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Jenny
10 years ago
Hi everyone I am 5 months out right now from being floxed. Gonna be 24 here soon and I feel like this pain is going to kill me. I feel like I am 80 years old. It always hits me at night and I am very scared. I’m taking magniseum and Epsom salt baths. My primary doctor and gyno are liars and claim I’m the first patient complaining of this tendon pain/nerve pain. Anything to help? Seems like 5 months should be the worst since it peeks at 6 is this true? I don’t want to die young And think I’ll be pregnant soon :,(
July 6, 2014 – I haven’t been replying to anyone for the last few days because I was off on a camping vacation. It was fun. I’ll get back to everyone shortly. xoxoxoxoxo to all of you!
Laura
10 years ago
I feel I may have a bladder infection and I am in a panic as to the proper antibiotic to take. I read on another site that Macrobid is not recommended for people who have had a reaction to quinolones. I was “floxed” 6 mos. ago due to a bladder infection and after the levofloxacin I took Macrobid. It did clear up the infection but I do not know if it made my current symptoms worse. If anyone has any suggestions I would appreciate your advice. Thank you.
Laura
10 years ago
Thank you Lisa. I will try the things you suggested. I am dreading the idea of antibiotics. Hopefully, your suggestions will be of help. Thanks again.
Crystal
10 years ago
New fluoro being developed (http://en.wikipedia.org/wiki/JNJ-Q2) – keep your eye on it, it’s moving into Phase III clinical trials. Once the name has been established, be sure to spread the word (and whatever pretty name they slap on it!)
These free, online mindfulness meditation sessions with Jan Kabat Zinn are the most wonderful thing. Incredibly relaxing — and a great tool for stepping back from the day to day vicissitudes of this most difficult condition. Give it a go: https://www.youtube.com/watch?v=aS5QpPRFdbg
Jill Donovan
10 years ago
I’ve been going to the Carrell Clinic in Dallas for my cipro induced Achilles tendonitus. I got this the day I finished taking cipro, May 28,2014. I had a cast now a boot for a total of 5 weeks so far. I started taking magnesium,qh-pqq and collagen. I’ve been taking tumeric for about 2yrs but increased the dosage by 1 pill because of the cipro tendonitus. I’m happy to report I’m having just a small amount of pain compared to weeks of agonizing pain. Thankyou Lisa and Ruth for your suggestions. My Dr. couldn’t believe how much better I was last week,he was shocked ! If I hadn’t found your site Lisa I would still be in agonizing pain unable to walk! These supplements work ! It’s a shame doctors won’t even tell patients about them!
Lane
10 years ago
Hi Shawn,
You wrote:
“At this point, about 12 months out, I still have nerve issues. They are mostly in my feet (mostly left foot). They tingle a little, they ache at times, and they burn at times, too. They used to be crazy sensitive to sheets and socks but are less so now. Can I ask what peripheral nerve symptoms you had early on and where they stand now? It sounds like you’re about 21 months out now.”
I had the small fiber biopsy (punch test) at 8 months out along with an NCS/EMG at Cleveland Clinic; no large or small fiber neuropathy was found. I even asked for a large fiber biopsy, but Cleveland Clinic refused because they could find no clinical evidence of neuropathy despite my experiencing tremendous nerve pain, cramping, faciculations, paresthesia and burning feet (barely able to walk). At 20 months out I went to Mayo Clinic (this April) and they ran another NCS/EMG and similarly found no neuropathy. They didn’t do a punch test, because they were waiting for blood tests to come back (all were normal). If I was still in USA I might return to ask for one (just because :-), but doubt it would show anything. The only thing abnomal was the autonomic function test, bascially it showed a low degree of POTS and a low degree of diminished sweat response (overall severity at 2 on a scale of 10 with 10 being the worst). The neurologist diagnosed me having CSS (central sensitivity syndrome, aka fibromyalgia, aka ME/CFS, etc., etc.,) which isn’t a diagnosis really.
