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Jesse M 11-30-2012 01:03 PM

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.

mrsD 11-30-2012 01:12 PM

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.

Jesse M 11-30-2012 02:01 PM

Quote:

Originally Posted by mrsD (Post 935884)
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. :D

Jesse M 12-18-2012 06:48 PM

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.:D

Sallysblooms 12-18-2012 06:57 PM

I take Benfotiamine every day, lots of good supplements! It is excellent.

Jesse M 12-19-2012 03:08 AM

Quote:

Originally Posted by Sallysblooms (Post 940578)
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? :D

mrsD 12-19-2012 07:04 AM

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

Jesse M 12-19-2012 02:36 PM

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.

;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;; ;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;; ;;;;;;;;;;;

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.

mrsD 12-19-2012 02:54 PM

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.

Sallysblooms 12-19-2012 04:06 PM

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.:)

Jesse M 12-19-2012 04:41 PM

Quote:

Originally Posted by Sallysblooms (Post 940851)
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.:)


I found this brand at GNC "Vitamin B-1 300" is that good to start with? I couldn't find the Benfotiamine yet. The pills I have are 300mg each. Do I take this once a day at 1 time, or am I supposed to break them into 2 and take them at different points in the day? It's important, as I could not find this answer anywhere. Maybe I can cut the 300mg into 2 - is that wise? ...please help.

mrsD 12-20-2012 11:12 AM

Quote:

Originally Posted by Jesse M (Post 940829)
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.

;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;; ;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;; ;;;;;;;;;;;

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.

If you look at my profile, you'll see my history.

I have told my story so many times, I am not going to do it again. enough for me. I've been online for over a decade now.
I started with PN in my feet and hands when I was about 30 yrs old. Mine began with hypothyroidism, and now I have some insulin resistance to deal with.
If you read the board consistently you can piece my history together yourself.
I prefer NOT to use drugs for my PN. The only one I have now RX is tramadol, and I only take 1/2 of that when in significant pain at night which is not often. Amitriptyline did not work for me, and it raised my blood sugar...so I only took it for a week.

Everything I put up here is substantiated in many studies.
I always put links up for people to read and decide for themselves, what they want to do. I know how to search for things, quickly because I know about them and know how to make accurate keywords. I learned that when I first started using the internet. I also type very fast, and that saves me time.
I search something every day and when I find links to help with PN I put them up here, for everyone to see.

I am very experienced with supplements AND drugs. 40+yrs.
I maintain a degree of privacy online for several reasons. And I would appreciate respect for that. This IS the internet after all.

If you start with regular thiamine, which is very inexpensive, and you only found 300mg tablets?????... Thiamine typically comes OTC in 50mg and 100mg tablets. You can start at 100mg a day and work up to a max of 300mg a day. This can work and give a clue as to being helpful. When that happens you can switch to the better form benfotiamine (since you cannot find it locally).

BENFOTIAMINE is different, and handled in the body differently.
So once a person is on it for while I prefer to suggest that 150mg a day in enough. I don't want people to develop vitamin dependency issues, and because I am conservative, I don't really believe in high doses of things...as research is not closed on these topics.

If you choose the thiamine 300mg you found, break it in half and take the 1/2 tablet morning and night. Regular thiamine causes an odor, in some people, but it is harmless. The Benfotiamine has no odor that I can detect in myself, and others don't report that either.

You could go to WalMart or Target or anywhere and find smaller dose tablets for less than $4.00/100. GNC has hugely inflated prices on things as well as many "health food" specialty stores who are profit driven. WalMart has an excellent supplement aisle now, with quality manufacturers. Look there, for better doses of thiamine. The majority of generic items in large stores in the midwest all come from Perrigo company. A quality place for decades.
http://www.perrigo.com/
http://en.wikipedia.org/wiki/Perrigo

Jesse M 12-20-2012 02:27 PM

....First off, I want to genuinely apologize if I offended you in any way. I should have had the common sense to look up the things I wanted to know concerning my curiosity about you. You have helped me more than some of my doctors at this point and that is very valuable to me. I am truly impressed and grateful for your advice.

There may have been a sense of desperation in my posts earlier. I have had bad flare-ups last as long as 7 days before, but not past that...But this one made me particularly more depressed than the others. The weather here has been insane, too -over a week of damp, cold rain and waves of thick cartoonish fog -very odd for December in Chicago. Maybe that had something to do with it.

I did take a 300mg tablet of the B1 (as Thiamine hydrochloride) As for the BENFOTIAMINE I will have my daughter order it from the net. I searched desperately for it in 5 stores yesterday. When I went to GNC, they said they didn't have it at all, the same was said in Cub Foods, Walgreens and CVS.

However, my doctor told me that for now -the B1 I bought is fine and it should help.

I don't and can't take any medications for pain at all. In fact, I hadn't taken any pain medications since I got PN 6 months ago, so dealing with extremely bad flare-ups has been a real struggle for me.

As of now, I'm feeling quite better than yesterday. Any advice that you or anyone else can give me concerning my condition would be gratefully appreciated as always.

