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
Paulie
10 years ago
Melanie I was first floxed age 33 in late 2003 (cipro). Took me around 3 years to feel good again, 4 years for next to no traces. The course was relapses worsening for a year or so then relapses improving for the years after. At the time I suspected MS but never knew exactly what it was. Had some more cipro in the intervening time, strangely not enough to relapse. Life was pretty much back to normal.
Anyway this time in May 13 I knew what it all was within 1 minute of taking a single Levaquin pill. Same feelings from 10 years ago. Now fully explained. Both experiences were overseas so I have a new respect for the UK NHS which generally only offers medicine if you are on your death bed, rather than on demand.
So 18 months on here I am, still worsening, or at least new symptoms. I am expecting an elongated stretch this time. Who knows, 6, 8 years? To what eventual outcome, who knows? Still I am able to walk and earn a living so far, which is better than some. I think it will go – eventually the body will regain control. The half life of toxicity determines that it will, but also as one gets older (me, not you!), repairs slow down, so it will probably not be the same relatively rapid course as the earlier floxing.
I know what you mean about the docs. They think i’m crazy. Have given up trying to convince them because it wont get me any further forward. Just make sure I always state my allergy and double check whatever they offer against any research I can find. I shy away from any meds unless absolutely necessary.Take a few vitamins but I honestly dont know if it makes a difference.
I mostly try to keep busy and wherever possible avoid dwelling on the situation. I probably failed today! Just trying to make this period of life as positive as possible because I wont be getting a chance to repeat any wasted years!
all the best.
Daniela
10 years ago
I just found that vigorous rubbing on tendons around the knees makes them feel much better, thanks to a video I stumbled upon by the owner of a tai chi studio, Internal Gardens. She explained that tendons are much slower to heal than muscles because they have far less blood flow, and showed how rough,rapid scissor-like rubbing up and down the sides of the knees promotes that blood flow. I did it yesterday and in a moment I had relief from pain that I’ve had for years. I am using the technique on my achilles tendons as well and it works.
After a very difficult week, I have decided to write a letter to my GP’s nurse. My family and I have been with them for about 20 years. I just couldn’t keep quiet any longer. This is what I wrote:
Vicky,
I am sending this to you because you have always treated me with nothing but respect and compassion. Your understanding and care have meant the world to me during some difficult times.
I have been made to feel in the past year that I am a pain in the butt patient. It seems clear to me (and I could be wrong, but this is how it seems to me) that Dr. Wolf would prefer not to have me as a patient anymore. I have wanted to be seen a number of times this year and was told to go elsewhere or prescribed a medication. And now, I feel like I am being treated like a drug seeker. This pains me because it couldn’t be further from the truth. In fact, pills scare me.
I have been prescribed pain pills numerous times in my life. Most of those times, I didn’t even have the Rx filled. Three times I did. After the birth of my daughter I took them while in the hospital but I never took them once I got home. After my surgery – clearly I needed them. I took small doses for a couple of months and was able to stop them without any difficulty whatsoever. I had to take them as needed for neuropathy pain after that. She prescribed me 10 norco in July. I had one left until yesterday. If I were a pill abuser, those 10 pills would have never lasted four months. I take them when I feel I absolutely NEED them. I honestly do not like taking pills. Right now, I need them. And I know this because when I take a small amount, I can somewhat function (shower, drive, make dinner…) without that help, I can only lay here trying to find a position that doesn’t hurt.
And for the record, while I had no problems stopping the norco post op – I went through HELL getting off Cymbalta a few years back. Horrible. Horrible is the only way to describe it. Everyone is so quick to prescribe Lyrica or Cymbalta or other like meds without realizing what those can do to a person. Yet when I need a little pain medication to get me through a tough time – I am treated like an addict.
