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It is looking more and more like reactive arthritis triggered by an infection and an adverse reaction to ciprofloxacin. They want to do another test called an HLB-27 to rule it out.
Maybe draw off my knees. I feel it is to much of a coincidence not to be cipro related.
Been a year already. Wow where has the time gone?
Carrie
10 years ago
I am having one of those moments – feeling so overwhelmed and filled with anxiety about whether or not I am going to get better. I am almost a year out from my last floxing. I think I have improved maybe 10%. My brain fog is better, but my burning pain is so bad. Most days I am at a 7 on the pain scale. Nothing has helped it so far. I take all the supplements that other have recommended, I have had acupuncture.. Before knowing about floxing, I had gone to a pain management doctor who of course gave me pain medicine. The pain medicine didn’t do anything for me, so I stopped taking it. There are times when I feel like the doctor I have seen have missed something – my MRI’s were normal, my blood tests were fine…but I still wonder if I have left a stone unturned. I don’t want to see another doctor – as I don’t know what other type of doctor I would need to see. I need to get some relief from the 24/7pain. My life has been altered by Cipro and I know deep down that this is what is wrong with me. I just need to have hope.. I just need to know that I WILL get better.
B
10 years ago
Hi Everyone
If there is a free App, where you can keep track of everyday:
1, the supplements you take (e.g., magnesium, glutathione)
2, the drugs you take (e.g., pain killers, anti-depression drugs)
3, the pain level
4, the food you take
5, the mood of today
6, other factors…
and then after a week/month (and half a year), it can generate a curve to show potential relations between the factors above.
Will you use it ?
Would it be useful to you ?
—- Especially the potential relations between “supplements” and “pain level” —-
Has anyone here experienced facial rash like rosacea or Lupus racoon mask sometimes called the butterfly rash, since being floxed? I got it real bad almost over night.
Mark
10 years ago
Did anyone test their amino acids?
I tested both serum and urine sample and the result is that I have no inherent metabolic disorder.
That being said some of them where pretty low and since they play a big part in almost all physiological processes I was wondering if any of you checked for them?
For example dry skin, dry eyes, hair falling out etc can all be signs of an amino acid deficit.
Mark
Daniela
10 years ago
I also refused to take plaquenil or lyrica or any of the others. I put turmeric powder mixed in arnica-infused oil that I make myself, and stopped consuming any dairy. It really helps.
Michael, I’ve gotten a few large skin stains on my back that no one can explain. The Chinese acupuncturist says they show blocked circulation. Great 🙁
daniela
10 years ago
my Ra was 17 and he said it was supposed to be 13. still wanted to give me plaquenil — actually wrote me a letter that it had no side effects. Then the nurse or receptionist called to put me on the schedule for monthly blood tests, saying, The medication you want (no) is very toxic to the liver (!) She also sneered that I probably wanted steroids (!!!)
I was in such agony because I tore lots of things but I said I am most emphatically not looking for pain killers! I want to get healthier! I also have such bad vertigo, I really need to be careful.
Anyhow…even Dr Weil says that doctors are wrong about prescribing medications for RA, it can and does reverse itself — and he advises you not to take plaquenil or dmards or what have you even if you really do have RA. http://www.drweil.com/drw/u/QAA153653/rheumatoid-arthritis
Eat sardines, mix some turmeric powder in oil and rub it in, take an epsom salt bath, no dairy. I had pure yellow hands and achilles tendons and the pain was gone for over a year! I think I got it back a month ago because I refloxed through eating meat, but after a week of yellow stained body parts, I am doing pretty well pain wise now and don’t put it on anymore.
I’m working on the depersonal yucky part now. If I didn’t have this site to look at, I would be so sad right now 🙂 🙂 🙂 Don’t worry everyone, it’ll be all right!
