*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.
James’s Cipro story–This drug nearly took my life.
I have put off writing this story for some time now, purely to the fact i wanted to be somewhere near myself in my body and my mind to write it.
My story involves different medications and how they had different effects on me, take my advice as you wish but just to say this is MY story not yours, so its not to say it wont happen to you.
June 2nd 2016, it was a normal work day. Just like any day, I’d drive my van to work an hour every day to be there for 7am. I was scheduled to go on holiday the following week to the USA to florida with my girlfriend at the time and friends and family. That morning i noticed a constant nagging in my upper Right teeth. (don’t ask me which one it was i am not a dentist) But i thought to myself, what could be worse than having a horrible nagging toothache during my ten day stay in the states? i was desperate so the following day off to the dentist i went. X rays taken, nothing to find apart from a small crack which wasn’t anything serious. no sign of infection. I explained my situation about going on holiday. The dentists words were, “ To be on the safe side, i would like to prescribe an anti- biotic – metronidazole. it wont hurt you mr pitney, its just to be on the safe side.” I was desperate for some relief from this nagging tooth pain, rest assured at the time i wasn’t to know this single appointment changed my life forever.
So, life went on as usual for the next for days, work was great me and my girlfriend at the time were shopping for holiday clothes we were so excited for our holiday. my toothache persisted but i just put it to the back of my mind. Here is where it got interesting, The 5th day of taking the metronidazole, i had severe lower abdominal pain shooting down towards the right side of my groin and testicle. The pain was excruciating, like nothing id had ever experienced before. i could barely walk, it looked like i had been riding a horse for the last week constantly. needless to say, i thought my testicle had became twisted or something out of the ordinary so off to accident and emergency i went or as you americans like to call it ER. i saw a doctor briefly after around a 5 hour wait, only for him to tell me i had strained myself. I said to him, could these antibiotics cause anything like this? (metronidazole). He replied with, not be absurd mr pitney, you are going to be okay….. he sent me away with some pain killers, and off i went on my holiday.
I never forget the day i went on holiday dragging my case behind me with every ounce of strength i had with severe pain in my abdomen, in the waiting area for the flight basically in tears because of the pain. But i carried on, i wanted to make my girlfriend happy as she had never been to the USA before , and as my family had always been great fans of it.
We landed in Orlando, i had already had it in my mind that i NEEDED to go to the hospital, after a nine hour flight of severe pain and misery. it wasn’t effecting only me, i could see it in my families eyes i was putting them on edge. So we landed, before we had even got to our villa i was driven by my mum and dad to the hospital where i had various tests including an ultra- sound scan which all that was found were some small cysts. Once again i asked if This anti- biotic can cause this, No said the doctor . It just isn’t possible. He prescribed some very strong painkillers but i don’t remember what they were called , needless to say they were strong and got me through the holiday
Even though the pain was awful, i got through the holiday . I had an amazing time, and we flew home back into the normalcy of every day life. i returned to work, and the pain increased. you see i was an engineer back then , on heavy machinery. so taking it “easy” wasn’t in its jurisdiction. I couldn’t handle it, i had to go back to hospital at this time the pain had radiated to my back. It was awful, i was sweating. little did i know it was to get much much worse.
Que the man that could have ruined my life without even knowing it, i wonder what he is doing now ? i wonder if he is still prescribing this pig filth. But anyway, examinations were done, a previous doctor took urine samples and found no infection, for some reason this man did find some evidence of an infection , this i will never know if i even had one. “ Mr pitney, i think you have eppididimitis , we have two choices for you, we can prescribe you some anti – bionics or we can take you into theatre….. tonight. The thought of theatre frightened me to death. I mean , being asleep while somebody slices your testicles open , i could think of anything worse. I was desperate for anything to stop this, for looking for the answer to what was wrong with me. You can imagine what i said, “ yes lets try the antibiotics, they can’t hurt, can they doc (with a cheesy grin) “ of course not mr pitney , not at all. Que the nurse , as i was staying in for more test that night they kept me in over night. Armed with a plastic cup around the width of the size of your two fingers , filled with my prescription, which included ibuprofen, paracetamol and a word i try to avoid using. CIPRO, or CIPROFLOXACIN, personally i like to call it Pig filth but needless to say that was what i had. with a swift flick of the wrist, like i was drinking a shot of whiskey, i took back the cocktail of drugs, and let the tiredness of the night take me.
