*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.
Thanks Daniel! I totally agree about the shift in my thinking since taking Cipro, for whatever reason it was a real eye-opener for me. It actually changed my life for the better, even though it doesn’t feel that way everyday. I meditate on a daily basis and I look forward to the day where I can separate this pain from my self-perception and self worth. It takes a lot of practice. I strongly believe that getting out and moving no matter how disabled I felt really helped with my recovery. It started with walking one city block and building from there. It helped my brain and my thinking. I hope you continue on your road to health and happiness.
😉
Daniel, Thank you for sharing your amazing story! I’m glad you are not only recovering but have learned to live fully. I learned it as well. Good to know the ebook helped you. God bless you!
Daniel, thank you so much for your story. I especially loved “don’t call yourself a Floxie”.
I often wonder what my recovery would be like if I hadn’t read all the scary things on internet and “just” had the symptoms without also having the sheer terror of what I have read.
I don’t know how far out you are now, but I’ll be very curious to see if you stay this way! Best wishes!
Here’s an update.
It’s kind of funny but literally days after posting this story I had a major setback.
In mid July I experienced some periods of major stress. Shortly after this, the infection that started all this six months before began to flare up again.
At about this time, I also let a naturopath convince me to change my supplements.
In mid August, tendon pain worsened everywhere, and in some previously unaffected areas as well! My eyesight suffered as well, my left eye just wasn’t ‘right’ and I developed floaters. I am a computer programmer and this made my job very difficult.
I was very discouraged for a while. You could say that he positive attitude in my recovery story was severely tested!
I also had a surf vacation planned to beautiful Tofino (http://www.tofino.ca/) about a month later that I felt would be a total wash.
But somehow over the next few weeks my system fought off the infection itself. I also managed to overcome the tendon and eye problems. I just had to get my supplements back in order and rest a bit more.
Here’s what I’ve learned:
-I won’t let anyone change my supplements again. The bare essentials for me appear to be: 600g of Mg, 400IU of Vitamin E, lots of Vitamin C, lots of Vitamin K for my teeth. (The new changed regimen only contained one tenth this amount of Vitamin E, which may have contributed to the relapse.)
-Even major setbacks can turn around fairly quickly. In about one month, I went from having difficulty walking all over again, to surfing a 6 foot wave in the Pacific.
Throughout all this I kept this quote running through my head:
“The problem isn’t really solved until it doesn’t matter if the problem comes back.”
In some ways I’m glad the setback happened (not that I want another), because it taught me that it’s not sufficient to just fix the problem, I also have to fix my resistance to having the problem.
I will consider myself recovered, when some day I have another setback and I can calmly laugh it off and say “Here we go again…” and get on with my life.
If you have a setback, trust in your ability to recover. If you recovered once, you can do it again, and this time you’ll be doing it with all the knowledge you now have. It will go faster every time.
My last post had a song and this one does too:
SOJA: Easier
https://www.youtube.com/watch?v=9skoBjBVqeU
Lyrics:
It’s in the summer breeze, it’s in the winter blows
It’s in the innocent, it’s in the criminals
…
I believe the thing you are looking for is right in front of your eyes. It’s in the most nutritious food you eat, it’s in the purest water you drink, it’s in your supplements, but it’s also in Cipro and in your ripped upped tendons and in your frayed nerves. It’s in your fear and in your hope.
You will come out of this so much stronger: like gold is purified in a red hot crucible.
Notes:
– I’m unsure of the source for the quote, but it could be from Pema Chodron.
– I found Astaxanthin to be of great help for my eye problems.
– I have since tried MitoQ and feel that I have more energy. I used to conk out at 3:00pm and need a nap, now I have trouble falling asleep at my usual bedtime and want to go to bed later.
how are you now
good stuff mate I had the vision thing as well like I just couldn’t focus properly and covered one eye for a while! …
Here’s another song of hope.
Columbia is notorious for kidnappings, with kidnapping victims often being held for as long as 12 years.
The Columbian military teamed up with some famous musicians to create this song, with the following message in morse code embedded in it:
“19 people rescued. You are next. Don’t lose hope.”
Because many of the kidnapped victims were military, it was hoped that they could decode the message secretly embedded within the song.
They then went on to play the song on the radio for months, reaching 3 million people.
Here is the song, if you listen closely you can hear the morse code in the chorus:
https://www.youtube.com/watch?v=7CqOYM7cCX8
the song actually drops a hint: “Escucha este mensaje hermano” (“Listen to this message, brother.”) just before the morse code.
More on the making of the song:
https://www.youtube.com/watch?v=2xTYQcugD1c
The song kind of reminds me of this site. I don’t know what the exact number of recovered floxies is, but if you’re reading this remember:
“Many floxies rescued, you are next. Don’t lose hope!”