Jesse M 12-21-2012 02:22 AM

I never heard of the term "Vitamin dependance" before and until recently, it never occurred to me that vitamins are much like medicine in many ways. I was wondering if quitting a helpful vitamin suddenly could cause withdrawal symptoms, as a medicine could?:confused:

mrsD 12-21-2012 07:16 AM

Yes, it can. But typically it only happens at very high mega doses.
It was first illustrated in people following Linus Pauling, and taking massive multigram amounts of Vitamin C (more than 10 grams a day and much higher).

People also inherit dependencies that are genetic...requiring high doses for life. Some babies are born with B6 dependency, and have seizures without high dose therapy.

It remains not too common, however. Dr. Bruce Ames PhD, biochemist, believes many people have genetic errors in B vitamin chemistries, like the MTHFR polymorphisms, but affecting other B's.... It is his belief than alot of illness is due to inability to run enzyme systems because NOT ENOUGH of certain B's are being consumed for these errors.

So the best way to supplement is to be sensible about it.

You can Google "vitamin dependency" and learn more about it.

debter 12-21-2012 10:06 AM

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.

mrsD 12-21-2012 10:45 AM

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.

Jesse M 12-21-2012 01:57 PM

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.:grouphug:

mrsD 12-21-2012 03:34 PM

Quote:

Originally Posted by debter (Post 941427)
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.

Jesse M 12-22-2012 07:18 PM

Beer and neuropathy is it bad?
 
...My ongoing debate about neuropathy and PN is with a new friend I met on the net recently. He's another person other than me, that has PN from antibiotic use although it's not the same antibiotic - I feel that there is a great similarity in treating it. I could be wrong.

Here is our argument. I feel that drinking beer or any alcohol is not a good idea for anyone with PN. In a nutshell, if you can't stop drinking entirely, you should limit your alchol use and when you do, make sure to lessen the load some by drinking a small amount of beer over a long amount of time...meaning stretch out your beer by drinking slow so that you do not drink more than you should.

I feel this buffers your body from too much alcohol while your body processes the drinks. Also drinking a lot of water, as well as eating a decent meal afterwards seem to help me.

After my PN I never drank enough beer to get a hangover and I never was a heavy drinker to begin with so I "Buzz" pretty fast anyway.

But, like me, sometimes it is difficult not to drink a few cans of beer (about 4 light Beers) every other weekend or so, especially during holidays and social events (the only time I drink.)

I only drink light beer which has a fairly low alcohol content in it. I don't drink more than a six pack (most times about 3/4 beers max) and if I do drink that week it's only for that one day of the week.

My friend believes that since his PN is not from alcoholic roots that he can drink more than that. I'm not saying this guy drinks a lot. He does not, and in fact, probably drinks not much more than me, about two days out of the week and around a six pack - still that is at least double the amount that I drink. I also avoid all hard liquor. While this guy will drink a shot of Vodka from time to time.

He says that for alcohol to affect nerves, even damaged nerves, you have to drink hard liquor, or an amount of beer much larger than a 6 pack - or drink a few every other day to affect your nerves.

I'm no expert, but I disagree with this. I think alchol can start irritating your nerves after just a few beers for most people. I often feel quite well with no flare-ups for days or weeks even after I drink 5 beers, but I rarely drink that much. Truthfully I simply don't know the answers to our debate.

As he says, peoples' tolerances for alcohol are all different and points out a diabetic friend of ours with PN that drinks over a 6-pack nearly every Saturday.

I often feel some peer-pressure to drink, mainly from depression when I'm at a social event -I want to feel that happy little buzz and join the party - but I'm very wary of how much and what I drink.

Personally, I feel anyone with PN shouldn't be drinking alchol at all, but I know this could be difficult for some, including me.

Does anybody here have similar feelings on these ideas? I hope I get some replies on this as I think this is one issue that many people often think about.:confused:

...

mrsD 12-22-2012 07:48 PM

Here is a graphic showing equivalence of various alcoholic drinks:

http://rethinkingdrinking.niaaa.nih....ndarddrink.asp

Hence 4 whiskeys (6oz) = 4 -- twelve oz beers.

The body does not separate out what form the alcohol is in.
A breath test by a police officer will register intake independently from the type of alcohol consumed.

Remember CONGENERS in various drinks may affect nerves, as well as gluten (beers) and yeasts.(in wines and beers).
This is what a congener is:
http://en.wikipedia.org/wiki/Congener
Congeners are thought to create hangovers. Hence the quality charcoal filtered vodkas, which have them removed.

People with gluten intolerance will have significant reactions to beers independently from the alcohol content. There are gluten free beers with alcohol in them.

It is highly idiosyncratic how people with PN will respond to various alcoholic beverages, therefore.

% alcohol content of beers:
http://www.alcoholcontents.com/beer/

If you are still taking that clonazepam, you should avoid alcohol consumption, but you probably know that already.

Jesse M 12-22-2012 08:43 PM

--Thank you, mrsD: this is very helpful. I'm actually surprised at how many people ask me about drinking beer and nonalcoholic neuropathy. ...Especially at this time of the year.

For me, I don't feel any flare-up from drinking a few beers on the weekend, but then again, I'm very cautious about it and limit my drinking to low alcoholic beer and just a few over a few hours. Now that I think of it -about 4 beers in 4 hours. I "Buzz" quickly so I never drink more than a 6-pack on a drinking day.

