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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30 thoughts on “Progress Gained in Fluoroquinolone Toxicity Awareness

  1. rich August 19, 2015 at 5:37 am Reply

    300000 a month is a crazy number well done for your work lisa

  2. Elizabeth Lo August 19, 2015 at 6:10 am Reply

    Another great article! Thanks, Lisa, for bringing awareness to the dangers of fluoroquinolones.

    “One of the most important lessons in life is learning to turn what seems like senseless pain and suffering into something meaningful for yourself and others.”

    You have certainly done this.

    • Lisa Bloomquist August 20, 2015 at 4:31 pm Reply

      I love that quote, Elizabeth! Thank you for sharing it! 🙂

  3. Linda Livingston August 19, 2015 at 9:29 am Reply

    I agree Lisa that it is getting more attention. I notice a news article every week. Sadly, that means it is STILL injuring new people. I wish I had the same faith in the FDA that you do, though. As I said before—this drug doesn’t need new labels—doctors are NOT reading them. It needs to have its use restricted to life and death situations. As has now been mentioned a few times, side effects are NOT rare. The FDA had reports of 3,000 deaths and 50,000 side effects and it is estimated that those figures represent a mere ONE percent of what is actually happening. Cipro is on a list (wish I could find it now) of drugs in Europe that they are considering “pulling.”

    A friend was in a pharmacy a few days ago when she overheard that the woman ahead of her was getting a prescription for Cipro. She very nicely said “I’m sorry, I couldn’t help be overhear you are getting Cipro. You might want to google that before you take it.” The woman’s response? “Mind your own business!” Sigh. And I posted something the other day in response to some article from Huffington Post. It was only indirectly linked to Cipro but I put a warning in about it at the end. OMG! I got piled on. “Why would you want to take a drug away that helped us?” “Go back to school!” Get a life!” (I wish I could.)

    Still, I continue my crusade. I have now written Atty Gen Loretta Lynch (please do so—three letters from me mean nothing, but letters from a lot of people do—these mfrs need to be accountable for knowing for decades about the devastation of these drugs and marketing them inappropriately for simple infections); my reps in congress and a couple others; Dept of Health and Human Services; FDA (although I think that’s a lost cause. Google FDA, fraud and Slate.com for a great article on the rampant fraud and corruption there) the White House (President, Biden and Michelle) and anyone else I can think of.

    Thanks Lisa for another great article. You are my hero in all this. And if it hadn’t been for floxie hope I never would have known what hit me.

    • Lisa Bloomquist August 20, 2015 at 4:42 pm Reply

      The movement of all of us pushing this forward is making a difference. Every person you tell about how FQs hurt you is a step in the right direction. Even the “mind your own business” unquestioning pharma zealots hear us when we scream often and loud enough.

      Just knowing what happened is more helpful than words can describe. I’m glad I could help with that. 🙂

      Thank you for your support! You are appreciated!

      • Jason September 15, 2015 at 9:55 am Reply

        Great article Lisa, maybe there is some hope to try and shut down the corruption, I sure don’t have the stamina or stomach to fight this fight but I applaud everyone who does and especially you!

        Linda and anyone else pay no attention to the brainwashed naysayers, who still believe the Government, FDA, Doctor’s, Big Pharma etc have their best interests in mind. These are the same people who willing inject themselves with Mercury, Aluminum, Formaldehyde, etc with vaccines and will vehemently defend their right to do so and attack others who know its not in their best health’s interests.

        Sadly, my own family is in this brainwashed category, really 85% of the population is, the overall agenda to have people “lulled” and “stupefied” by fluoride in the water, chemicals in the food, neurotoxins in the vaccines, etc is basically working, that and people believe what they read from tainted sources such as the news, Wikipedia, Doctor’s etc. Its an uphill battle, but one worth fighting, in the case of my own family my poor 3 year old niece has Autism, and my Brother and has wife are so clueless they feed her Gluten, Dairy, lots of Sugar, its truly sad, and both her parents are not only brainwashed but extremely stubborn too. Again I don’t have much hope here, but my poor little 3 year old niece, a victim of bad Genes, vaccines, and now her parents, is worth fighting for, I feel so bad for her, I know how to help but parents won’t listen.

