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Brandon
10 years ago
Hello everyone. Could you tell me whether physiotherapy tends to 1) be beneficial or 2) make things worse! I have not tried it yet, and my tendonosis seems to be worsening not improving, in my calves and in my hips. I am almost six months out. I can walk (I have heel lifts) but my window of activity seems to be shrinking. Any suggestions/thoughts gratefully received.
Thanks,
Brandon
theman77
10 years ago
Thank you Lisa.
Everybody, this is your chance to make yourself heard! Tell your story on EAAD 2014 Facebook site
I personally believe Floxing is an immunological illness that is triggered by Fluoroquinolones, just like a Chlamydia infection can trigger Reactive Arthritis. I am suspicious there are antibodies that are circulating our blood, but we can’t detect them, because we don’t know what we are looking for, but they are out there. ANA in blood tests seems to be a common pattern. If in fact, it is an immunological illness there is hope. Just a quick survey: how many of you know your ANA status?
Brandon
10 years ago
Ok, everyone. Have you tried glutathione (either liposoma or I.V.)? If so, did it make you better, worse, or neither.
Rob
10 years ago
I was floxed around 3 months ago after a course of Naproxen followed by Ciprofloxacin. My symptoms only really came on after finishing the course. The first thing I noticed was an extreme feeling of fatigue way beyond normal tiredness, to the point that I had fleeting moments of worrying about whether this was the start of something life threatening (and I am not a dramatic person).
The muscle twitches all over my body came next and lasted for weeks. This then progressed to weakness in my arms and legs and pain in my legs. The weakness would get worse over the course of a day which I assume was my tendons being stretched out over the day due to being wrecked by the Cipro. I also had athritic-type pains in my joints – ankles, knees, hips, wrists, elbows, shoulders. Of course at this point I had no idea what could be wrong and so didn’t realise I might be better off resting the weakened tendons at least until the worst of it was over.
My skin thinned noticeably and has lost much of its elasticity such that I can pull on it and it stretches in a way it never used to. I was getting ulcers in my mouth and welts and rashes on my skin simply from the contact of clothing and sleeping was not easy as a result. I became hoarse and virtually lost my voice for around a month. I had to leave work one day because sitting on a normal chair caused such pain in my hamstrings. I took a whole week off work and had another week working from home because I was so wrecked.
I noticed that my eyes became sore and I woke up once after lying with my face on the pillow with blurred vision in my left eye and this took around 30 minutes to go back to normal. This happened again after I used a contact lens so I have now stopped using them completely.
I used to work out and have not been able to since being floxed but have noticed my muscles have atrophied significantly more than when I usually take time out from training.
So a really scary list of problems and I was pretty terrified for the future at one stage. Happily though, I seem to be recovering slowly. My tendons are much improved with the weakness mostly gone. The pain in my joints seems to be disappearing. I don’t get pain in my muscles simply from putting weight on them any more. My skin has not recovered its elasticity, but the scary welts and rashes are gone and my eyes are better. There are fewer and fewer muscle twitches – pretty much gone.
I took a stack including a bunch of antioxidants as recommended by my doctor to try to help rev up my mitochondria and altered my diet:
-multivitamin high in ACE
-kelp for iodine
-calcium
-fish oil
-Coenzyme Q 10 (for some reason I think this alone made a huge difference)
-whey protein
-fresh fruits, berries, vegetables
-plenty of milk and eggs
-very high cocoa content chocolate (> 80%)
I don’t know whether this helped, but it certainly didn’t seem to hurt and if nothing else the placebo effect might have contributed.
So please if you are in the middle of the worst symptoms and worrying about the future, have hope!! Never underestimate the body’s powers of recovery. Around 8 weeks ago I felt like death and could barely walk and now I am just starting to hop up stairs again albeit very carefully. And whilst I still feel extremely tired at times the difference is amazing. So keep your chin up!
A final word – I have experienced some softening of the cartilage of the ears and nose and the only disease I have found that causes these symptoms is an auto immune disease called Relapsing Polychondritis. I am hoping that I will be lucky and that these symptoms will wear off without leaving too much damage just as the other symptoms have. I mention this just in case RP is a really rare side effect of Cipro and someone else might be searching for Cipro and Relapsing Polychondritis together. However it could just be a complete coincidence that the RP (if that’s what I have) manifested at the same time as being floxed. I am seeing an specialist so fingers crossed and since I am in the UK I’m not faced with a bill for thousands in order to get the care I need.
