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Agata
7 years ago
Hi Lisa
I woul like to ask you how to avoid fluorid….i know its in toothpaste, cooking pans…teflon……water(our country does not fluorinate water)…..what else? Can you tell me more specific?
Thank you very much
Agata
7 years ago
Hi
Thanks for replay, i am avoiding this things you mentioned, but what about food….tea, vegetables?
charlottejacobs
7 years ago
Tea contains fluoride as do one third of medications as well as eye drops.
You can have filters installed to remove fluoride from tap water but this is expensive.
Kurt
7 years ago
Hi All,
I have hair loss on my lower left leg due to the neuropathy. Just wondering if anyone has experienced this and if the hair will eventually grow back?
Also….does collagen repair itself over time? My skin looks aged and loose. Just curious if it will look like this forever now or does it improve?
Has anyone ever used local anaestesia lidocaine, and have been okay? Also. …is valium safe for floxies? ?
Sarah
7 years ago
I found your site trying to find out what’s wrong with me. I have what they think is a sinus infection and told me to take mucinex and Flonase. The next day I was worse and was prescribed levofloxacin 500mg daily and after ONE dose, I started with extreme anxiety, restlessness, chills, calf pain and tingling in my foot. I stopped taking the levofloxacin but was told to take some ibuprofen for the leg pain. I was seen in the ER the next day and they switched the antibiotic to a z-pack and said my leg would get better. Two days after that ONE dose, the anxiety has subsided some but my leg is so sore from my hip down, feels so weak, and my joints are popping. I still am having the chills pretty bad. I am hoping that this will start getting better and not worse as I am leaving on a trip in 6 days… and suggestions on how to correct the poison I put in my body would be greatly appreciated!!!
Mark S
7 years ago
Hi All,
Been an on and off poster here for about two years. I think it’s important to bring up the issue of manganese and how it plays into what has happened to us. No, not magnesium. MANGANESE. This goes virtually ignored on all support groups that I’ve seen and I don’t understand why.
1. Manganese chelates fluoroquinolones, especially ciprofloxacin! That means when you take a FQ drug, all the manganese in your body is going to bind with it, just like happens with magnesium and other trace minerals, and your body will dump it as waste.
Studies have also shown that Manganese inhibits the body’s absorption of these medications. Which is why they recommend avoiding taking them together. Studies also show that men have a harder time absorbing manganese in the first place so men may be more prone to connective tissue problems when taking a FQ.
As far as I can see with all my research, it’s pretty simple. FQ’s disrupt the collagen matrix. We know this. But what specifically? Well, if your body doesn’t have any manganese left, how is it suppose to produce collagen for strong tendons? How is it suppose to produce cartilage and synovial fluid for properly functioning joints? How can it produce necessary digestive enzymes? It can’t. Even more interesting, it has been shown that magnesium supplements hurt the body’s ability to properly absorb manganese. This especially stood out to me because after I was floxed, and I started taking nothing but magnesium in large doses, my knees cartilage wore away and seemed like there was no lubricating fluid left in them. Was this because the Cipro took away my manganese and magnesium worsened the fact?
The recommended amount of manganese daily is only a couple mg. However, I think us floxies are a special case and are dangerously deficient. I take 10-20 mgs a day along with co-factors such as Vitamin C and E, and a joint formula. I think I have been making strides and it could be our silver bullet in regards to why we have connective tissue problems.
THIS IS JUST MY HYPOTHESIS. But I have spent much time looking into the matter and would urge other people experiencing the same symptoms to looks into manganese at your own discretion.
A
7 years ago
Has anyone else had intense/weird, vivid dreams while on Levaquin or other flox med? The kind where you wake up shaken up because of how intense the dream was? I definitely had them while on the med and I seem to still have them here and there- even quite a while after stopping them…
Sarah
7 years ago
What type of magnesium supplement is the best? I bought magnesium stearate but I think that is wrong as it does something to the T cells….
Pat
7 years ago
I was looking for a little guidance and any advice is appreciated. I was put on Levaquin and Prednisone for a sinus infection two weeks ago. I ended a 5 day dose of Levaquin on Feb 3rd and had an outbreak of symptoms on Feb 8th. Looking back I had some early signs from the moment I started taking it but it was moving a heavy box that really brought it all to my attention. Burning muscle pain, joint pain, tingling in my fingers and numbness in my right hand, tightness in my calfs and legs and panic attacks. The pins and needles only lasted the first 36 hours and the burning pain has subsided but I still dont feel right. My muscles are tight and joints ache and pop and if I do any activity even carrying bags for an extended time my arms ache like I just got done working out. I had two questions.
