For over a decade this page has been dedicated to enabling the conversation for floxies to talk with one another. Sign up and subscribe to get all the latest comments.
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
I allow to create an account
When you login first time using a Social Login button, we collect your account public profile information shared by Social Login provider, based on your privacy settings. We also get your email address to automatically create an account for you in our website. Once your account is created, you'll be logged-in to this account.
DisagreeAgree
26.5K Comments
Inline Feedbacks
View all comments
Andrew
10 years ago
Does anyone have suggestions for:
tinnitus
pain – over the counter or marijuana?
Thanks
Glori Lundstrom
10 years ago
They put me on Cipro after I told them I was allergic to it. It swelled me up, and it gave me tendinitis in my right arm. I could barely move anymore. Needed help rising off the toilet. I’m 47 years old. Corticosteroids have given relief, but the drug side effects warn that they could make the tendinitis worse. I am scared.
Jimmy
10 years ago
Brandon, I did phospholipid exchange therapy in October or November, at 6 months out. I only did it twice though. As far as the cost it was about $250 a session. I stopped doing it after the second session because I had a rapid heart rate and it exacerbated my symptoms but just for a few hours. But it scared me enough to not want to do it again. In retrospect I wish I had done it again even though I’m not really sure it helped. But I would’ve liked to have seen if it does or could have helped. At the time. The idea of it does make sense and I’m still curious about it. I don’t believe it made anything worse except for that brief problem after the second time. But that could’ve been just flushing out the toxins from my fat cells and maybe not enough glutathione to deal with it or I had a reaction to glutathione. In fact that was my larger concern is that there was a problem with my MTH a far and I was not supposed to have so much glutathione. Glutathione is necessary after the phospholipid removal substance. I don’t believe very many doctors do this… I’m in Los Angeles, where are you located?
Jimmy
Brandon
10 years ago
HI Jimmy,
Thanks for the info. I’m based in London so plenty of docs of all stripes here. So it sounds like you tolerated the first treatment well, but had trouble with the second. Are you generally sensitive to supplements, etc., or was it unusual for you to have this difficulty. How many treatments would have been a complete course (or are you not sure)? Saw what you wrote about MTHFR. I haven’t been tested but my mom is homozygous for C677T, so I may well have this at the root of my problems as well. So from what you have said folks with some forms of MTHFR mutations have difficulty hadling glutathione…is that right? Where did you get that info?
Brandon
Jimmy
10 years ago
Hi Brandon. Feel free to email me at jimmybruhl@gmail.com. In short, I learned about the mthfr issue and glutathione from a site called myquinstory.info there are a couple articles there about how many floxes have this mthfr mutation and it makes large doses, or iv doses of glutathione more toxic than helpful. In retrospect, I did a few of just glutathione and always had a problem. I assumed it was because I was having a problem taking large dose of magnesium which I did at the same time. And I never felt glutathione helped me at all. How many pills did you take? Cipro or levaquin? And how far out are you? What are your symptoms right now? And never been sensitive to supplements but once your Floxed, your body sometimes has difficulty with supplements. I really can take anything now but glutathione gave me a problem. That said it could have just caused the release of the drug from tissue and that was the cause of the reaction. Do you plan on checking your mthfr?
Brandon
10 years ago
Hi Jimmy. Thanks for the info. I wasn’t sure how important the mthfr was, but having read your post, I think it is worth having it checked — only thing is in the UK it’s pretty pricey to do so as it isn’t standard on the NHS. I’m three months out, but had surgery recently (unrelated) which seemed to exacerbate the issues. I had cirpo for only four days, but I had it years back, and also had some underlying health/fatigue issues, that I now am thinking might be linked to previous exposure to this and/or lariam. My symptoms are moderate, I suppose, tendonitis in ankles and wrists, that can be quite limiting, depending on the day, and some PN in legs and feet. Also some dry mouth (mostly at night), fatigue, and occasional visual disturbance etc. Funny how this thing cycles. The nervous system issues are a bit better today, but now the tendons are playing up more. As for supplements — I have had some issues with magnesium — really wiped me out at high doses and seemed to exacerbate PN and even caused a bit of muscle weakness (which has gone away now, thank god).
I did have glutathione IV many years ago for fatigue, and it didn’t cause me any issues, but who knows — it may be a different world post-floxing.
Anyway many thanks for the links and any further insight you may have.
Brandon
Brandon
10 years ago
Also Jimmy would you happen to have the link to the page at my quin story that indicates that folks with MTHFR problems have difficulty tolerating glutathione. I was unable to locate this.