I skip a week a lot, too, sometimes not drinking a beer for over 2 weeks or so. But honestly with the holiday parties coming up, it seems harder to dodge the urge to sip a few.

I do not mix Clonazepam with alcohol or - leastwise I don't think I do. There's at least 8 hours to a full day between me drinking a few beers and taking a clonazepam.

But this was not always the case - months ago, I would take the 0.5 pill about 3 hours or so after a few beers. The only thing I noticed then was an increased drowsiness. Still, I do my best to avoid it and certainly never mix them outright.:winky:

Jesse M 12-22-2012 09:45 PM

Neuropathy & Clonazepam
 
---To mrsD: I tried to get off of clonazepam cold-turkey with bad results - meaning that my PN flare-ups got worse just 3 days after ditching my usual twice-a-day 0.5 pills. Then I tried to do so using low dose Melatonin 1 as a substitute, but that didn't work out too well. (I was afraid of the possible side effects of melatonin so I gave up that attempt very quickly).

I was once on 2mg of Clonazepam per day for about 2 years in the past (before that just 1mg) and now, 0.5 - so far the dose reduction has gone well over the last 5 months. But there will be a time soon enough where I will try to get off of it again.

My goal is to give up ALL medication and just rely on vitamins for my health conditions. I hope that sounds realistic and not silly. As it is, clonazepam is the only drug I take other than my staple of vitamins.

My problem is actually my PN - my doctor wants the severity of my PN to go down before attempting to wean me off of the pills. Indeed, for long periods at a time, my PN does seem to fade away quite a bit - but I'm afraid that attempting to wean off of it at those times would cause me to relapse.

...also about the previous issue of alcohol, how long am I supposed to be off of Clonazepam before I have a drink? --Is my current 8-hours difference alright?

I hadn't noticed a thing concerning this other than being tired more. I hope it doesn't instigate PN flare-ups...though that never happened to me.

Truthfully, I was absolutely furious with my doctor when he told me a full year after taking clonazepam, that I might be addicted to it. He told me that small dosages don't addict patients -and I fell for it.

So, the guy actually got me addicted to a drug without letting me know it was highly addictive! ...oooooh, that freakin' quack!

Anyway, I don't want to be addicted to any drug ever -and to be honest, I don't even know if I AM addicted to it -I just assumed I was because I've been using it for so long. (5 years now -but no more than 2 mg per day in the past) Don't know if that makes a difference. :mad:

mrsD 12-23-2012 06:21 AM

Yes, it is difficult to totally wean off clonazepam. I mentioned that to you before.

Of all the benzos it binds very tightly to receptors. Some people take 6months or more to get off it completely. The serum half life for clonazepam is 18 to 50 HOURS. That means only 1/2 of the drug is gone within that time frame. So waiting 8hrs to drink is not wise, as you are getting a synergistic effect. This is why getting off this drug is very problematic. Also your age factors into this. Older people, have slower renal clearance of benzos, and for this reason the 1/2 life would be much longer. So the drug can build up in the body in elderly patients.

You need a careful SLOW taper. Klonopin makes wafers you can split to get to lower doses more easily.
http://www.drugs.com/imprints/1-8-1521.html
This photo is of the .125mg wafer.

I believe the clonazepam is masking your PN, and once off of it you will have much more pain for a while. Over time tolerance to this drug leads to higher doses to get relief...and becomes a vicious cycle.

There are websites devoted to benzodiazepine withdrawal, and all of them suggest very slow tapers (most doctors go too fast).

Melatonin is not going to work as it does not sit on GABA receptors.
Melatonin is only for sleep. It is not a tranquilizer. The inhibitory receptors benzos sit on, prevent excess firing and are rather unique.
You may find some suggestions for this on the benzo withdrawal sites.

Jesse M 12-23-2012 06:53 PM

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

Thanks -I did not know about the waffers so that's something to look forward to when the time comes.

As for beer and clonozapam, I'm sure you're right. My doctor says separate them for at least 8 hours, but he probably means more. Still, he says that the only synergistic effect that 0.5 would have at that time is an increase in drowsiness - a hazard when driving, no doubt. Truthfully though, I haven't noticed a thing. Maybe because I'm a big guy (6 feet tall, 240 pounds) body size might be a factor as well.

I'm a bit confused about one of the statements you made...You said: "I believe the clonazepam is masking your PN, and once off of it you will have much more pain for a while."

This isn't a very good incentive to get off of the Clonazepam.

Do you mean that my PN pain is actually much worse than I feel it is -and that if I get off of Clonazepam, I will return to stronger pains? --If that were the case, it would be better for me to stay on the clonazepam, as PN is the worst antagonist here. Perhaps this is why my doctor doesn't want me to wean off of it yet???

Or do you mean that I would get stronger pains for awhile (due to Clonazepam withdrawal) then return to my usual PN cycle, which is not much pain, leastwise not much pain between flare-ups?

Another thing that's puzzling for me concerning Clonazepam - Since I dropped in dosage, I still feel it's effecting me the same -I don't feel like I need to up the dosage or take more than what's given to me. In fact, I've been steadily dropping to lower dosages over the last year.

