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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Keep Going

A friend wrote this to me –

Dear Lisa,

I don’t believe I am going to get better, and I don’t know what to do anymore. This feels like a nightmare from which I cannot wake up. I know people say to stay positive, but I don’t know how, especially when, every day, I read comments in the group with people who are several years out, and have not improved. I know people say everyone is different, but after more than a year, I have a feeling I am one of the unfortunate few that never recover. What should I do?

Here is my response –

Dearest friend,

I think that you should just keep going. That’s all that is really required of you, or anyone else – just not giving up. In not giving up you are being hopeful. Eventually, it will become easier to not give up. Eventually, it will be effortless. At least that’s what I hope for you.

I recently got an email from someone who recovered after 8 years. 8 years is frightening, for sure. But she recovered. It did happen.

I encourage you to find something that makes you feel just a little bit better. Maybe that’s sunshine, or funny movies, or acupuncture, or magnesium, or whatever – and do that thing every day until the little incremental improvements add up.

And just don’t give up.

Try to believe that it will get better. It’s okay to not always believe that you will improve. But as long as you’re not giving up, things will change. Maybe they will change for the better. I hope that for you!

That’s what I think you should do. I hope that what I said doesn’t seem to trivialize your situation in any way. I know that it’s scary and I know that fear that it won’t end is normal. I think that just continuing on is difficult sometimes. That’s what I suggest you do though.

Love,

Lisa

Post Script To All:

I wish you all healing, love, happiness, recovery and everything else that your heart desires.  I’m sorry that this whole ordeal happened to you.  I’m sorry for the pain.  I’m sorry for the suffering.  I’m sorry for the fear and the hopelessness.  I hope that it all passes.  I hope that you find your way back to health and happiness.

I know that sometimes it feels like it won’t pass, like you’re stuck in a hole and will never be able to crawl out of it.  It will pass though.  I can’t promise that you will recover completely, or that you’ll get your former abilities, or yourself, back.  But I can promise you that this difficult moment will pass.  It will change.  Eventually you will stop falling down the hole, and you will start to improve; to emerge.

When you emerge, you’ll have all sorts of gifts that you didn’t ever want.  Empathy and compassion for those with chronic, mysterious diseases, patience for yourself, faith in your resilience, etc.  Those things are possible.  They’re down that hole – look around and you’ll find them.

I am inclined to write trite sayings about this, and I’m not sure if they help or hurt.  Hang in there.  It will pass.  Breathe.  And just keep going.  That is my advice.

And know, in every part of your being, in every breath you take, that you are loved.

It helps.  I swear, it does.

Love,

Lisa

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I’m a little overwhelmed – it’s okay (xoxoxo) – I just want to let you know

I’m feeling a little overwhelmed.

This isn’t an altogether bad thing.  I’m overwhelmed because so many people are reaching out to me to ask me questions about fluoroquinolones.  This is great – it means that word is getting out about the dangers of Cipro, Levaquin, Avelox and Floxin.  It means that people are reading what I write and connecting their pain and/or chronic illness to their prior use of fluoroquinolones.  Though it’s scary and infuriating for anyone to realize that they have been poisoned by a prescription antibiotic, knowledge is power and I’m pleased to be part of anyone putting together the pieces of their health puzzle, and realizing the cause of their pain and suffering.

There are a lot of you who I need to get back to.  There are multiple emails in my inbox that need responses.  You deserve a thoughtful response and I promise that I’ll get to you as soon as I can.  I’m trying to answer FQ related questions and emails, while also trying to keep my job, maintain my relationships and continue to write.  It’s hard to balance it all.  I’m not doing a very good job at finding a balance right now.  I’m overwhelmed.

My main goal in starting Floxie Hope was to help people through their Floxing experience.  Part of doing that is responding to people when they reach out to me.  I will get back to all of you.  I promise, I will.  I really am sorry for my less than timely responses.  If it has been more than a week and I haven’t responded to you, please re-send me your email – or just send me a note saying that you’re waiting for a response.

