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SM
9 years ago
I avoided alcohol for the most part during year one. Not any more. I have less than I used to but I do have a few beers here and there with friends. Tonight was one of those nights. What surprises me is that for all the floxies who talk about alcohol as if it makes their bodies react negatively, my body is the opposite. After 2-3 drinks, I feel so much better. Why? Does the alcohol just numb the pain? Or is it more about vasodilation? My feet are toasty rather than cold and achy. Thoughts? I could just have 2 beers for breakfast every day. Then 2 more at lunch. Then 2 more at dinner. 🙂
Jason
9 years ago
This post is “mostly” geared to Women here that are low in Iodine and/or thinking of taking Iodine, as there is some good info on Cysts, estrogen and other stuff like how critical diet is for anyone polycystic which is all too common. It also mentions the importance of tyrosine for Iodine intake, I have not verified that but don’t doubt its validity considering the source.
This is someone at Curezone quoting Ted from Earth Clinic, Ted is the most knowledgeable person at Earth Clinic.
Note Ted is NOT talking about Iodine in regards to a Floxed person, he is only talking about people with other ailments supplementing with Iodine in general. He also mentions how Chlorine another Halide also competes with Iodine something I forgot to mention in the discussion further up, and everyone’s water has this (He also mentions Bromine is not just in Bread but potentially in any products with white Flour).
My wife’s Naturalpath discussed with her a lot of the same information as she has cyst issues in Breasts and Ovaries so I thought this would be good timely info to share.
SM
9 years ago
I’m pretty much doing the gym on a daily basis now, maybe 5-6 days per week. The workouts are short, maybe 20-25 minutes. I do weights 2 times per week- I want to give my body lots of rest. I do biking intervals the other days. I’m also doing lots of foam rolling (and have been for 2 months). This may all hurt me or help me or not make any difference. But screw it- I’ve been patient for a long time. And I feel almost normal when I’m working out. It’s more than mental too. My feet are calm when I’m working out. Must be the blood flow.
Rene
9 years ago
I made quite a few typos….sorry not wearing my glasses and sleepy to boot. Lastly, genetics play a substantial role and therefore we see the details do matter.
tricia
9 years ago
Does anyone know if burning pain can also be a sign of nerve regeneration?? I had PN symptoms when I first got floxed, but most of that went away in February of this year. For the last day or two now I’ve had burning / tingling sensation all over. I’d hate to think my PN returned!!! I did read somewhere that burning can be a sign of nerve damage and also nerves healing. I just don’t know. Is anyone else familiar w this??
SM
9 years ago
Rene (or anyone else)- A question on magnesium. I have switched from glycinate to citrate based on your thoughts. I’ve noticed from your past comments that you suggest about 400 mg per day, which is pretty much the RDA.
Based on what I’ve read elsewhere, people should use the bowel tolerance gauge to measure how much to take. I thought citrate would affect my digestive system easily, but I’ve found I can take 700 mg of Natural Calm and still not have my bowels affected (sorry for the detail).
My thinking is that I should take that much if my body isn’t letting me know it’s too much. Thoughts? Thank you!
Linda Livingston
9 years ago
OK, this has been my month (well June) to contact as many pubic officials and news agencies as I could. I have contacted members of congress, congressional committees, public agencies, even the president. (I was thrilled to get a call from someone regarding my writing to the White House, only to find out she was with a mental health agency and was calling because I had the word “suicide” listed in side effects. Sigh.) I have written ProPublica, NPR, watchdog groups, and more. It is astounding this has been going on for so many decades and yet is still such an enormous secret, as far as doctors and the rest are concerned. And it is really time for the toothless, impotent FDA to go or have a serious makeover. I encourage everyone to write their representatives and anyone else they can think of that might be a more public voice.
Something I should leave here as my symptoms have been acting up today. Due to stress. Sometimes you might think a website like this is over publicizing ‘hope’. Though the reality is if stress/depression can cause a refloxing any level of ‘positive or decisive determination’ is greater than any supplement or treatment for Floxing.
Sure, don’t take Cipro again. Don’t allow someone to poke you in the butt with a syringe of X drug. Though(!) a lot of us may have a non-linear path of healing. Some may be sick longer and some may never recover to perfection(run 10 miles) some healing has to be possible for nearly everyone. Probably if determined almost everyone. My psychiatrist use to call me the most doom and gloom individual he had ever met and I can say that. That must mean something 😛
Peter2
9 years ago
Hello, everyone.
Ive been on levofloxacin combined with metronidazole 10 days. 2 days after i stopped them i started having itching on my hands and elbows and i have some red zones there. Also some red zones started showing on other parts of my body but just the hands are itchy(and the scalp aswell). I went to the doctor and she told me to start taking prednisolon F(steroid – dexametason) combined with xyzal. However i see that taking steroids after levofloxacin can lead to really bad stuff. I asked about this but she told me i have urticaria and alergic reaction and i should start taking these meds.
