*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.
I’ve delayed writing this for quite a while.
I have had the terrible fear that my recovery was tenuous, short-lived, like an anvil of pain and sorrow was still hanging over my head on a thin string, just waiting for an excuse to fall. But I’ve given it time, a lot of time, and it hasn’t fallen.
I have been poisoned, lied to, and gone unbelieved—and yet I am here to say it gets better for most, to say many floxies do recover and heal and find meaning through this journey.
All that may seem well-intentioned but facetious, so let me just tell the story, my story, which is not yours but might be a cousin of yours, and hopefully you will find some kind of solace in that.
My early birthday present in June 2014 was levofloxacin. After recovering from an ear infection in late May with the help of Omnicef, I was still experiencing nasal congestion and mucus in the corners of my eyes upon waking. My pediatrician examined me, concluded I had a sinus infection, and prescribed a ten-day round of levofloxacin, the generic for Levaquin.
Each pill was 500 milligrams. There, on the list of side effects dutifully printed out by Walgreens, was a warning: sudden tendon rupture could occur in people 60 or older.
I wasn’t 60 or older. I wasn’t even 21. That would happen in a little over a week.
I took a dose before going to work. At night, peculiar pains stole through my legs, the heads in a whack-a-mole, popping in and out in different places. I tried to focus on their origin, but they evaporated just when my attention found them.
It was on a walk, late in the afternoon the third day of so-called treatment, four or five hours following the pill, when the damage threshold for my mitochondria broke.
An unbearable tightness coiled around the back of my right knee. I limped home. I put ice under my knee, thinking somehow I had strained it. It’s funny how our first impulses of blame tend to fall on ourselves, even for things we did not do.
Then I remembered the half-read printout from Walgreens. Frantically I checked it. There was little, if anything, about people my age, but it said to call your doctor if you experienced any adverse effects.
I did so the next morning. She said nothing of the sort had happened to any of her patients in the twenty years she’d been practicing. There was a tint of doubt in her voice, but not enough to keep her from switching the prescription to Augmentin.
As far as I can tell, I had no negative responses to the Augmentin—and I had 20 days’ worth, to combat a sinus infection I would later learn was never there in the first place.
Most illnesses are acute. They last less than a week. You might take a day or two off work, but that’s it. You’ve got bills to pay, work to do, social activities to partake in.
Fluoroquinolone toxicity is not acute. It usually gets worse before it gets better.
And it got worse for me. There was a general weakening of my muscles and my fitness. Things I once did with ease left me breathless. Various parts of my body began twitching, almost in a morbid choreography, passing the electrical baton to other areas.
About a month and a half after being floxed, I went for a bike ride. I was young, after all, and young people are invincible. I pedaled slowly, as if I were trying to cross a gulf of air on a tightrope. It seemed to be going okay. Then I got off while the bike was still rolling, and my right foot hit the ground fairly hard. I would have absorbed it just fine if I had been healthy, but I was not healthy. Perhaps on the outside, but not the inside.
The next day it felt like my achilles tendon was trying to snap. When I read Ruth’s story several months ago, she described a pain that was like a thin sheet of cells tearing, and then the pain would disappear. I recognized that pain; that was my ankle.
I didn’t bike again that summer, and it made me restless. I have two outlets for stress in my life: writing fiction and biking. Floxies don’t do well with restlessness.
Autumn sliced into summer, stealing away its warmth and humidity. It would have stolen mine, too, as it does to many other Chicagoans, but levofloxacin had already done it. Three pills had left me unable to exercise, run, swim, or be creative.
Because the symptoms were not just physical. They were mental. I was depressed, anxious, and constantly on the internet, looking for answers, looking for treatments, looking for people who have done this and gotten through to the other side.
I found Floxie Hope in August. I clung to it. I monitored it every day, to see if someone new had put a hopeful message in a bottle to drift across the ocean of cyberspace and reach me. (Some days I did; that is why I am writing this now.)
There are far too many small instances of weakness and decline to delve into here, or anywhere. They are best left to the dustbin of memory, safely undisturbed. But I do recognize certain events that delayed my recovery, and certain events that helped it.
In late August, the week before returning to college, I got all four of my wisdom teeth pulled. The surgeon was kind, understanding, and gentle as a person can be when they are extracting bits of reluctant bone from your head. He agreed that he would not prescribe me any fluoroquinolones after the surgery.
He did prescribe me dexamethasone, to keep down the chipmunk cheek swelling many people experience after a four-tooth extraction. Dutifully I took it, though I had read somewhere or other that fluoroquinolones and steroids don’t play well.
The weakening accelerated. My ankles felt brittle. I no longer walked on curbs, because I feared if one foot slipped, so would my achilles tendon. Whenever I got in the water to try swimming, the tightness behind my knee would always be there.
Even my fingers were atrophying. Just pressing the lock button on my car hurt.
And then I found something that I credit with saving me. Because it did. Actually, I found it through Ruth, whom must have been guided by God to find it herself: MitoQ.
I am not a salesperson for MitoQ, but I am a grateful customer. I started taking it in February, one dose a day, and I have only seen consistent, dramatic improvement.
It is wonderfully powerful. I do not consider myself sick anymore, and that is only after four months since starting it. I ride my bike. I swim. I run. I play sports. I laugh, I eat, I write, I live. It is expensive for a supplement, but the gift of recovery is priceless.
