Tag Archives: awareness

Floxed Friday – The Rise of Floxie Education

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
 
The following was written by Michelle: 

We’re in Los Angeles, home of the entertainment industry, the most prevalent researcher on Fluoroquinolone Toxicity, nostalgia, and the doctor that floxed me. Ahhh it’s good to be home… and it’s weird to be home.

We’re shooting two very important interview subjects out here and we are very excited about what’s to come. During every interview, we learn something new that we didn’t know before. Did you know that on certain tests that doctors have to take in med school, “Cipro” is the answer to “What do you prescribe for a UTI?”

That was the case back then, but it’s not the case now.

Before diving headfirst into the entertainment industry, I was on track for medical school. I attended a pre-med summer camp for interested high school students in Boston, where I wore pant suits and attended conferences with a coffee in my hand as if I were a full-blown adult.

In college, I took classes on Animal Behavior and Microbiology, auditing Immunology by accident, and making friends along the way.

A lot of these friends, but not all, ended up making it to medical school. I was eternally grateful when they flooded me with facebook messages, skype calls, emails, and texts asking me the details about what happened to me. They were both alarmed and very curious.

Early into med school, they didn’t know much about what to expect, but a few years later, those same people reached out to me again, “just to let me know” that they had just taken an entire lesson on Fluoroquinolone Toxicity Syndrome and that they were told only to prescribe fluoroquinolones in near-death situations.

Naturally, my former academic peers shared my floxed story with their classmates and later, I had messages from other friends in nursing school who learned about FQT/FQAD.

At Chowder Fest this year, a woman made a sly remark about my “intelligence” when I propped the door to the bathroom open with a garbage can and we ended up talking about Fluoroquinolone Toxicity Syndrome just for a girl who was peeing to raise her arm over the stall and scream, “Is that CIPRO?” She learned about it in a Biology class studying for her Bachelor’s Degree.

I know it’s hard to have hope if you’ve been floxed, particularly if you’ve shown no signs of improvement, but there is hope in education. There’s hope in the future.

We hope that once finished, we can use this documentary as an educational resource for doctors and other medical professionals alike. Just talking about it seems to spark awareness and hopefully, change.

Have a great weekend!

Best,
Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

*****

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.

*****

Fluoroquinolone Toxicity Awareness Friday

Today, Friday November 9th 2018, is the first Fluoroquinolone Toxicity Awareness Friday. Please join me, and other fluoroquinolone toxicity awareness advocates, in spreading the news far and wide about the dangers of fluoroquinolones, and the devastation and destruction that fluoroquinolones have brought to too many lives.

Mark A Girard, fellow fluoroquinolone victim and advocate, posted this on his Facebook page(s):

Please join in as we do all sorts of things to raise awareness about FQs. We chose the final Friday before Antibiotic Awareness Week (Nov 12-19) so that people remember what they saw or read or heard when they see something else about antibiotics in the media. This is a genuine grass roots effort to get the help we need and deserve and to prevent others from suffering similar damage. We are hoping people will reach out to the media, to government agencies, to their friends and families and so on. We will be discussing all sorts of things people can do and of course everyone is encouraged to contribute in their own unique ways. Use your skills and your imagination and help us to build an annual tradition that makes a difference in more people’s lives each November. If you want, you can continue with awareness efforts all week long with me, but we are hoping to get something going where we all do something on Friday, whether it is to tell your story on your timeline or to share a favourite article, newscast or meme. It’s a Horton Hears a Who situation so please take some time and add your voice to the shouting and maybe they will finally hear us loud and clear. Thanks!

Please feel free to copy and paste it into your status, or, if you’re Facebook friends with Mark, please share it. Or you can let your friends and family know about Fluoroquinolone Toxicity Awareness Friday by sharing this post.

Some suggested things to share are:

  1. Amy Moser’s VIRAL post, “This Antibiotic Will Ruin You
  2. Popular and influential news story – CBS Los Angeles, “Southland Firefighter Says Popular Antibiotic Poisoned His Body, His Life
  3. Popular and influential news story – WSB TV 2 Atlanta, “Local woman says popular antibiotic killed her husband
  4. In-depth investigative report – PBS Frontline Investigation, “Certain Antibiotics Spur Widening Reports of Severe Side Effects
  5. News story out of Europe – Daily Mail, “Antibiotics got rid of her chest infection – but Jane says they destroyed her health
  6. Story in the well-respected journal, Nature, “When antibiotics turn toxic
  7. New York Times column, “Popular Antibiotics May Carry Serious Side Effects
  8. Popular post on Floxie Hope, “FDA Announces that Permanent Peripheral Neuropathy is to be Added to Warning Labels for Fluoroquinolone Antibiotics
  9. Popular post on Floxie Hope, “New Study Finds that Ciprofloxacin Depletes Mitochondrial DNA
  10. Popular post on Floxie Hope, “Letter from Bayer to Doctors Regarding Cipro and Avelox

There are links to hundreds of other articles and news stories on the “Links & Resources” page of this site.

