*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.
Lisa’s note – Gen sent this her story along with a note that said, ” I hope this can help someone. I had been waiting to write my story until I was 100% better, but maybe someone out there needs to just know that you can get mostly better in even 8 months!”
I was floxed by the generic form of Cipro in August 2013.
I was 41 when I was floxed. Unlike many Floxies, I was not in perfect health beforehand. I suspect I had been floxed a number of years prior without realizing it. However, my health issues just prior to floxing likely had nothing to do with prior floxing. The most recent floxing in August 2013, while horrifically terrifying, served as a catalyst for me to seek new medical providers who helped me find out what was going on in my body. Prior to floxing, I had pain in my joints and bones, had difficulty losing weight, had some fatigue and mood issues, and had GI issues, namely constipation. Floxing added more pain and heartache to the mix. My story is also complicated because I was given Macrodantin shortly after Cipro.
I developed a UTI and went to a walk-in clinic, not wanting to take time off work to see my regular PCP. I self-reported allergies to numerous medications, so they prescribed Cipro. In hindsight, I have learned that many people self-report allergies to medications that are not true allergies. If doctors would only encourage allergy testing to resolve this issue, many people like myself may be spared being prescribed more powerful antibiotics such as Cipro.
My first noticeable reaction began after 1 pill: a body-wide sensation of being on fire. I also began to feel muscle weakness all over. I called my regular PCP the next morning and described my symptoms and asked if I should stop the medication. The nurse replied that those were not side effects of Cipro and to continue taking the medication. The pain intensified and worsened. After 4 days, the tendon pain in my Achilles was so unbearable that I had to be pushed around in a wheelchair as we moved my son into his freshman dorm; not the image I had in my mind of being a good college mom! The following weekend after completing course of 6 pills, I had painful kidney pain and bladder discomfort. I went to an urgent care clinic because it was a weekend (again, a poor idea). I was prescribed Macrodantin without a culture being done. I was concerned about taking it because I had diagnosed B12 deficiency, but the doctor told me that having a possible kidney infection would be much worse than a medication side effect. How wrong he was!
After just 2 pills, I developed liver pain, nausea, and chills unlike anything I had ever experienced. I was so ill I could not eat and immediately went off all medications (I was on several). I also began to have a severe burning sensation in 3 major tendon areas: both Achilles tendons, both forearms, and my upper back between the shoulder blades. I could barely move and was in terrible pain. I described it as a nuclear bomb going off in my body. Out of fear and desperation, I got online to try and find out what was going on and look for help. The information I found led me to try magnesium oil. I immediately felt a lessening of the intense fire, but the tendon pain would last for months.
I also developed GI symptoms that still have not been explained, despite much testing. Doctors simply cannot find anything “wrong” with me.
My symptoms included the following:
- Tendon pain. No doctor I ever saw even examined my tendons. They just looked at me with a blank stare; even the “good” doctors. The good doctors at least took my word for it.
- GI issues and bladder discomfort. I developed intense upper abdominal pain that landed me in the ER. I had numerous tests and scans with no findings, no answers. I lost over 70 pounds (which I needed to lose). I could no longer eat some foods at all. I often felt as if I had another bladder infection and would get to the doctor, only to have nothing show up.
- Inability to live life. I was in a wheelchair when we moved my son into his freshman dorm. During the months when I should have been enjoying an empty nest, I was spending hours and hundreds of dollars visiting doctors, having tests, buying supplements, and fearing the worst.
- Pain. The worst pain was in my upper back. I have had a previous injury in that area, and I feared the worst. I spent 6 months in physical therapy before I had real relief.
- Fear and Anxiety. I was terrified that I would tear a tendon. I was terrified that I would never get better. I was terrified that it would get worse. I was terrified all the time.
After 2 weeks of being at home, I forced myself to go back to work. I walked like an old lady and would stay as long as I could and then go home early. I am a mental health counselor, and it was hard not to be able to be there to help my clients. I am grateful for a supportive supervisor and coworkers. The following things were helpful to me:
- Physical therapy using myofacial release and water therapy. I have a PT who is in her 70’s and has styled her own form of PT based on holistic knowledge of the body. She got me in the water and used gentle myofacial techniques to help relieve the pain and encourage my body to heal. Even at her age, she had never seen anyone who had been floxed.
