*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 October 11, 2014, just before my 28th birthday, I was jolted awake in the middle of the night by the sensation that bees were stinging me from head to toe. Tingling sensations crept all over my body; phantom pins and needles pricked and burned my hands and feet; roving numbness caused me to lose sensation in one finger, then one toe, then one earlobe; and what felt like icy water slid up and down my limbs. When I tried to get out of bed, my legs would not support my weight, and I crumpled onto the floor. As I hoisted myself back into bed, all of my joints popped and crunched with the exertion, random stabbing pains sliced through my neck and shoulders, and my muscles – all of my muscles – in my jaw, my abdomen, my feet, were aching as though I had the flu. Once lying still again, I noticed that, one by one, my muscles were twitching – first in my right toe, then in my cheek, then my left eye.
As I lay there in the dark, my mind whirling to comprehend what was happening, I thought about the past few days, attempting to pinpoint a cause. The only thing I had done differently was take the prescribed dose of antibiotic Ciprofloxacin (generic Cipro) for what my doctor’s vacation stand-in suspected to be a UTI (based on symptoms and white cells in the urine – I later found out that no culture was actually done).
At first, the idea of an antibiotic being responsible for the bizarre symptoms I was experiencing seemed laughable. After all, when I got a migraine after the first dose and had called the pharmacy, the pharmacist assured me that since I am prone to migraines, such a reaction is common and I should continue on the drug. She also suggested an NSAID pain reliever, but my instincts told me that adding more drugs to the mix would be a bad idea (I would later learn that NSAIDs drastically increase the risk of an adverse reaction to Flouroquinlones).
When the migraine continued into a second day (unheard of for me, even as a lifelong migranuer), I still avoided the NSAIDs and continued on the Cipro as prescribed. When, by the second evening, my legs seemed a bit weaker than normal, I chocked it up to 48 hours in bed with a headache. The fact that it could have been the Cipro never crossed my mind.
Now, as I lay in bed after only three days on the drug, my whole body in revolt, I reached for my phone in search of answers. The phone itself seemed to weigh a hundred pounds, and my wrist gave out upon trying to lift it. I finally managed to situate it in such a way that allowed my aching fingers to type “Adverse reaction to Cipro” in the search bar.
What popped up was terrifying.
Countless stories of previously healthy people who had been permanently disabled, ended up in wheel chairs, experienced chronic pain, lost their cognitive abilities, developed psychiatric problems, – all from an antibiotic prescribed (in most cases) for minor infections — filled my iPhone’s tiny screen.
How is this possible? I thought. The reactions seemed so unrelated and so numerous, affecting virtually every system of the body. The one thing they all had in common was that they were utterly devastating. From an antibiotic?
The disbelief quickly dissolved into the panicked realization that what I was experiencing may only be the beginning. I called the pharmacy again and told them what was happening. This time, a different pharmacist spoke to me and told me I should have stopped taking the Cipro at the first sign of migraine. I was never able to determine the name of the first pharmacist I had spoken to, the one who had instructed me to continue on the drug. I then called my doctor’s emergency number, and the on-call physician told me to stop the medication and come in first thing in the morning.
This was the beginning of my journey as a “Floxie.”
I was diagnosed with the following conditions: widespread muscle deterioration; body-wide tendon damage (which put me at risk for rupture); and damage to my peripheral nervous system resulting in neuropathy (which caused chronic pain, extreme weakness, and severely limited mobility).
For the first few months after being “floxed,” I was almost completely bed-ridden. I could barely walk from my bedroom to my bathroom, and I often needed help dressing and undressing, cutting food, washing my hair, and lifting anything heavier than leaf of paper. My teaching job found long-term substitutes for my classes, and I was out of work until December, when I went back to work VERY part time (only one class). Being around my students again brightened my outlook immeasurably, but cutting so far back on work had drastic financial consequences, as my husband (also a teacher) and I were still paying rent, heat, etc. We have since moved out of our apartment and back in with my family while we get back on our feet.
As the months went on, the symptoms gradually became less severe, with better days and worse days. By April, I was teaching my normal class load and keeping up with my freelance writing deadlines again, and I was even going for the occasional short walk on good days. By June, I was having entire weeks where I felt relatively normal. I even went on a short hike and drank a glass of wine.
Then, on June 3, at the instruction of one of my doctors, I took Aleve for a migraine, as I was told it had been long enough and it was safe. Within twelve hours I was back to square one with regard to the peripheral neuropathy and mobility issues, and my migraine frequency increased severely (from once a month to multiple per week). It was at this point that my neurologist also diagnosed me with central nervous system damage, specifically the impairment of my GABA system, resulting in chronic migraine and hypersensitivity to medications and substances I once tolerated well, like NSAIDs, steroids, caffeine, alcohol, benzo drugs, etc. This leaves me with very few viable painkiller options for my migraines, which is something I am still trying to figure out, as they are frequent and debilitating.
Since the backslide in June, I have been recovering, with a two-day stomach bug in August significantly worsening the pain, neuropathy, fatigue, and impaired mobility symptoms again for nearly two months.