Please share these, and anything else that brings attention to the devastating effects of fluoroquinolones, on social media, with your friends and family, with influential news organizations, with politicians, etc. Get the news out far and wide – THANK YOU!

*****

The Bleeding Edge and Parallels with Fluoroquinolone Toxicity

Have you seen the documentary The Bleeding Edge? It’s a wonderful film about the hazards of medical devices that I highly recommend. It’s currently (August 2018) available on Netflix. If you haven’t seen it, please do. It is an eye-opening, thought-provoking, insightful, frightening film.

The Bleeding Edge features stories from people who have suffered adverse reactions to various medical devises and procedures. Victims of Essure, mesh implants, metal hip replacements, and robotic surgical procedures report the harm done to them by these devices and procedures in the film.

The Bleeding Edge is a stark and scary reminder that, unfortunately, too often doctors are not abiding by the Hippocratic Oath. “First, do no harm” has gone by the wayside as these products and procedures maim their victims. Compounding the tragedy of the harm caused by these devices or procedures is the fact that, in many cases, there are safer devices or procedures available that would have had the intended results that the patients (and presumably their physicians) sought. Tying a woman’s tubes is a safer method of permanent sterilization than Essure; ceramic hip replacements are safer than metal ones; physical therapy can strengthen the pelvic floor and relieve symptoms of incontinence as well as mesh can; and, a surgeon’s hand may be a safer tool than a robotic arm. However, these safer procedures were not performed on the victims featured, or on thousands of other people, because the entire medical system ignored their Hippocratic Oath. Doctors (or administrators or insurance companies) were swayed to use these newer less-safe methods by marketing, efficiency, money, or ignorance–and patients were hurt in the process. It’s not okay, and steps back toward the basis of medicine in the Hippocratic Oath are, sadly, necessary.

There are several parallels between the experiences of people hurt by fluoroquinolone antibiotics (i.e. “floxies”) and the people featured in The Bleeding Edge. The adverse reactions to Essure are particularly similar to adverse reactions to fluoroquinolones. Adverse reactions to Essure look, and seem to feel, an awful lot like autoimmune diseases. Likewise, fluoroquinolone toxicity looks and feels a lot like an autoimmune disease. Essure adverse reactions are often severe and they affect multiple bodily functions. The women who had adverse reactions to Essure often suffered from permanent disability, even after the metal springs were removed from their body. Likewise, even long after fluoroquinolones “should” be out of a person’s body, the effects remain. Unfortunately, both Essure and fluoroquinolone adverse reactions can be permanent.

Like those featured in The Bleeding Edge who suffered from the toxic effects of metal-on-metal hip implants, fluoroquinolone victims often experience psychiatric adverse reactions. Fluoroquinolones can induce many serious mental health symptoms, and the FDA recently added “disturbances in attention, disorientation, agitation, nervousness, memory impairment, and serious disturbances in mental abilities called delirium” as highlighted adverse reactions to fluoroquinolones. Fluoroquinolones can also induce psychosis. The patient featured in The Bleeding Edge that suffered from psychosis, tremors, and other serious mental adverse effects from a metal hip replacement, is an Orthopedic Surgeon himself, and he “said he would never have believed neurological problems could come from orthopedic devices, if it wasn’t for that experience, and now tests the cobalt levels of his patients if they complain of having Parkinson’s or dementia-like symptoms.” (source). The victims of metal hip replacements are often told that their symptoms are simply a result of getting older. Fluoroquinolones are given to people of all ages, but those who are over 30 are often told that their symptoms are from “getting old” not from the drugs.

None of the adverse reactions featured in The Bleeding Edge are what one would intuitively expect an adverse reaction to look like. Who would think that a type of hip replacement could lead to psychosis? Who would think that a sterilization procedure could lead to a permanent autoimmune/neuroimmune disease? Similarly, who would think that a commonly prescribed class of antibiotics could cause multi-symptom, chronic, illness that has a lot in-common with these illnesses brought on by medical device adverse reactions? It’s absurd and unbelievable. It’s true though. Adverse reactions don’t look like they are “supposed” to look. They aren’t intuitive and they aren’t easy to identify.

Hopefully The Bleeding Edge will reform how patients and doctors alike view medical device safety. I hope that it also reforms how people think about adverse reactions generally, and that recognition of the connections between adverse drug and device reactions and multi-symptom, chronic, “mysterious” diseases starts to enter mainstream consciousness.

Watch The Bleeding Edge. It is a great film that has a message that needs to be heard.

Sorry, I don’t know how to squeeze this in gracefully, but several of the victims featured in the film had their intestines fall out of their bodies post-hysterectomy via robotic surgery. Is that not one of the most horrifying things imaginable–to have your intestines fall out of your body? Aaaaaaagh!!! Floxies can at least be thankful that our organs generally stay inside our bodies.

