For over a decade this page has been dedicated to enabling the conversation for floxies to talk with one another. Sign up and subscribe to get all the latest comments.
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
I allow to create an account
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
26.5K Comments
Inline Feedbacks
View all comments
Lane
10 years ago
Hi Peter,
I can totally relate to your situation and your frustration. I have been floxed 4 times since 2011; I’ve taken at least 5 weeks worth of CIPRO (500mg twice daily) total and was never told about the blackbox warning or any ADR by any doctor. I remember reading the ADR about tendinopathy when I researched CIPRO online, but I never felt any tendinosis until 14 months from my last floxing, so I never connected my non-tendonopathy symptoms to CIPRO. I have also seen several dozen doctors from 3 countries and been to Mayo and the Cleveland Clinics. Nobody understands floxing, nobody can predict what will happen after you are floxed, and most doctors simply deny it. We have theories and Lisa has very good ones, but we simply don’t know how this drug destroys our bodies. All we can do is either address the symptoms with meds, herbs, supplements, or whatever, or try to remedy the source of the problem that we theorize is severe mitochondrial depletion with meds, herbs, supplements, or whatever; but as far as I know, nothing has been proven to help except for time.
Whereas time is usually not an ally in degenerative diseases (which floxing clearly mimics), time has been PROVEN in nearly all cases of floxing to resolve and improve symptoms…unfortunately it takes a lot of time. I have reached the 22 month mark, my symptoms progressed for 14 months and they finally seem to have plateaued with minor cycles since then. Every day is still a struggle for me, but when I have a cycle (or relapse) I realize how much I have healed because the cycles remind me of where I was and what I used to experence everyday. There is no evidence to suggest that this will shorten your lifespan (as heart disease or diabetes will), it might even make you more resilient to disease. This isn’t BS here, this is reasonable and looking at this wholistically is reasonable. Yes, you are injured, but you aren’t dying and allowing yourself to trust the fact that your body is capable of healing itself without your meddling is completely reasonable and necesssary. Remember the good days, the moments between the symptoms, and look at the whole picture; this mindset and letting time pass naturally (in my experience) are your 2 biggest allies.
Peter
10 years ago
Thanks for the support. It’s just very hard to see any good in this situation when the symptoms are becoming so debilitating, like the difficulty breathing 24/7 and ankle problems, which have led to having to sit down to stop activities involving walking…which is everything. I just wish I could do more than wait and hope. While some things I understand are hard for a doctor to fix, an obviously growth in my nose isn’t something I would expect cluelessness on. 6 months now and I suspect it’s causing the blue nails due to lack of oxygen.
My question to you is has anything helped? Eating healthy, certain vitamins, etc.? Ive read stories where people have died from this unfortunately, so waiting and not being proactive is a little discerning.
Diego
10 years ago
I went to my ENT this past Wednesday and it was a good visit. She is the one who prescribed levaquin to me. I told her I was still not 100 percent but much better after 3.4 years after my last levaquin intake. We discussed so much and I told her how I felt I had a doctorate in levaquin and their side-effects. She again told me sorry for taking part in this and to my surprise she told me, “you know more of the damages levaquin can do, than I do”. However, this time I told her she was part of my journey in recovering. As far as my annual follow up with endoscopic surgery I had 9 years ago I am doing well. No allergies nor pollyps. I told her I have been eating really healthy and using essential oils. It does feel really good she validates levaquin did this and that she is the one who prescribed it to me for six years every time I had a sinus infection. She gave me her undivided attention and listened and we discussed that when I am closer to 100 percent better, it would be good to pursue my dream of teaching in Europe and persuing my dream of becoming a school principal! Hang in there everyone, we will get there!!! Stay strong, positive, and optimistic! Happy weekend!
Diego
10 years ago
I forgot to mention that acupuncture has really helped me a lot and at the end of my visit with my ENT, she asked, “may I give you a hug?” That felt good, I know she feels very bad, but hey we are all human. She asked for my family as they were the ones who used to take me in the past to my appointments, but now, I can drive myself and actually go and enjoy some shopping after my appointment! Definitely some progress! You too will get there!