1. I am only a week out of when my symptoms first really started. I am beyond scared of what is to come next. I feel like some of it has lessened from that first day but everything I have read it seems like it will get worse before better. How long do these symptoms keep developing for? Is it ever in different scales from moderate to severe or do most hit a bottom point after some time?
2. I can not find any hard list of supplements and dietary ideas to get started on only a collection of other peoples posts and ideas. I so far know that clean eating is key. Is that e-book that i found online worth the money? This is what I came up with so far any feedback is welcome.
Magnesium 250mg chelated
maganese
whey protein
tumeric
creatine
iron low dosage
glucocismine
Co enxyme Q10
Colostrum
NAC
D3
K2
Vitamin C
Calcium
probiotic
It seems like a lot to be taking at once. Do you guys still take a multi vitamin or just a regiment of supplements?
Thanks again
Hello everyone,
I wish all of you a speedy recovery and future good health. It has been 5 years since I was Floxed. Remember take one day at a time and think everyday is a good day. Don’t focus on the past focus on the positive and avoid the negative. I had to learn to let my anger go. I have learned humility and patience. I really sympathize with other people now.
I have been disabled for awhile but I do notice small victories that make me happy.
Lisa as you are aware I was diagnosed with Adult Autoimmune Enteropathy about 2 years ago. I have been seeing a specialist at the Cleveland Clinic. They feel that the fluoroquinolones brought out the autoimmune response.
I go to doctors in Grand Rapids, and Lansing. I have a great ND who has helped me quite a but. I have met many Fellow Floxies these last few years. I found a great Chinese acupuncturist who I love. My physical therapist is amazing. I run my rife machine twice a week. I keep a food journal. I take IV therapy and I will be trying CBD oil under a doctors supervision.
Unfortunately I am still on the steroids. My hope is that the CBD oil will help me come off them. They have had me on all kinds of meds since my Cipro Poisoning none have helped. Plus I do not trust big Pharma.
I will be seeing a few specialist in the near future at Age Management Clinic in Grand Rapids, MI then a doctor in Greenville, MI. I am also going to the University of Michigan to have a GI specialist so I can get help a little closer to home. I still will be seeing my GI doc at the Cleveland Clinic as well.
I am very thankful to all the Natural paths that have helped me, and I am glad to have met people like all of you.
last month I was only 114 lbs. I suffer from malabsorption and dehydration quite a lot.
My levels drop all the time. I think that Cipro messed with the collagen in my intestines and left my tendons alone. I am now 136lbs. I can walk with my cane and I do get to go fishing once in awhile.
Well I wish you all the best and if there is anything I can do to help anyone. Please ask.
Sincerely Yours,
Michael.
Hi I was wondering if you could tell me why ibuprofen triggers the toxic reaction with floroquinolones? I had the same thing happen to me when I had a toxic reaction to a steroid. Three weeks later I took ibuprofen mixed with dmso and it kicked up all the steroid symptoms majorly and i realized it was still in my body. DMSO greatly potentiates medications its mixed with. That was seven months ago and im still struggling greatly. Any info would be appreciated as to why that may have happened. The next time I tried to take ibuprofen after that I could tell it was extremely toxic to me after that. Thank you
SM
7 years ago
Someone a while back mentioned a mag protocol from a FB Group. I’ve since joined the group and read a lot. It’s a huge group, like 30,000+ people I believe. Anyway, the protocol gave me lots of insight into what I had been doing for years. As a 180 pound male, the idea of taking 500-600 mg of magnesium daily (which I’ve done for almost two years) is almost laughable based on that group. B6 and boron are needed cofactors- I wasn’t taking them. And their recommendation is 5 mg of mag per pound of body weight as a MAINTENANCE dose. That would be 900 mg! If that protocol is correct, my 500 mg without cofactors has been way too wimpy. Not even close. I’m not suggesting anyone do this. Do your own research please. But if that 5 mg/pound dosage is correct, and we truly are deficient in mag, it’s no wonder many don’t bounce back. I’m not sure if mag will help me, but if I need it, 500 mg isn’t going to cut it. Especially without the necessary cofactors!
Pat
7 years ago
Does anyone have any advice for a good detox protocol to follow. I am only 16 days from finishing the does of levaquin and have been taking Magnesium, Vitamin E, Vitamin C, a probiotic and a multi vitamin. I had read about people saying detox was the first step and wanted to know where to begin. Thanks again.