Change Will Come

Ruth wrote this guest post. You can read Ruth’s story of fluoroquinolone toxicity in “Ruth’s Story – Cipro Toxicity.” You can also listen to Ruth’s story through her episode of The Floxie Hope Podcast. THANK YOU, for sharing your insight and wisdom, Ruth! 

There was a long period of time after I got floxed that I despaired of anything ever changing in the medical field. I didn’t think doctors would ever change their prescribing habits regarding fluoroquinolones and people would continue to be harmed as I was, until the end of time, basically. But I recently had an epiphany that brought the realization that not only will the overuse of fluoroquinolones stop, it is inevitable that it does stop.

It is true that America’s FDA is doing a poor job of keeping the public safe from bad drugs and faulty medical devices. But I believe that even if the FDA does not become the watchdog it should be, the needed changes regarding fluoroquinolones will come. Probably not as soon as any of us would like, but they will come.

Every summer I work as a pyro technician for a display fireworks company. I have to undergo training for this. I am kept abreast of the requirements of the ATF, our own industry, and our company. Our own company is stricter than the legal requirements as regards safe distances for spectators. Our own industry has made recommendations to improve safety which are also stricter than what the ATF requires. Sometimes these requirements can seem burdensome or inconvenient.

Why would a fireworks company and professional organizations made up of pyro technicians create their own stricter regulations, when it would be easier to just stick with whatever is legally required? Because sane and rational people want to keep the public safe. Yes, we want to put on a good show, make some money and no one in this world actually wants to have to work harder– but at the end of the day no sane and rational person would want to be responsible for injuring another human being.

I believe the doctors themselves and others working in the medical industry will in the end solve this problem, whether or not the FDA ever wakes up and provides some regulations for use of fluoroquinolones that have some teeth. I believe even the drug companies will reluctantly come around due to social pressure or fear of litigation. I believe this because if it happened in one industry it can happen in another.

New and stricter regulations regarding the transport, handling and use of display fireworks have been met with resistance. I don’t want to paint a picture that says every time a new rule is added everybody is happy about it and immediately gets on board with it. But I have heard the arguments for continuing the old ways and I know why they aren’t holding up, why changes are happening despite opposition. The arguments against changing how fireworks shows are done are the same ones that are used against changing how fluoroquinolones are prescribed. They are all flimsy arguments. Here’s my list:

  1. We’ve always done it this way.
  2. It’s easier to do it this way.
  3. It’s cheaper to do it this way.
  4. I don’t believe this really makes a difference for safety, because I personally have never seen anyone get hurt doing it this way.

Let’s take these one at a time:

We’ve always done it this way” simply does not hold up when the science says what you have been doing is not safe. In both industries those advocating for safety have science on their side. Also, it is mainly the older pyros and older doctors using this argument. As they retire, and young people coming in are trained in a different way, this argument will simply disappear. I have had young pyro technicians come to me and say that an older person on the crew showed them how to do something that was inconsistent with training they received. I confirm that they have to do it the way they were trained and I never get an argument from them.

The more experienced person may continue to argue on the basis of, “I have always done it this way,” but the younger person will distrust anything that goes against the training he or she received. I have heard of some medical schools today teaching about fluoroquinolone toxicity syndrome and cautioning students to avoid using FQ’s unless really necessary. These are second and third hand accounts, but if they are true this is a huge win for us.

Some of the older pyro technicians, sad to say, take themselves out of the picture by choosing to continue doing things that we know today are not safe. Doctors who simply refuse to believe in the dangers of fluoroquinolones and take those drugs themselves also may learn the hard way. I’m not saying people getting hurt should be celebrated, absolutely not, but every time the lesson is learned the hard way it is still learned.

It’s easier to do it this way,” does not fly either in the face of how much people can be harmed. In one case we are talking about explosives that, if they don’t go off in the sky where they are supposed to become actual bombs on the ground, and in the other case we are talking about medications whose side effects have been described many times as being like a bomb going off in the person’s body. The amount of voices speaking out on the horrors of fluoroquinolone toxicity helps our case because after people have read our stories they don’t want to risk FQ toxicity no matter how much the doctor may claim Cipro has a great record of safety and efficacy.

The informed patient is going to request that the doctor culture the infection and prescribe accordingly, rather than just prescribe the broad spectrum antibiotic because it is easier. Patients are refusing to take the atomic bomb of antibiotics when they might not need an antibiotic at all. Being handed Cipro and sent on your way without even knowing for sure you have an infection is not going to continue to be accepted medical care. Those of us who speak out to our friends and post about this here at floxiehope and on social media are part of that change, and we can feel good about that. The dangers are becoming known.

