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B
10 years ago
Just one quick thought: avoid stressful, upset, or angry situations as much as possible ….
“Many patients report stressful situations in their life in correlation with the beginnings of pain, which may contribute to the symptoms.” — http://en.wikipedia.org/wiki/Tendinosis
My worst reaction to FQ happened at 3 months after FQ, half month after NSAIDs, 1 day after a stressful condition. I am not sure which of the above three contributed most to the worst reaction.
just FYI… Anyway, try to be positive and to enjoy inner peace is not bad idea.
Hope we all heal.
Bo
Nancy Kai
10 years ago
I want to thank you for putting together this site. I was athletic and an avid outdoors-person before taking cipro. I would like to post more but it is hard to even keyboard. And I want to read more first too but my vision is not very good now (Still need to have that checked.) My achilles tendon is ruptured so the orthopedic surgeon says the MRI shows and he is certain surgery will repair it but my wrists and shoulders are so bad I can’t use crutches or a walker. My physical therapist tried to make those work for me but it was a big fail. So I will have to go into a nursing home for two months after the surgery (For heaven’s sake I am not even close to being old enough to need a nursing home) 🙁 I look forward to reading more and finding hope. The worst part about all this is I used to run in the forests here. I did photography and ran with my back pack filled with camera equipment and bottles of water and now I can barely walk to my bathroom. I wish I would stop dreaming about running in the forests. The dreams are so real. I feel the breeze on my face, my hair is blown away from my face and I am so happy. And then I wake up. I just wish I would stop dreaming. I was given cipro for black fly bites on my legs that a doctor “noticed”. I wasn’t even being seen for the bites. It has been two years of misdiagnosis and “waiting to heal”. But I will not give up.
Dean
10 years ago
I have a question for you all!
Have any of you had chest pain or a pain in the sides (kidneys)? I have both occasionally and it really scares me!
Any help would be great!
Diego
10 years ago
Dean yes it is a bit scary and it feels like something is wrong with with the heart but it is more the muscles and nerves. Mine has gotten a lot better. I have had 3 EKG and they all are normal and indicate a very healthy heart. I believe it is all tissue, muscles, etc… that will contiue to heal every day. Accupuncture helped me ease the chest pain and tightness. Oh and yes it feels like something is wrong with the kidneys but it is more muscle related around the kidneys. I had a test done and my kidneys are working well. You will be fine Dean! You will get better!
I have been thinking about cell death a lot lately.
As far as i understand, when one cell is dead and lose it’s ability to regenerate new ones, that’s when trouble brews- one is unable to recover. thats where my holistic doctor want me to seriously think about and not get too upset over my floxing situation. one way is use of mega antioxidant. the rest…up to god will? duh! what a sick crisis we are put in for nothing. we are made healthy and is already healthy but we destroyed them with FQ unknowingly.
I know you stand up very strong for mitochondrial topic. is cell regeneration or cell death got anything to do with mitochondrial? i guess both are related somehow since it’s about oxidative stress damage on top of energy depletion from mitochondrial disease.
does it mean mitochondrial improvement leads to better cell recovery?
do you think those marketed as “cell food’ is scam?
some floxie get well with ozone therapy. feeding cells with oxygen. but there again, some get worser.
Jarene
cd
10 years ago
Hello again everyone.
Well I had an mri on my achilles tendon last friday so just awaiting the result s. My pain is at the insertional part of the tendon to the heel and only come on 3 months after my reaction.It gets painful when iI’m on my heels for a while. God I hope this gets better! My elbows are still tender from lifting some weights 3 weeks ago and know have pains in my hands which resolved in the first three months but back now 🙁 I thought my top half was cured obviously my tendons are still weak.. anyway ive had a lady message me on fb from Italy and her husband was affected for 12 months but after taking glutathione by IV he’s now fully recovered. Has anyone any experience of using this antioxidant? Are there any side effects one should be concerned about and also how would you go about getting access to this treatment in the UK?
All the best to u all.
Chris
Amy
10 years ago
Did anyone get a stomach virus while trying to recover? I caught a bad bug and joints hurt so bad all over again!
B
10 years ago
@all
Q: Anyone know about some Iphone/Android APP that we can customize it and use it to track
— A, what we took today
— B, how do we feel today
–30 days later the APP yields some monthly summary, like a chart, a correlation between A and B ?
We discussed a lot on the supplements. Are their any long term relation between what we took and how we feel ?
