happy. I’ve found myself sinking into depression , unable to get out of bed. I am angry as hell. Not just because this happened to me , but because it’s still happening to others. I want to scream at the top of my lungs each time I see someone say I’m 18 months out ?????? How has this happened. Why is it still happening to young healthy people ? Because Doctors have been to lax on their updating themselves on the poison they’re pushing. I’m sorry for venting. I know you all understand how frustrating this can be. I quit smoking 6 years ago I blew up with water and literally almost drowned. Until given diuretics. I believe whatever bit of levequin was left in my body was attacking the nicotine. When I quit smoking it began attacking me with a vengeance. I felt totally refloxed. My ankles have distorted themselves. They have gone back to normal except for the area of the top tendon. Thankful not to have torn Achilles tendons. Both shoulders totally shredded. To many issues to list. Magnesium C Since Calcium with D3 Serrapeptase I also do a shake that has 1950mg of nutrients to keep the liver healthy. Plus so many other vitamins. I use subliguals to ensure they go through my cheek into my bloodstream. I can say I felt almost normal for awhile. Yet the minute I stop doing this just to function. It’s a nightmare. I want to know opinions on signing legal documents when floxed for over a year, not knowing anything about the nightmare waiting for me. I felt myself besides horrible nightmares, tremors and the brain fog. I want to know how much levequin could have effected me that first year and a half. I signed legal documents to have work done on my house. My sister was dying from cancer and I signed paperwork. I know our brains are effected.. Does anyone know when that happens. The insomnia and all the things that were annoying. That I pray now we’re the worst things. 13 years of this I’m so tired of spending thousands of dollars on vitamins and minerals and supplements. I still even take colostrum 3 x,s a week. That really helped me joanneg. Still use pro biotic with oregano oil capsules anytime I feel a cold trying to get me. It still works. Lots of things still work. I’m just so very tired of it all. I see they figured out how it’s hurting people so badly. It’s able to get into the mitrocobia of the cells. I’m praying they’ll find out how to reverse it before to much longer. Even just stop it from doing more damage. I’m trying so damm hard to get better. I’ve done everything possible. I was also taking glutothione reduced. It actually helped somewhat. Point is all of these vitamins and minerals and supplements we take. Yet they barely get into our bloodstream. I need a Dr in NJ who knows how to help with this. Anyone please message me if you know of any. Jersey Shore area Thank you for listening. Praying for you all to get as healthy as possible. This should never had happened. Never. Fluroquonolones need to be banned Worldwide. They hurt millions to save a handful leaving them asking why they chanced it. I know if I was told life or death and I had to ingest levequin Cipro Avelox I would absolutely say a Hard NO and take my chances. It’s not enough that it physically destroys. It mentally destroys. The worst medication disaster in U.S. History… God Bless you Dr J Cohen for bringing this toxic poisons to light. Medicines supposed to help people not slowly kill them. Wishing you all the best possible health your able to get back too. I believe knowing what this can do sooner actually enables our bodies to flush it out faster. It also doesn’t begin to hurt us until you No longer take it. Years later it’s still hurting me.
worm, not work