This is a rabbit I’ve been chasing since the start (before I even knew Cipro was the culprit), and I haven’t been able to quantify any damage that the Cipro may have done, either because I haven’t found the right test, or the test just doesn’t exist, or because there is in fact no damage. I know fluoroquinolones have hurt me badly, but the process by which FQs cause damage is very ellusive to conventional diagnostics and if damage is found, doctors will usually find it “idiopathic” because it doesn’t connect to any known disease process. Although symptoms of FTS mimic symptoms of many diseases, the disease isn’t there. More tests for you will probably not mean much in terms of scoping fluoroquinolone toxicity syndrome, unless you want to rule out known diseases (MS, ALS, etc).
Now, at 23 months I am seeing some relief in terms of neurological/neuromuscular symptoms…less muscle twitching (fasciculations) actually (whereas before they were body-wide, now they seem limited to legs and feet mostly), virtually no paresthesia (whereas before it was in hands, face and feet), less cramping (especially at night), none of the weird hot/cold patches of sensation on skin, less weakness and trembling unless I’ve been overly exerting myself (whereas before my hands would shake when lifting a glass of water). Recovery (for me at least) is very gradual, almost unnoticeable until you realize what you aren’t experiencing anymore. I had a cycle (or “relapse”) for a few days last month, where the symptoms flared up, but it subsided pretty quickly (when they used to last for 2 weeks). Tendon pains have also improved and I’m not waking around like a zombie much anymore. Cracking and popping have also markedly improved recently as well. Most notably is that I’ve started regaining energy (i.e., not going to be at 7:00 PM anymore) which hopefully means that my mitochondria are able to do more than just keep my organs running. Also playing the piano again (which was almost impossible before due to brain fog and fatigue and forgetting where the keys were).
Sorry if this was more than you wanted to know, but I hope it will provide you and others some hope. I also want to emphasize that I’m not over-stating the recovery I’ve mentioned; I was in bad physical and mental shape…recovery is slow, but the human body is in a constant state of auditing and self repair; the keys are time and proper nutrition/nutraceuticals.
Cheers!!
John Doe
10 years ago
Has anyone heard of Malarone (atovaquone + proguanil) causing symptoms in floxies? I took 2 pills for Malaria prophylaxis 1.5 months ago and have been having symptoms since.
I had a severe reaction to 1 pill of Levaquin 5 years ago, with CNS, PNS and GI issues being the worst. I have been mostly recovered for several years, except some lingering head pressure, tinnitus and GI stuff. I never experienced “cycling,” but rather a very slow and gradual improvement in symptoms over time.
I had an episode of dizziness, lightheadedness, agitation, foggy thinking, an increase in head pressure/headache, and other CNS symptoms after 2 pills of Malarone 1.5 months ago, similar to what happened with Levaquin years ago.
In the proceeding weeks, I’ve started getting burning/freezing pains and all kinds of neuromuscular twitches in my legs, as well as deep muscle pains. Still, there are other symptoms that I had with Levaquin years ago that I am not currently having. Any thoughts appreciated.
Brandon
10 years ago
Can’t comment on Malarone, but I think that my problems really started years back with Lariam (which was an anti-malarial quinolone).
Brandon
10 years ago
I am intrigued by a cycle I am noticing, where it seems like the days I have the most tingling and numbness, my tendons are fairly quiet, and the days my tendons are the tightest/ most painful the tingling and numbness are less pronounced. Also a similar patterns with peripheral neruopathy vs CNS deficits (they seem to alternate in intensity). Has anyone else noticed anything like this, or is it just a matter of where I am focusing my attention?
Laura
10 years ago
Lisa, Is it okay to continue to take the D Mannose with an antibiotic? I have read conflicting items on the internet. I am on Macrobid, a very low dose, and so far not any problems. I would like to start taking the D Mannose as a supplement. Is that something you recommend? I am prone to bladder infections. Thank you.
Debs
10 years ago
Hi Laura
I research drugs in depth, & have done so for many years. Although of course everyone is different, & at the end of the day we have to make our own decision on what to take or not, many people have been harmed by MACROBID. IMO PLEASE try & find an alternative antibiotic to MACROBID , this antibiotic is very nasty & is known as the FQs chemical friend. it carries many of the same/ similar potential ADRs including the risk of irreversible permanent peripheral neuropathy.
For more information on the dangers of this antibiotic, please go to Drugs.Com. & read the information for professionals. Also please IMO avoid BACTRIM, This antibiotic has also done a great deal of damage, BOTH of these antibiotics carry seriously toxic profiles. We tend to be able to tolerate penicillins/ Cephlasporins & Doxy is also usually tolerated ( allergies permitting of course ) on the natural side D Mannose seems to be very good for many .