Peter
10 years ago
Thank you for all the replies, I’ll be sure to dig through them later today and start trying what I can, especially those tests. I’ll have to find someone to order them now…side note I’m in Ohio.
Jane
10 years ago
I just found this site, and I’m really glad I did. It’s nice to read recovery stories for a change.
I was floxed by Levaquin about 15 months ago. Though most of my issues have healed, I still have some lingering tendon problems.
In the beginning I was a mess with muscle, nerve, and tendon damage. My leg muscles would twitch all over with noticeable fasciculations, and all my muscles were wasting away. I had peripheral neuropathy and also experienced bee sting-like sensations. The tendons were the worst. I had all-over, full-body tendon pain, especially in my Achilles. It felt like someone had poured acid on my heels and even the smallest movement of an ankle or putting the slightest pressure on my feet was agonizing. There were some milder mental and internal issues as well, but they took a back seat to the ones causing the most pain.
Now it’s 15 months later, and everything else has resolved except tendons, though they have greatly improved. It’s only my Achilles that are sore. They alternate between feeling too tight or like jello. The rest of my tendons have healed.
I feel like I need to be more active, and I do get around much better now, but soreness limits my progress. I’m unsure if trying to push through the pain would be helpful or damaging. That’s my dilemma now. I’m fully capable of gritting my teeth and forcing myself to keep going despite the pain, but worried that it might do more harm than good. I don’t want to experience a setback after all the progress I’ve made, but don’t want to baby it too much either. I want to get over this last hump and finally be fully healed. I’m just confused about what my best course of action should be.
Marcy
10 years ago
Thank you, everyone, for these posts and demystifying the toxic processes that have been happening to me since taking Levofloxacin last week.
There are lots of interesting posts about supplements and acupuncture and other treatments to alleviate symptoms and repair damage but can anyone recommend specific physical therapies?
I am located in Los Angeles County–can anyone recommend health care providers?
I am in a state of panic, but this site has been a tremendous help. Thank you.
Michael Teeter
10 years ago
Hello everyone,
I have discontinued or at least slowed down the IV treatments because they seem to have lost their effect. I have now started acupuncture treatments and boy can I tell a difference.
I have been doing a little more research on other treatments and I came across PROLOTHERAPY has anyone had any experience with this?
Thanks,
Michael
Diego
10 years ago
Michael I found that acupuncture worked best for me. Acupuncture really works.
Michael Teeter
10 years ago
Hey has anyone tried or heard of Homeocipro? I guess it was designed by doctor Manfred Mueller at Homeopathic Associates. I guess it is only available by prescription.
Just was wondering.
Casey
10 years ago
Yeah you guys are right about not taking anti-inflamatory after taking these meds. I had my tooth pulled and I didn’t want to take my prescription but that day sucked so I did. But I only took one pill on that day just one. Now I’m feeling some of the symptoms that did go away but have now come back. Just curious do these go away again like it did before or are they gonna linger around or get worse?
Casey
10 years ago
Oh and the reaction happened about 2 to 3 days after taking it and I had the extraction done wednesday of last week at 8:30 am.
Jimmy
10 years ago
Michael, did you ever get an answer? I have heard lots of people talk about it but no one who ever said I tried it and it cured me. Lisa passed along a message from someone who tried the levaquin version, but I have not been able to get in touch with her for mor info. And I’ve spoken to 3 homeopaths and not a single one had heard of the levaquin version. I’d love to speak to the one persons homeopath and get more info, but again, I haven’t heard back from anyone after asking her to contact me. I have heard that dr m charges several thousand dollars for the treatment, and apparently once chastised someone who didn’t take it under his care for not taking it correctly when they said it didn’t work. And if you look at his Facebook page you’ll see that he post many messages about how terrific he is but no one is allowed to post on his wall, which makes me wonder a great deal… my other thought on this is that with homeopathy you use a little bit of whatever it was that hurt you, at least that’s my understanding, and I’m not putting 1 molecule of Levaquin or Cipro in my body ever again. Let me know if you’ve heard anything different.