      • L September 15, 2015 at 11:26 am Reply

        How frustrating. Especially with the 3 year old, whose care is dependent upon others. I wonder if they could have their minds changed at least a bit by an integrative doctor, if you can find one that treats children.

        • Jason September 16, 2015 at 7:16 pm

          Thanks Linda yes a 3rd party “trusted” source like that could hopefully get through an idea or two to them, and I will keep dropping them a carrot here and there too 🙂

  4. Brian August 19, 2015 at 12:32 pm Reply

    You may have seen this already, but here’s a recent one from David Perlmutter–a fairly well known MD and author who straddles the conventional and alternative medicine fields: http://www.drperlmutter.com/dangers-fluoroquinolones/

    • Linda Livingston August 19, 2015 at 6:07 pm Reply

      I saw that—great. was going to leave a comment but didn’t want to add diskus. wish there were more of him. (Great he’s a neurologist too. Mine told me I was delusional, and I ended up sending him articles from the Journal Neurology (asking if he’d ever heard of it.)

    • Lisa Bloomquist August 20, 2015 at 5:12 pm Reply

      It’s a great video! 🙂 Dr. Perlmutter also was featured in this news piece about FQs – http://www.nbc-2.com/story/28971919/jims-story-change-headline#.VdZskSxVikr I wrote him a fb note thanking him for speaking out. He’s great and we need more like him!

      • Linda Livingston August 20, 2015 at 5:58 pm Reply

        I emailed a thank you too…to one of the contact links on his site. This speaking out needs to be appreciated and couraged!

  5. Ms. A August 20, 2015 at 12:56 am Reply

    Every time the media runs a story, the numbers in the group increase!

  6. Linda Livingston August 20, 2015 at 5:56 pm Reply

    I noted the name of the “apologist” for Bayer, who says at the end of the piece that Bayer cares so much about patients, and to contact your health care provider if you notice any side effects. That is so disingenuous since by that time the damage is already done, there is no cure, and the doctors don’t know what the hell to do with it (except say “no, stay on it–it can’t be the Cipro.” Anyhow, I just sent an email to her. If you would care to do the same it is rosemarie.yancosek@bayer.com

  7. Janine Allio August 24, 2015 at 6:56 pm Reply

    I took Cipro July 9th am now very painful joints. Three MD said I have POLYMYALGIA RHEUMATICA and must take a low dose of steroids! So, so scared…..

    Janea. August 24 2015

    Pain in arms now is so great I can not sleep!!!

    Sent from my iPad

    >

    • L August 24, 2015 at 8:09 pm Reply

      OMG, Janine. NOOOOO to the steroids!!! There are so few definitive things we know. One is that steroids are a toxic mix. That is why I was hit so hard—cipro and prednisone. I had excruciatin back pain that was worse than when I had 3 cracked ribs. I didn’t sleep for weeks. I finally got past at least THAT side effects after IV therapy. The pain was horrific, an felt like it was buried deep in the bone. I have NONE now. Please do NOT get steroids. I would find a trusted integrative doctor or naturopath. Please look at a lot of the posts here. Doctors will tell you you have arthritis, fibromyalgia, chronic fatigue, lupus, and on and on. (I am not saying they are always wrong, but coming so much on the heels of the cipro, I would be VERY wary of the diagnosis.) If you can find someone who does nutrient IVs I would do that. Are you in the U.S?

  8. Russell Nulty June 5, 2016 at 1:10 pm Reply

    Think our group “FQ toxicity group” is now over 5300! Thanks for all you do I suffered an aortic aneurysm over this poison….

    • Lisa June 6, 2016 at 10:16 am Reply

      The growth of the group is amazing! Like I said in the post, I have mixed feelings about it. I hate that people are getting poisoned. I like that people are banding together and supporting one another.

      i’m so sorry about your aortic aneurysm! If you want to share your story on http://www.fqwallofpain.com, please let me know. I manage it too. I can be reached through the contact link on this site. People really need to know about the dangerous effects of these horrible drugs.

