As if having the connective tissue disorders Ehlers-Danlos Syndrome and Fibromyalgia weren’t bad enough, I found myself one night, with welling eyes of tears, realizing I had just been “floxed.” My initial thought was, “There’s actual terminology for this? This can’t be good.”
Just a few days prior I was written a prescription for the antibiotic Ciprofloxacin, usually referred to as Cipro, from the class of medications known as fluoroquinolones. A sense of urgency to get the prescription filled my determination. Not having taken antibiotics since my childhood, I didn’t quite realize what I was in for, neither did I think to do any research on the matter. Honestly, I was thinking, “Thank god I live in a time of antibiotics!”
I’m one of the “lucky” Cipro cases. Wednesday morning I received a call from my doctor to stop taking the Cirpo. He explained that I didn’t have an infection and that the medication was not needed. Having taken one pill on Monday and three on Tuesday, he instructed me to finish out the day by taking two more. Even as I took that last pill, I had a gut feeling that I shouldn’t.
Within days of taking the medication, I noticed that the tendons in my fingers and hands were aching: a wicked feeling that I had never felt before. “Was I typing too much yesterday? But my hands have never felt like this. I can feel every aspect of each tendon.”
As the hours rolled on, my body began to ache worse than any Fibromyalgia pain that had ever plagued me. Near my shoulder blade, I felt a sharp stabbing pain. As I attempted to walk, I experienced leg cramps. In my mind, I went from my usual sunny disposition to a severe depression with a doll-like stare over my eyes. My stomach had an ache that lasted for days.
If there is any one positive thing that the world of E.D.S. has, it’s the network of tips, assurance and guidance from others. Immediately I found myself in an E.D.S. support group asking if anyone ever had problems with taking Cipro. Honestly, I was googling Cipro & Gluten, thinking I was having a gluten-sensitive reaction. Within moments, someone answered back using the term “floxed”. Apparently, there have been thousands of people, even those without EDS, who have reacted horribly to Cipro.
My anger was directed at my doctor for prescribing this medication to someone with Ehlers-Danlos Syndrome and Fibromyalgia. As I spoke with him on the phone, he explained that neither of the two conditions were “contraindications.” I realized that I should not be angry at him, and it was my own fault for not researching this chemical I was introducing into my body.
Day by day, my symptoms were worsening, and it had been days since I even took the damned drug. The tendon coming up from my Achilles heel shocked me with intense pain whenever I took my dog for a walk. Shuffling substituted for walking, as I was afraid I would become one of the many I had just read about that had their tendons rupture. The all-over pain I was experiencing graduated into severe pain with muscle spasms, and my depression was not disappearing. A full week after my last dose of Cipro, I had to stop myself, four times, from crying during my car ride home. I felt as if I could no longer drive anymore. The walls were closing in.
As I researched, I came across numerous accounts of people being crippled from Cipro, with these horrible symptoms lasting anywhere between one and two years. The stories are sad, for the victims and their families, alike.
The more I researched and reached out, the more I was piecing together. One fellow EDSer mentioned something about a fluoroquinolone inhibiting a particular vitamin. In my findings, comments about magnesium deficiency kept catching my eye. For years, many people with EDS have complained of being deficient in magnesium; myself included. The following day, another fellow EDSer reached out and commented about a possible link with Cipro affecting those deficient in magnesium.
Within moments of searching online, I found two accounts of people turning almost completely around with the help of topical magnesium. Springing from my chair, for the first time in a week, I went to the cabinet and pulled out a bottle of magnesium cream I had almost forgotten about. Applying this cream to multiple thin-skinned areas of my body, two to three times a day for two weeks, I desperately hoped this would relieve some of my symptoms. Expecting my recovery to take anywhere between 10-14 days, I was elated when I woke up on the second day as if nothing had ever happened. The nightmare was over!
Attributing my quick recovery to my short duration of taking the medication, I realized I am one of the lucky ones. I escaped, but many others still suffer or still have the prospect of also falling victim to this horror.
