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Don Mowers
6 years ago
Just a comment. One of the problems that floxies have is peripheral neuropathy. There are many different things that are supposed to help the problem. One that appears to be worth a look is “Nerveology” https://www.nerveology.com/
As I always say. Do your own research and then make up your own mind.
Ronna
6 years ago
I guess I want the test for SIBO to see if that is a real problem. I have had no hunger for 16 months now and I miss that part of my life. Maybe I don’t have SIBO, I want to know. If yes, I will rethink the antibiotics. Has anyone else lost their hunger? They try to tell me it is a mental problem, I know better, the more you try to convince the doctor the crazier they think you are.
Andrea
6 years ago
Ehy guys, after the last disappointing experience ( I’m almost sure I’m not going to speak at the EMA earing) and after keep reading all your stories, everyday, I was thinking one thing :
what if, we, all together, create some form of “floxie earing” online or create a petition and send it to, I don’t know, radio stations, youtube channels, the FDA, the EMA, I mean trying to raise our voices, in the hope that at least, our illness will be recognized by doctors, and so we’re not going to be treated like delusional jerks by them anymore. Think about, if hundreds of singatures will be collected, and people would start talking about us, maybe something would change. Let me know what you think about it, and if you have some idea on how to move in this direction. Thanks.
Ronna
6 years ago
How do I know if I have the MTHFR mutation? Should I not have folic acid in my B vitiamin?
harriet
6 years ago
why is my comment awaiting moderation?
Andrea
6 years ago
Hey guys.
I want to share with you a curious fact that happened to me today.
This evening I received a phone call from a physiotherapist who was treating me a few months, maybe a year ago. He’s a good guy. He’s not one of those therapist/doctor who cares only about the money, and, despite his lack of knowledge about FQ’s, he always seemed very interested on my issue. He always listened to me and he was also trying, without me asking for it, to get as much info as possible on these side effects from his collegues. Anyway, today he called me and asked me how I was doing and if I finally got better. He asked me that, because the day before, another patient, came to him with my same issue (tendon pain) after just 2 pills of the same antibiotic I took.
Needless to say I was so disappointed. Not for him of course, but because of the doctor who prescribed that stuff.
He told me that the man ( the patient) immediately got scared, called the doctor who prescribed the FQ and the doc told him to stop with the “cure”, immediately.
Now, my observations here : if the poor guy started to panic immediately, the doctor, very likely, already knew and told him that the shit could cause the “tendinopathy”, but he probably considered it a remote chance ( ignorant mofo). These dumbasses keep prescribing these evil drugs, and they know the side effects on the warning label, but they don’t bother to ask themselves “uhm, tendinopathy from an antibiotic? that’s weird, why’s that? maybe I should read a little bit more about this one, maybe looking at what the scientific literature says, and you know, I’d avoid to destroy other’s people lfe”, but no, hey! they’re doctors, they already know everything they need to know…
L
6 years ago
Hey Lisa….So a number of people on this site as well as a number in a another flxoie group I am involved in, all have either one or both of the Mthfr mutations. Do you have any information on if/how that contributes to our injury? Makes us more susceptible? Are you aware of any papers out there on this? Ok, just saw your older post on this. Anything more recent on this that you are aware of? https://floxiehope.com/2016/02/18/mthfr-genetic-mutations-and-fluoroquinolone-toxicity/
Barbara Arnold
6 years ago
Don……OMG if it wasn’t true, it’s unbelievable. Terrible negligence in duty of care. Freakin cost is outrageous. So sorry.
Barbara Arnold
6 years ago
I have just found out on facebook, that if you have applied to speak at the EMA you may not have been given your answer yet. Also your loved ones can also email them to tell their side of the story. You can also email even if you have applied to attend. I urge ALL Europeans on this site to do so, please don’t leave it up to others. Even if you are Swiss I would send an email. The EMA is different than the FDA so who knows what will happen, we just may make a difference. Thanks the email is Nathalie.Bere@ema.europa.eu
Andrea
6 years ago
Hey guys. Do you have any infos about Fq’s damage and hormones? Since my urological issues got worse after the fq, I’ve done the vasopressin blood test (antidiuretic hormone) and it seems to be too low, that could be the reason why I urinate so much, even if I drink normal amounts of water.
Treatment Risks ?…….Being prescribed Cipro over the age of 60 years as I was. Being precribed cortizone injections at the same time, which is contraindicated, as I was.
Result….TENDONOPATHY, TORN TENDON, CHRONIC FATIQUE, UNABLE TO WALK, CHRONIC PAIN, PERIPHERAL NEUROPATHY. INSOMNIA, HEART ARRYTHMIA, BALANCE PROBLEMS
DEPRESSION.