Both chiropractors I have seen regularly since surgery have been astounded by what has happened to my body. These adverse reactions from Nitrofurantion are rare. They are seen much more often with fluoroquinlones. But the effects are very similar when it does happen. And it happened to me. I called and called several doctors and even went to the ER while I was taking it. I had almost every single listed adverse reaction. Yet I was told to basically calm down – that I was fine. I wasn’t fine. My liver, nerves, muscles and joints were being attacked. And all of these months later, I am still dealing with the effects. My first chiro (I had to switch due to insurance changes) said that if he hadn’t known better, he would have insisted I was in a terrible car accident. He saw me regularly before surgery and therefore knew this was new.
I have had a number of family members and friends tell me I should take action for being ignored when I was complaining of these issues. My husband is very angry. But I have made it clear that I blame no one. I know this is rare and there are so many medications out there that Drs. cannot possibly have the time to know each study or every side effect. I have had much loyalty to the providers who have cared for me all of these years. All I have wanted was to get better. I am only 40 and do not want to feel 80. I have a child and a life to live.
And while I know these adverse reactions are “rare”, I honestly don’t think they are as rare as what we are told. When this began, it was suggested I had fibromyalgia and prescribed Lyrica. Thank God I didn’t take it because I know I’d have a much harder time stopping that than norco. And that pain I was having went away. I think patients are diagnosed with fibro or lyme or arthritis and these ADRs are never reported or truly understood. So of course they are considered rare. Believe me, I have researched and read so much about this – many people have been through this.
I cannot begin to tell you how hard this year has been. I have tried to be strong. I have tried to do everything I know to do to get better. And I have made incredible strides. I was so excited when my liver numbers came down. I was ecstatic when the neuropathy pain began to fade. I started getting back to exercising and eating super healthy to lose the 20 lbs I have gained since surgery. But then this happened. Out of seemingly nowhere I could barely walk and am in pain that at times feel as intense as labor pains.
I like my Chiropractor a lot. She is wonderful and so smart. But she has limits to what she can do. And having been a patient of Dr. Wolf’s for so very long – I simply needed to have her additional care. I needed some help getting through this pain while having my chiro treatments and waiting to see what a pain clinic would do. I do not want injections into my spine and it sounds like that is what they are all about. I have had enough invasive crap to be quite honest. What if I react poorly to the injection? Its not like I could just stop taking an injection. This is my spine!! I just wanted to speak to a physician who I trust about this and have some pain relief in the meantime. But here I am just waiting for some pain clinic to call while I lay here in bed wasting my life away.
I just want you to know where I am coming from. I want doctors to know that rare stuff really does happen. And I want providers to know that sometimes the patient knows what they are talking about – they sometimes KNOW when something is wrong. I knew I had heart issues for over a decade when they kept telling me it was “just anxiety”. I knew something was wrong when Cassidy kept having tics in her eye movements (heck, I even have it on video). I knew something was very wrong when I was taking that antibiotic. I don’t make this stuff up. I don’t WANT to feel bad. Just the opposite. I understand that medical staff are far to overscheduled and busy and see SO many patients. I get it. But when I do a lot of research and know my body and my child…I want to be respected and heard. And I am telling you all of this because you are one of the very few who have shown me that respect and have listened. So thank you for that.
I am sorry to unload on you this way. But I had to say these things. This is weighing heavily on me. Thank you for listening.
Always in Appreciation,
Heather
Clay
10 years ago
Hi, I am new to this and have just gotten the Cipro poisoning, have been trying to learn as much as I can but my arm is ruined as of right now, I will tell my story if I filled out the below info below correctly.
Clay
10 years ago
Ok looks like it worked, I was scheduled to go in for hand surgery on a Tuesday, my tummy started hurting on Sat night and got worse by Sunday, went to emergency room and was diagnosed withe diverticulitis , they pumped me with cipro and flox, took till the surgery on tues and it had attacked my hand so bad it was untouchable and then my feet and ankles swelled to the point of not being able to walk. Can walk now but arm and hand have been devastated. It has gotten a little better but all my joints are killing me throughout my body and I click ad squeek at every turn and all my bones feel weak.