With a sensitive nervous system as well as having the possibility of being deficient in magnesium, many people with Ehlers-Danlos Syndrome and Fibromyalgia may want to ask their doctor for an antibiotic that is not in the fluoroquinolone family. My doctor recommended that I call all of my doctor’s offices and pharmacies to have them document that I react to fluoroquinolones, to avoid the fluoroquinolones Cipro & Levaquin, and to try either Bactrim or Keflex the next time an antibiotic is needed.
With my research and questioning, I came across numerous EDSers that were affected by Cipro and Levaquin; however, I also came across a few people that were not affected by these medications. Searching more, I read how some people were affected after they took these medications for a second or third time. With a little searching yourself, you’ll come across countless stories of people actually contributing their Fibromylagia to fluoroquinolone toxicity!
It seems as if a fluoroquinolones affects mitochondrial DNA content and behavior. The mitochondria is involved with cellular calcium signaling. Magnesium acts as an antagonist to the calcium channel therefore possibly reversing any damage from the fluoroquinolones.
Obviously I am not a doctor, and I’m only speaking from experience, but for me as well as others using topical magnesium as a treatment for being floxed has worked wonders. If you have been affected by taking these antibiotics, and have not suffered liver or kidney damage, a topical magnesium treatment may be worth a shot toward recovery. As with anything, it’s important to talk to your doctor first, but unfortunately many medical doctors are not often trained in mineral therapy.
Through topical application, this mineral is able to instantly absorb into your bloodstream, bypassing your first phase of metabolism (not to mention your possible decreased ability to efficiently absorb nutrients through your gluten-damaged gut). Please note, that if you have liver damage from taking a fluoroquinolone, you may have trouble with supplementation, as there are some cases of people being hospitalized from magnesium treatments. If someone were to use this topical treatment, please take the supplementation with supervision and precaution. It may be best to dilute the topical application. Other “floxies” have absorbed their magnesium by taking Epsom salt baths. With anything, it is wise to take things slowly: an Epsom bath every day could possibly be too much.
This would also be a good time to mention the importance of taking a probiotic to protect your digestive tract anytime you are taking an antibiotic (during and after, whoever you are). Probiotics do not decrease the efficacy of the antibiotics, but they do help replace the essential “good bacteria” in your gut which are indiscriminately destroyed along with the harmful ones by antibiotics.
When starting any round of any type of antibiotic, it might be wise to supplement with a non-dairy probiotic, so check your labels if you think that pertains to you (eg. gluten intolerant). If one can supplement with both a topical magnesium and a probiotic, then one may avoid many of these serious dangers of taking antibiotics. Remember: Pro-biotics work best if taken hours after the antibiotic.
Fluoroquinolones are very strong medications, as they are sometimes referred to as “the nuclear bombs of antibiotics.” If you have a known similar connective tissue disorder and you find yourself in the situation of having to take an antibiotic, know the risks and talk to your doctor about other options. Everyone reacts differently to medications. If your infection is not in need of a medicinal Hiroshima, then taking the safer route may save you and your loved ones a great deal of unnecessary pain.
If you are in need of a support group, check out this good bunch here.
Resources:
http://drsircus.com/medicine/magnesium/the-power-of-magnesium
http://www.naturalnews.com/032714_magnesium_cipro.html
http://aac.asm.org/content/50/5/1664.full
the gluten free yogi 
Very nice article! It’s well researched and informative. Thank you very much for putting this out there!
I too am a “Floxie.” Like you, I have recovered. It took 18 months, but I did recover. If you want to read my story, you can do so here – http://floxiehope.com/lisas-recovery-story-cipro-toxicity/
Something that you mentioned but that I want to reiterate is that Cipro does not only hurt people with EDS (though some of the worst cases I’ve heard of have been of people who have EDS before they get floxed), it hurts everyone. It depletes mitochondrial DNA and once your mtDNA is depleted “enough” you will have an adverse reaction. Adverse reactions range from people being bed-bound for years, to cases like yours and mine, where we recover.
