This story has been a long time coming. It was over three years ago that I became the victim of Cipro, and my healing has taken a long time. I didn’t want to tell my story until I was what I considered healed.
I’m a 39 year old husband and father of two. I’m also a Toronto wedding photographer, and was one of the top in Toronto before becoming floxed. If anyone’s interested, you can see what I do here: www.jamiesondean.com. If you do check it out, you’ll notice a period where I wasn’t very active from 2014 until just this year…
Back in February of 2012 I had developed prostate inflammation directly following a vasectomy. The urologist who performed the procedure gave me Cipro. During a visit to my family doctor a few days later for some strange new pains, I was taken off of Cipro and put of a different antibiotic for the prostatitis. I didn’t think much of it, and moved-on with my life. A year and a half later, 2014 I was dealing with the return of a stubborn bout of prostatitis. I saw a specialist who put me back on Cipro; 500mg, twice a day for two weeks. I didn’t realize at the time, but this prescription was about to change my life.
I was about four days into the prescription when I noticed that I was having a hard time seeing. I was seeing blurry, slightly doubled vision with the sudden development of an overwhelming amount of eye floaters in both eyes. I barely had time to come to terms with this before what called the great three day headache from hell hit me.
This was not a normal headache. As someone who has dealt with migraines most of my life, something was wrong and I knew it. It felt like my brain was being boiled in battery acid. I took Advil, and more Advil, to no affect (and later realizing that was possibly as big a mistake as taking the Cipro in the first place).
At the end of three days with this unfathomable headache, I was left with the feeling that I was damaged. The back of my head was numb and I felt like I was wearing a hat at all times. I was extremely dizzy. I could barely see though blurred vision and heavy floaters. I had a loud never ending ringing in my left ear… I felt like I was in a bubble, with a new layer in-between me and reality.
I went to the ER, and after a 7 hour wait was told that everything is fine. I went to my doctor and was told that I will be okay in a week. Unfortunately, not only would I not recover in a week, but the worst was still to come. A dark, heavy blanket of persisting, extreme fatigue would make soldering-on with life and work impossible.
In the months following, I developed the following symptoms:
-Persistent dizziness/vertigo
-Blurry vision with lots of eye floaters
-Ringing in my ears
-Extreme fatigue
-Depersonalization/ derealization
-Deep aching in both legs, especially the backs of my ankles
-Aching ribs
-Insomnia
-Anxiety and depression (though possibly the consequence of the other plethora of symptoms)
-Thryroid cysts
-Memory loss/inability to think clearly
-Weight loss
By May of 2014 I was down to 138lbs. I am 6’1, and was 160lbs before being poisoned. I had new symptoms showing up every week. I was being sent from one specialist to the next, and the next. Doctors, Neurologists, Thyroid Specialists, Opthamologists, Infectious Disease Specialists, and eventually Phycologists. None would admit that Cipro could cause what I was experiencing, and therefore, I really got nowhere with any of them. The only common recommendation between them was that I take antidepressants, which I refused.
I spent the next two and a half years of my life trying various diets, supplements, avoidances, and lifestyle changes. I experienced symptoms cycling, waxing and waning. I saw improvements and relapses. I gained hope, lost hope, and gained it again, over and over. I pressed on though, and feel like I’m finally at a place where I know what has helped, what hasn’t, and what I can expect. I’d like to share these things here, as I know that reading about what others experienced and did to improve was monumental in my own process. Sometimes even just reading the stories of others and knowing that I wasn’t alone was more help than anything.
What didn’t help
We all know that no doctor was able to help in any way. Against what many here have had luck with, I didn’t find that any supplements or medications helped me in any regard.
I also found that chasing diagnosis led to needless stress and frustration. Thinking that it could be something identifiable and treatable, or that maybe the doctors are correct, and that it was not the Cipro but rather something else was just a wild goose chase. They ran tests for Thyroid function, testosterone levels, anaemia, lyme disease, MS, diabetes, and anything else that could make sense. My doctor believed that I have a “non-specific auto immune disease”.
I tried seeing a naturopath who immediately “diagnosed” me with Candida and put me on a ridiculous diet. I gave it the benefit of the doubt, but after sticking to it for a very long six weeks, I felt much worse. She decided it couldn’t be Candida if six weeks on this extremely strict diet had no positive impact.
What did help
Now for the good stuff! My first big breakthough came from quitting coffee. Although I was dealing with extreme fatigue, coffee just fuelled anxiety and put unneeded stress on my nervous system. I switched from coffee to green tea, which is loaded with antioxidants and the difference was instant. At first I felt even more fatigued, but this allowed me to truly rest, and calm down.
