7 Things You Should Never Say to a Floxie

This awesome, kick-a** post was written by my wonderful, thoughtful, irreverent, amazing, floxie friend Michelle. You can hear more about Michelle’s experience with fuoroquinolone toxicity on her episode of The Floxie Hope Podcast – https://floxiehope.com/2017/07/17/floxie-hope-podcast-episode-22-michelle/.

The Barefoot Aya

If there’s something that bothers me to no end, it’s when someone insults my intelligence. When people deny fluoroquinolone toxicity, an extremely horrible thing that happened to me, assume authority, and insult my intelligence, it’s probably the worst thing ever. Here are a few things you should never say to a floxie:

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25 thoughts on “7 Things You Should Never Say to a Floxie

  1. L May 16, 2018 at 7:07 pm Reply

    YES!!! AS for 2) yes, we DO have considerable knowledge because we have for the most part had to be our own doctors. One neurologist, whom I saw during my worst period, where it was all I could do to just sit in a chair, because I was in such incredible pain, I was down almost 40 lbs, I was gasping for breath, I felt like I was dying, and my vision was a mess (that’s the short list) had the nerve to put in my chart that I was DELUSIONAL and I had “pseudo medical knowledge.” And all he had to do was look on the damn computer sitting right there in the office. A NEUROLOGIST who had no idea, in spite of black box warnings, that Cipro could cause permanent nerve damage.

    And as for 4)…yes my “favorite” too. Not only because it ignores the sheer numbers (millions of injuries and hundreds of thousands of deaths) but because it somehow diminishes what we as individuals have gone through and continue to go through.

    Sadly, no one who has “been here” can know the horror, the pain, the mental anguish, the sheer twilight-zone-ishness of this.

    • Ian Harvey May 16, 2018 at 8:34 pm Reply

      I have learned that I know more about how to manage this better than any doctor I have ever met – and I have discussed this with a lot of different professionals. That isn’t me bragging rather it is a sad commentary on how little doctors know about what happens and how to try to manage getting floxed.

      • L May 17, 2018 at 2:20 pm Reply

        Oh I am so sorry you couldn’t ski again. Something I have mentioned before on this site for tissue injuries…tendons, meniscus, etc is prolozone injections. It is procaine and ozone and helps your body repair itself naturally. After the Cipro nightmare I never wanted standard AMA treatments again. My ND injected both knees with prolozone (I had been using a cane because the one knee was so painful) and three months later—no cane. I am now almost two years since the injections and so far so good. At least I know that I if there are more troubles ahead, I will go that route.

        I am in my sixties, but I was in GREAT shape before all this…even toying with training for American Ninja Warrior! Oh well.

    • Michelle Polacinski May 17, 2018 at 7:08 am Reply

      Psuedo medical knowledge…. gross! I call bullshit. I have had such horrible experiences with neurologists.

      • L May 17, 2018 at 10:07 am Reply

        Michelle, I was thrown under the bus by a dozen allopaths, but this neurologist was THE WORST. I told him I was ONLY there to have him interpret an ultrasound I had done. The only reason I even went to this guy was because of the aforementioned dozen, the only truly concerned one (while she still had such a lack of knowledge of flqs) referred me to him. I told him I was not there for any more testing or any examination (I was done with MDs by then and was safely in the hands of an ND who had treated floxies before me). He kept INSISTING, and I was so fragile, it was difficult to “fight back,” so I pretty much just sat there curled up, and cried, and gasped for breath and basically begged him for the results. Again, he had NO knowledge that flqs can cause permanent nerve damage. I explained how they were failed chemo drugs; I listed many of the side effects; I explained how they destroy at the cellular level, and on and on. I gave him information from Dr Charles Bennett, the drug researcher at U So Carolina. He had a damn computer right there. But no, he wasn’t interested in helping or learning. He was only interested in being right and playing god and lording over me. I ended up sending him an article from the Journal Neurology on the damage from FLQs with a little post it on the cover asking “ever heard of this publication?”

        • Ian Harvey May 17, 2018 at 10:18 am

          OK I have one for you all. I was at a ski race a while back and a friend introduced me to a guy who I didn’t know. The guy expressed interest in what had happened to me as a result of having had taken Levaquin.
          So, I told him that I took one bout of Levaquin (the normal dosage and time for a sinus infection) and then what happened over the past 10 years and counting with my tendons (chronic tendinosis and ruptures including achilles, posterior tibial tendon, peroneal tendon, and biceps tendon). I didn’t mention the other effects.
          He seemed baffled by the information and so I commented that these side effects are relatively common (I know a ton of people with issues like mine just not nearly as bad) and that there had been 3 black box warnings and class action lawsuits resulting in FQ products being taken off the market and then new ones introduced etc. The history is fairly well documented and known. Bayer, the manufacturer of Cipro and Avelox, even sent numerous letters to all doctors saying “do not administer this drug unless absolutely necessary”.
          Anyway this guy started saying, “No, that’s not true” about everything that I said and also told me that the incidence level is around 1/1000 people. He was not only super arrogant, but also was sorely misinformed. I challenged him and he to shut me down explained that he is THE infectious disease doctor/officer at the University of Utah. He then said that makes him the leading authority on antibiotics at last the state of Utah and one of very few in the US.
          I told him what I thought about a person as ignorant and misinformed as him being in such a position as to hurt thousands of people regularly. What a total loser.
          He later apologized to me months later after hearing about how the drugs affected me and my athletic career from other people. I hope though that he read up a little as the guy didn’t know anything about FQ risk and damage. Total arrogant guy with no knowledge as the main antibiotics guy in the state. Not much worse than that.

