People often ask me if they are going to recover from fluoroquinolone toxicity. I struggle to answer them.
The most truthful and honest answer I can give is, “I don’t know.” I truly don’t. I don’t know how anyone else’s body is going to react to this poison. I don’t know if you’re going to get worse or better. I don’t know what your timeline will be. I don’t know if you’ll go through cycles. I don’t know if you’ve hit the worst of what is going to happen and your journey is all uphill from here, or if your pain and suffering have just begun.
Fluoroquinolone toxicity is so strange and individualized. There are some people who are permanently disabled by one pill, while there are others who tolerate multiple prescriptions of fluoroquinolones with no notable effect, but with their hundredth pill a “bomb” goes off in their body. Some reactions are sudden and easily noticeable, while other people have a gradual accumulation of damage and they slowly notice that they have insomnia, anxiety, GI distress, and that they cannot tolerate foods or chemicals like they used to – those people are floxed, but they often think that they’re “just getting old.” There are some people who have delayed reactions, there are some people who have immediate reactions. Reactions range in severity from mild to severe.
Different things help different people. Some people are helped by supplements, IVs, acupuncture, chiropractic, physical therapy, special diets, etc. But other people aren’t helped by those things, and some people are even hurt by them.
Everyone is different. I don’t know whether or not you will recover. I wish I did so I could give a better answer than, “I don’t know.” I can tell you that I have recovered. I recovered fully. I can work, hike, bike, travel, sleep, eat, and function as I did before I took ciprofloxacin. Probably because of my perspective as a person who has fully recovered, I tend to believe that many, maybe most, people can recover. People send me their recovery stories, and there are many more people who I see post things about their recovery on facebook. I see people move on with their lives. It’s hard to tell from facebook posts whether or not people are healed – you can’t see pain – but you can see that people are continuing to live life and that their pain and illness don’t consume every aspect of who they are. I see healing. I know that it can happen.
I also know that not everyone recovers. It needs to be acknowledged that some people are PERMANENTLY injured by Cipro, Levaquin, Avelox, Floxin, and the generic fluoroquinolones. Some of those people are permanently disabled because of muscle wasting and tendon tears, some of them struggle with chronic and permanent pain, some develop autoimmune diseases for which there is no cure, some never gain their energy back, some have insomnia that negatively affects every aspect of their life, some have serious psychiatric issues, some people have intractable GI issues and food intolerances, etc. The people who are severely floxed, who are not going to recover, deserve acknowledgement and respect for their struggles. Severely floxed people are some of the strongest people I know. During a conversation with friend of mine who was SEVERELY floxed (she was bedbound and paralyzed for months, and it hurt for her to blink) I noted that if she had been floxed at the level that I was (a moderate reaction) she would still be running, but if I was floxed at the level that she was, I’d be dead. She is so, so, so, so strong, and she has my undying respect and admiration.
When people ask me if they are going to be okay, if they are going to recover and heal, I think that they’re often looking for reassurance. On some level, they must know that I don’t actually know whether or not they’re going to heal (I’m just a fellow floxie who happens to write on the internet), but they want to hear someone who has been through it say, “You’re going to be okay. You will heal. It will get better.” I often say that to people. I believe it too. I think that it’s true for many, maybe most, people. Our bodies really do have amazing healing abilities. There are people who are floxed at all levels who see changes in their condition, and even healing. (My friend mentioned above has made remarkable progress. She may never recover to the point where she can run again, but she is no longer bed-bound.) Health ebbs and flows. Our bodies are constantly healing, and aging, and going through good times and bad. Most importantly, I think that hope is important, and that it’s healing. Reassuring people, and telling them that they’re going to be okay, gives them hope. Telling them that I have recovered gives them hope that they too will recover. Telling them that recovery is possible helps them to get through the hard times.
Hope is really, really, important.
Acknowledging that these drugs can do permanent damage, and giving respect to the permanently injured people who are living with the damage, is important too.
I try to walk the line between giving hope and acknowledging the pain that these drugs cause. I do my best, but I’m not always successful. I believe that it is the right thing to do to reassure people when they are scared, and to give them hope when possible. I also believe that it is the right thing to do to tell the truth (that I don’t know). Sometimes those things aren’t reconcilable.
Perhaps the best answer to the question of, “Will I be okay?” is, “I don’t know, but I can tell you that I fully recovered, so I know that it’s possible.” That’s the truth. And I hope that my recovery gives all who hear about it hope that they too will recover. Hope really is important and healing. It’s vital, and I hope that I can give you hope while still acknowledging that I don’t know what the future holds for myself or anyone else.