I was floxed twice.
The first time was in July of 2016 for a suspected UTI. There was no UTI. The bacterial culture came back negative, but no one ever called me to tell me to stop the antibiotics. I finished the entire prescribed dose of Cipro. Something was happening to me but I never attributed it to the Cipro until almost 2 years later when it happened again.
Like many others, I bounced around to doctor’s appointments in search for answers. I had written down a list of my symptoms at that time to bring to my rheumatologist’s appointment:
1st time floxed (August 2016):
– random episodes of dizziness
– eye floaters
– tinitus (I already had it in one ear due to some unilateral hearing loss, but developed it in the other ear)
– anxiety and feeling of hopelessness
– feeling very down
– random bouts of crying
– tendon pain all over
– joint pain
– feeling that my bones were trying to break out of my skin
– intense fatigue
– weakness, like my legs were heavy and couldn’t sustain my body
– intense arm and leg pain
– calf cramping
– terrible insomnia
– heart racing, beating hard and fast
– hair loss
– dry eye
– liver pain (started months later)
– what I thought was heart pain…likely costochondritis (months later)
To compare, 2nd time floxed (May 2018)
– all above symptoms
– vibrating sensations, primarily in legs, arms and face
– face numb (not positive if it was the quinolones or not)
– nerve pain/tingling/numbness all over body
– muscle twitching
New symptoms kept showing up each week. The symptoms were cyclical. I could go weeks with the horrible pain and fatigue, and then it would taper for weeks at a time to almost nothing. Each time I’d feel better, I thought it was all gone for good, only for it to return again. I never took magnesium because I didn’t know to. I did start to eat cleaner (did the Whole30 diet for a month, ate and still eat gluten and dairy free and overall was conscious of what I put into my body). The only thing I took was Vitamin C, D, and a probiotic. I never took NSAIDs, thankfully, as I now know that could have made my situation worse.
Four months later at the end of October 2016, my husband and I went to the beach in Florida. I remember that I was at a peak of pain, sitting on the airplane, feeling anxious and wanting to cry, every part of my body hurt. At one point a few days into our vacation, after being in the ocean for hours each day, I felt like I was going through a pretty intense detox. I was at the worst of all of the pain and sensations of the entire past few months. I cried to the pharmacist, begging for something that could provide relief. I left empty handed which was not a bad thing. The next day, all pain was gone. Just like that. The anxiety was gone. My body felt strong. And it never returned to that magnitude again. When people say it has to get worse before it gets better, it’s really true. Embrace the bad because it will get you to the good!
What remained (now looking back):
– random joint and tendon pain that would crop up here and there
– dry eye cleared up but took a few extra months
– my left hand still tingles at random
– I continued to play soccer, and my left calf would cramp up so bad within minutes of playing, so badly that eventually I had to stop playing. This only started after Quinolones.
The second time I was floxed was in May of 2018 for a suspected sinus infection that I never did have. I took that first Avelox/Moxifloxacin pill and felt something was wrong as I woke up that night unable to straighten out my knee. I took the second pill the following day. I began to notice my legs were incredibly weak…it was difficult to walk. I went to the ER, and they told me to stop this antibiotic immediately. It was helpful that nearly every doctor and pharmacist that I talked to believed me, or had heard of this as a possible reaction to Quinolones. I’m thankful for that. One pharmacist stated that this antibiotic is becoming a real problem the longer it’s on the market. People think they are fine taking it once, twice, ten times, until suddenly the ‘bomb’ goes off in your body. I’m glad recognition is starting, so that this antibiotic class can be reserved for times where absolutely necessary.
Everyone assumed that since I was off the antibiotic, my symptoms would improve. But that was when everything got so much worse. I had less intense cycles of pain this time around. This time my symptoms were more steady (from worse to less worse, but never gone and mainly bad). That made me wonder if this time my symptoms would become permanent. The only thing that I could say that was better this time compared to my first floxed experience was that I didn’t have the intense flu-like fatigue, maybe because I stopped after two pills this second time around, or maybe because it was Avelox instead of Cipro. I was tired, but not the same intensity. One day it clicked, that this is what happened to me 2 years prior. It was frightening to know that I did this to myself for the second time, and for no good reason. The effects are cummulative and I wondered if maybe I wouldn’t pull through this time.
