The entire floxie community knows that each person experiences Fluoroquinolone Toxicity differently from the next. Some people are sick for a few days while taking the antibiotic. Others are sick for months, years, or they have permanent damage for the rest of their lives.
Don’t know what I’m talking about? Read my 3-part story about how I became very sick and disabled from a non-allergy reaction to an antibiotic.
My Healing Story:
When I was originally hurt by this antibiotic in 2016, I lost the ability to walk, I couldn’t feel my entire body, including my face, tongue, etc, I was having extreme nightmares, panic attacks, and anxiety. I was afraid to be alone, I thought I was dying (so did my doctors and my parents), and it didn’t help that doctors didn’t know what was wrong with me for 2 weeks. For those 2 weeks, I was dismissed by doctors, had to crawl to use the bathroom, and I couldn’t watch anything on TV that would even slightly increase my heart rate because I would enter a full-blown panic attack…. although they were common then because of my severe neurotoxicity (my worst reaction), I haven’t had a panic attack before or since. Unlike many other floxies, I was diagnosed with Fluoroquinolone Toxicity by my internist in Los Angeles.
Most of my symptoms lasted 4 months. I was bed-bound, I read Buddhism books on dying, I saw over ten doctors, was in the hospital about 7 or 8 times. Many times I felt like I was floating, I couldn’t speak full sentences, and I had severe tendon damage. Thankfully, I was educated a bit on how to read scientific studies and I understood most of the terminology from my time as a pre-med student in college (and previously, a nerdy high school student in pre-med summer camp, and previously, an over-excited 5-year-old whose dream was to become a surgeon). These skills gave me the opportunity to research the crap out of Fluoroquinolone Toxicity and all of its little intricacies from my bed for the mere 8 hours I was awake a day (I slept basically all the time for months – shout out to mitochondrial damage). I switched to a ketogenic diet, took almost 30 supplements twice a day, ate a lot of vegetables and organ meats to bring my mitochondria back, entered an infrared sauna once a week (as much as I could afford) to relieve my tendon pains, and worked on managing my fun, new anxiety as my legs and arms were still numb.
Eventually, with a lot of hard work and dedication, focusing solely on my health for months, I started to get better. For about a year, numbness and tendon damage continued to exist, so I drank bone broth, included magnesium-rich foods in my diet, took brain supplements, made sure I ate well and had a lot of rest. I talked shop with multiple doctors, who told me that nerve damage can take 6 months to heal, that I may never fully heal from this.
Then, my random numbness started to go away, my tendons were less painful. It took a long time and a lot of patience, but it was coming back. As weird as it sounds, I was lucky.
I was lucky I didn’t die on one of those hospital beds.
I was lucky I recovered as much as I did.
Skiing was one of my favorite things in the world and I was terrified to try it after getting floxed, but with encouragement from my friends, I did it. I opened my ski boots as wide as I could, had someone help me into them for the first time, and although that first run wiped me out for the rest of the day, I built up the strength and courage to start hiking again. Eventually, I could ski all day again.
Because I could ski and hike, I told people that I was 100% recovered, but I’m not.
It’s easy to compare yourself to others when others’ pain is either so much worse or so much better than yours. It’s easy to become bitter when you see that someone recovered when you did not. It’s easy for me to say I recovered 100% when I know a few people who barely recovered at all.
I still have tendon pain here or there and I keep magnesium oil nearby for when that happens. Tendons are very difficult to heal, especially when a drug makes them brittle. I know, even though I can’t see them and there are no tests unless you rip me open, that my tendons are scarred, that maybe some of them are not fully healed. Before I was floxed, I used to rock climb all the time. Since? I’ve only climbed once and I was terrified to rupture a tendon the entire time. Climbing is allllll tendon. Skiing barely involves your tendons at all. Getting floxed has taught me to think positively, though, so I picked up a harness, climbing shoes, and some carabiners, hoping that someday I can feel comfortable enough to use them regularly again. It really sucks to hear my friends who have just started climbing in the past few years ask me, surprised, “Wait, do you climb?” I’ve been climbing since I was a little kid.