What is your advice? The itching is really annoying right now… im kinda worried about my situation right now.
Linda Livingston
9 years ago
I am sure that anyone who was floxed by Cipro would be loathe to think they had further lined the pockets of Bayer. Well, I was surprised to see the Bayer logo at the bottom of a Coppetone Ad, so I did a little research. It did NOT surprise me to find they also make insecticides, herbacides, adhesives, polyurethane, seed treatments and more. I , and found these labels are all now part of the Bayer Group: Claritin, Coppertone, Afrin, Dr. Scholls, Alka Seltzer, Flintstone Vitamins, Campho-phenique, Aleve (hopefully NO ONE is taking that or any other NSAID), Midol, Bain de Soleil, 1 a day, and of course Bayer aspirin. So let’s start a boycott! (I am sure the Johnson and Johnson list is even more extensive.)
SM
9 years ago
Sometimes I have these moments when I think things could go my way. And other times I am rudely reminded that the pain is still here and still very real. My 2 year flox-a-versary just passed. In those beginning months I had no idea this is what I would be dealing with 24 months later. It’s a good thing too. I couldn’t have handled that knowledge in those early months. And even when I educated myself on floxing, I still didn’t foresee this. Not for this long.
I’m convinced the mental and emotional aspects of this are as bad as the physical. And I don’t think I have any mental and emotional symptoms, not directly anyway. For me, as I’m sure for many, the fear that this may never go away or that it will take 4 years or 6 years or whatever, is the most difficult symptom. When my nerve pain flares or I’m on my feet and the pain builds, it isn’t so much the pain but the reminder that I’m still damaged, still not recovered. That’s what hurts the most in some way. If I knew this was temporary it would be so different. Not knowing is the scariest symptom of all. And it’s something that most non-floxies cannot comprehend.
I constantly remind myself that most people come out of this crap and go on to have very normal and pain free daily lives.
F
9 years ago
Hi everyone, new guy. It’s time to say hi and to thank everyone for giving me hope. I have been coming to this site to read and try to figure this out. Thanks to SM, J, Rene, Jason, Linda, Daniel and of course Lisa, sorry if I missed anyone. I have been trying to figure out if I have been floxed or just some poor shmuck who just started having PN symptoms out of the blue. …But not out of the blue. Tinnitis and foot parasthesia started near the end of a long (6 weeks!) course of Cipro for a bacterial, possibly acute, prostatitis? fatigue, night sweats etc. Been 2 1/2 months since I finished the Cipro. Nerve conduction tests normal but Neuro says it could be small fiber Neuropathy. A year ago I was climbing mountains, now it hurts to stand in line at the grocery store..Depression?…yup. Severe! SM, J, reading back to your posts on June 25 and your discussion on some improvements to your and others nerve issues have given me hope. I have been a good student. Started good multivit, b complex, Magnesium, Ubiquinol, Methylcobalamin, Vit E, C, Alpha lipoic acid. Found a Naturopath and started Glutathione IV. SM, “J. Time. I know lots of people whose nerves recovered at 24-36 months. It’s awful but there is hope.” What you say about the anger and fear and hopelessness being worse than the pain. Any news that anyone has recovered from PN is welcome. Our worlds have been thrown into the meat grinder. Anything to keep going.
F
9 years ago
BTW, happy independence day to you Americans from your Canadian brother to the north!
F
9 years ago
Thanks for the welcome everyone..and the advice!
Suzanne
9 years ago
Been on and off this site since being floxed in January. I have made gains in some areas and none in others. I haven’t really told my story but I found that time, clean diet, as little flouride as possible (don’t forget it’s in food too) supplements of b-12 complex, additional b5, l carnitine, IV immunoglobulin monthly treatments and taking Gabapentin have helped me get to where I am today. I only drink bottled water and make my own tea with it. I have lost so much of who I am as a person and what defines me, it is so discouraging at times. I have seen a lot of docs and have had some tell me I don’t know what I’m talking about to doing everything they can to figure out why and how this happened to me. My newest doc is nicknamed Dr. House and I was told if anyone could figure out how to help me, it’s him. I feel blessed. I was bed, couch and house bound for months, now I get out and even attempt to drive (can only tolerate 5-10 min due to nerve issues) I have tested “normal” on all nerve tests including ncv, EMG, skin punch biopsies…no way I’m doing muscle or nerve biopsies…so, I want to let you know there is light at the end of the tunnel. Also, I look to this site for ideas of ways to possibly help me along. I find things that may help one person will not help me BC I have my own medical history. I know I was looking for anyone and anything that could help me when this happened to me, just be careful you get medical advise on what you may take, even supplements. I went from being an athlete to now being happy when I can walk 3/4 mile in less than 20 min. I have had so many different symptoms it is just crazy! The things that have helped me cope is to try and not look back at what you used to be able to do but look to what you can do today and hope for what you can do tomorrow. I had a neighbor die from cancer in February and I remember I am still alive. Not great, not who I used to be, but alive and there are so many other people worse off than I am! I actually saved my brother and mother from taking cipro and levaquin that was prescribed for them to treat a sinus and bladder infection, Crazy!! My purpose? Who knows?? Find joy each day in something you love and try, try so hard to just forget about it for one day as much as possible. It is hard to do BC its in your face constantly but live, laugh and love! I could go on forever and find I tell my story to anyone who will listen and spread the word. keep hope BC that is all I cling to at times. I miss my former self and life, esp my job, playing with my kids and being active. I hate sitting around!! But I am still here to be apart of their lives and just witnessed my dtr graduate hs! So, awaiting more blood work results, probable spinal tap and see where we go from there… Hoping for some answers. Btw, it most definitely affects mitochondria! FDA needs to support that warning!
