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Old 11-30-2012, 01:03 PM #1
Jesse M Jesse M is offline
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Default Health Advice for Peripheral Neuropathy & Drug Induced/ Toxic Neuropathy

.................................................. .................................................. ......................................

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 01:35 PM.
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Old 11-30-2012, 01:12 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, 02:01 PM #3
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Originally Posted by mrsD View Post
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, 06:48 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, 06:57 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, 03:08 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 12-21-2012, 10:06 AM #7
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I just went to my foot doctor because I had a very bad achilles problem and severe leg and foot cramping which i think was brought on by taking budesonide and a ciprofloxin eye ointment. I stopped both those medications and my other dr then put me on apriso for microscopic collitis. started that this last monday and on the same day while at the foot dr we also discussed the numbness in the balls of my feet. I had been there before for that problem. he thinks it is neuropathy even tho i had a nerve test for that. he said it is missed because it is not advanced enough. the foot dr gave me naprosyn. Anyway after 4 days of apriso and naprosyn my feet are burning, numb, painful, hard to walk. called the gastor dr this am but they are closed until monday. I think i should quit the apriso, does anyone know if that causes neuropathy to get worse? and continue the naprosyn. also, i think the neuropathy was actually better with the budesonide. what do you think? my foot dr gave me a list of supplements for neuropathy..vit c 1000mg, alpha-lipoid acid 100mg, n-acetyl-cystine 600mg, l-caritine 500mg, selinium 200mg, b-complex 100mg, b-12.
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Old 12-21-2012, 10:45 AM #8
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Apriso depletes folic acid. It would help to take activated folic acid called methylfolate. This bypasses conversion in the body, which is broken in 10-30% of people.

The ALA...is it r-lipoic stabilized? If not 100mg is not enough.
Switch to R-lipoic stabilized (the new active soluble form) and 100mg a day is enough. If you use the old mixture ALA you would need at least 600mg a day or more. It must be taken on an empty stomach too.

The B12 should be methylcobalamin, the active form. Same reason as the methylfolate. Ideally it is best to have testing before starting to see if you are really low. This information is useful before beginning. This has to be taken on an empty stomach too.

New research suggests that selenium doses should be lower. 100mcg a day is typically the new suggestion.

Steroids like budesonide deplete many nutrients. So it is a good idea to do the B complex. But perhaps 50mg a day is enough.
This steroid also depletes potassium, zinc and magnesium.
Potassium you can get by choosing foods high in this mineral.
Same with magnesium. But some people soak in epsom salts, to enable magnesium better. If you choose a supplement, AVOID OXIDE form, and go for a chelate or SlowMag, at 1/2 the RDA daily... which is 350mg elemental a day.
This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
You'll see it is a huge topic.

I think people with a mild colitis should try going sugar and fructose free. Fructose causes inflammation of the bowel, in 1/3 of adults in the US. Also carrageenan a common additive in many foods including dairy products is thought to irritate the bowel.

People taking steroids can also get elevated blood sugars. This can lead to PN and should be tested out. Steroids because of this blood sugar effect can flare Candida yeast in the GI tract and on the skin.
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Old 12-21-2012, 01:57 PM #9
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To Debter:

Also (as mrsD mentioned earlier) you should get methylcobalamin. If you get B12 you should buy it separately rather than get it in a B-Formula. This is because most B12 is of the (Cyanocobalamin) and NOT "methylcobalamin" which is the better form of B12 as its absorbed by the body better.

But getting methylcobalamin might be hard to get from a local store. You may have to order it from the internet. Regular B 12 Cyanocobalamin isn't bad to start with. (I've been on it for months) If you do get it, I suggest getting the sublingual tablets (the ones that melt under your tongue).
although unproved, the sublingual pills are allegedly more easily absorbed as well.

Also if you are taking any type of Ciprofloxacin, or any other Flouriquinolone drug -I feel you should stop taking it immediately and ask your doctor for something else.

You should never take any NSAIDS with it -that includes Aspirin, Alieve, and Naproxen because this enhances the side effects of these drugs.