Laura
10 years ago
Hello Everyone, I was at the doctor’s office yesterday and he let me know about a regimen that he follows for neuropathy. He was unable to practice due to pain and he started with these supplements that helped him tremendously. I know many of you are experts in this area but I thought I would post for the new people needing information.
The vitamin company he uses is: Vitamin Starter – http://www.VitaminStarter.com or phone: (844) 380-2323. He said it does make a difference who you order from, as some supplements are not up to standards.
Regimen: Medical MV Tablets 2 pills 2 times a day. A Probiotic-Medical for allergies, ALA Medical 2 times a day and LA 700 Medical twice a day.I just wanted to pass on the information for you in case it helps.
Brandon
10 years ago
Bayer is fighting hand tooth and claw efforts to ban neonicotonoids,which have been linked not only to the slow demise of honeybees, whose role in the food chain is vital, but also now to the demise of bird populations. This is a company which is completely morally bankrupt.
Bayer and the other pharma giants are just as evil as Monsanto. They don’t tend to get the flak that Monsanto gets though. They should be on the chopping block along with Monsanto.
Reaching out to Erin Brokovich sounds good to me! Please feel free to send her any of my stuff. 🙂
Since I live in the State of Michigan this is a law that prevents victims from suing drug companies.
deana
10 years ago
Hi everyone…..I was floxed in Feb. I am doing better other than some occasional nerve/muscle pains. My biggest problem is still the acid reflux….I’ve changed my diet but not eating alot….can’t have endoscopy done until August 26. Has anyone else experienced the horrible reflux? I cannot take Prilosec or Nexium cuz of the side effects I had….they just recently put me on Carafate and Zantac. I seem to do ok but noticed some burning leg pain yesterday. Are the meds ok for me to take? I’ve been having throat pain and mouth irritation before starting the meds. Did anyone have throat/mouth problems or could it just be from the reflux…..or a vitamin deficiency?? I’m fixing to get a tooth capped or possibly pulled also….anything I need to avoid with this??
Hi everyone I am 5 months out right now from being floxed. Gonna be 24 here soon and I feel like this pain is going to kill me. I feel like I am 80 years old. It always hits me at night and I am very scared. I’m taking magniseum and Epsom salt baths. My primary doctor and gyno are liars and claim I’m the first patient complaining of this tendon pain/nerve pain. Anything to help? Seems like 5 months should be the worst since it peeks at 6 is this true? I don’t want to die young And think I’ll be pregnant soon :,(
July 6, 2014 – I haven’t been replying to anyone for the last few days because I was off on a camping vacation. It was fun. I’ll get back to everyone shortly. xoxoxoxoxo to all of you!
I feel I may have a bladder infection and I am in a panic as to the proper antibiotic to take. I read on another site that Macrobid is not recommended for people who have had a reaction to quinolones. I was “floxed” 6 mos. ago due to a bladder infection and after the levofloxacin I took Macrobid. It did clear up the infection but I do not know if it made my current symptoms worse. If anyone has any suggestions I would appreciate your advice. Thank you.
Thank you Lisa. I will try the things you suggested. I am dreading the idea of antibiotics. Hopefully, your suggestions will be of help. Thanks again.
New fluoro being developed (http://en.wikipedia.org/wiki/JNJ-Q2) – keep your eye on it, it’s moving into Phase III clinical trials. Once the name has been established, be sure to spread the word (and whatever pretty name they slap on it!)
http://www.furiex.com/pipeline/discoverydevelopment-pipeline/fluoroquinolone/
These free, online mindfulness meditation sessions with Jan Kabat Zinn are the most wonderful thing. Incredibly relaxing — and a great tool for stepping back from the day to day vicissitudes of this most difficult condition. Give it a go: https://www.youtube.com/watch?v=aS5QpPRFdbg
I’ve been going to the Carrell Clinic in Dallas for my cipro induced Achilles tendonitus. I got this the day I finished taking cipro, May 28,2014. I had a cast now a boot for a total of 5 weeks so far. I started taking magnesium,qh-pqq and collagen. I’ve been taking tumeric for about 2yrs but increased the dosage by 1 pill because of the cipro tendonitus. I’m happy to report I’m having just a small amount of pain compared to weeks of agonizing pain. Thankyou Lisa and Ruth for your suggestions. My Dr. couldn’t believe how much better I was last week,he was shocked ! If I hadn’t found your site Lisa I would still be in agonizing pain unable to walk! These supplements work ! It’s a shame doctors won’t even tell patients about them!
