Today is my one-year flox-oversary. I feel conflicted calling it that, because I believe to truly move on from the trauma that Cipro inflicted upon me, I need to move on from labeling myself as a floxie. In sum, I am doing so much better than I could have ever imagined on April 13 of last year.
Last April, I had a moderate UTI. I went to my university health center and was prescribed macrobid. My symptoms persisted, so I messaged the prescribing doc for a second course of macrobid. The school told me I had to go back. On April 12, 2018, I met with a school PA who wouldn’t even look me in the eye when I told her about my UTI symptoms. She asked if I had back pain; I had lifted weights the day before and I did, but I told her it just felt like a muscle ache from my workout, and I had many UTIs before, so I really didn’t think it was a kidney infection. She asked me if I had Cipro before, and I couldn’t remember. I had many UTIs as a kid at summer camp because the counselor forced us to keep our wet bathing suits on all day after swim time. I had taken many antibiotics for the infections, but it was so long ago that I didn’t remember what had worked.
I rushed to the pharmacy to pick up the Cipro prescription because I was eager to get to the gym to work out. I was a fitness instructor in undergrad, and working out daily continued to be my stress outlet of choice as a grad student. I remember I had to wait a long time to pick up the prescription and was annoyed, it was about to be rush hour at the gym, and I was worried if I waited any longer there wouldn’t be any squat racks left. Finally, the pharmacist called my name. She asked me if I had ever had cipro before, I said I didn’t think so, and she gave me a warning: “If you feel any joint pain, stop the medication immediately.” I opened the prescription bottle on my way to the gym, and distinctly remember choking on the pill because it was so bitter. In between sets at the gym, I quickly looked up Cipro and a different medication I take on a drug interaction checker. Early that year, my mother and I had discovered my dad’s doctors were prescribing him lethal combinations of medications, despite providing them full drug lists. To my surprise, I stumbled upon hundreds of stories of long, healthy people like me who had been crippled or murdered by this medication. I rushed to the bathroom and tried to make myself throw up the medication. Unfortunately, it had already been an hour and it had been long dissolved in my system. I went home in a panic, and couldn’t sleep that night. I had strange hallucinations of static and bright lights all night. I threw out the medication the next morning.
I woke up feeling fine the next day and hoped I had dodged a bullet. It was my boyfriend’s birthday party that day and I was still extremely anxious. I feigned calm for the next 24 hours, but I was panicking internally. Two days after my one, 500 mg dose, I woke up feeling like every joint in my body was connected by taught, dried out rubber bands, ready to snap at any moment. My skin crawled, I felt like I was being electrocuted and that bugs were running up and down my legs. My Achilles hurt the worst out of all of these, with my knees and elbows as close seconds. I could barely make it from my bedroom to my bathroom. My worst fears had been confirmed. I laid in bed and did a few hours of research on suggestions from other floxies, and decided to try some Epsom salts.
At this time, I didn’t own a car, so I limped down the road to pick up a package of Epsom salts from the local market, and felt like I could barely carry them back home. This is coming from someone who could squat their own body weight one week pre-flox. It was two weeks before my final exams, and I found I wasn’t able to get to class. For the next week, I listened to my lectures remotely while soaking in Epsom salt baths for hours. I didn’t think I’d walk normally again.
I went back to my school health center to meet with the PA who floxxed me a week post-flox. I literally had to take a cab for the 10 minute walk from my apartment to the school. She wouldn’t meet with me, they made me meet with the director of the health center. He sneered at me – I showed him that the arch of my foot had fallen on one foot, and he said it had always been that way. He told me I was working out too much (despite being practically bed ridden for that week), and was rude. I decided then that no medical professional would help me and I would have to help myself with my own research.
After exams, I developed a better and more consistent supplement routine, to which I still adhere today. I take:
One cap full of ReMag (I tried many other forms of magnesium, and none made a difference except for ReMag)
200 mg CoQ10
Occasional vitamin D
I eliminated all meats that weren’t antibiotic free, and all fish. It seemed from my research that fish contains a lot of antibiotics, but I don’t know if its true. I ate magnesium rich foods like sweet potatoes and almonds. Within a week, I felt 25% better, but I also only took one pill and am very young.
My parents didn’t believe what had happened to me. My mom would call and text that she had talked to her doctor-friends, who believed I was suffering from a kidney infection because I stopped the Cipro early, or that I needed to check myself into a psych ward ASAP. At her insistence, I went back to a doctor two months post-flox. He ran a complete panel of tests, but insisted Cipro couldn’t have done this. I live very far from tick country, but both he and my mom’s “Panel of experts” insisted I must have Lyme disease. Every test came back normal, as happens to most floxies. Walking out of his practice, I noticed there were many posters that were either sponsored by Bayer or were advertisements for Cipro as the best remedy for all infections.
