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My ND has prescribed me a product to get rid of pathogenic bacteria in my gut – it contains grapefruit extract. I think I read somewhere that floxed people shouldn’t have grapefruit – does anyone know if that is correct? And why?
Tess
10 years ago
I have started eating krill oil. It will be good for many ailments including poisoning. Krill oil is the purest omega3 oil available. It does not contain much heavy metals. Maybe could be something for you who have been poisoned by Cipro.
Hello everyone,
Here is my latest update. My doc called me Sunday. She talked with my ND and they ran my DNA results (the raw data through the DNA genie program) it was my 23andme test.
They found out I am MTHFR positive. That and because I am allergic to Sulfa Drugs it makes Methotrexate off the table anyway. She said the only drug available to me is Plaquenil (Hydroxchloroquine). Seeings I decided to take the Blue pill in the first place.
I am reluctant to go down that road again. I also want to walk again. So this is my dilemma
I am facing. http://ghr.nlm.nih.gov/gene/MTHFR http://en.wikipedia.org/wiki/Hydroxychloroquine
Michael
melanie kemp
10 years ago
I had a long tough talk with my Mum today. Then my hubby. I talked about whats happening to me and how I couldn’t really do this for much longer. I have a day or two where I can do some things but then I’m thrown back down into hell. Ive never been a person that relies on others to get things done, If it needs doing i’ll tackle it. I find myself completely reliant on my husband for most everything. I have system wide failiers.. from my hair falling out to a loss of 50 pounds to sore gums to skin drying up and wrinkling to pins and needles to burning to feeling drunk 24/7 to nausea to cant eat more than a handful of things to constipation…..anyways You get the idea. I can deal with pain but this is to much. My body has completely broken down. I don’t think I was this bad with my initial floxing in 2010 so I don’t know why a relapse would be worse. I mean same things going on except now I have the hair falling out and my skin is more wide spead than back then. So the talk I had with my Mum and Hubby was about ending it all. I don’t feel sad or hysterical anymore. I guess ive become resigned. Kind of in this place of just feeling nothing now. Of course this conversation was difficult and although the both of them are distraught I think they also understand how debilitating this is. That every day consists of the same thing for me and how its not living its just surviving. So anyways. I know some of you will understand my thinking. As hard as it is .Who really wants to be in horrible pain everyday and living in a dark bedroom and just waiting for night to come so you can sleep a few hours and get out of this hell only to wake up and face it all over again. This is month 6 of this relapse… how is that even a relapse???? Its like being floxed all over again. My Mum asked me to wait…think about it.. give it til after Xmas then we would talk about it again. I know where she’s going with this. I know she’s distraught and cant see a way around getting me better. She’s talked to me several times a day for 6 months now and she lives in England but she calls everyday and stays on the phone for hours. She understand what I’m dealing with (as much as any non floxed person can). Shes hanging on and hoping that things will turn around for me. I just don’t feel like they will. I just wanted those close to me to understand my decision. I’m not crazy or depressed. I just don’t want to live this life everyday. It is NO life.
melanie kemp
10 years ago
Hi Lisa and Karen. I know you both understand.. only floxies really do. Thank you so much for youre kind words. Lisa I was reading Erins story as I do often because she seemed to have a severe reaction like myself. I also found a blog she wrote on essential oils to repair her gut which led to her healing. Ive tried to E mail her at the address she had listed on her story but heard nothing back and her facebook page etc is no longer available. Do you have anyway of getting in touch with her Lisa? I want to try the oils. I found them on Amazon but not sure how to topically use them. I’m so sensitive to ingesting most everything I don’t think I can do it that way. I mean I can try but that leads to maybe making things worse and I hate going that route. I guess its a last ditch effort to see if it makes a difference because I know the gut has a lot to do with healing and mine is truly messed up. It was before but just healed by itself somehow and I think that’s what led to my recovery last time. So anyways Lisa..not sure if you are able to get in touch with her or not.. I can just wing it if I have to.. what have I got to lose at this point .If you can maybe you can give her my E mail address and ask her to get in touch. If not..no problem :)And Lisa…any suggestions you have would be great…keeping in mind I cant really eat to many things.. cant do the Epsom salt baths either..makes me worse and hurts my skin..my skin is very sore and sensitive. Looks like I’m 100 yrs old.