Have a great day everyone. Hope this all makes sense, it’s pretty late here… Happy 4th
Jason
9 years ago
Good God Folks, I know this is an extreme example of corruption, but it just shows you how DOCTOR’S stand to make huge gains thanks to Big Pharma tie-ins as I’ve pointed out many times.
Quote “Dr. Farid Fata put hundreds of people through hell in order to line his own pockets, and now federal prosecutors are seeking to put the Detroit-area oncologist away for 175 years. Fata has admitted that he misdiagnosed patients — 553 of them, according to prosecutors — and ordered chemotherapy and other unnecessary treatments for patients who didn’t even have cancer, report NBC News, which says some 9,000 needless injections or infusions were allegedly given.”
Be very very careful Folks, God help us no one can be trusted truly.
ursula
9 years ago
Hi all. I ate 2 cups of steamed kale yesterday for the first time in my life because ive heard so many good thing about it. , did not sleep last night, vomiting and diaree the whole night, still weak today and nausious but I think the vomiting stopped, cant eat or drink much, why did this happen, did I overdo it, am I poisoned with something in the kale? Will it get better? Im avoiding doctors the last year and a half, Im 22 months out from mefloquine 1 pill, much better but still very sick but carry on with normal life sort of. Sleep normal hours now 8 to 9, sleep apnee sort of gone on 18 months out, still space out blurred vision on off ,adrinaline still active, tinitis very low now, fatique, depersonalisation, chest pressure, head pressure. I cant take supplements/vitamins/minerals/ herbal stuff. Ive tried many many times. And can someone tell me if they also have this stiff neck sounds like bubble wrap inside my head, its there 20 months now no improvement and still soreness everywhere in body. sorry im Afrikaans and stomach not well. depression better and night mares stopped 16 months out.
Jen
9 years ago
What everyone who has taken this medication should know is that they may well have an underlying Lyme infection. Trust me; the doctors will not put 2 and 2 together here. Go to ILADS (the International Lyme and Associated Diseases Society) website to check out the symptoms. Lyme disease is a bacterium that lives in the guts of ticks and is spread by a tick bite. I had the exact same symptoms that many of you are reporting after taking Ciprofloxacin and other antibiotics without knowing that I had a chronic disseminated (spread) Lyme infection. As a matter of fact, I have had a reaction now to every single class of antibiotics that I have ever taken and fluoroquinolones have been among the worst. I have been able to take the same antibiotics since without any reactions at all. The drug was not the problem, but an underlying chronic infection was.
The antibody test to diagnosis Lyme is not a direct method of testing for the bacteria and is inaccurate. The test looks to see if your immune system is building antibodies and for various reasons chronically infected patients don’t produce antibodies. A report in the British Medical Journal reviewed 6 separate research studies regarding the accuracy of Lyme testing and the ability to identify true positives ranged from 29-68%. The average of all 6 studies was 56%. That means that they missed 88 patients out of 200 with Lyme disease on average.
Lyme disease is a spirochete like Syphilis, the initial infection presents sometimes with a rash (not all people get the bull’s eye rash) and presents with flu like body aches. The cancer sore with syphilis and the skin rash with Lyme heal and it then goes on to secondary and tertiary stages spreading to any organ or system in the body if not treated. It can affect bladder, prostate, all organs, eyes, joints, tendons, skin, nerves, and central nervous system. Over decades I have been bitten by ticks and infected and reinfected in the USA and in Europe. The bacteria bore their way quickly out of the blood stream and into the tissues, like tendons and ligaments, and also sit dormant in places that are less exposed to the immune system. It also has a predilection for nervous tissue and causes central and peripheral nervous system problems. Ringing in ears, tingling of hands and feet and lancing nerve pain in extremities are typical.
The spirochete (corkscrew like) forms are actually atypical and the bacteria when hit with antibiotics ball up into dormant round cysts and embed themselves in biofilm and thus become up to 1000 time more resistant to antibiotics. When treated with various antibiotics the bacteria present then again to the immune system and there is an extremely inflammatory immune response that releases huge oxidative stress to kill bacteria. The problem is that your body’s cells are not able to clear out the hydrogen peroxides and super oxides created by your Neutrophils (white blood cells used to in defense). When the oxidative stress depletes the body’s natural antioxidants like Glutathione and Selenium you get symptoms like what many are describing as Levoquin toxicity. Such reactions for Lyme patients are known as a Herxheimer reaction.
