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Ann B
6 years ago
Hi everyone,
I just stumbled onto this website today. I finished a course of cipro for UTI and tues I started experiencing bi-lateral groin pain that has me barely able to walk and with extreme pain. I went back to ED and all tests came back negative and they said “sorry don’t know the cause” and sent me home with narcotics which I refuse to take. I have been scouring the internet and came across a correlation between my complaints and cipro injection which lead me to this site. My mind is reeling, I am terrified
and angry and don’t know what to do first. But pain is the worse issue right now so any suggestions where to start??? AnnB
Barbara Arnold
6 years ago
Ann B. The first thing is get some magnesium in you. Dr. Carolyn Deans website will give you lots of info on mag and cipro. I use her Remag and Remyte which is a bunch of balanced minerals. All very absorbable. Or you can get it in tablet form, malate is good not oxide as thats not very absorbable. Cipro leeches magnedium from the cells. Kerri knox’s book will also give you lots of information about suppliments. Take the mag up to 1000mg or until you get loose stools, then you can back off a little. Tap on resources at the top of this page, tons of help there. Act quickly and you may be okay. xxx
Barbara Arnold
6 years ago
Ann B……As soon as you can go on a gluten and sugar free diet as both cause inflammation.
What sort of pain do you have ?
Barbara Arnold
6 years ago
Oh Ann B so sorry this has happened to you. The medical profession do this to you then don’t have any answers, you have to find the way to heal yourself. The reason the tests come back perfect is, this is damage at the cellular level and also they don’t look in the right place. This is another reason they don’t believe you when they can’t find anything wrong. You are doing the right things at the moment, but get lots of magnesium inside you as well. Coq10 is good, but make sure it’s Ubiquinol. Don’t know anything about BCCA’s sorry. Vit D3 Also. I can only tell you that after 3 years I am almost recovered and I did not know what happened to me for 7 months, so I never took anything untill then, so you have a heads up. Don’t expect to feel better overnight, it’s a marathon, not a sprint. Keep researching and take it easy. CBD oil is good for pain, just make sure you research it thoroughly first and start slow. Good luck xxx
Andrea
6 years ago
Hi Joanneg.
After following your suggestion, today I’ve tried the Remyte Solution, I’ve only had 1/2 teaspoon so far, but I’ll let you know if I’m gonna find it helpful.
Matt
6 years ago
What are the safest alternatives for bacterial pneumonia treatment? I’ve read in severe cases antibiotic treatment is almost always needed.
Tyreese
6 years ago
Hi everyone here, I stumbled on this site while trying to search information about the horrible condition I’m feeling right now. its been a week since i was floxed with Ciprobay. The doctor suspected UTI only to find out later that a small stone along the ureter is the culprit. it’s been 4 days since my last cipro tablet (500mg -twice-5 days). i felt betrayed and depressed right now and to make it worst i’ve been having severe anxiety. I’m not able to sleep. My heartbeat races. My stomach produces a lot of acid, I developed gastric symptom, Blurred vision, burning pain on the back of my shoulder and limbs. It hurts, I lost my appetite and interest on whatever i used to do. I feel like I’m dying. Nobody understand how i feel because to them an antibiotic is only antibiotic, it gets its job done and that’s it. Someone please help me, what do I do to calm this anxiety? will it ever go away? can i still take the magnesium pill as suggested by some of the postings above?.
ava
6 years ago
hi
six months since taking cipro and neuropathy has been acting up a lot recently .. didnt get neuropathy right away but like two months later. .. but neuropathy has been bothering alot. any advice, suggestions?
thanks
Barbara Arnold
6 years ago
Harriet, sorry there was no reply marker on your post, so I hope you get this. I live in Spain, but I get my CBD oil from the UK. Many of the CBD sellers deliver worldwide, but I know you can get it in the US as I have seen it on facebook. It is legal in most states, so I would go on CBD face book where you will get lots of good advice and information. You have to be careful and make sure whoever you buy from is genuine and not selling snake oil . Many people on facebook can tell you or head you in the right direction. Hope this helps xxxx
A.Coleman
6 years ago
Hey floxies – in need of a pep talk and not getting support from my family. My situation is a little odd in that the only symptoms I still suffer from are poor sleep and digestive issues. The tendon problems and neuropathy are in the past. Digestive problems have always been my biggest issue as a floxie. I am about 27 months out from my floxing event.