Customers can and do drive changes that improve safety. For a recent fireworks show we were informed that the sponsor had requested we follow recommendations by our own industry for distance between loaded mortars. They were actually asking that we follow California’s standards, even though the show was shot in Wisconsin. What reason could we give for not doing what the customer asked? It’s easier to be able to load all the mortars right next to each other in the old style racks than to skip tubes or use the newer ones that have the required spacing? That would have been our only reason to refuse that request: It’s easier to do it the old way.

But the sponsor was making the request because he wanted as safe a show as possible. When patients make requests of their doctors because they want to be as safe as possible the doctor cannot really make any argument that is going to hold up as to why he should not honor those requests. Today we are seeing customers of display fireworks companies taking the time to inform themselves about our industry and what we do! How much more so are patients today taking the time to become informed? In both cases it is happening because the Internet makes information about any subject easily available. When we speak out about our reactions to fluoroquinolones we are helping provide valuable information for others.

It’s cheaper to do it this way,” may seem to be a logical reason to resist changes. After all, companies need to watch their bottom line. But when it comes to a question of money or public safety, the need for public safety will eventually win. There may be a period of time during which companies can make some money while risking the health and safety of other human beings, but eventually that time will end.

People have a desire for self preservation. Whether it is pyro technicians experiencing danger from low breaks, round trippers and finale racks blowing up or patients experiencing or reading about bad ADR’s to a drug, people are going to run the other way when their life or health could be put in danger. Fireworks companies that buy cheap but unreliable product lose workers and have difficulty selling more shows without crews to put them up. Hospitals that use fluoroquinolones for every little thing lose informed patients. If I needed surgery I know where I would go for it, because I know of hospitals (a couple) that do not use fluoroquinolones. If I had to pay out of my own pocket I would do it, because my health and safety is that important to me.

I know of display fireworks companies that are now out of business after consistently focusing on the bottom line instead of safety. I believe the same will hold true for medical facilities, doctors and even drug companies that continue to put money ahead of human health and safety. The display fireworks company I now work for tests all their product and they spend extra money to get product that is going to perform as it is supposed to. They are rewarded for this not only with greater customer satisfaction for some really beautiful shows, but they attract more workers. Pyro technicians would rather work where they feel safe and know they are not putting members of the public at unnecessary risk.

I think the same holds true in health care. I used to work for a medical staffing company in physical therapy. Some companies I temped for definitely cared only about the bottom line, with very high productivity standards. I was so rushed that I knew I was not really able to provide good care, and that put patients and myself at risk. I stopped taking jobs for those companies. Companies that had compassion for both their patients and employees attracted the best workers and could even pick and choose, selecting the cream of the crop of therapists, doctors and nurses. Patient satisfaction went up. While some of the companies that had pushed so hard for productivity were being bought out, the companies that I most preferred to work for were thriving. Decisions made with concern only for the bottom line always come back to bite the companies making them right in the butt.

I don’t believe this really makes a difference for safety, because I personally have never seen anyone get hurt doing it this way,” was the excuse my own doctor used for prescribing Cipro to me for a sinus infection. She had personally never seen anyone have a reaction to Cipro. Well, that is anecdotal evidence and it’s weak. The medical community cannot on one hand say that mountains of anecdotal evidence that fluoroquinolones are harming people is not strong enough evidence and then use anecdotal evidence themselves for their continued widespread use. The changes the FDA recommended for the use of fluoroquinolones in 2016 were made for a reason. A panel of experts heard the testimony of those harmed and looked at medical research regarding fluoroqouinolones and made an informed decision. Making a decision based only on your own experience and observations is not an informed decision.

I say that change will happen in the medical field because in the pyrotechnic industry change is happening. When a change is recommended in how something is done it is probably because somebody got killed doing it the old way. People who want to be safe believe those recommendations even if they personally never witnessed an accident. The same will happen with doctors. Even if they never personally had a patient get floxed, they will follow FDA prescribing guidelines for FQ’s because they do not want to harm other human beings.

One thing that does stand in the way of this change is cognitive dissonance created by the very fact that no sane and rational person wants to harm another human being. As the evidence comes out that fluoroquinolones are insanely dangerous and that the side effects are horrific, long lasting and sometimes permanent, doctors do not want to believe that they put anyone through that. The fact that reactions are delayed means they most certainly could have severely harmed a patient and never known about it because the connection to the antibiotic was never made. It is going to be very hard for doctors to come to terms with this, and I think it is behind a lot of their strident claims that Cipro is “safe and effective.” They need it to be, because if it were not, then there is a good chance they have harmed those they meant to help.

A floxed friend recently shared her experience with an ER doc who tried to give her Cipro for a UTI without even culturing to confirm an infection. She gave him an earful and the expression on his face said that she got through to him. He was horrified. He will either now disbelieve her because he must to avoid a truth he cannot face (that he may have harmed patients) or he will do some research, find the truth, change his prescribing habits and speak to his colleagues. I believe that in time even this cognitive dissonance will be overcome and doctors will do what is right, follow the recommendations of the FDA, and stop prescribing fluoroquinolones in situations that do not warrant their use.