It took me years to figure out what was wrong with me because how poor the testing is and how unsuspecting most MDs are of chronic Lyme infections. I am a microbiologist and have a doctorate in physical therapy. I had to send some tendon tissue biopsies to Europe to get a direct method detection of massive Lyme spirochetes in order to finally get a diagnosis and treatment. I finally did test positive for Lyme with antibody testing, but not without first a month’s worth of antibiotics. Over and over again I read that in chronic cases, antibiotic treatment for Lyme causes the same Levaquin like adverse reactions. I am finding that IV glutathione helps to clear the oxidative stress created by my own immune / inflammatory response to chronic Lyme along with the proper combinations of antibiotics to kill the Lyme that tends to live in biofilm and other dormant persister forms.
Reactions for me ranged from: Over the years took cipro for recurrent urinary tract infections that never cultured positive for bacteria or for chronic sinus infections also never cultured and had: hives, fever, chills, night and day sweats, headaches, muscle aches, tendon injuries, severe stiffness in knees (felt like a vice on both knees), migrating joint pains, leg cramps, feet cramps, hand cramps. Eventually had 5 bouts of meningitis events that showed severe elevation in white blood cells and followed by a severe drop in white blood cells, high fever, spiking high blood pressure followed hours later by severe drops in blood pressure, tachycardia (fast heart beats) to compensate for drops in blood pressure, dizziness, fatigue, exercise intolerance, blood pressure dropping from sit to stand, wired at night and exhausted in the day.
All I can say is that most MDs do not believe in chronic Lyme and are relying on very poor testing for the disease. They look for spiral forms instead of round cysts and biofilm forms. Even Lyme doctors do not fully understand a Herxheimer reaction with antibiotic treatment. However as a microbiologist, who had to drag my infectious disease physician to the diagnosis that stumped other doctors for 5 years, please look into an underlying Lyme diagnosis before blaming the antibiotic for problems. And if you really don’t think you have Lyme just try the IV Glutathione, check your Vitamin D levels, Selenium levels, and Liver enzyme values, thyroid levels and with the help of a good naturopath doctor and you will likely still get symptom relief. Good luck! Jen
ursula
9 years ago
I took 1 mefloquine because my doctor prescribed it to my son and hubby, and I wanted to see how its going to effect my stomach as the doctor told me its the only thing that can happen. what an idiot. i couldnt give it to my son of 14, if it was going to make him nausious because he had to compete in international artlure angling. They never took it thank you Lord, but i was the firewall and didnt know it, cant take on the doc it wasnt precribed to me. never knew about black box or long term damage on meds. I know a family of 4 who suffered 4 and 5+ years after mefloquine, the kids were lucky they were OK after 6 months. By the way to help the young sufferers here, the first months I couldnt watch TV and couldnt take any noice, metallic taste, had severe bad sad racing thoughts, mostly on waking up all in the first 4to 6 months. trees looked like monsters and negatives of faces appeared when i closed my eyes (could have win an oscar with all the faces that appeared. and women with make up looked scary LOL. I cried 4 times per day and lost 10kg first month, had to use ativan 7 months, valoid 4 months and stillnox 5 months and forced myself off, but i couldnt go without it, became suicidal. No anti depressant or anti psychotic was working and thank you Lord I could through it away, all pills the psych tried went to the dustbin except ativan stillnox, the best of all he understood this toxicity syndrome as i gave him all the documents, he told me he thought nothing was going to make a huge difference, if i did not use the ativan, stillnox i dont think i would be here today (and remember i was also a meds free healthy 45 pre this). Today i dont know if the benzo added to my symptoms till this day as it down regulates gaba a receptors by itself. lost 10kg first months, but all back. Funny first 2 months no nausia, very dry mouth, then after a herbal thing, salive went mad and I had to put cloths in my mouth to absorb, had to swollow a lot this made me off my headlines. nausious for months. Brain zaps like little black outs stopped – took a year. coulnt sing, coulnt wissle. Last winter I took echinacea low dose for my cold and after 5 days had a fit or something wanting to collapse and 3 hours of amnesia!! Crazy hey? Used this pre mefloquine with no problem. still feel if i see in a tunnel like vision, on the sides has heat waves and if i close my eyes (space out feeling like living on mars and heat waves), Do anyone have this funny vision feeling? Did it get better? I also have a little wet ears like the ears is trying to clean itself. Many takes 2 to 3 years and some longer like the one lady took 5 years to read a map to not get lost. Keep up the good work, many are inactive readers here. Another thing be careful of is doxycicline – another recovered floxie went back to square 1 after it. Thanks for support may we all heal.