KEL, CP, Jordan – Thank you for your comments. As I mentioned I am two and a half years out, and was hit hard in the beginning. I’m mystified by the change in my body tissue. One week of kick scooting has caused a relapse of acute Achilles tendonitis and now plantar fascitis. I have to work from home for four weeks and am risking my job. he scary thing is not know what your limits are. Sometimes, you can feel good, but when you try to do something physical, you realize “nope, my tissue” can’t take it. Other times, you pursue an activity, and after day 3 you fall apart like a house of cards with a convalescence of months.
The darn nerve symptoms persist. This is now the third fall in a row where I get very cold extremities.
CP – Hope you’re right about the general course of this toxicity. However, I know folks who are 7 years out and still dealing with it.
Debs
10 years ago
Hi Angie,
I am so glad you chose not to go down that route, as Plaquenil is in the quinolone ‘ family ‘ , and considered a cousin of the FQs, The eye damage is the better known ADR overall , but it can cause also cause various other numerous ADRs, many of them are unfortunately very familiar to us.
not sure what to do… the pain and burning in my upper hamstrings is really bad.. I can’t even bring my knees to my chest.. should I try to stretch them? Or will that just make it worse? I used to be able to stretch and touch my palms to the floor, now I can barely lean forward as it is so painful. Prior to floxing I could do stretches and some yoga poses, now I can’t seem to do either.
Hey gang my parents just recently went to the optometrist to get their eyes checked to see if they needed new glasses. Their eye doc asked if they had any medical allergies. Well since my floxing they always put fluoroquinolones. Their doc asked about this and they explained the whole cipro and levaquin thing. Antibiotics with fluoride in them. The optometrist told them ok then said I don’t know if you are aware of this but almost all eye drops have fluoride
in them, including the ones they us to check the pressure in their eyes.
Just FYI.
rich
10 years ago
i dont know what id do without this site…….i never got to see them but did you guys ever view the healing stories from the old yahoo forums i heard there was hundreds on there? ……;)
Debs
10 years ago
Hi Michael,
The fluorine is actually not thought to be the main reason we are so damaged, as the original Quinolones before the fluorine- carbon bond was attached to the pharmacore, ALSO caused a lot damage, very similar injuries , they actually hurt many people, subsequently a lot of them were actually withdrawn from the market. The original Quinolone compound, btw, on which ALL Quinolones/FQs are based is Nalidixic acid, which was approved in 1962, this is a known listed documented carcinogen.
The Quinolone family as a whole are indeed nasty drugs, the anti malarial cousins to the FQs such as Larium, Plaquenil etc, ALSO carry the potential to cause severe ADRs, again many familiar to us.
Fluorine is added to drugs, in order to make them more potent ( i.e. toxic) & of course also to save money for Big Pharma, as then less of the active ingredient is then actually needed. This in the FQs, is in a form of a carbon-fluorine bond. Adding the fluorine allows far greater penetration into every organ, every cell of the body , including of course far easier crossing of the blood-brain barrier. In Some fluoridated drugs. for example, inhaled General anaesthesia, the Carbon- fluorine is known to destabilise , & if this occurs the fluorine is then metabolised into free fluoride -ion in the liver. A sign of this occurring is the raising of the the serum fluoride level in the blood, this is suspected to happen with the FQs, when a paediatric study was carried out with a single pill of Cipro, this showed a 12 hour rise in serum fluoride levels, & subsequent excretion of fluoride in the urine some hours later. The fluorine added to the FQs imo certainly adds to the severity of our ADRs, & IMO, is also a reason behind why the majority of the fluoridated drugs, i.e. the psychotropics / statins for example ALSO have such severe potential ADRs, & IMO, is also a contributory factor behind the noted cognitive decline in the elderly which can then often later lead to dementia , also the learning difficulties which are showing up in children, who have had to go under anaesthesia numerous times at a young age.
The fluorine added to the FQs, although not thought to be the main reason for our injuries, why we are so damaged, IMO is certainly a major contributing factor to the severity of them & I believe it has a LOT to answer for .