If we have some tool to help us to track, to summarize, and to do a “data mining”.
cheers
Bo
Andrew
10 years ago
Hello – took Cipro about 6 weeks ago and into day three of a 7 day prescribed cycle, my lower back froze up to the point I couldn’t stand. My kinseologist diganosed it as a sprained pelvis and has helped me a great deal. Still painful but I am up and about and at work etc. About a month after this I had some real pain in my achilles, around the inner ankle bone. He attributed it to the sprained pelvis as it was throwing off my gait. But about two weeks ago I started having a humming sensation in both ears, but mostly my right ear. it comes and it goes. Of course like everyone here I have read all the horror stories about what thes drugs can do and how they can attack the nerves in the hairs of the ears etc, of course as well as ligaments. I am doing magnesium oil, magnesium, wheat grass amongst many other things as I have transverse myelitis so I need to take all the good stuff for imflammation. The ear ringing at this point is really bugging me and owndering if anyone has some suggestions.
B
10 years ago
FYI: people in United States, especially CA,
It seems some specialist “Dr Cohen” can provide help.
“Dr. Cohen provides office or telephone consultations for people sustaining FQ reactions. If you would like to schedule an appointment, please call the office at 858-345-1760.” –> http://www.jaycohenmd.com/fluoroquinolone.html
B
10 years ago
@R
FYI: people in Vancouver, Canada
(that is just R and me I guess)
Professor Mahyar Etminan may be helpful.
question for you guys. Does anyone believe that these pharmaceutical companies would be able to find a cure for us if given a financial stimulus? Also, if pharmaceutical companies will not help mitigate the disaster they have done to so many, how do we get the politicians and lawmakers to act? Must members of their own families become injured for them to act? I am at a loss. Clearly the top officials must be aware, some of them must have been injured.
Catherine
10 years ago
Is there a connection between floxing and hypoglycaemia, and can anything be done about it?
nick
10 years ago
Just felt like posting some exercise progress. Physical therapist has been stretchinv my calfs which i dont really like. On top of doing elliptical it has been making the calf mus le really sore down deep in muscle. Walking daily, gone up to 1 hr. Listen to motivational music while doing it. Did pushups today first time in 2 months. Not bad buf tried doing tricep work and got deep musvle cramp in tricep too painful. Hoping the calf pain clears up soon.
I mentioned before that I was going to consider Platelet-Rich Plasma therapy. PRP ‘evolved’ from prolotherapy. My Dad had it to fix his tennis elbow. I’m going to see a doctor who does PRP next week. If he thinks it’ll be beneficial for me and I decide to get it I’ll definitely let everyone know how it goes.
My problems are mostly joint related. I took avelox in January with no noticeable effects. My left knee was very sore after a couple 5k runs in March. Then my right knee became sore (also the skin on my kneecaps became very sensitive and easily irritated – this is gone now). I then developed leg weakness in both legs which is also gone now. Then I noticed other joints (elbow, wrist) becoming a little sore. Finally, my achilles are giving me the most problems now.
Catherine
10 years ago
Does anyone else have the feeling like every muscle in their body is “tight”, so that the whole body feels like lead? It is not exactly painful, but extremely uncomfortable, and becomes painful if I try to use my muscles. It is this symptom which has left me so disabled – I can’t sit up because my body is just too heavy. Anybody know what causes this, and if it is likely to get better?
Anum
10 years ago
really like what john said and im glad we have support network amongst ourselves and special.thanks to people who create the platform for these discussions and help.
B
10 years ago
Question ———— DMARD ————
Hi @guys
Who knows about DMARD ? My rheumatologist told me that he knows about FQ toxity and recommended me to try DMARD 3 months ago, but I was really afraid of any prescribed drugs and refused to take it at that moment.
I am going to follow up with him again by the end of this month (April 31th 2014), and we will talk about DMARD again.
I did some research myself, but did not find much information, except :
I 95% will not take the DMARD even if my rheumatologist recommends it again, but I wish to collect some information from here, in case you guys may heard of it or even had tried it.
—————-
As far as I know, doctors mostly give floxies the 3 following drugs
NSAIDs
DMARD
Steroid
We already read reports that floxies should avoid NSAIDs and Steroid. As for DMARD, I did not see much reports from floxies or from literatures.
Thanks
Bo
Nick
10 years ago
Does anyone know how to find the real number of fluoroquinolone induced achilles ruptures?
In one of myy posts this morning, I’ve acvidentally pasted what i wrote on the surviving Cipro site. I didn’t mean to – I copied it to save it, not to post it here, slap in the middle of reply! Please just skip over it. Thanks.
Just one quick thought: avoid stressful, upset, or angry situations as much as possible ….
“Many patients report stressful situations in their life in correlation with the beginnings of pain, which may contribute to the symptoms.” — http://en.wikipedia.org/wiki/Tendinosis
“…. such as being chased by a bear….. Release of Steroid Hormones and the Stress Hormone Cortisol”
— http://www.nytimes.com/health/guides/symptoms/stress-and-anxiety/the-body's-response.html
My worst reaction to FQ happened at 3 months after FQ, half month after NSAIDs, 1 day after a stressful condition. I am not sure which of the above three contributed most to the worst reaction.
just FYI… Anyway, try to be positive and to enjoy inner peace is not bad idea.