ursula
9 years ago
for the 2 years sufferers, read this one, remember our gaba a is also effected like the benzo guys:
I avoided alcohol for the most part during year one. Not any more. I have less than I used to but I do have a few beers here and there with friends. Tonight was one of those nights. What surprises me is that for all the floxies who talk about alcohol as if it makes their bodies react negatively, my body is the opposite. After 2-3 drinks, I feel so much better. Why? Does the alcohol just numb the pain? Or is it more about vasodilation? My feet are toasty rather than cold and achy. Thoughts? I could just have 2 beers for breakfast every day. Then 2 more at lunch. Then 2 more at dinner. 🙂
This post is “mostly” geared to Women here that are low in Iodine and/or thinking of taking Iodine, as there is some good info on Cysts, estrogen and other stuff like how critical diet is for anyone polycystic which is all too common. It also mentions the importance of tyrosine for Iodine intake, I have not verified that but don’t doubt its validity considering the source.
http://www.curezone.org/forums/fm.asp?i=1952171
This is someone at Curezone quoting Ted from Earth Clinic, Ted is the most knowledgeable person at Earth Clinic.
Note Ted is NOT talking about Iodine in regards to a Floxed person, he is only talking about people with other ailments supplementing with Iodine in general. He also mentions how Chlorine another Halide also competes with Iodine something I forgot to mention in the discussion further up, and everyone’s water has this (He also mentions Bromine is not just in Bread but potentially in any products with white Flour).
My wife’s Naturalpath discussed with her a lot of the same information as she has cyst issues in Breasts and Ovaries so I thought this would be good timely info to share.
I’m pretty much doing the gym on a daily basis now, maybe 5-6 days per week. The workouts are short, maybe 20-25 minutes. I do weights 2 times per week- I want to give my body lots of rest. I do biking intervals the other days. I’m also doing lots of foam rolling (and have been for 2 months). This may all hurt me or help me or not make any difference. But screw it- I’ve been patient for a long time. And I feel almost normal when I’m working out. It’s more than mental too. My feet are calm when I’m working out. Must be the blood flow.
I made quite a few typos….sorry not wearing my glasses and sleepy to boot. Lastly, genetics play a substantial role and therefore we see the details do matter.
Does anyone know if burning pain can also be a sign of nerve regeneration?? I had PN symptoms when I first got floxed, but most of that went away in February of this year. For the last day or two now I’ve had burning / tingling sensation all over. I’d hate to think my PN returned!!! I did read somewhere that burning can be a sign of nerve damage and also nerves healing. I just don’t know. Is anyone else familiar w this??
Rene (or anyone else)- A question on magnesium. I have switched from glycinate to citrate based on your thoughts. I’ve noticed from your past comments that you suggest about 400 mg per day, which is pretty much the RDA.
Based on what I’ve read elsewhere, people should use the bowel tolerance gauge to measure how much to take. I thought citrate would affect my digestive system easily, but I’ve found I can take 700 mg of Natural Calm and still not have my bowels affected (sorry for the detail).
My thinking is that I should take that much if my body isn’t letting me know it’s too much. Thoughts? Thank you!
OK, this has been my month (well June) to contact as many pubic officials and news agencies as I could. I have contacted members of congress, congressional committees, public agencies, even the president. (I was thrilled to get a call from someone regarding my writing to the White House, only to find out she was with a mental health agency and was calling because I had the word “suicide” listed in side effects. Sigh.) I have written ProPublica, NPR, watchdog groups, and more. It is astounding this has been going on for so many decades and yet is still such an enormous secret, as far as doctors and the rest are concerned. And it is really time for the toothless, impotent FDA to go or have a serious makeover. I encourage everyone to write their representatives and anyone else they can think of that might be a more public voice.
Something I should leave here as my symptoms have been acting up today. Due to stress. Sometimes you might think a website like this is over publicizing ‘hope’. Though the reality is if stress/depression can cause a refloxing any level of ‘positive or decisive determination’ is greater than any supplement or treatment for Floxing.
Sure, don’t take Cipro again. Don’t allow someone to poke you in the butt with a syringe of X drug. Though(!) a lot of us may have a non-linear path of healing. Some may be sick longer and some may never recover to perfection(run 10 miles) some healing has to be possible for nearly everyone. Probably if determined almost everyone. My psychiatrist use to call me the most doom and gloom individual he had ever met and I can say that. That must mean something 😛
Hello, everyone.
Ive been on levofloxacin combined with metronidazole 10 days. 2 days after i stopped them i started having itching on my hands and elbows and i have some red zones there. Also some red zones started showing on other parts of my body but just the hands are itchy(and the scalp aswell). I went to the doctor and she told me to start taking prednisolon F(steroid – dexametason) combined with xyzal. However i see that taking steroids after levofloxacin can lead to really bad stuff. I asked about this but she told me i have urticaria and alergic reaction and i should start taking these meds.