That morning, i was woken by the nurse taking my observations. I rubbed my eyes, and rubbed them again, i couldn’t see properly. everything was fuzzy, the nurse took my blood pressure, “well mr pitney your blood pressure seems too high so we are going to need to keep an eye on you, here is some more pain relief for you” i sat up in the bed , reached over for a glass of water to sooth the dryness of my mouth, i grabbed the glass with my right hand , i leaned it back over towards me and it spilled everywhere . My grip, had literally disappeared overnight. I mean, can you imagine waking up with effected vision, and heightened grip over night? it scared the living fuck out of me.I got out of bed, right leg first. Collapsed into a giant heap onto the floor. Now I’m 23 years old, What was happening to me ?! i headed down the corridor after being helped up by the nurse, everything was fuzzy, my heart was racing , the pain in my abdomen increased by arround 50 percent, i barely made it to the toilet, i did what i had to, i found blood in my faeces that morning, and not just a little bit. I was scared, and alone i waited hours to see a doctors and explained to him what was happening, he barely even looked at me. That same day i was discharged being pushed in a wheel chair, i remember thinking. “ ok so this morning i collapsed into a giant heap on the floor and they are discharging me? , right now as i sit in this wheelchair , thew whole right side of my body is numb , i can barely walk. I didn’t know at the time that CIPRO was causing this. I didn’t know, NO ONE had any advice to give me , or to believe that this so commonly prescribed antibiotic could cause such catastrophe. I was picked up that day by my mother and girlfriend and taken home with a ten day course of CIPRO. I felt tired, i felt sick i didn’t feel right, my heart was pounding.
I woke early the next morning, i had my morning dose of CIPRO, i can still remember the feeling of it slowly being digested in my stomach, ( not to mention it made me throw up regularly ) around the fourth day of a ten Day course, i had had enough i called the doctor and said , “ YOU NEED TO PUT ME ON ANOTHER ANTIBIOTIC BECAUSE I CAN BARELY WALK. So just like that i stopped the prescription and was put on something much safer, DOXYCYCLINE
So , for around Two weeks after stopping the CIPRO, i had some weird and wonderful symptoms, i thought to myself, if it is the CIPRO, it will go once it is out of my system. WRONG. You see, CIPROFLOXACIN damages you from a cellular level, once the damage is done it is extremely hard to repair, Take someone with cancer for instance, the treatment destroys unhealthy cells , but also healthy cells depending on the humans immune system.
Anyway, here are some of the symptoms i experienced over a 7 month Period. Some are disturbing .
1. headaches
2. dizziness
3. testiclular pain
4. Abdominal pain
5. Joint issues
6. i was being sick for around 3 weeks, i lost over a stone.
7. Serious eye issues, my vision was badly effected ,and i had this bizarre pressure being my eyes like someone was squeezing the life out of them
8. peripheral neuropathy , i had burning sensations, tingling, numbers, speech problems, brain fog, i never forget the second week , i woke up in the middle of the night screaming my head off, it was like someone was injecting ice into my veins, and pushing it through them . By far the most worst pain i have every felt
9. pressure in my chest, irregular heart beat. it felt like someone had inserted an air line into my chest
10. tendon issues, but not as serious as some people, i was still able to keep working .
11. mood issues, aniexty , depression ( ill get to that later ) and low sex drive
12. depersonalisation. My girlfriend at the time asked me who i was many times
13. weight loss , then weight gain. i lost weight due to the CIRPO destroying my gut flora, so i wasn’t able to keep anything down. and weight gain, when i got my gut under control i was in too much pain to do any exercise
14. extreme tiredness.
To most people that would have all those sorts of symptoms , would think autoimmune disease ? fibromyalgia? which the doctors atually suspected. This couldn’t be caused by some pills could it ? i mean . i only took five pills, FIVE FUCKING PILLS>? let that sink in for a minute, the average time to take a pill is around 5 seconds right ? so thats 25 seconds , which cost me 7 MONTHS of my life. Anyway, i did what any normal person would do , i did my research. What i found was horrific, people being permanently disabled, people going fucking blind ? BLIND?! from some fucking pills some piece of shit doctor prescribed because they are too bone idle lazy to do a proper diagnosis, I’m sorry for my language but you can’t imagine how angry i am towards those doctors. “we know best “ PFFFT.
I went to many doctors about this , had scan. Brain and spinal cord. found nothing, i only found one doctor that actually believed me and i am so grateful for him!
So ok, things i did to try and help me to begin with
1. Got connected, it was surprising to see how many other people were effected by this. mostly americans were effected i only found a handful of people effected in the UK. i found advice on floxie hope , a lady named LISA helped me a great deal. So stay connected , dont isolate yourself.
2. I tried supplements , a lot of supplements. MAGNESIUM ,Coenzyme q10, vitamin B, Vitamin C, folic acid, an lots lots more , I’m not sure if they worked, i don’t take any supplements anymore but i took these for around 5 months.
