*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.
The Prescription
I took a 6 week course of Cipro 1000mg once/day in early 2015 to treat prostatitis.
First Signs of trouble
The first signs of anything unusual were a low B12 level about four weeks in.
A few weeks later, while on vacation, I started to notice unusual bruising near my joints, in the elbows and ankles after engaging in sports.
I also started to notice pain in my ankles, near where the achilles tendon wraps under the heel. It felt as if the tendon was tearing away.
Further complications
Symptoms began to worsen on my return to work. My ankles would ache if I had to stand for any length of time.
Navigating stairs became difficult because of pain in my Achilles tendons. I used to be able to hike all day, mountain bike and surf all day, but now I could hardly walk around the block.
Walking on hard floors caused stabbing pains in my heels.
My eyes started to give me problems, especially when transitioning from bright light to a darker interior.
A bit later I discovered that one of my front teeth was loose.
We had a very harsh winter this year, and I was extremely sensitive to the cold. It felt as if I could never warm up. I was so cold on the subway, I started to have to wear the warmest boots I could find and my toes would still turn white.
I also had ‘brain fog’ and difficulty thinking (and my job is very analytical, so I started having difficulty getting through my workday.)
Forums scared me to death
I went online and started reading the forums and after that I became very anxious about what I had done to myself.
This information also made me hyper vigilant about every little change in my body.
All of these symptoms I was experiencing were very stressful, and also after reading the forums, I now worried about all the other symptoms I might get.
I started to be very anxious. Every new symptom or worsening of an existing symptom caused pangs of anxiety that were difficult to control.
Doctor’s Responses
My own doctor is wonderful and felt very badly that the medication she prescribed caused this terrible reaction. The only problem was she didn’t know much about fluoroquinolone toxicity or how to treat it.
A urologist I consulted had heard about the reaction but only advised me not to worry, and that summer was around the corner and things would get better.
Treatment Programme
I mainly followed the programme in the The ‘Fluoroquinolone Toxicity Solution’ (affiliate link)(https://floxiehope.com/2014/11/25/the-fluoroquinolone-toxicity-solution-ebook/).
I also started seeing a naturopathic doctor who suggested taking contrast showers to help my body better deal with the cold, and who helped me consolidate all of the supplements I was taking into a more balanced and more manageable number of pills.
First signs of recovery
I felt that things started to improve about 10 weeks into my recovery.
I started to have good days.
The tendon problems in my upper body were the first symptom that substantially improved, then my Achilles tendon on the right went back almost to normal, my left Achilles was not symptom free, but started to improve.
Around this time, I quit my job which was a long commute by subway after a friend offered me a job where I could work from home.
I found a nature trail near my home and I started to ride my mountain bike on it gently, this improved my mood and also seemed to help my joints and tendons recover. On days where I didn’t exercise, everything seemed to tighten up and become more painful.
My List of supplements
Epsom salt baths, Mg Glycinante/ Mg Threonate
COQ10
Vitamin E
A good multivitamin (Ortho Core: http://www.aor.ca/products-page/advanced/ortho-core/)
My message to you
This is the part I’m excited to tell you about.
All the text above is just for context, and honestly if you are on this forum, the story will perhaps seem very familiar already.
What I really want to tell you is that despite what has happened, some of the happiest days of my life have been during this difficult recovery.
It is possible to be be in pain and be happy at the same time, it is possible to be uncertain about the future and be happy at the same time, it is possible to be scared and be happy at the same time.
I have been practicing meditation for about 10 years before this happened. Maybe that’s has something to do with my outlook. If you haven’t started already, it’s not too late to start now. (https://floxiehope.com/2015/05/15/meditation-and-mindfulness-to-get-through-fq-toxicity/) Don’t worry, meditation is a secular practice that anyone can try.
I aslo noticed that during some of my most difficult days, when I just couldn’t take it anymore, I got what I call little signs.
