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Old 10-26-2012, 01:26 PM #1
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Originally Posted by Rosie33 View Post
I'm so glad that you're feeling better but I'm not understanding what you mean by being "floxed" by Cipro. Were you taking it to help your PIN or did you stop taking it? If you would be so kind to explain.
I was prescribed Cipro for a minor prostate infection and ended up getting poisoned by it "floxed" as so many others term it. Cipro and Levaquin and other Floroquinolone anti-biotic drugs cause Peripheral Neuropathy as a side effect. (as well as other well-known drugs) This is known as Toxic Neuropathy Secondary to Medication according to the Center for Peripheral Neuropathy in Chicago as well as others.

Basically, it's generally said that most PN caused by drugs does go away in time, but in really "EXTREME" cases it MIGHT be permanent.

Of course, the big question is what is determined "Extreme" as most people suffering from PN will certainly feel they are extreme cases due to the pain they get. But there doesn't seem to be an answer for that. Below is my personal blog-case and how I ended up with PN, though I don't know if I'm an extreme case (I certainly hope not - that would lean towards a permanent damage, and frankly, I don't feel like that now-a-days)

I have Peripheral Neuropathy from a prescribed, 21-day treatment of Ciprofloxacin (500 MG twice a day) back in June 2012 for a case of prostatis. After 3 weeks, I first noticed the pain and then I quickly stopped taking it after noticing very severe pains. Now, 3 months later in October, I still have frequent pains though they are far less painful.

At the time, I was taking Cipro I was also taking the NSAID Naproxen (1 pill per day and my 1 MG of Clonazapam twice a day). I have discovered afterward that taking NSAIDS and benzos such as Clonazapam/Klonapin while taking Cipro augments Cipro Toxicity. I have had many tests done – I do NOT have diabetes or MS. So this suggest further that my Neuropathy is from taking Cipro.

I had regularly drunk less/or about one 6 -pack of beer on the weekend – so alcoholism seems a very unlikely cause. Now, in October of this year, I still suffer from daily pains of needle and pinpricks and cramps, especially in my feet, toes, and fingers. What has changed is that I no longer feel the hardcore stabbing pains in my toes or the prolonged cramps.

I even have days where I feel “Almost Normal”. Basically I’m afraid of what most Cipro poisoned people are of – that this pain will last for the rest of our lives. Still, I feel much better then I did 3 months ago, especially after taking the four vitamins I’ve been taking daily since august. (Vitamin C 120 mg, Omega 3 120 mg, Magnesium 250 mg and B-12 500 mcg).

The thing is, my urologist did NOT tell me the dangers of the drug, and even told me to take it with NSAIDS and my Clonazepam! I'm was also told to take it for another three weeks, which luckily I did NOT!!! 2 ER doctors told me the PN was most likely from Cipro which is very rare for doctors to admit. 1 doctor told me to stop taking Cipro immediately and the side effects will fade away in time. Which seems true, at least to a certain extent. --Of course the time to heal probably varies from person to person.

I asked why they thought this and they said: "You have no history of any ailment that would give you PN - it would be astronomical, a million to one, that you'd get PN by any other means at exactly the same time you've been taking a drug well-known to cause it."

Basically they said all they could without getting into trouble that Cipro caused my PN -still, my neurologist doesn't believe it, despite all the tests that I took that eliminate other causes.

I told my neurologist that I still have frequent pains daily, especially in my hands and feet (fingers & toes mainly) and truthfully they are fading away, just very slowly, as they are clearly not as severe as before.

She simply told me -" if they are fading away -then you don't have anything to worry about then."
As condescending as she sounds, I hope it's true.

Last edited by Jesse M; 10-26-2012 at 10:57 PM. Reason: Quoting from a site that has COPYRIGHT
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Old 11-25-2012, 09:35 AM #2
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Originally Posted by Jesse M View Post
I was prescribed Cipro for a minor prostate infection and ended up getting poisoned by it "floxed" as so many others term it. Cipro and Levaquin and other Floroquinolone anti-biotic drugs cause Peripheral Neuropathy as a side effect. (as well as other well-known drugs) This is known as Toxic Neuropathy Secondary to Medication according to the Center for Peripheral Neuropathy in Chicago as well as others.

Basically, it's generally said that most PN caused by drugs does go away in time, but in really "EXTREME" cases it MIGHT be permanent.

Of course, the big question is what is determined "Extreme" as most people suffering from PN will certainly feel they are extreme cases due to the pain they get. But there doesn't seem to be an answer for that. Below is my personal blog-case and how I ended up with PN, though I don't know if I'm an extreme case (I certainly hope not - that would lean towards a permanent damage, and frankly, I don't feel like that now-a-days)

I have Peripheral Neuropathy from a prescribed, 21-day treatment of Ciprofloxacin (500 MG twice a day) back in June 2012 for a case of prostatis. After 3 weeks, I first noticed the pain and then I quickly stopped taking it after noticing very severe pains. Now, 3 months later in October, I still have frequent pains though they are far less painful.