Clay
10 years ago
Thanks Rene-Thats a ton of info let me digest, just to start the surgeon that was to perform surgery loaded me up with prednisone to get the swelling down the first week, second advil is my only relief???? I am now able to wiggle my fingers after 7 weeks and one Doc suggested a Stellatae Gang block, and was scheduled for wed but I cancelled to see if I had any more movement until next week. That procedure would allow for my hand/wrist to move but my fear is that if I do that I could rip every tendon in my arm??? No and I mean no doc seems to have any info that has treated me????
Tess
10 years ago
I just gets better and better. All unpleasant twitching, tingling, and tremors I had inside the body is gone. Brain fog has lifted and I’ve got more energy again. I still feel that I’m numb inside the body, but do I get back a little more sensation all the time. Though it’s baby steps. My deep depression has also become smaller and I no longer have suicidal thoughts. It is six months since I was floxed. Despite all the progress and improvement dare I not be happy. Who knows what the poison has done? Will there suddenly appear new symptoms? Tiresome to constantly feel scared and worried.
I am 40 years old. I had very mild degenerative joint disease before my toxicity. I had achiness and stiffness here and there. Other than that – no real serious issues with my back.
This past week I was diagnosed with annular tear, bulging disc, moderate facet arthritis (spine) and SI joint dysfunction. No accident. I have no idea what I did to make this pop up suddenly a little over one week ago.
What are the chances this is related to the toxicity? And how?
Jake
10 years ago
I wonder if stem cells will help with this condition in the future.
Michael Teeter
10 years ago
Well I came back from the dentist and he is referring me to an Oral Surgeon who was Floxed by Levaquin and suffered tendon ruptures. Wow a small world.
Jake
9 years ago
It would make you think stem cells have the potential even for nerve damage, a recent report said they may have figured how to fix damaged nerves from parkinsons… that’s pretty exciting news for anyone with an illness.. Stem Cells might be the answer to a lot of things.. I wish people would stop fighting progress of it.. Hopefully we don’t have any future politicans that halt progress, that would really suck.
Catherine
9 years ago
Hi everyone
Does anyone know if Cumanda, Banderol and Lakato are ok for floxed people to use to treat Lyme and co infections?
Josie
9 years ago
Hey you guys! How is everyone doing? Long time no talk! 🙂
Jake
9 years ago
Catherine you’re a lyme patient too? It seems like half of those floxed are lyme patiens.. I wonder why. I also want to suggest japanese knotweed for pain, it’s pretty great.
Michael Teeter
9 years ago
Just FYI Gang
Herbs used for Pain
Bugleweed, Calendula, Catnip, Chamomile, Chaparral, Feverfew, Hops, Sarsaparilla, Scullcap, Valerian, and Yucca.
If you have not already researched these already check them out. It may be worth it.
Mike
Michael Teeter
9 years ago
I love recipes! Just so you guys know. My mother makes home made old fashioned soap and muscle rubs. She also has a collection of essential oils. So I love it and of course I love her.
I know some of you use essential oils and have a group on face book. I think that is great.
I think I am going to start sharing recipes that I think have helped me and may help other floxies.
Melanie Kemp
9 years ago
I hope this means something and not just a fluke.
Yesterday when I cried I had more tears than usual. Rolled down my face.
Today I blew my nose for the first time in months and I had 2 almost normal BMs. Ive been constipated for months.
Everything else is the same but maybe I should be grateful for small things.
It’s my 35th birthday and my 3 year floxiversary. The first year sucked. The second year was better. The third year was even better. Hang in there, friends! xoxo
I posted this on the other page but this truly scared me and I am just wondering if others have had this happen. About an hour ago, I started feeling strange like something was wrong within my body. Like an impending doom. I truly thought I was dying. I couldn’t put my finger on where it was coming from and I wasn’t in a full blown panic attack. I had the panic attack afterwards because of the weird sensation. My husband took my blood pressure and it was ok. Is this my CNS playing tricks on me? I thought about going to the ER but knew they would just say anxiety/depression. It truly scared me…BTW I am 2 months out. First one like this.
Thanks for helping me.