Mike
10 years ago
Did any one experience Eye floaters from taking Cipro and How lond did they last. I have read eye floaters are perminent. Also have read they can disolve or sink over time and that the brain will just adjust to them and ignore them. I got mine about 5 months in post floxing.
Peter
10 years ago
Has anyone had burning cheeks or a burning face? I’ve had this since June 2013 until maybe Feb 2014 and then it stopped till May 2014. Now it’s back to everyday, all day. It’s miserable. I’m wondering if it is inflammation or nerve damage in my face, but hard to know. The neurologist wasn’t sure when I last went last year. Any thoughts? Anyone else in this situation?
Casey
10 years ago
I have no idea I guess the usual stuff that dentists uses, felt like the same feeling when they do a cavity filling.
Jimmy
10 years ago
Hi Marcy, I don’t know if you can saw my message but you’re welcome to contact me as I am a fellow foxy in Los Angeles. I have a great naturapath who has helped me a great deal and getting through fluoroquinolone toxicity. I also go to acupuncture at UCLA East West College of medicine which is covered through my insurance and I actually get unlimited sessions, and they really know what they are doing. It’s helped me a great deal. If you. Would like to talk more please feel free to contact me at my email above.
Jimmy
10 years ago
Casey, is it possibly you wouldn’t mind finding out the name of the numbing agent. I have heard that epinephrine can cause problems for floxies and nit sure what to tell them to give me for a coming root canal…it would meant a lot if you can. Thanks.
Jimmy
10 years ago
Hello everyone, has anyone else out here had problems with chelated magnesium? I’ve been taking it for 13 months now with no problems and recently I added ionized magnesium, and it made me extremely dizzy. Once I removed it from my supplement list I noticed that even the chelates magnesium was causing me extreme dizziness. And it had never impacted me this way before! Has anyone noticed this happening to them after sometime? Becoming suddenly allergic to a supplement after being fine with it? Magnesium?
Brandon
10 years ago
Hello Everyone,
I recently saw a doctors who suggested a procedure two procedures, both IV based — one is called cell symbiosis therapy, and the other is called phospholipid exchange therapy. Has anyone heard of these? I have three concerns of course 1) effectiveness; 2) possibly making things worse; 3) cost.
Any thoughts on either would be gratefully received.
Hi Peter,
I can totally relate to your situation and your frustration. I have been floxed 4 times since 2011; I’ve taken at least 5 weeks worth of CIPRO (500mg twice daily) total and was never told about the blackbox warning or any ADR by any doctor. I remember reading the ADR about tendinopathy when I researched CIPRO online, but I never felt any tendinosis until 14 months from my last floxing, so I never connected my non-tendonopathy symptoms to CIPRO. I have also seen several dozen doctors from 3 countries and been to Mayo and the Cleveland Clinics. Nobody understands floxing, nobody can predict what will happen after you are floxed, and most doctors simply deny it. We have theories and Lisa has very good ones, but we simply don’t know how this drug destroys our bodies. All we can do is either address the symptoms with meds, herbs, supplements, or whatever, or try to remedy the source of the problem that we theorize is severe mitochondrial depletion with meds, herbs, supplements, or whatever; but as far as I know, nothing has been proven to help except for time.
Whereas time is usually not an ally in degenerative diseases (which floxing clearly mimics), time has been PROVEN in nearly all cases of floxing to resolve and improve symptoms…unfortunately it takes a lot of time. I have reached the 22 month mark, my symptoms progressed for 14 months and they finally seem to have plateaued with minor cycles since then. Every day is still a struggle for me, but when I have a cycle (or relapse) I realize how much I have healed because the cycles remind me of where I was and what I used to experence everyday. There is no evidence to suggest that this will shorten your lifespan (as heart disease or diabetes will), it might even make you more resilient to disease. This isn’t BS here, this is reasonable and looking at this wholistically is reasonable. Yes, you are injured, but you aren’t dying and allowing yourself to trust the fact that your body is capable of healing itself without your meddling is completely reasonable and necesssary. Remember the good days, the moments between the symptoms, and look at the whole picture; this mindset and letting time pass naturally (in my experience) are your 2 biggest allies.
