People often ask me if they are going to recover from fluoroquinolone toxicity. I struggle to answer them.
The most truthful and honest answer I can give is, “I don’t know.” I truly don’t. I don’t know how anyone else’s body is going to react to this poison. I don’t know if you’re going to get worse or better. I don’t know what your timeline will be. I don’t know if you’ll go through cycles. I don’t know if you’ve hit the worst of what is going to happen and your journey is all uphill from here, or if your pain and suffering have just begun.
Fluoroquinolone toxicity is so strange and individualized. There are some people who are permanently disabled by one pill, while there are others who tolerate multiple prescriptions of fluoroquinolones with no notable effect, but with their hundredth pill a “bomb” goes off in their body. Some reactions are sudden and easily noticeable, while other people have a gradual accumulation of damage and they slowly notice that they have insomnia, anxiety, GI distress, and that they cannot tolerate foods or chemicals like they used to – those people are floxed, but they often think that they’re “just getting old.” There are some people who have delayed reactions, there are some people who have immediate reactions. Reactions range in severity from mild to severe.
Different things help different people. Some people are helped by supplements, IVs, acupuncture, chiropractic, physical therapy, special diets, etc. But other people aren’t helped by those things, and some people are even hurt by them.
Everyone is different. I don’t know whether or not you will recover. I wish I did so I could give a better answer than, “I don’t know.” I can tell you that I have recovered. I recovered fully. I can work, hike, bike, travel, sleep, eat, and function as I did before I took ciprofloxacin. Probably because of my perspective as a person who has fully recovered, I tend to believe that many, maybe most, people can recover. People send me their recovery stories, and there are many more people who I see post things about their recovery on facebook. I see people move on with their lives. It’s hard to tell from facebook posts whether or not people are healed – you can’t see pain – but you can see that people are continuing to live life and that their pain and illness don’t consume every aspect of who they are. I see healing. I know that it can happen.
I also know that not everyone recovers. It needs to be acknowledged that some people are PERMANENTLY injured by Cipro, Levaquin, Avelox, Floxin, and the generic fluoroquinolones. Some of those people are permanently disabled because of muscle wasting and tendon tears, some of them struggle with chronic and permanent pain, some develop autoimmune diseases for which there is no cure, some never gain their energy back, some have insomnia that negatively affects every aspect of their life, some have serious psychiatric issues, some people have intractable GI issues and food intolerances, etc. The people who are severely floxed, who are not going to recover, deserve acknowledgement and respect for their struggles. Severely floxed people are some of the strongest people I know. During a conversation with friend of mine who was SEVERELY floxed (she was bedbound and paralyzed for months, and it hurt for her to blink) I noted that if she had been floxed at the level that I was (a moderate reaction) she would still be running, but if I was floxed at the level that she was, I’d be dead. She is so, so, so, so strong, and she has my undying respect and admiration.
When people ask me if they are going to be okay, if they are going to recover and heal, I think that they’re often looking for reassurance. On some level, they must know that I don’t actually know whether or not they’re going to heal (I’m just a fellow floxie who happens to write on the internet), but they want to hear someone who has been through it say, “You’re going to be okay. You will heal. It will get better.” I often say that to people. I believe it too. I think that it’s true for many, maybe most, people. Our bodies really do have amazing healing abilities. There are people who are floxed at all levels who see changes in their condition, and even healing. (My friend mentioned above has made remarkable progress. She may never recover to the point where she can run again, but she is no longer bed-bound.) Health ebbs and flows. Our bodies are constantly healing, and aging, and going through good times and bad. Most importantly, I think that hope is important, and that it’s healing. Reassuring people, and telling them that they’re going to be okay, gives them hope. Telling them that I have recovered gives them hope that they too will recover. Telling them that recovery is possible helps them to get through the hard times.
Hope is really, really, important.
Acknowledging that these drugs can do permanent damage, and giving respect to the permanently injured people who are living with the damage, is important too.
I try to walk the line between giving hope and acknowledging the pain that these drugs cause. I do my best, but I’m not always successful. I believe that it is the right thing to do to reassure people when they are scared, and to give them hope when possible. I also believe that it is the right thing to do to tell the truth (that I don’t know). Sometimes those things aren’t reconcilable.