3. I tried lots of diets, but they made me miserable. yes they work for some people, but for me it really messed with my mind, i felt like i HAD to do this to feel better, but it just wasn’t me.
4. Stay positive, you have to, what else can you do ? kill yourself, believe me i tried that and it makes things so much worse. yes this happened to you, but you CAN beat it.
5. stay connected, see your friends, go out, have fun as much fun as you can.
6. try and do exercise, i walked my dogs every day.
7. keep normality! , don’t change major things. Keep going to your job, turn up . DRAG yourself if you have to.
8. Don’t blame everything on CIPRO, god yes. it really fucked you. big time , like seriously, can’t think of anything worse
9. Acupuncture, Mike if you are reading this, you will know that i made it.
10. Keep away from brainiacs, yes they are giving good advice but it was too overwhelming for me. take this take that do this do that don’t do that. BOLLOCKS, do what YOU want, because its worth it. yes, stick to a small schedule of supplementation, but don’t go crazy
11. My pets, i love my dogs more than anything.
12. Music, (head banging music )
13. Knowing that there are people much worse of than you, people are dying out there. i know its hard to believe but things can ALWAYS be worse.
14. don’t give up never give up , what are you ? a pussy? I can handle anything you throw at me
15 my faith in god
The night CIPRO NEARLY GOT ME
It was around late novemeber, My girlfriend had just left me . She said “ i can’t handle this anymore , there is nothing wrong with you , you are fine you are okay i think we need some time apart” That really got me, how could she leave me in such a state , at this point i was seeing some improvements physically, but mentally my head was fucked. I wanted it to end, i felt trapped, like i was drowning and no one was there to pull me up. I attempted to end my own life, i wont get into detail but you have to be in a dark place to attempt what i did, i it wasn’t for my pets i don’t think id be here today. That night i had dream , it was my great grandma. telling me to never give up, that i wasn’t ready to leave and i had more to offer. i woke up in a huge sweat, and i just burst into tears. i had to hide the marks on my neck for a week or so.
Light at the end of the tunnel.
I continued to work, i never gave up, i was demoted into a less Hours role, i was only to do 40 hours a week , for 7 months i did this, until recently i started to feel better, much much better not just in my body but in my head, i am a little overweight now, but i will take that. tomorrow morning i will be starting my old role as an engineer again, this gives me so much confidence and is part of the reason i decided to write my story. You see, I’m just an average joe. I’m clever in what i do, but before CIPRO, i didn’t know anything about my body or health. I wanted to write this story on behalf of the regular every day people, because this is what is happening to them and it shouldn’t it really shouldn’t. My story is a lot different to the others, I’m not very good at english or what not so you will have to bare with me with the bad grammar but needless to say, EVERY STORY MATTERS, no matter how different or similar they are they will get us heard one day.
Persisting symptoms here is a list of things i still deal with on a daily basis, But are getting better every week.
* joint pain, But maybe i get the odd, OUCH maybe once a day. so very minor.
* vision issues , but resolved by glasses. sometimes pain (maybe once a week)
* occasional brain fog, (maybe once a week)
* chronic back ache,( i can feel it getting better as every week goes by)
* Minor testicular ache.( dealing with that very well).
i consider myself to be seriously lucky, don’t get me wrong i haven’t beaten this yet. i hear of people having relapses but fucking bring it on, give it to me. I WILL BEAT YOU OVER AND OVER AGAIN YOU WILL NOT TAKE MY LIFE FROM ME. consider myself right now at around a 89% recovery. which is pretty darn good at 7 months, some people are sick for YEARS, this is unacceptable.
Things i have lost to CIPRO
* My good eyesight. i can still see but have to wear my glasses, some people have retinal desttachment which can cause blindness
* The love of my life (at the time ) i don’t blame her for leaving me , i was a burden, would i have done the same?
* ALOT of money, not including the hours i lost at work, i lost around 5000 pounds, which is around 7000 dollars?
* My amazing job (which i am getting back on monday wa hoooooo)
* one of my dogs passed away while i was flexed. daisy
Things i have learnt from CIPRO
* To be compassionate, take time for myself.
* Lots about the human body and how it works.
* acupuncture makes me jump
* i appreciate my life a lot more
* i am more caring
* i don’t smoke
* i am a lot wiser.
* my family mean EVERYTHING to me
* My kidneys hurt sometimes when i drink ( i try not to drink too much)
* People care, they just have different ways of showing it
* DOCTORS DO NOT KNOW EVERYTHING don’t leave your trust in them, because they might just screw you without knowing it
* NEVER take a floraquinalone again, they are poison to our bodies, i remember an episode years ago i had severe chest pain when i was being treated for an infection in my foot, i checked the medical records. i was prescribed , you guessed it CIPRO!