melanie kemp
10 years ago
Thank you Lisa and Catherine. Ill check out that FB page Catherine and Lisa that would be great. I ordered the essential oils from Amazon just now so we shall see.
melanie kemp
10 years ago
Catherine. That page didn’t come up on FaceBook.. is there a link you can send me..
melanie kemp
10 years ago
sorry I meant Lisa
melanie kemp
10 years ago
Thanks Mark. That’s exactly what I tried to tell my Mum.. nobody wants to live like this because its not living .She understand my reasoning… of course its heart breaking to her but she understands. That’s all I can hope for if such a time comes. Yes I did get through it once but in this other dimension that really means nothing. I didn’t try anything last time..just got better… how I did it I don’t know. Was just my time I guess. Was I 100%. No.Looking back I had background stuff going on that had I known what it was I could have taken better care, Who knows if it would have helped. I’m hanging in there…not sure for how long but time will tell.
Daniela
10 years ago
I wouldn’t take plaquenil, which is an immunosuppressant, or buy doterra brand essential oil, which is sold through leveraged marketing.
I wouldn’t do what brought me to this horrific nightmare of five years without respite, namely take a pill or shot or magic bullet for anything. Not going to happen again. I’m also not going to fall for schemes to take away what tiny bit of money, and dignity, I have left.
What is the worst symptom you have? Start there and chip away. If it’s your achilles tendons, concentrate on soothing just that. If it’s insomnia, work only on that for the time being (chamomile, not sleeping pills!)
For tendons, powdered turmeric on them. For nervousness, lavender scent (dried flowers, essential oil) really helps. I have never found a decent essential oil of lavender in the US. If you can get it from England — you’re so lucky and please send me some!!!!!
melanie kemp
10 years ago
Daniela. I should ask my Mum to send me some lavender oil. She lives in England
Daniela
10 years ago
Thank you, Lisa. That means so much coming from you. You’re a Goddess!
Melanie, that’s perfect. You know, lavender is really the most useful and most used of the essential oils and might be the only one you need. I had one from a company called Bay House in UK, so much more effective than anything I have bought in the US since. I slept like a baby when I had that bottle going. I hope you remember to get some for me, too!!!
The other to-die-for lavender I had were the actual dried buds from the island of Hvar in the Adriatic sea. I wish I could remember smells, instead of only being reminded of them. Just a few drops on the pillow, in some massage oil, in a bath, on a lightbulb (when it’s cool and let it dry before you turn it on, don’t ask how I know this) — everyone who comes to visit will say, What is that gorgeous smell??? And then they will be putty in your hands.
Lorna
10 years ago
Hi all,
I was wondering when is the right time to write your story?
No I am not recovered 100 percent, I still have a popping hip back and joints but my life is returning, and I really want to send out a message of hope to the newly floxed!
This time last year I was so afraid and never stopped crying people around me know what’s wrong with me now, and I’d like to share how far I’ve come with others.
Do you have to be fully recovered?
Wishing you all the best and hope we all get to out 100 percent mark one day 🙂 Lorna X
Jake
10 years ago
Hey guys, I’m a lyme patient, and I got treated with levaquin and of course took the treatment without researching because nobody warned me. Anyways, I’m pretty positive I’m floxing, I’m get mild tingling and vibrations in my feet, legs and back… My mouth is dry when sleeping, weird vivid dreams, still calfs and ankles, but I seem to be able to walk fine.. cracking sound in a bunch of joints, feel some anxiety and some visual stuff, but I can still see. I’m only 5 days post of this, so I know I’m in the very beginning and I need to get my butt moving to get better instead of feeling bad for myself. It’s all tolerable, but the buzzing and tingling is getting really annoying. what steps should I take.. Based on my symptoms how does it sound? From what I’m reading my reaction sound like it’s in the middle, and I’ll probably recover but it’s going to take a long time… Also what’s up with this NDA therapy? I’ve hear from like three floxed people getting cured from this. I want to get better, I know some of this can be permanent, but If I can get back to at least 90 percent, and have my mental and vision symptoms normal, I would be pretty happy, I already accepted long term damage from my lyme disease.. Thanks! I like to ask a lot of questions lol
I’m a 22 year old male.