Many thanks,
Brandon
Tia
10 years ago
Hello everyone. Two and a half months ago I took Cipro for a “possible” UTI (more likely a kidney stone). I’ve had Cipro several times in my life and never had a problem before. I never even knew there was such a thing as floxing. About 2 weeks after the Cipro I had a nasty cold for which my dr prescribed Flonase. At that time, I also had severe menstrual cramps for which the only thing that helps is high levels of NSAIDs. During this time, I started experiencing muscle twitching, soreness, shaking, vibrations and dizziness. Since this time, I found a new dr that believes I have a nasty case of c. diff and prescribed Flagyl, which I’m on now. Two days ago, I went to my acupuncturist who told me about floxing. I’m currently taking Vit D, trace minerals, magnesium lotion, curcumin, and probiotics. My symptoms aren’t as severe as some I’ve read, but I’m not myself. These vibrations and shaking are driving me nuts. The vibrations are also in my head and the dizziness makes it hard to concentrate. I’ve had blood tests and am still waiting for my Vit D to come back. Somehow I’m still hoping these symptoms aren’t floxing but a severe vit D deficiency instead. The Flagyl is making it difficult to eat and giving me stomach cramps. I’m not in any pain (knock on wood). I just want to get rid of the vibrations and now I’m concerned about taking the Flagyl. Any thoughts/opinions are appreciated.
Michael Teeter
10 years ago
Hello everyone,
I was wonder are there other Floxies that have had circulatory problems? My bad areas are my left and and both my knees. They are just full of inflammation. But now I notice when I get up on my feet they all turn red and purple.
T.J.
10 years ago
I am feeling mostly recovered, but a quick question that hopefully somewhere here will know about. I never had the chicken pox, and am wondering if it is same for me to get the vaccine?
Mark
10 years ago
Gonna post this this here as well:
Just got a call back from a doctor my mother knows (she is also a doctor).
This doctor had a daughter that got Cipro for 10 days and had the same side effects as me (tendon-, muscle- and joint-pain, mild depression, tinnitus, etc…)
This doctor said that his daughter is cured 100%, meaning she is doing sports again, pain free, etc…
He treated her with Ibuprofen 3x600mg and pantoloc daily.
NOW I’M CONFUSED.
This doctor is the head of the the microbiologic department at a well known hospital and also the head of the “infectious disease working circle”, so he must know what he’s doing.
BUT isn’t Ibuprofen supposed to be counter-productive and even bad for Cipro sufferers.
IMPORTANT QUESTION:
Who here has tried Ibuprofen and maybe Pantoloc to go with it?
Did it help you?
Any worsening side effects?
Please @ all and Lisa let’s try to make this a long list of Ibuprofen experiences here, the way it sounds it was a complete treatment for this girl.
Mark
SM
10 years ago
I so appreciate the positive vibe on this site. One of the things that I find so difficult, in addition to the actual pain of floxing, is the lack of positive stories out there. The web must have a 25:1 ratio of negative/currently struggling story to recovery/mostly recovered story. And when I read those stories, I relate to the pain that those people went through. But then I see that it was shared in 2011 or whenever, and there seems to be no follow up on that person’s status. What am I to think? The positive side of my brain says, “That person probably recovered and moved on”, but the other side says, “How could anyone just move on and not share their story, knowing how important it it to have hope when you’re a floxie?” I don’t mean to sound judgmental, just trying to understand. Sometimes the negative side of my brain takes over and I see hundreds of stories with seemingly no real recovery and only a dozen or so actual recoveries (listed on this site). In the face of that kind of information, it can be hard to keep my head up. I’m sure others can relate.
Paul
10 years ago
Has anyone ever had to treat bacterial prostatitis after being floxed? I fear that this is raising its head again and with cipro being the first choice I wonder if there is an alternative therapy available. I simply cannot afford to have any more quinolone in my system….
Jimmy
10 years ago
Paul, may I ask what your issues are with this floxing? Any tendon issues? Hip? Did you have any of that the last time? Thanks
SM
10 years ago
Paul- Sorry about your issues. That sucks that you didn’t figure it out the first time. On the positive, you probably didn’t follow the standard floxie recovery protocol (avoid NSAIDS, steroids, nonorganic meats) and you still recovered. You seem like a positive person and that should also serve you well.
