The Silence Around Fluoroquinolone Toxicity

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.