Every summer, I go with my friends to a big music festival. I was 50% healed by this point, but I was worried that I wouldn’t be able to stand/dance all night like I was accustomed to. I ended up asking the production company for ADA accommodations, and I sat on a raised platform for most of the night. It was the first moment in this nightmare that I had hope that I would be able to do the things I enjoyed, and that the pain might be temporary. As I sat, listening to music and looking up at the night sky, I was fighting back tears of joy. Perhaps all of this suffering had been a dream, or would end soon.
I started going on a slow, short walk every day, starting with a mile and gradually increasing. I rubbed magnesium oil all over my legs before and after I went out, as I found this worked much better for me than soaking in the Epsom salts.
In June, I went to a rheumatologist. It was the first time a doctor told me they had patients who reacted the same – but all he could say was his prior patients got better, and the average recovery time was 3 months.
By July, I was feeling 75% better. I was taking a two mile walk every day and felt fine if I only wore athletic shoes. But a new symptom emerged. I was at an outdoor music event and had eaten a cannabis edible, and it was not my first time having done so post cipro. My heart rate suddenly increased to 180 when I was sitting. I had chest pain and dizziness. I ended up being rushed to a local ER in the ambulance. The hospital insisted on giving me an IV of Ativan – even after I begged them not to. The more I pleaded for them not to give me any medicines because of the CIpro, the more they insisted I was having a panic attack. They gave me so much Ativan that I blacked out. This has never happened again.
I was feeling about the same in August, until I started experiencing crackling and pain in my jaw. At a friend’s suggestion, I started seeing a chiropractor, who tried to compare my Cipro nightmare with her mild allergy to mangoes, the worst symptom of which was a rash. My second visit, she led me into a dark room and stuck me with acupuncture needles without my consent. I never went back.
In September, I suddenly couldn’t open my mouth all the way. I could open it about half way but I couldn’t eat, brush my teeth, or talk very well. I quickly scheduled an appointment with a local oral surgeon. I was worried it was dislocated. The office gave me a stack of 20 pages of paperwork to flll out, including any medical allergies on multiple pages. I wrote on every one, as I do now: all fluoroquinolones (listing the names because apparently medical school doesn’t teach you anything about drug families) all steroids, and all NSAIDs. The doctor examines me; tells me there’s nothing wrong with me, and I should pop an ibuprofen. I heard the assistant laughing when I walked out. I was in such a blind rage I couldn’t see. It’s difficult to describe but it was like my surroundings were dreamlike, and too bright at the same time. I lost my parking garage ticket and paid $20 for parking for the 5 minute visit. Driving down the street, I felt absolutely overwhelmed with suicidal thoughts. This wasn’t something I had experienced before. It was bizarre, I was upset leaving the office, but these feelings hit me like a train. I decided to stop driving because I felt out of control. I sat on the side of the road for an hour.
My boyfriend and my doctor both insisted I go on antidepressants. I didn’t want to because I was scared of any adverse effects. I didn’t feel depressed all the time – it was just weird, out of the blue depressive symptoms that hit suddenly and were all encompassing. I upped my CBD, and I haven’t experienced this since.
And in no way advocating for others to do this – but I think the moment I broke through these crippling depressive spells was when I tried psyclobin mushrooms shortly after the incident in September. I experienced an ego death. I truly did not know who I was, nor what my surroundings were. I encountered everything as if I was experiencing it for the first time. I gained incredible gratitude for my friends, family, my own body, and the wonders of nature as I rediscovered myself over the next few hours.
By November, I was feeling 85% better. I started going to the gym and using the elliptical once a week. I still went on walks, and incorporated walking into my every day lifestyle.
I experimented going off my supplements for a few days while I travelled in January. I felt some soreness, but it wasn’t the catastrophe I had anticipated.
In January, I started back at the gym regularly. I have been doing 3-4 days a week, split between light upper body weights and elliptical. I’ve gradually upped my elliptical resistance over this time. I have tried to do lower body weight lifting, but I always feel off and stop.
Looking back, it is important to try not to obsess. I spent hours my first few months reading every post I could. The truth is, after I learned enough to develop a supplement regimen, the extra reading was just making me depressed and anxious.
I’ve tried to warn friends and family who mention they’re sick and were prescribed an antibiotic about the dangers of Cipro. There’s mixed perception – some people are grateful, and likely act upon it, whereas I’ve had others tell me “It happened because you’re weak, I’ll be fine.”
I’ve lost a lot of friends over the last few months, people who didn’t believe me, thought I was crazy, or even straight up laughed in my face at my pain. I think that this experience has made me stronger and helped me grow. My appreciation has grown for the people who did love and support me unconditionally through this journey, and for my own current abilities after experiencing pain and limitation. And I do miss eating sushi especially, but I’m planning on continuing this restricted diet for at least another year out of pure fear.
*****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.