Mark
10 years ago
Hey @ all,
Is here anyone who’s taking Iodine supplements and/or eating a lot of iodine containing food?
Mark
Alex H
10 years ago
Hi everyone. Finally decided to post my experience with Cipro. Is there a light at the end of this tunnel?
My experience:
About 5 months ago I came down with a bad stomach bug in Mexico that sent me to the hospital. Was put on an IV and recovered in a few hours. Doctor prescribed Cipro. Got home from the doctor and rested for several hours.
Then I took my first dose of Cipro – just 1 pill. About 30 minutes later I started to get a slight tremor throughout my body. The tremor gradually increased. It was a frightening experience. I felt like I had adrenaline running through my veins but no way to get rid of it. Turns out (though I didn’t realize it at the time) that I was having symptoms of anxiety and panic attack. Needless to say, I stopped taking Cipro immediately. Not one more pill. Yet the symptoms have continued in some degree ever since.
So, here I am, 5 months later and still having symptoms with anxiety/panic. I don’t ever have a full blown panic attack like that first night, but every morning I still wake up with nausea and jitters. It’s just “uncomfortable” and my days are not enjoyable like they used to be. That’s the best way to describe my life at the moment: “uncomfortable”. I also have a host of stomach issues that seem to accompany the anxiety, but after careful experimentation with various drugs (Imodium/Xanax), it seems that the stomach issues are caused by the anxiety and not the other way around.
My doctor prescribed Xanax in case I need it, but I’m “right on the border” of taking it regularly. Part of me hopes that this issue will go away on it’s own. The other part tells me that I should take whatever I need to feel better, no matter the potential long-term damage (addiction/dependence).
Has anyone else had to deal with long term anxiety/panic from taking Cipro? Is there a tried and true method to expedite recovery time? I feel like I’m improving, but it’s just going so damn slow. I’m 29 and in perfect health (aside from this), so I would think that my recovery should be relatively fast. But after 5 months I’m still having symptoms. This seems too long. Far too long. Keep in mind that I’ve never had any neurological, psychiatric or psychological problems before Cipro. So I’m in new territory here – a stranger in a strange land, so to speak. Any help would be appreciated. Thank you all, kindly.
Carrie
10 years ago
It seems like after reading many posts/comments, that people have more of an immediate reaction to a FQ (within days of the pills) rather than a delayed one . For me, after having been floxed numerous times, and connecting many dots, the pain got worse each time I was given Cipro *yet, I didn’t know it was from the Cipro) and then the last time I took Cipro (last November) is when all hell broke loose. I believe I took Cipro in summer 2009 and then noticed pain in about December 2009. I tried to remember when I first start feeling pain many years ago, and it seems like the pain escalated about 4-5 months AFTER taking Cipro. Is it possible for a reaction to begin a few months later? Unfortunately, I have taken Cipro many times since 2009 – the last time Nov 2013 when my pain reached level 10. I have since tried to remain positive but it has been a really rough year for me. It is driving me crazy trying to remember when all the pain began – and finding out if it all corresponded to when I was given Cipro again.
Melanie Kemp
10 years ago
I had to take Azithromycin.Ive been sitting on it for over a week.Terrified but decided I had to take it.So I did.4 hours ago.
So far so good.I cant tell you how panicked I was.This is actually the only antibiotic I was able to safely take before floxing but wasnt sure how id react after.
Least I know I am still ok with it.
I did get a slightly tight throat but I think that was more anxiety than anything else.
phew!!!!
brian
10 years ago
Great. Now they’re coming up with new poisons to deal with FQ-resistant bacteria. I didn’t understand most of this, but I like how they refer to the new quinazolinediones as “topoisomerase poisons.”
Carrie
10 years ago
does anyone take antioxidant N-acetyl-L-cysteine (NAC)? is it something that might help floxies?
Thanks on your marvelous posting! I really enjoyed reading it,
you could be a great author.I will be sure to bookmark your
blog and may come back in the foreseeable future.