In conclusion , i have written my story to raise awareness for others . i want to thank everyone for being there for me when i needed you all the most, thats it for me now. Nothing else in my life will go wrong , the crisis is nearly over. And also, don’t give up , you seriously wanna spend the rest of your life droning on about the pain ? because you can beat this , its possible i thought at the time it wasn’t , but it is , its nearly over for me. i might have a relapse but fuck it, its gonna get better i know it. 89 percent in 7 months , not bad. But even if it takes 7 years, keep at it , don’t give up your life is just as much important as your neighbour who runs 7 miles a day. Now days, i do what i want, i go out to eat , i see friends, i go for drinks and socialise. i never say no to new opportunity and never let it pass me by . Because my life is for living, not for loathing. So fuck it, get yourselves better YOU CAN DO THIS !.
Out of darkness comes the light, as i am my saviour in this world of internal light.
** 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 James,
Thank you so much for sharing your story, I’m sorry to hear you have been through so much, but glad to hear you are doing better. My boyfriend is experiencing Cipro toxicity after taking the medication about two months ago. He is doing much better, and has a very positive attitude, but is still experiencing some symptoms and would love to speak to some people who have been through the same experience. Would you be able to speak or message with him? Could I add you on Facebook, so I could connect him with you?
Many thanks and warm wishes,
Amy
Hey James, I too was slapped down by that Pig Vomit Flagyl Big-Time! Went blind in my left eye, suffer relentless severe dissiness and instability all the time, constant brain fog, loss of appetite, lost 26 lbs, very sick and weak… No sex drive, I’m unable to drive, nor work out, or even watch moving objects (like on TV) without feeling sick and dizzy… and that was after only 7 days on 500mg 3x/day! So now I’m on week three after stopping it with little to no change in my symptoms. The doctors have either all run for the hills, or are in complete defensive mode denial because my medical record was clear about my long antibiotic neurotoxicity history naming many of them directly directly. (Flagyl has now made the shit-list) So how long was it before you started feeling a least some relief? Is there any hope?
Hi James,
Can you provide an update on your eye issues? I had Cipro and Flagyl as well. Just awful! Thanks! Glad you hit the 95% mark!
Wow. The ironic thing is, cipro is supposed to be considered as a weak antibiotic. I am on metronidazole (flagyl) right now and the side effects are WORSE than the diarrhea it’s meant to deal with. I am a med student and it baffles me that things like these aren’t listed in our books. This might actually be a blessing in disguise. Years from now, I’ll look back at my months of suffering and be more careful about prescribing antibiotics.
Don’t get me wrong, I still haven’t recovered fully but my symptoms are far less severe than yours so this give me some sort of comfort. I shouldn’t complain if others are suffering worse than me. Thank you for writing this. This is a very dark time for me (haven’t been sick like this since grade school) and you have given me the courage to face these side effects.
By the way, if I recall, the main mechanism of metronidazole’s action is through DNA damage (unlike antibiotics which targets RNA, Or cell walls uniqe to bacteria). As eukaryotes, it could be possible that if we have no infection or minimal infection in the first place, the drug can affect us rather than the bacteria/infectious agent. Hence, the many complaints against metronidazole online. Not sure of cipro works the same (will have to dig up my pharma book in the mean time).
My guess is that you already got cellular damage with metro. Cipro just made it worse.
Hi, Reychop. I am interested to know your insight into DNA damage through metronidazole; I know a lot of people who believe they suffered DNA damage because of this drug. However, fluoroquinolones cause mitochondrial DNA damage completely on their own. This isn’t something Lisa or other floxies need to theorize–it’s been proven through multiple studies and even the FDA admitted it on an drug assessment document in 2013 (and yet they left it off of the official FDA label). They know fluoroquinolones cause systemic DNA damage and all it takes is one pill to trigger these affects. That’s why drugs like Cipro, Levaquin, Avelox and other “floxie” drugs have 5 black box warnings a piece.
I’m actually not a floxie–I suffered a serious adverse reaction to metronidazole in 2015. I’ve never taken a fluoroquinolone, but I’ve researched it a lot to gain better understanding into ADRs in general. The effects of these drugs are deadly and disabling on their own.
