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Old 11-30-2012, 12:03 PM   #1
Jesse M
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Default Health Advice for Peripheral Neuropathy & Drug Induced/ Toxic Neuropathy

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What are they chances of healing from toxic neuropathy or neuropathy caused by medicines and drugs such as Fluoroquinolones, like Ciprofloxacin and Flagly?

I posted this thread for any advice to those suffering from PN (Peripheral Neuropathy) caused by drugs and medications. However, ANY advice about dealing with PN and living a healthier life with PN, and more importantly, healing from it, are very welcomed here.

I'm starting this off by posting what I do know about taking any Fluoroquinolones antibiotics: first off they should NEVER be taken with NSAIDS (that means NO Aspirin, Aleive, or Naproxen) or should NOT be taken if you are taking any Benzodiazapines , such as Clonazepam/Klonopin, Xanax, or like-minded anti-anxiety medications.

(Below: my personal history with Neuropathy caused by Cipro)

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, 5 months later – the last days of November, 2012, I still have some 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 November of this year, I still suffer from daily pains of burning, 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. In fact, 5 months into it, I am feeling much better with only very light cramps and needles stings-like pains. I have some days (up to a full week sometimes) where I feel an increased flare-up, or relapse of strong pains -but that subsides and then I go back to feeling nearly normal again.

I even have days where I feel very “Almost Normal”. Meaning that I actually feel as if my body has healed from it - but then it comes back, sometimes pretty bad.

What I'm saying here, is that PN - at least PN caused by drugs seems to be a struggle of the body to heal itself and there are lots of scary questions and answers to this affliction. Still, there seems to be real hope that I, and many others CAN indeed heal from this horrible condition -sometimes much faster than we think.

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, much better than I did 5 months ago, especially after taking the 4 vitamins I’ve been taking daily since august. (Vitamin C 120 mg, Omega 3 120 mg, Magnesium 250 mg and B-12 500 mcg). ...And more recently, Lycopene (for prostate health).

Please give me your opinion on my case, as I think it will help many others with similar circumstances... as well as your own thoughts about healing from drug induced PN.

Last edited by Jesse M; 11-30-2012 at 12:35 PM.
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Old 11-30-2012, 12:12 PM   #2
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I think you are very lucky.

Most of the web sites I found on fluoroquinolone damage, report it as permanent.

It might be connected to individual genetics, and for some people therefore might resist the damage that is more severe for others.
There is some evidence that this genetic weakness is a factor for statin damage too.(i.e. more likely serious in some and not others).

You are however not out of the woods in regards to your tendons.
Ruptures can occur any time after a course of fluoroquinolones, so be moderate in your lifting or stretching. We've had two male posters here pop their bicep tendons after these drugs.
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Old 11-30-2012, 01:01 PM   #3
Jesse M
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I think you are very lucky.

Most of the web sites I found on fluoroquinolone damage, report it as permanent.

It might be connected to individual genetics, and for some people therefore might resist the damage that is more severe for others.
There is some evidence that this genetic weakness is a factor for statin damage too.(i.e. more likely serious in some and not others).

You are however not out of the woods in regards to your tendons.
Ruptures can occur any time after a course of fluoroquinolones, so be moderate in your lifting or stretching. We've had two male posters here pop their bicep tendons after these drugs.
All too true - this is why I had to limit my weight lifting as well. Most websites about PN do NOT have many success stories -the ones that tell of their healing -I've seen only a few of these in a vast amount of research.

But I understand why. It's an instinct once our bodies heal from PN to never look back -and that includes posting anywhere that reminds you of such a horrible experience. I read this sentiment on other sites, too...and I even had the same feelings when I had my first healing strides. It's odd, but understandable.

When I first got PN it was a nearly constant horrible pain and I was extremely suicidal -this coming from a man that has a strong threshold for pain and a strong-minded person, too. I thank God, that I started feeling a bit better in the next weeks.

My point here is that like most doctors say, PN from drugs, for most people, does heal -it's only in the so-called extreme cases that it appears permanent.

The problem with me and most others suffering from Cipro nerve damage is the pain of PN, especially in the hands and feet.

This starts a huge panic when you find out that Cipro can cause "permanent" damage. Still, nearly ALL neurology departments that have experts on drug induced PN (They term it as "Secondary to drugs") say that it's only permanent in "Extreme" cases - and that it begins to subside and your body starts to heal within weeks and months.

I have experienced this first hand. The question is, what is considered "Extreme" and how do you define it?

It seems that some people will have an easier time to heal than others and this has much to do about what their bodies are like genetically, as well as how soon and what methods they use to treat themselves.

I still have PN unfortunately, but it is definitely fading away. Will I ever rid myself of it completely - I do not know. But I do know that I can live with it if I reach a certain point where the pain isn't very frequent or very strong.

In that sense, I have already reached that point to a certain degree and that's a very positive sign.