When I do respond to your emails, please keep in mind that I really don’t want people to think of me as an expert.  I’m doing my best to put the pieces together.  I’m doing my best to be right.  I’m doing my best to rely on credible research.  But I have been wrong about many things in my life and I don’t want people to take what I say as gospel.  I promise you, I am quite fallible.  (I’m right about fluoroquinolones being dangerous, over-used, ill-understood drugs – that is well established – but I may certainly be wrong about some details and some of my assertions.)  My perception that others are thinking of me as an expert is somewhat adding to me feeling overwhelmed.  It’s pressure.  It’s pressure that I brought on myself, but I do ask that you keep in mind that I’m just a Floxie who is trying to put together the pieces and I don’t know all the answers.

To all of the people who are helping me – THANK YOU!  Thank you to everyone who responds to comments on Floxie Hope.  Thank you to all of those who take time out of their busy schedules to support fellow Floxies on the facebook support groups.  Thank you to my family, friends, coworkers, allies and associates for your support.  You are all appreciated!

I encourage all of you with fluoroquinolone related questions to join a facebook support group.  There are lots of friendly people in the groups who can answer your questions and help you out.  Here are a few of them:

Fluoroquinolone Toxicity Group:  https://www.facebook.com/groups/floxies/

Fluoroquinolone Poisoning Group: https://www.facebook.com/groups/616904631689613/

Surviving Antibiotic Adverse Reactions: Avelox, Cipro, Levaquin, Floxin:  https://www.facebook.com/groups/261231253984443/

That’s enough for this post.  I need to get to some emails.  Or work.

Thank you all for your patience!

All my best,

Lisa

Thank you for reading Floxie Hope!  I hope that all who read Floxie Hope gain insight, support, understanding and, most of all, HOPE.  If you would like to support Floxie Hope, all contributions will be greatly appreciated!  Click HERE to contribute to Floxie Hope.  Thank you!

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Happy Thanksgiving!

Happy Thanksgiving!

I hope that all of you have a wonderful Thanksgiving!  I hope that it is filled with love, laughter, good food, family, friends, joy, etc.  I hope that pain, sickness, anxiety, etc. are not at the forefront of your mind.  I hope that, despite the trials, tribulations, pain and suffering, you have things that you are grateful for and that you can focus your energy on those things, no matter how small they may be.

This Thanksgiving, I am thankful for the following:

  1. My health.  This is the first Thanksgiving since I got Floxed that I am as healthy as I was before I got Floxed.  I was okay a year ago, but I wasn’t 100% yet.  I’m 100% healed now.  It feels good.  I am immensely grateful for my healthy body and mind.  I will never take my health for granted again.
  2. My family.  I am lucky that I have a wonderfully supportive family.  They have always loved me, I have always loved them, and I am incredibly grateful for them.
  3. My friends.  I have gained some wonderful friendships over the last year.  A lot of those friendships have been with fellow Floxies who I only know through the internet.  Even though those friendships aren’t in-person connections, they’re still valuable.  I enjoy the camaraderie that I have with fellow Floxies.  I appreciate that there is a community of people who understand and support each other through the difficult journey of being Floxed.
    1. I am thankful that each of my Floxie friends is making it.  You guys are survivors.  Just putting one foot in front of the other is difficult for many of you, I know.  But I’m glad that you do it.  I’m thankful that you keep going, keep trying and keep fighting.
    2. I’m grateful for my non-Floxie friends too.  Your love, laughter, support and caring mean the world to me.
  4. FloxieHope.  I’m thankful for the success of this blog.  I don’t know how blog success is measured in blogger universe, but in my world, reaching as many people as I’ve reached since starting FloxieHope in June, 2013 is amazing.  I’m thankful that I have a platform through which I can reach out to people, share information with them, and let them know that they are not alone and that they will survive.
    1. I am thankful for all of the people who have written their recovery stories for FloxieHope.  THANK YOU and CONGRATULATIONS on your recovery!
    2. I am thankful for Chandler Marrs of www.hormonesmatter.com  for publishing some of my essays about fluoroquinolones on Hormones Matter.
    3. I am thankful for Arjun Walia of www.collective-evolution.com for publishing some of my essays about fluoroquinolones on Collective Evolution.
    4. I am thankful for everyone who reads FloxieHope.  Thanks.  🙂
  5. I am thankful for the journey.  All of it.  Even the crappy parts that were unpleasant at the time, I’m as grateful for them as I am for the good things.  Without any of it, I wouldn’t be where I am now.  I’d like to think that I’m doing alright now, so I’m thankful for everything that has led me to this moment.