Currently, I suffer from very mild GERD and a generalized sense of pain/nausea in my stomach. I feel if I could just beat this I would be well, but I have been struggling with my current set of stomach symptoms for over a year now. During that time neuropathy finally went away and I had beat the tendon problems even earlier.
I have tried both increasing stomach PH using Betaine HCL and PH reduction using first H2 inhibitors (I refused PPIs) just for two weeks and then lowest possible dose of antacids. I am now down to one 500mg antacid once or twice a week, but the nausea and stomach pain are actually getting worse. Gastroenterologist does believe I was floxed, but offers nothing in way of treatment other than saying it will get better but take time, though I am now more than 2X past his anticipated healing time.
My main problem is the sense of desperation about getting well that I deal with. Passing the two year mark as a floxie was VERY hard. I have gotten depressed and feel that I get no joy out of life. I had my 50th birthday as a floxie and am starting to wonder if I will ever enjoy life like I used to again.
I go to work every day and even engage in social situations, but must force myself to go and am in pain most days. Yesterday was my birthday and we are supposed to go to dinner tonight, but all I want to do is go home and crawl in bed. I do experience a few days every now and then that are essentially normal – maybe 1 or 2 days a month for the last three or four months and know that compared to many of you this is fantastic. Even had a whole week of these essentially normal days about 10 days ago and thought maybe I was finally well only to have another relapse. I am certain that part of my problem is the anxiety and stress of my situation that results in a negative reinforcement loop. The days of feeling essentially normal actually increase the stress when I relapse and get frustrated.
Planing to go see a therapist after the holidays and may even go back on an SSRI more for it’s ability to work on stomach neruons than as antidepressant. (I had been on SSRI for nearly 10 years before stopping about 1 year before getting floxed. I took them again for about 4 months shortly after my floxing, but wanted to get off and successfully did for a second time.)
Your thoughts and shared experiences are greatly appreciated.
Barbara Arnold
6 years ago
Bob, Hot is Hyperbaric Oxygen Therapy. I Had burning, stinging, like a thousand bee’s in my lower legs. Very painful. Most days between 7 to 10 on a scale of 10 being the worst. Hyperbaric really took most of it away.
Barbara Arnold
6 years ago
For those of you in Europe, check out 10 pass ozone. Aparently it’s the lastest healing thing. Look up the centre in Cyprus, they do a complete healing package with the gut and the 10 pass ozone. I have a floxie friend who’s going there for treatment. Watch this space.
Barbara Arnold
6 years ago
Madge,
Sorry about your tendon problems and yes you do start to think you won’t get better because you sometimes get worse before you get better. It’s really weird as 2 years in I was coping quite well, my symptoms were, really heavy legs, like they had lead weights attached to them. They just wouldn’t do what I needed them to do, but strangely no pain. They would swell up to twice their size after walking. I also had terrible insomnia. Some nights I wouldn’t sleep at all, but again strangely I didn’t feel tired. It was like my brain was wide awake. Before being floxed I could sleep 8 hours on a washing line, no problem.When I first got floxed, I did have chronic fatique. Looking back on all this my symptoms kept changing. Then from heavy legs to really bad Peripheral Neuropathy. Burning, stinging, electric type shocks, pain, pain, I would wake up crying it was so bad. From there I tried quite a few things including acupunture and kept a daily log, pain levels were anything from 5 to 10 with 10 being the worst. So then I had 20 sessions of hyperbaric oxygen therapy, at first I was a bit skeptic but I was getting desperate. Anyway for me it worked. At the same time I took CBD oil and tincture, that really helped with sleep issues. I’m getting up to 6 hours a night now, and at times maybe more. I also took Magnesium, Coq10 ubiquinol, Vit C, Vit D3 .
So I guess what I’m trying to say is, yes for some of us things can seem to get worse, but that does not mean they won’t get better. You just have to find whats right for you and NEVER give up.