The fluoroquinolone catastrophe has gone on far too long. It can be discouraging to reflect on how many have been needlessly harmed. However, as I have observed changes happening in the pyrotechnic industry that, although sometimes opposed, do happen and do increase public safety, I have to believe that the medical industry is not immune to those same types of changes. I think if it were easier to sue for harm done by pharmaceuticals, that would actually be a good thing, because sadly, there are some people out there who are neither sane nor rational, but consumed with greed. Only one thing gets their attention, and that is losing money. There has to be more accountability for drug companies and doctors who prescribe dangerous drugs needlessly. I do believe it will happen and in the meantime, as we inform people about the dangers of fluoroquinolones we are playing our part in bringing about these much needed changes to the medical industry.

Progress Gained in Fluoroquinolone Toxicity Awareness

A lot of awareness of fluoroquinolone toxicity has been gained in the last few years.  In 2011, when I got floxed, the biggest facebook support group for “floxies” had about 600 members, news stories about fluoroquinolone toxicity were few and far between, and people seemed to be reluctant to share information about fluoroquinolones on their social media accounts. Today, the biggest facebook support group for floxies has almost 4,000 members (and many people have come and gone, so there have been more than 3,400 people who are aware enough of fluoroquinolone toxicity to join the group), news reports about the dangers of fluoroquinolones seem to come out on a weekly basis, and people are screaming about the dangers of fluoroquinolones in every way they can – through their social media accounts, telling their personal stories on web sites, commenting on news stories, and through talking to their families, friends, doctors and anyone else who will listen to them.

We’re making progress. We’re getting louder and stronger.

Even the FDA, the slow-moving behemoth that it is, has made some movement toward acknowledging the dangers of fluoroquinolones. In 2013 the warning label for fluoroquinolones was updated to note that PERMANENT peripheral neuropathy is a possible adverse effect of fluoroquinolones. The FDA stated that this change to the warning label was because of a review of AERS (Adverse Event Reporting System) data that found that many people were reporting disabling peripheral neuropathy as an effect of fluoroquinolones. AERS reports are patient reports. The FDA is listening to our screams.

The warning label change prompted a slew of lawsuits against Bayer (the maker of Cipro and Avelox) and Johnson & Johnson (maker of Levaquin), that hopefully will give some people justice and compensation for the harm that fluoroquinolones have done to them. Just having the door opened for justice is a step in the right direction – it’s progress.

In September, 2014 Dr. Charles Bennett filed two Citizen’s Petitions with the FDA asking them to change the fluoroquinolone warning labels to note “mitochondrial toxicity” and “psychiatric adverse effects.” The FDA’s response to those petitions is still pending, but the petitions themselves are valuable, both in that they are communications with the FDA, and that they give victims of fluoroquinolones credibility.

More than 60 news stories about the dangers of fluoroquinolones have aired in the last year. Each of these news stories was made possible by people reaching out to the news media. They wouldn’t have happened without people advocating for themselves and speaking up. With each news story, the word spreads about the dangers of fluoroquinolones, and the more people are aware of fluoroquinolone toxicity. With awareness of the dangers of fluoroquinolones comes avoidance of them, and that’s certainly progress.

One of the most influential news-stories about fluoroquinolones was “Local woman says popular antibiotic killed her husband” which aired on WSB-TV Atlanta. It had more than 135,000 social media shares, and Levaquin prescriptions in the Atlanta area dropped dramatically after it aired. It not only successfully spread the word about the devastating effects of fluoroquinolones, it changed prescription rates for fluoroquinolones. That’s huge! (Though, of course, it is horrible that Chris Dannelly lost his life. My eternal condolences to his family.)

A lot of progress in awareness of fluoroquinolone toxicity has been made through social media. When I first got floxed, people didn’t mention fluoroquinolone toxicity on their social media pages. There seemed to be a lot of silence, and even shame, around it. Now there are people who share information about the dangers of fluoroquinolones on their social media accounts regularly. With every “share” or “like” people are reached and progress toward awareness is made. Every little step rolls the ball in the right direction and gives us momentum. A huge THANK YOU to everyone who shares information about fluoroquinolone toxicity with their social network!

While it is sad to see the devastation that fluoroquinolones bring to every floxed individual, it is nice to see that the awareness of fluoroquinolone toxicity is reaching people, and that they are reaching out for support on facebook. The community of floxies helping and supporting each other in The Fluoroquinolone Toxicity Group has grown significantly. Each person who connects their health problems to fluoroquinolones is a step toward general awareness of fluoroquinolone toxicity. Everyone who joins The Fluoroquinolone Toxicity Group realizes the dangers of fluoroquinolones for themselves and their loved ones. Of course, I hate to hear of people getting hurt by fluoroquinolones, but with each new member to the group, awareness and support are gained.