        • L May 17, 2018 at 11:41 am

          Wow. Well, I am surprised that he actually did apologize at last. The neurologist in my story not only never apologized, he doubled-down on everything. I ended up dropping off reams of papers on the damage flqs does. I tried to get my records I second time (lost the first ones) for a lawsuit, and he had his receptionist just give me pages with stats like my height and weight, and NONE of this notes. I think he was embarrassed after reading things I had left with him. I went back several more times demanding the notes, which is my prerogative, even offering to pay for them. He still wouldn’t give them, and after I told a couple in the waiting room to “run for your lives!” he threatened me with arrest if I ever went back to his office.

        • Ian Harvey May 17, 2018 at 11:50 am

          Ha ha that’s a good one. I went from being an Olympic skier to hardly being able to walk (still 10 years later). He is a skier and so heard more specifically who he was ridiculing. Then apologized…

  2. Ian Harvey May 16, 2018 at 8:32 pm Reply

    I am getting sick of “it’s tough getting old isn’t it?”. Like everything falling apart immediately and chronically has to do with that and not with the effects of the Levaquin. People mean well but what they are doing is totally disregarding the wel known well documented and horrible effects of a reaction to a FQ. Ticks me off even when I tell myself they don’t know any better.
    Hang in there friends

    • L May 16, 2018 at 8:44 pm Reply

      yes!!! that’s another one. It destroyed my knees (torn menisucus) and the first reaction was “oh, it’s age.” (just coincidental timing I guess.) Between the sudden huge weight loss and the damage to collagen it destroyed the skin on my body. “Oh, aging sucks doesn’t it?” IT WAS NOT AGING! arghhhhh. OH, and my vision. YEAH, your vision changes, but it doesn’t go from 20/20 to 20/60 overnight, with floaters so think it’s like looking through gauze! Thanks Ian, I needed to vent. 🙂

    • Michelle Polacinski May 17, 2018 at 7:09 am Reply

      Oh my gosh… *rolls eyes* I was 23 when I got floxed, so they couldn’t use that excuse! They just told me I had MS… How annoying!

  3. June Smith May 17, 2018 at 6:11 am Reply

    Even one of my daughters – who I love and she loves me – an adult, says: Mum, you are getting old – Yes I know that, but having a reaction to a Quinolone drug is not part of the normal aging process. I saw a Neurologist (Ontario) a few months ago and he said: Norflox.. I am not familiar with that, maybe many years ago! Well then, I thought, go back to the computer screen you have been looking at during most of the appointment and do a search. Honestly, I could write pages as I am sure everyone else can… WHY are they still making, selling and prescribing this damn drug???

    • L May 17, 2018 at 10:00 am Reply

      And the thing is, June, that the drug manufacturers fight every request for a warning, and if, after all the fighting, a drug finally does get pulled from the market….it is replaced with another, often more deadly one! If you are not familiar with this, back in the 90s, an investigative journalist, Stephen Fried, wrote a book called Bitter Pills, after his wife experienced a psychotic break from one pill of a quinolone. ONE PILL. She was “lost” to him for five years. That particular drug was pulled, but so many have come to take its place, and with the addition of the fluorine molecule, making it even more dangerous.

      • June Smith May 17, 2018 at 12:01 pm Reply

        Thank you … I did buy that book when I had the reaction and have had it sitting on my bedside table for almost two years. Recently I put it away and cant put my hand on it right now. I read several chapters and as far as I recall I had been given, and had taken, the same medication. Mine was Norfloxacin Oral ten x 400mg tablets. Cost was about $12.00 although paid by my Plan. This after just a urine dip stick test, no Lab report. After I thought: a $12.00 prescription changed my life. Although raised never to write in a book I underlined many of the statements etc. I had nowhere to turn… when I went to my Doctor he looked it up in his big black book and said: side effects are nausea and headache!! Are you kidding me, I thought. He made an appointment to see someone to check my hands and feet – appointment was in 8 months. I stopped reading the book, for obvious reasons (distress) and , and after the author said he would not be writing specifically about those over sixty (I was 72)… and I thought one day I would read the rest. In the meantime relied on Internet etc. So as of July 4, 2016 this drug was not pulled in Canada. I had the side effects about ten days after finishing the prescription. Then, to boot, I found out the Pharmacy I had been dealing with for 15 years was dispensing a recalled Lot of this drug – had been recalled the year before…. a certain Lot, no reason given except Type II Hazard, by Health Canada. They Pharmacy could not or would not tell me if the pills I received were from the recalled Lot! I contacted Health Canada who were not helpful of course.. said Pharmacy did not have to keep or give me the lot number. So there it is.. double whammy. I have a new Dr. and new Pharmacy but find many medications still have to be checked on the Internet – for me to find out more about them before I put in my boyd. I suppose had I a lot of money and support I would have sued the Dr. – or tried to – but knew I was up against something much bigger.
        As far as I know it is still being prescribed. Blessings to all Floxies… and others who have had life altering reactions to drugs proven to be highly dangerous!