Thanks for the support. It’s just very hard to see any good in this situation when the symptoms are becoming so debilitating, like the difficulty breathing 24/7 and ankle problems, which have led to having to sit down to stop activities involving walking…which is everything. I just wish I could do more than wait and hope. While some things I understand are hard for a doctor to fix, an obviously growth in my nose isn’t something I would expect cluelessness on. 6 months now and I suspect it’s causing the blue nails due to lack of oxygen.
My question to you is has anything helped? Eating healthy, certain vitamins, etc.? Ive read stories where people have died from this unfortunately, so waiting and not being proactive is a little discerning.
I went to my ENT this past Wednesday and it was a good visit. She is the one who prescribed levaquin to me. I told her I was still not 100 percent but much better after 3.4 years after my last levaquin intake. We discussed so much and I told her how I felt I had a doctorate in levaquin and their side-effects. She again told me sorry for taking part in this and to my surprise she told me, “you know more of the damages levaquin can do, than I do”. However, this time I told her she was part of my journey in recovering. As far as my annual follow up with endoscopic surgery I had 9 years ago I am doing well. No allergies nor pollyps. I told her I have been eating really healthy and using essential oils. It does feel really good she validates levaquin did this and that she is the one who prescribed it to me for six years every time I had a sinus infection. She gave me her undivided attention and listened and we discussed that when I am closer to 100 percent better, it would be good to pursue my dream of teaching in Europe and persuing my dream of becoming a school principal! Hang in there everyone, we will get there!!! Stay strong, positive, and optimistic! Happy weekend!
I forgot to mention that acupuncture has really helped me a lot and at the end of my visit with my ENT, she asked, “may I give you a hug?” That felt good, I know she feels very bad, but hey we are all human. She asked for my family as they were the ones who used to take me in the past to my appointments, but now, I can drive myself and actually go and enjoy some shopping after my appointment! Definitely some progress! You too will get there!
Thank you for all the replies, I’ll be sure to dig through them later today and start trying what I can, especially those tests. I’ll have to find someone to order them now…side note I’m in Ohio.
I just found this site, and I’m really glad I did. It’s nice to read recovery stories for a change.
I was floxed by Levaquin about 15 months ago. Though most of my issues have healed, I still have some lingering tendon problems.
In the beginning I was a mess with muscle, nerve, and tendon damage. My leg muscles would twitch all over with noticeable fasciculations, and all my muscles were wasting away. I had peripheral neuropathy and also experienced bee sting-like sensations. The tendons were the worst. I had all-over, full-body tendon pain, especially in my Achilles. It felt like someone had poured acid on my heels and even the smallest movement of an ankle or putting the slightest pressure on my feet was agonizing. There were some milder mental and internal issues as well, but they took a back seat to the ones causing the most pain.
Now it’s 15 months later, and everything else has resolved except tendons, though they have greatly improved. It’s only my Achilles that are sore. They alternate between feeling too tight or like jello. The rest of my tendons have healed.
I feel like I need to be more active, and I do get around much better now, but soreness limits my progress. I’m unsure if trying to push through the pain would be helpful or damaging. That’s my dilemma now. I’m fully capable of gritting my teeth and forcing myself to keep going despite the pain, but worried that it might do more harm than good. I don’t want to experience a setback after all the progress I’ve made, but don’t want to baby it too much either. I want to get over this last hump and finally be fully healed. I’m just confused about what my best course of action should be.
Thank you, everyone, for these posts and demystifying the toxic processes that have been happening to me since taking Levofloxacin last week.
There are lots of interesting posts about supplements and acupuncture and other treatments to alleviate symptoms and repair damage but can anyone recommend specific physical therapies?
I am located in Los Angeles County–can anyone recommend health care providers?