What is your advice? The itching is really annoying right now… im kinda worried about my situation right now.
I am sure that anyone who was floxed by Cipro would be loathe to think they had further lined the pockets of Bayer. Well, I was surprised to see the Bayer logo at the bottom of a Coppetone Ad, so I did a little research. It did NOT surprise me to find they also make insecticides, herbacides, adhesives, polyurethane, seed treatments and more. I , and found these labels are all now part of the Bayer Group: Claritin, Coppertone, Afrin, Dr. Scholls, Alka Seltzer, Flintstone Vitamins, Campho-phenique, Aleve (hopefully NO ONE is taking that or any other NSAID), Midol, Bain de Soleil, 1 a day, and of course Bayer aspirin. So let’s start a boycott! (I am sure the Johnson and Johnson list is even more extensive.)
Sometimes I have these moments when I think things could go my way. And other times I am rudely reminded that the pain is still here and still very real. My 2 year flox-a-versary just passed. In those beginning months I had no idea this is what I would be dealing with 24 months later. It’s a good thing too. I couldn’t have handled that knowledge in those early months. And even when I educated myself on floxing, I still didn’t foresee this. Not for this long.
I’m convinced the mental and emotional aspects of this are as bad as the physical. And I don’t think I have any mental and emotional symptoms, not directly anyway. For me, as I’m sure for many, the fear that this may never go away or that it will take 4 years or 6 years or whatever, is the most difficult symptom. When my nerve pain flares or I’m on my feet and the pain builds, it isn’t so much the pain but the reminder that I’m still damaged, still not recovered. That’s what hurts the most in some way. If I knew this was temporary it would be so different. Not knowing is the scariest symptom of all. And it’s something that most non-floxies cannot comprehend.
I constantly remind myself that most people come out of this crap and go on to have very normal and pain free daily lives.
Hi everyone, new guy. It’s time to say hi and to thank everyone for giving me hope. I have been coming to this site to read and try to figure this out. Thanks to SM, J, Rene, Jason, Linda, Daniel and of course Lisa, sorry if I missed anyone. I have been trying to figure out if I have been floxed or just some poor shmuck who just started having PN symptoms out of the blue. …But not out of the blue. Tinnitis and foot parasthesia started near the end of a long (6 weeks!) course of Cipro for a bacterial, possibly acute, prostatitis? fatigue, night sweats etc. Been 2 1/2 months since I finished the Cipro. Nerve conduction tests normal but Neuro says it could be small fiber Neuropathy. A year ago I was climbing mountains, now it hurts to stand in line at the grocery store..Depression?…yup. Severe! SM, J, reading back to your posts on June 25 and your discussion on some improvements to your and others nerve issues have given me hope. I have been a good student. Started good multivit, b complex, Magnesium, Ubiquinol, Methylcobalamin, Vit E, C, Alpha lipoic acid. Found a Naturopath and started Glutathione IV. SM, “J. Time. I know lots of people whose nerves recovered at 24-36 months. It’s awful but there is hope.” What you say about the anger and fear and hopelessness being worse than the pain. Any news that anyone has recovered from PN is welcome. Our worlds have been thrown into the meat grinder. Anything to keep going.
BTW, happy independence day to you Americans from your Canadian brother to the north!
Thanks for the welcome everyone..and the advice!
Been on and off this site since being floxed in January. I have made gains in some areas and none in others. I haven’t really told my story but I found that time, clean diet, as little flouride as possible (don’t forget it’s in food too) supplements of b-12 complex, additional b5, l carnitine, IV immunoglobulin monthly treatments and taking Gabapentin have helped me get to where I am today. I only drink bottled water and make my own tea with it. I have lost so much of who I am as a person and what defines me, it is so discouraging at times. I have seen a lot of docs and have had some tell me I don’t know what I’m talking about to doing everything they can to figure out why and how this happened to me. My newest doc is nicknamed Dr. House and I was told if anyone could figure out how to help me, it’s him. I feel blessed. I was bed, couch and house bound for months, now I get out and even attempt to drive (can only tolerate 5-10 min due to nerve issues) I have tested “normal” on all nerve tests including ncv, EMG, skin punch biopsies…no way I’m doing muscle or nerve biopsies…so, I want to let you know there is light at the end of the tunnel. Also, I look to this site for ideas of ways to possibly help me along. I find things that may help one person will not help me BC I have my own medical history. I know I was looking for anyone and anything that could help me when this happened to me, just be careful you get medical advise on what you may take, even supplements. I went from being an athlete to now being happy when I can walk 3/4 mile in less than 20 min. I have had so many different symptoms it is just crazy! The things that have helped me cope is to try and not look back at what you used to be able to do but look to what you can do today and hope for what you can do tomorrow. I had a neighbor die from cancer in February and I remember I am still alive. Not great, not who I used to be, but alive and there are so many other people worse off than I am! I actually saved my brother and mother from taking cipro and levaquin that was prescribed for them to treat a sinus and bladder infection, Crazy!! My purpose? Who knows?? Find joy each day in something you love and try, try so hard to just forget about it for one day as much as possible. It is hard to do BC its in your face constantly but live, laugh and love! I could go on forever and find I tell my story to anyone who will listen and spread the word. keep hope BC that is all I cling to at times. I miss my former self and life, esp my job, playing with my kids and being active. I hate sitting around!! But I am still here to be apart of their lives and just witnessed my dtr graduate hs! So, awaiting more blood work results, probable spinal tap and see where we go from there… Hoping for some answers. Btw, it most definitely affects mitochondria! FDA needs to support that warning!