I want to encourage that you continue your great job, have a nice holiday weekend!
It is looking more and more like reactive arthritis triggered by an infection and an adverse reaction to ciprofloxacin. They want to do another test called an HLB-27 to rule it out.
Maybe draw off my knees. I feel it is to much of a coincidence not to be cipro related.
Been a year already. Wow where has the time gone?
I am having one of those moments – feeling so overwhelmed and filled with anxiety about whether or not I am going to get better. I am almost a year out from my last floxing. I think I have improved maybe 10%. My brain fog is better, but my burning pain is so bad. Most days I am at a 7 on the pain scale. Nothing has helped it so far. I take all the supplements that other have recommended, I have had acupuncture.. Before knowing about floxing, I had gone to a pain management doctor who of course gave me pain medicine. The pain medicine didn’t do anything for me, so I stopped taking it. There are times when I feel like the doctor I have seen have missed something – my MRI’s were normal, my blood tests were fine…but I still wonder if I have left a stone unturned. I don’t want to see another doctor – as I don’t know what other type of doctor I would need to see. I need to get some relief from the 24/7pain. My life has been altered by Cipro and I know deep down that this is what is wrong with me. I just need to have hope.. I just need to know that I WILL get better.
Hi Everyone
If there is a free App, where you can keep track of everyday:
1, the supplements you take (e.g., magnesium, glutathione)
2, the drugs you take (e.g., pain killers, anti-depression drugs)
3, the pain level
4, the food you take
5, the mood of today
6, other factors…
and then after a week/month (and half a year), it can generate a curve to show potential relations between the factors above.
Will you use it ?
Would it be useful to you ?
—- Especially the potential relations between “supplements” and “pain level” —-
Has anyone here experienced facial rash like rosacea or Lupus racoon mask sometimes called the butterfly rash, since being floxed? I got it real bad almost over night.
Did anyone test their amino acids?
I tested both serum and urine sample and the result is that I have no inherent metabolic disorder.
That being said some of them where pretty low and since they play a big part in almost all physiological processes I was wondering if any of you checked for them?
For example dry skin, dry eyes, hair falling out etc can all be signs of an amino acid deficit.
Mark
I also refused to take plaquenil or lyrica or any of the others. I put turmeric powder mixed in arnica-infused oil that I make myself, and stopped consuming any dairy. It really helps.
Michael, I’ve gotten a few large skin stains on my back that no one can explain. The Chinese acupuncturist says they show blocked circulation. Great 🙁
my Ra was 17 and he said it was supposed to be 13. still wanted to give me plaquenil — actually wrote me a letter that it had no side effects. Then the nurse or receptionist called to put me on the schedule for monthly blood tests, saying, The medication you want (no) is very toxic to the liver (!) She also sneered that I probably wanted steroids (!!!)
I was in such agony because I tore lots of things but I said I am most emphatically not looking for pain killers! I want to get healthier! I also have such bad vertigo, I really need to be careful.
Anyhow…even Dr Weil says that doctors are wrong about prescribing medications for RA, it can and does reverse itself — and he advises you not to take plaquenil or dmards or what have you even if you really do have RA.
http://www.drweil.com/drw/u/QAA153653/rheumatoid-arthritis
Eat sardines, mix some turmeric powder in oil and rub it in, take an epsom salt bath, no dairy. I had pure yellow hands and achilles tendons and the pain was gone for over a year! I think I got it back a month ago because I refloxed through eating meat, but after a week of yellow stained body parts, I am doing pretty well pain wise now and don’t put it on anymore.
I’m working on the depersonal yucky part now. If I didn’t have this site to look at, I would be so sad right now 🙂 🙂 🙂 Don’t worry everyone, it’ll be all right!