At the time, I was taking Cipro I was also taking the NSAID Naproxen (1 pill per day and my 1 MG of Clonazapam twice a day). I have discovered afterward that taking NSAIDS and benzos such as Clonazapam/Klonapin while taking Cipro augments Cipro Toxicity. I have had many tests done – I do NOT have diabetes or MS. So this suggest further that my Neuropathy is from taking Cipro.

I had regularly drunk less/or about one 6 -pack of beer on the weekend – so alcoholism seems a very unlikely cause. Now, in October of this year, I still suffer from daily pains of needle and pinpricks and cramps, especially in my feet, toes, and fingers. What has changed is that I no longer feel the hardcore stabbing pains in my toes or the prolonged cramps.

I even have days where I feel “Almost Normal”. Basically I’m afraid of what most Cipro poisoned people are of – that this pain will last for the rest of our lives. Still, I feel much better then I did 3 months ago, especially after taking the four vitamins I’ve been taking daily since august. (Vitamin C 120 mg, Omega 3 120 mg, Magnesium 250 mg and B-12 500 mcg).

The thing is, my urologist did NOT tell me the dangers of the drug, and even told me to take it with NSAIDS and my Clonazepam! I'm was also told to take it for another three weeks, which luckily I did NOT!!! 2 ER doctors told me the PN was most likely from Cipro which is very rare for doctors to admit. 1 doctor told me to stop taking Cipro immediately and the side effects will fade away in time. Which seems true, at least to a certain extent. --Of course the time to heal probably varies from person to person.

I asked why they thought this and they said: "You have no history of any ailment that would give you PN - it would be astronomical, a million to one, that you'd get PN by any other means at exactly the same time you've been taking a drug well-known to cause it."

Basically they said all they could without getting into trouble that Cipro caused my PN -still, my neurologist doesn't believe it, despite all the tests that I took that eliminate other causes.

I told my neurologist that I still have frequent pains daily, especially in my hands and feet (fingers & toes mainly) and truthfully they are fading away, just very slowly, as they are clearly not as severe as before.

She simply told me -" if they are fading away -then you don't have anything to worry about then."
As condescending as she sounds, I hope it's true.
Hi Jesse M.
I consider myself with severe neuropathy, hands and especially feet and lower legs.
For the past 10 years or so, I've had to take Cipro for problems related to diverticulitus. At least 3 times, maybe 4.
Can you give me more information on the Cipro "Floxed" condition?
Thanks!
Mike
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Old 11-25-2012, 09:51 AM #3
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Originally Posted by MikeB View Post
Hi Jesse M.
I consider myself with severe neuropathy, hands and especially feet and lower legs.
For the past 10 years or so, I've had to take Cipro for problems related to diverticulitus. At least 3 times, maybe 4.
Can you give me more information on the Cipro "Floxed" condition?
Thanks!
Mike
Until Jesse answers, here is my post on fluoroquinolones:
http://neurotalk.psychcentral.com/post661103-2.html
There are many links on that post, you might want to explore.
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Old 01-17-2013, 04:55 AM #4
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Default Cipro PN Can Heal

Quote:
Originally Posted by MikeB View Post
Hi Jesse M.
I consider myself with severe neuropathy, hands and especially feet and lower legs.
For the past 10 years or so, I've had to take Cipro for problems related to diverticulitus. At least 3 times, maybe 4.
Can you give me more information on the Cipro "Floxed" condition?
Thanks!
Mike
To Mike B:

This is a long post, but I hope it helps – I don’t see many others with Cipro PN here. Nearly 3 years ago I had divertculitis and had to take Flagly for that infection. I was told outright not to take any NSAIDS, as they are bad for the stomach. Flagly can often cause PN, too – but I had not taken the full prescription nor did I mix it with any other drugs, so it did not cause my PN.

My PN was indeed, caused by Cipro, which I took about a year or so later. I have since collected a lot of information about Cipro induced Neuropathy, many from actual doctors, who are now well aware that Cipro can cause PN.

It’s the 3rd week of January 2013 and I still have PN (nearly 7 months now). However, the improvements compared to the pains I once had are truly wonderful. Meaning that I have healed about 70 percent in about 7 months. Now, this does not mean I’m not suffering, as I do have painful flare-ups, mostly only lasting for about 7 days or less and this about once a month. But each flare-up has been less painful over the last few months.

