*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.
Hi friends,
I am a 32 years old man who was poisoned 2 years ago and now everything is alright, so today I want to share my story with you.
I can tell it has been a terrible experience and for those who are in the middle of it, I understand you so much. Hard experience, right? Probably the hardest in your life so far, but hey don’t worry, you will get through it. I did go through it and I am just a normal person. If I did it, everyone can.
On the 20th of December 2013, I was (wrongly) diagnosed with chronic prostatitis, although no bacteria was even searched, just based on an echo-doppler showing “inflammation.” I would figure out later that my problems were only the result of fatigue and stress. It finally went away just by practicing yoga and relaxation techniques.
I was prescribed a fluoroquinolone antibiotic called TAVANIC, and the pharmacy gave me its generic, LEVOFLOXACINE, 500 mg / day for 6 weeks + a strong NSAID to be taken together, “so it gets better deeply into the body” (!!) Well at least that very last thing worked very well, thank you, doc.
On the 10th day, 30th of December, my whole body just exploded by the inside. Nothing was going right anymore. I immediately stopped the treatment.
Most spectacular things were :
- I couldn’t stand on my legs anymore, they were just feeling incredibly weak and couldn’t even carry me out of bed the first 2 days. Then I remember trying to walk outside my apartment, and the pain behind my knees and in my achilles was so intense that I had to take breaks every 20 meters and couldn’t go more than a block away.
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I experienced cracking noises in EVERY joint of my body, happening with every little movement I would try to do. Fingers, wrists, elbows, shoulders, neck, ribs, hips, knees, feet. EVERYWHERE. That was impressive.
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I experienced the same sensation behind the eyes, as if when i moved them i could hear some cartilage cracking behind. Scaring.
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I had big skin rashes on my face and chest.
And the longer list: tinnitus, painful teeth, vision troubles, headaches, nervous pain through my whole body, and maybe the worst: extreme sadness–it was very difficult to go through it and not fall into a depressive state, as if my brain was controlled by something else.
It has been 2 years now and things came back in order progressively. Today I can tell I am 100% healed, and in a way I am even healthier than i was before, since it taught me a lot about how to eat properly and how to listen to my body. I can even confess something: if it had to be done again, I would do it all the same. And believe me, it has been terrible. Still 6 months ago I wouldn’t have thought I could say that one day. No regrets.
Well, here are the things that – i believe – helped me going through this journey.
- stay away from all the internet information. They are depressing and your brain is in such a state that it would only focus on bad news articles. By the end I avoided EVERYTHING (forums, FB pages, scientific articles…) except recovery stories on floxie hope. Those were the real starting point of my mental work. I have read each story at least 10 times, just like if i needed to convince myself that it was really possible. Because tight now, your brain is not in its normal state. Its clarity was lowered by the effects of this chemistry. Go over it and start thinking positive.
Other exception : Willow’s video on youtube somehow gave me hope too :
- Think about it: people complain a lot on the internet. When they are in the middle of being floxed, they tell the world “please help, my body is falling apart, i am going to die soon.” And once they heal, they just forget to tell the world “thank you all, this is behind me, that is possible.” And I understand them. When people manage to win this big battle, they don’t want to think about it again. I am sure there are hundreds of them who are cured but never tell anyone. Thousands of people are touched and only 50 recovery stories so far? Come on, please don’t think the internet shows a representative and reliable proportion of it. Most of them recovered but jost forgot to come and tell us. Read the story 10 times and that will make 500. Read them 100 times and that will make 5000.
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Food is important. I am not going to repeat all the information already available here or on other pages. But in a general way, with my (new) homeopath doctor, we set up a kind of acid-alkaline diet, in order to lower as much as possible the inflamation in my body and help digestion. You can easily find pH charts on the internet. My diet was mostly :
GOOD FOOD:
Organic fruits and vegetables, ALL OF THEM, ALL THE TIME
Ocean wild fish (the river ones are full of antibiotics)
Rice, nuts, berries, a little piece of meat when i am 100% sure of its origin, same with eggs
I am a cheese lover so i kept it in my diet, just replacing cow-cheese by goat and sheep cheese which are easier to digest.
Broccoli and cabbage have amazing properties.
BAD FOOD: meat, bread, wheat, coffee, beer, sugar, milk… depending on each one’s sensibility
I keep eating like this today and i feel great, I really feel like I’m helping my body. Well of course now I’m doing good so i’m less restrictive, I love wine too much to leave it out my kitchen 😀
- I didn’t really take any supplement on long-term. I shortly tried a bit of magnesium, vitamins, antioxydants, cod liver oïl and digestive enzymes. I think they didn’t help me and preferred to let my body do the job naturally, without overloading with extra things. Exception with probiotics, they can help.
To me, there is no magic pill. Just like there was no magic pill when I was told my magic pill of the day was a fluoroquinolone. So at some point I just cut off every supplement and just trust my body, trying to helping him with a good diet. Obviously it found all vitamins needed in the fruits and vegetables i ate…
- I massaged myself a lot, especially legs and arms. At the worst points, 2 times a day. It was helping a lot with pain-relief.