Hi Shawn,
You wrote:
“At this point, about 12 months out, I still have nerve issues. They are mostly in my feet (mostly left foot). They tingle a little, they ache at times, and they burn at times, too. They used to be crazy sensitive to sheets and socks but are less so now. Can I ask what peripheral nerve symptoms you had early on and where they stand now? It sounds like you’re about 21 months out now.”
I had the small fiber biopsy (punch test) at 8 months out along with an NCS/EMG at Cleveland Clinic; no large or small fiber neuropathy was found. I even asked for a large fiber biopsy, but Cleveland Clinic refused because they could find no clinical evidence of neuropathy despite my experiencing tremendous nerve pain, cramping, faciculations, paresthesia and burning feet (barely able to walk). At 20 months out I went to Mayo Clinic (this April) and they ran another NCS/EMG and similarly found no neuropathy. They didn’t do a punch test, because they were waiting for blood tests to come back (all were normal). If I was still in USA I might return to ask for one (just because :-), but doubt it would show anything. The only thing abnomal was the autonomic function test, bascially it showed a low degree of POTS and a low degree of diminished sweat response (overall severity at 2 on a scale of 10 with 10 being the worst). The neurologist diagnosed me having CSS (central sensitivity syndrome, aka fibromyalgia, aka ME/CFS, etc., etc.,) which isn’t a diagnosis really.
This is a rabbit I’ve been chasing since the start (before I even knew Cipro was the culprit), and I haven’t been able to quantify any damage that the Cipro may have done, either because I haven’t found the right test, or the test just doesn’t exist, or because there is in fact no damage. I know fluoroquinolones have hurt me badly, but the process by which FQs cause damage is very ellusive to conventional diagnostics and if damage is found, doctors will usually find it “idiopathic” because it doesn’t connect to any known disease process. Although symptoms of FTS mimic symptoms of many diseases, the disease isn’t there. More tests for you will probably not mean much in terms of scoping fluoroquinolone toxicity syndrome, unless you want to rule out known diseases (MS, ALS, etc).
Now, at 23 months I am seeing some relief in terms of neurological/neuromuscular symptoms…less muscle twitching (fasciculations) actually (whereas before they were body-wide, now they seem limited to legs and feet mostly), virtually no paresthesia (whereas before it was in hands, face and feet), less cramping (especially at night), none of the weird hot/cold patches of sensation on skin, less weakness and trembling unless I’ve been overly exerting myself (whereas before my hands would shake when lifting a glass of water). Recovery (for me at least) is very gradual, almost unnoticeable until you realize what you aren’t experiencing anymore. I had a cycle (or “relapse”) for a few days last month, where the symptoms flared up, but it subsided pretty quickly (when they used to last for 2 weeks). Tendon pains have also improved and I’m not waking around like a zombie much anymore. Cracking and popping have also markedly improved recently as well. Most notably is that I’ve started regaining energy (i.e., not going to be at 7:00 PM anymore) which hopefully means that my mitochondria are able to do more than just keep my organs running. Also playing the piano again (which was almost impossible before due to brain fog and fatigue and forgetting where the keys were).
Sorry if this was more than you wanted to know, but I hope it will provide you and others some hope. I also want to emphasize that I’m not over-stating the recovery I’ve mentioned; I was in bad physical and mental shape…recovery is slow, but the human body is in a constant state of auditing and self repair; the keys are time and proper nutrition/nutraceuticals.
Cheers!!
Has anyone heard of Malarone (atovaquone + proguanil) causing symptoms in floxies? I took 2 pills for Malaria prophylaxis 1.5 months ago and have been having symptoms since.
I had a severe reaction to 1 pill of Levaquin 5 years ago, with CNS, PNS and GI issues being the worst. I have been mostly recovered for several years, except some lingering head pressure, tinnitus and GI stuff. I never experienced “cycling,” but rather a very slow and gradual improvement in symptoms over time.