Happy b day Lisa…can u shoot me an email at tracibryan02@gmail.com. I have lost hearing from this reaction and I was wondering if u know anything about this. Thankyou
Melanie I was first floxed age 33 in late 2003 (cipro). Took me around 3 years to feel good again, 4 years for next to no traces. The course was relapses worsening for a year or so then relapses improving for the years after. At the time I suspected MS but never knew exactly what it was. Had some more cipro in the intervening time, strangely not enough to relapse. Life was pretty much back to normal.
Anyway this time in May 13 I knew what it all was within 1 minute of taking a single Levaquin pill. Same feelings from 10 years ago. Now fully explained. Both experiences were overseas so I have a new respect for the UK NHS which generally only offers medicine if you are on your death bed, rather than on demand.
So 18 months on here I am, still worsening, or at least new symptoms. I am expecting an elongated stretch this time. Who knows, 6, 8 years? To what eventual outcome, who knows? Still I am able to walk and earn a living so far, which is better than some. I think it will go – eventually the body will regain control. The half life of toxicity determines that it will, but also as one gets older (me, not you!), repairs slow down, so it will probably not be the same relatively rapid course as the earlier floxing.
I know what you mean about the docs. They think i’m crazy. Have given up trying to convince them because it wont get me any further forward. Just make sure I always state my allergy and double check whatever they offer against any research I can find. I shy away from any meds unless absolutely necessary.Take a few vitamins but I honestly dont know if it makes a difference.
I mostly try to keep busy and wherever possible avoid dwelling on the situation. I probably failed today! Just trying to make this period of life as positive as possible because I wont be getting a chance to repeat any wasted years!
all the best.
I just found that vigorous rubbing on tendons around the knees makes them feel much better, thanks to a video I stumbled upon by the owner of a tai chi studio, Internal Gardens. She explained that tendons are much slower to heal than muscles because they have far less blood flow, and showed how rough,rapid scissor-like rubbing up and down the sides of the knees promotes that blood flow. I did it yesterday and in a moment I had relief from pain that I’ve had for years. I am using the technique on my achilles tendons as well and it works.
http://www.youtube.com/watch?v=p3ChZziyU6Q
Perhaps some pharma “solutions” are nothing more than systemic ways to promote blood flow at the risk of myriad side effects.
After a very difficult week, I have decided to write a letter to my GP’s nurse. My family and I have been with them for about 20 years. I just couldn’t keep quiet any longer. This is what I wrote:
Vicky,
I am sending this to you because you have always treated me with nothing but respect and compassion. Your understanding and care have meant the world to me during some difficult times.
I have been made to feel in the past year that I am a pain in the butt patient. It seems clear to me (and I could be wrong, but this is how it seems to me) that Dr. Wolf would prefer not to have me as a patient anymore. I have wanted to be seen a number of times this year and was told to go elsewhere or prescribed a medication. And now, I feel like I am being treated like a drug seeker. This pains me because it couldn’t be further from the truth. In fact, pills scare me.
I have been prescribed pain pills numerous times in my life. Most of those times, I didn’t even have the Rx filled. Three times I did. After the birth of my daughter I took them while in the hospital but I never took them once I got home. After my surgery – clearly I needed them. I took small doses for a couple of months and was able to stop them without any difficulty whatsoever. I had to take them as needed for neuropathy pain after that. She prescribed me 10 norco in July. I had one left until yesterday. If I were a pill abuser, those 10 pills would have never lasted four months. I take them when I feel I absolutely NEED them. I honestly do not like taking pills. Right now, I need them. And I know this because when I take a small amount, I can somewhat function (shower, drive, make dinner…) without that help, I can only lay here trying to find a position that doesn’t hurt.
And for the record, while I had no problems stopping the norco post op – I went through HELL getting off Cymbalta a few years back. Horrible. Horrible is the only way to describe it. Everyone is so quick to prescribe Lyrica or Cymbalta or other like meds without realizing what those can do to a person. Yet when I need a little pain medication to get me through a tough time – I am treated like an addict.