...I hope you feel better soon.
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Old 12-21-2012, 03:34 PM #10
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Quote:
Originally Posted by debter View Post
I just went to my foot doctor because I had a very bad achilles problem and severe leg and foot cramping which i think was brought on by taking budesonide and a ciprofloxin eye ointment. I stopped both those medications and my other dr then put me on apriso for microscopic collitis. started that this last monday and on the same day while at the foot dr we also discussed the numbness in the balls of my feet. I had been there before for that problem. he thinks it is neuropathy even tho i had a nerve test for that. he said it is missed because it is not advanced enough. the foot dr gave me naprosyn. Anyway after 4 days of apriso and naprosyn my feet are burning, numb, painful, hard to walk. called the gastor dr this am but they are closed until monday. I think i should quit the apriso, does anyone know if that causes neuropathy to get worse? and continue the naprosyn. also, i think the neuropathy was actually better with the budesonide. what do you think? my foot dr gave me a list of supplements for neuropathy..vit c 1000mg, alpha-lipoid acid 100mg, n-acetyl-cystine 600mg, l-caritine 500mg, selinium 200mg, b-complex 100mg, b-12.
This is a paper on colitis and PN occurring together:
http://www.ncbi.nlm.nih.gov/pubmed/17715640
Quote:
Acta Gastroenterol Belg. 2007 Apr-Jun;70(2):226-30.
Acute motor sensory polyneuropathy (AMSAN) complicating active ulcerative colitis with a patchy distribution.
Zezos P, Mpoumponaris A, Koutsopetras P, Vounotrypidis P, Molyvas E, Vadikolias K, Moschos I, Kouklakis G.
Source

Department of Gastroenterology and Hepatology, 424 Military General Hospital, Thessaloniki, Greece. zezosp@hol.gr
Abstract

We report a case of acute motor and sensory neuropathy during a flare of ulcerative colitis. A 28-year-old male presented with a flare of distal ulcerative colitis despite treatment with mesalamine enemas and suppositories simultaneously with rapidly deteriorating weakness and needle sensation in both legs. Neurological assessment showed axonal sensorimotor polyneuropathy affecting mainly the lower limbs and to a lesser extent the upper limbs. Colonoscopy revealed moderately to severe active ulcerative colitis with a patchy distribution involving the rectum and the right colon. Vitamin and folic acid levels were normal. Virological, immunological and other laboratory tests were negative except for positive anti-ganglioside antibodies (anti-GM1). Ulcerative colitis and polyneuropathy improved when patient was treated with immunosuppressive therapy (corticosteroids, immunoglobulin and azathioprine). Peripheral polyneuropathy is a rare extraintestinal manifestation of ulcerative colitis and it is probably associated with an autoimmune pathogenetic mechanism.

PMID:
17715640
[PubMed - indexed for MEDLINE]
Now, I'd like to ask if you if only used one tube or so of the ciprofloxacin opth ointment?
This ointment has 3 milligrams of ciprofloxacin in a gram of base. The average tube is 3.5 grams.
In comparison, the smallest oral dose is 250mg twice a day.
This is a bit of reality check...and continues below.

This link gives blood levels measured in patients using the ophthalmic ointment:
http://www.alcon.ca/pdf/Product_phar...iloxan_eng.pdf

Typical absorption into the blood stream was 1.5 to 2.5 NANOgrams per ml of blood measured.
The typical blood level of Cipro 250mg is 1200 NANOgrams per ml.

What is a nanogram?
A nanogram (ng) is, therefore, 10-9g or one billionth of a gram. This can be written as a unit in the 9th decimal place: 0.000000001g.

It is unlikely therefore, that an ophthalmic ointment would deliver much Cipro to your body, or enough to create a systemic neuropathy. It is significant for allergic reactions however.
If a neuropathy were to begin I would expect it in or around the eye first.

But also I'd like to know how much or often you used that ointment. Most people only use a product like this for temporary infections, or surgery around the eye.

I have a thread here on drugs known to cause PN...
http://neurotalk.psychcentral.com/thread122889.html

The PN could be related to your colitis. Crohn's patients sometimes get an inflammatory arthritis with their pathology.
It is a similar autoimmune effect.

The link I gave you first on this post has treatment options for colitis that has other manifestations....and that is to use other immune suppressing drugs.

Some people just cannot tolerate mesalamine products. So yes, to ask your doctor and explain your potential side effects.
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