The Silence Around Fluoroquinolone Toxicity

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I posted this – http://www.hormonesmatter.com/epidemic-silence-adverse-drug-reactions/ on Hormones Matter on October 17, 2013.  It was originally similar to the post below but I changed and edited it until it became what I submitted to Hormones Matter.  I still like the earlier draft and since it’s more Flox focused, I thought I’d share it on here.  As always, thanks for reading!

The Silence Around Fluoroquinolone Toxicity

One of the more bothersome feedback loops that keeps the dangers of fluoroquinolones from being recognized is that people stay silent about their pain and suffering, and therefore their pain and suffering is not recognized or appreciated, and everyone in the medical field gets to continue to think that these drugs are safe and that adverse reactions are rare. Seeing is believing and they don’t see it, in part because people aren’t screaming. Of course, there are people who are screaming at the top of their lungs about the pain and suffering caused by fluoroquinolone antibiotics who are systematically disregarded, and that’s a problem that has bothersome consequences and feedback loops as well, but it’s a topic for another post. This post is about people suffering in silence about the pain that Cipro, Levoquin, Avelox or Floxin has caused them.

People stay silent for a variety of reasons. There is a lot of shame associated with getting sick. People feel bad about what they can no longer do. They feel responsible for the role that they played in taking those pills, or insisting on them from their doctor, or administering them to their child, and they hide in shame. Also, a lot of the adverse effects of fluoroquinolones are CNS related, meaning that they can adversely effect many areas of mental health. People are notoriously ashamed and silent about mental health issues. It is easier to deal with anxiety, memory loss, depression, panic, etc. alone, in silence, than it is to speak up about what happened. After all, if you speak out about experiencing mental health issues, you run the risk of being labeled as crazy. Additionally, Fluoroquinolone toxicity takes its toll on every system in the body and therefore it is difficult to describe what is going wrong. How does one explain, to anyone, that EVERYTHING is going wrong? It’s too difficult and people sound and feel crazy, so they stay silent. When people ask their doctor about the possibility that the drug that they took caused the myriad of symptoms that they now experience, and the doctor denies that it’s possible that the drug that they prescribed could do what it has done, people assume that their doctor is right, or that they at least aren’t entitled to question their doctor’s expertise. After all, their doctor went to school for a long time and knows what they’re talking about… right? So people assume that they are wrong, their doctor is right, and they stay silent. There are a variety of other reasons why people stay silent about the travesty that is Fluoroquinolone Toxicity. All of them feed into the real risks of these drugs being under-recognized. The silence is, sadly, as much of an epidemic as the pain.

A friend of mine went to a Psychologist to help her to get through the mental and emotional trauma of being Floxed and she told me that, as she was telling the Psychologist her story, the Psychologist started to cry because a few years ago her (the Psychologist) knee swelled up and she experienced over-all tendon inflammation after taking Levoquin. When she asked her Doctor about it, her Doctor told her that the Levoquin couldn’t possibly be the cause of her pain. She knew differently but didn’t say anything. She recovered and didn’t think much of the period that she went through with painful, inflamed tendons much again. My friend’s experience and story validated the Psychologist’s pain, suffering and notion that Levoquin was the cause of her tendinitis, and it freed her to be able to acknowledge that she too was a victim of fluoroquinolone antibiotics. Before my friend visited her, the Psychologist thought that she was wrong, or the only one, or that her Doctor must know better, or that her story didn’t matter enough to scream about it – after all, she did recover – and she suffered in silence. She didn’t get the support that she deserved. She didn’t get the acknowledgment that she deserved. No one saw her pain and suffering because no one, including her, acknowledged that it existed.

I went out on a date a few months ago with a guy who was clearly Floxed but he didn’t know it until I told him my story. He had been treated with multiple types of antibiotics for a “chest infection” that was really acid reflux that was making him cough incessantly. He kept going back to his doctor for more and more powerful antibiotics because the mild antibiotics that he was given didn’t get rid of his cough – of course, because it wasn’t from an infection. His doctor eventually prescribed him Cipro and he had an adverse reaction to it. Most of his adverse reaction was mental (but he also lost his endurance and had an increased heart rate that he struggled to get down). He had a severe anxiety/panic attack and he thought that he was about to die. His sister flew to the U.S. from Sweden to be at his side because he thought he was dying. He lost his memory. He lost his composure and was barely able to do his job in software sales. He was clearly sick. But he stayed silent because he was ashamed of having mental issues. He never connected his sudden onset of mental health issues and the antibiotics that he took, and thus his doctor got to continue to think that he was a healthier than average person and that Cipro was a perfectly safe drug.