Even this site has gained a lot of momentum. When it launched in 2013, Floxie Hope was getting about 5,000 visitors per month (which I was THRILLED with). Now 30,000+ visitors per month view Floxie Hope. I’m proud to be part of the movement toward awareness of the devastation that fluoroquinolones bring, and I hope to be part of movements to study fluoroquinolones and limit their use.

All of us who are telling our stories, supporting each other, and sharing information about fluoroquinolone toxicity are making progress. Thank you to all of you!

Admittedly, we have a long way to go before paradigms about the safety of fluoroquinolones shift in the general population.  There are still some doctors who are giving FQs out like candy.  There are still people who deny adverse effects of fluoroquinolones that are listed on the warning labels.  There is still a lot of research that needs to be done.  But progress has been made in the last year, and this post is to celebrate that progress.  Good job, friends!  Keep going!

 

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FQ Toxicity Awareness Wall of Fame

 

Some very influential medical professionals (doctors, scientists, pharmacists) have been speaking out about fluoroquinolone toxicity.  This post is to thank them and let them know that they are greatly appreciated!

Dr. Charles Bennett, M.D., Ph.D., M.P.P.

Dr. Bennett has filed two petitions with the FDA to get them to change the warning labels for fluoroquinolones.  One of the petitions is to get the FDA to add Psychiatric Adverse Events to the Levaquin/levofloxacin warning labelThe other is to have the FDA add “Possible Mitochondrial Toxicity” to the Levaquin Label.  The petitions have increased the credibility of “floxies” and have been featured in many of the news stories about fluoroquinolones.  If the FDA responds to the petitions by changing the warning labels for fluoroquinolones, it will be a huge “win” for those who have been hurt by fluoroquinolones.

Dr. Bennett has spoken out about the dangers of fluoroquinolones on many of the recent news stories about fluoroquinolone toxicity.  Here is one news story that Dr. Bennett was interviewed for:

Many others can be found on https://floxiehope.com/fluoroquinolones-links-resources/

THANK YOU DR. BENNETT!

Dr. David Perlmutter, M.D.

Dr. Perlmutter spoke out about the dangerous effects of fluoroquinolones in the NBC 2 Fort Myers, Florida report, “NBC2 Investigators: Thousands call for stronger antibiotic warning.”  Dr. Perlmutter noted in his interview that fluoroquinolones are drastically overprescribed, and, “I’d say there’s very little doubt it was directly related to taking those medications” when asked about his patient Jamie Laura’s debilitating symptoms.

Additionally, Dr. Perlmutter made this video about fluoroquinolones and peripheral neuropathy:

Dr. Perlmutter has more than 325,000 facebook “likes.”  He is a very influential neurologist who has been featured on The Dr. Oz Show, Dr. Mercola’s web site (and books), and other highly visible places.  He is the author of Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar–Your Brain’s Silent Killers and Brain Maker: The Power of Gut Microbes to Heal and Protect Your Brain–for Life.  For someone of Dr. Perlmutter’s status to be acknowledging fluoroquinolone toxicity is HUGE!

THANK YOU DR. PERLMUTTER!

Dr. Jay S. Cohen, M.D.

Dr. Cohen has been tirelessly studying fluoroquinolone toxicity, and writing articles about the myriad of adverse effects of fluoroquinolones, for more than a decade.  He is the author of the following articles:

Dr. Cohen recently said, “In my 40+ years in pharmacovigilance, FQs (fluoroquinolones) surpass Vioxx and Thalidomide in the degree of permanent harm done.”  If that’s not screaming from the rooftops, I don’t know what is.

THANK YOU DR. COHEN!

Dr. David L. Katz, MD, MPH, FACPM, FACP

Dr. Katz is a specialist in Internal Medicine and Preventive Medicine/Public Health, and the author of a textbook on evidence-based clinical decisions.  He noted in his Huffington Post article, “Your Doctor’s Knee-Jerk Reflex: How Not to Get Kicked” that:

“I recently saw and began treating a patient for the fluoroquinolone syndrome. Within just a couple of weeks, I heard from a friend who had classic symptoms of it as well, following treatment with Levaquin. In both cases, there was a valid indication for antibiotic use. But there was also good reason to doubt the need for such a high-powered, broad-spectrum antibiotic in both cases. Often, the easiest way for a busy clinician to be sure to “cover the bases” with an antibiotic is to go after a fly with an elephant gun. The collateral damage can, predictably, be considerable; a consequence of knee-jerk prescribing.”

That is very nice acknowledgement of fluoroquinolone syndrome and noting of the over-use of these consequential drugs.

THANK YOU DR. KATZ!