Of course, I’m grateful for a million other things.  One thing that meditation has taught me is that I can find beauty and gratitude in the smallest things, even in the pleasure of the breath.  Those little things that I’m thankful for are too numerous to list.  Please know that I am thankful for them though.

I truly hope that you have a wonderful Thanksgiving!

Xoxoxo

-Lisa

 

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The Shame of a Pharmaceutical Induced Illness

I have noticed some shame associated with floxing.  I have felt plenty of shame.  I haven’t wanted people to know that I was sick.  I haven’t wanted people to know how I got sick.  I haven’t wanted people to know that I’m dwelling on being sick or that I’m participating in support groups.  I certainly have felt some shame associated with having mental health issues – a lovely part of floxing.  I have felt shame at how I dealt with getting sick – badly – something that I can at least partly attribute to my mental health issues that were caused by getting floxed.  I have felt shame about the fact that I can’t do the things that I used to be able to do.  I have felt shame about my anger.  I have felt shame about not getting better more quickly (and I am a fast recovering Floxie).  I have felt shame over the fact that I’ve changed, that I’m just different now.   Lots and lots of stupid shame.  I have noticed that other people seem to feel shame about being floxed too.  They use a pseudonym when participating in the support groups, or they ask for things not to be shared with their friends or family members.  Shame, it appears, is part of being Floxed, for many people.

I wonder where this shame came from.  For me, in some cases it was justified.  I really did deal horribly with getting sick.  I was anxious, had psychotic thoughts and sought validation of my sickness and thoughts of my impending death.  My family was worried – justifiably.  And maybe it’s okay to feel a little ashamed of the fact that I’ve dwelled on being sick.  It’s not healthy to have a sickness form your identity.  More importantly, it’s not helpful.  But I really shouldn’t have been ashamed of getting sick, or any of my symptoms.  It’s not my fault.  And the fact that you got sick is not your fault.  And I shouldn’t have felt ashamed at the pace at which I recovered.  My body, mind and spirit healed as fast as they could.  Yours will too.

Shame, I think, ultimately stems from fear that you won’t be loved.  That you won’t be loved as a sick person.  That you won’t be loved as a person who can’t run, or play football, or dance, or whatever.  That you won’t be loved as an anxious person.  That you won’t be loved as a person who isn’t as smart as you used to be.  That you won’t be loved as a tired person.  That you won’t be loved as a Floxie.  So you hide your sickness, your anger, your pain, and you feel ashamed.

I’m not sure what to say to any of you who can empathize with this post, other than stop it.  Stop feeling ashamed.  Stop hiding.  Stop being afraid.  And you may just find that you are loved just the way you are, busted tendons and all.

You are sick.  You are not broken.  You are not less.  You have nothing to be ashamed of.  You have no reason to hide.  You are loved.  Even if you are sick and scared and can’t move or think, you are loved.  You are loved by your friends and family.  Even if you don’t feel the love from them, don’t believe the love from them, you are still loved because love is within you.  You are loved.  You just are.