I have always talked about what was going on in my body and mind. Silence is not something that I have ever been afflicted with. I have always felt the need to be understood, to be recognized and for my pain to be acknowledged. I am lucky enough to have friends and family members who listen to me. Despite being a talker, I still felt like I lost my voice for a while. I felt like I couldn’t really explain what was going on. I felt like there was a wall between myself and those that I was trying to talk to. I think that feeling socially isolated is a symptom of being Floxed and that it’s really difficult to explain something like Floxing to people. It is ABSURD that a prescription antibiotic that is used all the time could cause my body and mind to explode like it did. I knew that what I was saying sounded absurd, and that people didn’t understand what was going on, so there was that barrier to my voice being heard. It didn’t stop me from yapping though. 🙂

I hope that all of you who are afflicted with silence start screaming about your reaction soon. It’s not okay that you were hurt by a prescription antibiotic. It’s not okay for these drugs to take away your ability to walk, your ability to think, your ability to speak, etc. I hope that you all gain your voice back, that we are all heard, and that this absurd situation starts to change.

 

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7 thoughts on “The Silence Around Fluoroquinolone Toxicity

  1. pat April 30, 2014 at 1:33 am Reply

    intracellular magnesium is the main cause of fq effects. the 2-carboxyquinolone section on fq chelates magnesium. fq easily penetrates cells and chelates magnesium. you feel better when you have beets because beets inherently contain large amounts of tmg or trimethyglycine. once tmg is metabolized the glcyine profoundly facilitates the uptake of magnesium into the cell. spinach also has large amounts of tmg. id bet u feel a lot better after eating spinach as well. boosting intracellular magnesium is a very hard task, not impossible, but hard. email me if you have any questions. ill be posting a full report on boosting intracellular magnesium… supplements are too weak. if damaged mitochondrial dna were the problem with fq then children of floxed mothers would would also be floxed but this is not the case… theres is hope for all floxies.

  2. Lisa Bloomquist April 30, 2014 at 7:45 pm Reply

    Thank you, Pat! I would love to see your report on boosting intracellular magnesium. I agree that there is hope for all floxies and that magnesium depletion is a huge part of the problem. I’m also under the impression that there are downstream consequences of the magnesium depletion – namely that there is mitochondrial destruction which leads to a cycle of further mitochondrial destruction – are you under the impression that that is part of the problem as well or do you think that it’s all about the mag depletion and that fixing the problem is all rooted in restoration of cellular magnesium levels?

    Thank you,
    Lisa

  3. Pat May 4, 2014 at 10:46 am Reply

    Has anyone noticed horizontal ridges/lines on their nails after being floxed. My big toe nails now have horizontal ridges. I’ve also heard of other floxed talking about the ridges on other nail locations such as their thumbs.

    • B November 12, 2014 at 10:31 am Reply

      I just read this blog and comments.
      @Pat, not sure whether you still follow this blog:
      I have the ridges and lines on all my finger nails.

      In TCM ( Traditional Chinese Medcine ) , nails are related to tendons, and tendons are related to livers. Ridges on nails reflect problem on tendon/cartilage/joints, and may even to liver.
      I have been taking wolfberry because it is assumed to be good to liver and tendon.

    • Kimberly April 20, 2017 at 5:39 pm Reply

      Omg… I’m just starting to get them.. it’s been 2.5 year’s since I was floxed! Healing from a rotator cuff year from 9 mos ago and can feel my liver is struggling.

  4. B November 12, 2014 at 10:41 am Reply

    @Lisa
    The story of the psychologist and the story of your date guy moved me.

    Well, my wife understands what happened on me, sadly because she also has some mild symptoms of “tendon joint pain” and ” muscle twitching “, not severe though. She wonders what those symptoms are and would have just let them go if not for me.

    Under my detailed query, She noticed that all her mild symptoms began to appear after she took 6 pills of Advil, and she recalled that 2 years ago she ever took 28 pills of antibiotics for UTI ( what kind of antibiotics she cannot remember ) .
    I told her never touch Advil or NSAIDs any more.

    We see flox toxity on many people who have joint pain. maybe we are crazy in their eyes. 🙂

  5. Eieen OBrien June 14, 2017 at 9:29 am Reply

    I have been screaming and begging for help for three years!!!! Its getting worse!! I am labeled a drug seeker..a hypochodriac..I now have NO dr…am inexruciating pain..cannot walk..and deteriorating daily….what advice do you have for me..besides suicidebto end the g horrible SUFFERING???

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