Hope we all heal.
Bo
I want to thank you for putting together this site. I was athletic and an avid outdoors-person before taking cipro. I would like to post more but it is hard to even keyboard. And I want to read more first too but my vision is not very good now (Still need to have that checked.) My achilles tendon is ruptured so the orthopedic surgeon says the MRI shows and he is certain surgery will repair it but my wrists and shoulders are so bad I can’t use crutches or a walker. My physical therapist tried to make those work for me but it was a big fail. So I will have to go into a nursing home for two months after the surgery (For heaven’s sake I am not even close to being old enough to need a nursing home) 🙁 I look forward to reading more and finding hope. The worst part about all this is I used to run in the forests here. I did photography and ran with my back pack filled with camera equipment and bottles of water and now I can barely walk to my bathroom. I wish I would stop dreaming about running in the forests. The dreams are so real. I feel the breeze on my face, my hair is blown away from my face and I am so happy. And then I wake up. I just wish I would stop dreaming. I was given cipro for black fly bites on my legs that a doctor “noticed”. I wasn’t even being seen for the bites. It has been two years of misdiagnosis and “waiting to heal”. But I will not give up.
I have a question for you all!
Have any of you had chest pain or a pain in the sides (kidneys)? I have both occasionally and it really scares me!
Any help would be great!
Dean yes it is a bit scary and it feels like something is wrong with with the heart but it is more the muscles and nerves. Mine has gotten a lot better. I have had 3 EKG and they all are normal and indicate a very healthy heart. I believe it is all tissue, muscles, etc… that will contiue to heal every day. Accupuncture helped me ease the chest pain and tightness. Oh and yes it feels like something is wrong with the kidneys but it is more muscle related around the kidneys. I had a test done and my kidneys are working well. You will be fine Dean! You will get better!
Hi Lisa and friends,
I have been thinking about cell death a lot lately.
As far as i understand, when one cell is dead and lose it’s ability to regenerate new ones, that’s when trouble brews- one is unable to recover. thats where my holistic doctor want me to seriously think about and not get too upset over my floxing situation. one way is use of mega antioxidant. the rest…up to god will? duh! what a sick crisis we are put in for nothing. we are made healthy and is already healthy but we destroyed them with FQ unknowingly.
I know you stand up very strong for mitochondrial topic. is cell regeneration or cell death got anything to do with mitochondrial? i guess both are related somehow since it’s about oxidative stress damage on top of energy depletion from mitochondrial disease.
does it mean mitochondrial improvement leads to better cell recovery?
do you think those marketed as “cell food’ is scam?
some floxie get well with ozone therapy. feeding cells with oxygen. but there again, some get worser.
Jarene
Hello again everyone.
Well I had an mri on my achilles tendon last friday so just awaiting the result s. My pain is at the insertional part of the tendon to the heel and only come on 3 months after my reaction.It gets painful when iI’m on my heels for a while. God I hope this gets better! My elbows are still tender from lifting some weights 3 weeks ago and know have pains in my hands which resolved in the first three months but back now 🙁 I thought my top half was cured obviously my tendons are still weak.. anyway ive had a lady message me on fb from Italy and her husband was affected for 12 months but after taking glutathione by IV he’s now fully recovered. Has anyone any experience of using this antioxidant? Are there any side effects one should be concerned about and also how would you go about getting access to this treatment in the UK?
All the best to u all.
Chris
Did anyone get a stomach virus while trying to recover? I caught a bad bug and joints hurt so bad all over again!
@all
Q: Anyone know about some Iphone/Android APP that we can customize it and use it to track
— A, what we took today
— B, how do we feel today
–30 days later the APP yields some monthly summary, like a chart, a correlation between A and B ?
We discussed a lot on the supplements. Are their any long term relation between what we took and how we feel ?
If we have some tool to help us to track, to summarize, and to do a “data mining”.
cheers
Bo
Hello – took Cipro about 6 weeks ago and into day three of a 7 day prescribed cycle, my lower back froze up to the point I couldn’t stand. My kinseologist diganosed it as a sprained pelvis and has helped me a great deal. Still painful but I am up and about and at work etc. About a month after this I had some real pain in my achilles, around the inner ankle bone. He attributed it to the sprained pelvis as it was throwing off my gait. But about two weeks ago I started having a humming sensation in both ears, but mostly my right ear. it comes and it goes. Of course like everyone here I have read all the horror stories about what thes drugs can do and how they can attack the nerves in the hairs of the ears etc, of course as well as ligaments. I am doing magnesium oil, magnesium, wheat grass amongst many other things as I have transverse myelitis so I need to take all the good stuff for imflammation. The ear ringing at this point is really bugging me and owndering if anyone has some suggestions.