My hands go numb faster than the normal person, usually if they’re elevated even a little bit for more than a couple minutes, but for the most part, I can feel my hands. I was so afraid I would never feel my hands again. My ex-boyfriend from high school has permanent damage in his hands from frostbite. Although he can’t usually feel them, they’re sometimes painful and they swell up easily. I didn’t want that for myself. I didn’t want any of it.
Yet, I was given the opportunity to recover. I’ve taken that opportunity to become an activist for the community and to make a documentary about it for the chance to educate people who haven’t yet been floxed, to prevent others from incurring the same fate. Because I have the ability to use the keyboard and type these words, I’m going to do it. Because I have the ability to carry a camera, to build stories, to share my experiences and give a voice to others, I’m going to do it.
The Story of Others:
In my time since getting floxed, I’ve met a lot of other floxies who have had a wide range of symptoms compared to my experience.
I’ve met some floxies who had some pain in their joints or their wrists, maybe they had a bit of the anxiety I had, and they come to me for help. Fluoroquinolone Toxicity tends to get worse over time, at first, so many of them are afraid of running into the same fate I had. I tell them that it’s okay, that most people recover at least somewhat, and I give them the list of basic supplements to take (magnesium, coq10, etc), supplying them with informative links, and sending them on their way.
Sometimes, it’s frustrating to hear another who had maybe a tenth of the reaction I had freak out over it as if they were dying, but I constantly remind myself that it doesn’t matter. Whether you had one symptom or fifteen, you’re still experiencing a horrifying, damaging reaction to an antibiotic that you shouldn’t have to experience. Regardless of the severity of your specific reaction or your ability to heal, it’s terrifying. Each floxie’s experience is valid and it doesn’t make them any less of a floxie. Just because one person had one tendon rupture and another died of a fluoroquinolone-induced heart attack doesn’t mean that one was floxed and the other wasn’t.
Throughout this documentary filming experience, I met two people with some of the worst reactions I have ever seen or heard of and despite their 20+ surgeries to repair ruptured tendons or having to be bound to a wheelchair for a year, both of these people stand up for their community and continue to exude positive energy. They don’t let getting floxed ruin time with their children. They don’t let getting floxed stop them from rolling around a political rally or starting a new career even though it seems impossible.
By ‘most recover somewhat,’ I mean that everyone tends to heal at least a bit. I know one floxie who couldn’t get out of bed for 2 years and now she’s walking around for hours, speaking out about Fluoroquinolone Toxicity. I know another floxie who smokes cigarettes, which totally freaks me out, I must admit, but props to her.
Doing the ketogenic diet was a catalyst for me to find out that I had celiac disease, which I am so very grateful for. I had severe headaches and migraines before getting floxed, but now I don’t have any, so watching another floxie eat a piece of bread also freaks me out.
It’s so easy to sprinkle others’ experiences with your own perspective. Trauma can wash our memories over with a judgmental hue, especially for those who haven’t recovered ‘completely.’
It must be difficult to meet others who have healed when you haven’t. It must be impossible to imagine a normal life if you feel that you can’t ever go back to normal. It’s also difficult to meet these other people who have had much worse reactions than you. Do you call yourself ‘lucky?’ Do you let them inspire you? Do you help them get their story out so we can help others?
I feel as though we are a big floxie community and that our collective goal is to prevent this same fate to happen to other people, no matter how severe the reaction. We lift each other up and help each other out and give each other a reason to live. We were all hurt. We were all poisoned. Some of us will never be the same again and others are back kickboxing professionally even though it took almost ten years to get there.
I am so grateful for my floxie community. I am so grateful that I know a variety of people who suffered a similar fate and that so many are working hard to keep others from joining us. Getting floxed is so horrifying and so traumatic that it’s easy to let negative thoughts pervade our lives. Don’t let them.