One of those signs was this little flower graffiti I kept seeing on the subway. Sometimes the sign would be a song in a passing car. And one time a usually elusive squirrel in the woods behind the office seemed lead me on a chase through the woods, chattering at me to follow it like a playful child.
I am a very rational thinker and am skeptical of new age Woo, but these experiences made me question those certainties.
My grandmother, who was the strongest person I ever knew, always told us that if it was possible after her death to come and visit us that she would. I never saw a sign of her after she passed away, or did I?
Thoughts and advice
-Don’t call yourself a ‘Floxie’. This happened to you, but don’t make an identity out of it, you are much much larger, more beautiful, stronger and more magnificent than that.
-Drop every onerous or stressful thing in your life that you can. This is your year. Tell everyone you love that you are concentrating on you this year, and that you need their help. Those that love you will understand. Bonus: you will learn who really loves you!
-Trust in your ability to recover.
-Don’t over-think. My rule: thoughts should inform action. If thoughts are leading you in circles and are not helping you decide what action to take right now, drop them.
-Stay away from most internet forums. Follow a good plan, like the ‘The Fluoroquinolone Toxicity Solution Ebook‘ (affiliate link) and stick to it. If you have online discussions about FQ toxicity, keep them focused on problems and specific solutions. Don’t seek commiseration and other psychological support.
-Find an affordable source of joy. For me it has been Hawaiian Reggae music (https://www.youtube.com/watch?v=LGl_d4QWors), for you it may be something else. Find something that brings out your joy and drink it in.
-Stay as active as you can. Find an enjoyable physical activity you can tolerate. For me this was swimming and cycling, both of which are not too hard on the joints. By trial and error, find out how much exercise you can tolerate. I found that no exercise was worse than a bit too much exercise. You need to get the blood flowing to promote healing.
-You will get better. Give yourself a year. You won’t believe the difference 10-12 weeks will make even. What doesn’t get better after a year, you can live with!
-Let go of anger and resentment: those are truly toxic.
Conclusion
I believe that Cipro has and the adverse reaction I had to it has given me a great gift.
My life after Cipro and my life before Cipro really aren’t that different. Cipro just brought it into sharper view.
It reminded me that life is precious fleeting and fragile, and that every day, good or bad, is a gift.
I am now determined to not waste a single day more being angry, not to miss one more opportunity to hug my wife and tell her that I love her, not to waste one more sunny day preoccupied about nonsense.
May you all be happy and well!
On 2/29/16 I got the following message from Daniel:
I took a monthlong trip to Victoria BC to avoid a big chunk of the winter.
I walked all over, sometimes all day, and climbed a small mountain.
Here are some pictures from that trip:
The park across the street from where I was staying was all in bloom.
Mt. Douglas Park, where I climbed the first ‘mountain’ since my FQ reaction.
A chalk mural by the beach seemed to speak directly to me.
Another chalk mural by the beach seemed to speak directly to me.
** 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.
Reposted here for the record.
—
I wanted to post that I’ve had some success alleviating some lingering symptoms by making sure I got all my essential amino acids.
It’s been shown that FQs directly damage the collagen matrix, but I believe they also interfere with healing by disrupting intestinal flora, leading to malabsorption of many vitamins, minerals and amino acids.
In my case I definitely had malabsorption which was causing me to be low on several amino acids. It can be subtle, I never noticed anything particularly wrong till I supplemented with amino acids, and saw improvements in some areas.
If you have low stomach acid or GERD/heartburn, you may not be absorbing your nutrients well either.
The nice thing about this is that taking amino acids directly does not require digestion. So it can benefit you even if your stomach or gut is not yet perfect.
• L-Argine/L-Ornithine (Now Sports formulation): Since I started taking this I have noticed my feet have a much healthier color to them. Not that they were purple before, but there must have been some mild circulation problems. These amino acids are known to dilate blood vessels, so do not take if you have low blood pressure.
• Glutamine: Excellent for healing the gut. Before, if I poked myself in the abdomen it felt sore. This went away after 2 weeks on Glutamine.