rich
10 years ago
did you have vision issues lorna and did they resolve…. ive had my eyes checked and they are ok and the flashes are dying down and the feeling of my eyes being pulled out of my head are less…….I can see fine but my vision just feels different……maybe its the dry eyes..
I tried taking digestive enzymes today, and now have severe anxiety symptoms and rapid heart rate. Is this a coincidence, or has anyone else had this reaction?
KX
10 years ago
Has anyone had to use metrogel post floxing? Cipro caused other infections by disturbing the natural bacterial flora and I have been trying to let my body heal itself and add probiotics but it is not working so far. I read some side effects from flagyl (oral form of metrogel) and they list numbness and neuropathy. And this antibiotic works at the DNA / RNA level of the bacteria as well which scares me so much.
The doctor said that given the gel form it is less likely to cause systemic side effects but I don’t trust any doctor at this point. Anyone has had any relevant experience post floxing with this?
It’s a bit cheesy (and huge), and I always feel awkward when I give pep-talks. Life is complex. Sometimes you feel horrible – that’s okay and there’s no point in denying it. BUT… I really liked this and I think there is a lot of truth to it. Hugs to all!
rich
10 years ago
thanks melanie… eyes are the most important…. also good pic lisa
dannnnnnni
10 years ago
I almost recovered after two years (24 months) but then dental surgery put me into a much worse state. It’s been three years since then and I still have problems. But I was given so much more cipro than anyone here I have read about, 750 mg twice a day, then IV, then again 750 mg twice a day, even though it had no effect and is not considered to be useful for that illness.
i do find that working on the stomach helps more than anything else.
i wonder, is there anyone here who was given as much as I was, or has been going through this as long as me?
My ND has prescribed me a product to get rid of pathogenic bacteria in my gut – it contains grapefruit extract. I think I read somewhere that floxed people shouldn’t have grapefruit – does anyone know if that is correct? And why?
I have started eating krill oil. It will be good for many ailments including poisoning. Krill oil is the purest omega3 oil available. It does not contain much heavy metals. Maybe could be something for you who have been poisoned by Cipro.
Hello everyone,
Here is my latest update. My doc called me Sunday. She talked with my ND and they ran my DNA results (the raw data through the DNA genie program) it was my 23andme test.
They found out I am MTHFR positive. That and because I am allergic to Sulfa Drugs it makes Methotrexate off the table anyway. She said the only drug available to me is Plaquenil (Hydroxchloroquine). Seeings I decided to take the Blue pill in the first place.
I am reluctant to go down that road again. I also want to walk again. So this is my dilemma
I am facing.