Suzy Cohen, RPh

According to her bio on Amazon, “Suzy Cohen, America’s Pharmacist is the author of 8 books. She is the co-host of a free worldwide event which you can watch from home called The Thyroid Summit.com.  Suzy has been a licensed pharmacist for more than 24 years, and she is a Functional Medicine practitioner. In addition to writing a syndicated health column, Dear Pharmacist, for the last 16 years, which circulates to millions of readers each week, Suzy hosts a medical minute on Know the Cause television. She has a Huffington Post blog. You may have seen her on the The Dr. Oz Show, The View, The Doctors, The 700 Club and Good Morning America Health. She has appeared in hundreds of magazines and television shows nationwide. Her books are translated into various languages. Memberships include: The American College for Advancement in Medicine, The Institute of Functional Medicine, The American Academy of Anti-Aging Medicine American Pharmacist’s Association, International Lyme and Associated Diseases Society.”

In her November, 2014 post, “I’m Going to Ruffle Feathers but I’ll Tell You Anyway” she noted:

“A few popular antibiotics affect DNA similar to some chemotherapy agents. If you’re sensitive to them, you could pay a neurological price that causes sudden and serious neuropathy and degrees of brain damage. The drugs that the FDA is concerned about belong to the fluoroquinolone class, and already have a black box warning for increasing the risk of tendon ruptures. But I’m telling you that more reports have come in with accusations of neurological damage. Personally, I would only use these for life-threatening infections that were unresponsive to older regular antibiotics. I wouldn’t take them if I had a regular old urinary tract or sinus infection.”

It is awesome that someone as influential as Suzy Cohen acknowledges the dangerous effects of fluoroquinolones!

THANK YOU SUZY COHEN!

Dr. Beatrice Alexandra Golomb, MD, PhD

Dr. Golomb’s C.V./resume lists her many accomplishments – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/About_Dr._Golomb.html

Dr. Golomb is conducting the Fluoroquinolone Effects Study through the UC San Diego School of Medicine.

A description of Dr. Golomb’s involvement with the “floxie” community can be found on www.myquinstory.info, “Fluoroquinolone Academic Research Update – Dr. Beatrice Golomb UCSD.

Dr. Golomb’s work brings an enormous amount of credibility to those who are floxed.

THANK YOU DR. GOLOMB!

Dr. Joseph Mercola, M.D.

Dr. Joseph Mercola  is a “family physician and founder of www.mercola.com with more than thirty million monthly views that help people find safe and inexpensive nutritional, lifestyle and exercise options to dangerous drugs and surgeries.” (per his bio on Amazon).  He has over ONE MILLION facebook “likes” and is highly influential.

The following articles about FQ toxicity were published on www.mercola.com:

Dr. Mercola has been instrumental in getting the word out about the dangers of fluoroquinolones.

THANK YOU DR. MERCOLA!

The medical professionals mentioned above are very influential (and even famous).  There are many other physicians who are speaking out about the dangers of fluoroquinolones, but who don’t quite have the reach that fame gives those mentioned above.  Their voices are important too though, and I encourage everyone to click on the following document that describes fluoroquinolone toxicity in the words of the doctors affected by it:

http://fluoroquinolonethyroid.com/wp-content/uploads/2014/11/FQ-Adverse-Effects-In-Their-Own-Words-from-Physicians.pdf

There are many other doctors (and other medical professionals) who have spoken out about the dangers of fluoroquinolones and I, as well as others in the “floxie” community, appreciate each and every one of them!  There is no way I could possibly include them all in this post and I will likely do a follow-up post featuring others who are speaking out about the dangerous effects of fluoroquinolones.  For now, a huge THANK YOU goes out to Dr. Bennett, Dr. Perlmutter, Dr. Cohen, Dr. Katz, Dr. Golomb, Dr. Mercola and Suzy Cohen.  You are all appreciated!

A list of doctors who have been favorably reviewed by fellow floxies can be found HERE.

We’re getting to the tipping point of awareness about fluoroquinolone toxicity.  Soon, it will only be the willfully ignorant doctors who don’t read warning labels or research articles, who don’t watch the news (story 1, story 2, story 3, story 4), and who don’t listen to their peers or their patients, that claim that fluoroquinolones are “safe and effective” drugs.  They may be effective, but they’re far from safe.  The doctors listed above know it, patients know it, all physicians should know it.

 

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Acknowledgement of Fluoroquinolone Antibiotic Toxicity

It is important to get acknowledgement from the doctors you are working with.

Though fluoroquinolone toxicity is not near as acknowledged as it should be, it’s not completely unheard of.  After all, most of the symptoms that people experience are listed on the warning labels.  Fluoroquinolone toxicity has also gotten some attention over the years, from Stephen Fried’s 1998 book, “Bitter Pills: Inside the Hazardous World of Legal Drugs,” to Nancy Edwards’ documentary, “Certain Adverse Events,” to the PBS Frontline special, “Certain Antibiotics Spur Widening Reports of Severe Side Effects,” to the dozen+ news stories about fluoroquinolone dangers done in the last month (linked to here).  Hundreds of media, blog, and peer-reviewed journal articles have also been written about the deleterious effects of fluoroquinolones (linked to here).