Katie Kay
7 years ago
I was given Cipro as a precautionary antibiotic after surgery (worries about infection). 500mg twice a day for 10 days. The doctor nor the pharmacist gave me any info on tendon issues. I had to look it up and connect the dots. I’m now 2 months out. Sometimes I have terrible achilles pain. Wearing 2 cam walker boots most places as my ankles/legs feel dreadfully weak. (Thankfully was able to go to an orthopedic doctor and tell them it was absolutely the Cipro. She’d seen this before and didn’t argue, so I didn’t run into the gamut of tests, etc and questions…we knew from the get-go what we were dealing with)
My question is…what would you suggest for pain? My new “norm” is a pain level 2-3 with it flaring badly at times (especially if I try and do too much). The doctor gave me some Tramadol (50mg) which I take once a day, but it doesn’t help with the bad times. Using ice on my ankles/legs definitely helps, but I wonder how people deal with the pain management. Anyone have any thoughts?
Here’s a 15% off coupon for uBiome microbiome sequencing – http://ubiome.refr.cc/LNV6NSL. I thought it was interesting – though it turns out that my microbial diversity stinks, both literally and figuratively. I’m in the 11th percentile for microbial diversity. :/
Rhonda
7 years ago
Does anybody else still have occasional muscle jerks from the cipro? I’m about 10 months post flox and I still get the muscle jerks, brain fog and floaters in my eyes and a few other things.
Maggie
7 years ago
Has anyone still improved after 4 years? It will be four years for me this summer. I still have so many issues (cracking, popping, pain all over). I am losing hope.
James Stamboni
7 years ago
Does anyone have experience with prolozone treatments? I have an injury/ weakness in my left patella that hasn’t improved in over a month of rest. Has anyone had negative side effects from prolozone injections?
Hi Lisa
I woul like to ask you how to avoid fluorid….i know its in toothpaste, cooking pans…teflon……water(our country does not fluorinate water)…..what else? Can you tell me more specific?
Thank you very much
Hi
Thanks for replay, i am avoiding this things you mentioned, but what about food….tea, vegetables?
Tea contains fluoride as do one third of medications as well as eye drops.
You can have filters installed to remove fluoride from tap water but this is expensive.
Hi All,
I have hair loss on my lower left leg due to the neuropathy. Just wondering if anyone has experienced this and if the hair will eventually grow back?
Also….does collagen repair itself over time? My skin looks aged and loose. Just curious if it will look like this forever now or does it improve?
Thanks for any info!!
Has anyone ever used local anaestesia lidocaine, and have been okay? Also. …is valium safe for floxies? ?
I found your site trying to find out what’s wrong with me. I have what they think is a sinus infection and told me to take mucinex and Flonase. The next day I was worse and was prescribed levofloxacin 500mg daily and after ONE dose, I started with extreme anxiety, restlessness, chills, calf pain and tingling in my foot. I stopped taking the levofloxacin but was told to take some ibuprofen for the leg pain. I was seen in the ER the next day and they switched the antibiotic to a z-pack and said my leg would get better. Two days after that ONE dose, the anxiety has subsided some but my leg is so sore from my hip down, feels so weak, and my joints are popping. I still am having the chills pretty bad. I am hoping that this will start getting better and not worse as I am leaving on a trip in 6 days… and suggestions on how to correct the poison I put in my body would be greatly appreciated!!!
Hi All,
Been an on and off poster here for about two years. I think it’s important to bring up the issue of manganese and how it plays into what has happened to us. No, not magnesium. MANGANESE. This goes virtually ignored on all support groups that I’ve seen and I don’t understand why.
1. Manganese chelates fluoroquinolones, especially ciprofloxacin! That means when you take a FQ drug, all the manganese in your body is going to bind with it, just like happens with magnesium and other trace minerals, and your body will dump it as waste.