I had an episode of dizziness, lightheadedness, agitation, foggy thinking, an increase in head pressure/headache, and other CNS symptoms after 2 pills of Malarone 1.5 months ago, similar to what happened with Levaquin years ago.
In the proceeding weeks, I’ve started getting burning/freezing pains and all kinds of neuromuscular twitches in my legs, as well as deep muscle pains. Still, there are other symptoms that I had with Levaquin years ago that I am not currently having. Any thoughts appreciated.
Can’t comment on Malarone, but I think that my problems really started years back with Lariam (which was an anti-malarial quinolone).
I am intrigued by a cycle I am noticing, where it seems like the days I have the most tingling and numbness, my tendons are fairly quiet, and the days my tendons are the tightest/ most painful the tingling and numbness are less pronounced. Also a similar patterns with peripheral neruopathy vs CNS deficits (they seem to alternate in intensity). Has anyone else noticed anything like this, or is it just a matter of where I am focusing my attention?
Lisa, Is it okay to continue to take the D Mannose with an antibiotic? I have read conflicting items on the internet. I am on Macrobid, a very low dose, and so far not any problems. I would like to start taking the D Mannose as a supplement. Is that something you recommend? I am prone to bladder infections. Thank you.
Hi Laura
I research drugs in depth, & have done so for many years. Although of course everyone is different, & at the end of the day we have to make our own decision on what to take or not, many people have been harmed by MACROBID. IMO PLEASE try & find an alternative antibiotic to MACROBID , this antibiotic is very nasty & is known as the FQs chemical friend. it carries many of the same/ similar potential ADRs including the risk of irreversible permanent peripheral neuropathy.
For more information on the dangers of this antibiotic, please go to Drugs.Com. & read the information for professionals. Also please IMO avoid BACTRIM, This antibiotic has also done a great deal of damage, BOTH of these antibiotics carry seriously toxic profiles. We tend to be able to tolerate penicillins/ Cephlasporins & Doxy is also usually tolerated ( allergies permitting of course ) on the natural side D Mannose seems to be very good for many .
Hello Everyone, I was at the doctor’s office yesterday and he let me know about a regimen that he follows for neuropathy. He was unable to practice due to pain and he started with these supplements that helped him tremendously. I know many of you are experts in this area but I thought I would post for the new people needing information.
The vitamin company he uses is: Vitamin Starter – http://www.VitaminStarter.com or phone: (844) 380-2323. He said it does make a difference who you order from, as some supplements are not up to standards.
Regimen: Medical MV Tablets 2 pills 2 times a day. A Probiotic-Medical for allergies, ALA Medical 2 times a day and LA 700 Medical twice a day.I just wanted to pass on the information for you in case it helps.
Bayer is fighting hand tooth and claw efforts to ban neonicotonoids,which have been linked not only to the slow demise of honeybees, whose role in the food chain is vital, but also now to the demise of bird populations. This is a company which is completely morally bankrupt.
http://www.theguardian.com/environment/2014/jul/09/neonicotinoids-farmland-birds
More Bayer evil:
http://www.newser.com/story/188916/erin-brockovichs-new-target-bayer-birth-control.html
Bayer and the other pharma giants are just as evil as Monsanto. They don’t tend to get the flak that Monsanto gets though. They should be on the chopping block along with Monsanto.
Reaching out to Erin Brokovich sounds good to me! Please feel free to send her any of my stuff. 🙂
Hello everyone,
Check this story out
http://www.insurancejournal.com/news/midwest/2007/12/17/85714.htm
Since I live in the State of Michigan this is a law that prevents victims from suing drug companies.
Hi everyone…..I was floxed in Feb. I am doing better other than some occasional nerve/muscle pains. My biggest problem is still the acid reflux….I’ve changed my diet but not eating alot….can’t have endoscopy done until August 26. Has anyone else experienced the horrible reflux? I cannot take Prilosec or Nexium cuz of the side effects I had….they just recently put me on Carafate and Zantac. I seem to do ok but noticed some burning leg pain yesterday. Are the meds ok for me to take? I’ve been having throat pain and mouth irritation before starting the meds. Did anyone have throat/mouth problems or could it just be from the reflux…..or a vitamin deficiency?? I’m fixing to get a tooth capped or possibly pulled also….anything I need to avoid with this??