It is exceptionally rare in medicine, especially do-it-yourself medicine, to identify causation. So many factors interfere between cause and effect. But this is one situation where the relationship is undoubtable. MitoQ has freed me from the shackles of fluoroquinolone toxicity, and I tell everyone I know about it, even those who suffer from other afflictions such as multiple sclerosis, POTS syndrome, or chronic fatigue.
Some people heed my story with wide eyes. Some people receive it with narrowed ones. Eventually I realized I can’t decide for them whether they ever knowingly take a fluoroquinolone. It’s not my body. It’s not my life. But it does little good to get angry at those who have heard you and still take the Cipro their doctor gave them for some green mucus that lasted a couple days. They are just trying to rid themselves of their affliction, however temporary, the same as we are, and they happen to trust their doctor.
You can ask them to reconsider. You can ask them to discuss it again with their physician. You can give them information. You can’t extract the drug from their blood.
Speaking of drugs: I spent a lot of money on supplements and alternative treatments, as I’m sure you all have. I was born with a wooden spoon, not a silver spoon, and so I’ve learned firsthand which ones are probably worth it and which ones aren’t.
This is not meant to be a comprehensive, definitive list of what works and what doesn’t. It’s not meant to be professional medical advice. I’m not a doctor. I’m not a nurse. But it is a comprehensive, definitive list of what worked and didn’t work for me.
As always, your mileage may vary.
WHAT DIDN’T WORK:
Vitamin D (2,000 IU daily). I never noticed any difference between taking it and not; however, if you’re in a place with harsh winters/little sunlight, definitely keep up on it.
Vitamin C (500 mg daily). I only still take it for my immune system.
Cissus quadrangularis (500 mg daily). This is a plant extract that some bodybuilders swear by for injury recovery, but it didn’t work for me.
Vitamin E (200 IU daily). This supposedly has antioxidant properties, though I didn’t benefit from them.
Magnesium lotion (Ancient Minerals). Many floxies report this being effective on twitching muscles, but I never experienced that benefit. It doesn’t mean you won’t!
B Vitamin Complex. This only gave me diarrhea (too much biotin can do that).
Magnesium citrate (250 mg per dose, one or two doses daily). Magnesium in any form is great to take, but this form is harder to absorb than liquid configurations.
WHAT DID WORK:
MitoQ (mitoq.com). I take one dose in the morning. Be consistent.
Liquid magnesium (300 mg), from liquimins. It’s in a big blue bottle: (http://www.traceminerals.com/products/liquid-tablet-minerals/liquid-magnesium). I just mix it into my water, orange juice, or other drink of choice. There’s a fairly strong sweet taste to it—surprising for a metal—but you’ll get used to it. One tablespoon a day.
Good multivitamin. I’m not sure it matters which brand.
Quercetin with bromelain (http://www.amazon.com/gp/product/B002JNK8EY). Quercetin helps with histamine regulation, so it’s nice for allergies. Bromelain is naturally occurring in pineapple; it helps down-regulate inflammation. Now Foods is based the next town over from mine, and they are a very reputable manufacturer.
Time. This is the hardest to accept. We floxies feel we’ve wasted enough time already. Haven’t I lain in bed enough? Haven’t I lost enough fitness? But we can be patient, we must be patient; it’s not really a choice.
Activities and routines. Whatever activity you enjoy and can still do, do it. Write. Read. Paint. Walk (carefully). Sing. Listen to music. Play music. Talk with friends. Watch a movie. Fight the brain fog with brain food. Pain is worse if it’s all you feel.
Take care of yourself otherwise. Brush and floss your teeth. Wash your body and your hair. Get dressed in the morning, even if it takes you a while. Lounging around in your pajamas 24/7 isn’t good for anyone.
Don’t withdraw from the world (as much as you can). It’s a primal instinct to retract yourself when you are injured. Floxies ARE injured. But try to expand your sphere, even if it hurts. Talk to family, talk to friends, talk to neighbors, help them if you can.
It may be obvious, but I will never return to my pediatrician. I’m not sure how much blame can be assigned to her. She did prescribe levofloxacin, of course. As a physician, she also tries to base her decisions on empirical data. If the data on adverse drug reactions in the fat little book of prescription medications every doctor seems to carry isn’t accurate to begin with, is it really all her fault? Can everyone be expected to independently verify every piece of data all the time?
No, they can’t. But I still won’t return to her practice. Forgiveness may come—eventually—but it’s not eager to arrive yet. It will have to happen, I know. It will. Often the poison of withholding forgiveness is worse than the crime being forgiven. And don’t we floxies have enough experience with poison?
I was lucky enough to find an allergist in August who not only practices nearby, but was sympathetic in trying to understand my situation. There was no immediate dismissal, no turning to the computer, no perusing the fat little book to see if I was telling the truth or not. He blocks off two hours for every intake appointment. He listens.
I suppose that’s what all of us, floxed or not, are trying to find. Listening.
And out of listening comes comprehension, and out of comprehension compassion, and out of compassion recovery. If not physical, at least emotional.
One of my coworkers likes to recite a certain motivational phrase: success through a positive mental attitude. Out of that, I’ve come to find, all good things flow.
P.S. I need to write this little postscript just to thank Lisa for all of her dedication and hard work. MitoQ saved my body; Floxie Hope saved my mind.
If I can be so bold as to suggest a bit of music therapy: Mumford and Sons have an absolutely gorgeous song called “After the Storm”:
“There will come a time, you’ll see
With no more tears
And love will not break your heart
But dismiss your fears
Get over your hill and see
What you find there
With grace in your heart
And flowers in your hair”
** 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.