      Regards,
      Lisa

  9. Karen October 31, 2017 at 3:07 pm Reply

    Today (October 31, 2017) I went to a doctor at UCLA with hope in my heart that he would help with the pain in my let caused by Ciprofloxin poisoning in August. I took 4 pills ended up in emergency unable to walk or use my arms. After horrifying bouts of pain in all my joints, hips, muscles, it settled in my right leg. I don’t know if it “ate” my tendons around my knee and under it, but now it is bone on bone! The doctor today refused to get on with surgery to replace my knee or even listen to me about the Cipro. He “was” going to give me cream for the pain but said “You are too allergic to everything.” So now I will still not be able to sleep due to the pain and I am in constant pain and cannot resume my normal life! His diagnosis (which is out of the blue since I never had pain before) was Rheumatoid Arthritis. And he said, “This doesn’t happen over night”. Okay….maybe not…but it didn’t hurt before AND how does he know how the cipro ate the tendons? I did everything before, including hiking. Now I am a lump. A fattening lump. I am seeking a doctor that understands and BELIEVES me. Doctors do not believe us……..sigh…. I have SIX close friends on crutches with cipro poisoning. One who got skin cancer from it and also had her eye muscle deteriorate and had to have surgery to pull the muscle up! I have written every medical board in the US, their response so far? “Our hands are tied.” Uh huh. How hard would it be to tell doctors not to prescribe except for the anthrax and plague it was designed for? I also wrote the Surgeon General. I also reported TWICE to the FDA and asked what yokels are passing these drugs and lets give them to them and their families!!!!! : ( Sorry….anger popped out with my popping joints…… Prayers out to all of you. Karen

    • L October 31, 2017 at 3:46 pm Reply

      Hi Karen, I was thrown under the bus by a dozen doctors after being floxed almost three years ago. I credit an ND with saving my life, but sadly his business is no longer open. I do however have an integrative internist in Thousand Oaks you may want to see. (He also offers IVs and hyperbaric) His name is Miguel Gonzalez. I go to him for everything and he is aware of Cipro poisoning. I don’t know where you live, but if this is too far, you may also want to check with Whittaker Wellness.

  10. Randy Whiteside January 10, 2019 at 11:57 am Reply

    Many of u may know Kathy’s story, R.I.P. MARCH 28, 2018. Since that time there has been front page coverage on fluoroquinolones & suicide. Interview with Tim Alexander documentary Legal Death-In drugs we trust. Interview with KFVS-TV (to air soon) meeting with CEO & Chief pharmacist, and a continued awareness on the adverse effects of fluoroquinolone antibiotics. After 9 months of looking into every possible way to fix what is broken. I have concluded the system as it stands (FDA BLACK BOX WARNINGS) chain to DOCTORS & PHARMACIST is very very broken. And then that chain to PATIENTS. Let me stop and ask: is there ONE person that is floxed if your providers had literally told u the meaning of BLACK BOX and the danger would u have taken a fluoroquinolone. HELL NO. Now, let me explain how the SYSTEM is broke. Yes the FDA when they issue a BLACK BOX WARNING they post it on there website. Does medical providers DOCTORS & PHARMACIST have access yes. Are they required by law to keep up with or even heed or do there due diligence, (NO). They (MEDICAL PROVIDERS) continue to do as they WANT. In my opinion THIS HAS TO STOP. Therefore I have taken the next step other than awareness. I have contacted a congressman I know. At this time are looking into FDA laws that can be enacted without legislation. I honestly feel this is a FIX to a huge problem of RESPONSIBILITY & liability. I know this may be a huge cross because of those two words. Responsibility& liability. But one worth pursuing. If u would like to join me in this pursuit please PM me.

    • L January 10, 2019 at 12:41 pm Reply

      Yes, it is an abysmal failure. Doctors do NOT stay informed, which is why we all get thrown under the bus when we go to them for help. When you go to a neurologist, who has NO IDEA that there are warnings about possible PERMANENT nerve damage, you know there is something very very wrong with how this information is communicated.

      Sadly, the likelihood of that changing anytime soon is abysmal. The head of the FDA, in fact the last several heads, have ALL had ties to big pharma. They do as little as possible so that the pharmaceutical industry’s bottom line is not effected. In fact, they, along with Bayer and J & J have fought warnings every step of the way, and it is only thanks to the persistence of groups like Public Citizen that ANY of these warnings have been applied. Drug Safety researcher Dr. Charles Bennett, who has also been instrumental, recently tried to get a warning put on regarding mitochondrial damage (which I think is perhaps most responsible for the lion’s share of injuries). That was denied by the FDA.