Have a great day everyone. Hope this all makes sense, it’s pretty late here… Happy 4th
Good God Folks, I know this is an extreme example of corruption, but it just shows you how DOCTOR’S stand to make huge gains thanks to Big Pharma tie-ins as I’ve pointed out many times.
https://ca.shine.yahoo.com/doc-told-hundreds-of-healthy-people-they-had-cancer-190304865.html
Quote “Dr. Farid Fata put hundreds of people through hell in order to line his own pockets, and now federal prosecutors are seeking to put the Detroit-area oncologist away for 175 years. Fata has admitted that he misdiagnosed patients — 553 of them, according to prosecutors — and ordered chemotherapy and other unnecessary treatments for patients who didn’t even have cancer, report NBC News, which says some 9,000 needless injections or infusions were allegedly given.”
Be very very careful Folks, God help us no one can be trusted truly.
Hi all. I ate 2 cups of steamed kale yesterday for the first time in my life because ive heard so many good thing about it. , did not sleep last night, vomiting and diaree the whole night, still weak today and nausious but I think the vomiting stopped, cant eat or drink much, why did this happen, did I overdo it, am I poisoned with something in the kale? Will it get better? Im avoiding doctors the last year and a half, Im 22 months out from mefloquine 1 pill, much better but still very sick but carry on with normal life sort of. Sleep normal hours now 8 to 9, sleep apnee sort of gone on 18 months out, still space out blurred vision on off ,adrinaline still active, tinitis very low now, fatique, depersonalisation, chest pressure, head pressure. I cant take supplements/vitamins/minerals/ herbal stuff. Ive tried many many times. And can someone tell me if they also have this stiff neck sounds like bubble wrap inside my head, its there 20 months now no improvement and still soreness everywhere in body. sorry im Afrikaans and stomach not well. depression better and night mares stopped 16 months out.
What everyone who has taken this medication should know is that they may well have an underlying Lyme infection. Trust me; the doctors will not put 2 and 2 together here. Go to ILADS (the International Lyme and Associated Diseases Society) website to check out the symptoms. Lyme disease is a bacterium that lives in the guts of ticks and is spread by a tick bite. I had the exact same symptoms that many of you are reporting after taking Ciprofloxacin and other antibiotics without knowing that I had a chronic disseminated (spread) Lyme infection. As a matter of fact, I have had a reaction now to every single class of antibiotics that I have ever taken and fluoroquinolones have been among the worst. I have been able to take the same antibiotics since without any reactions at all. The drug was not the problem, but an underlying chronic infection was.
The antibody test to diagnosis Lyme is not a direct method of testing for the bacteria and is inaccurate. The test looks to see if your immune system is building antibodies and for various reasons chronically infected patients don’t produce antibodies. A report in the British Medical Journal reviewed 6 separate research studies regarding the accuracy of Lyme testing and the ability to identify true positives ranged from 29-68%. The average of all 6 studies was 56%. That means that they missed 88 patients out of 200 with Lyme disease on average.
Lyme disease is a spirochete like Syphilis, the initial infection presents sometimes with a rash (not all people get the bull’s eye rash) and presents with flu like body aches. The cancer sore with syphilis and the skin rash with Lyme heal and it then goes on to secondary and tertiary stages spreading to any organ or system in the body if not treated. It can affect bladder, prostate, all organs, eyes, joints, tendons, skin, nerves, and central nervous system. Over decades I have been bitten by ticks and infected and reinfected in the USA and in Europe. The bacteria bore their way quickly out of the blood stream and into the tissues, like tendons and ligaments, and also sit dormant in places that are less exposed to the immune system. It also has a predilection for nervous tissue and causes central and peripheral nervous system problems. Ringing in ears, tingling of hands and feet and lancing nerve pain in extremities are typical.
The spirochete (corkscrew like) forms are actually atypical and the bacteria when hit with antibiotics ball up into dormant round cysts and embed themselves in biofilm and thus become up to 1000 time more resistant to antibiotics. When treated with various antibiotics the bacteria present then again to the immune system and there is an extremely inflammatory immune response that releases huge oxidative stress to kill bacteria. The problem is that your body’s cells are not able to clear out the hydrogen peroxides and super oxides created by your Neutrophils (white blood cells used to in defense). When the oxidative stress depletes the body’s natural antioxidants like Glutathione and Selenium you get symptoms like what many are describing as Levoquin toxicity. Such reactions for Lyme patients are known as a Herxheimer reaction.