Daniel,
During at point of your recovery have you felt your achilles/knee not being painful but just a general weakness? I’ve been experiencing that and it’s hard to stand for long periods of time. Has me feeling pretty down and hopeless 🙁
Discomfort in both my achilles and knee. Not so much throbbing pain but it definitely feels not right. Hard to explain. Feeling my achilles I can definitely tell it has degenerated a bit compared to my right one. I think over time the collagen will just have to build back up. I think the problem is it’s still building bad collagen because my body is still under the toxcicity of cipro. I’m starting to do the specific massage/frozen water battle/stretching routine several times daily hoping it stimulates blood flow to my cells.
Happy music for the end of your week:
The band “Sudden Rush” celebrates the late great Israel Kamakawiwo’Ole
https://www.youtube.com/watch?v=8_e-hfczXI4
Here’s another one:
Anuhea “Shoulders”
https://www.youtube.com/watch?v=iRK83hhi4yY
Based on this inspirational story:
http://espn.go.com/video/clip?id=9456327
Hi everyone,
Hope you are all well, or at least getting steadily better.
Lately I’ve been looking back over my 10 months since Cipro, and even before that and a few pieces of my health puzzle have fallen into place.
Basically, I think I may have had SIBO, or at the very least a very bad gut, even prior to taking Cipro for prostatitis.
Because, my earliest symptoms post flox were musculo-skeletal, the familiar tendon issues, I overlooked the gut issues I was having.
Sure, I took some probiotcs, early on and things did improve with my gut, but I don’t think I took my gut seriously enough, early enough.
I would urge you, even if you think you are fine, heal your gut right away, to avoid other problems later on down the line, like auto-immune diseases and other nasty outcomes.
Lately I found a supplement that really, really helped with my gut issues, and that is colostrum.
There are several brands, right now I’m taking AOR brand because it was available at the health food store.
Colostrum boosts the immune system and helps heal the intestinal tract.
Here’s some info on colostrum:
http://www.rewildthyself.com/colostrum-natures-cure-for-leaky-gut/
I also found this probiotic that isn’t widely known. It is made by researchers working on the human microbiome project. This formulation contains 115 bacterial strains which they have identified as present in healthy people.
http://www.generalbiotics.com/
I also take a probiotic called Elixa. It is a more conventional probiotic, containing 9 lactobacillus strains, but it is very well encapsulated to deliver the beneficial bacteria to your gut.
I don’t take Elixa as indicated, (10 pills at a time!) but take 1 or two capsules per day. This probiotic will make your skin softer. I suspect that is because it helps in collagen synthesis, which will be great for your tendons.
http://www.elixa-probiotic.com/
While I had been taking these two great probiotics for months, when I added the colostrum the benefits really started to become apparent.
I no longer have brain fog and other symptoms of leaky gut.
I would recommend taking all three at a time to heal your gut right away.
I don’t want to sound alarmist, but even if you don’t have a lot of gut symptoms, you may have damage from the FQs that may catch up with you down the road.
Wishing you all a speedy recovery, and a Merry Christmas.
Daniel,
Colostrum seems very beneficial as it is also a precursor for glutathione. I’m going to start on it now! Do you take it on an empty stomach?
I wanted to mention a supplement I hadn’t heard of, BioSil, which claims to help you better generate collagen.
http://biosilonyourgame.com/
My mother used a related formulation to help with her nails, and it had a dramatic effect. Could this help us floxies with our joints?
NOTE: I have not tried it yet, so this is not an endorsement. I will try it soon and report back my results.
Watching Late Show host James Corden having fun with Stevie Wonder just made my day.
One thing I’ve noticed as I get older is that I enjoy watching someone else have fun as much having fun myself.
How lucky is this guy to have Stevie Wonder call his girlfriend and sing: “I just called to say, James Loves you…” Totally awesome.
I may not be having such a good day today, for floxed related reasons, but the fact that these two did makes me just as happy. Maybe you will enjoy it too.
https://www.youtube.com/watch?v=qqrvm2XDvpQ
See also: https://web.cs.dal.ca/~johnston/poetry/island.html
Hello my name is Richard and I live in England. I took Cipro for just over two weeks in January. Need some advice as I am very distressed. Can someone reply if possible and I will go into more detail. Thanks in advance.
Hi Daniel, thank you very much for the quick reply. I will take you up on the offer at some point. I think I need to be relaxed enough to do so, but I will let you know when that might be. I also have Asperger syndrome and so really I am not someone very able to cope with this sort of thing. I will try and put together some details of my situation soon.
Hi Daniel are you on Skype at all.