Feliz Navidad Madge and to you all. Who knows what next year will bring, so take even those little moments to be hopeful. xxx
Barbara Arnold
6 years ago
Madge forgot to say I am 38 months out, so time is a big factor to xxx
Virginia
6 years ago
I have been reading Anthony William’s “Medical Medium” book about chronic/mystery illnesses, and hope it might help us heal. I’ve had a really terrible year with 3 broken bones, and a laundry list of other problems. No idea if it’s all Lyme and Cipro or something else too. I would love to get answers, and he claims to often be able to diagnose mystery illness. I have not yet implemented his dietary and supplement suggestions, but some of his ideas are very different and intriguing. I may pay for a reading with him some day, though it’s $500 and the wait can be long. Anyone here heard of him or tried his healing protocols?
Harriet
6 years ago
I stumbled across an alleged surgical cure for neuropathy. It is a private hospital so probably quite expensive.
The surgeon specialises in surgical procedures for this condition and is based at a private hospital in London .The results look promising.
Andrea
6 years ago
Hi guys, a little update on my symptomps, hoping that sharing my experience will help someone.
I’m really demotivated and depressed these days, thinking how naive I’ve been, to trust that doctor a year ago. Been eating really unhealthy lately, something that, in the past, had made my symptoms fleared up. But strangely enough, right now my symptoms are quite in the ” good range” expect for the depression, of course. The only thing I’ve added to my stack (wich is only vitamin D3 with K2) is a 10% CBD oil. It’s a swiss brand. I’m sure in the US there are way stronger options to choose. But anyway, it’s probably giving me some help, expecially regarding the joint/muscle/tendeon pain. I’ve been taking it for 5-6 days now. The downside is that it’s very expensive. 75 euros (more or less 75 US dollars) for just 1000 ml. Anyway, my verditc is that, it’is quite reliable, as a more natural painkiller.
Sarah
6 years ago
You can order it on the internet, just type in CBD oil. There are many companies in CO.
Barbara Arnold
6 years ago
Guys,
If you are on facebook you can find out lots of info on CBD users facebook.UK, US, EUROPE
Andrea
6 years ago
Hi guys.
I suspect that, after being floxed, I became sensitive to heat. I’ve read other floxies have this side effect. As a matter of fact, this summer, sympomts fleared up at full strenght. Any thoughts on that? I understand that’s probably my messed up nervous system, but why specifically heat? Thanks.
Hi everyone,
I just stumbled onto this website today. I finished a course of cipro for UTI and tues I started experiencing bi-lateral groin pain that has me barely able to walk and with extreme pain. I went back to ED and all tests came back negative and they said “sorry don’t know the cause” and sent me home with narcotics which I refuse to take. I have been scouring the internet and came across a correlation between my complaints and cipro injection which lead me to this site. My mind is reeling, I am terrified
and angry and don’t know what to do first. But pain is the worse issue right now so any suggestions where to start??? AnnB
Ann B. The first thing is get some magnesium in you. Dr. Carolyn Deans website will give you lots of info on mag and cipro. I use her Remag and Remyte which is a bunch of balanced minerals. All very absorbable. Or you can get it in tablet form, malate is good not oxide as thats not very absorbable. Cipro leeches magnedium from the cells. Kerri knox’s book will also give you lots of information about suppliments. Take the mag up to 1000mg or until you get loose stools, then you can back off a little. Tap on resources at the top of this page, tons of help there. Act quickly and you may be okay. xxx
Ann B……As soon as you can go on a gluten and sugar free diet as both cause inflammation.
What sort of pain do you have ?
Oh Ann B so sorry this has happened to you. The medical profession do this to you then don’t have any answers, you have to find the way to heal yourself. The reason the tests come back perfect is, this is damage at the cellular level and also they don’t look in the right place. This is another reason they don’t believe you when they can’t find anything wrong. You are doing the right things at the moment, but get lots of magnesium inside you as well. Coq10 is good, but make sure it’s Ubiquinol. Don’t know anything about BCCA’s sorry. Vit D3 Also. I can only tell you that after 3 years I am almost recovered and I did not know what happened to me for 7 months, so I never took anything untill then, so you have a heads up. Don’t expect to feel better overnight, it’s a marathon, not a sprint. Keep researching and take it easy. CBD oil is good for pain, just make sure you research it thoroughly first and start slow. Good luck xxx
Hi Joanneg.