Holy shit I’m so glad you commented on my FB page. I’m pretty sure I was poisoned in this way back in primary school. I had glandular fever, but for an entire year, doctors had absolutely no idea what was going on. They thought I was just getting infection after infection, and so, for that entire year, I was being prescribed antibiotics almost every month. Was playing competitive tennis, too, so while I had gland, was training bout six days a week. Finally went to the hospital after randomly passing out one day. They said that I HAD glandular fever, but was now recovering from it. It fucked up my immune system no end. Developed chronic fatigue five years later in high school. Still gets me now, ten years later. Probably exacerbated depression (which was there from toddler age-ish). Thanks for this website. Will stalk around when I’ve got a bit more time. My g/f has fibro. She’ll probably get something out’ve it too.
rich
10 years ago
ROB your story mimicks mine im in month 3 nearly… after 12 cipro…….same symptoms… did you get bruises on legs….loss of padding on feet…….blue veins becoming more see through all over body?
rich
10 years ago
😉
rich
10 years ago
the padding is weird its like im just standing on veins bahh… I hope it don’t take too many months to come back…..yea the see through thing is weird im like a blue network of veins now
“We don’t know a millionth of one percent about anything.”
Thomas A. Edison
We really don’t. We are in a constant state of learning. In a sea of different opinions and theories.
I so wish I had a sonic screw driver that I could fix myself out of selfish self preservation. Then I would fix all of you. Enough science fiction.
But the idea is correct. Nikola Tesla said “If you want to find the secrets of the universe, think in terms of energy, frequency and vibration.” and Einstein said “Everything in life is vibration.”
When we take in medicines or herbs or supplements they are vibrations really.
That is why I am a firm believer in Electromagnetic Therapy. Rife machines, PEMF machines,even the TENS machines. I personally have been using them lately with some promising results. Remember though, not all machines are created equal.
Here are some guides if you are thinking about trying these.
“The doctor of the future will give no medication, but will interest his patients in the care of the human frame, diet and in the cause and prevention of disease. ~ ”
― Thomas A. Edison
Hang in there Gang! Find something that works for you.
Mike Out.
Carrie
10 years ago
I need to clear my thoughts on this, as I am not sure I am understanding a lot of the FQ stuff.. My pain started about 4.5 years ago. The pain began about 4-5 months after taking Cipro for a UTI… It was horrible pain, especially when sitting – it was as if there were hot coals on my toosh tendons – right side only. Then it began on the other toosh tendons. It hurts more when I sit, hurts more when I do any kind of stretching whatsoever.. other symptoms began.. heart palpatations, insomnia, dry skin, dry eyes, terrible pains, burning skin, pelvic floor spasms, popping joints, rib pains, weakness, hip pain… month after month and year after year it continued. During the past 4.5 years I saw my primary doctor, a neurologist, a cardiologist, my gyn, a pelvic pain specialist, a pain management doc, when to PT, was sent to Stanford even.. none of whom helped me. My neurologist basically stated that it was idiopathic nerve pain. They gave me Lyrica, Cymbalta, other SSRI’s, pain meds, etc.. nothing worked. During those 4.5 years, I had been given Cipro and/or Levaquin for UTI’s and sinus infections (approx. 96 pills of FQ’s). YET, I did not know about floxing until earlier this year. My last floxing in Nov 2013, was when I reached my FQ threshold – as my pain level was a 10. I almost drove myself to the hospital. This is when my neurologist did another MRI, yet there was nothing on the MRI that could explain the horrible pain I was experiencing. So now, 11 months later, and obviously never taking a FQ again, I would have thought that I would be feeling better by now.. I am still trying to remain positive.. but the fear of never feeling better has taken over all of my thoughts. Am I just not giving it enough time yet? Is it possible too much damage has been done by the FQ? I know that this is what is wrong with me – I have been to many doctors, and have had many blood tests – everything has been ruled out.
Daniela
10 years ago
I had a period of veins being frighteningly prominent, also prune fingers. They’re better now.
ANA neg
Celiac neg but high (after one year of no grains, which helped GI issues immediately)
Sed rate slightly higher than normal
EBV positive past infection
Rheumatoid slightly higher than cut off for normal
Lyme two bands, one of which is common to most people
Anyhow, I’m not only gluten-free but doctor-free so I’m not getting any more tests.