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Transdermal magnesium was very efficient. There are expensive “magnesium oils” on the market, but you can make it yourself very cheap, buying magnesium chloride in powder and mix it with water. Massage your pained zones with it. At the beginning it can feel a bit uncomfortable but we get used to it. I was generally having a shower 1 hour later, when it was starting to scratch too much. In the same kind of tips, epsom salt baths for the feet. I mixed it with relaxing essential oils sometimes.
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Force yourself to do things. Even if you have only a little bit of strenght to go for a very little walk, get up, get dressed, and go for it.I always felt much better after a walk than after 2 days doing nothing at home. And days after days, the short walks become bigger and bigger.
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Mentally, don’t compare yourself to yesterday or last week. It is not a constant recovery. Some days it goes down. This scale of reference is too short. Be patient and compare yourself to 2-3 months ago. There you will see improvement and start to put your brain on a positive road. Be tolerant with your body, it is an incredible machine and is already working on your recovery. Time is your best friend.
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Reading and writing down sentences that can be related to your own experience. If you don’t know what to read, I recommend starting with Hemingway’s The Old Man and The Sea. That one inspired me a lot about patience and resistance.
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Love is good. First, my mum faced that situation like a hero. Then my girlfriend did. Before that, I was facing people’s incomprehension about what was happening to me. Doctors, friends, even some family, would not understand me. I was quite fine with that, I mean, after all, how could they understand? I forgave them. This was my journey, not their. But having someone around with real empathy and without judgement, is useful. Someone who accepts to understand you without any scientific understanding of the situation. Loving her and being loved were precious.
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Keep doing an activity you like. My passion is flying in paragliders. I forced myself to keep doing this every single day my body would allow me to. And I can assure that some days, it was very hard to. But the mental side was motivated for one thing, somehow the body gave enough energy. If you wish, you can have a look at some short videos I made, it might give you hope, here are the youtube links. I swear i made them post-floxing 🙂 :
August 2014, 8 months post-flox :
October 2014, 10 months post-flox :
July 2015, 18 months post-flox :
And same week broadcasted by my friend :
Some of those days, I only had energy to take off and land. Happily, once Im flying, that activity doesn’t require too much and i was just going to land when tired.
I think it is important to act as before. Don’t put yourself in another category. You are the one you were before, just temporarily experiencing a hard life test, which will eventually make you a better person.
To tell you about how much I feel better now, here are a few things I achieved lately :
- a 3 months road trip in a van across Europe, visiting, hiking, flying and volunteering in organic farms
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just back from a trip to Mexico, which i did without big difficulties, which was quite challenging since i had to adapt to food very different from my floxie diet.
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hiking a lot in the mountains where i live, now i can easily walk for 5-6 hours, 900 – 1000 meters, carrying backpack etc…
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dancing, partying
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doing renewing works in my apartment
All right, one last thing, please don’t ask too much about my recovery details, like schedule, techniques etc.. I think i will not answer. We are all different and it is not useful to compare to others. I wrote my story for you my friends, that is the most I can do for now and I’ve put in it all the useful things I found.
Guys, I am sure you will find your own way. Trust yourself and when it will be done, come tell us you succeeded!
Cheers!
** 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.
Are you French Romain? If so perhaps you could visit the website atoute.org where one of the forums is for floxies. I have been exchanging emails with a recently floxed person who posts under the name of Jean (I live in France and speak French) and I am sure he would be very encouraged by your story but I am not sure whether he reads English that well. He is a very sporty person and is depressed by the huge damper being floxed has put on his physical abilities. Thank you for your hopeful story.
Good stuff, man. Seven months down. Slowly getting better.
I´m very happy for you Romain, that you were able to heal so quickly (2 years seems quite short to me, compared to many of us). I understand your point about staying off the internet forums as they can bring you down, and can be depressing, however it would have been nice to meet you when you came to Haute Savoie last summer – I live in Annecy 🙂 I still haven´t got around to paragliding, as my knees and ankles are still rather problematic and I´m afraid that landing would be dangerous for me, but at least I am now able to do some hiking in the area, and biking on the paths around the lake, and of course swimming all summer long. I do love watching the paragliders hover above la Tournette and Roc du Chèr – perhaps I saw you when you were flying here last summer 🙂
I initially had the same cracking sensation and noise in my chest when I would breathe in and out and when I would try to describe it to doctors they would listen to my chest and say well your lungs sound clear so there is nothing there. I would say it’s not a normal bronchitis, phlegm cracking it’s something else and they thought I was crazy. Some of the symptoms are so weird and random people never believed me. It’s very comforting to read that someone else had this same thing. Thank you for sharing your story.
Ravi pour toi Romain!
Des fois je pense que c’est seulement les «floxies» qui peuvent comprendre ce que ça représente.
Je reviens justement d’une de mes premières randonnées dans les montagnes depuis un an.
Je crois que tu as raison qu’il faut se pousser, et ne pas perdre vue de qui nous sommes.
Moi ça fait environ un an depuis mon «empoisonnement».
Avant je faisais du VTT dans les montagnes, sur les célèbres pistes du «North Shore» à Vancouver, des pistes vraiment extrêmes.