Meditation was another help. Just learning to recenter myself and breathe.
A HUGE jump in my recovery came after watching Dr Terry Wahls Ted Talk on Minding Your Mitochondria. This made so much sense to me; getting vitamins from food instead of supplements. I learned that produce consumes its own nutrients after being pick and transported, so I decided to build a garden and grow my own. I did my own research into what the brain and body need, and created a super-food smoothie that gave me every vitamin, mineral and nutrient that I could need without any supplements in pill form. I did take Greens+, as I just can’t ignore the amount of antioxidants that is provides and the independent studies that have concluded it’s effectiveness. Taking fresh fruits and vegetables from the garden and making smoothies everyday, I saw more stable returns in my recovery. Here’s the smoothie I have had almost every day for the past 10 months: banana, kale, mixed berries, greens+, coconut oil, avocado oil, orange juice, chia seeds.
Finally, I kept the fake it ’till you make it attitude. I noticed that when I sat around, feeling my symptoms, I would feed them. If I was out shooting a wedding, I would at times forget about my symptoms for short periods. You know how you can sometimes have a cut and won’t know it until you see it? Sometime’s you have to just forget about the issues and distract yourself by fully engaging in activities. Doing this brought hope. I knew that even if I didn’t feel 100%, I could at least fake it. I could work. I could still provide for my family.
Exercise and exertion, as well as ample rest vs too much rest, are a bit of a game you play with your recovery. In the beginning, it was rest that I needed more than anything. Any exercise would basically have me blacked-out on the floor. After the first year, I learned that exertion will cause a negative cycle, but with plenty of rest I would get back to positive cycles. It’s a fact that flouroquinolones damage your mitochondrial DNA. This destroys your energy levels, making exercise very difficult. The catch is that in order to repair our mitochondrial DNA, we need mitochondrial biogenesis, and one of the best ways to stimulate this is through exercise.
What has healed, and what hasn’t
At this point, over three years after taking Cipro, I tell people that I’m 99% recovered. That 1% that I still deal with is the fact that I do still experience mild cycles if I neglect my good habits and let negative habits trickle in. I was able to drink alcohol again after a couple of years. This was something that I approached with caution, as it could set me back on a negative cycle. Eventually, I embraced the cycles. They are shorter and less intense each time. Cycles are a part of the recovery, and although they can be disappointing, it’s important not to be discouraged.
My vision still suffers, which really sucks as a photographer. I still have lots of annoying eye floaters, but my double vision has improved somewhat.
I still get dizzy from time to time, but it’s not like it was at it’s worst. At it’s worst, I couldn’t drive, as it felt like I was on a roller coaster in the middle of a stormy sea. Nowadays it’s more like the feeing that I just spun around three times and can manage.
Chatting with Lisa a couple of times really pulled me out of a dark place. I don’t know how I would have gotten through this without this site. This is why I feel like I owe it to this site to share my story. I know it’s difficult. I know it’s not fair. You did nothing wrong, and you don’t deserve this. I sometimes felt guilty that I couldn’t function, or that I should have known better. That’s rubbish. You were the victim, and unless you were taking flouroquinolones for a life-threatening infection, this should never have happened to you.
** 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.
Hi Jamieson. So happy to hear you are better. Thank you for sharing! I am two and a half years out from Cipro damage. Still can’t exercise like I used to. Tendon damage. But I hold out hope as it does get better at a snail’s pace. Peace.
Thank you — I needed to hear this.
Your reflections resonate with me. It truly is the mitochondria where almost all of the symptoms emanate from. But, it is also in the tenocytes and collagen as well Rolling over in bed 2 weeks ago, I tore ligaments that hold my carpal bones together, much like when tendons tore and ligaments simultaneously detached 3 years ago, causing my left leg to break in 3 places. We move on, trying to not focus on the symptoms as they can burn a highway of pain hell directly to the brain if we do. Just left seeing my PCP who still cannot believe all of this, including vision loss, is related to FQs. All he admits to is that it is not normal. Walking onwards as usual, albeit with mindfulness, as therein lies my healing.