Today I have the pleasure of dealing with burning feet, one of my all time favorites. 🙂
Kim
10 years ago
Hi, a month ago I had an emergency appendectomy (gangrenous and perforated) and was given intravenous Levaquin for four days in the hospital because I had a very bad abdominal infection. My nurse did not like the look of my IV site (two days after it was inserted) in my right ellbow, so she removed it and one was put into my left arm. As soon as it was removed I began having symptoms: difficulty moving my hand and fingers, the feeling that there was a cord in my arm which prevented me from straightening it without stabbing pain, inability to completely bend my wrist, burning, tingling, etc. I mentioned it several times to the nurses and to one of the doctors who weren’t particularly concerned. When I got home, it just got worse. I began having blurry vision. I googled Levaquin and read about the damage it can cause, about the class action suit, etc. The next day I called my surgeon (who sent me home with two oral prescriptions, one for Flagyl and one for Levaquin) and told him I stopped taking them so he put me on Bactrim for the rest of the week.
Since then I have seen a neurologist, hand surgeon, vascular surgeon. No vascular injury. The neurologist thinks I have posterior interosseus nerve injury which he thinks could have been caused by the IV or the Levaquin or both. He said he thinks it will go away in time but, of course, he does not have a crystal ball. The hand surgeon didn’t agree with his diagnosis but could not give one of his own, only that I had some nerve damage that he did not think surgery would make better.
The cord in the arm symptom has gotten better, but my wrist and fingers have gotten worse. Also, three months ago I broke my left collarbone and had surgery for that, so I’m going to physical therapy to get back the use of my left arm. I have not been a happy camper about all that has happened, but the shoulder is healing well and I’m, completely healed from the appendectomy. But I still have this right arm/hand problem and I wonder if the weight training and exercising is inflaming my wrist and fingers.
If anyone has had any similar experience I’d love to hear from you, especially in terms of what I can do to help myself heal.
Thanks,
Kim
Jimmy
10 years ago
Hi everyone. Supposedly magnesium l threonate is the only mag with molecules so small as to enter the brain or access/protect mitochondria. See mercola website. Have anyone ever tried it or ionic mag? Any problems of dizziness from either?
For those of us that are into our second year of being floxed, do you know the ways that we can see that we are near to recovery? I’ve gone from 3-to-4 hrs of sleep to now sleeping 7-to-8 hours, which is a definite improvement. However, my memory is still extremely poor. With improvement of sleep, can this mean my memory will probably improve soon? Or, can there be other indicators before memory will return? Thank you! Chris
Michael Teeter
10 years ago
Has anyone heard or tried either serrapeptase or intenzyme forte? supposed to be good for pain.
Does anyone have suggestions for:
tinnitus
pain – over the counter or marijuana?
Thanks
They put me on Cipro after I told them I was allergic to it. It swelled me up, and it gave me tendinitis in my right arm. I could barely move anymore. Needed help rising off the toilet. I’m 47 years old. Corticosteroids have given relief, but the drug side effects warn that they could make the tendinitis worse. I am scared.
Brandon, I did phospholipid exchange therapy in October or November, at 6 months out. I only did it twice though. As far as the cost it was about $250 a session. I stopped doing it after the second session because I had a rapid heart rate and it exacerbated my symptoms but just for a few hours. But it scared me enough to not want to do it again. In retrospect I wish I had done it again even though I’m not really sure it helped. But I would’ve liked to have seen if it does or could have helped. At the time. The idea of it does make sense and I’m still curious about it. I don’t believe it made anything worse except for that brief problem after the second time. But that could’ve been just flushing out the toxins from my fat cells and maybe not enough glutathione to deal with it or I had a reaction to glutathione. In fact that was my larger concern is that there was a problem with my MTH a far and I was not supposed to have so much glutathione. Glutathione is necessary after the phospholipid removal substance. I don’t believe very many doctors do this… I’m in Los Angeles, where are you located?
Jimmy
HI Jimmy,
Thanks for the info. I’m based in London so plenty of docs of all stripes here. So it sounds like you tolerated the first treatment well, but had trouble with the second. Are you generally sensitive to supplements, etc., or was it unusual for you to have this difficulty. How many treatments would have been a complete course (or are you not sure)? Saw what you wrote about MTHFR. I haven’t been tested but my mom is homozygous for C677T, so I may well have this at the root of my problems as well. So from what you have said folks with some forms of MTHFR mutations have difficulty hadling glutathione…is that right? Where did you get that info?