http://www.ncbi.nlm.nih.gov/pubmed/23444035
2. Manganese detoxifies your mitochondria.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2067987/
3. Manganese is necessary for endocrine function.
https://books.google.com/books?id=HTUDXnJwVwIC&pg=PA251&lpg=PA251&dq=manganese+polydipsia&source=bl&ots=Tz15XwMjap&sig=9eNXmR5C6qSKvLMdYCsrsxG6ryA&hl=en&sa=X&ei=LOMcVZ7tC5G0oQTZxYCQAw&ved=0CCwQ6AEwBA#v=onepage&q=endocrine&f=false
4. Manganese is also a necessary nutrient for wound healing… in other words, you can’t make collagen without it.
https://books.google.com/books?id=vhni0jStgWYC&pg=PA155&lpg=PA155&dq=manganese+deficiency+collagen&source=bl&ots=vO-JbTGCMl&sig=SA9dOLOqmPcep_JiMyg-hA-FGfI&hl=en&sa=X&ei=9MccVa7bDZetoQTQ64HwDA&ved=0CGkQ6AEwDQ#v=onepage&q&f=false
Studies have also shown that Manganese inhibits the body’s absorption of these medications. Which is why they recommend avoiding taking them together. Studies also show that men have a harder time absorbing manganese in the first place so men may be more prone to connective tissue problems when taking a FQ.
As far as I can see with all my research, it’s pretty simple. FQ’s disrupt the collagen matrix. We know this. But what specifically? Well, if your body doesn’t have any manganese left, how is it suppose to produce collagen for strong tendons? How is it suppose to produce cartilage and synovial fluid for properly functioning joints? How can it produce necessary digestive enzymes? It can’t. Even more interesting, it has been shown that magnesium supplements hurt the body’s ability to properly absorb manganese. This especially stood out to me because after I was floxed, and I started taking nothing but magnesium in large doses, my knees cartilage wore away and seemed like there was no lubricating fluid left in them. Was this because the Cipro took away my manganese and magnesium worsened the fact?
The recommended amount of manganese daily is only a couple mg. However, I think us floxies are a special case and are dangerously deficient. I take 10-20 mgs a day along with co-factors such as Vitamin C and E, and a joint formula. I think I have been making strides and it could be our silver bullet in regards to why we have connective tissue problems.
THIS IS JUST MY HYPOTHESIS. But I have spent much time looking into the matter and would urge other people experiencing the same symptoms to looks into manganese at your own discretion.
Has anyone else had intense/weird, vivid dreams while on Levaquin or other flox med? The kind where you wake up shaken up because of how intense the dream was? I definitely had them while on the med and I seem to still have them here and there- even quite a while after stopping them…
What type of magnesium supplement is the best? I bought magnesium stearate but I think that is wrong as it does something to the T cells….
I was looking for a little guidance and any advice is appreciated. I was put on Levaquin and Prednisone for a sinus infection two weeks ago. I ended a 5 day dose of Levaquin on Feb 3rd and had an outbreak of symptoms on Feb 8th. Looking back I had some early signs from the moment I started taking it but it was moving a heavy box that really brought it all to my attention. Burning muscle pain, joint pain, tingling in my fingers and numbness in my right hand, tightness in my calfs and legs and panic attacks. The pins and needles only lasted the first 36 hours and the burning pain has subsided but I still dont feel right. My muscles are tight and joints ache and pop and if I do any activity even carrying bags for an extended time my arms ache like I just got done working out. I had two questions.
1. I am only a week out of when my symptoms first really started. I am beyond scared of what is to come next. I feel like some of it has lessened from that first day but everything I have read it seems like it will get worse before better. How long do these symptoms keep developing for? Is it ever in different scales from moderate to severe or do most hit a bottom point after some time?
2. I can not find any hard list of supplements and dietary ideas to get started on only a collection of other peoples posts and ideas. I so far know that clean eating is key. Is that e-book that i found online worth the money? This is what I came up with so far any feedback is welcome.
Magnesium 250mg chelated
maganese
whey protein
tumeric
creatine
iron low dosage
glucocismine
Co enxyme Q10
Colostrum
NAC
D3
K2
Vitamin C
Calcium
probiotic
It seems like a lot to be taking at once. Do you guys still take a multi vitamin or just a regiment of supplements?
Thanks again
Hello everyone,
I wish all of you a speedy recovery and future good health. It has been 5 years since I was Floxed. Remember take one day at a time and think everyday is a good day. Don’t focus on the past focus on the positive and avoid the negative. I had to learn to let my anger go. I have learned humility and patience. I really sympathize with other people now.
I have been disabled for awhile but I do notice small victories that make me happy.
Lisa as you are aware I was diagnosed with Adult Autoimmune Enteropathy about 2 years ago. I have been seeing a specialist at the Cleveland Clinic. They feel that the fluoroquinolones brought out the autoimmune response.