Je n’étais pas certain si je pourrais en refaire après le Cipro, mais maintenant je vois que je vais y arriver.
Il y a aussi le surf en Martinique. Ça aussi je vais y arriver, c’est prévu pour février 2017.
Je me crois plus fort mentalement qu’avant. Du côté physique j’ai encore du chemin a faire, mais je ne crains plus rien!
Nous sommes tellement contents pour toi.
«Lâche pas la patate» comme on dit au Québec!
Hi Romain – well done – I wonder how you managed to travel and still stick to a good (organic) diet?
Hello Romain! I am 10 months out and still have Neuropathy. Very Scary. I too am a Paraglider pilot. I pray I can do it again!
I am floxed exactly one year now. The legs got better but my back is always terribly cramped no matter what I do. Just started eating all carbs again because my disgestion improved recently. But now I think that the wheat in noodles and bread makes my back cramp even more. You write that you mainly cosumed rice as carbs. Did you also eat potato? Would be nice if you write a bit more about your diet.
best regards from Germany
Matthias
I am just coming on a two year mark and definitely healing. so glad to hear your story of recovery and determination. I just went to the Banff Mountain Film Festival and was inspired once again to keep pushing for a return to the mountains. The thing I am struggling with is the need for awareness within the medical world to protect others. I just can’t stop fighting for change even though this may not be the best for my personal health. Too many people at risk. Thanks again for sharing! Best to you.
Salut Romain,
Bravo pour ton message et ton courage ! Je suis heureux pour toi que ces effets secondaires soit enfin terminé ! Je suis suisse romand, j ai 25 ans et suis agriculteur. J’ai pris cipro en mai 2015 pour une prostatite du au stress comme toi et après 15 jours j’ai du arrêter à cause de trouble de la vision, maux de tête, sensation d’ebriété, vertige, neuropathie etc. J’ai toujours réussi à marcher mais je me sentais mal et fatigué. J’ai commencé a récupérer mais c’est long et j’ai du passer par des batteries de test (Irm cébral, prise de sang, etc. ) et tout est normal comme avant. Enfin on a tous vécu la même chose et il faut regarder devant. Ca m’aurait interessé d’avoir un contact mail ou téléphone avec toi si c’est possible, redis moi. Bonne suite et profite de la vie ! Magnifique tes vidéos !
Hi Romain
I’m so inspired by your story. I’m 5 months out of my floxing. I am a sound engineer and having tinnitus and sound sensitivity. You said you recovered 100% so was wondering did the tinnitus also go away? I’m curious as it’s such an important aspect to my career.
Wishing you well !
Take care
Marc
Hi Marc,
Tinnitus was probably the last thing to go away, but it finally did. I would say it stayed for one and a half year. As far as i know (i,ve read a lot about it on web blogs, made by people touched by it without necessarily being floxed), the best thing to do is try not to pay attention too much about it, just accept it, instead of thinking “what’s wrong Inside my ears”. The more i was focusing on it, the more it was. At night, to fall asleep easier, i put low music, just enough to “cover” the noise in my ears. Also, i noticed that the tinnitus was directly related to the time i would spend on screens (computer, tv, smartphone). When i kept myself away from them for a few days, the noise was lowering. But this is only personal observation, not a scientific theory (even if i’m an engineer too 🙂
Cheers.
Hi Romain,
Wondering how long your nervous problems lasted. Did u have nervous problems in feet?
Hi Josh, Tingling burning in the feet and ankles made worse by wearing shoes, Skin sensitivity pretty much from the chest down such that stroking the skin causes my feet to tingle. Bizarre! Some tinnitus, Severe anxiety and depression. tingling in one of the intercostal nerves in my chest wall. Had a little bit of Achilles pain early on , but not much. Mine is mostly neuropathy. I am 10 months out from Cipro.
Josh, I am in Vancouver Canada, Were are you? Have you noticed any improvement?
You are the first floxie I have run across that has had mostly PN symptoms. Mine seems to have plateaued but I haven’t seen any improvement.
Romain,
How long did it take for the cracking joints to go away? Both my knees seem to crack terribly when doing a squat or going up the stairs.
I’m 10 months out and my brain simply doesn’t work like it used to. Constant brain fog and headaches make it feel like I’ll never be the same again. How long until your cognitive issues started to clear up?
Thanks for your story. I am 14 months into this journey. I took one Levofloxacin on 12-31-2014 and my left Achilles tendon split. I took three more pills before I figured it out. I have had and continue to have a myriad of problems. The various symptoms come and go but have seemed to diminish over time. Fatigue and stamina are still problems but I keep getting better and can do more and more. I am pretty much fully functional just not as good as pre-Levaquin. I am very thankful that most of this seems to be over. There is a light at the end of the tunnel!
Salut Romain… je suis Française et suis dans tout ça depuis 7 mois. C est tres difficile, lire ton histoire m a fait du bien… j aimerais vraiment te contacter si tu le voulais bien pour parler nourriture et aussi pour parler avec quelqu un qui a déjà traversé cette epreuve, et qui s en est sorti. J ignore si tu voudras reparler de ça avec moi…
Merci pour ta publication et j espère à bientôt.
Sophie