After following your suggestion, today I’ve tried the Remyte Solution, I’ve only had 1/2 teaspoon so far, but I’ll let you know if I’m gonna find it helpful.
What are the safest alternatives for bacterial pneumonia treatment? I’ve read in severe cases antibiotic treatment is almost always needed.
Hi everyone here, I stumbled on this site while trying to search information about the horrible condition I’m feeling right now. its been a week since i was floxed with Ciprobay. The doctor suspected UTI only to find out later that a small stone along the ureter is the culprit. it’s been 4 days since my last cipro tablet (500mg -twice-5 days). i felt betrayed and depressed right now and to make it worst i’ve been having severe anxiety. I’m not able to sleep. My heartbeat races. My stomach produces a lot of acid, I developed gastric symptom, Blurred vision, burning pain on the back of my shoulder and limbs. It hurts, I lost my appetite and interest on whatever i used to do. I feel like I’m dying. Nobody understand how i feel because to them an antibiotic is only antibiotic, it gets its job done and that’s it. Someone please help me, what do I do to calm this anxiety? will it ever go away? can i still take the magnesium pill as suggested by some of the postings above?.
hi
six months since taking cipro and neuropathy has been acting up a lot recently .. didnt get neuropathy right away but like two months later. .. but neuropathy has been bothering alot. any advice, suggestions?
thanks
Harriet, sorry there was no reply marker on your post, so I hope you get this. I live in Spain, but I get my CBD oil from the UK. Many of the CBD sellers deliver worldwide, but I know you can get it in the US as I have seen it on facebook. It is legal in most states, so I would go on CBD face book where you will get lots of good advice and information. You have to be careful and make sure whoever you buy from is genuine and not selling snake oil . Many people on facebook can tell you or head you in the right direction. Hope this helps xxxx
Hey floxies – in need of a pep talk and not getting support from my family. My situation is a little odd in that the only symptoms I still suffer from are poor sleep and digestive issues. The tendon problems and neuropathy are in the past. Digestive problems have always been my biggest issue as a floxie. I am about 27 months out from my floxing event.
Currently, I suffer from very mild GERD and a generalized sense of pain/nausea in my stomach. I feel if I could just beat this I would be well, but I have been struggling with my current set of stomach symptoms for over a year now. During that time neuropathy finally went away and I had beat the tendon problems even earlier.
I have tried both increasing stomach PH using Betaine HCL and PH reduction using first H2 inhibitors (I refused PPIs) just for two weeks and then lowest possible dose of antacids. I am now down to one 500mg antacid once or twice a week, but the nausea and stomach pain are actually getting worse. Gastroenterologist does believe I was floxed, but offers nothing in way of treatment other than saying it will get better but take time, though I am now more than 2X past his anticipated healing time.
My main problem is the sense of desperation about getting well that I deal with. Passing the two year mark as a floxie was VERY hard. I have gotten depressed and feel that I get no joy out of life. I had my 50th birthday as a floxie and am starting to wonder if I will ever enjoy life like I used to again.
I go to work every day and even engage in social situations, but must force myself to go and am in pain most days. Yesterday was my birthday and we are supposed to go to dinner tonight, but all I want to do is go home and crawl in bed. I do experience a few days every now and then that are essentially normal – maybe 1 or 2 days a month for the last three or four months and know that compared to many of you this is fantastic. Even had a whole week of these essentially normal days about 10 days ago and thought maybe I was finally well only to have another relapse. I am certain that part of my problem is the anxiety and stress of my situation that results in a negative reinforcement loop. The days of feeling essentially normal actually increase the stress when I relapse and get frustrated.
Planing to go see a therapist after the holidays and may even go back on an SSRI more for it’s ability to work on stomach neruons than as antidepressant. (I had been on SSRI for nearly 10 years before stopping about 1 year before getting floxed. I took them again for about 4 months shortly after my floxing, but wanted to get off and successfully did for a second time.)
