*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
On July 4th, 2015, I woke up knowing that something was terribly wrong. My right arm was numb, yet painful. My wrist and elbow hurt terribly, my arm was tingling, and I could barely move my arm. Luckily I had read the warnings on the Levofloxacin that I had taken, and had seen the warnings of tendon damage. I immediately called the doctor’s office and my doctor told me to discontinue the drug and to not lift anything heavy for a while. Because of the pain in my wrist, I could not even open my fridge door, or lift a half-filled teapot. I was only on Day 3 of Levofloxacin that I was taking for suspected appendicitis. On June 30th, I had suffered severe abdominal pain. The ultrasound at the ER showed that it was most likely a ruptured ovarian cyst, but the ER doctor made me promise that I would follow up with my regular doctor in the morning. When I did that, my regular doctor suspected appendicitis based on her examination, and told me my options were to go in for a CAT-scan or to try antibiotics, since some studies have shown that 80% of appendicitis cases respond favorably to antibiotics. Fearful of leaving a possible appendix issue untreated, I agreed to the antibiotics. Had I waited a few more hours, I would have seen the pain subside and known it was just a cyst. Unfortunately, I started the Levofloxacin, and made my entry into the “floxie” world.
My early symptoms were extreme anxiety and insomnia (awake for three days straight), heart and chest pain, headaches, muscle pain (especially in my trapezius muscles), and intense tendon pain. My pain at first centered in my right wrist, and I wore a wrist brace, thinking that would help. Soon, my pain spread to my ankles, knees, shoulders, hips, elbows, hands, neck, and it didn’t seem to make sense to wear the wrist brace anymore. The pain seemed to wander throughout my body. When I started experiencing intense pain in my ankles, I could not walk up and down the stairs or down the hill in my yard. I learned to walk sideways up and down stairs. In bed at night, I would not want to bend or straighten my limbs for fear they would be stuck in that position. My joints would make large popping noises when I moved them. It was very difficult to find a sleeping position that did not hurt. When I woke in the morning, I felt like a 90-year-old woman getting out of bed (I was 41). My pain was most intense in the morning. I suffered great fatigue, and by evening, I was exhausted. Standing in one place was very difficult. I needed to constantly adjust my weight back and forth to ease the pain. Kneeling was also very difficult. One day early on, while standing in church, I noticed a grandmother holding a baby next to me. I knew that there was no way I had the strength in my tendons to hold a baby, and I feared that I would not be able to hold my future grandbabies.
I also suffered periodic bouts of sadness and feelings of loneliness, especially after I progressed past the initial extreme pain and disability and “appeared” more normal to my family. While I appeared more normal and was able to function a little more normally, I still endured great pain. Since this was not as visible to my family, I think this caused me to feel that I was all alone in my pain and that no one understood what I was going through.
After my symptoms started, it only took a few Google searches to discover the terrifying world of Fluoroquinolone Toxicity. I remember watching those YouTube videos early on, of people talking about their experiences with Fluoroquinolone Toxicity, and feeling extremely anxious. What they talked about terrified me. I read of people bound to wheelchairs, in constant pain, and some with suicidal thoughts. I became determined to do what I could to help myself. I ended up purchasing “The Fluoroquinolone Toxicity Solution” eBook by Kerri Knox, and quickly read through it. At the same time, I started a search for a doctor who could help me. Many online searches seemed promising, but proved to be dead ends. I wrote letters to nine doctors, begging for help, but again found no one who knew how to help me. Some told me they were familiar with FQ Toxicity, but no one really knew what to do about it. I was so frustrated that the medical and pharmaceutical community had gotten me into this mess but could not help me get out of it. I was truly on my own.
I went about following the “Fluoroquinolone Toxicity Solution” eBook as best I could – I iced my ankles, wrists, and upper back many times per day; I took daily epsom salt baths; I rubbed magnesium gel all over my body (several times a day in the beginning); I went to bed early to give my body time to heal; I drank homemade bone broth daily (with an extra scoop of Collagen Peptides for extra collagen); I drank sour cherry juice every night to help with my sleep; and I took all of the core supplements and many of the extras suggested in the eBook. I quickly found myself spending over $300 a month on supplements. Because I would have good days and bad days, it was hard for me to know which supplements were helping. I would get better for a period and then I would have a relapse.
Along the way, I did notice some improvements. I could lift a partially filled teapot. I could lift a laundry basket. I could go up and down the stairs (still walking sideways) more quickly. Then I could go up and down the stairs walking normally, but very slowly. One day (at about 3 months), I was actually able to get down on the floor for the first time since being floxed. This was a huge success for me! Of course, it was very difficult to get back up again, but the fact that I made it down in the first place was a victory! My joints started popping less often. One day I noticed I could almost run up and down the stairs! I would try to go for walks outside every day. One day after a few months, I noticed that I was able to walk fairly quickly again. My chest pains came less often. Slowly, I was able to kneel for longer amounts of time in church. Some days I could stand without shifting my weight back and forth. One day, I had the notion to try an old stretch video that I had used in the past. I tried it and to my surprise, I could do most of it! I kept a pain journal to record these things and give me hope for my journey. Keeping a pain journal was very helpful because I could look back and notice the improvements I had made.