Brandon
Hi Brandon. Feel free to email me at jimmybruhl@gmail.com. In short, I learned about the mthfr issue and glutathione from a site called myquinstory.info there are a couple articles there about how many floxes have this mthfr mutation and it makes large doses, or iv doses of glutathione more toxic than helpful. In retrospect, I did a few of just glutathione and always had a problem. I assumed it was because I was having a problem taking large dose of magnesium which I did at the same time. And I never felt glutathione helped me at all. How many pills did you take? Cipro or levaquin? And how far out are you? What are your symptoms right now? And never been sensitive to supplements but once your Floxed, your body sometimes has difficulty with supplements. I really can take anything now but glutathione gave me a problem. That said it could have just caused the release of the drug from tissue and that was the cause of the reaction. Do you plan on checking your mthfr?
Hi Jimmy. Thanks for the info. I wasn’t sure how important the mthfr was, but having read your post, I think it is worth having it checked — only thing is in the UK it’s pretty pricey to do so as it isn’t standard on the NHS. I’m three months out, but had surgery recently (unrelated) which seemed to exacerbate the issues. I had cirpo for only four days, but I had it years back, and also had some underlying health/fatigue issues, that I now am thinking might be linked to previous exposure to this and/or lariam. My symptoms are moderate, I suppose, tendonitis in ankles and wrists, that can be quite limiting, depending on the day, and some PN in legs and feet. Also some dry mouth (mostly at night), fatigue, and occasional visual disturbance etc. Funny how this thing cycles. The nervous system issues are a bit better today, but now the tendons are playing up more. As for supplements — I have had some issues with magnesium — really wiped me out at high doses and seemed to exacerbate PN and even caused a bit of muscle weakness (which has gone away now, thank god).
I did have glutathione IV many years ago for fatigue, and it didn’t cause me any issues, but who knows — it may be a different world post-floxing.
Anyway many thanks for the links and any further insight you may have.
Brandon
Also Jimmy would you happen to have the link to the page at my quin story that indicates that folks with MTHFR problems have difficulty tolerating glutathione. I was unable to locate this.
Many thanks,
Brandon
Hello everyone. Two and a half months ago I took Cipro for a “possible” UTI (more likely a kidney stone). I’ve had Cipro several times in my life and never had a problem before. I never even knew there was such a thing as floxing. About 2 weeks after the Cipro I had a nasty cold for which my dr prescribed Flonase. At that time, I also had severe menstrual cramps for which the only thing that helps is high levels of NSAIDs. During this time, I started experiencing muscle twitching, soreness, shaking, vibrations and dizziness. Since this time, I found a new dr that believes I have a nasty case of c. diff and prescribed Flagyl, which I’m on now. Two days ago, I went to my acupuncturist who told me about floxing. I’m currently taking Vit D, trace minerals, magnesium lotion, curcumin, and probiotics. My symptoms aren’t as severe as some I’ve read, but I’m not myself. These vibrations and shaking are driving me nuts. The vibrations are also in my head and the dizziness makes it hard to concentrate. I’ve had blood tests and am still waiting for my Vit D to come back. Somehow I’m still hoping these symptoms aren’t floxing but a severe vit D deficiency instead. The Flagyl is making it difficult to eat and giving me stomach cramps. I’m not in any pain (knock on wood). I just want to get rid of the vibrations and now I’m concerned about taking the Flagyl. Any thoughts/opinions are appreciated.
Hello everyone,
I was wonder are there other Floxies that have had circulatory problems? My bad areas are my left and and both my knees. They are just full of inflammation. But now I notice when I get up on my feet they all turn red and purple.
I am feeling mostly recovered, but a quick question that hopefully somewhere here will know about. I never had the chicken pox, and am wondering if it is same for me to get the vaccine?
Gonna post this this here as well:
Just got a call back from a doctor my mother knows (she is also a doctor).
This doctor had a daughter that got Cipro for 10 days and had the same side effects as me (tendon-, muscle- and joint-pain, mild depression, tinnitus, etc…)
This doctor said that his daughter is cured 100%, meaning she is doing sports again, pain free, etc…
He treated her with Ibuprofen 3x600mg and pantoloc daily.
NOW I’M CONFUSED.
This doctor is the head of the the microbiologic department at a well known hospital and also the head of the “infectious disease working circle”, so he must know what he’s doing.
BUT isn’t Ibuprofen supposed to be counter-productive and even bad for Cipro sufferers.
IMPORTANT QUESTION:
Who here has tried Ibuprofen and maybe Pantoloc to go with it?
Did it help you?
Any worsening side effects?
