Tag Archives: Floxie

The Term “Flox”

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.

*****

Podcast Participants Wanted

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There are 15 episodes of The Floxie Hope Podcast available at http://www.floxiehopepodcast.com/ and https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010. Each interview on The Floxie Hope Podcast is valuable and informative, and I encourage each of you to listen to the stories of your fellow floxies by downloading the podcast.

So far, episodes of The Floxie Hope Podcast have been downloaded 14,500 times. Thank you to everyone who has listened to the podcast!

Unfortunately, I’ve gotten a bit lazy when it comes to recording and releasing new episodes of The Floxie Hope Podcast. I’d like to change my momentum, and start putting up new podcast episodes again. If you are interested in being interviewed for The Floxie Hope Podcast, please reach out to me. You can reach me through this Contact form (please note in your message that you are writing because you’re interested in being on the podcast):

Everyone who has a fluoroquinolone story to tell is welcome to be on the podcast. Though I think that listeners appreciate tips and advice, you don’t need to be recovered in order to share your story on the podcast. All are welcome.

In addition to stories from floxies, I’d also love to interview the loved ones of floxies. If a spouse, child, parent, or other loved one of a floxie wants to be on the podcast, I’d love to interview them too.

I’m available to do interviews most evenings and weekends. If you’re interested in sharing your story on The Floxie Hope Podcast, please let me know. Thanks, and I look forward to speaking to you!

 

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1,000,000 Views!

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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:

“Thank you so much for all you have done and continue to do on behalf of us floxies worldwide. Your guidance, insight and determined spirit helped me through so many dark days at the height of my illness. Where there was no good advice or hope, you provided the light of both. It’s been nearly 3 years since I suffered my reaction, and even though I didn’t think I’d ever get better…here I am, happy and healthy. Thanks again, you’re a rockstar and help people more than you understand.”

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.

 

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Floxie Hope Podcast Episode 15 – Richard

Richard Floxie Hope Podcast

I had the pleasure of interviewing Richard for episode 15 of The Floxie Hope Podcast. Please check it out –

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

http://www.floxiehopepodcast.com/episode-015-richard/

At the age of 23, Richard was “floxed” by a single pill of Avelox (while he was also on NSAIDs). For the following 4 months he was acutely ill, and for ten months following that he was slowly recovering. Richard goes over his journey through fluoroquinolone toxicity in the interview – what helped, what hurt, and what he learned along the way. He has excellent advice to share with all of you.

Thank you very much for listening!

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In Memory of Dr. David Flockhart

On November 26, 2015, the floxie community lost Dr. David Flockhart, M.D., Ph.D., a beloved physician and researcher who passed away at his home in Indianapolis, surrounded by his family, after a year-long struggle with an aggressive form of brain cancer called glioblastoma multiforme.

Dr. Flockhart was a beacon of hope for many people dealing with fluoroquinolone toxicity. He acknowledged the harm done by fluoroquinolones, and was able to help hundreds of floxies with both his vast knowledge of the harm that fluoroquinolones do, and personalized treatment protocols. His floxed patients loved him for his caring bedside manner and he was considered by many to not only be a physician, but also a friend. He will be missed by many.

A lovely obituary for Dr. Flockhart can be found here – http://sideeffectspublicmedia.org/post/remembering-david-flockhart-md

From the above obituary, it is noted that, “Over the course of his career, he (Dr. Flockhart) became one of the world’s foremost authorities on drug interactions and reactions. Patients from around the nation sought his opinion when other doctors insisted they were simply imagining or inventing sometimes painful and debilitating side effects.”

Dr. Flockhart spoke out to the media about adverse effects of fluoroquinolones. He noted in the PBS Newshour Frontline expose, “Certain Antibiotics Spur Widening Reports of Severe Side Effects” that, “You don’t use these big guns, if you like, for killing mosquitoes, for little limb infections. You should use them appropriately for big infections that they’re useful for.”

Also, reported in the Washington Post article, “It Pays to Read the Warnings When You Open Up a Prescription,” “’The vast majority of physicians don’t even know how to report side effects to the FDA. They don’t have a clue,’ says David Flockhart, head of the Department of Clinical Pharmacology at the Medical School of Indiana University. ‘And there’s a psychological resistance to believing that what they’ve done has hurt.'”

Dozens of other quotes from Dr. Flockhart about fluoroquinolones can be found throughout the internet.

Dr. Flockhart didn’t only focus on fluoroquinolone toxicity. His career in research and medicine had many facets. He was a pioneer and leader in the field of pharmacogenetics, the understanding of how an individual’s genes affect his or her response to drugs. Additionally, “He published more than 250 articles, reviews, and book chapters, and was a member of many prestigious professional organizations. He received numerous awards, including the Leon I. Golberg Memorial Lecture Series Award from the University of Chicago, the Rawls-Palmer Award for Progress in Medicine from the American Society for Clinical Pharmacology and Therapeutics, and the Nathaniel T. Kwit Memorial Distinguished Service Award from the American College of Clinical Pharmacology.” (quoted from his obituary)

Candy Markman, a past board member of Amnesty International’s U.S. section and a personal friend of Dr. Flockhart noted that, “He was an enormously compassionate human being who really respected other human beings.”