Despite being so lucky, I still have serious distress over PN pain issues. I still have mild to light PN pains in my feet, toes, hands and fingers as well as other parts of my body from time to time every day, but most of these are very light. The major pains have all gone. Meaning, I no longer suffer from stabbing pains or severe pains in my body at all.

What’s very different about me and some other people in this forum, is that I believe that many people with PN have, can, and will heal completely from PN. But there is some interpretation as to what you consider “completely” healed. With Cipro caused PN, there have been cases where people have indeed completely healed, some faster than others.

This has to do much about the circumstances and the biology of the person when taking the drug. For example, I’m positive that taking NSAIDS and Clonazapam/Klonapin while taking Cipro greatly increased my chances of getting PN from it. Also every person’s body is different.

Some people have taken 6 weeks worth of Cipro with no reactions, while others got only temporary PN before it faded away. This has to do with how much damage was done to your nerves, as well as how quickly you stopped taking the drug. In turn, healing heavily depends on how well you treat yourself.

I was always a very anxious person and when I got PN I was absolutely devastated. In fact I was truly suicidal. But I did certain things that gave me an advantage despite being in a very bad situation. The first was I stopped taking Cipro when I started feeling the pains – this was still late – 3 -weeks to be exact. (I never took the other 3-week prescription I was ordered) I then started on certain vitamins very quickly, mainly B12 and Vitamin C. Later I got information from this forum and added more vitamins to my regiment, carefully picking out what I felt was best for my personal situation.

What’s also not addressed much is that Cipro has other neurological effects to the brain including anxiety and depression. But honestly there is very positive news about PN induced Cipro, that being it can heal – leastwise it can heal to the point where your pains are reduced to very light ones, even barely notable at times and in this case, although not completely healed, you can live and enjoy life just as much as if you were. I have personally reached that level over the last 2 months, being stable most of the time, only interrupted by flare-up pains every 3 weeks or so. In some cases, people have been completely healed mainly from the fact that their nerves were not damaged too badly to begin with.

Currently, I just had a flare-up that lasted about a full week - lots of pins and needles stings and mild cramping in my hands and fingers and toes. Still, it was nowhere near the pain intensity that I had a couple of months ago. Still, after feeling nearly normal for weeks, getting a relapse of pain can be very scary and very depressing, which in of itself can worsen PN pain. I notice that rainy days that last for over 2 days will often start a week long flare up for me.

Also staying away from beer/alcohol has been a bit of a problem for me during this time. Though never a heavy drinker, I currently drink about 4 to 5 lite beers on a weekend socially. And now never more than a six pack even on celebrations. Oddly this doesn’t seem to affect me much, maybe because I drink at such a slow pace, or I skip a week here and there. But I do NOT recommend this either. When I drink, it’s to relax some and let loose, never to indulge or get drunk. Still, I have to curb this as well.

Cipro is a medication that should NEVER be taken. It is too powerful and affects the body and brain in ways that are still not understood till this day. If you are taking it, I suggest dropping it immediately. All (not some) ALL fluoroquinolone drugs should not be sold period! They are too experimental, even the top pharmaceutical experts agree on this.

Recently I dropped to 0.5 Clonazepam/Klonapin per day. This for anxiety only (I was taking this drug for a year before getting PN). According to my neurologists, it does not cause PN but it does not mask pain or control it either, it does calm the anxiety caused by pain. I do NOT suggest this - as I am no doubt addicted to this drug even at this low dosage. I take no drugs for pain, no aspirin or over the counter drugs either, even in a flare up. What I do take are vitamins. Here is my current list to which I feel has helped me heal quite a lot, thank God.

I’m currently taking these vitamins: B12 500mcg, Omega 3 120mg, Lycopene (for prostate health) Slow-mag magnesium, regular B1-thiamin 300mg per day (half in the morning-half at night) Vitamin C 100 and sometimes 200mg per day.

I’m currently considering trying out other supplements such as the Methylcolbamin B12 and Benfotiamine B1, but still can’t find them at my local stores. (Though I heard they may now be carried at Wal-Mart). And perhaps some mitochondrial aids, like acetyl carnitine, CoQ-10 and r-lipoic acid. Though I will have to do major research on these.

Lastly, I suggest taking the positive information from forums you read and most definitely stay away from negative ones! Negative posts about endless permanent suffering are only going to make you feel worst and scare the crap out of you. Plus most of the times they are not true, you can heal from PN, if not completely, then certainly to a point where you can live with it, often happily so. Here are some positive articles I found from real medical experts concerning Cipro and drug induced neuropathy. I hope this helps. God Bless.

http://peripheralneuropathycenter.uc...ic/drugs.shtml


http://www.aan.com/elibrary/neurolog...01107020-00016
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Old 01-17-2013, 11:16 AM #5
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Lastly, I suggest taking the positive information from forums you read and most definitely stay away from negative ones! Negative posts about endless permanent suffering are only going to make you feel worst and scare the crap out of you. Plus most of the times they are not true, you can heal from PN, if not completely, then certainly to a point where you can live with it, often happily so. Here are some positive articles I found from real medical experts concerning Cipro and drug induced neuropathy. I hope this helps. God Bless.



