If you can find a causal factor for your PN such as diabetes or alcohol at least that gives a person something to keep under control. I don't remember any kind of situation where a person could say that they were fortunate because they this kind or that kind of PN. The parameters for symptoms however are wide open. Some suffer terribly and others are just aggravated that they have something that they cannot fix. I hope that your symptoms are not too bad and that it wasn't too hard to get off the beer. I have friends that have absolutely no power over alcohol and will become violent at even the conversation about getting help. This is the reason that I hate alcohol and have much respect for anyone strong enough to fight it. We all struggle to eat for nutrition and understand what out body needs to heal or at least stop the damage. You need to know what your b-12 number is because I felt a bit better after I got mine up toward 1000. Also if you experience tender and burning skin on your feet, Mortons Epsom Salt Lotion helped me to use bedsheets again. Good Luck, Ken in Texas.

Thank you kindly for your response, Ken.

I am trying my best to fix things, but not knowing the cause is difficult. What I've noticed is that those with alcohol induced neuropathy have the involvement of larger nerves and more of a length dependent neuropathy, whereas mine is purely small fiber and non-length dependent, so all over the body. That makes me wonder. The neuro suspects autoimmune. Of course, it could be a combination of things and physicians in particular are prone to forgetting that the body is a whole, a complete and interrelated organism.

I thankfully don't have much pain, very little compared to others, but itching, tingling, some numbness, twitching and spams all over. I also have shaking down one side of my body. The autonomic symptons are the most worrisome perhaps. That's just to give you an idea.

No, it wasn't difficult to stop drinking. I miss it and will miss it, since I was big into craft beer culture, but that means nothing compared to my health. The doctors didn't even ask me to stop, but as soon as I read about alcoholic neuropathy, I immediately didn't touch another drop of alcohol. I don't want to risk it and even if I go into complete remission, I'm not sure I ever will again.

I have a very strict ketogenic diet and use various supplements, B12 coming up, just started D3 and K2, and only this has give me relief from when I was very horrible in the summer. However naive it may be, I want remission and am willing and able to do whatever is necessary. So not touching sugar, carbs, alcohol, and many other things is easy for me, even if not being to have a single meal that I didn't prepare myself makes life somewhat more difficult at times.

Thanks again for your response.

David Hi.

I don't know if you are into juicing (I can't because it's concentrated and diabetics really are not supposed to be juicing their fruits or veggies, or so I have been told). But the lady across the street (and this is a good example of what a healthy lifestyle can do for you.

She's in her early sixties, weighs about 100 lbs (if she weighs even that), she has a Nutra Bullet and she juices every day. She has a mountain bike and she is on that thing every day of her life. At night she wears a hat with a light so we all know she's coming down the block. She was hit by a car a few months ago, knocked off the bike and injured her arm. She came across the street and said "Melody, can you come into my house for a minute, I need that arm of yours for my Nutra Bullet"? I said "sure'. Now I have never used one of those so I had no idea how POWERFUL these things can be.

She had put all green things in the Nutra Bullet and she told me to just turn it once. I said ONCE?" She said 'yeah, just once" I guess I pulsated it for one second. Holy Cow, scared the bejesus out of me. That thing juiced whatever was in that thing in one second. Never saw such a powerful juicer.

She drank it down and she does this every day. She is a tiny person, about 4 feet 11. Hardly any body fat but she's an athletic animal. She goes on caravans in other countries, she rides camels, she TRAVELS.

She really knows how to live and her arm was not broken, only sprained and she's over that due to her going to therapy 3 times a week. Nothing is keeping her off of that bike and her smoothies.

Have you ever tried smoothies? Maybe there is a magical healing connection in one of those. Can't hurt to try.

Melody

Hi Melody,

Thank you for your colorful story. I quite enjoy such stories. She reminds me of my great grandmother, who lived several years past 100, a tiny woman.

Each day I have a smoothie for breakfast, but since I'm on a ketogenic diet, there is no fruit, which I never consume (many studies now show the ill effects of fructose, basically sugar, on the body), but veggies and lots of fat. One example would be coconut oil, avocado, some herbs, and say some spinach and kale, or chard, etc. I often throw in some spices too. It's very nutrient dense.

Since I can't consume eggs and of course grains, the smoothie was the last option. When I could eat nuts, no more on my autoimmune protocol, I used to add some almond butter or just raw nuts of all sorts and some hemp, sunflower or pumpkin seeds. I miss those.

Thanks again for your thoughtful note.

I am a foodie and have studied the diets that PN sufferers have come to call their own. IMO you are better off cooking your own meals but I know that becomes hard to do all the time. I have found several places where I can eat out and still stay somewhat safe. I admire your tenacity but I detected a note of entrapment so that is why I post. I can go to a cafeteria style restaraunt and if I walk slowly around the salads and load up. Then walk fast past the breads and desserts to the proteins and only then slow down. You get my gist and hope you settle into a healthy and comfortable pattern. Ken in Texas.P.S. I forgot the veggies, the bulk of the plate.

Ken, thanks for the kind and encouraging words.

It's not easy for sure, but given the stakes, I'm up for trying this ridiculously restrictive diet for 1 year and trying to heal my gut and possibly push this thing into remission. I'm not sure it's probable though, given everything I'm reading about non length dependent SFN, though it has been known to happen.