• L-Histidine: good if you have low stomach acid, but read the side effects on that one cause it can worsen some conditions.
• “Freeminos” by True Hope: this formulation includes all 23 essential amino acids and all branch chain ones as well. This is a broad spectrum one that covers all the bases, but in a lower dose than a single supplement, obviously.
• N-Acetylglucosamine (Ultimate Glucosamine): Not an amino acid but also helps heal your gut and connective tissues. This form is very efficiently absorbed, unlike most other formulations.
A song, as requested by Nicole Reeedy
It’s a song about leaving the islands. The Hawaiian lyrics speak of an island man and his love for Hawaii. One particular line is interesting, translating roughly as when an island child leaves, he becomes stillborn.
Justin Young – One foot on sand
https://www.youtube.com/watch?v=Jw1Q12NX0a8
I’m still doing my pull-ups and working my way up to a 1 arm pull-up. I used to be able to do 2, aiming for that again.
Also here’s a happy song. I love the bridge at around 2:28.
https://www.youtube.com/watch?v=zw8EJ1kLroY
This one, also by Bo Napoleon is also beautiful. The speech at the beginning are the final words of Bob Marley to his fans.
https://www.youtube.com/watch?v=8zBM8PwA9NY
Another tune about Home.
https://www.youtube.com/watch?v=4_-noVr9wr8
Hi Daniel,
Thank you for the beautiful song!
I have been thinking about you all morning as I reread your recovery story to pull myself back together last night.
Six weeks ago I thought I was heading for recovery then boom! It seems I am so much worse today than the beginning?!
My tendons were feeling stronger & I guess I did try & push it too much. Then the neuropathy body burning started until I was screaming at times! LOL Now my tendons are worse than before, have gone through hives & well….this is just crazy.
I got my shoulder ultrasound back ( my 1st tendon ) to hurt and it has a full thickness tear. My worst pain is in my feet so if my shoulder is torn what about my feet?!
I know at 65 I can have things go wrong anyway but so afraid of being in a wheelchair.
I know you talk about the anger being toxic but when your life is turned upside down & you feel you have lost everything normal it is just hard to forgive & get on with it. But you have to trust in faith & do it anyway!
So I have regrouped in my brain & just getting back to just taking my supplements, meditating & getting my IV’s. Need to listen to music more!!!!
Hope you are doing great!
Not the best summer weather wise here! My son just got back from a Microsoft conference
in Toronto and said you guys are hot & humid!
Have a great day!!! (:
Nicole
PS. Really love One Foot on Sand!
Good-Morning Daniel,
Thank you so much for your email.
I put a lot the into mind damage theory. I actually know quite a bit about this & probably not in a good way.
Even though, I have been given many divine signs to show me how to let it go and everything will be okay. In all those cases when I did let the situation leave my mind the problem did disappear! I was always given another situation in place of the one I was worrying about in order to let go of the one that moved out of my life. I have never been able to do this on my own but I really should be a master at it because of the signs I have had over and over. I would like to share some of these stories with you when I figure out how to skype!
Kerri from our Fluoroquinolone book had suggested a book called “You Are the Placebo”.
I am finding it very interesting and if you have not read it I think you would as well. The theory is something I have always believed in but have used it in the negative instead of the positive my whole life. There were things in my childhood that feed this fear & negativity in my life. Maybe I have come to this place to finally LET IT GO!
I certainly am not saying my symptoms are in my head. I know I have at least one torn tendon & when the neuropathy symptoms started I was in shock & had not read or remembered anyone’s story of burning so could not have been put in my head. I am saying that maybe we do hold on to things a bit out of fear.
The thing with this dilemma we are is it has so many more unknowns than what is known. We have a supplement regiment we see working so the we hit it running! None of these things can hurt us ( except in the pocket book ) so worth doing for sure. I know I mentally feel stronger but my body did not agree.