Now, back to metronidazole. I am curious to know your theories about this, if you’ve uncovered some medical literature about its DNA effects, because the research into metronidazole is quite limited. That being said, I know, as do many in our support group, that metronidazole is a serious neurotoxin. Again, we don’t need to guess–the medical literature is out there. The drug causes lesions to the back of the brain. These are mainly on the cerebellum, but can also affect the basal ganglia and brain stem. In fact the brain stem is the second-most hit region after the cerebellum. Also, the nerves can get damaged (peripheral neuropathy). Most metronidazole victims complain about:
*Altered mental state. Usually horrible, constant panic attacks, loss of emotional control, depression, crying spells, lowering of stress threshold, extreme insomnia, derealization, depersonalization.
* Motor control issues. Usually gait disturbance (ataxia), dysarthria, hand tremors, leg twitches, (rarely) nystagmus. Seizures can happen but they are quite rare for this.
* Peripheral neuropathy. Sometimes only in hands/feet–sometimes everywhere.
* Autonomic dysfunction. This is one medical literature is missing badly. This include dysphagia, respiratory issues, digestion issues (complete loss of appetite is a very common issue, where you take two bites of something and can’t eat anymore), heart rate/blood pressure issues, salivation issues (many people now have a white tongue/mouth due to salivation dysfunction), heat/cold intolerance, loss of equilibrium. Some of are people with the worst cases have been diagnosed with autonomic dysfunction.
* Neck pain, light/sound sensitivity, headaches and/or head pressure (usually at the back of the head but sometimes all over the head), severe brain fog, extreme weakness and fatigue.
The symptoms are usually worse in the mornings and slowly improve as the day continues.
Any of these sound familiar? It’s due to brain damage; there are case studies, systematic reviews and a warning on the FDA label (although the warning is grossly simplistic) that no one bothers to look at even when patients present with symptoms.
I am sorry you’re going through this–I truly am. It’s a nightmare I wouldn’t wish on anyone. Most people do recover from metronidazole toxicity–about 65%. Others improve (about 29%–I’m in this group). About 3% is unknown and the remaining 3% have permanent cognitive impairment.
I am hoping you make a full recovery–that is the most common result. And yes, I’m certain this will make you a better doctor. In fact, it has the opportunity to make you a great one because you now know this problem firsthand.
If you want to learn more about metronidazole, I do have a blog at:
http://www.metrogirlblog.wordepress.com. It’s a little outdated (no mention of ANS issues, that’s something that’s become more apparent in the last several months), but still some good information and links. And let me know about the information you have about metronidazole DNA damage–there are some people in our support group who are leaning towards this theory, and I’m sure they’d love to learn.
Thanks,
Erin
I am 2 years past a horrible experience with Cipro and Flagyl (acute diverticulitis). IV in hospital then 10 day oral. By day 5 I could not walk, could not feel my legs, could not even keep down water, and vertigo was off the charts. Went back to the ER and the doctor decided it wasn’t the meds, I must’ve had a stroke. Had an MRI which (of course) came back clear. Had 5 bags of fluids which re-hydrated me and (I think) flushed some of the meds out of my system.
It has taken 2 years to get most of the feeling back in my legs – for months I would try to run (I used to run marathons) but kept falling. I still have patches of numbness in my legs and back. I feel like my fine motor skills are gone – things like threading a needle are all but impossible. It has been absolute hell coming back, and I despair of ever being 100% again.
I hope you continue to improve.
It’s been 8 months since I was poisoned and although I’m physically better my head is as fucked as ever, the last 8 months have been the hardest of my life I couldn’t even be happy on my wedding anniversary last week..I hope my time will come soon for a dramatic improvement.
I’ve been dealing with the results of Cipro then Flagyl for the last 3 months. I took 500mg Cipro twice daily for 5 days then a week later took 500mg Flagyl 3 times daily for 10 days. Experienced joint pain, muscle pain, twitching, felt like my hands were almost asleep for several weeks. As time went on (after I was finished with the drugs) I experienced more and more muscle pain and then 2 months after finishing on the same day I started having tendon pain in both Achilles Tendons. This was after taking advil two nights in a row because of testicular pain. I had tinnitus start after finishing the Cipro and while on Flagyl. I also have significant pain in the backs of my thighs. Quite strange really. This website has blessed me beyond measure. Hearing of successful recovery from people who suffered considerably more than I am. Also the affirmation that all of these strange things I felt and had no answers for are real and all linked to the drugs. I’ve also had heart problems that appeared soon after taking Cipro. I’m wearing a heart monitor for the second time to record the issues. My heart rate is quite low now and I have chest pain regularly. It’s a real joy. These pharma companies are real evil.
Dear James, Please consider sending your story to CBS 60 Minutes. 60m@cbs.news.com
OUR STORIES NEED TO BE HEARD, Dan
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