The only time I take an extra pill is when I'm under harsh stress or when a mega-flare-up occurs, which doesn't happen often, thank God.

In fact, there are days, I forget to take my nighty pill and feel fine. Many times I feel fine even from just one 0.5 instead of the 2 per day mandated for me. Luckily that seems to go against the tolerance-issues I've heard of.

Do you think that taking the vitamins I do has something to do with that?:confused:

Also about melatonin -my doctor told me that retirement homes often use melatonin to get elderly patients off of Clonazepam. I've read some short articles about it, but they seem vague and probably way out of date, too. I don't even know if they still do that. Do you know anything about that?

mrsD 12-24-2012 06:50 AM

The reason you don't notice a day or two missed dose is because Clonazepam has such a LONG half-life in the body. It is still there during the skipped periods.

Wait a week or more and you will notice something. It appears that your anxiety disorder may be due to a defect in the GABA
system, and you have a threshold minimum you need to provide with the drug. And there is a big difference in the actions of
habituation vs addiction. They are not the same. In habituation the body NEEDS a drug to function and withdrawing it causes regression and increased symptoms. Addiction is a craving and desire for the drug for euphoric/enjoyment purposes. The body rewards the use of the drug with a dopamine hit, and thus the dopamine release is the trigger for the craving. Doctors often do not understand this difference, and misuse the terms often.
So do lay people.

The benzodiazepines have anti-convulsant properties. I have an explanation of this in the Subforum:
I strongly suggest you learn how neurons work:
http://neurotalk.psychcentral.com/post828704-7.html
and
http://neurotalk.psychcentral.com/post829772-9.html

Anti-convulsants are commonly used in the treatment of nerve pain. They dampen signals. When suddenly removed, they will cause a rebound of pain.

And yes, it is not an easy path...to discontinue this drug. Everyone who has to do this for some reason, suffers in many ways.

It will be your choice as to whether you want to continue in the tapering to zero of this drug.

There are supplements that help with anxiety, and hence PN as well, by affecting GABA receptors in a more natural way.

1) Theanine which is in green tea. Joano brought to this forum information from Dr. Blaylock's newsletter about this in fact.
This is the thread:
http://neurotalk.psychcentral.com/sh...light=theanine
Since then I've been using Doctor's Best Theanine at bedtime with good results. My effective dose is 300mg. Amazon has this at affordable prices.

2) Another useful supplement is PharmGABA. Normally GABA is not absorbed orally, but there is a new form, from Japan that has some oral activity. I tried this last spring when our kitten went missing...it was a very upsetting, stressful time. And this product worked well for me. I've had anxiety at times during my adulthood, and I think this comes from my unpleasant childhood.
This is not expensive if you get it at Amazon. I took one capsule twice a day. It is not addicting and has no sedative effects on me. Doesn't affect driving or create sleepiness.

Either or both of these can help with anxiety, and I do think the Theanine at least, helps with sensory pain issues as well.
I never needed the higher doses that Dr. Blaylock recommended.

As far as the elderly go.... Doctors don't understand drugs at all. Many elderly develop sleep problems, and are given this drug or another benzo (this practice is less common today however). But we now know benzos are BAD for the elderly because they cannot clear the drug as well as a younger person. So because melatonin is used to fix sleep cycles it is tried. But the CAUSE of the sleep disturbance in the elderly may be low B12 levels. Methylcobalamin is the cofactor in synthesizing melatonin in the body. People over 50 or those taking acid blocking drugs start to lose B12 because of poor absorption due to lack of intrinsic factor in the stomach. Intrinsic factor is the carrier of B12 from food into the bloodstream. Low B12 then leads to poor sleep because melatonin cannot be made properly. So melatonin WOULD help these people. But it does not work like benzos do biologically. So you cannot compare them. It is like apples vs oranges.
Both drugs promote sleep...but by different mechanisms.

So the bottom line is you or your doctor don't know what will happen if you get off the clonazepam completely. The initial rebound can be worse than your typical baseline pain. That would be temporary hopefully, and you would return to your baseline with time. Drugs that affect receptors in the body can CHANGE the number of receptors present. We know that opiates do this. If the benzos do this, and I suspect they do, considering how hard it is to get off them completely, it is possible you have changed your system in a more or less permanent way.

You will have to decide what to do. If you are thinking of a "cure"... that is not likely for you with Cipro as a trigger. Basically PN is for life. We all understand that here. Once nerves are damaged they often do not return 100%. Where severed nerves grow back, they will often misfire and send odd signals as a result. So accepting that you will always have some form of PN discomfort is important. You will need to learn to deal with some level of chronic pain. Many of us do that daily.
You can control anxiety to some extent with breathing exercises, and mindful meditation.
This is a link to a very good exercise that was posted on RSD forum recently. It is a guided example of diverting your mental attention away from pain or noxious stimuli.
http://www.openfocustraining.co.uk/exercise.html

I've used similar relaxation (auto hypnosis) techniques for over 30 yrs. They can be very effective.

Jesse M 12-24-2012 01:22 PM

I agree with you on almost everything you've said here -and I wasn't aware there was natural alternatives to handle the anxiety issue either. That was very helpful.