Both chiropractors I have seen regularly since surgery have been astounded by what has happened to my body. These adverse reactions from Nitrofurantion are rare. They are seen much more often with fluoroquinlones. But the effects are very similar when it does happen. And it happened to me. I called and called several doctors and even went to the ER while I was taking it. I had almost every single listed adverse reaction. Yet I was told to basically calm down – that I was fine. I wasn’t fine. My liver, nerves, muscles and joints were being attacked. And all of these months later, I am still dealing with the effects. My first chiro (I had to switch due to insurance changes) said that if he hadn’t known better, he would have insisted I was in a terrible car accident. He saw me regularly before surgery and therefore knew this was new.
I have had a number of family members and friends tell me I should take action for being ignored when I was complaining of these issues. My husband is very angry. But I have made it clear that I blame no one. I know this is rare and there are so many medications out there that Drs. cannot possibly have the time to know each study or every side effect. I have had much loyalty to the providers who have cared for me all of these years. All I have wanted was to get better. I am only 40 and do not want to feel 80. I have a child and a life to live.
And while I know these adverse reactions are “rare”, I honestly don’t think they are as rare as what we are told. When this began, it was suggested I had fibromyalgia and prescribed Lyrica. Thank God I didn’t take it because I know I’d have a much harder time stopping that than norco. And that pain I was having went away. I think patients are diagnosed with fibro or lyme or arthritis and these ADRs are never reported or truly understood. So of course they are considered rare. Believe me, I have researched and read so much about this – many people have been through this.
I cannot begin to tell you how hard this year has been. I have tried to be strong. I have tried to do everything I know to do to get better. And I have made incredible strides. I was so excited when my liver numbers came down. I was ecstatic when the neuropathy pain began to fade. I started getting back to exercising and eating super healthy to lose the 20 lbs I have gained since surgery. But then this happened. Out of seemingly nowhere I could barely walk and am in pain that at times feel as intense as labor pains.
I like my Chiropractor a lot. She is wonderful and so smart. But she has limits to what she can do. And having been a patient of Dr. Wolf’s for so very long – I simply needed to have her additional care. I needed some help getting through this pain while having my chiro treatments and waiting to see what a pain clinic would do. I do not want injections into my spine and it sounds like that is what they are all about. I have had enough invasive crap to be quite honest. What if I react poorly to the injection? Its not like I could just stop taking an injection. This is my spine!! I just wanted to speak to a physician who I trust about this and have some pain relief in the meantime. But here I am just waiting for some pain clinic to call while I lay here in bed wasting my life away.
I just want you to know where I am coming from. I want doctors to know that rare stuff really does happen. And I want providers to know that sometimes the patient knows what they are talking about – they sometimes KNOW when something is wrong. I knew I had heart issues for over a decade when they kept telling me it was “just anxiety”. I knew something was wrong when Cassidy kept having tics in her eye movements (heck, I even have it on video). I knew something was very wrong when I was taking that antibiotic. I don’t make this stuff up. I don’t WANT to feel bad. Just the opposite. I understand that medical staff are far to overscheduled and busy and see SO many patients. I get it. But when I do a lot of research and know my body and my child…I want to be respected and heard. And I am telling you all of this because you are one of the very few who have shown me that respect and have listened. So thank you for that.
I am sorry to unload on you this way. But I had to say these things. This is weighing heavily on me. Thank you for listening.
Always in Appreciation,
Heather
Hi, I am new to this and have just gotten the Cipro poisoning, have been trying to learn as much as I can but my arm is ruined as of right now, I will tell my story if I filled out the below info below correctly.
Ok looks like it worked, I was scheduled to go in for hand surgery on a Tuesday, my tummy started hurting on Sat night and got worse by Sunday, went to emergency room and was diagnosed withe diverticulitis , they pumped me with cipro and flox, took till the surgery on tues and it had attacked my hand so bad it was untouchable and then my feet and ankles swelled to the point of not being able to walk. Can walk now but arm and hand have been devastated. It has gotten a little better but all my joints are killing me throughout my body and I click ad squeek at every turn and all my bones feel weak.
