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Old 09-23-2013, 01:49 PM #71
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Quote:
Originally Posted by TAOBOISE View Post
the idea is to reduce inflammation in the body which reduces pain and allows for healing. Since I didn't know what specifically caused inflammation for me, I cut out everything that possibly could and will slowly add foods back down the road.
This is also the idea behind the Specific Carbohydrate Diet (SCD) for bowel maladies (CD, UC, IBS, coeliac, etc).

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Old 09-23-2013, 01:54 PM #72
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And, of course this does not work for CMTers as CMT is inherited. Probably fine for someone who does not have an inherited neuropathy.
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Old 09-23-2013, 07:43 PM #73
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Thank you for your comments. My peripheral neuropathy was very intense after my initial reaction to Ciprofloxacin this July. Although it is much improved through diet and lifestyle changes, it's hard to say if the damage is temporary or permanent. I am not very familiar with other forms and causes of neuropathy, so my suggestions are definitely more related to quinolone induced neuropathy.
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Old 07-23-2015, 09:21 PM #74
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Where are you now Jesse M? I realize this is an old thread. It's now 2 years later. I am just wondering If you had any improvement in your PN?
Thanks!!!
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Old 07-24-2015, 08:41 AM #75
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I may possible have just figured out where my idiopathic PN came from!! I have recently been reading about long term use of Ambien causing Peripheral Neuropathy. It is listed as a side effect under Central and Peripheral Nervous System. Now, thanks to this post I am reading about the relationship between some antibiotics and PN.

I have used Ambien for years as prescribed by my doctor. I have taken it continuously since January due to many horrible events in my life . I stopped a week ago after reading about it and my symptoms are starting to lessen. I do not want to get too excited because every time I think I've figured something out my symptoms start up again and I'm back to square one.....

Then I remembered my pulmonary doctor put me on azithromycin 250 mg a day for 2 months May and June. I don't know if this effected me as I was already having symtoms but I doubt it was helpful. Also this antibiotic is not on the list of ones with PN side effects but at this point I don't have a lot of trust in Pharmaceutical companies.

I am definitely going to look into Benfotiamine and make my standard liver tonic (Beet Kvass if any of you are interested let me know and I'll explain further.)

Thank you!!!
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Old 07-30-2015, 02:52 PM #76
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Quote:
Originally Posted by Jesse M View Post
...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.

...
As a PN sufferer fron dapsone i agree with you that alcohol is a trigger for iritating the nerves i have expereinced that a couple of times.

When i first got this i found a capucturist with a background in neuroligy and he adviced me to take Alpha lipioc acid&Acetyl L-Carnitine and borage oil.
Its a different aproach then what you have taken.

So why take these vitamines?What reseaurch have you done to support this approach?I am very curouis.

I am now 6 years into this PN thing.
If i mountain bike 35 km i will get a very nasty flare-up for about a week where i dont like my feet.
The same goes for doing squats so i am really limited at this moment which is a big frustration.
My PN developt a completly diverrently,in my case it developt very slowly and got wurse over time.I dodnt experience the pain that goes with dying nerves.
What is very uncomfortable are the flare-ups mostly after a sport activity,somethimes if i really feel good even the numbness is less dominant.
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Old 07-30-2015, 07:19 PM #77
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Quote:
Originally Posted by SU30boy View Post
Where are you now Jesse M? I realize this is an old thread. It's now 2 years later. I am just wondering If you had any improvement in your PN?
Thanks!!!
Hi SU30boy,

JesseM has not been around to Post for about 20 months. Perhaps you would like to expand on your Post so current Members can address you personally.

Welcome to the Community.

Dave.
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Old 08-01-2015, 08:32 PM #78
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Quote:
Originally Posted by EnglishDave View Post
Hi SU30boy,

JesseM has not been around to Post for about 20 months. Perhaps you would like to expand on your Post so current Members can address you personally.

Welcome to the Community.

Dave.
Hi English Dave. I started getting PN symptoms about 3 1'2 months ago at the tail end of taking a long course of Cipro. It is the most likely cause as the other causes have been ruled out, according to my neurologist. I had read JesseM's post about his experience with a Fleuroquinolone antibiotic as a cause and was wondering, hoping, in fact, that he did indeed get better to the extent that he hoped. So as to give me some hope as well.
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Old 08-01-2015, 08:59 PM #79
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Hello and welcome to the NeuroTalk Support Groups.

A good way to find more posts regarding Fluoroquinolone or Fluoroquinolones, is to use the forum search feature. I'll leave the link below. There is no need to put in a username but check for posts on the Peripheral Neuropathy Forum. I just did that myself and found a number of posts that may be of help to you. Unfortunately you would need to do your own search as my page filled with search results will not copy over.

http://neurotalk.psychcentral.com/search.php

p.s. There are also some in the
PN Tips, Resources, Supplements & Other Treatments sub-forum
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