Dear Jamieson …your story has given me a glimmer of hope. My cipro journey began 2/2/2017…12 hours after taking the first dosage of cipro. Doctors will not admit cipro harmed me. The pain is excruciating, but I am able to deal with it now better than day 1, though some days it kicks me hard and no amount of meditation or breathing exercises helps. I am a shell of my former self in body movement ability. I am a bit overweight….and that part is not changing. I sort of laugh at that as I realize that those FAT CELLS are holding on for dear life!!!! It is such a shame that all info I have gathered has been from my own research….down to which blood test I wAnted done. Just getting a doctor to agree I needed blood work was a joke. I have little energy, so I choose to use it in research (not my field) to possibly discover something to help all floxed benefit. I am my own health Advocate…no longer buying into what a doctor tells me as I see they are basically prostitute to the pimp drug manufactures. I am also pursing better ways to make our voices heard. I’m exhausted all the time, but I feel I must do this. Thank you for your inspirational story. God bless us all
Very good write-up and advice. Felt like I was reading my own account of events. The symptoms and point of impact are pretty much the same for everybody on this website. That’s neither a coincidence nor a rare event.
I agree with you 100% about the benefits of green tea. It really helps with this. I also drink Gold Cup Chai which contains Turmeric. Highly recommend it for the inflammation, which as you know, can be brutal at times.
Appreciate the advice on the smoothie. If you don’t mind me asking, how much of each do you place into your smoothie?
I’m also in Toronto. I’ve seen others on here as well.
Lukasz, for the smoothie I never really measured specific amounts, but rather played with the formula until I found what I felt right with. It varies and I’ve added and subtracted things, but the main point stays the same; to get the nutrients, vitamins, and compounds that the body needs from food as a starting point, each and every day. It’s not a miracle cure, but it certainly has been beneficial.
Thanks, I’ll give it a go.
Hi Jamieson,
I’m curious to know if you stopped taking the prescription after four days, or took it for the whole two weeks.
Hi Kerry, I managed to swallow one full week of the prescription from hell. I can’t imagine what the full two weeks would have done to me…
“prescription from hell” – very well put
Thank you for sharing your inspiring story, Jamieson. I have also been floxed 2 months ago. Really terrifying symptoms first, but fortunately some of them subsided and I hope for the best in the future.
Eye floaters have been bugging me a lot too. I did find some useful information on this website and did try the beets which kinda helped. I am very curious about the castor oil or flax seed oil. Many have reported improvements using them as eye drops. Will have a try soon.
Here is the link: https://www.earthclinic.com/cures/eye-floaters.html
Hey Greg can you call Newly floxed 909.993.6133
Lots of similarities with my experience Jamieson, and I am at about 2 1/2 years out. I will say though that supplements and especially IV therapy helped me tremendously. I am surprised you are ok with green tea. I had to give that up not only because of the caffeine but because it is high in fluoride. When I was able to have some caffeine again I did add in a cup of coffee every morning (starting a few months ago,) and was also happy to add back in a glass of wine some nights! I too have had a lot of eye issues. THe floaters at some points were so bad it was like looking through gauze and I had so many of those little black specks (another kind of floater) that it was like looking at an ant hill. I also suffered blurred vision, a terrifying “light show” and now have been told I have early AMD. Really pisses me off because I have always taken such good care of my eyes. I also have extreme light sensitivity and was worried I would never be able to act again. However, I stood under some stage lights a week ago and it was ok. Yea! Apparently it is just sunlight and fluorescent light that is disturbing. I will tell you one thing that helped some with the floaters were NAC drops. I used them four times a day for a year, so a huge hassle (about $25/month) but it did cut down on the floaters.
My diet is like Wahls “light” (There is no way I could even store the amounts of veges she eats every day) and I have a smoothie almost every day that is practically identical to yours! I wish us both continued improvement….
It’s amazing how similar our stories can be. I’m sorry to hear about the AMD; macular degeneration scares the hell out of me as it would literally kill my career. I didn’t tell about it in my contribution here, but I was and still am specifically affected by florescent lighting. Stepping foot into a Walmart or gymnasium is like walking into the twilight zone. I instantly become a space cadet.
Congrats on your recover Jamieson! Was wondering if you have had any leg tightness and swollen ankles, am a year and a half in now after taking cipro. Many symptoms have resolved and slowed down. The most bothering one now is the tightness in my legs I can’t stand or walk a lot.
Leg tightness, yes definitely. I felt like a sudden senior citizen. I didn’t notice much swelling, but my range of motion in my ankles became limited, and I felt -as I described it- fragile.
“sudden senior citizen” – again, perfectly described
Thankyou Jamieson for giving us your story. You will help many many people by doing this. You have given the gift of hope as well as practical advice. I wish you continued healing and all others also.
You say you are 99 percent normal but still describe a lot of symptoms? Can you clarify? Also when did things start to turn around for you? Was it gradual or all of a sudden?