Three and a half years later and some €10,000 spent to try to heal myself (as there was NO HELP from the Medical Profession,) I am in CONSTANT PAIN EVERY DAY. I have INSOMNIA and BALANCE PROBLEMS. I have PERIPHERAL NEUROPATHY. I have gained 28lbs as I am unable to exercise anymore.
All this because I had a bout of BRONCHITIS, which could have been treated with other safer medication and would not have changed my life so devistatingly.
My Opinion on safe Use ? DO NOT PRESCIBE IT UNLESS IT’S A LIFE OR DEATH SITUATION.
Doctors insist the side effects are rare…what’s rare is Doctors do not connect the dots as fluroquinolones are cummulative. Some people can take a fluroquinolone without any side effects as I COULD, I WAS PRESCRIBED CIPRO AT LEAST 3 TIMES BEFORE THE BOMB WENT OFF IN MY BODY. Some people do not get an adverse re action until weeks later, therefore never realizing what’s happened to them.
There has been A HUGE INCREASE IN FYBROMYALGIA, at the same time as an increase in overuse of Fluroquinolones. Research needs to be done.
To sum up, In my opinion the risks FAR OUTWEIGH THE BENEFITS, other safer medications can be used, especially for minor infections like Bronchitis, Sinus infections,and others.
Safe Use ? There is NONE.
I asked a local Pharmacist if he would give a fluroquinolone to his family or friends, his answer was NO.
Barbara Arnold
Barbara Arnold
6 years ago
My email is short and to the point, because I think they will take more notice. Don’t know just guessing. They are cutting down on the use of antibioctics in the UK and also here in Spain. They are getting desperate because of the over use and the costs. There was notices on my Health Centres ( laugh) doors asking patients to stop asking for antibiotics. Pity they didn’t think of that before they poisoned us.
Henk Noordhuizen
6 years ago
And YOUR viewpoint is…….?
Henk Noordhuizen
6 years ago
And,Sunbun,YOUR viewpoint is…..?
Sunbun,we are all searching for answers on matter that is not yet fully recognised,nor understood by medical science. We all do the best we can to gather information on the topic and share it.And we hope to find solutions for all the adverse reactions way before the “medical scientists” do because they are way behind us. We know from experience that these adverse reactions are real (not between the eares) and we are confronted on a daily base with the damage these poison pills do to the human body while the “professionals” still argue about,maybe,putting a more serious warning on the box.
Of course we sometimes make mistakes in interpreting the info we found; we are no professionals/scientists,but,at least,we do our f……. best to help each other find a solution.
I hope you appologise to Lisa for your critical attack; we are gratefull for the way she tries to offer us a way to share OUR VIEWS and,hopefully find solutions for those nasty adverse reactions. Thank you,Lisa;I think you’re GREAT !!!
Barbara Arnold
6 years ago
I still dont understand what you are talking about Henk. I would NEVER criticise or ATTACK Lisa. I think your getting mixed up with something else. Please point out to me where you think I have been critical and attacking ????
Andrea
6 years ago
Hey Barbara, after applying to the hearing and receiviing no resposne, yesterday I sent them an email at the address you posted, asking them why they didn’t answered me yet. Here’s her response :
Hello Andrea,
We had many requests, so it has taken some time to review and select the applications.
The list of participants will be presented and adopted at the PRAC Committee meeting on 15 May, so then we hope to contact everyone on 16 May.
Many thanks for your patience,
Kind regards,
Nathalie
Ronna
6 years ago
Tara, do you have any GI issues? How is your head pressure after 19 months? I still have these issues after 17 months hoping they disappear one day. Any suggestions? Thankfully my eyes aren’t affected, that must be awful. Can you read and concentrate on what you read?
Andrea
6 years ago
Hi guys.
I’m sure this topic has already been discussed, but I can’t find what I’m looking for in previous posts, so I apologize for bringing this up again, but lately I’ve been battling with some seroius sleep problems. For two main reasons : one is my bladder. It wakes me up many times at night, expecially when I’m finally falling asleep,,but the other one, wich I’m experiencing only lately, is this strange insomnia, that keeps me in this weird state of drowsiness for almost all night. I’m always half asleep half awake, and also lots of weird dreams or thoughts, rather, since I’m never completely asleep. Do you have any advice to help me out?
I know many of you have already mentioned Melatonin, but I was reading that taking melatonin for extended periods of time, could led to your body to stop producing it, since it’s a hormone. Anyway thanks.
Andrea
6 years ago
Thanks everyone.
Ehy Joanneg, how are you? I googled that probioitc you’ve mentioned. I only took some probiotic at the beginning of this waful jurney, just because I was scared, but I never really noticed any benefits, and luckly, I’ve never had, since being floxed, any problem wiht my guts. Did you? And if so, does the probiotic helped you in that regard. Thanks.