Please @ all and Lisa let’s try to make this a long list of Ibuprofen experiences here, the way it sounds it was a complete treatment for this girl.
Mark
I so appreciate the positive vibe on this site. One of the things that I find so difficult, in addition to the actual pain of floxing, is the lack of positive stories out there. The web must have a 25:1 ratio of negative/currently struggling story to recovery/mostly recovered story. And when I read those stories, I relate to the pain that those people went through. But then I see that it was shared in 2011 or whenever, and there seems to be no follow up on that person’s status. What am I to think? The positive side of my brain says, “That person probably recovered and moved on”, but the other side says, “How could anyone just move on and not share their story, knowing how important it it to have hope when you’re a floxie?” I don’t mean to sound judgmental, just trying to understand. Sometimes the negative side of my brain takes over and I see hundreds of stories with seemingly no real recovery and only a dozen or so actual recoveries (listed on this site). In the face of that kind of information, it can be hard to keep my head up. I’m sure others can relate.
Has anyone ever had to treat bacterial prostatitis after being floxed? I fear that this is raising its head again and with cipro being the first choice I wonder if there is an alternative therapy available. I simply cannot afford to have any more quinolone in my system….
Paul, may I ask what your issues are with this floxing? Any tendon issues? Hip? Did you have any of that the last time? Thanks
Paul- Sorry about your issues. That sucks that you didn’t figure it out the first time. On the positive, you probably didn’t follow the standard floxie recovery protocol (avoid NSAIDS, steroids, nonorganic meats) and you still recovered. You seem like a positive person and that should also serve you well.
Today I have the pleasure of dealing with burning feet, one of my all time favorites. 🙂
Hi, a month ago I had an emergency appendectomy (gangrenous and perforated) and was given intravenous Levaquin for four days in the hospital because I had a very bad abdominal infection. My nurse did not like the look of my IV site (two days after it was inserted) in my right ellbow, so she removed it and one was put into my left arm. As soon as it was removed I began having symptoms: difficulty moving my hand and fingers, the feeling that there was a cord in my arm which prevented me from straightening it without stabbing pain, inability to completely bend my wrist, burning, tingling, etc. I mentioned it several times to the nurses and to one of the doctors who weren’t particularly concerned. When I got home, it just got worse. I began having blurry vision. I googled Levaquin and read about the damage it can cause, about the class action suit, etc. The next day I called my surgeon (who sent me home with two oral prescriptions, one for Flagyl and one for Levaquin) and told him I stopped taking them so he put me on Bactrim for the rest of the week.
Since then I have seen a neurologist, hand surgeon, vascular surgeon. No vascular injury. The neurologist thinks I have posterior interosseus nerve injury which he thinks could have been caused by the IV or the Levaquin or both. He said he thinks it will go away in time but, of course, he does not have a crystal ball. The hand surgeon didn’t agree with his diagnosis but could not give one of his own, only that I had some nerve damage that he did not think surgery would make better.
The cord in the arm symptom has gotten better, but my wrist and fingers have gotten worse. Also, three months ago I broke my left collarbone and had surgery for that, so I’m going to physical therapy to get back the use of my left arm. I have not been a happy camper about all that has happened, but the shoulder is healing well and I’m, completely healed from the appendectomy. But I still have this right arm/hand problem and I wonder if the weight training and exercising is inflaming my wrist and fingers.
If anyone has had any similar experience I’d love to hear from you, especially in terms of what I can do to help myself heal.
Thanks,
Kim
Hi everyone. Supposedly magnesium l threonate is the only mag with molecules so small as to enter the brain or access/protect mitochondria. See mercola website. Have anyone ever tried it or ionic mag? Any problems of dizziness from either?
This entire piece and magnesium l threonate sound very interesting…. Any thoughts? Only mag that enters the brain (as the floride from fq’s goes, and also permeates the mitochondrial membrane…where I’d guess it has been depleted from and also protect it?
http://articles.mercola.com/sites/articles/archive/2013/12/08/magnesium-health-benefits.aspx
Chris Ellington
Jul 3 (1 day ago)
to Floxie
For those of us that are into our second year of being floxed, do you know the ways that we can see that we are near to recovery? I’ve gone from 3-to-4 hrs of sleep to now sleeping 7-to-8 hours, which is a definite improvement. However, my memory is still extremely poor. With improvement of sleep, can this mean my memory will probably improve soon? Or, can there be other indicators before memory will return? Thank you! Chris
Has anyone heard or tried either serrapeptase or intenzyme forte? supposed to be good for pain.