Getting “Floxed” (other fluoroquinolone drugs – Levaquin/Levofloxacin, Avelox/Moxifloxacin and Floxin/Ofloxacin – have the same effects) is terrifying. It’s reasonable to feel terrified when, suddenly, your body and mind fall apart. Also, severe anxiety and feelings of doom and death are common symptoms. For any of your readers who are going through it, please have hope that recovery is possible. I have stories of hope and healing on http://www.floxiehope.com. If you want to share your story on floxiehope, please let me know. Also, if there are any posts on floxiehope that you would like to share with your readers, please feel free. 🙂
Also, there are support groups on facebook. Here is the biggest one – https://www.facebook.com/groups/46690244194/
Thanks again for the article! Good job! 🙂
Lisa
Lisa,
What a beautiful comment!
I just read your personal story and what an inspiring one it is! To anyone reading this, check it out:
http://floxiehope.com/lisas-recovery-story-cipro-toxicity/.
Thanks so much for sharing the other story you messaged me on facebook. I didn’t realize the depths of this dilemma. Reading her story reinforced the importance of this matter.
It’s so great to hear that your healthy lifestyle choices have had so much of a positive effect on you! Sounds like lasting effects, too!
I’m actually glad you spoke a little about the truth, too. That reading these horror stories can create some anxiety. After I posted this article I was hearing stories left and right. Mentally, I was able to deal with what I was reading, but physically… it was almost as if I became more aware of certain pains, now attributing the pains to the Cipro. I’m a firm believer in mind over matter, so these negative thoughts were not helping my mental/physical state. I had to take a couple days away from the floxed world and readjust myself.
Amazing that you were able to learn some Jon Kabat-Zinn techbniques! He’s great! Calming our minds has everything to do with calming our bodies… and reaching our souls. I use my illness as a “welcome card”, a card that I used to find my spiritual self. I don’t believe in accidents, it’s all weaving together the way it should!
Thanks for sharing, on here, facebook and on your lovely site! Feel free to share my account if you’d like!
😀 -TGFY
Thanks Guru and Lisa….I was floxed in 2013 and still have issues. It took me a while to rule out other causes and many, many doctor visits including a NYU neurologist…and none of them were able to connect my 4th taking od Cipro as the cause. I am still not well (short term memory, bad taste in mouth, eyes/floaters and chronic neck pain etc. etc.) and would like to know of any help, or
supplements that have helped others. I’m 65 years old and on top of being floxed ….several times…but having the serious breakdown in 2013….which was almost a psychotic breakdown following a month of relentless insomnia…..I had lyme and babesia and hashimoto thyroid in 2000. ANY ADVISE YOU CAN PROVIDE WOULD BE GREAT. ALSO, IS THERE STILL A PUSH TO TAKE THIS MED OFF THE MARKET? I AM NOT ON FACEBOOK AND I’M NOT VERY COMPUTER SAVY….BUT WILL FIND A WAY TO GET INFO RECOMMENDED? THANK YOU
Hi Linn,
Thanks for having the courage to live and share your story.
In regards to your question,
I hope the following video brings you some level of joy… or hope…
http://kstp.com/news/patients-applaud-fda-warnings-popular-antibiotics/4145745/?cat=1
As far as advice, I truly believe in the power of meditation, the power of intention, and surrendering yourself to the flow of it all. Expect miracles.
Epsom salt baths and magnesium glycinate saved me after I was Floxed. I still remember the crippling anxiety, the clicking aching joints, the sore muscles from the mildest of tasks, the back pain I’d never had before (I’m only 26). Unable to sit in my car for more than 5 minutes without piercing pain,The acute symptoms were relieved very shortly after I started taking baths every other day. I eventually switched to a few hundred mg of oral supplements and a weekly bath. It’s been about 17 months now and I’m about 90% back to normal and better each day 🙂 .
Doctors didn’t believe or have much interest in what I was experiencing. I was prescribed benzodiazapines for anxiety and muscle relaxation and told to go on my way. Didn’t take a single one – glad I decided to research my own health and fix the root of the problem. Thanks to the author of this site for letting people know how to treat this problem. I wouldn’t have known without site’s like this.
Hey Mike! Thanks for such a great comment!
You even inspired me: I have my feet soaking in a warm Epsom salt/Lavender bath right now. Since writing this article, I came across a few EDSers who swear by these Epsom salt baths for their mode of magnesium absorption. If I didn’t already put it in the post, I will.