      This is why I encourage anyone, even knowing the incredible odds and the difficulty,to try to pursue legal action against the provider, and depending on state (country) laws, the pharmacy as well. Money seems to be the only language they understand. And also keep contacting people in power, the media, anyone you think might be able to continue to spread the word.

    • Karen January 11, 2019 at 6:46 pm Reply

      I am now facing surgery in both knees and my ankles/tendons of my feet will not be far behind. Before being floxed I was a healthy, very happy, human being! I told the doctor I DID NOT WANT TO TAKE THIS ANTIBIOTIC! HER ANSWER WAS “YOU WILL BE FINE.” Uh huh. When I was taken screaming in agony to the emergency room unable to walk, was THAT me being “fine”?
      I agree, money is the only thing the manufacturers, the pharmacies, the physicians, the media or anyone involved at the higher levels understand. I did not sue, but when my doctor told me that I need surgery to be able to walk again and not in pain, my first thought was, do I sue now? The danger now is, will my body be able to heal? That’s the other issue with being floxed. Should I wait for surgery? I am in so much pain with my “eaten” tendons…….Has anyone had successful surgery after being floxed? Scared…… Thanks.

      • L January 11, 2019 at 8:15 pm Reply

        Karen, are you absolutely sure you need the surgery? Post floxing I ended up with torn meniscus in both knees. I see an integrative MD so surgery was not his first recommendation. I ended up getting prolozone injections (not prolotherapy…same idea, different “ingredients”) I had been using a cane. now I am back to doing everything I did before. I got a second prolozone injection in one the knee about a year later. And if I have issues in the future I will get more. It allows your body to heal itself. It’s not a quick fix…takes a few months, but for me it was so worth it. There are also PRP (platelet rich plasma) injections as well. It can be done in pretty much any joint area, and is used not only for things like tendon ruptures, torn meniscus, etc but also areas damaged by arthritis. I got mine from my naturopath, but many sports medicine doctors now do them. I don’t know why you are having the surgery, but wanted to throw that out because it is minimally invasive, and far greater risks post surgery.

        • Karen January 12, 2019 at 10:44 am

          Thank you SO VERY MUCH for your information! I will check into it. Yes, I have the torn/worn meniscus in both knees and also in my ankles/tendons of my feet. This all happened immediately after the cipro.
          I can relate 100% with “wishing to die”. Every single day it is agony from morning to night. I avoid pain killers because then life would become an addictive fog…My next step was going to be two ceramic knees as I am ultra sensitive to any metals.
          The one thing that makes me have hope are when I hear from people like you…..
          Thank you! Karen

  11. Karen January 11, 2019 at 6:48 pm Reply

    PS and yes, suicide has been OFTEN thought of…..nonstop pain with no solution and living now off social security…..this whole thing is just sad, sad, sad……

    • L January 11, 2019 at 8:19 pm Reply

      I don’t know if you have seen any of my other posts, but I was severely damaged and side effects were nightmarish…quite literally gasping for each and every breath and asphyxiated by everything in the world. And couldn’t see more than two feet for months. Over 30 side effects. I prayed for death every day for the first year. In fact, I am sure I was having a heart attack one night and purposely did not call for help. I wanted out. (tests later showed I did have some kind of heart event). Now I am glad I am still here. I’m glad you’re here too. Please consider my post re prolozone, and ask if you have any questions.

  12. Karen January 11, 2019 at 6:49 pm Reply

    Pss…… Ciprofloxin AND Meloxicam. Two known poisons.

  13. Karen January 11, 2019 at 6:55 pm Reply

    Hello, “L”. Thanks. I will contact Dr. Miguel Gonzalez in Thousand Oaks. It is about three hours from me but worth it. I am currently seeing a doctor in Beverly Hills. I am on Medicare and pay extra for Aetna so I have coverage with health insurance now. My next step is double knee replacement and after that, something with my ankles. I never EVER had any troubles previously…until that fateful day….

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