Can just what we drink or eat cause rebounds, who knows for sure. I have talked to a few people who did not have the fear of everything or got over it and saw no difference. I have been afraid of just about everything including so afraid of the fact I may have to take a antibiotic again or just about anything that will set me off that I have probably done it with stress alone!
I would say my severe rebound was probably just detoxing because I was doing so much & maybe over did it before my body was ready. Or maybe it was just going to happen anyway!
I do believe if we can become strong enough to truly let it go, it will. Just such a hard thing to do when every pain or feeling you get takes your brain to that dark Cipro place! LOL
Funny you mentioned interstitial cystitis. I suffer from this and know I have probably been treated for UTI,s I did not even have because of it.
Last night I had the same pain I had when I had my diverticulitis attack & chose to just lay in bed even if I died instead of going to the hospital. Would have never felt that way before.
Always trusted the ER was the place to go in a emergency. It’s terrible to think you would rather die?! Fear is a awful powerful & terrible thing!!!!
Anyway I hope you enjoy Tofino!!!
I was suppose to go to Whistler in August for a family thing but not going to push myself now.
I love to spend Thanksgiving there so will somehow do it if I have to sit on a bench the whole time! LOL
Have a great weekend!!!
Nicole
Just wondering if you are from Northern BC Canada like I am?
Just wanted to let you guys know. I’m about 18 months out and I went and rode some real mountain bike trails for the first time since Cipro.
The trails were fairly challenging, especially the climbs which are full of roots and rocks.
I found I still had the same finesse I always had on the trails (sorry to boast, but it’s true 🙂 ) and was pleasantly surprised at my stamina.
Also every time there was a fork in the trail that said “Easy” one way and “Hard” the other I took “Hard” and still nearly “cleaned” the whole trail, only putting my foot down once.
I rode for amout 30 min, which I consider good for a first time.
So it was a good day.
For all of you floxed people who used to be into sports, there is hope that you can get back to the activities you love.
“For all of you floxed people who used to be into sports, there is hope that you can get back to the activities you love.”
I’m so so glad to hear this, it’s been almost three months since I took cipro and started to experience problems with my achilles tendons. Until a couple of weeks ago I was doing really well, virtually pain free and back to walking normally. I was beginning to think that I’d maybe got away with being only mildly ‘floxed’ and was well on my way to recovery, I was even contemplating returning to ballet class and maybe even snowboarding in the autumn. Then out of nowhere, last weekend I seem to have developed what I think may be plantar fasciitis, which has taken me all the way back to square one with regards pain and being able to walk, which has also made me lose faith in ever recovering from this 🙁 Will I begin to recover only to develop another problem or is it normal to have periods of recovery followed by relapses or the development of new problems?
I’m so disappointed as it looks like plantar fasciitis is really hard to recover from and can become a permanent deformity in the tendon. I really hope that someday I’ll be well enough to get back to the sports I used to love. I was determined to recover from this initially, but feel less sure now. Sorry for being so negative, I know it’s important to try and keep a positive attitude when dealing with this.
Congrats on your ride Daniel! What a great feeling that must have been!
I have a room for you & your wife when you are ready for those North
Vancouver trails!!!!
????
Wow, some of those trails look pretty hard-core!! It’s so good to hear that you’re able to bike again, even if you’re not up to the harder trails yet 🙂
The cyclical nature of recovering from cipro toxicity is really difficult to deal with, it feels like two steps forward and one step back, but I know I need to take encouragement from any small improvements. Would you suggest resting a tendon when it’s swollen and painful, or should I continue to try and stay mobile?
Is there any reason why recovery is so cyclical? Does the cipro stay in the body for months, years, or maybe even the rest of our lives? Is it stored somewhere? Maybe in the fat cells, or is it that the cipro has mutated the DNA within the cells of collegen and bone, so when the cells of these tissues are replaced they are already damaged? It’s very unclear as to what the actual damaging mechanism of cipro is.
Anyway, I’ll try to stay hopeful and keep reading your positive posts which are very inspiring 🙂
Thanks for the supplement tips, I’ll look into the Biosil, I’m currently taking Great Lakes collegen powder or chicken bone broth, not sure if they help, but they can’t hurt.
