*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 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.
Hey everyone.
I think this is going to be my last message for a while.
After 18 months, all my Cipro induced symptoms are gone.
All my remaining symptoms actually are caused by slight hypothyroidism that my medical records show I have had for years. It looks like both my doctor and myself missed that one.
It has been great getting to know you guys on this site, and I wish you a speedy recovery.
I am headed to Tofino in september to surf. I am also starting to train to get back on the North Shore trails in BC.
I am also starting a new job in september, which I am excited about.
I’ll leave you guys with two funny stories.
My brother spontaneously ruptured his achilles tendon just a few weeks ago. He never took Cipro or any FQs in his life. My friend who is my age has been complaining about his achilles tendon, saying it felt too short and that it gets inflamed. He has never taken Cipro in his life either.
My brother my friend and myself are all getting older, and these anecdotes taught me that you can’t blame everything on Cipro.
I wish you all health and happiness. You will get better. When you have a good day write it down on the calendar. Then when you have a bad day tell yourself you can get back to feeling like that.
I will respond to direct messages to this page, but I can’t promise anymore updates since I don’t want to think in terms of floxing anymore.
I also have plans to spend a year in Hawaii!
https://www.youtube.com/watch?v=xazMGvTBJPI
Ok couldn’t resist.
In Canada we have a beloved band called the Tragically Hip. Sometimes they are referred to as Canada’s house band.
The lead singer Gord Downie was diagnosed with terminal brain cancer at the age of fifty two.
They had planned a tour for their latest album before the diagnosis. Bravely they decided to go on tour anyway.
This is expected to be goodbye.
The last show of the tour on August 20 was watched live by millions of Canadians. Our prime minister was at the show.
Here is the last song from the last encore.
Life is short people.
I try not to waste a single moment being angry and thank god for each and every single day of my stupid little life! Maybe that could work for you too.
https://www.youtube.com/watch?v=hZS9iUOqHOA
(Sorry for the sound quality, it’s not great, but I believe it captures the moment.)
This was the most exciting update I have seen!!!! If I could jump up & down I would!!!
I have a prayer I say for all the people who have been hurt on here every morning & at bedtime but always name you & Ruth. Ruth is also starting a new job & just had a wonderful post on her facebook page playing in the surf. You two have made me so happy!!!!
I had been on your page because I just had the worst setback with new symptoms at 6 months now & thought I had remembered the same happening to you. There is was and gave me back my hope as you always have with a song!
Must tell you though that my son went into a walk in clinic last week & the Dr. gave him a scrip for cipro & he told her he would not take it because of the effect it had on me. She ask what that was and he told her about my tendons & nerve burning and she said she had never heard of anything like that! Gave him another scrip & he had taking it for two days before he clued in it was just another FQ, levaquin!!!! Of course he googled and saw all of the USA warnings & called me yelling about what is wrong with these Canadian doctors!!! I told him to start some mag. right away & the next morning I sent him a text that I was going to my NP for my myers, mag. & glut. IV & would have her give him one if he would like one. I was sure he would just blow me off but he got right over there & did it! She gave him some supplements and told him why he should not take any Advil which he takes a lot.
I did try to get him to stay off of the bike trails for a few weeks but did not work. Will just pray he does not get hit, that’s all I can do.
You are so right about the fact we can not blame everything on FQ”S. I had problems before & will continue to as things happen. My daughter in law has a shoulder tendon rupture & did not even know it until a MRI and like me is just letting it go. No FQ’s there as well. So there you go!!!
I do believe we at least should have more understanding about FQ”S in Canada & even though I do not want to live the rest of my life in Floxiville I will do everything I can to get to the doctors & druggists here when my health is better. I just can not live with letting people get hurt because the education is just not out there or believed!
My home is still open to you when you are ready to hit the northshore trails.
I just can’t tell you again how happy you have made me today.
Hawaii dreaming my young friend!!!
Courage was seen in watching the Tragically Hip! Went to Earl’s and watched in the bar.
It was my first trip to a restaurant in 6 months! They have antibiotic free meat now. LOL
Thank you for everything you have done for so many people on Floxie Hope!
Hugs to you always,
Nicole
So nice to hear how well things are going for you, good luck with your new job and your time in Hawaii, you’ve been such an inspiration ????
Hey Daniel,
I hope you have a great time on Vancouver Island. When you pass the Cypress exit on the way to the Ferry you will see 3 highrise condos on your right that look just alike, I will be in the 1st one watching for you!!!
Thank you for thinking about us oldies!
I had figured you were in your early 40’s, that was when my body started changing as well! ????????????
It is very hard to fight all of these setbacks, the pain & craziness of this toxicity when you are older for sure. I just sometimes feel I am so weak I am just going to die! ???????????? But on the other hand we just want to go for a walk, do our own shopping, clean our home & play with our grandchildren.
Do not have to get back to the place you young ones do. I have no plans to mountain bike or surf!!! Thank goodness! So we just have to get back to making it through a normal day.
I know you have had depression over this, how could you or any of us not?!
But you have found the happiness in the moment which has been your secret!