Perhaps the best answer to the question of, “Will I be okay?” is, “I don’t know, but I can tell you that I fully recovered, so I know that it’s possible.” That’s the truth. And I hope that my recovery gives all who hear about it hope that they too will recover. Hope really is important and healing. It’s vital, and I hope that I can give you hope while still acknowledging that I don’t know what the future holds for myself or anyone else.
After over 3 years I’m still not recovered. My main problem are my tendons, and of course general weakness after having been so strong when I was healthy it’s also the hardest part for me.
I didn’t reach the point of no return, yet.
What baffles me the most though is the lack of action taken by the experts and doctors, especially the ones who prescribed FQ to us and ruined our lives. They need to be held accountable for their actions, because if they aren’t they’ll continue on their destructive path and increase the member count of sites like floxiehope.
Thank you for your continuous effort Lisa, well appreciated by us floxies and not appreciated enough by healthcare professionals.
PS: So…when does the FDA plan to take action against FQ? Maybe in 20 years when thousands of additional people got f’ed?
Thank you Lisa. I’ve started to write my story many times but then decided I wasn’t ready. Its almost at 3 years and I m probably as recovered as I am going to get. I had some issues going on before I was floxed, fibromyalgia, osteoarthritis, tinnitus and vertigo. I managed those issues just fine and did mostly everything I wanted to do. I guess my experience with Cipro would be considered moderate to mild. I had burning and pain all over, severe (at times) muscle twitches, weakness in my leg muscles, and shaking at night while trying to sleep. my eyelids twitched, I did not sleep well and I was an emotional wreck basically. I took magnesium and received weekly Accupuncture for several months to try and get better. I really took things easy and tried to remain optimistic. I also stopped seeing my family doctor and long time friend who did not believe me about the Cipro. The symptoms lasted only about 4 months so I know I am very lucky.
Today, I am about the same as I was prior to the Cipro poinsoning. My knees have gotten worse which I believe happened from the Cipro but other than that, I feel good all things cconsidered. I make it my business to tell everyone I can about this class of antibiotics. All of my current docs Know that I cannot have any drug in this class. I’ve discovered lots of people ( coworkers, neighbors, friends) who had reactions to Cipro or levaquan as well.
Thank goodness I found your website when all of this happened to me. I really felt like I had a chance after reading so many stories. Thank you again. God bless.
You’re right Lisa.
There’s no way of telling. Its all so individual.
I try my best to comfort people.
I’ve seen total recovery only to relapse several years later. I’ve been bedridden…but then clawed my way out of that situation.
I’m not symptom free but I’ve come leaps and bounds from where I was. For that I’m grateful. I can do most anything I want to do.
I’m going to England tomorrow to see my dear mum who turns 80 on the 18th and see the rest of my family. Its been 6 yrs since I’ve been home. I never thought I’d see the outside of my bedroom so I’m extremely lucky.
Somehow my body seems to be able to repair itself.
I stay positive that one day I’ll be symptom free. Or at least very close.
I don’t let it take over my life. Life needs to be lived.
I know things are improvijng even if sometimes it feels like they are not.
Last yr i i couldn’t drink alcohol. Now i can have a glass of wine. Or a margarita.
I’m nowhere near as food sensitive.
Yes i still tingle. I have tinnitus and the most annoying thing is the head pressure. But it’s gone from a 10 to a 1 or 2 in intensity.
I just bought hearing aids but that wasn’t anything to do with floxing. I was losing my hearing before that.So I’m getting used to hearing litrally EVERYTHING .lol
I laugh a lot. And that one thing we stop doing for awhile. That to me was huge…the first time I really laughed after floxing. It meant recovery.
I had a run in with a flouroquinolone 2 weeks ago.
My dog had emergency surgery. She was given meds to bring home. Me not thinking I sorted them out and put them in cheese. She spat them out. So I was pushing them into her mouth and they where melting onto my hands.
A few hours later I got very light headed. Didn’t feel good at all.
I checked her meds and one was a flouroquinolone. OMG!!!
Panic set in and I have to say I did flare for a few days but i also realize i was panicked and that causes its own issues. I did throw them out. I’m back to my base line happily.
Can’t get away from this stuff !!!