When you cycle through symptoms, have you ever found that initially it’s one tendon that is affected, then next time it may be another? I think the fact that I was having achilles swelling and pain and now it’s the posterior tibial (did a bit of googling and this seems to be the most likely culprit) has me a little worried.
I have a doctors appointment next week to have this tendon looked at, I don’t think she’ll be able to advise me to do much more that RICE it, but apparently damage to this tendon can cause a fallen arch and eventually foot deformity and permanent difficulties with walking, so I just want to make sure there’s nothing else I can do to help heal (sometimes a cast is advised for this sort of tendon problem).
I’m just really hoping that this is just a down cycle in my recovery and I’ll bounce back from it eventually. I’m staying positive and believing it’s just another part of my healing.
Getting ready for a surfing trip to Tofino in September.
So excited.
https://vimeo.com/99942047
Hey Daniel,
I understood what you meant & know that is so true!
I had been letting a fear from a return of my diverticulitis pain put me in a dark place for worry of going down the antibotic trail again! My WBC is fine so far so no infection so like you & your scare of your illness returning I am hoping it just heals itself, but if not I am not going to live in fear because I know there will be times we all have to face having to take a drug again or even have a surgery. Time to let that part go!
My new burning symptom is getting much better & has been around 6 weeks so you are right on about the time we kind of get through things.
Had a good talk with my doc about my shoulder tear and he told me that my tendon would not be healthy enough for surgery & shoulder surgery often makes things worse anyway. Since I have full range of motion to not worry about it. He did check my feet again and knows most of my tendons are in pain but just like the rest of you he tells me to give it time. He actually knows a lot about FQ’s from his time working in the States. He told me that many mistakes were made with me in the ER but most Canadian doctors do not know the dangers of these drugs at all & what was done to me was just without knowledge! Still mad about it but it’s done so need to move on.
I know we all will have fall back days but you are right there are at least go forward days!
My brain has really cleared a lot but my body has not caught up, darn it!!! LOL
Wishing you a great weekend!
Sunny & nice here on the west coast! (: August is looking good weather wise for you!
Hugs,
Nicole
Just read your post on the day after your ride & know in my heart you are ready to give it a little more. Let the FQ Daniel go & ride the trails & the waves! (:
Hi Daniel, it’s a great story and even greater that you have recovered. I was given cipro in Jan this year for prostatitis. I took it for 1 month but I’ve had chronic fatigue and gritty eyes since then and wondered what’s wrong with me? I started cycling again and felt better doing longer and more intense rides as the weeks progressed. That was until the past 2 weeks when I took ibroprufen following a hip Arthorgram (where they inject contrast dye). Since then I’ve started with burning hands and feet, crawling tingling feelings in my lower legs and tendinopathy throughout my body. I’ve also recently been getting dizzy and having cognitive problems at work. I’ve just got some Epsom Salts and ordered some magnesium to help me heal, but
I also take vitamin D, probiotic, turmeric and omega 3 tablets. What’s the thing that made the biggest difference to you? I’m off to see a natural doctor in September hoping she will help me recovery. Thanks Martin
I discovered a link between vitamin D and my tendon pain. I started taking vitamin D even in summer, and even despite my levels being within range on the lab tests.
It could be a coincidence but my tendons are 100% clear right now.
It may be due to calcium ending up in the tissues, so that when you take vitamin D it puts them in your bones where it belongs.
My joints are holding up fine. I’ve even started cross training for surfing on a carver skateboard, which puts enormous strain on the knees and lower legs.
A video of the Carver surf style skateboard in action. They turn like a surfboard!
https://vimeo.com/100158160
That is great Daniel! How much D a day are you taking & how much calcium?
So when are you & your surf board heading out?!
Thanks Daniel, I have been taking the D3 but not any calcium because I thought it absorbed the mag. up. I will get some & add a bit more mag.