CP
10 years ago
How many people here were prescribed steroids or other immune suppressing agents? Did you notice any improvement in your symptoms while using the immuno-suppresive agents?
My toxicity happened in March. It has taken a long time and a lot of work and tears but I have been improving steadily since having chiro/PT therapy. I was getting almost back to normal aside from the weight I have gained will NOT budge. In attempts to lose it – I have been on a strict diet and exercising more than I had been. And suddenly today I have a muscle spasm in my back, my forearm will not stop twitching (this happened all of the time when at my worst), my head is killing me and my calf is aching (peripheral neuropathy was my worst symptom after the toxicity but has been nearly resolved).
I don’t know if I am just having a bad day or if maybe the dieting/exercising is realizing some of the AB into my blood stream?? I had PVCs/PACs and SVT prior to everything. But it has also gotten worse in the past couple of weeks.
Its like I am just not allowed to feel well for five friggin minutes. I am so frustrated!!!!
Kel
10 years ago
Was digging on the Net a bit ago. I have been confused from the beginning and still am but it’s alright I have had a lot of ambiguity with Doctors, Medications and answers in my life. Really if you think about it, precision is rare. Some things are tough to answer. I have taken a ton of Prescriptions from Antibiotics and Psych Drugs. Never had a long lasting effect from any of them that I could narrow down to just one drug. Maybe smoking asthma(which is well known) I had medical conditions before and after this and honestly this has to be one of the worst experiences I have ever had with a prescription. Quite a brief adventure too. At least the smoking gives you back a base human pleasure and you pretty much are aware of it’s side effects. People stop digging through their RX side effects, after a few dozen prescriptions. Though lately I have been turning away from Prescriptions seeing all the damage they do to people. Most of the time that is from Cancer Drugs and Pain Killer Addiction. Nothing as soft core as treating a baby infection for a month or less.
Daniela
10 years ago
Taking garlic knocks out the flu, rubbing on turmeric powder heals aches, boric acid terminates a yeast infection immediately. But every doctor I’ve seen is opposed to all of those things and insists on pharma with side effects.
Hello all
I may need to have a biopsy of a mark on my face. I’m concerned about the effect of local anaesthetic on my flox symptoms. Is there any specific anaesthetic I should avoid/recommend?
Hello everyone. Could you tell me whether physiotherapy tends to 1) be beneficial or 2) make things worse! I have not tried it yet, and my tendonosis seems to be worsening not improving, in my calves and in my hips. I am almost six months out. I can walk (I have heel lifts) but my window of activity seems to be shrinking. Any suggestions/thoughts gratefully received.
Thanks,
Brandon
Thank you Lisa.
Everybody, this is your chance to make yourself heard! Tell your story on EAAD 2014 Facebook site
https://www.facebook.com/EAAD.EU
I personally believe Floxing is an immunological illness that is triggered by Fluoroquinolones, just like a Chlamydia infection can trigger Reactive Arthritis. I am suspicious there are antibodies that are circulating our blood, but we can’t detect them, because we don’t know what we are looking for, but they are out there. ANA in blood tests seems to be a common pattern. If in fact, it is an immunological illness there is hope. Just a quick survey: how many of you know your ANA status?
Ok, everyone. Have you tried glutathione (either liposoma or I.V.)? If so, did it make you better, worse, or neither.
I was floxed around 3 months ago after a course of Naproxen followed by Ciprofloxacin. My symptoms only really came on after finishing the course. The first thing I noticed was an extreme feeling of fatigue way beyond normal tiredness, to the point that I had fleeting moments of worrying about whether this was the start of something life threatening (and I am not a dramatic person).
The muscle twitches all over my body came next and lasted for weeks. This then progressed to weakness in my arms and legs and pain in my legs. The weakness would get worse over the course of a day which I assume was my tendons being stretched out over the day due to being wrecked by the Cipro. I also had athritic-type pains in my joints – ankles, knees, hips, wrists, elbows, shoulders. Of course at this point I had no idea what could be wrong and so didn’t realise I might be better off resting the weakened tendons at least until the worst of it was over.
My skin thinned noticeably and has lost much of its elasticity such that I can pull on it and it stretches in a way it never used to. I was getting ulcers in my mouth and welts and rashes on my skin simply from the contact of clothing and sleeping was not easy as a result. I became hoarse and virtually lost my voice for around a month. I had to leave work one day because sitting on a normal chair caused such pain in my hamstrings. I took a whole week off work and had another week working from home because I was so wrecked.