        • L May 17, 2018 at 2:25 pm

          That all makes me so angry! And the ignorance among doctors is just staggering. I actually contacted the author, Stephen Fried, because I had written a book based on a diary I kept. But I knew the chances of getting it published were close to zero (short of self publishing, which was not an option.) I asked if he would be interested in co-authoring it. He actually wrote back a very kind response saying he never wanted to write anything again re big pharma. Who can blame him!?

          Don’t know if you ever saw this video. This is out of Canada.

        • Barry Cameron August 3, 2018 at 9:31 am

          I live in Ontario and was prescribed Ciprofloxacin in Feb 2018 and ended up in the ER! Stiffness. aching joints, swelling, and severe feeling of unwell. I recovered fully (I thought), but it is now Aug. and experiencing severe arm pain, knee pain, joint discomfort, tremor, skin rashes, tinnitis, and numbness, tingling in extremities. I was recovering from shoulder tendonitis AND had just eliminated a Benzodiazapine (clonazapam) medication. NO ONE understands why I believe a med that I took months ago is causing my condition now. I just found this forum and it finally answers a lot of questions. Wishing you and hoping for a complete recovery.

        • June Smith August 3, 2018 at 11:24 am

          Reply to comment just received via my email…
          Trying to think back over my adult life and can’t believe the number of medications and antibiotics I blindly took in good faith….. am still taking, even with the warnings as have no choice. To me, it’s a very slow death. Don’t get me wrong, antibiotics and meds have saved lives, but it’s the overprescribing, unnecessarily prescriptions and wrong medications that I now feel was ignorance, misunderstanding or dr just wanting to write a script and get on to the next patient. Puppets of the drug companies ? Less doctors, less time to consider options for patients, less time to spend on discussing side effects… more and more patients with multiple medical issues and the drug companies just love it. We need more doctors, nurse practitioners, and TIME and less quick fix meds… just makes me cringe when I get a NEW med that says… do not take if you are allergic to any if the ingredients… ummmm?

  4. Michelle Polacinski May 17, 2018 at 7:11 am Reply

    Thank you for the reblog and telling me to check out these comments, Lisa! Rock on, fellow floxies. We got this.

  5. June Smith May 17, 2018 at 6:16 pm Reply

    Thank you for the video… I am in Canada but had not seen this. I found my Stephen Fried book so will have to reread the chapters I had read two years ago, as I dont think I took exact same pills… mine were Norflox. In any case, I agree, the drug companies are murderers and torturers and the doctors who prescribe/d these meds for simple infections etc are their accomplices. FDA and Health Canada ought to be ashamed! Knowing I will suffer this list of side effects, unnecessarily, for the rest of my life is almost too much. Damn them.

    • L May 17, 2018 at 7:13 pm Reply

      my sentiments exactly. all for a UTI. (and I have since gotten rid of one with NO antibiotics.)

      • June Smith May 17, 2018 at 7:21 pm Reply

        could u let me know how u cured uti with no antibiotic? i can show my email here if so, june
        sorry to go off subject

        • L May 17, 2018 at 7:45 pm

          it’s a bit complicated because the amounts change everyday (eg you start with very very high amounts of vitamin A and they are reduced each day for two weeks) , but a naturopath (especially a female one) should have the exact protocol. It involves high doses of vitamin A, Vitamin C, d-mannose and something from Herb Pharm called urinary system support. Sorry I no longer have the exact amounts.

        • June Smith May 17, 2018 at 8:03 pm

          ……thanks, thats enough to go on! Much appreciated.

    • L May 18, 2018 at 4:24 pm Reply

      I clicked on the first link and there is ONE bone I would like to pick…the “Dr Oz one” “you should never substitute medical advice from a television doctor who is more concerned about ratings and being a celebrity over consulting with a doctor who can actually examine you and look over test results.” I would take advice from Dr Oz over pretty much ANY MD I saw after being poisoned. Also, he is not just a “TV doctor.” He is a cardio-thoracic sugeon. And finally it really bothered my that she talked about him being slammed all the time for making claims without scientific evidence to back him up. THESE are the people (slamming) that are anti-natural, pro-big pharma, pro-AMA. I am not saying that everything he says is or is not correct, but please don’t start jumping on that “let’s bash all naturally inclined doctors.”

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