The only thing I disagree with is your statement that PN is for life. When PN first hits some people, a lot are suicidal - so, not a good thing to say...especially if it's not entirely true.

Are you saying that you never known even one case of PN that has healed?

It's also important to understand that having hope of healing isn't denial either.

Because PN comes from very different causes, it's impossible to tell how it will affect any one individual.

A permanent case may be true for some people, but certainly not all. According to Dr. Roos, the lead neurologist for the University of Chicago's neurology department; - a man with over 30 years experience in the field - more than half of the people that get PN DO heal from it, though it does take time and the right treatment, which is different for each person.

More so, I've met people who have healed from PN -2 actually -one a diabetic and another man who was floxed from the drug Flagly.

I think the question here is how PN devolves. Clearly, some severe cases may be permanent, but others may not. ...And even if it is permanent, big healing strides do take place.

As for me, I don't expect a cure. I'll be happy if I can get the pain down to a level that I can deal with. Already, it went from unbearable to liveable -and between flare-ups, sometimes nearly non-existent and this has been only in the time span of less than 5 months. Not bad since even Dr Roos, says it takes about 7 months for drug-induced neuropathies to really start healing, although like my case, nearly all of the severe stabbing pains and such fades within weeks.

This might have to do more with peoples' own ability to heal as well as what is actually causing the PN to begin with.

My case with Cipro is not so dooming. Don't get me wrong, I will be disabled all my life from this one mistake from an incompetent doctor. I won't be able to exercise or lift weights as much as I used to. And I will probably have some degree of light pains and many mental emotional issues for the rest of my life. Still, there are and will be many people who haven't had a case as severe as mine that will heal - completely.

Many people take the full 2 months of Cipro 500mg with no neuropathy at all. ( I warn AGAINST this) -some do get it, I know one man that has the exact same Cipro problems I do - but he took it for 6 weeks while I took if for under 3. Both of us were prescribed it for a prostate infection...unfortunately an all too often prescribed drug for it.

Obviously, not everyone that gets PN from Cipro (or anything else) is doomed to have PN permanently -leastwise not painful PN. This is not to say that over the months or years some flare-ups will return -I'm sure of that, but basically over time, it will heal. At least to a degree where you can get your life back.

So here is where I DO agree with you: that PN might be for life, but you will get better, eventually to a time where you can enjoy life again.

...PS - I hope you found your kitten - I love cats.:) I also wish you Happy Holidays, you've helped so many people here.

mrsD 12-24-2012 01:43 PM

No the kitten is gone, perhaps forever. But I still look outside for her. I hope someone nice took her in and she did not suffer some
painful situation or death. Long story, which came back in Oct, when neighbors thought they saw her and contacted me, and it all began AGAIN. Still nothing after many long hours staking out the area with bait/food. I gave up finally. sigh.

Some drugs, like Macrodantin, cause neuropathies, but how it does is not permanent. It is always possible that a toxic one will reverse. I think the most likely reversal comes with nutritional types with deficiencies. If caught early on, supplying the nutrient, which is most commonly B12 may lead to some repair. But if the cells die, that are damaged, that is it. Chemo PNs don't resolve as a rule. Cipro damages DNA functions, (as do Chemo drugs), and that is why its PN is more serious than perhaps other types.
Quote:

Mechanism of action

Ciprofloxacin is a broad-spectrum antibiotic active against both Gram-positive and Gram-negative bacteria. It functions by inhibiting DNA gyrase, a type II topoisomerase, and topoisomerase IV,[87] enzymes necessary to separate bacterial DNA, thereby inhibiting cell division.
from http://en.wikipedia.org/wiki/Ciprofloxacin

Doctors may say things to keep you positive, just in case some aspect of your pain, is being generated by stress. But we don't see total resolutions on this forum. We see posters returning with no further progression and some improvement (like me), but no cures. Heavy metal damage also is more or less permanent. And Thallium which is a heavy metal in ant poisons, is lethal. No antidote for that exists as yet.

And there are people damaged by one dose of fluoroquinolones.
The author of Bitter Pills, Stephen Fried's wife has a permanent seizure disorder brought about by Floxin oral tablets. Hence he wrote the book. You might find it interesting. I read it many years ago (bought the book). You are correct about not everyone is damaged by these drugs. That remains a mystery until someone uncovers the reason(s). That will most likely be a genetic answer.
http://www.amazon.com/Bitter-Pills-I...s=Bitter+pills

Jesse M 12-24-2012 02:02 PM

I'm sorry about your kitten - the most likely scenario is someone saw it and took it home. That's what happens in my neighborhood. I'm sure it has a nice home, and I'm not just saying that, I believe that's what happened most logically. -kittens are cute - people like them: result - adopted kitten.

I genuinely hope you feel better for the holidays, too. God Bless.:grouphug:

mrsD 12-24-2012 02:10 PM

Thank you Jesse. She was an 8 month old kitten, and almost full grown but very very handsome and nice temperament.

I had exposed her to a little outside like I do all our cats, and she was very good at coming home, coming when called, and using the cat doors(for almost 4 wks). She just vanished on Sunday around 6pm.
She had a microchip and was spayed.

BTW I just added a bit to the post above, you may have been posting and not seen that yet. Info on Cipro.