Thank you for your thoughtful post.

I quoted the above because it is a good reminder. My PN has not been "cured" over the time that I have been taking supplements, but it is quite a bit better in many regards, and, considering that my doctors wrote me off as hopeless and incurable-untreatable, I know that I am making meaningful progress.
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Old 01-17-2013, 02:00 PM #6
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Thank you for your thoughtful post.

I quoted the above because it is a good reminder. My PN has not been "cured" over the time that I have been taking supplements, but it is quite a bit better in many regards, and, considering that my doctors wrote me off as hopeless and incurable-untreatable, I know that I am making meaningful progress.
I know exactly what you mean. I have discovered that PN is a disease of horrible symptoms that works on two fronts - one is the actual pain of it -and the second is the depression and anxiety that comes along with it. If we could honestly separate the depression and anxiety it causes, it would be a lot easier to deal with.

It's my understanding in all honesty from those who have PN, as well as doctors that are experts in the field, that PN DOES improve - MANY times to the point were it is truly healed or fades to the point where it doesn't affect your quality of life much. If it wasn't for the flare-ups I have every month - I would already be at that level. ...Either one would be fine with me.

But echoing your point here: even if PN is permanent for some it does NOT mean that your level of suffering is. By far, most people WILL get better and it's best to remember this.

I also pasted a "Positive" link below to a guy who had a very similar situation to mine, but he took the drug 3 weeks longer than I did. It's the response from the doctor at the bottom that's very interesting here, as he explains that PN nerve damage CAN indeed heal. ...Happy healing & God Bless.

http://www.justanswer.com/neurology/...cin-500mg.html
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Old 01-17-2013, 03:02 PM #7
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I have PN caused by two ankle surgeries. Yes it did improve with the vitamines that were mentioned in these posts. I didn't think it would get better, and was very skeptical of improvement. B12 shots, CoQ10, Bcomplex, all are helping. I am amazed. I wish all of you the best. ginnie
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Old 01-26-2013, 08:32 AM #8
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I have PN caused by two ankle surgeries. Yes it did improve with the vitamines that were mentioned in these posts. I didn't think it would get better, and was very skeptical of improvement. B12 shots, CoQ10, Bcomplex, all are helping. I am amazed. I wish all of you the best. ginnie
Caution on the B Complex as it will usually contain B6. I had been taking B6 as well as B12 and a blood test showed an elevated B6. My neurologist said high levels of B6 can worsen PN.
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Old 01-19-2013, 09:47 AM #9
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Thank you for your thoughtful post.

I quoted the above because it is a good reminder. My PN has not been "cured" over the time that I have been taking supplements, but it is quite a bit better in many regards, and, considering that my doctors wrote me off as hopeless and incurable-untreatable, I know that I am making meaningful progress.
No patient should endure the feeling of being written off by their caregivers.
Thrilled for you strides in the direction of better life are yours ANYWAY!
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Old 01-23-2013, 02:02 PM #10
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I haven't been on here for a long time. I got very sick last spring with a whole host of seemingly unrelated symptoms. I was nauseated, I had numbness and tingling in my hands & feet, I had head pain, hand tremors, palpitations and tinnitus.

I had been to two physiatrists, my family doctor, a chiropractor and several PT's. I had a brain scan, MRI of neck and back, nerve conduction tests, blood work and was eventually referred to a rheumatologist. Everything came back normal - except all the long standing problems I knew I had with my back.

Two trips to the ER showed that I had low potassium. That was addressed with potassium IV and supplements. The heart palpitations went away. Another trip for the tremors showed that my TSH was very low (my T3 and T4 were normal). Apparently the tsh had been dropping for about 2 years. I've been on synthroid for over 30 years.

I had high anxiety about all my symptoms and was told to see a therapist and take an antidepressant. Neither worked and I stopped both.

It was after I saw my endocrinologist and got the right dosage of synthroid that my symptoms went away. As I got healthier my anxiety lessened. Now, several months on my proper dose and the numbness and tingling are gone.
These are not typical symptoms of low tsh but I had them.

It was a catch 22. I didn't feel well, the anxiety went up, and that definitely adds to the symptoms. Even now, it will increase my tinniutus.

So, no supplements. Nothing more than adjusting my synthroid dosage. Now my back problems - which are a train wreck - are another problem. But I will say that PT has never helped. I exercise. And try to eat right. I think that helps.

So, numbness and tingling can often have an obscure reason.
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