It took me years to figure out what was wrong with me because how poor the testing is and how unsuspecting most MDs are of chronic Lyme infections. I am a microbiologist and have a doctorate in physical therapy. I had to send some tendon tissue biopsies to Europe to get a direct method detection of massive Lyme spirochetes in order to finally get a diagnosis and treatment. I finally did test positive for Lyme with antibody testing, but not without first a month’s worth of antibiotics. Over and over again I read that in chronic cases, antibiotic treatment for Lyme causes the same Levaquin like adverse reactions. I am finding that IV glutathione helps to clear the oxidative stress created by my own immune / inflammatory response to chronic Lyme along with the proper combinations of antibiotics to kill the Lyme that tends to live in biofilm and other dormant persister forms.
Reactions for me ranged from: Over the years took cipro for recurrent urinary tract infections that never cultured positive for bacteria or for chronic sinus infections also never cultured and had: hives, fever, chills, night and day sweats, headaches, muscle aches, tendon injuries, severe stiffness in knees (felt like a vice on both knees), migrating joint pains, leg cramps, feet cramps, hand cramps. Eventually had 5 bouts of meningitis events that showed severe elevation in white blood cells and followed by a severe drop in white blood cells, high fever, spiking high blood pressure followed hours later by severe drops in blood pressure, tachycardia (fast heart beats) to compensate for drops in blood pressure, dizziness, fatigue, exercise intolerance, blood pressure dropping from sit to stand, wired at night and exhausted in the day.
All I can say is that most MDs do not believe in chronic Lyme and are relying on very poor testing for the disease. They look for spiral forms instead of round cysts and biofilm forms. Even Lyme doctors do not fully understand a Herxheimer reaction with antibiotic treatment. However as a microbiologist, who had to drag my infectious disease physician to the diagnosis that stumped other doctors for 5 years, please look into an underlying Lyme diagnosis before blaming the antibiotic for problems. And if you really don’t think you have Lyme just try the IV Glutathione, check your Vitamin D levels, Selenium levels, and Liver enzyme values, thyroid levels and with the help of a good naturopath doctor and you will likely still get symptom relief. Good luck! Jen
I took 1 mefloquine because my doctor prescribed it to my son and hubby, and I wanted to see how its going to effect my stomach as the doctor told me its the only thing that can happen. what an idiot. i couldnt give it to my son of 14, if it was going to make him nausious because he had to compete in international artlure angling. They never took it thank you Lord, but i was the firewall and didnt know it, cant take on the doc it wasnt precribed to me. never knew about black box or long term damage on meds. I know a family of 4 who suffered 4 and 5+ years after mefloquine, the kids were lucky they were OK after 6 months. By the way to help the young sufferers here, the first months I couldnt watch TV and couldnt take any noice, metallic taste, had severe bad sad racing thoughts, mostly on waking up all in the first 4to 6 months. trees looked like monsters and negatives of faces appeared when i closed my eyes (could have win an oscar with all the faces that appeared. and women with make up looked scary LOL. I cried 4 times per day and lost 10kg first month, had to use ativan 7 months, valoid 4 months and stillnox 5 months and forced myself off, but i couldnt go without it, became suicidal. No anti depressant or anti psychotic was working and thank you Lord I could through it away, all pills the psych tried went to the dustbin except ativan stillnox, the best of all he understood this toxicity syndrome as i gave him all the documents, he told me he thought nothing was going to make a huge difference, if i did not use the ativan, stillnox i dont think i would be here today (and remember i was also a meds free healthy 45 pre this). Today i dont know if the benzo added to my symptoms till this day as it down regulates gaba a receptors by itself. lost 10kg first months, but all back. Funny first 2 months no nausia, very dry mouth, then after a herbal thing, salive went mad and I had to put cloths in my mouth to absorb, had to swollow a lot this made me off my headlines. nausious for months. Brain zaps like little black outs stopped – took a year. coulnt sing, coulnt wissle. Last winter I took echinacea low dose for my cold and after 5 days had a fit or something wanting to collapse and 3 hours of amnesia!! Crazy hey? Used this pre mefloquine with no problem. still feel if i see in a tunnel like vision, on the sides has heat waves and if i close my eyes (space out feeling like living on mars and heat waves), Do anyone have this funny vision feeling? Did it get better? I also have a little wet ears like the ears is trying to clean itself. Many takes 2 to 3 years and some longer like the one lady took 5 years to read a map to not get lost. Keep up the good work, many are inactive readers here. Another thing be careful of is doxycicline – another recovered floxie went back to square 1 after it. Thanks for support may we all heal.
for the 2 years sufferers, read this one, remember our gaba a is also effected like the benzo guys:
http://www.benzobuddies.org/forum/index.php?topic=135793.0