Here is her photo: She grew up in an outdoor only farm area place, and we kept her inside until early May or so. I was hoping those feral beginnings would have dwindled...but I guess not.

We have a new black kitten named Maya, that we adopted upNorth in the UP. She is quite the character and has a very colorful personality, and having her helps (but not all the time).

Jesse M 12-25-2012 06:50 PM

I read the extra wiki article on Cipro. My doctor mentions this to me in positive light, citing that he believes I got PN because I was prescribed NSAIDS along with the Cipro antibiotic. Essentially, he thinks I would NOT have gotten PN if I was not taking naproxen/Alieve along with it.

I don't know if this is true, but it seems to make sense.

The odd thing about this is that she feels certain that I will slowly heal, as she believes the damage to my nerves was interrupted when I stopped taking the drug.

Indeed, I did stop taking the drug once I felt the side effects. Basically that my nerves were damaged but notto a point where it's irreversible - or as she put it "not xtreme or severe".

Sometimes I get really depressed and I don't listen to their advice, (this coming from 2 neurologists) but I have to admit that their stern prognosis seems to be coming true.

A long while back, they told me that the severe pains would fade away as the weeks passed. That did happen. They also said that I would suffer from "mild-intermittent" pain for some months before they lightened. That has also occurred.

They also warned me about flare-ups and circumstances that could aggravate them - they were right about that, too.

Lastly, their prognosis and advice for me is as follows: "You will continue to heal as your nerves repair themselves. But bouts of depression can cause anxiety which causes excessive activity in the brain, which causes pain."

I think they mean that depression actually causes PN pain, which I thought was silly when I first considered it, but from other peoples' stories, I'm starting to believe it.

My neurologists say: "You've healed about 70% already - and you now only suffer from light pains and some bad flare-ups from time to time. If your nerves were damaged badly, you would not have felt this well in such a short amount of time no matter what meds you are taking."

She followed up with this last sentiment which I feel is probably the truth of it. "You'll eventually heal up, by next summer you'll most likely be healed to a point where you won't notice the pain much, if at all some days. But you'll probably always get some flare-ups from time to time that will be fairly painful, before returning to a normal health cycle. As someone that can initiate nerve pains from depression -it's best to take a better attitude about it."

Whether depression "induces" PN pain, I don't know. What is she saying, that PN is partially psychosomatic?

It seems she means that I will always have PN, but eventually at a level that will be far less painful and much more controllable. I have to agree with her, since this seems to be the level I'm already at right now. If I do get to the level she mentions by next summer -I'll be more than satisfied with that outcome.
.................................................. .................................................. ..
By the way, your cat looks a lot like mine. But mine is now 11 years old. She's still in fine health, though I feel she spends too much time out in my yard at night. (I think she's too old for that stuff now-a days. LOL) And I'm finding myself spending extra money for healthier cat foods and such. My cat has also been a long time freind to me, not just a pet....Merry Christmas and Happy Holidays.:)

Jesse M 02-27-2013 03:21 PM

I just found a very interesting article about Cipro and flouroquinolone antibiotics from a Doctor Bob Martin - a medical researcher. The article is based on older info, but surprisingly it echoes much of what we all talk about here. What is surprising is that it's coming from a medical professional, a rare thing indeed.:)

http://www.doctorbob.com/dm--reactions-to-cipro.html

mrsD 02-27-2013 03:50 PM

This article was written by Dr. Jay Cohen, MD... whose website
is linked to often here. (not by Dr. Martin).

quote from the end of the article:
Quote:

hope that your condition resolves soon. Sincerely, Jay S. Cohen, M.D.

1. Cohen, JS. Peripheral Neuropathy with Fluoroquinolone Antibiotics. Annals of Pharmacotherapy, Dec. 2001;35(12):1540-47.

Copyright 2003, Jay S. Cohen, M.D. Readers have my permission to copy and disseminate all or part of this newsletter if it is clearly identified as the work of: Jay S. Cohen, M.D., The Free MedicationSense Underground E-Newsletter, July-August 2003, www.MedicationSense.com.

Jesse M 02-27-2013 07:51 PM

I stand corrected, though on the top of the site is said Dr. Bob for some reason. LOL Thanks.:)

maya100273 03-20-2013 07:40 PM

Thank you!
 
Your post gave me hope, as I am freaked out. Just took the antibiotic for 3 days (for a bad cold/painful sore throat/ear pain) and that was it, within 72 hours, I felt the symptoms. I had been diagnosed with peripheral neuropathy 5 years ago (due to pinched nerve/disk issue), but after rehab, the symptoms went away (numb arms/hands) at night. This time, I get day symptoms during the day, tingling, burning, hands, feet, etc. Hard to tell which way it's trending right now, but it's scary. I wish I had known of this side effect, as I would never have taken this drug. Your words gave me hope. I'll try the vitamins.

How are you feeling?

Quote:

Originally Posted by Jesse M (Post 935881)
.................................................. .................................................. ......................................

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.


P Moore 04-30-2013 01:22 AM

Help
 
Jesse M Please message me regarding the Cipro induced toxicity. I have a very severe case of it and could really use some help.