I am in a state of panic, but this site has been a tremendous help. Thank you.
Hello everyone,
I have discontinued or at least slowed down the IV treatments because they seem to have lost their effect. I have now started acupuncture treatments and boy can I tell a difference.
I have been doing a little more research on other treatments and I came across PROLOTHERAPY has anyone had any experience with this?
Thanks,
Michael
Michael I found that acupuncture worked best for me. Acupuncture really works.
Hey has anyone tried or heard of Homeocipro? I guess it was designed by doctor Manfred Mueller at Homeopathic Associates. I guess it is only available by prescription.
Just was wondering.
Yeah you guys are right about not taking anti-inflamatory after taking these meds. I had my tooth pulled and I didn’t want to take my prescription but that day sucked so I did. But I only took one pill on that day just one. Now I’m feeling some of the symptoms that did go away but have now come back. Just curious do these go away again like it did before or are they gonna linger around or get worse?
Oh and the reaction happened about 2 to 3 days after taking it and I had the extraction done wednesday of last week at 8:30 am.
Michael, did you ever get an answer? I have heard lots of people talk about it but no one who ever said I tried it and it cured me. Lisa passed along a message from someone who tried the levaquin version, but I have not been able to get in touch with her for mor info. And I’ve spoken to 3 homeopaths and not a single one had heard of the levaquin version. I’d love to speak to the one persons homeopath and get more info, but again, I haven’t heard back from anyone after asking her to contact me. I have heard that dr m charges several thousand dollars for the treatment, and apparently once chastised someone who didn’t take it under his care for not taking it correctly when they said it didn’t work. And if you look at his Facebook page you’ll see that he post many messages about how terrific he is but no one is allowed to post on his wall, which makes me wonder a great deal… my other thought on this is that with homeopathy you use a little bit of whatever it was that hurt you, at least that’s my understanding, and I’m not putting 1 molecule of Levaquin or Cipro in my body ever again. Let me know if you’ve heard anything different.
Did any one experience Eye floaters from taking Cipro and How lond did they last. I have read eye floaters are perminent. Also have read they can disolve or sink over time and that the brain will just adjust to them and ignore them. I got mine about 5 months in post floxing.
Has anyone had burning cheeks or a burning face? I’ve had this since June 2013 until maybe Feb 2014 and then it stopped till May 2014. Now it’s back to everyday, all day. It’s miserable. I’m wondering if it is inflammation or nerve damage in my face, but hard to know. The neurologist wasn’t sure when I last went last year. Any thoughts? Anyone else in this situation?
I have no idea I guess the usual stuff that dentists uses, felt like the same feeling when they do a cavity filling.
Hi Marcy, I don’t know if you can saw my message but you’re welcome to contact me as I am a fellow foxy in Los Angeles. I have a great naturapath who has helped me a great deal and getting through fluoroquinolone toxicity. I also go to acupuncture at UCLA East West College of medicine which is covered through my insurance and I actually get unlimited sessions, and they really know what they are doing. It’s helped me a great deal. If you. Would like to talk more please feel free to contact me at my email above.
Casey, is it possibly you wouldn’t mind finding out the name of the numbing agent. I have heard that epinephrine can cause problems for floxies and nit sure what to tell them to give me for a coming root canal…it would meant a lot if you can. Thanks.
Hello everyone, has anyone else out here had problems with chelated magnesium? I’ve been taking it for 13 months now with no problems and recently I added ionized magnesium, and it made me extremely dizzy. Once I removed it from my supplement list I noticed that even the chelates magnesium was causing me extreme dizziness. And it had never impacted me this way before! Has anyone noticed this happening to them after sometime? Becoming suddenly allergic to a supplement after being fine with it? Magnesium?
Hello Everyone,
I recently saw a doctors who suggested a procedure two procedures, both IV based — one is called cell symbiosis therapy, and the other is called phospholipid exchange therapy. Has anyone heard of these? I have three concerns of course 1) effectiveness; 2) possibly making things worse; 3) cost.
Any thoughts on either would be gratefully received.