This past week marked my 1-year-aniversary of being “floxed.” I spent the week at a lake resort in northern Minnesota with my family. Here are some of the things that I found myself doing with very little pain: biking 10 miles, hiking at a State Park on a very rugged steep path, climbing a 10-story fire tower with no difficulty or fatigue, kayaking several miles, getting in and out of a fishing boat with relative ease. I learned that my wrists and elbows are still not ready for badminton or volleyball, but I was quite pleased as I reflected on my one-year progress. I realized that I do not feel extremely physically limited anymore. While I do still have some hip, wrist, and elbow pain; some general achiness especially in the morning; and some difficulty standing in one place, kneeling, and getting up after extended sitting, overall, I feel fairly normal. Most days I feel like I am about 90% recovered, and I do feel hope for a near complete recovery. However, I know that I am still dependent on my many supplements and I do not fare well without them. On several occasions, when I would run out of some supplements and not replace them right away, I would feel the difference. I strongly believe that my current successes are due in large part to my current supplement regime.
At about 10 months post-flox, I did finally find a doctor who believed she could help me. I was very fortunate to find her. I had written a letter to this doctor, and despite the fact that she was not taking new patients, she worked me in! She encouraged me to do the “23andme” genetic testing, and used those results to customize my supplements to what my body needed. After following her recommendations, I experienced a very noticeable improvement. Below is what I am currently taking that has brought me the best improvement. However, I believe that each person’s body has different needs, so it’s unlikely this combination will work for everyone.
- a good multivitamin (I take Metagenics or SeekingHealth)
- fish oil
- liposomal vitamin C (I use SeekingHealth)
- a good probiotic
- lots of magnesium (I prefer glycinate)
- transdermal magnesium (Ancient Minerals)
- Vitamin D
- Phosphatidyl Choline – 1600 mg (Optimal PC SeekingHealth)
- Creatine – 1 gram (my doctor believes the PC and Creatine free up my own naturally-made SAMe to do its work)
- B12 – 1000 mcg – I use SeekingHealth Active B12
- Besides supplements, I try to incorporate the following:
- stretch video – AM/PM Stretch by Gaiam (perfect amount of stretch and gentleness)
- daily walk outside
- going to bed early
- daily tendon massages by my husband
- periodic epsom salt baths
How am I different one-year-post-flox than I was pre-flox? In many ways, I am not as fun and much more high maintenance. My “routine” is very important, and I am limited as to what I can do. Every day, I have to make sure I take all my supplements, do my stretches, and go for a walk. While I used to enjoy coffee, I now take great joy in my morning green tea. I drink it from about 10:00 a.m. until noon. This is the part of the day when I feel my best. I used to enjoy a glass of wine every night while I made dinner. Now I drink sour cherry juice instead. I will occasionally have a glass of wine, but it really does not give me the pleasure it used to. I actually prefer the sour cherry juice. I also eat a very clean diet, and avoid gluten and sugar.
I have become much more aware of my dependence on God, and I have grown in trust of God. I know that God can heal me in an instant if He so desires, and I have often prayed for such healing. The fact that my illness remains tells me that perhaps this illness is part of my path to holiness, which makes it much easier to accept and endure. Knowing, believing, and trusting that God can heal me in an instant makes the day-to-day struggles much more bearable; it’s my reality and God allows it. Perhaps a slow, gradual recovery is beneficial to me in some way I don’t yet understand.
Becoming “disabled” overnight is a real eye-opener – you realize that things can change in your life so quickly. My experience with being “floxed” has definitely made me a more thoughtful person, and more aware of others’ sufferings. So many of us suffer, and we are often not aware of the sufferings around us. Being “floxed” and having to silently suffer day after day has definitely made me more aware of those around me who are obviously suffering, as well as those who may be silently suffering. For this awareness I am grateful. I also appreciate my physical abilities much more than I used to. Climbing a 10-story fire tower makes me feel alive and grateful for the strength I feel today.
I know that reading the Floxie Hope recovery stories in my initial phases of being “floxed” helped me tremendously, so it is my hope that my story provides hope of healing for others. My advice: write down a recovery plan and revisit it periodically – knowing that you are actively taking steps to get better will fill you with more hope. Know that healing from FQ Toxicity is slow and gradual, so use a pain journal to note small improvements. Be patient with yourself and take one day at a time. Pray for healing and trust that God can heal you in an instant, or He can heal you over time, or He can heal you in ways that are less obvious, but some sort of healing will come. After one year, FQ Toxicity does not consume my life anymore… there will come a time for you as well. I wish you all health and wellness.
** 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.