Same here, my doctor’s didn’t seem all that alarmed over my quick dissent into being even more crippled. The doctor who prescribed me the Cipro simply said, “Oh, you must be one of the small percentage of people that have a reaction to it.” He didn’t tell me anything more than to call my other doctors and pharmacies and to have my allergy noted. So yes, let’s thank The Computer God for the internet!
Thanks again for your insight and comment! It’s always good to hear of others finding a way out of that mess.
-TGFY
I just wanted to say thank you for sharing your insight. Last night, I was in the most horrible pain after completing the second full day of Cipro, which I was given for a suspected kidney infection (diagnosed by the ER when I went in for a high fever and couldn’t keep liquids down). Last night, it felt like my gut and insides were being ripped apart (horrible, unbearable pain under my ribs), my back was in agonizing pain, I had a fever, and my neck muscles were very stiff and hurting. I don’t have any known allergies, and I don’t take prescriptions unless I absolutely need to. I decided to not take last night’s Cipro and do some research instead. After reading horror stories from many cipro users, I found your article. I then took an Epsom salt bath and 400 mg of Magnesium (with some pudding so it wouldn’t irritate my stomach), and this morning I am my old self again. No fever, just a few slight but barely noticeable aches, and my stomach is calm. I am usually a really, really healthy and athletic person, but a trip to Mexico a couple weeks ago really messed up my digestive system and made me believe the Dr. when he said I needed anti biotics, specifically cipro. So, thank you for sharing your story. It brought be back from hell last night. I won’t be taking any more cipro!
Oh Penny! So good to hear! Wow, I seriously had to take a moment after reading your comment! I remember those days of being in fear, like, I’m going to be like this for a while?!? So nice to be able to help you across the miles, and across time. Truly.
Hi, Thanks so much for this information. My mom is currently suffering from this and I am trying to find topical magnesium for her. Where does one buy this? CVS does not have it, neither does The Vitamin Shoppe. Please help me out, I need to help my mom. Thanks so much.
And also, how much magnesium is necessary? I found this lotion (link is below) and it has 185 mg per tsp. Is this ok to buy? And about how much should she apply to the affected areas a day in order to feel better?
http://www.magneticclay.com/store/magnesium-lotion-ancient-minerals-8.aspx?__utma=1.1888889066.1453995096.1453995099.1453995099.1&__utmb=1.2.10.1453995099&__utmc=1&__utmx=-&__utmz=1.1453995099.1.1.utmcsr=google|utmccn=(organic)|utmcmd=organic|utmctr=(not%20provided)&__utmv=-&__utmk=84762521
Thank you so much.
Hi Melissa!
I’m so sorry for the delay!
As far as I know, there is a magnesium lotion, and a magnesium gel. The lotion is more expensive, but is easier on the skin, and usually has more nutrients on the ingredients list.
Where to find: the internet (like you did), or an actual health food store.
As far as how much to use, the bottle will say the amount. It is important not to go overboard, as well as it’s important that she does not have any of the kidney issues I mentioned in the post.
I wish well-being to her! Good looking out for mama! Take care of you both!
what probiotic is recommended?
Hi Liz! Sorry for the delay! The thing is is that I have a dairy allergy, so I’m limited partly in what I take. I take Probiotic Acidophilus, but your question has me looking, and thinking that I should broaden my probiotic horizon. I just read that “Lactobacillus rhamnosus GG and/or Saccharomyces boulardii” should be taken when an antibiotic is taken. However, for my sake, I believe than contains dairy. Look around a little and see what you find!
Hi, I’m only 16 years old and I was prescribed cipro for a kidney infection. I took the first 2 cipro pills this past week (stopped taking them because I knew they were hurting me) and I have been experiencing insane panic attacks (most of them due to thinking that I am going to be in pain for the rest of my life due to the pills or thinking that the pain I already feel will get worse), depression, thoughts of suicide, as well as pain in my feet, tingling and pain in my neck that radiates into my arms, weakness and then tightness in my calves, muscle twitching, generally feeling unwell. Reading this article has helped ease my mind and put my thoughts back into perspective. I wanted to know if you are still doing well to this day, and if you still regularly use the magnesium? I am getting a cream and I have already taken a epsom salt bath, but I wanted to know how you are doing now and if you still use the cream? Thank you this means the world to me.