http://ghr.nlm.nih.gov/gene/MTHFR
http://en.wikipedia.org/wiki/Hydroxychloroquine
Michael
I had a long tough talk with my Mum today. Then my hubby. I talked about whats happening to me and how I couldn’t really do this for much longer. I have a day or two where I can do some things but then I’m thrown back down into hell. Ive never been a person that relies on others to get things done, If it needs doing i’ll tackle it. I find myself completely reliant on my husband for most everything. I have system wide failiers.. from my hair falling out to a loss of 50 pounds to sore gums to skin drying up and wrinkling to pins and needles to burning to feeling drunk 24/7 to nausea to cant eat more than a handful of things to constipation…..anyways You get the idea. I can deal with pain but this is to much. My body has completely broken down. I don’t think I was this bad with my initial floxing in 2010 so I don’t know why a relapse would be worse. I mean same things going on except now I have the hair falling out and my skin is more wide spead than back then. So the talk I had with my Mum and Hubby was about ending it all. I don’t feel sad or hysterical anymore. I guess ive become resigned. Kind of in this place of just feeling nothing now. Of course this conversation was difficult and although the both of them are distraught I think they also understand how debilitating this is. That every day consists of the same thing for me and how its not living its just surviving. So anyways. I know some of you will understand my thinking. As hard as it is .Who really wants to be in horrible pain everyday and living in a dark bedroom and just waiting for night to come so you can sleep a few hours and get out of this hell only to wake up and face it all over again. This is month 6 of this relapse… how is that even a relapse???? Its like being floxed all over again. My Mum asked me to wait…think about it.. give it til after Xmas then we would talk about it again. I know where she’s going with this. I know she’s distraught and cant see a way around getting me better. She’s talked to me several times a day for 6 months now and she lives in England but she calls everyday and stays on the phone for hours. She understand what I’m dealing with (as much as any non floxed person can). Shes hanging on and hoping that things will turn around for me. I just don’t feel like they will. I just wanted those close to me to understand my decision. I’m not crazy or depressed. I just don’t want to live this life everyday. It is NO life.
Hi Lisa and Karen. I know you both understand.. only floxies really do. Thank you so much for youre kind words. Lisa I was reading Erins story as I do often because she seemed to have a severe reaction like myself. I also found a blog she wrote on essential oils to repair her gut which led to her healing. Ive tried to E mail her at the address she had listed on her story but heard nothing back and her facebook page etc is no longer available. Do you have anyway of getting in touch with her Lisa? I want to try the oils. I found them on Amazon but not sure how to topically use them. I’m so sensitive to ingesting most everything I don’t think I can do it that way. I mean I can try but that leads to maybe making things worse and I hate going that route. I guess its a last ditch effort to see if it makes a difference because I know the gut has a lot to do with healing and mine is truly messed up. It was before but just healed by itself somehow and I think that’s what led to my recovery last time. So anyways Lisa..not sure if you are able to get in touch with her or not.. I can just wing it if I have to.. what have I got to lose at this point .If you can maybe you can give her my E mail address and ask her to get in touch. If not..no problem :)And Lisa…any suggestions you have would be great…keeping in mind I cant really eat to many things.. cant do the Epsom salt baths either..makes me worse and hurts my skin..my skin is very sore and sensitive. Looks like I’m 100 yrs old.
Thank you Lisa and Catherine. Ill check out that FB page Catherine and Lisa that would be great. I ordered the essential oils from Amazon just now so we shall see.
Catherine. That page didn’t come up on FaceBook.. is there a link you can send me..
sorry I meant Lisa
Thanks Mark. That’s exactly what I tried to tell my Mum.. nobody wants to live like this because its not living .She understand my reasoning… of course its heart breaking to her but she understands. That’s all I can hope for if such a time comes. Yes I did get through it once but in this other dimension that really means nothing. I didn’t try anything last time..just got better… how I did it I don’t know. Was just my time I guess. Was I 100%. No.Looking back I had background stuff going on that had I known what it was I could have taken better care, Who knows if it would have helped. I’m hanging in there…not sure for how long but time will tell.
I wouldn’t take plaquenil, which is an immunosuppressant, or buy doterra brand essential oil, which is sold through leveraged marketing.
I wouldn’t do what brought me to this horrific nightmare of five years without respite, namely take a pill or shot or magic bullet for anything. Not going to happen again. I’m also not going to fall for schemes to take away what tiny bit of money, and dignity, I have left.
What is the worst symptom you have? Start there and chip away. If it’s your achilles tendons, concentrate on soothing just that. If it’s insomnia, work only on that for the time being (chamomile, not sleeping pills!)
For tendons, powdered turmeric on them. For nervousness, lavender scent (dried flowers, essential oil) really helps. I have never found a decent essential oil of lavender in the US. If you can get it from England — you’re so lucky and please send me some!!!!!
