Fluoroquinolone Recovery Story By Katrina JohnsonIt was Jan 2020. I was 33 years old. I had a persistent cold since before Christmas and developed a bad sinus infection. After 3 weeks my family doctor recommended antibiotics. I have a penicillin allergy and was breast feeding at the time (my baby was 5 months old). My doctor said I was limited to what I could take. She recommended a 10-day treatment of Levofloxacin. At the time I was more concerned about taking medication due to me breast feeding. My doctor said if I felt better after day 5, I could stop. Upon starting the antibiotics, I didn’t feel the greatest, but I chalked it up to typically side effects. My doctor only cautioned me about C-Diff as a side effect and told me to take the medication with a probiotic. Side effects at this time ranged from cold/clammy sweats, shaking, headaches, etc. Day 2/3 my fingers went blue (which has never happened). Raynaud’s phenomenon. This scared me. I called 811 and the pharmacist. Both again told me that I was limited to what I could take and that I should finish the prescription to avoid antibiotic resistance. On day 5, 2 hours after taking the antibiotic I had a severe reaction that effected primarily my central nervous system as well as my cardiovascular system. I was at home, we ended up calling 911 and the ambulance took me to the hospital. I was tachycardic. My heart was racing and it wouldn’t slow down. My legs were shaking nonstop, dry mouth, vision problems, and muscle weakness in the lower half of my body. The doctor at the ER told me it was an allergic reaction to the medication. Day 2 post “allergic reaction” I was left with major muscle weakness in both legs. From my hips down to my feet. Walking up a normal flight of stair I had to take a break. I don’t like to think back to when this first all happened. The change of events happened so quickly. I went from being a high functioning individual to disabled. From there everything fell apart. The side effects were constant and always changing. I had lost my old self and was struggling to get through day. Some of the side effects I had;
Muscle weakness in arms and legs
Muscle pain in my thighs, calves and feet
Chronic eye pain; my prescription changed 4 times within a 2-month time frame of taking the antibiotics. I went from needing glasses for the computer to wearing prisms.
Painful joints; shoulders, wrists, knees, ankles
Bilateral face and a jaw pain; primarily my masseter muscles and pytergoid muscles
Bilateral face numbness
CNS sides effects
I didn’t sweat for months
Crawling, pulling sensation in my upper body and under arms
Peripheral Neuropathy bilateral in my upper body (under arms and biceps)
Tendon pain in my IT bands, calves, ankles and feet I saw my family GP 3 weeks post flox and she looked like a ghost when I told her what was happening. She said it was very rare, 1 in 10,000. That it should resolve over time because I was young and healthy. And to wait it out. When I asked her what time frame that I was looking at she said it could be weeks, months or years. But again, reiterated my age and previous good health, and that she was optimistic I would heal quickly. It was pure hell. I don’t like to think of the first few months post flox. The side effects were unimaginable. For lack of better words, I couldn’t do “life” anymore; I couldn’t be a parent, I couldn’t hold my baby, I was self-employed and unable to run my business, I couldn’t even shower early on without help.
Being disabled wasn’t something I could handle, waiting it out was something I couldn’t do. I struggled over the next few months to manage everyday life. I felt fortunate I was able to get an appointment with an internist 6 months post flox who insisted I be admitted to fast track a number of tests to rule out other neurological diseases as I have a family history of MS. At the time, I was in the head frame also that there had to be something else going on. I still didn’t believe 5 pills could do this to me. So, I was admitted. I had an MRI and a spinal tap. Unfortunately, I developed spinal headache, which is caused by a leakage of spinal fluid through a puncture hole in the membrane that surrounds the spinal cord. The pain was incapacitating when I would try to sit up. The doctors pumped me full of NSAIDS and caffeine. Apparently, this is the treatment for spinal headaches. And boom … everything flared again and at the time I didn’t know why.
My muscle and tendon pain was excruciating. My feet hurt so bad I was unable to walk much again. I felt like I had electricity surging through my veins. I was back to where I was in January. I was more disabled than I was before. I was offered a spinal patch to try to help the spinal headache. The doctors started warning me of the risks and I decided to try and wait it out and decline the procedure. I felt like since I was already 1 in 10,000 I didn’t want to win the reverse lottery again. It took about 3-4 weeks for the spinal headache to fully go away. I spent majority of my time in bed. My parents flew in to help me with the kids as I physically could do anything…again. I know now things were made so much worse by the stay in the hospital. It was a total set back.
The good thing about my hospital stay is that I was able to get a number of referrals for different specialists. From here I spent a good portion of the next year seeing doctors after doctors and trying to find anything that could help. In total I saw 2 internal medicine doctors, a neuro-physio therapist, a chronic pain specialist, a rheumatologist, a physiatrist, an ophthalmologist, and 2 neurologists. I also had weekly chiropractor treatments, massage treatments and physio therapy appointments. Additionally, I saw 3 naturopathic doctors on and off. I had so many tests. SO much blood work, CAT scans, MRIs, EMG testing, echocardiograms, spinal tap, eye tests, etc. And everything always came back normal. So, what helped?? Honestly, in the first year, I would tell you nothing. I now know, first and foremost I needed time. Time to rest and time to heal. This is what I tell people When they asked me what helped the most, which is ironic as my GP who prescribed me this poison told me the same thing in the beginning. I couldn’t tolerate supplements, and trust me, I TRIED EVERYTHING! I even struggled with alternative modalities of healing. Acupuncture caused me to flare. My physio tried me on her BEMER mat which cause me to flare BIG time. What helped even more? MOVING, but only when I was ready. The physiatrist that I saw explained to me that the medication causes a buildup of oxidative stress in the body and the only way to get it out was to SWEAT and to get the body moving. Heart pumping. She knew that this was difficult considering I was limited in my mobility and had so much pain in my muscles and tendons, not to mention weakness. She suggested low impact; swimming, biking, etc. So I bought a recumbent bike and started to bike. It HURT, but I kept trying. I also started walking. At first 1km per day, and then gradually building. By June 2021 I was walking 5km a day. And then out of the blue one day I found myself RUNNING! This is the old me!! I couldn’t run the whole thing. I would do a walk/run. It felt so uplifting. I was grateful to do something I thought I may not do again. Lastly going back to the basics with clean eating; nothing processed, antibiotic free meat, gluten free and mostly dairy free. Eat the rainbow. I fought this for some time, but anytime I would deviate from clean eating I would pay the price. In 4 weeks, it will be my 2-year anniversary from being floxed. I am about 85% healed. I still have bilateral face pain and muscle contractions in my masseter muscles and pytergoid muscles. But I am able to parent my children. I can maintain my household. I can run our business. And get this …I also now RUN 25km per week, ski, play volleyball, hike. I have my life back. Moving is what saved me. I had to rebuild that strength and to get rid of the oxidative stress. Note that everyone is different but for me, this saved my life.
To whomever is reading this, if you have been floxed, be kind to yourself. You will need time. And there will be some very dark days. But healing is 100% possible. I am proof.
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, effect 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.