Basically, I can't eat so many things that going out is not an option for me. To give you an idea how restrictive my diet is like: I can't eat spices from seeds, fruit, any sugar based sauces (which is practically all the sauces you find on meets out there), certain vinegars, and so on and so forth.

I'm hoping to reintroduce some fruit, very little, handful of berries a week to begin with, very little nuts and seeds and possibly eggs or egg yokes in a year from now, but even then eating out will be very risky. I've had to hold back from eating Christmas dinner out with the in laws and their extended family at a delicious restaurant next week, but I guess I'll have a nice quiet night to myself. It's difficult, but I really have no one to blame but myself for my poor lifestyle choices. Well, maybe it was genetics, but unlikely. Likely, my poor lifestyle for years and years precipitated this.

I'll live though: there is much suffering in this crazy world, and I'm among the most fortunate, I know. But being a foodie like yourself and not being able to indulge at the newest restaurant with my wife, family and friends is not easy.

Thanks again!

90% coacoa candy bars? I snack these as sugar is the 4th or 5th ingredient and it doesn't register on the old glucose meter. Also your symptoms will change over time. At some point you might start a journal and log the day that you tried something "bad" and then wait for 3 or 4 days and see if you have any info to write down. I had an aversion to Potatoe Salad as I would always eat too much and burn for a few days. I have tried it after about a year has gone by and It didn't treat me bad.Good Luck, Ken in Texas.

Thanks, Ken. Glad you can enjoy those treat. Well, let's say cocoa is very high in phytic acid, which is something we can't break down and so is a known irritant for people with gut and/or autoimmune. It's the same reason why I don't consume nuts and seeds among other things. At some point, say a year down the road, perhaps I'll introduce some very limited quantities.

Yes, that's the idea, you're right. I will keep a journal, I've been meaning to, but will for sure soon. And I'll definitely do so when I start to reintroduce things in a year or so. I plan to begin with nightshades, eggs and seeds and nuts, all of which I've excluded right now and for the foreseeable future.

Yeah, not surprised about the potato salad given that it's very high on the glycemic index. But glad you can enjoy some now. I'm hoping once I heel my gut, or hopefully do so, I can enjoy more things. And who knows, perhaps one day I'll be able to have things I don't thing are healthy here and there without a reaction, but I'm not sure I'll ever risk it with things like gluten, dairy and alcohol. We'll see. And thanks again for the encouragement. All the best to you too!

I eat eggs occasionally, but only ones that are from grass fed, free range chickens. I know the owner of an organic farm and have literally met the chickens. I also eat nuts on occasion, but I slow cook them for 24 hours in a warm oven. According to Sally Fallon in a book called "Nourishing Traditions" this makes them more easily digested. It works for me. When you're ready if you need more info PM me. I was on a Paleo Diet but just recently switched to Keto.

Question from a prior post, What do you use for liquid in your vegie smoothie?

Hi Pinkeynose,

If you can handle eggs and nuts, then by all means. Listening to one's body is key as I'm sure you know. Egg whites are problematic, which is why I avoid them. When I do reintroduce eggs after a year, I'll begin with the yokes. Here's a decent idea of the issues: http://www.thepaleomom.com/2012/06/w...ocol-eggs.html. You may already know this and you're just fine with it, and as I mentioned that matters most. Of course, that they're local, and you know the source, is essential. For the first year, I want to avoid any possible irritants, and I can tell you that by reducing my diet to what it is now, it has even calmed me down more. Long chain proteins are just difficult on the gut and I've really done a number on mine for years. Even when I do introduce them, I'll be eating one or two a week, not much more.

As for nuts, there isn't too much good evidence on that method or the one I used, namely, soaking for 7 hours or so, but you find relief from it and so did I, so I think it must reduce the phytic acid. All those traditional cultures and our guts can't be wrong, right? Again, with nuts and seeds, because of the phytic acid, I've decided to take them out for now, for a year. I will say that I was eating lots of them raw and almond butter for months until recently and my SFN and gut were improving, but taking them out entirely has seen my IBS symptoms improve even more and it's very noticeable. I hope I can reintroduce them at some point...looking at my wife take spoons of almond butter in after dinner is not easy!

Every morning I have a veggie smoothie, right. I was using almond milk, but now that I'm fully on the autoimmune protocol, I use water. I know, it's boring, isn't it? I usually throw in a few ice cubes, some water, maybe a little spice, some herbs, maybe mint, an avocado or two, a spoon or two of coconut oil and lots of greens, whether kale, arugula, spinach, chard, etc. If you can handle coconut milk, then use that. If you want to avoid the added processing, throw in some coconut flour and mix it in with the water first. It makes it tasty. In case I have SIBO, I took out the coconut flour - it's high in inulin and as soon as I did, and stopped eating coconut bread, my IBS symptoms improved considerably, making me believe even more so that I do have SIBO. One thing to try and that I've been meaning to, is to add bone broth as the base. I usually just drink up a glass of that separately afterward, but I've been thinking of doing that.

And please feel free to PM me anytime, and I'll be in touch at some point too, I'm sure. Thank you.