To me, 99% means that I’ve recovered enough that this no longer hold me back from doing anything in my life. I no longer have to make provisions to accommodate for this. I no longer have to turn down work because of fatigue. I can say yes to any invitations. I can create like I did before. I can travel without needing to rest. I no longer identify as an “ill person”. This no longer stands in my way of doing anything.
The only reason that it’s 99% though, and not 100%, is because there are some residual issues. Annoyances at this point. Eye floaters. mild dizziness. Slight ringing in my ear. I can live with these annoyances, but since they still exist, I can’t tell everyone that I’m 100% recovered. All of my recovery was gradual and cyclic.
A nice description of how you are almost fully recovered. Thanks.
I just heard about being floxed about 6 months ago. I started studying and realized that is exactly what I was going through. I am four years out from Levaquin and about a year out from Cipro. My MD did not tell me it was in the same family of antibiotics. Last night I read about fluoroguinolenes and knew I found my answer for the horror I have been walking (limping) through the last four years. I have had 23 sets of steroid injections in my spine (bulging discs in lower back), broke my upper back, suffer from intense neuropathy in my legs. I have floaters in my eyes and see a specialist. Every joint in my body aches everyday. The worst part is I have a daughter with Down Syndrome to take care of and sometimes can’t get out of bed.
Thanks for writing out your story and what you did to treat it. My husband doesn’t believe me. Even though next week i am going to have both knees x rayed for a fall. I am so glad I found this group.
Kathy
So sorry Kathleen. First, you MUST avoid all steroids (and NSAIDS). They exacerbate flq toxicity. Please seek out options such as prolozone injections and prolotherapy which help the tissues regenerate and heal naturally. I had, among my 30 or so side effects, torn meniscus. I have since had prolozone injections in both knees. (It takes about 6 months to see improvement.) I am about 9 months from the injections and so far so good!
I had horrible floaters. So bad at times that I would see dozens of black “dots” and the larger floaters were so big and numerous it was like trying to look through gauze. I still have some but am much better. I did NAC drops four times a day for a year.
DONT TAKE ANYMORE STEROIDS! I’m sure that could be why your problem is ongoing. I too made the huge mistake of taking iboneurofen due to constant headaches and only later found out this is a terrible contradiction. I wish my doc or at least the pharmacist told me this vital information.
Thank you for your story. I am also a photographer and I am having a hard time even picking up my camera. I wear hand braces when shooting. But mostly I feel too sick to even try. I was floxed four months ago with two levaquin pills.
I’m so glad you are 99% better. I look forward to the day I can say that.
Thanks Jamieson for sharing. I agree with you in regard to relying on food for nutrients. For the first 2 years after being floxed I stayed on the SAD and took more than 40 different supplements a day. I didn’t start to see improvement until I went gluten free, NO oil/sugar low fat 100% plant based with daily green smoothies.
Hi Jamieson, did you eat organic meat only? I see many floxies also recover from eating organic.
Hi Jamieson,
Do you need to wear any corrective lenses after this experience? My vision issues mirror yours exactly. I had to get prism glasses for the double vision issues two months ago. I have a whole host of other vision-related difficulties. I had LASIK prior to getting floxed so I am really upset that my 20/20 vision is gone. I have a lot of eye floaters and visual “noise” in my vision a year post-Cipro. I had it all though- tendon pain, dry eyes, light sensitivity, these are slowly improving, but not great yet. I have 4th cranial nerve palsy from this and my right eye does not work right. I can see out of it, but my eyes are misaligned and they do not work with my brain right now. The prism glasses help and are what allow me to continue to function. When you get a minute, if you could report back re: your vision-related experiences, that would be helpful to me. Thanks!
How can I talk to Lisa?
Tap on ‘Contact’ at the top of the page and you can e mail her
I’m convinced that like you the fact I took NSAIDs at the same time I was being poisoned with cipro made me alot worse, I have all of your symptoms plus hallucinations and pain all over especially in the legs. After 5 months I’m still the same but I can see I may heal but it will probably take 3 years as well. The only reason I took it was for a sinus infection and of course my GP denies any responsibility with a stupid look on his face. What a mistake but I do have hope and if others can heal I can too.
Wow, that sounds so much like my own story. I would say I’m 80% recovered. Still battling fatigue and ear ringing. I am going to try your shake. 🙂
Those of you wondering how to treat symptoms of prostatitis should try bell ezee flo tea. It has helped me immensely. No need for antibiotics that did nothing to help anymore. It is truly a miracle herb.