KEL, CP, Jordan – Thank you for your comments. As I mentioned I am two and a half years out, and was hit hard in the beginning. I’m mystified by the change in my body tissue. One week of kick scooting has caused a relapse of acute Achilles tendonitis and now plantar fascitis. I have to work from home for four weeks and am risking my job. he scary thing is not know what your limits are. Sometimes, you can feel good, but when you try to do something physical, you realize “nope, my tissue” can’t take it. Other times, you pursue an activity, and after day 3 you fall apart like a house of cards with a convalescence of months.
The darn nerve symptoms persist. This is now the third fall in a row where I get very cold extremities.
CP – Hope you’re right about the general course of this toxicity. However, I know folks who are 7 years out and still dealing with it.
Hi Angie,
I am so glad you chose not to go down that route, as Plaquenil is in the quinolone ‘ family ‘ , and considered a cousin of the FQs, The eye damage is the better known ADR overall , but it can cause also cause various other numerous ADRs, many of them are unfortunately very familiar to us.
http://webeye.ophth.uiowa.edu/eyeforum/cases/139-plaquenil-toxicity.htm
not sure what to do… the pain and burning in my upper hamstrings is really bad.. I can’t even bring my knees to my chest.. should I try to stretch them? Or will that just make it worse? I used to be able to stretch and touch my palms to the floor, now I can barely lean forward as it is so painful. Prior to floxing I could do stretches and some yoga poses, now I can’t seem to do either.
Hey gang my parents just recently went to the optometrist to get their eyes checked to see if they needed new glasses. Their eye doc asked if they had any medical allergies. Well since my floxing they always put fluoroquinolones. Their doc asked about this and they explained the whole cipro and levaquin thing. Antibiotics with fluoride in them. The optometrist told them ok then said I don’t know if you are aware of this but almost all eye drops have fluoride
in them, including the ones they us to check the pressure in their eyes.
Just FYI.
i dont know what id do without this site…….i never got to see them but did you guys ever view the healing stories from the old yahoo forums i heard there was hundreds on there? ……;)
Hi Michael,
The fluorine is actually not thought to be the main reason we are so damaged, as the original Quinolones before the fluorine- carbon bond was attached to the pharmacore, ALSO caused a lot damage, very similar injuries , they actually hurt many people, subsequently a lot of them were actually withdrawn from the market. The original Quinolone compound, btw, on which ALL Quinolones/FQs are based is Nalidixic acid, which was approved in 1962, this is a known listed documented carcinogen.
The Quinolone family as a whole are indeed nasty drugs, the anti malarial cousins to the FQs such as Larium, Plaquenil etc, ALSO carry the potential to cause severe ADRs, again many familiar to us.
Fluorine is added to drugs, in order to make them more potent ( i.e. toxic) & of course also to save money for Big Pharma, as then less of the active ingredient is then actually needed. This in the FQs, is in a form of a carbon-fluorine bond. Adding the fluorine allows far greater penetration into every organ, every cell of the body , including of course far easier crossing of the blood-brain barrier. In Some fluoridated drugs. for example, inhaled General anaesthesia, the Carbon- fluorine is known to destabilise , & if this occurs the fluorine is then metabolised into free fluoride -ion in the liver. A sign of this occurring is the raising of the the serum fluoride level in the blood, this is suspected to happen with the FQs, when a paediatric study was carried out with a single pill of Cipro, this showed a 12 hour rise in serum fluoride levels, & subsequent excretion of fluoride in the urine some hours later. The fluorine added to the FQs imo certainly adds to the severity of our ADRs, & IMO, is also a reason behind why the majority of the fluoridated drugs, i.e. the psychotropics / statins for example ALSO have such severe potential ADRs, & IMO, is also a contributory factor behind the noted cognitive decline in the elderly which can then often later lead to dementia , also the learning difficulties which are showing up in children, who have had to go under anaesthesia numerous times at a young age.
The fluorine added to the FQs, although not thought to be the main reason for our injuries, why we are so damaged, IMO is certainly a major contributing factor to the severity of them & I believe it has a LOT to answer for .
