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.
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1,000,000 Views!
Floxie Hope just surpassed ONE MILLION views! Whoo hoo!
A lot of people have learned about fluoroquinolone toxicity through reading the stories and posts on this site, and I’m pleased beyond words about that! From reading the stories and posts on Floxie Hope, thousands of people have learned about how fluoroquinolones can cause multi-symptom, often chronic, illness. It is a pleasure and an honor to be informing people and spreading the word about the dangers of these drugs. More than that, it’s a pleasure and an honor to be offering hope and support to people who are going through fluoroquinolone toxicity. Floxie Hope wasn’t started to raise awareness – that’s just a lovely byproduct – it was started to offer hope for healing to people going through fluoroquinolone toxicity. It was started to let people know that recovery is possible, and to tell them that they too can make it through the mess of fluoroquinolone toxicity. I hope that with each of the 1,000,000+ times this site was viewed the person visiting gained a little more strength, and a little more hope.
Healing is possible. Recovery is possible. Try to believe it. It can be difficult to believe that recovery can happen when going through the depths of fluoroquinolone toxicity, but keep trying. Keep believing that you will improve. You will.
I should acknowledge the people who don’t recover from fluoroquinolone toxicity, and I hope that those who are still ill after years of struggling, who know that they will never fully recover, realize that I don’t mean any disrespect to them. I think that hope is important for all of us, even those who are forever changed by these horrible drugs. We all need hope, even if it’s hope for tomorrow to be better, not hope for a full recovery.
This site has gotten far more traction, and far more attention, than I could have envisioned when I started it in 2013. What I’m more proud of than the 1,000,000 views mark though, is the community that has been built. More than 12,000 comments have been made on the home page of Floxie Hope, and almost 19,000 have been made on the site as a whole. In these comments you will find people asking for advice, and others responding with support and guidance. You will find people sharing their hopes, fears, remedies, insights, and warnings in the comments throughout this site. Knowledge has been built and gained through the community of people commenting on Floxie Hope. People have selflessly offered their time, expertise, guidance, advice, support, and LOVE to other “floxies.” This offering of love and support for other people, whom each commenter hasn’t met in person, is really beautiful, and I appreciate everyone who has commented and formed the community that is Floxie Hope.
I also appreciate everyone who has contributed their story to Floxie Hope! The stories of hope and healing are so valuable, and so helpful! Thank you to everyone who has written a story about their journey through fluoroquinolone toxicity, and recovery!
I recently received this lovely message from Josh:
I cried. That’s why this site is here. That’s why thousands of people have viewed this site, and hundreds have joined the Floxie Hope community – because hope is powerful.
Our stories are moving, and our truth is powerful. What happened to us matters and the louder we scream our stories – our truth – the more we will change the system. Progress has been made, but we still have a lot to do. There are still too many people getting hurt by fluoroquinolones, but hopefully that will change someday soon. Until the day comes when the madness of people being hurt by fluoroquinolones stops, we can stay here and offer help, hope, and community to those who need it.
Thank you to all who have made Floxie Hope. It’s all of us, together, making a difference.