Jesse M 04-30-2013 01:51 PM

Healing from PN really Happens
 
Quote:

Originally Posted by P Moore (Post 979378)
Jesse M Please message me regarding the Cipro induced toxicity. I have a very severe case of it and could really use some help.

This is going to be a very long post, almost a darn book. LOL But please bare with me -there is some important things said here.

First off, understand this: Despite what some people say this is NOT permanent -it may be long-lasting, but it will get better over time.

Neuropathy is not the disease itself, but symptoms caused by something else. They can have very different causes and each person is unique and WILL have a different length of healing.

If you have Cipro damage it is similar but definitely NOT the same as pn from diabetes, chemo-therapy, or anything else. The cause is much different and so can the outcome.

My advice is to find the right treatment right away. (This is, in actually healing the nerves via a strong and careful vitamin regiment) This has indeed helped me tremendously. I do not take medicines to treat the pain of Neuropathy.

I do take 1 low-dose anxiety pill (Clonozepam 0.5) per day, as I had anxiety before Cipro-pn anyway. But this does NOT mask the pain, it simply stops some of the activity in the brain that causes stress. (I checked with my doctor on that). But I do NOT suggest taking anything like Clonozepam since it can be very addicting for some.

I do take quite a few well-chosen vitamins, but no drugs. The reason for this is because I could honestly gauge how I am healing and the news is positive.

I can't speak for anyone other than myself, but I learned that I had to discover, research, and treat myself, mostly because many neurologists, or many doctors for that matter, don't even want to acknowledge that Cipro causes such horrible PN. Still I have found several doctors who DO cite Cipro and its relatives as very harmful drugs.

Right away, I kept and continue to keep a daily journal (very important) of my progress on both a regular paper calendar and a MS word file. It has now been 9 months since I quit taking that Cipro and I am still suffering from its neuropathy pain, almost all nerve pain. But it has dropped considerably since it first hit.

I know this beyond a doubt, because I keep a journal of my healing where my healing strides have been clearly recorded. There was a time when I had bad pains all day, every day, for nearly 2 months.

These included, burning, needle stings, cramps and stabbing pains. And they could occur anywhere on my body, but mostly in my feet and hands. They made me think of suicide very often - this mostly from the false notion that it is permanent.

Then, it started to just be light pains, then to slight pains and now to slight pains throughout the day but some week-long flare ups every month, - but there are many days during the month were I feel quite fine, with only very light, barely noticeable pains -the kind I could live with without hindering my happiness or quality of life. ...And that is the goal to reach. Remember that.

Regarding so-called "permanent" nerve damage: any expert doctors in PN (Such as the CCPN "Chicago Center for Peripheral Neuropathy" ) will tell you that permanent damage occurs only in extreme cases. But even in extreme cases, your nerves can heal to quite a degree.

The problem is that no one can tell you if you have an extreme case or not, as the tests for nerve damage are not well understood and people's bodies vary so differently regarding tolerance of the drug.

This is important: You have to understand this, too - you do NOT have to heal completely to live a happy, unhindered life. All you have to reach is a certain point where the pain is not affecting you much. Trust me - that alone will be more than enough to make you jump for joy. Even still, if you can reach that point, you'll probably heal up completely as the years pass.

Certainly I once felt I had an extreme case, but since I'm healing at a pretty fast rate - I now feel that was not the case.

Today, currently; I still suffer from Cipro induced nerve pain and damage. But it comes and goes in cycles. I do feel slight or light pains everyday, but they are sometimes not even noticeable. Some are just weird, like a sudden pinprick on the top of my scalp or even a sharp pain on the tip of my tongue. Nerve pains hit anywhere they like at any time, but don't worry, they do go away as quickly as they came, that is the nature of these little flare-ups.

Very often a flare-up of pain will come simply due to your nerves healing -this is a painful process itself.

However, when I am in a flare-up, they can be downright disabling, even causing me to have mini-seizures and mental meltdowns. Still, these huge flare-ups only last about 5 days (far shorter than they did only months ago.)

Now for the wonderful part: I average about 18 "Near Normal" days per month now. This means over the last 3 months, out of 30 days per month, about 15 to 18 of those days, I feel literally Nearly Normal - meaning just having very slight almost unnoticeable pains. If I could get to that point for the whole month, that would be enough for me - I'd be very happy with that indeed.:D Meaning that I do not have to heal completely to live a really happy life, though I still hope for it.

As I'm writing this, I'm coming off a 2-day flare-up which could have been caused or irritated by extreme weather changes (More than 2 days of rain in a row usually does it for me) that, or high emotional stress.

Also you have to keep trying to take care of yourself. Consider this: I have never been a heavy drinker in my life, but since I got PN I have been tempted to drink beer to ease and escape my stress.

This is NOT a good idea as alcohol effects the nerves. However, I do drink about a 6-pack of light beer for 1 Saturday of the weekend now - making sure I take ALL my B vitamins to hinder any alcohol related nerve damage. ( BTW, Alcoholic Neuropathy is caused by either the poisoning of the nerves with alcohol OR by the depletion of B vitamins - no one is yet certain). ABout B-Vitamins; try not to take too much B-6, this can cause pn to worsen.