The insomnia kicked in about 2 weeks in. I hated it. Heart pounding and racing in the middle of the night, unable to sleep…but I knew this time what was happening to me so I would tell myself that I had to ride this out. The anxiety and random crying was so uncharacteristic of me, that I could remember crying and telling my husband that this was not me, that this was the antibiotic, and that it would pass. It did. I never had mental health issues before taking Quinolones, and I haven’t since. If you are suffering from the anxiety, I think it’s one of the worst of all the symptoms…it really will pass. You WILL feel normal again, especially if you didn’t suffer from it before. Just keep reminding yourself, it’s not you, it’s the anbitiobics!
About two months in, I started losing so much hair (for you women who have had babies: just like post-partum hair loss).
Three months in, I started with the nerve pain. This time, like hot lava being poured on my head. My trigeminal nerve on both sides of my face would burn. My spine would burn. My abdomen would burn. My face and scalp would go entirely numb and tight, like I was wearing a mask. This was a frightening new symptom. Crawling and tingling all over my body from head to toe. I kept thinking I had insects crawling on me. My skin felt like it was vibrating all over. I knew that because I was floxed for the second time, I would need more time to heal than the first time. I would give myself daily pep talks, willing myself to be better and stronger. God has taught me many things through this, and patience was one of them! I sure did lean on Him during these months.
What I took this second time around: Vitamin C, B Complex, Magnesium Glycinate, Iodine (tiny amounts and for a short amount of time) to help flush out the excess fluoride, Vitamin E (short amount of time), eating well, going to the beach again (replenishing those lost trace minerals). I also did epsom salt feet/leg soaks every single night for about 30 minutes for months. I had read that it is a great way to replenish magnesium, and I would notice if I missed a day or two.
I never sat around and felt sorry for myself…for long. I think I cried every single day for 5 months, but I made myself stop each time. And I never cry about it anymore. I knew this wasn’t the real me, but what the Quinolones were doing to me as they messed with every part of my body and mind. If you have been floxed, you know that Quinolones affect you at the cellular level. Your mitochondria is destroyed. Everything is poisoned. But God made our bodies to heal…give it time. I knew I was getting better when for two days, just like the first time, everything got so much worse. I couldn’t get up off the floor to put one foot in front of the other. It was pain, fatigue, crying, but strangely I felt like “this is a good thing! I’m almost at the finish line!”. And it was true. Following that was the biggest leap of improvement in the entire process. Just after that we went to the beach and I’ve been so much better since.
I know what it’s like to feel like your body is dying from the inside out. I didn’t want to appear weak, but I did. I have four young kids, a loving church family, and an amazing family…they saw me at my lowest which is incredibly humbling. My husband gave me so many foot massages, I could cry thinking of how wonderful he was to me during that time. And oh, my family and friends! I had meals, help at home, and more. A small glass of wine before bed from time to time really helped my overactive system (I have read so many people saying that it helped, and it’s weirdly true). You have to keep smiling, keep moving, keep hoping, keep praying. The months and years seem long and the future uncertain, but most people heal eventually. Maybe not exactly as you were before, but pretty close! That sounded upsetting when I’d read that people after one or two years were “85%” or “90%” healed. I wanted to be 100% healed! And I understand the frustration of not being able to do everything you did before. I was very active and there is a lot I still can’t do, but there is a lot I can do. Honestly, I think you will be so relieved when the initial horrible symptoms are gone that you won’t mind being 85% healed as much as you thought you would. You’ll be grateful.
I remember the first time I took a long walk, and realized I didn’t feel like dying after! It felt like such a gift. It almost seems silly now, now that I’ve improved so much. I sometimes ask myself, did I just even go through that? TWICE? The reality is that my body is still healing, and I don’t know if I’m in a better cycle, or if I’m good go to with continuing on the healing…but just having these days gives hope that I’m on the healing track. I can handle life like this. I’m nearly at the 6 month mark! It’s only going to get better from here.
And as some extra advice, once I realized just how frightening the stories on google were for this, stories of permanent damage and the medical articles on Quinolone Toxicity and what it does to the body, I stayed off for good. When I felt low, I would pray…our God hears and cares about our suffering. And then I would read recovery story after recovery story on Floxie Hope to remind myself that I too could heal eventually. I’m so glad this site exists! The recovery stories really gave me hope, but also helped explain what was happening to me. The first time I went through this, I had no idea what was going on with me and that was disheartening in its own way. This time, I did, which made it that much easier. Be patient. Keep busy even in pain and fatigue. Walk as much as you are able, and push yourself a little more each day. Allow people to be around you and even to help you.
Thank you for taking the time to read this. If you are suffering with Fluoroquinolone/Quinolone toxicity, it will get better!
* The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.