- Magnesium. Magnesium made all the difference. I did not respond well to other supplements at all and found them to be a waste of money.
- Bone broth. Well-made bone broth was soothing to my GI system and helped me get some nourishment even when I was very ill. I like to think that the vitamins and nutrients helped me to heal as well.
- Changed diet. I immediately began eating only meat that was antibiotic free and hormone free. Conventional animal practices use fluroquinolones as the main antibiotic given to animals; when we eat it, we are re-exposing our bodies to fluoroquinolones. For months, if I accidentally ate conventional meat, I would have tendon flares for 3-4 days.
- Moving as much as possible. Going back to work was one of the best things I could have done. Laying or sitting around too long will only make the tendons worse, plus you lose muscle tone.
- Leaving the online forums. The online groups were tremendously helpful to me in the early months, and I am forever grateful for them. However, as the months went by, I found myself experiencing intense anxiety with every Facebook post. I made the decision to stop visiting the forums and to unfollow the Facebook pages. I have noticed that my anxiety about floxing is greatly reduced (in fact, I rarely think about it), and I don’t notice my symptoms as much as I used to.
A silver lining to floxing
Floxing caused me to step up my game in seeking better medical providers. I found 3 excellent medical providers in my area who believed me about the floxing (even though they had never seen it before), and they discovered I am allergic to wheat, dairy, shrimp, bananas and have a number of other food sensitivities. I was also diagnosed with Hashimoto’s, which makes sense given my family history and the symptoms I was having for years. I found out I was severely deficient in Vitamins B12 and D. I radically changed my diet and lost over 70 pounds, which was much needed. I also have stressed to my children to never take a fluoroquinolone. My daughter shared that as a freshman in college, she was given multiple rounds of Levaquin for a UTI that would not go away and was later determined to have been caused by Yasmin. She still has some joint pain but is healed, for the most part. When my son was at college, I informed them to never give him a fluoroquinolone, and the school nurse informed me that the nurse practitioner had sent a recent memo saying that she was going to give Levaquin as a first line antibiotic to all college students. I shared the information I learned and my own experience; they had never heard of this effect of fluoroquinolones and were going to look into it. I can only hope my story has spared some of their college students!
I am now 8 months out. I still have residual tendon pain, especially when I try to exercise or exert myself. But I can exercise, and I can do things. I have lingering upper abdominal pain which is probably my most bothersome symptom because no cause has been found. I have better health overall because Floxing gave me the reason I needed to take more control of my health.
I believe that I had a negative response to Cipro that was exacerbated by the Macrodantin. I also believe that the at-that-time undiagnosed health issues I had, such as vitamin deficiencies and Hashimoto’s, also contributed to my body responding so poorly to the medications. My body didn’t have what it needed to handle them.
- Find good medical providers. There is a difference between a doctor who has never heard of floxing before but will still treat you with dignity versus a doctor who is arrogant and treats you like your crazy. Keep looking around until you find the good ones; they DO exist. When you find one, let them know how much you appreciate their compassion. I had luck finding an integrative doc about 40 minutes from my home; it is worth the drive!!!
- Be positive. There is hope. You can get better. The majority of people who have a negative reaction to a fluoroquinolone DO recover!
- Don’t give up! Keep going. Keep taking care of yourself. Find something or someone in your life to give you a reason to keep going.
- Try to be as active as possible. Even if you can’t do what you used to, still do something.
- Let people know what is going on. Don’t feel embarrassed or ashamed. Most people are prescribed antibiotics at some point. Any of us can have a negative reaction. Share to build awareness not only for your own pain and suffering but also to educate others.
- Change your diet. Avoid meat unless it is antibiotic free. It may be more expensive or harder to find, but re-exposing yourself to fluoroquinolones through what you eat will delay your healing. Eat clean as much as possible, meaning organic fruits and veggies. Stay away from sugar. Help your body heal itself by using good nutrition.
- Use online resources to help you and help others, if you can. If you find yourself feeling overwhelmed or anxious, leave the online stuff behind or at least take a break. Remind yourself that those who are better are out living life and not hanging around their computers.
** 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.