I hope recovery comes to us all. I know it doesn’t but it’s my hope.
I do think the mind can cause us to be frozen in the moment. Can stop us healing. So staying positive no matter what is key.
Hard at times i know. But it works for me
You’re incredible Lisa. I think that’s about as close to perfect a response that you could give. You have an amazingly big, beautiful heart.
Lisa is indeed a very giving gracious hero in all this, helping to try and clean up the mess that Big Pharma and the FDA have created here.
As an expert on health, and Floxing, I do want to address one aspect of this article:
“Some of those people are permanently disabled because of muscle wasting and tendon tears, some of them struggle with chronic and permanent pain, some develop autoimmune diseases for which there is no cure, some never gain their energy back, some have insomnia that negatively affects every aspect of their life, some have serious psychiatric issues, some people have intractable GI issues and food intolerances, etc.”
With the knowledge and experience I now have, I am very sure that many of these people can AVOID the above situations, if they were to act swiftly, doing the correct things needed for them, once they have been floxed. Some of these people would even be helped greatly long after, by again doing the right things, but after enough time has gone by without doing them (or worse, doing the wrong things) there also might be some injuries that are then irreversible, though I am not convinced of this given how how brilliantly the body was designed, and how miraculous it can recover, when given the right tools.
Note also that Autoimmune conditions ARE curable, just don’t go to a Western Medicine Doctor, of course.
It is VERY unfortunate, that there are virtually no experts out there on Floxing who really understand the many facets of it, and the body, to be able to help people, and there are sooooooo many pitfalls that a very vulnerable Floxie can fall into. Thankfully they do at least have Lisa and FH to assist them in their research, and to give them hope. 🙂 Good job Lisa!
I want to take a moment to echo the previous posts and say THANKS for your honesty, Lisa. You could easily tell us what we want to hear but that’s not the reality of the situation.
Having that hope though, is crucial. I think most of us are clinging on to your and others’ full recovery so that we, ourselves, can one day get there and get back to normal living.
Let’s hope we all get there at some point.
Hi Dear friends, I am here to tell you about my problem , I was ill last April 2016, I got better then I had 2 relaxes, the last one was very bad with horrible pains , mental fog, etc , but no neuropathy burning , all this time I was taking everything that we have try, but even like I still have bad again, I loss my hope because I was in the most pain than before plus mental fog , ear pain, vertigo, I thought it was my end, so watching videos in YouTube, I saw a nutricionist talking about the benefits of bone broth and free sugar gelatin, so I got free sugar gelatin and I start drinking one tea spoon in a glas of water 5 times a day in empty stomach , I start getting better the sequent day , after 2 weeks all my symptoms disappear, I am better than before, and I am not drinking the others vitamins any more, just the magnesium every other day, but I still drinking the gelatin 3 times a day . I just mencione this to you, it may help you, good luck everybody, sorry for my grammar ????????
Also, like bone broth, you want to make sure the source is good and not containing any antibiotics, etc
I will hit my 1 year anniversary of being floxed on Sept 1, 2017. I’m a 35 Y/O woman, was prescribed 750 mg of Levaquin for 10 days. I’m a runner (or was, but I will be again one day!) and was in peak condition when I started taking Levaquin. On day 7, I woke up with a searing pain in my right hip, and over the course of the next 6 weeks I experienced tendonitis (most pronounced in achilles, hips, elbows) and pain so severe in my bones, joints and muscles that I couldn’t walk and didn’t go to work for 8 weeks. I also experienced insomnia, muscle weakness and brain fog and feeling like I was completely out of my mind at times. I consider myself quite fortunate that I found a doctor where I live in Columbus OH who had treated several patients before me for FQ Toxicity, and he was able to treat me. I am still being treated through Field Control Therapy, and it has helped me tremendously. I feel 99% recovered, and can walk long distances and climb stairs swiftly and without pain or tenderness, and have recently started jogging very short distances. I also followed the advice of both guidebooks mentioned on this website, and found both to be helpful. But I am convinced that Field Control Therapy put me over the edge to a near full recovery, and I know I will get there one day. I encourage everyone on this site to look into FCT and would be happy to talk with anyone about my experience. It’s not an overnight fix; it’s not drug, supplement, or herbal-based (to be clear, I took magnesium, Vit D and multi-vit as recommended in the Fluoroquinolone Toxicity Solution). This method of treatment has been used for a few decades to treat patients with toxicity of all kinds — most often it’s lead, mercury, mold, etc. but it can also help those of us suffering pharmaceutical toxicity (and often times, we might have underlying toxicity issues that were previously unknown to us). There is not a lot of information about FCT online, but some of the resources I read to get a better understanding of it can be found here: http://www.yurkovsky.com/what-is-fct%C2%AE/. This site specifically mentions early results of treating quinolone toxicity with FCT, you can find it in the search feature. I can personally attest to the benefits I experienced. I wish you all patience and strength in your recovery.