Hi Erin! Sorry for the slight delay! How are you feeling? Any better? To put your mind at ease, I’m feeling much better since I wrote this post. I do have Fibromyalgia, and EDS, so I have the symptoms from those conditions, but as far as what I felt from the Cipro directly, I’m pretty sure I’m clear from that. I truly hope you’re feeling better! 😀 😀 😀
Thank you for replying! I’m doing a lot better mentally, I haven’t had any more anxiety attacks so in that respect I’m doing a lot better, but my tendon problems haven’t gotten much better. I started taking some supplements that have helped other people who were floxed and I’ve noticed some improvement , but I think it’s just going to take some time to heal and get better.
Erin,
That sounds like a BIG improvement already!!!!!
Yes, time heals all wounds. Take care, and have patience in your healing. It might even open a door to something you’re yet to discover about yourself.
I love to do Tie Stretches, with a strap, belt, or old scarf, lying on the floor, strap around the lifted leg. (Other leg can be bent with foot flat on the floor) Slowly pointing and flexing the toes, circling the leg around. Taking it slowly, slowing the breath. Also, slow and gentle neck exercises.
I was working on some GIFs of these exercises to add to this site. I guess I should get on that! 😉
Hi,
My mom was on cypro for 2 days and stopped because of the terrible side effects.. she does have some tendon pain. I do have have some magesium spray. Should she spray it directly on her ankle area?
Thank you.
Hi John!
Sorry to hear about your mom, but I’m happy to hear she stopped so soon!
I’m not really qualified to say how to apply it. I have a creme and a gel. The creme directs:
Choose thin skinned areas like the back of the knees, inner arms, upper chest, ribs and neck. Rotate areas daily. Begin with 1/8 teaspoon, increase to 1/4, working up to 1 tsp.
The inner ankle would be a thin skinned area, but if it were me, I’d rotate, like the directions said.
Good luck to you guys! Good son looking out for her!
Thank you for your quick response. I will have her apply it to thin skinned areas and rotate. . 2 days on Cipro was enough to to clear her infection.. Thank God!! We had the Dr. place an medical alert in her file as being allergic to Cipro..And hopefully will never be giver to her again.
I also had had my mom start on probiotics.. And remove dairy from her diet.
Wish you good health!!
Wow lots of changes: all good!
Keep in touch with how she does if you’d like!
😀
Hi Christine,
Your article gave me hope. I was Floxed about a week ago; 5 days of 2x 500mg of Cipro from a stubborn sinus infection. 2.5 days in I felt a slight stiffness in my neck and decided to wait to call my doctor before taking the next does. He told me to stop, and as the week progressed I began getting pains in my elbow (joints and tendons), knees, ankles, shoulders, and back. Usually not at the same time. I am on my third day of using Magnesium Oil and I feel better here and there. I am hoping I am as luck as you and after a few days of Magnesium treatments I’ll be good as new. I guess only time will tell.
Best Wishes,
Richie Recchione
Hi Richie!
Glad you’re able to find some comfort at this time.
In my experience: healing takes time.
If we’re able to surrender ourselves to the moment, we might find peace, and possibly a silver lining.
When I went though my experiences with Cipro, I would have never guessed I’d be helping someone like you.
Keep looking up. Hope you continue to feel better!
Thanks for sharing your story!
🙂
In 8 months I haven’t improved much at all with my worst symptom being depression.. your very very lucky
Hey Azz,
So sorry to hear this!
I just came across this site… maybe these modalities can help?
https://www.survivingcipro.com/supportive-solutions/three-things-that-worked-for-me/
It dawned on me that I’ve carried a daily yoga practice since 2012. Maybe the gentle movements of yoga helped me. I always like to be on the side of caution, so I can’t say “do yoga,” because in this case we have to be very careful.
I’m learning more about fascia, and how to safely move. Tias Little and his SATYA yoga to be precise. Very gentle, very mindful, very healing.
I know you are suffering,but don’t forget that healing is all about the mindset, so don’t let your thoughts get in the way.
Take some blessings from me as I wish you the best, and know that you can get better! You have to believe that you are healing!
The affirmation: “I am grateful for my healing” helped pull me out of my pain.