I have thought so much lately about the most wonderful thing that has come out of this & it has been the wonderful & caring people I have met on Floxie Hope & Kerri’s site. Everyone cares & try’s so hard to help each other!!! Wouldn’t it be wonderful if the whole world could be like Floxies?!
So anyway let us hear about your trip out here in beautiful BC my friend!
Hugs,
Nicole
So happy you had a great time on the Island! ????????????????
I am even happier with your non Floxie life now! Time for a new wetsuit!!!
I expect to see you on the north shore trails on your next trip out! ????????????????♀️????
I am thinking positive thoughts of you everyday.
Enjoy the new job & update us every once in a while. ????
That is great, Daniel!
I have another friend like myself who has had low weight so there is hope!!! Maybe not for the muscle for me though! LOL
Daniel L,
Thank you for letting us follow you in your recovery story. Hearing that your tendons have gotten stronger over time is very encouraging to all of us who are struggling with that symptom. I recently ordered a 6 day pack of Elixa based on your recommendation. Just curious, did you only take it for 6 days, or did you continue taking it longer than that?
Wonderful to see you doing well, Daniel.
I keep you always in my prayers.
And thank you so much for the kitty tonight. I really needed it!!!!!
I hope you are enjoying the new job.
See you on the north shore next year!
Nicole
Another update, though I’ve said I wouldn’t. 🙂
I’m doing well at my new job, working with very very smart people. It’s humbling to be there actually. We have seminars on Fridays where we cover the whiteboard with equations.
I was very lucky that this job landed in my lap just when I needed it, and the previous job where I got to work from home while I recovered, landed in my lap just when I needed it.
Isn’t that funny?
At difficult times, I often encounter a red squirrel. It’s becoming odd, I call it my power animal.
Look for those things in your own lives. Be open to it. It may sound silly, but I’m becoming convinced. You can be the kind of person that works with equations, and believes in power animals.
I’ve been surfing in BC and in the lake nearer to my home. The waves don’t break that often in the lake, but I’ll take what I can. I can skateboard, do pullups, I bike to and from work every day in all kinds of weather. I’m packing on muscle.
One thing I’d like to point out is to look for signs of adrenal fatigue, and treat it if you can. (https://adrenalfatigue.org/adrenal-fatigue-questionnaire/)
It was a big part of my problem.
I’ve found I needed a tiny dose of Thyroid meds, which I now believe I will be able to go off of eventually (because weak adrenals put pressure on the thyroid.)
I have found Pregnenolone to be of great help in resolving my adrenal fatigue. Be careful with this stuff though, it is a hormone so take tiny doses. It’s probably best to work with a practitioner with this one.
It helped me a lot. I was so fatigued just a month before taking that job, it was like a leap of faith that if I landed the job that I could actually do it. Success was not assured. I had to believe that I could go from needing naps at 11:00 and 2:00pm every day to being able to keep up with geniuses, and I somehow pulled it off.
I am overflowing with gratitude for that.
I wish you all the best.
A mellow one and a rowdy one:
https://www.youtube.com/watch?v=9GO8CMZzjkA
https://www.youtube.com/watch?v=vUFE5V1rqAA
And two more:
J Boog covers Junior Murvin, not sure which version is better!
https://www.youtube.com/watch?v=YjQxfHvsPZQ
and an oldie
https://www.youtube.com/watch?v=99sPvjG6YM8
Featuring Ernie Cruz who died recently, body surfing. Life is short, make the best of it!
http://www.hawaiinewsnow.com/story/33144302/popular-hawaii-musician-ernie-cruz-jr-guitarist-for-kaau-crater-boys-dies
Also, from the only Rock’ ‘N Roll band that matters, the Clash.
https://www.youtube.com/watch?v=1k35map1ikA
Ava Root – A kava Ceremony I believe?
https://www.youtube.com/watch?v=JT6BXIKfjmg
Hello Daniel,
I think about you all the time & keep you in my daily prayers.
I hope the work is still going well & you are getting stronger everyday.
A very happy Holiday to you & your wife.
Peace & Love,
Nicole
It doesn’t get any darker than this.
Literally, for those of us in the northern hemisphere, these are the darkest days of the year, but from here on it gets a bit brighter every day.
Maybe this is a metaphor we can live by. Accept the cycles, but also know, that when things seem like they can’t get any darker, often the recovery is just around the corner.
I wish you all a wonderful holiday season, and a full recovery.
I pray many Floxies see this, Daniel.
So well said, hope & faith is so important to healing!
To just around the corner! (:
Thank You!
Great advice! Glad you made such s great recovery!
BTW, if any of you like the music posted here, you can stream good tunes from here:
http://native925.com/ (Click on ‘Listen Live’ Button at the top of the page.
It’s available in the US and Canada.
https://www.youtube.com/watch?v=iCHs9Ilpu-E
It’s been two years on the 18th of February.
Honestly I forgot, till someone reminded me.
I’m still putting on muscle like no tomorrow, rock climbing, riding to work 20km per day.
Headed to Hawaii soon to do some surfing.
Wishing you all a quick recovery.