FYI: people in United States, especially CA,
It seems some specialist “Dr Cohen” can provide help.
“Dr. Cohen provides office or telephone consultations for people sustaining FQ reactions. If you would like to schedule an appointment, please call the office at 858-345-1760.” –>
http://www.jaycohenmd.com/fluoroquinolone.html
@R
FYI: people in Vancouver, Canada
(that is just R and me I guess)
Professor Mahyar Etminan may be helpful.
“In an interview, Mahyar Etminan, a pharmacological epidemiologist at the University of British Columbia, said the drugs were overused “by lazy doctors who are trying to kill a fly with an automatic weapon.” –>
http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_php=true&_type=blogs&_r=0
http://www.cfri.ca/our-research/researchers/results/Details/mahyar-etminan
question for you guys. Does anyone believe that these pharmaceutical companies would be able to find a cure for us if given a financial stimulus? Also, if pharmaceutical companies will not help mitigate the disaster they have done to so many, how do we get the politicians and lawmakers to act? Must members of their own families become injured for them to act? I am at a loss. Clearly the top officials must be aware, some of them must have been injured.
Is there a connection between floxing and hypoglycaemia, and can anything be done about it?
Just felt like posting some exercise progress. Physical therapist has been stretchinv my calfs which i dont really like. On top of doing elliptical it has been making the calf mus le really sore down deep in muscle. Walking daily, gone up to 1 hr. Listen to motivational music while doing it. Did pushups today first time in 2 months. Not bad buf tried doing tricep work and got deep musvle cramp in tricep too painful. Hoping the calf pain clears up soon.
I mentioned before that I was going to consider Platelet-Rich Plasma therapy. PRP ‘evolved’ from prolotherapy. My Dad had it to fix his tennis elbow. I’m going to see a doctor who does PRP next week. If he thinks it’ll be beneficial for me and I decide to get it I’ll definitely let everyone know how it goes.
There are a lot of articles about it online. Here are a few:
http://www.aaos.org/news/aaosnow/mar10/clinical2.asp
http://www.scientificamerican.com/article/platelet-rich-plasma-therapy-dennis-cardone-sports-medicine-injury/
http://www.aaos.org/news/aaosnow/sep10/clinical2.asp
My problems are mostly joint related. I took avelox in January with no noticeable effects. My left knee was very sore after a couple 5k runs in March. Then my right knee became sore (also the skin on my kneecaps became very sensitive and easily irritated – this is gone now). I then developed leg weakness in both legs which is also gone now. Then I noticed other joints (elbow, wrist) becoming a little sore. Finally, my achilles are giving me the most problems now.
Does anyone else have the feeling like every muscle in their body is “tight”, so that the whole body feels like lead? It is not exactly painful, but extremely uncomfortable, and becomes painful if I try to use my muscles. It is this symptom which has left me so disabled – I can’t sit up because my body is just too heavy. Anybody know what causes this, and if it is likely to get better?
really like what john said and im glad we have support network amongst ourselves and special.thanks to people who create the platform for these discussions and help.
Question ———— DMARD ————
Hi @guys
Who knows about DMARD ? My rheumatologist told me that he knows about FQ toxity and recommended me to try DMARD 3 months ago, but I was really afraid of any prescribed drugs and refused to take it at that moment.
I am going to follow up with him again by the end of this month (April 31th 2014), and we will talk about DMARD again.
I did some research myself, but did not find much information, except :
1, some specific type of DMARD may contradict with fluro —>
http://www.barnsleyccg.nhs.uk/Downloads/Members/Medicines%20management/Shared%20care/DMARD_SCG_Barnsley_Feb_2013FINALV2.docx
2, DMARD may yield side effects when it is stopped —>
http://en.wikipedia.org/wiki/Disease-modifying_antirheumatic_drug#Alternatives
I 95% will not take the DMARD even if my rheumatologist recommends it again, but I wish to collect some information from here, in case you guys may heard of it or even had tried it.
—————-
As far as I know, doctors mostly give floxies the 3 following drugs
NSAIDs
DMARD
Steroid
We already read reports that floxies should avoid NSAIDs and Steroid. As for DMARD, I did not see much reports from floxies or from literatures.
Thanks
Bo
Does anyone know how to find the real number of fluoroquinolone induced achilles ruptures?
In one of myy posts this morning, I’ve acvidentally pasted what i wrote on the surviving Cipro site. I didn’t mean to – I copied it to save it, not to post it here, slap in the middle of reply! Please just skip over it. Thanks.