*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.
Jayne’s story, written by Jayne:
In January 2011, I’d suffered a series of stressful events, culminating in a failed real estate deal that left me crying and surrounded by moving boxes. I knew I’d pushed my body and spirit beyond where I should, but I had no idea how badly both would soon break down. I wanted to go to my favorite spa and lie in a hammock for a week, but decided to go to Disneyworld instead.
Please know that I’m a runner at heart. I was running about 15 miles a week at that point—not a ton and not terribly fast, but running was a spiritual and mental practice for me, a huge part of who I was. The last run I took before I got on the plane was followed by a dark chill that swept over me. I had a strange feeling that I might never run again. I shook it off, because who gets premonitions other than women named Rebecca in gothic novels, right?
Either food poisoning or a GI virus hit me hard in the magical kingdom. Let’s just say the restroom wasn’t the happiest place on earth when I was done with it. I went to the ER, thinking they would just hydrate me so I wouldn’t pass out (which has happened to me with prior GI illnesses). The doc was a second away from injecting Levaquin into my IV. I stopped him, saying my brother had ruptured his Achilles after Levaquin. He said Cipro was less likely to cause that. I thought it was a rare thing that of course wouldn’t happen to me, and my brother is a big athlete who played softball and football. I was just a runner and a hiker, and I didn’t know what tendinopathy was. So I agreed to take Cipro and Flagyl.
I felt weird and spacey on both drugs but tried to stay on them. I ended up back in the ER because I was scared to fly home feeling so off. While in the ER, I developed akathesia—uncontrollable urges to move my body. The ER docs were too busy or clueless to figure out what was wrong. I think they gave me Benadryl and Valium and told me I was fine. Um, yeah.
When I got back home, I forgot to take the antibiotics one day and felt suddenly tremendously better. I stopped taking both drugs completely. Later that night, I felt like someone had beaten my calves with a baseball bat. That’s when I knew something was really wrong.
A week or two later, the tendinopathy started (severe in both Achilles, milder in the tib and other tendons, moderate in my knees.) I’ve always been a terrible sleeper, but this got way worse. I’d lie awake as pain spread through my tendons and joints, or I’d wake myself up with my joints popping every time I moved. Then came the wailing wall—crying, depression, anxiety, fear: CNS side effects. I was limping everywhere. I couldn’t walk ¼ mile, couldn’t walk through the grocery store without feeling like I’d fall over, could not make it through a day at work because my Achilles would swell and hurt and get weak. I had to work at home for a couple of months—a career-buster for sure. But I had no choice. I wasn’t getting better—I was getting worse.
I thought at times I would lose my mind. I thought at times I HAD lost my mind. I cried a lot. The pain was unreal at times. One night, it felt literally like someone was carving the tendon of my left forearm. I think I tried to deny it, but being floxed was really that terrifying and painful.
It’s now August 2013. This summer, I hiked 7 miles up Mt. Rainier. I now intersperse my walks with runs. I don’t run as far or as fast as I used to, but I can feel my calves getting stronger. My cardio has tremendously improved. I lift weights for my upper body, do core strengthening, and hike regularly.
I still don’t sleep well, but then, I haven’t since I was a baby. I still have some pain in my Achilles and knees when I push myself, but I push anyway, knowing I need to make them stronger. I get weird shooting pains, but maybe I had those before—I don’t remember. I consider myself 85% recovered. And I am tremendously grateful to be able to do the little things, like take walks with my guy and the dog, walk to the store to get a soda, or run to catch the bus.
My unsolicited advice to floxies as you heal, delivered with compassion and love and understanding:
1. Do not identify with your illness. Do not adopt a persecution complex about how the medical industry done you wrong. This will feed your symptoms. Do you want to get better, or do you want to be a victim?
2. Do not read stories about suffering fellow floxies. This will only make you worry. Your anxiety is likely already bad enough. DO read stories of healing, like this one.
3. DO invest in your life as much as you possibly can. (We took a trip down the Oregon coast when I was still hurting and limping badly. I couldn’t yet run or even walk on the beach, but I could smell the air and watch the waves. It helped more than I can even say.) Stay engaged with what brings you joy: friends, family, hobbies, whatever exercise you can manage. It’s OK if you do those things a little differently. Go to a museum but sit regularly on the benches and stay just an hour. Go to a baseball game but park in the handicapped spots close by and take the elevator. Modify but don’t abandon your life.
4. Don’t present yourself to the world, especially the medical world, as a medical-phobic weirdo who thinks that Big Pharma is poisoning you. ALL my doctors, physical therapists, and pretty much everyone else believed that Cipro caused my injuries. Present yourself as a rational being who needs help, as I did. Tell your doc if he doesn’t believe that FQs caused your symptoms that you disagree, but will he help you get better anyway? And if people don’t believe you are sick or that FQs caused it, brush them off. You know your body.
What worked for me:
1. Physical therapy. I had to start over a couple of times and I did have setbacks. But I kept going. Ultrasound therapy was the closest thing to a miracle for me. I could feel the difference in my tendons immediately.
2. REST. REST. REST. I hated hearing this. I was a runner. We don’t rest. But rest helped tremendously, just as it does when we have the flu. Sleep as much as you can and need to.
3. Custom orthotics and night braces from the podiatrist. Expensive but worth it. I still need insane amounts of arch support. I’m sorry that flats are popular now, because wearing them even to the mailbox would hurt. I still have to wear hiking or running shoes with lots of support much of the time. Cute shoes are generally not possible for me, though I do still wear my boots on occasion.
4. Whey protein and vegetarianism. I am now terrified of antibiotics and other crap in meat. I drank Muscle Milk after PT sessions, which seemed to help. Remember that even “organic” meat is inflammatory and hard on your kidneys.
5. Avoiding supplements. They did not work and often brought on their own symptoms. Fish oil made me terribly nauseous and sick. Glucosamine made me bruise easily. EGCG seemed to do little or nothing. Epsom salt baths made me hot and itchy. Fruits, veggies, whey protein, green tea, and lots of water seemed to help a little. Supplements are largely snake oil for the desperate. Don’t waste your money.
6. Patience. I have virtually no patience and am legendary for this character flaw. But I was forced to be patient because I had no choice. Once the FQ stops telling your body to create weak tendons, you have to build those tendons back as strong ones. It takes . . . .
7. Time. You’ll hear this over and over and want to smack people who say it. But recovering from some injuries and illnesses really does take time. I’m not sure if this is harder or easier for those of us on the athletic side of things. But the waiting and struggling is hard for everyone. It’s not unusual for tendon injuries to take a year or two to get better.
8. Expecting setbacks. Yes, expect them, because they will happen. They are normal. The body and spirit don’t heal on a linear basis. Healing is jagged and unevenly paced. Maybe the cycles are telling us to chill the heck out.
9. Refusing to give up. Some floxies have recovered after years of being injured or sick.
10. See #9. Don’t give up. Rest, but keep fighting.
** 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.