 

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Fluoroquinolone Toxicity Featured in the Movie “The East”

The-East-Movie-2013

Here is a link to the trailer for The East – http://www.youtube.com/watch?v=gHpT9B7e7-Q#

I saw the movie “The East” on Saturday night.  About a third of it is about floxing.  It’s not about the pros and cons of fluoroquinolones – it’s about the damage that fluoroquinolones can do – floxing.  In case you think that I’m projecting and imagining things, here’s a link to a Huffington Post interview with Brit Marling, the lead actress and co-writer of “The East” saying that, indeed, the pharmaceuticals that the villainous Diaoxin (or Danoxin, or something like that. Please excuse the lack of memory – I am still a Floxie) is modeled after is fluoroquinolones – http://www.huffingtonpost.com/2013/05/30/brit-marling-the-east_n_3354665.html.  Fun fact – she got the idea for using fluoroquinolones as an example of a pharmaceutical drug with horrifying side effects from watching the PBS Frontline segment on fluroquinolones, Levaquin specifically – http://www.pbs.org/newshour/bb/health/jan-june11/antibiotics_06-16.html.  Go PBS, Frontline, Jenne Wilcox, John Fratti and all the other people involved in the Frontline piece! You rock!

And a HUGE THANK YOU to Brit Marling, Zal Batmanglij, Ellen Page, Fox Searchlight Pictures and everyone involved in making The East for highlighting fluoroquinolones and the damage that they do!  Thousands of people who have been harmed by these drugs will undoubtedly thank you.  You never know, maybe The East will inspire change in the production or distribution of fluoroquinolones and the film will save lives.  It’s entirely possible.  THANK YOU!  (Assuming that they are not actually going to read my blog, I intend to actually write them thank you notes.)

The movie is a work of fiction, quite obviously, and I’m sure that they didn’t want to get into legal trouble, so instead of calling the culprit drugs by their real names (Cipro, Levaquin, Avelox and Larium), they call it Diaoxin.  All of the symptoms of the fake Diaoxin are real symptoms of fluoroquinolone toxicity. They include:

  1. Central Nervous System Damage, specifically brain damage
  2. Tendon Damage
  3. Seizures
  4. Tremors
  5. Pain
  6. Rash

I’m sure that there were other symptoms too that were either implied more subtly or that I don’t remember.  Toby Kebbell, who played the character of Doc, did an excellent job at playing a Floxie, with the nuance that implied the many different ailments that Floxies, unfortunately, suffer from.

Some other things that they got right in the movie that should be noted are the delayed onset of symptoms, the fact that a lawsuit is impossible, or at least difficult, because the side-effects are listed on the package insert, that these drugs are being given to our armed forces in massive quantities, that these drugs are toted as a miracle cure for anthrax, that these drugs are commonly used in Africa (and other places in the world where malaria is common) to treat traveler’s diarrhea and malaria, etc.  Really, they did an awesome job at portraying as complete a picture as possible of fluoroquinolones and their toxicity.

I have seen a couple of reviews that criticize the movie as being unrealistic. One critic, Kyle Smith of the New York Post wrote, incredulously, “This drug, by the way, will within days (take your pick) cripple you, cause seizures and/or give you brain damage — yet somehow it earns billions in profits because no one but the terrorists has noticed all of this. (Shouldn’t their beef be with the FDA for approving the drug?)” – (http://www.nypost.com/p/entertainment/movies/the_east_lacks_direction_qLIX80cFcmWnXxs5prD5HL) Mr. Smith, if I didn’t live it, I wouldn’t believe it.  I wish that I was still a believer in the medical system, as you obviously are.  But this attitude of worshiping the medical system and insisting that it can’t be broken is, unfortunately, actually contributing to its destruction.  Listening to people’s stories, because they matter, and doing what is possible to fix the situation, will do more to save the medical system than the woefully underfunded and inept FDA is even remotely capable of.  And don’t for a second think that the real people who have really been effected by these real drugs don’t have a beef with the FDA. WE DO!

The East is a fairly mainstream movie that is getting generally good reviews.  People are going to see it. Most people will assume that the drug is entirely fake and that the symptoms are made up and too horrifying to believe.  I only wish that was the case.

I hope that The East will encourage public dialogue about fluoroquinolones and the harm that they can do.  Maybe that dialogue can keep people from being hurt in the future.  Let us hope.

 

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