Andrea
6 years ago
Oh, just another thing. I’ve been always a little skeptical about probiotics supplements, because, I’ve read many times, that, while eating fermented foods (kefir, sauerkraut etc) it’s an effective way to help your gut flora, popping pills or powders, isn’t just as effective.
What’s your opinion on that?
Just a comment. One of the problems that floxies have is peripheral neuropathy. There are many different things that are supposed to help the problem. One that appears to be worth a look is “Nerveology” https://www.nerveology.com/
As I always say. Do your own research and then make up your own mind.
I guess I want the test for SIBO to see if that is a real problem. I have had no hunger for 16 months now and I miss that part of my life. Maybe I don’t have SIBO, I want to know. If yes, I will rethink the antibiotics. Has anyone else lost their hunger? They try to tell me it is a mental problem, I know better, the more you try to convince the doctor the crazier they think you are.
Ehy guys, after the last disappointing experience ( I’m almost sure I’m not going to speak at the EMA earing) and after keep reading all your stories, everyday, I was thinking one thing :
what if, we, all together, create some form of “floxie earing” online or create a petition and send it to, I don’t know, radio stations, youtube channels, the FDA, the EMA, I mean trying to raise our voices, in the hope that at least, our illness will be recognized by doctors, and so we’re not going to be treated like delusional jerks by them anymore. Think about, if hundreds of singatures will be collected, and people would start talking about us, maybe something would change. Let me know what you think about it, and if you have some idea on how to move in this direction. Thanks.
How do I know if I have the MTHFR mutation? Should I not have folic acid in my B vitiamin?
why is my comment awaiting moderation?
Hey guys.
I want to share with you a curious fact that happened to me today.
This evening I received a phone call from a physiotherapist who was treating me a few months, maybe a year ago. He’s a good guy. He’s not one of those therapist/doctor who cares only about the money, and, despite his lack of knowledge about FQ’s, he always seemed very interested on my issue. He always listened to me and he was also trying, without me asking for it, to get as much info as possible on these side effects from his collegues. Anyway, today he called me and asked me how I was doing and if I finally got better. He asked me that, because the day before, another patient, came to him with my same issue (tendon pain) after just 2 pills of the same antibiotic I took.
Needless to say I was so disappointed. Not for him of course, but because of the doctor who prescribed that stuff.
He told me that the man ( the patient) immediately got scared, called the doctor who prescribed the FQ and the doc told him to stop with the “cure”, immediately.
Now, my observations here : if the poor guy started to panic immediately, the doctor, very likely, already knew and told him that the shit could cause the “tendinopathy”, but he probably considered it a remote chance ( ignorant mofo). These dumbasses keep prescribing these evil drugs, and they know the side effects on the warning label, but they don’t bother to ask themselves “uhm, tendinopathy from an antibiotic? that’s weird, why’s that? maybe I should read a little bit more about this one, maybe looking at what the scientific literature says, and you know, I’d avoid to destroy other’s people lfe”, but no, hey! they’re doctors, they already know everything they need to know…
Hey Lisa….So a number of people on this site as well as a number in a another flxoie group I am involved in, all have either one or both of the Mthfr mutations. Do you have any information on if/how that contributes to our injury? Makes us more susceptible? Are you aware of any papers out there on this? Ok, just saw your older post on this. Anything more recent on this that you are aware of? https://floxiehope.com/2016/02/18/mthfr-genetic-mutations-and-fluoroquinolone-toxicity/
Don……OMG if it wasn’t true, it’s unbelievable. Terrible negligence in duty of care. Freakin cost is outrageous. So sorry.
I have just found out on facebook, that if you have applied to speak at the EMA you may not have been given your answer yet. Also your loved ones can also email them to tell their side of the story. You can also email even if you have applied to attend. I urge ALL Europeans on this site to do so, please don’t leave it up to others. Even if you are Swiss I would send an email. The EMA is different than the FDA so who knows what will happen, we just may make a difference. Thanks the email is Nathalie.Bere@ema.europa.eu
Hey guys. Do you have any infos about Fq’s damage and hormones? Since my urological issues got worse after the fq, I’ve done the vasopressin blood test (antidiuretic hormone) and it seems to be too low, that could be the reason why I urinate so much, even if I drink normal amounts of water.
This is what I emailed to the EMA. The email address for the EMA is Nathalie.Bere@europa.eu
Treatment Risks ?…….Being prescribed Cipro over the age of 60 years as I was. Being precribed cortizone injections at the same time, which is contraindicated, as I was.
Result….TENDONOPATHY, TORN TENDON, CHRONIC FATIQUE, UNABLE TO WALK, CHRONIC PAIN, PERIPHERAL NEUROPATHY. INSOMNIA, HEART ARRYTHMIA, BALANCE PROBLEMS
DEPRESSION.