JP and Anna, sorry, I’ve been away for a while. Yes, his name is David Siegel and he has seen a small handful of other patients over the years who have been floxed by FQs. His practice is called BioHealth Wellness Center. I would be happy to discuss my experience with anyone interested in learning more. Today is an important day for me — it was 1 year ago today that I realized I was floxed and had never been more terrified in my entire life. I am almost back to normal; in fact, I ran 1/2 mile last weekend for the first time since taking Levaquin. Healing is possible and does happen.
I’m starting to loose hope myself it’s been 6 months now and I still feel the same with Immense pain I y legs and hands especially, as well as hallucinations and a general feeling of deep depression. Before this hell started I was telling my wife how happy I was and couldn’t imagine a better life for myself. For those that do recover what’s the average time frame that they started to see improvements? I know everyone is different I just want to know an average and did others recover after feeling the same after 6 months?
Thanks
I’m going worse …..now I can’t walk for the orrible pain I have into my leg…..I’m 9 mounths out of Cipro and at the beginning I was much much much better than now…..
I’m eating the same things and taking the same supplements…but going worse every day is worse…..now I can’t walk)I’m at home) I have pain and my legs are so weak I can stand only for few minutes…my tendons are going worse too….the pain now is in my face too I have problems to eat……I’m so scared.
Where do you even start if you suspect you are suffering from taking too much Cipro? What do you avoid, what do you supplement with?
At 3 pills my tendons screams…..so…I understood! I begun with supplements after 2 weeks…Mag,B complex,Carnitine,vit C and so on…..Increase supplements etc.but I’m going worse…I have pain everywhere.
Stopped a 10 day course of 500mg levofloxacin halfway through due to tendon pain all over whole body. Two weeks in was convinced I would never walk, fish, hike or do anything i enjoyed ever again. One month later im already showing major improvements! Stay Positive! Eat clean (no gluten and lots of supplements)! You can do it! you can recover!!!!!
I received levoquin/Cipro in 2010 after going on a run and developing prostatitis. My mid back immediately started hurting they stopped the IV then gave me Cipro to take, after 10 days on it I developed chest pains and my first anxiety attack. I was told to stop Cipro and it would go away. That was 2010, today 8 years later I continue with mid thoracic pain, rib pain, hot spots between ribs, and feel my lymph nodes swell at times, get very depressed, and endurance very low. I am a nurse, earlier this year I injured my back ended up having discectomy on my lower back. It’s almost a year I still can’t work anxiety gotten bad again, depression yet I still push on started school again and continue. I live in very rural area where I explained to my GP what happened he chalked it up to anxiety not feeling I fit in and talked me into trigger point up and down my back. Then I did more research that says steroid injections not good. I told my dr he brushed it off saying the trigger points would help I had to trust him. They do not work, after lidocaine wares off back to paint not to mention horrible thoracic spasms. Since low back surgery I been waiting three months to see pain management but I know what they will want to do. Steroids. I know they will cause my anxiety to go way up and insomnia will worsen. I don’t know what else to do. I love the medical field but feeling all my years in it and it is letting me down. Totally frustrated. No help, definite no help in rural area. Just wanted to vent. Thanks.
Thanks for not giving false hope. I’ve had someone do that with me and it’s a bummer – wish they hadn’t put in their two cents because it ended up harming not helping that the “hope” was touted and not practical solutions to try as you have over the years. Guess that’s what being floxed was all about – a lesson in not being so trusting and accepting without question
what you’re told these drugs.
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