What is now important is to keep my health in better prospective to avoid flare-ups and relapses. This includes a much healthier diet, continuing carefully selected vitamins, and also learning to live a better life mentally - with less stress.

It's also keen to never take those medications again - or anything like them.
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Old 12-18-2012, 05:48 PM   #4
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Default Considering taking Vitmain B1 supplement

Does anyone know if "Benfotiamine B1 thiamine" as a supplement is positive for neuropathy? More specifically for Cipro-induced neuropathy?

More so is there any "bad" reactions to Benfotiamine B1 thiamine?

I thought I would take this specifically because I heard it helps diffuse such things as toxins and alcohol. Sometimes I drink about 4 Miller light beers on one day of the weekend (or every other weekend) and that would be just 4 beers over 4 to 5 hours. I was never a big drinker). I know drinking any alcohol is bad, but so far this has had no effect on my condition and actually seems to relieve my stress some.

I am in a nasty flare-up again (5 days into it -after a 22-day-in-a-row stretch of feeling Almost Normal) and am wondering if adding Thiamine B1 would help, even if I'm already taking 500 mcg of B12?

My last flare-up came in mid November of this year and lasted for 7 days in a row, that too being after feeling quite well, but similarly when the weather was damp, cold, and rainy. (Don't know if weather has any affect on PN though - could be just my mind.)

- About these issues - does anybody have any advice for me? I would greatly appreciate it.
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Old 12-18-2012, 05:57 PM   #5
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I take Benfotiamine every day, lots of good supplements! It is excellent.
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Old 12-19-2012, 02:08 AM   #6
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I take Benfotiamine every day, lots of good supplements! It is excellent.
Thanks. Is it just B1 thiamine or is there something else in it? Also do they sell this at GNC?
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Old 12-19-2012, 06:04 AM   #7
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You are not going to find Benfotiamine at a GNC most likely.
If they do have it they will charge an arm and a leg for it.

If you are leary of ordering on the internet, get a rechargeable charge card for internet purchases. That way if something is stolen from you the amount of $$ on it is very small and not a major issue.

We keep one charge card only for the internet, for this reason.

Some very large health food stores may have a section with Doctor's Best. Call around your area and see if that is likely.
Doctor's Best is a common brand in quality health food stores.
But buying locally can be up to 50% more expensive.

I get my Doctor's Best vitamins from Amazon now. Free shipping over $25.

You can start with plain old thiamine which is very very inexpensive. That is what I did. It is yeasty smelling and will make your urine have a strange odor. But it is sold everywhere, even grocery stores with mini pharmacies have it. The downside of this route is it is excreted in the urine very quickly whereas the Benfotiamine is not.

Starting Benfotiamine is 300mg a day for a month, then 150mg daily thereafter.
http://www.amazon.com/Doctors-Best-B...s=benfotiamine

Thiamine is 100 to 300mg a day in divided doses.

This is my Benfotiamine post:
http://neurotalk.psychcentral.com/post653193-4.html
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Old 12-19-2012, 01:36 PM   #8
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Thanks for the links. They have been very helpful.

In fact, It's hard to believe that I was NOT told about Benfotiamine, since I asked my neurologists over and over again if there was some-kind of vitamin or natural substance that could ease my PN pains and they simply answered "no." Although it was my therapist that insisted I take the B12.

After reading your links, I feel that I should have been taking Benfotiamine along with my other supplements long ago. I've never taken a Benfotiamine supplement before. I seen 1 type at my GNC -the reason I didn't buy it before was because I thought it was essentially the same as B12 and I didn't want to overdose by taking 2 supplement of the same make. Now I know they are not the same, but very different vitamins.

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mrsD: I want to ask you a few questions about yourself, and I hope I'm not rude or prying in any sense.

Do you work in the medical field? - you have an astonishing amount of helpful biomedical knowledge.

Could you tell me your personal story on PN - as in how you got it? Are you a diabetic? And how do you feel now, as in do you feel your life has improved on a daily basis?

I hope I'm not asking too many personal questions, just that I'm curious as to how well you have fared with this affliction.

--I also wanted to personally thank you for giving me some advice that really helped me. For example: I would never have started taking the right kind of magnesium without your advice.

Last edited by Jesse M; 12-19-2012 at 02:40 PM.
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Old 12-19-2012, 01:54 PM   #9
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I don't recommend things with "bad side effects"... on this forum.

The worst thing about the original thiamine I already mentioned.

You can search further on the topic to satisfy your need for more information.
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Old 12-19-2012, 03:06 PM   #10
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Quote:
Thanks. Is it just B1 thiamine or is there something else in it? Also do they sell this at GNC?
I get my Benfotiamine from Life Extention Foundation. It is a wonderful site. I love the webinars and help you get there. My doctor uses several brands like Designs for Health for supplements he advises, and he likes Life Extension Benfotiamine, Eye health supplements and others. I get my protein powder there also.
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