I noticed that my eyes became sore and I woke up once after lying with my face on the pillow with blurred vision in my left eye and this took around 30 minutes to go back to normal. This happened again after I used a contact lens so I have now stopped using them completely.
I used to work out and have not been able to since being floxed but have noticed my muscles have atrophied significantly more than when I usually take time out from training.
So a really scary list of problems and I was pretty terrified for the future at one stage. Happily though, I seem to be recovering slowly. My tendons are much improved with the weakness mostly gone. The pain in my joints seems to be disappearing. I don’t get pain in my muscles simply from putting weight on them any more. My skin has not recovered its elasticity, but the scary welts and rashes are gone and my eyes are better. There are fewer and fewer muscle twitches – pretty much gone.
I took a stack including a bunch of antioxidants as recommended by my doctor to try to help rev up my mitochondria and altered my diet:
-multivitamin high in ACE
-kelp for iodine
-calcium
-fish oil
-Coenzyme Q 10 (for some reason I think this alone made a huge difference)
-whey protein
-fresh fruits, berries, vegetables
-plenty of milk and eggs
-very high cocoa content chocolate (> 80%)
I don’t know whether this helped, but it certainly didn’t seem to hurt and if nothing else the placebo effect might have contributed.
So please if you are in the middle of the worst symptoms and worrying about the future, have hope!! Never underestimate the body’s powers of recovery. Around 8 weeks ago I felt like death and could barely walk and now I am just starting to hop up stairs again albeit very carefully. And whilst I still feel extremely tired at times the difference is amazing. So keep your chin up!
A final word – I have experienced some softening of the cartilage of the ears and nose and the only disease I have found that causes these symptoms is an auto immune disease called Relapsing Polychondritis. I am hoping that I will be lucky and that these symptoms will wear off without leaving too much damage just as the other symptoms have. I mention this just in case RP is a really rare side effect of Cipro and someone else might be searching for Cipro and Relapsing Polychondritis together. However it could just be a complete coincidence that the RP (if that’s what I have) manifested at the same time as being floxed. I am seeing an specialist so fingers crossed and since I am in the UK I’m not faced with a bill for thousands in order to get the care I need.
Holy shit I’m so glad you commented on my FB page. I’m pretty sure I was poisoned in this way back in primary school. I had glandular fever, but for an entire year, doctors had absolutely no idea what was going on. They thought I was just getting infection after infection, and so, for that entire year, I was being prescribed antibiotics almost every month. Was playing competitive tennis, too, so while I had gland, was training bout six days a week. Finally went to the hospital after randomly passing out one day. They said that I HAD glandular fever, but was now recovering from it. It fucked up my immune system no end. Developed chronic fatigue five years later in high school. Still gets me now, ten years later. Probably exacerbated depression (which was there from toddler age-ish). Thanks for this website. Will stalk around when I’ve got a bit more time. My g/f has fibro. She’ll probably get something out’ve it too.
ROB your story mimicks mine im in month 3 nearly… after 12 cipro…….same symptoms… did you get bruises on legs….loss of padding on feet…….blue veins becoming more see through all over body?
😉
the padding is weird its like im just standing on veins bahh… I hope it don’t take too many months to come back…..yea the see through thing is weird im like a blue network of veins now
how much did you take rob
Has anyone here breaking out in hives?
“We don’t know a millionth of one percent about anything.”
Thomas A. Edison
We really don’t. We are in a constant state of learning. In a sea of different opinions and theories.
I so wish I had a sonic screw driver that I could fix myself out of selfish self preservation. Then I would fix all of you. Enough science fiction.
But the idea is correct. Nikola Tesla said “If you want to find the secrets of the universe, think in terms of energy, frequency and vibration.” and Einstein said “Everything in life is vibration.”
When we take in medicines or herbs or supplements they are vibrations really.
That is why I am a firm believer in Electromagnetic Therapy. Rife machines, PEMF machines,even the TENS machines. I personally have been using them lately with some promising results. Remember though, not all machines are created equal.
Here are some guides if you are thinking about trying these.
http://www.wikihow.com/Buy-a-Rife-Machine
http://pain.about.com/od/treatment/p/tens.htm
http://drpawluk.com/resources/buyers-guide/
“The doctor of the future will give no medication, but will interest his patients in the care of the human frame, diet and in the cause and prevention of disease. ~ ”
― Thomas A. Edison
Hang in there Gang! Find something that works for you.