My condolences to Dr. Flockhart’s family, friends, patients and associates. He is missed.

 

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Posts Written by Floxed Friends

Many of my floxed friends have blogs.  Links to their blogs can be found on the “Links and Resources” page of this site.  I thank them very much for telling their story and for their words of wisdom!  All of you are very much appreciated!

Some of my floxie friends have also submitted posts to web sites that are not devoted to fluoroquinolone issues.  I wanted to keep track of them, so I’m putting them in this post.  This post will be updated as posts are added.  If you want anything to be listed on here, please let me know through the “Contact” link.  Thanks!

Emily Dodson-Murphy, “How Many Doctors Does it Take to Fix a Shower?  A Tale of Fluoroquinolone Injury” on Hormones Matter

Emily Dodson-Murphy, “Becoming the Person I Hoped I was” on Hormones Matter

Debra Anderson, “Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About” on Hormones Matter

Patti Ireland, “The Doctor Said Not to Worry About Levaquin Warnings” on Hormones Matter

Bobbi Jo Stellato, “A Fragmented Balance: Life Post Cipro” on Hormones Matter

Janet Murray, “Fluoroquinolone Neuropathy Feels Like Acid Burning and Electricution” on Hormones Matter

Destini Bates, “A Long and Complicated History Topped by Levaquin: Please Help” on Hormones Matter 

Floxed, “Cipro Ain’t Sexy: Fluoroquinolones Tanked my Sex Drive” on Hormones Matter

Erin Wilson, “Fluoroquinolone Recovery Brought to you by Nature” on Natural News 

Erin Wilson, “Levaquin, Cipro, Fibromyalgia and Leaky Gut – The Missing Link” on Natural News 

Erin Wilson, “Levaquin and Cipro’s ‘Dirty Little Secret’ Sexual Dysfunction” on Natural News 

Erin Wilson, “Levaquin and Cipro – The Descent into Madness” on Natural News 

Erin Wilson, “NEW FDA WARNING for Cipro, Levaquin, Avelox – Permanent Peripheral Neuropathy – Mixed Emotions” on Natural News

Erin Wilson, “The Reality of Fluoroquinolones – Or, How I Became Disabled Over Night” on Natural News 

Erin Wilson, “Fluoroquinolone Toxicity for Dummies” on Natural News

Andrea, “Did I Get Floxed?” on MTHFR Living

Ruth Young, “In the Valley of the Shadow of Death” on Pictures of Cats

Sarah E. Flynn, Ph.D., “Postpartum Fluoroquinolone Toxicity” on Hormones Matter

I have many posts on Collective Evolution and Hormones Matter as well.  I thank Hormones Matter, Collective Evolution and Natural News for highlighting the dangers of fluoroquinolones!

Please let me know what needs to be added to this post.  Thanks!

 

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Missing Emails

I received about a dozen emails from people who reached out to me via the Floxie Hope “Contact me” page between February 17th and 20th.  I read the emails on my phone and noted that I needed to get back to those people.  When I went to respond to the emails, all messages that I received from the 17th through the 20th were gone.  They weren’t in my inbox.  They weren’t in my deleted emails folder.  They weren’t in my spam folder.  They were just gone.

The sucktasticness of Yahoo mail is annoying.

I know that this is a really trivial thing to post about, but I wanted to put a note out on a forum where people could access it easily to let those who wrote me know why I didn’t write them back.

To those of you who are waiting for a response – Can you please email me again?  I’m sorry for not being responsive!  I truly do try to respond to every email that comes to me.  I was looking forward to responding to each of you because I remember reading interesting insights and observations.  Now I no longer have your email, or your email address, and therefore my ability to converse with you is hindered.

It was suggested by a friend that I ask the NSA for copies of the emails that have disappeared.  Hahahahhahaha!  That would take a while.

I don’t think that I’m on the radar of anyone who would want to steal my emails in a nefarious way.  It would be nifty if I was, but I doubt that I am.

Anyhow, I opened a new gmail account with the hope that it will be less annoying than Yahoo’s mail system.

When I went to forward all of my old conversations initiated through floxie hope to the new gmail address, many of them were missing.  It’s probably just a glitch in the yahoo system, right?  Or the sucky way that yahoo organizes emails that are from a similar address kept me from finding the emails that I was looking for, right?  No one is messing with my email system and stealing my emails, right?

NSA peeps – can you please retrieve my emails for me?  :p

If someone is messing with my email system, they now know that I will blog about it and out them.  If nobody is messing with my email system (most likely) y’all know not to use yahoo mail because it stinks.

And floxie friends – be hopeful.  That’s all.  Be hopeful.  Recovery does happen for many.

And once you feel better and completely recovered you can worry about trivial crap like missing emails instead of wondering about whether or not you’re going to die.  It’s kind of nice to worry about trivial crap.

🙂

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