So, when a healthcare worker says, “I’ve never heard of reactions like that,” it makes me wonder, are they ignoring the warning labels, not paying attention to the media, or both?  (Yes, I know that my perspective is a bit biased and not everyone sees FQ toxicity everywhere, but it has been getting some genuine mainstream attention lately, and any doctor who prescribes these drugs should at least have his/her interest piqued by the stories and/or the existing journal articles.)

I suggest to everyone that they find doctors (or other health-care personnel) who, at the very least, acknowledge that fluoroquinolone toxicity is possible.  You can find a list of positively reviewed doctors here.

Fighting with your doctor for anything, much less a baseline of acknowledgement, is counterproductive to healing.  You don’t want to have that tension with the person who is supposed to be helping you.

Many Floxies have reported the relief they have felt when gaining acknowledgement of fluoroquinolone toxicity from a doctor.  In Diego’s Story, he noted that, “My doctors validating that LEVAQUIN did this to me” was one of the things that has helped him to heal.

Mike, a frequent commenter on this site, told me how great it was to hear from a doctor, “you are definitely floxed.”  And I appreciated hearing from him that his doctors told him that they read Floxie Hope.  🙂

Josh sent me this message:

“So, as I was telling you before, I had to schedule a root canal and was nervous about the procedure. When I went in to the dentists office, I filled everything out about my allergies to fluroquinolones and that I was under no circumstances to be exposed to them. Then, the doctor comes in and first thing she says is…

‘So I see you’re allergic to that poison that I would never dream of prescribing anyway.’

Can you imagine my relief? For about 5 minutes we talked about the adverse effects of quinolones and she assured me she would have never used them in the first place. As for the procedure itself, the first phase went very well (I have to get it finished in two weeks). I was given a lot of novacaine and she used eugenol (clove oil) to pack and seal the cavity temporarily and to bring down the swelling from a small infection in my tooth. I did experience a small flare (some mild muscle ache, nothing serious) for about 36-48 hours after the procedure. But 2 week out from the first phase, and 2 weeks until the second, my floxie symptoms are fine.

Please feel free to share the good news with the community that there ARE more and more medical professionals seeing things from the right perspective here! This woman is a very well respected endodontist in the Philadelphia area and she was just as adamant as I was about staying away from these drugs. Definitely encouraging news, and I felt like God really sent me her way to calm my nerves about the procedure and show that there are some doctors who know what’s up.”

It is noted regularly in The Fluoroquinolone Toxicity Group, a facebook support group for Floxies, that a doctor or other medical professional has acknowledged fluoroquinolone toxicity.  (Frustration with doctors not acknowledging fluoroquinolone toxicity is also noted often, and I suggest that everyone who experiences that try to find a new, more empathetic and educated doctor, if possible.)

Life is too short and precious to fight for the baseline of acknowledgement.

There is a lot of information about fluoroquinolone toxicity available.  Curiosity isn’t too much to ask for either.

The words, “I believe you,” are healing.  I hope that you all get that.  It’s more healing than any medication I can think of.

I’m really glad that more and more doctors are acknowledging fluoroquinolone toxicity, and how dangerous and destructive fluoroquinolones are.  To every doctor who acknowledges the pain and suffering of their patients going through fluoroquinolone toxicity, and especially to those doctors who don’t prescribe these drugs because of the devastation they bring – THANK YOU!

Acknowledgement, curiosity, knowledge, and caring will bring change.  When doctors bring those traits to their practice, they can change the lives of all of their patients.  The more doctors who see and acknowledge fluoroquinolone toxicity, and care about the patients who are suffering from it, the more quickly change will happen and the better the world will be.

 

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Are Dangerous Antibiotics Causing Chronic Illness?

Fearless-Parent_Dangerous-Antibiotics-Causing-Chronic-Illness_Featured3

 

I wrote the following post about fluoroquinolone toxicity for Fearless Parent:

ARE DANGEROUS ANTIBIOTICS CAUSING CHRONIC ILLNESS?

Please check it out and share it.  Thank you!

Fearless Parent is a great organization with lots of interesting articles on their web site, and many interesting podcasts.

I was interviewed on the Fearless Parent Podcast a few weeks ago.  You can get more information about the podcast, and listen to it, HERE.

For those who are parents, or who want to spread the word about the dangers of fluoroquinolones to parents, this post on Hormones Matter is a good one to share too – DON’T LET YOUR BABIES GROW UP TO BE FLOXIES.

Thank you for spreading the word about the dangers of fluoroquinolones!  I HATE that children are getting floxed.  HATE IT.  Perhaps, with awareness, we can keep some kids safe.

 

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