Mike Out.
I need to clear my thoughts on this, as I am not sure I am understanding a lot of the FQ stuff.. My pain started about 4.5 years ago. The pain began about 4-5 months after taking Cipro for a UTI… It was horrible pain, especially when sitting – it was as if there were hot coals on my toosh tendons – right side only. Then it began on the other toosh tendons. It hurts more when I sit, hurts more when I do any kind of stretching whatsoever.. other symptoms began.. heart palpatations, insomnia, dry skin, dry eyes, terrible pains, burning skin, pelvic floor spasms, popping joints, rib pains, weakness, hip pain… month after month and year after year it continued. During the past 4.5 years I saw my primary doctor, a neurologist, a cardiologist, my gyn, a pelvic pain specialist, a pain management doc, when to PT, was sent to Stanford even.. none of whom helped me. My neurologist basically stated that it was idiopathic nerve pain. They gave me Lyrica, Cymbalta, other SSRI’s, pain meds, etc.. nothing worked. During those 4.5 years, I had been given Cipro and/or Levaquin for UTI’s and sinus infections (approx. 96 pills of FQ’s). YET, I did not know about floxing until earlier this year. My last floxing in Nov 2013, was when I reached my FQ threshold – as my pain level was a 10. I almost drove myself to the hospital. This is when my neurologist did another MRI, yet there was nothing on the MRI that could explain the horrible pain I was experiencing. So now, 11 months later, and obviously never taking a FQ again, I would have thought that I would be feeling better by now.. I am still trying to remain positive.. but the fear of never feeling better has taken over all of my thoughts. Am I just not giving it enough time yet? Is it possible too much damage has been done by the FQ? I know that this is what is wrong with me – I have been to many doctors, and have had many blood tests – everything has been ruled out.
I had a period of veins being frighteningly prominent, also prune fingers. They’re better now.
ANA neg
Celiac neg but high (after one year of no grains, which helped GI issues immediately)
Sed rate slightly higher than normal
EBV positive past infection
Rheumatoid slightly higher than cut off for normal
Lyme two bands, one of which is common to most people
Anyhow, I’m not only gluten-free but doctor-free so I’m not getting any more tests.
How many people here were prescribed steroids or other immune suppressing agents? Did you notice any improvement in your symptoms while using the immuno-suppresive agents?
My toxicity happened in March. It has taken a long time and a lot of work and tears but I have been improving steadily since having chiro/PT therapy. I was getting almost back to normal aside from the weight I have gained will NOT budge. In attempts to lose it – I have been on a strict diet and exercising more than I had been. And suddenly today I have a muscle spasm in my back, my forearm will not stop twitching (this happened all of the time when at my worst), my head is killing me and my calf is aching (peripheral neuropathy was my worst symptom after the toxicity but has been nearly resolved).
I don’t know if I am just having a bad day or if maybe the dieting/exercising is realizing some of the AB into my blood stream?? I had PVCs/PACs and SVT prior to everything. But it has also gotten worse in the past couple of weeks.
Its like I am just not allowed to feel well for five friggin minutes. I am so frustrated!!!!
Was digging on the Net a bit ago. I have been confused from the beginning and still am but it’s alright I have had a lot of ambiguity with Doctors, Medications and answers in my life. Really if you think about it, precision is rare. Some things are tough to answer. I have taken a ton of Prescriptions from Antibiotics and Psych Drugs. Never had a long lasting effect from any of them that I could narrow down to just one drug. Maybe smoking asthma(which is well known) I had medical conditions before and after this and honestly this has to be one of the worst experiences I have ever had with a prescription. Quite a brief adventure too. At least the smoking gives you back a base human pleasure and you pretty much are aware of it’s side effects. People stop digging through their RX side effects, after a few dozen prescriptions. Though lately I have been turning away from Prescriptions seeing all the damage they do to people. Most of the time that is from Cancer Drugs and Pain Killer Addiction. Nothing as soft core as treating a baby infection for a month or less.
Taking garlic knocks out the flu, rubbing on turmeric powder heals aches, boric acid terminates a yeast infection immediately. But every doctor I’ve seen is opposed to all of those things and insists on pharma with side effects.
what did you take cp and how much
Hello all
I may need to have a biopsy of a mark on my face. I’m concerned about the effect of local anaesthetic on my flox symptoms. Is there any specific anaesthetic I should avoid/recommend?