Thanks Rene-Thats a ton of info let me digest, just to start the surgeon that was to perform surgery loaded me up with prednisone to get the swelling down the first week, second advil is my only relief???? I am now able to wiggle my fingers after 7 weeks and one Doc suggested a Stellatae Gang block, and was scheduled for wed but I cancelled to see if I had any more movement until next week. That procedure would allow for my hand/wrist to move but my fear is that if I do that I could rip every tendon in my arm??? No and I mean no doc seems to have any info that has treated me????
I just gets better and better. All unpleasant twitching, tingling, and tremors I had inside the body is gone. Brain fog has lifted and I’ve got more energy again. I still feel that I’m numb inside the body, but do I get back a little more sensation all the time. Though it’s baby steps. My deep depression has also become smaller and I no longer have suicidal thoughts. It is six months since I was floxed. Despite all the progress and improvement dare I not be happy. Who knows what the poison has done? Will there suddenly appear new symptoms? Tiresome to constantly feel scared and worried.
What do you think?
I am 40 years old. I had very mild degenerative joint disease before my toxicity. I had achiness and stiffness here and there. Other than that – no real serious issues with my back.
This past week I was diagnosed with annular tear, bulging disc, moderate facet arthritis (spine) and SI joint dysfunction. No accident. I have no idea what I did to make this pop up suddenly a little over one week ago.
What are the chances this is related to the toxicity? And how?
I wonder if stem cells will help with this condition in the future.
Well I came back from the dentist and he is referring me to an Oral Surgeon who was Floxed by Levaquin and suffered tendon ruptures. Wow a small world.
It would make you think stem cells have the potential even for nerve damage, a recent report said they may have figured how to fix damaged nerves from parkinsons… that’s pretty exciting news for anyone with an illness.. Stem Cells might be the answer to a lot of things.. I wish people would stop fighting progress of it.. Hopefully we don’t have any future politicans that halt progress, that would really suck.
Hi everyone
Does anyone know if Cumanda, Banderol and Lakato are ok for floxed people to use to treat Lyme and co infections?
Hey you guys! How is everyone doing? Long time no talk! 🙂
Catherine you’re a lyme patient too? It seems like half of those floxed are lyme patiens.. I wonder why. I also want to suggest japanese knotweed for pain, it’s pretty great.
Just FYI Gang
Herbs used for Pain
Bugleweed, Calendula, Catnip, Chamomile, Chaparral, Feverfew, Hops, Sarsaparilla, Scullcap, Valerian, and Yucca.
If you have not already researched these already check them out. It may be worth it.
Mike
I love recipes! Just so you guys know. My mother makes home made old fashioned soap and muscle rubs. She also has a collection of essential oils. So I love it and of course I love her.
I know some of you use essential oils and have a group on face book. I think that is great.
I think I am going to start sharing recipes that I think have helped me and may help other floxies.
I hope this means something and not just a fluke.
Yesterday when I cried I had more tears than usual. Rolled down my face.
Today I blew my nose for the first time in months and I had 2 almost normal BMs. Ive been constipated for months.
Everything else is the same but maybe I should be grateful for small things.
It’s my 35th birthday and my 3 year floxiversary. The first year sucked. The second year was better. The third year was even better. Hang in there, friends! xoxo
Happy Birthday , Lisa !
I posted this on the other page but this truly scared me and I am just wondering if others have had this happen. About an hour ago, I started feeling strange like something was wrong within my body. Like an impending doom. I truly thought I was dying. I couldn’t put my finger on where it was coming from and I wasn’t in a full blown panic attack. I had the panic attack afterwards because of the weird sensation. My husband took my blood pressure and it was ok. Is this my CNS playing tricks on me? I thought about going to the ER but knew they would just say anxiety/depression. It truly scared me…BTW I am 2 months out. First one like this.
Thanks for helping me.
Happy b day Lisa…can u shoot me an email at tracibryan02@gmail.com. I have lost hearing from this reaction and I was wondering if u know anything about this. Thankyou