Still, though I don't drink much, I am trying to cut down my alcohol consumption. This is not as easy as it sounds, since I'm always so tempted to join-the-fun on the weekend and forget about my stresses. Also, I have to drop my anxiety pill those days as well because they don't mix well with beer.

What I'm getting at, is it's tough to discipline yourself and no one is perfect, just keep trying to do things like drink less alcohol, less overtly sweet sugars and brush your teeth with a NON-fluoride toothpaste like Toms of Main - just avoid anything that can, or might, irritate your condition. People tolerate different things in different ways, so what works for you may not work for others. It's a trial and error process concerning what irritates your personal symptoms. Even the weather can be a big factor if it gets too hectic. Above all, do not take anymore antibiotics or drugs that have even the slightest chance to worsen neuropathy.

However, please don't get fanatical about it - moderation in taking in anything is the key, otherwise, you'll stress yourself out about it and make yourself worse! I certainly did more than a few times.

More so, do NOT - and I repeat this: do NOT take in all the internet forum "horror-stories" of Neuropathy. I did this and I got very, very depressed! They are misleading, because they do not tell your personal story, so they do not help you. Stick to positive posts...Please trust me on this. It makes a big difference on how you feel and also keeps your mind on the reality of the condition which is not a "Doomed" scenario.

There is no doubt that people can and do heal from Cipro induced peripheral Neuropathy. You don't see it much on the net, because people just want to leave that horrible experience behind them, let alone write about it. I, myself, feel like that and I'm just starting to really heal up...and I still find it tough to write about it.

Now, each month I feel a little bit better and I'm so glad about that. Thank God. And I Know that you will too.

I have found another young doctor who knows about this and has given me the advice below, which I hope can help you too. I found him to be the most accurate of all the docs I've seen so far. He's the only doctor who read my personal medical records fully about Cipro-induced pn, and he believes that I will heal either near completely or truly completely within about 2 year’s time. While examining me off and on the record, he personally said this to me: He told me these exact words;

“It’s a very bad side effect from Cipro. You shouldn’t be afraid, it’s NOT permanent. Don’t listen to the stuff you read on the Internet, those people are NOT you – every person is different, they have different causes for their problems. It will go away and it’s just a matter of TIME before it fades away. God made our bodies to heal. In the meantime, keep taking your vitamins, take something for anxiety and pain and also to relax and not think about the pain, keep your mind on other things and time should pass more easily. You will heal, be patient and go on living your life the best that you could.”

I really hope this helped you all.:)

NyBabyMama 06-01-2013 11:11 AM

Thanks
 
I want to thank you for the uplifting post on toxic PN. I didn't take Cipro, but took Flagyl and had an EXTREME reaction.

I've gotten extremely painful PN. Everywhere in my body. This all started in March this year (2013.). I also have very bad headaches/head pressure. It's made me very depressed and hopeless as it seems to get worse, but I agree it is much worse with depression, anxiety, and stress.

I hope there is some recovery for this. I am a young mother of two babies and and struggling to take care of them over pain.

Jesse M 06-11-2013 01:44 PM

I had taken Metronidazole (Flagyl) for about a week an entire year before, I took Cipro for a Diverticulitis infection. That might have added to me getting PN, when, a full year later, I took the Cipro. However, I don't believe this is true, as a primary cause -- it was most likely the mix of Clonazepam (a Benzo-drug like Xanax) and Naproxin (Ibuprofen or Aleive) that made the CNS PN worse.

For you, personally, I suggest you keep in mind that you WILL heal. It will take time and you have to be strong for yourself and your family. Don't expect people to understand your pain, either - because this is an "Invisible affliction" people often don't understand. Just do things that keep your mind off of the pain.

I strongly urge you to keep a daily journal, where you can track your healing progress. If not a journal, make a small note on a calendar each day, to gauge how you feel. I do both. When I'm feeling down from pains, I look back at that journal and see that without a doubt, I AM healing -you should do the same; I'm sure you'll see what I mean.

Now, here's some really great news for you: Most people suffering from PN caused by Flagly DO heal, and they do so much faster than those from fluoroquinolones drugs. I got this information from a doctor at the Chicago Center for Peripheral Neuropathy. I pasted the link to that site below.

Also, only recently, I started to take a vitamin called Acetyl-L-carnitine. After around 2 months of taking this, I must admit that I am feeling quite a bit better, with a huge reduction in pains. This is probably due to it's proven effectiveness in regenerating nerve cells and more so, its analgesic effects to stop you from feeling as much pain.

I do not know if it will work for you, but it's something you should research for yourself. ...May God bless you with well health.:)

Link below (Chicago Center fo PN)
http://peripheralneuropathycenter.uc...ic/drugs.shtml

NyBabyMama 06-12-2013 03:41 PM

Thanks for that. I'm just nervous because I think the flagyl set off something. I now have autonomic dysfunction too! (Started 3 weeks ago) I'm wearing a holter heart rate monitor now from my dr. They are saying it might have been a double attack now as I had a virus first, then a drug like flagyl. My heart is now painful, slow (or fast) and doing flipflops, and I'm having a hard time breathing. Also I'm constipated for a month. This is on top of every area of my skin burning or tingling. This is a nightmare. I hope my body can clean this mess up!


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