Daniela. I should ask my Mum to send me some lavender oil. She lives in England
Thank you, Lisa. That means so much coming from you. You’re a Goddess!
Melanie, that’s perfect. You know, lavender is really the most useful and most used of the essential oils and might be the only one you need. I had one from a company called Bay House in UK, so much more effective than anything I have bought in the US since. I slept like a baby when I had that bottle going. I hope you remember to get some for me, too!!!
The other to-die-for lavender I had were the actual dried buds from the island of Hvar in the Adriatic sea. I wish I could remember smells, instead of only being reminded of them. Just a few drops on the pillow, in some massage oil, in a bath, on a lightbulb (when it’s cool and let it dry before you turn it on, don’t ask how I know this) — everyone who comes to visit will say, What is that gorgeous smell??? And then they will be putty in your hands.
Hi all,
I was wondering when is the right time to write your story?
No I am not recovered 100 percent, I still have a popping hip back and joints but my life is returning, and I really want to send out a message of hope to the newly floxed!
This time last year I was so afraid and never stopped crying people around me know what’s wrong with me now, and I’d like to share how far I’ve come with others.
Do you have to be fully recovered?
Wishing you all the best and hope we all get to out 100 percent mark one day 🙂 Lorna X
Hey guys, I’m a lyme patient, and I got treated with levaquin and of course took the treatment without researching because nobody warned me. Anyways, I’m pretty positive I’m floxing, I’m get mild tingling and vibrations in my feet, legs and back… My mouth is dry when sleeping, weird vivid dreams, still calfs and ankles, but I seem to be able to walk fine.. cracking sound in a bunch of joints, feel some anxiety and some visual stuff, but I can still see. I’m only 5 days post of this, so I know I’m in the very beginning and I need to get my butt moving to get better instead of feeling bad for myself. It’s all tolerable, but the buzzing and tingling is getting really annoying. what steps should I take.. Based on my symptoms how does it sound? From what I’m reading my reaction sound like it’s in the middle, and I’ll probably recover but it’s going to take a long time… Also what’s up with this NDA therapy? I’ve hear from like three floxed people getting cured from this. I want to get better, I know some of this can be permanent, but If I can get back to at least 90 percent, and have my mental and vision symptoms normal, I would be pretty happy, I already accepted long term damage from my lyme disease.. Thanks! I like to ask a lot of questions lol
I’m a 22 year old male.
did you have vision issues lorna and did they resolve…. ive had my eyes checked and they are ok and the flashes are dying down and the feeling of my eyes being pulled out of my head are less…….I can see fine but my vision just feels different……maybe its the dry eyes..
I tried taking digestive enzymes today, and now have severe anxiety symptoms and rapid heart rate. Is this a coincidence, or has anyone else had this reaction?
Has anyone had to use metrogel post floxing? Cipro caused other infections by disturbing the natural bacterial flora and I have been trying to let my body heal itself and add probiotics but it is not working so far. I read some side effects from flagyl (oral form of metrogel) and they list numbness and neuropathy. And this antibiotic works at the DNA / RNA level of the bacteria as well which scares me so much.
The doctor said that given the gel form it is less likely to cause systemic side effects but I don’t trust any doctor at this point. Anyone has had any relevant experience post floxing with this?
It’s a bit cheesy (and huge), and I always feel awkward when I give pep-talks. Life is complex. Sometimes you feel horrible – that’s okay and there’s no point in denying it. BUT… I really liked this and I think there is a lot of truth to it. Hugs to all!
thanks melanie… eyes are the most important…. also good pic lisa
I almost recovered after two years (24 months) but then dental surgery put me into a much worse state. It’s been three years since then and I still have problems. But I was given so much more cipro than anyone here I have read about, 750 mg twice a day, then IV, then again 750 mg twice a day, even though it had no effect and is not considered to be useful for that illness.
i do find that working on the stomach helps more than anything else.
i wonder, is there anyone here who was given as much as I was, or has been going through this as long as me?