As of this writing (February, 2016), I have only occasional neuropathy, mobility, pain, and fatigue issues, though my chronic migraines persist. As a teacher, I am doing everything I can to keep my immune system up (as I dread another illness that could set me back by months the way the stomach flu did). Interestingly, common colds do not seem to aggravate symptoms. My neurologist suspects this has to do with whether or not a fever is present and my impaired GABA function.
Things I Did (and Do) that Seem to Help, and The Upside of being a Floxie:
Epsom Salt baths: I do this every night before bed and also on mornings when I wake up with pain, weakness, or an oncoming migraine.
Acupuncture: This is something I did not begin until my Aleve-induced relapse, but it has been profoundly helpful both physically and spiritually, helping to cut down on migraine frequency a bit and helping with fatigue and neuropathy. I never imagined that I, a person who still gets teary-eyed and needs to lie down when having blood drawn, would willingly have needles stuck into my body on a regular basis, but it is worth it. Like most things, I am certain it depends on the practitioner, and I have happened upon one whose personality and gentleness complement my needs.
Supplements: I follow the suggestions in the Levaquin Toxicity Solution book quite closely, taking magnesium (in the form of Magnesium L-Threonate), Vitamin C, CoQ10, RLA, Probiotics, Turmeric, a B complex, Iron, and PA-free Butterbur for migraine prevention. I take D-Mannose to help prevent future UITs, and to help with digestion and bolstering my immune system I take apple cider vinegar in the morning with warm water, lemon, and raw, local honey. I also take a tablespoon of elderberry syrup in the morning and at night mixed with water.
I avoid: Caffeine, Alcohol, NSAIDs, Steroids, and any substance or medication known to affect the GABA system.
Emotionally/Spiritually: The Up Side:
Yin Yoga: Yin Yoga is a form of yoga that focuses on relaxation and settling deeply into a gentle pose (usually on the floor, not standing). Each pose is held for several minutes, allowing a great deal of deep breathing and meditation while letting your body gently settle into whatever stretch the pose strives for. This is something I only recently began doing, and I truly feel that one hour of this class has a more profound effect on me than any religious service, therapy session, workout, or calming drug/drink ever has. It slows my ever-racing mind and helps my body relax, both of which are difficult feats for me to achieve on my own sometimes.
Time in nature: I’ve always been an outdoors person, and while I may not be able to hike a tall mountain yet, there’s nothing stopping me from driving to the top and enjoying the view anyway. Also, I often just walk into the woods by my house, find a place in the pine grove, and just be still. Somehow, being around nature grounds me and calms me.
Practicing mindfulness and seizing the joy and peace available to me in the present moment (even with pain): I sought a therapist who specializes in mindfulness, and she has been remarkably helpful. I have learned that my life is not on hold or over; I am still very much alive, and I have the power to seize every ounce of joy and peace at my disposal if I can just let go of how I think things “should be.” For instance, I had bought a sparkling sequin dress before getting floxed, which I planned to wear that New Year’s, but since I was bedridden, I never wore it. This New Year’s, while I was somewhat better, I still could not go out and party. I decided it was silly to hold off on wearing my dress; it was silly to keep the good crystal in a cupboard until I could drink champagne again; so, I put on the dress, did my make-up, ordered takeout, put on my comfy slippers, and drank sparkling cider out of Waterford glasses while watching re-runs of funny TV shows with my husband and cat. And you know what? It was perfect. It wasn’t “good enough” or “the best I could do under the circumstances.” It was perfect.
Of course this is easier said than done many times, and I have plenty of moments when I burst into tears and wish it all away, but I’m learning to accept and be present in those moments too, rather than berating myself for “wallowing.” Which brings me to my next point:
Giving myself permission to have bad days: I have always been a hyper-responsible type of person, and it has been difficult for me to learn to let go of the guilt associated with being unable to make/keep plans, turning down invitations and work projects, and taking time for myself when I need to. This is something I am continually working on.
Advocating for myself and spreading awareness in person and through my writing: I am not shy about telling people what has happened to me; my hope is that I might be able to prevent the same thing happening to another person. I have learned that in telling my story, however, I must also let go of the response; some people will not or cannot understand for any number of reasons, and their reaction, I’ve learned, has little or nothing to do with me. I took this to the next level by providing written testimony for the FDA’s November 5th meeting. Writing the letter and knowing I had said my piece was cathartic, and hearing back from the organization directly was validating; the fact that they ruled in our favor was profoundly hopeful. Writing this for the Floxie Hope page has also been cathartic and positive, as this webpage was my only source of hope at the beginning, and if I can contribute to that in any way, I am deeply grateful.
I did not intend on this being so long, and if you are still reading, please know that I am in your corner. My thoughts are always with my fellow Floxies, and from what I have seen from my year-and-a-half as a member of this accidental club, we are capable of great things, both individually and as a group. Whether it’s celebrating that we were able to lift our own teapot this morning or moving mountains with major regulatory bodies, we are moving forward.
With love and solidarity,
** 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.