Your thoughts and shared experiences are greatly appreciated.
Bob, Hot is Hyperbaric Oxygen Therapy. I Had burning, stinging, like a thousand bee’s in my lower legs. Very painful. Most days between 7 to 10 on a scale of 10 being the worst. Hyperbaric really took most of it away.
For those of you in Europe, check out 10 pass ozone. Aparently it’s the lastest healing thing. Look up the centre in Cyprus, they do a complete healing package with the gut and the 10 pass ozone. I have a floxie friend who’s going there for treatment. Watch this space.
Madge,
Sorry about your tendon problems and yes you do start to think you won’t get better because you sometimes get worse before you get better. It’s really weird as 2 years in I was coping quite well, my symptoms were, really heavy legs, like they had lead weights attached to them. They just wouldn’t do what I needed them to do, but strangely no pain. They would swell up to twice their size after walking. I also had terrible insomnia. Some nights I wouldn’t sleep at all, but again strangely I didn’t feel tired. It was like my brain was wide awake. Before being floxed I could sleep 8 hours on a washing line, no problem.When I first got floxed, I did have chronic fatique. Looking back on all this my symptoms kept changing. Then from heavy legs to really bad Peripheral Neuropathy. Burning, stinging, electric type shocks, pain, pain, I would wake up crying it was so bad. From there I tried quite a few things including acupunture and kept a daily log, pain levels were anything from 5 to 10 with 10 being the worst. So then I had 20 sessions of hyperbaric oxygen therapy, at first I was a bit skeptic but I was getting desperate. Anyway for me it worked. At the same time I took CBD oil and tincture, that really helped with sleep issues. I’m getting up to 6 hours a night now, and at times maybe more. I also took Magnesium, Coq10 ubiquinol, Vit C, Vit D3 .
So I guess what I’m trying to say is, yes for some of us things can seem to get worse, but that does not mean they won’t get better. You just have to find whats right for you and NEVER give up.
Feliz Navidad Madge and to you all. Who knows what next year will bring, so take even those little moments to be hopeful. xxx
Madge forgot to say I am 38 months out, so time is a big factor to xxx
I have been reading Anthony William’s “Medical Medium” book about chronic/mystery illnesses, and hope it might help us heal. I’ve had a really terrible year with 3 broken bones, and a laundry list of other problems. No idea if it’s all Lyme and Cipro or something else too. I would love to get answers, and he claims to often be able to diagnose mystery illness. I have not yet implemented his dietary and supplement suggestions, but some of his ideas are very different and intriguing. I may pay for a reading with him some day, though it’s $500 and the wait can be long. Anyone here heard of him or tried his healing protocols?
I stumbled across an alleged surgical cure for neuropathy. It is a private hospital so probably quite expensive.
The surgeon specialises in surgical procedures for this condition and is based at a private hospital in London .The results look promising.
Hi guys, a little update on my symptomps, hoping that sharing my experience will help someone.
I’m really demotivated and depressed these days, thinking how naive I’ve been, to trust that doctor a year ago. Been eating really unhealthy lately, something that, in the past, had made my symptoms fleared up. But strangely enough, right now my symptoms are quite in the ” good range” expect for the depression, of course. The only thing I’ve added to my stack (wich is only vitamin D3 with K2) is a 10% CBD oil. It’s a swiss brand. I’m sure in the US there are way stronger options to choose. But anyway, it’s probably giving me some help, expecially regarding the joint/muscle/tendeon pain. I’ve been taking it for 5-6 days now. The downside is that it’s very expensive. 75 euros (more or less 75 US dollars) for just 1000 ml. Anyway, my verditc is that, it’is quite reliable, as a more natural painkiller.
You can order it on the internet, just type in CBD oil. There are many companies in CO.
Guys,
If you are on facebook you can find out lots of info on CBD users facebook.UK, US, EUROPE
Hi guys.
I suspect that, after being floxed, I became sensitive to heat. I’ve read other floxies have this side effect. As a matter of fact, this summer, sympomts fleared up at full strenght. Any thoughts on that? I understand that’s probably my messed up nervous system, but why specifically heat? Thanks.