Hey @ all,
Is here anyone who’s taking Iodine supplements and/or eating a lot of iodine containing food?
Mark
Hi everyone. Finally decided to post my experience with Cipro. Is there a light at the end of this tunnel?
My experience:
About 5 months ago I came down with a bad stomach bug in Mexico that sent me to the hospital. Was put on an IV and recovered in a few hours. Doctor prescribed Cipro. Got home from the doctor and rested for several hours.
Then I took my first dose of Cipro – just 1 pill. About 30 minutes later I started to get a slight tremor throughout my body. The tremor gradually increased. It was a frightening experience. I felt like I had adrenaline running through my veins but no way to get rid of it. Turns out (though I didn’t realize it at the time) that I was having symptoms of anxiety and panic attack. Needless to say, I stopped taking Cipro immediately. Not one more pill. Yet the symptoms have continued in some degree ever since.
So, here I am, 5 months later and still having symptoms with anxiety/panic. I don’t ever have a full blown panic attack like that first night, but every morning I still wake up with nausea and jitters. It’s just “uncomfortable” and my days are not enjoyable like they used to be. That’s the best way to describe my life at the moment: “uncomfortable”. I also have a host of stomach issues that seem to accompany the anxiety, but after careful experimentation with various drugs (Imodium/Xanax), it seems that the stomach issues are caused by the anxiety and not the other way around.
My doctor prescribed Xanax in case I need it, but I’m “right on the border” of taking it regularly. Part of me hopes that this issue will go away on it’s own. The other part tells me that I should take whatever I need to feel better, no matter the potential long-term damage (addiction/dependence).
Has anyone else had to deal with long term anxiety/panic from taking Cipro? Is there a tried and true method to expedite recovery time? I feel like I’m improving, but it’s just going so damn slow. I’m 29 and in perfect health (aside from this), so I would think that my recovery should be relatively fast. But after 5 months I’m still having symptoms. This seems too long. Far too long. Keep in mind that I’ve never had any neurological, psychiatric or psychological problems before Cipro. So I’m in new territory here – a stranger in a strange land, so to speak. Any help would be appreciated. Thank you all, kindly.
It seems like after reading many posts/comments, that people have more of an immediate reaction to a FQ (within days of the pills) rather than a delayed one . For me, after having been floxed numerous times, and connecting many dots, the pain got worse each time I was given Cipro *yet, I didn’t know it was from the Cipro) and then the last time I took Cipro (last November) is when all hell broke loose. I believe I took Cipro in summer 2009 and then noticed pain in about December 2009. I tried to remember when I first start feeling pain many years ago, and it seems like the pain escalated about 4-5 months AFTER taking Cipro. Is it possible for a reaction to begin a few months later? Unfortunately, I have taken Cipro many times since 2009 – the last time Nov 2013 when my pain reached level 10. I have since tried to remain positive but it has been a really rough year for me. It is driving me crazy trying to remember when all the pain began – and finding out if it all corresponded to when I was given Cipro again.
I had to take Azithromycin.Ive been sitting on it for over a week.Terrified but decided I had to take it.So I did.4 hours ago.
So far so good.I cant tell you how panicked I was.This is actually the only antibiotic I was able to safely take before floxing but wasnt sure how id react after.
Least I know I am still ok with it.
I did get a slightly tight throat but I think that was more anxiety than anything else.
phew!!!!
Great. Now they’re coming up with new poisons to deal with FQ-resistant bacteria. I didn’t understand most of this, but I like how they refer to the new quinazolinediones as “topoisomerase poisons.”
does anyone take antioxidant N-acetyl-L-cysteine (NAC)? is it something that might help floxies?
Thanks on your marvelous posting! I really enjoyed reading it,
you could be a great author.I will be sure to bookmark your
blog and may come back in the foreseeable future.
I want to encourage that you continue your great job, have a nice holiday weekend!