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Old 11-25-2012, 09:51 AM #271
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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 12-09-2012, 03:24 PM #272
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Originally Posted by LizaJane View Post
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.
And how long does it take for the nutrient approach to help.....months? as it hasn't helped me yet.
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Old 01-17-2013, 04:55 AM #273
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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 #274
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Quote:
Originally Posted by Jesse M View Post
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 #275
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Originally Posted by Nervous View Post
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 #276
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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 01-19-2013, 09:47 AM #277
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Quote:
Originally Posted by Nervous View Post
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!
Mark56
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Old 01-23-2013, 02:02 PM #278
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Default Finally got better

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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Old 01-24-2013, 01:25 PM #279
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I'm not sure what your circumstance was to begin with or how you actually got PN, but I'm very glad you are feeling better now.

I was thinking of adding Alpha Lipoic Acid to my vitamin regiment but don't know the concerns or dangers of it just yet. I have to research a whole lot before I try something out. But I heard that Alpha Lipoic Acid was one of the best antioxidants that really helps to not only relieve PN pains, but actually heals it by catering and feeding the mitochondrial damage of nerves and such.

Does anyone here take Alpha Lipoic Acid for neuropathy? And if so, please let me know what it has done for you, as well if there are any side effects from it.
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Old 01-24-2013, 02:20 PM #280
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I am so glad you are doing better, Grandma123.

Jesse, I have taken Alpha Lipoic Acid for about 3 1/2 years.

I take that, Benfotiamine, b12, D, L carnitine (Carniclear,) Pregnenalone, GLA, Fish oil, magnesium citrate powder, vit C, Ground flaxseed, whey protein in my really heathful smoothies, NAC, Vit E, Glutatione (Liposomal) Green powder, and a lot of other great things. I also eat the best foods with no processed sugar or carbs. to heal the nerves, mitochondria, energy, hormone support, antioxidents and immune system.

My CFS and Dysautonomia (autonomic neuropathy) are so much better.

For me, it is not how one or two things work, it all works together for healing.
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