Three and a half years later and some €10,000 spent to try to heal myself (as there was NO HELP from the Medical Profession,) I am in CONSTANT PAIN EVERY DAY. I have INSOMNIA and BALANCE PROBLEMS. I have PERIPHERAL NEUROPATHY. I have gained 28lbs as I am unable to exercise anymore.
All this because I had a bout of BRONCHITIS, which could have been treated with other safer medication and would not have changed my life so devistatingly.
My Opinion on safe Use ? DO NOT PRESCIBE IT UNLESS IT’S A LIFE OR DEATH SITUATION.
Doctors insist the side effects are rare…what’s rare is Doctors do not connect the dots as fluroquinolones are cummulative. Some people can take a fluroquinolone without any side effects as I COULD, I WAS PRESCRIBED CIPRO AT LEAST 3 TIMES BEFORE THE BOMB WENT OFF IN MY BODY. Some people do not get an adverse re action until weeks later, therefore never realizing what’s happened to them.
There has been A HUGE INCREASE IN FYBROMYALGIA, at the same time as an increase in overuse of Fluroquinolones. Research needs to be done.
To sum up, In my opinion the risks FAR OUTWEIGH THE BENEFITS, other safer medications can be used, especially for minor infections like Bronchitis, Sinus infections,and others.
Safe Use ? There is NONE.
I asked a local Pharmacist if he would give a fluroquinolone to his family or friends, his answer was NO.
Barbara Arnold
My email is short and to the point, because I think they will take more notice. Don’t know just guessing. They are cutting down on the use of antibioctics in the UK and also here in Spain. They are getting desperate because of the over use and the costs. There was notices on my Health Centres ( laugh) doors asking patients to stop asking for antibiotics. Pity they didn’t think of that before they poisoned us.
And YOUR viewpoint is…….?
And,Sunbun,YOUR viewpoint is…..?
Sunbun,we are all searching for answers on matter that is not yet fully recognised,nor understood by medical science. We all do the best we can to gather information on the topic and share it.And we hope to find solutions for all the adverse reactions way before the “medical scientists” do because they are way behind us. We know from experience that these adverse reactions are real (not between the eares) and we are confronted on a daily base with the damage these poison pills do to the human body while the “professionals” still argue about,maybe,putting a more serious warning on the box.
Of course we sometimes make mistakes in interpreting the info we found; we are no professionals/scientists,but,at least,we do our f……. best to help each other find a solution.
I hope you appologise to Lisa for your critical attack; we are gratefull for the way she tries to offer us a way to share OUR VIEWS and,hopefully find solutions for those nasty adverse reactions. Thank you,Lisa;I think you’re GREAT !!!
I still dont understand what you are talking about Henk. I would NEVER criticise or ATTACK Lisa. I think your getting mixed up with something else. Please point out to me where you think I have been critical and attacking ????
Hey Barbara, after applying to the hearing and receiviing no resposne, yesterday I sent them an email at the address you posted, asking them why they didn’t answered me yet. Here’s her response :
Hello Andrea,
We had many requests, so it has taken some time to review and select the applications.
The list of participants will be presented and adopted at the PRAC Committee meeting on 15 May, so then we hope to contact everyone on 16 May.
Many thanks for your patience,
Kind regards,
Nathalie
Tara, do you have any GI issues? How is your head pressure after 19 months? I still have these issues after 17 months hoping they disappear one day. Any suggestions? Thankfully my eyes aren’t affected, that must be awful. Can you read and concentrate on what you read?
Hi guys.
I’m sure this topic has already been discussed, but I can’t find what I’m looking for in previous posts, so I apologize for bringing this up again, but lately I’ve been battling with some seroius sleep problems. For two main reasons : one is my bladder. It wakes me up many times at night, expecially when I’m finally falling asleep,,but the other one, wich I’m experiencing only lately, is this strange insomnia, that keeps me in this weird state of drowsiness for almost all night. I’m always half asleep half awake, and also lots of weird dreams or thoughts, rather, since I’m never completely asleep. Do you have any advice to help me out?
I know many of you have already mentioned Melatonin, but I was reading that taking melatonin for extended periods of time, could led to your body to stop producing it, since it’s a hormone. Anyway thanks.
Thanks everyone.
Ehy Joanneg, how are you? I googled that probioitc you’ve mentioned. I only took some probiotic at the beginning of this waful jurney, just because I was scared, but I never really noticed any benefits, and luckly, I’ve never had, since being floxed, any problem wiht my guts. Did you? And if so, does the probiotic helped you in that regard. Thanks.
Oh, just another thing. I’ve been always a little skeptical about probiotics supplements, because, I’ve read many times, that, while eating fermented foods (kefir, sauerkraut etc) it’s an effective way to help your gut flora, popping pills or powders, isn’t just as effective.
What’s your opinion on that?