I go to doctors in Grand Rapids, and Lansing. I have a great ND who has helped me quite a but. I have met many Fellow Floxies these last few years. I found a great Chinese acupuncturist who I love. My physical therapist is amazing. I run my rife machine twice a week. I keep a food journal. I take IV therapy and I will be trying CBD oil under a doctors supervision.
Unfortunately I am still on the steroids. My hope is that the CBD oil will help me come off them. They have had me on all kinds of meds since my Cipro Poisoning none have helped. Plus I do not trust big Pharma.
I will be seeing a few specialist in the near future at Age Management Clinic in Grand Rapids, MI then a doctor in Greenville, MI. I am also going to the University of Michigan to have a GI specialist so I can get help a little closer to home. I still will be seeing my GI doc at the Cleveland Clinic as well.
I am very thankful to all the Natural paths that have helped me, and I am glad to have met people like all of you.
last month I was only 114 lbs. I suffer from malabsorption and dehydration quite a lot.
My levels drop all the time. I think that Cipro messed with the collagen in my intestines and left my tendons alone. I am now 136lbs. I can walk with my cane and I do get to go fishing once in awhile.
Well I wish you all the best and if there is anything I can do to help anyone. Please ask.
Sincerely Yours,
Michael.
Hi I was wondering if you could tell me why ibuprofen triggers the toxic reaction with floroquinolones? I had the same thing happen to me when I had a toxic reaction to a steroid. Three weeks later I took ibuprofen mixed with dmso and it kicked up all the steroid symptoms majorly and i realized it was still in my body. DMSO greatly potentiates medications its mixed with. That was seven months ago and im still struggling greatly. Any info would be appreciated as to why that may have happened. The next time I tried to take ibuprofen after that I could tell it was extremely toxic to me after that. Thank you
Someone a while back mentioned a mag protocol from a FB Group. I’ve since joined the group and read a lot. It’s a huge group, like 30,000+ people I believe. Anyway, the protocol gave me lots of insight into what I had been doing for years. As a 180 pound male, the idea of taking 500-600 mg of magnesium daily (which I’ve done for almost two years) is almost laughable based on that group. B6 and boron are needed cofactors- I wasn’t taking them. And their recommendation is 5 mg of mag per pound of body weight as a MAINTENANCE dose. That would be 900 mg! If that protocol is correct, my 500 mg without cofactors has been way too wimpy. Not even close. I’m not suggesting anyone do this. Do your own research please. But if that 5 mg/pound dosage is correct, and we truly are deficient in mag, it’s no wonder many don’t bounce back. I’m not sure if mag will help me, but if I need it, 500 mg isn’t going to cut it. Especially without the necessary cofactors!
Does anyone have any advice for a good detox protocol to follow. I am only 16 days from finishing the does of levaquin and have been taking Magnesium, Vitamin E, Vitamin C, a probiotic and a multi vitamin. I had read about people saying detox was the first step and wanted to know where to begin. Thanks again.
I was given Cipro as a precautionary antibiotic after surgery (worries about infection). 500mg twice a day for 10 days. The doctor nor the pharmacist gave me any info on tendon issues. I had to look it up and connect the dots. I’m now 2 months out. Sometimes I have terrible achilles pain. Wearing 2 cam walker boots most places as my ankles/legs feel dreadfully weak. (Thankfully was able to go to an orthopedic doctor and tell them it was absolutely the Cipro. She’d seen this before and didn’t argue, so I didn’t run into the gamut of tests, etc and questions…we knew from the get-go what we were dealing with)
My question is…what would you suggest for pain? My new “norm” is a pain level 2-3 with it flaring badly at times (especially if I try and do too much). The doctor gave me some Tramadol (50mg) which I take once a day, but it doesn’t help with the bad times. Using ice on my ankles/legs definitely helps, but I wonder how people deal with the pain management. Anyone have any thoughts?
Has anyone on here suffered insomnia?
Here’s a 15% off coupon for uBiome microbiome sequencing – http://ubiome.refr.cc/LNV6NSL. I thought it was interesting – though it turns out that my microbial diversity stinks, both literally and figuratively. I’m in the 11th percentile for microbial diversity. :/
Does anybody else still have occasional muscle jerks from the cipro? I’m about 10 months post flox and I still get the muscle jerks, brain fog and floaters in my eyes and a few other things.
Has anyone still improved after 4 years? It will be four years for me this summer. I still have so many issues (cracking, popping, pain all over). I am losing hope.
Does anyone have experience with prolozone treatments? I have an injury/ weakness in my left patella that hasn’t improved in over a month of rest. Has anyone had negative side effects from prolozone injections?