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Old 01-15-2016, 08:59 AM #11
Patrick Winter Patrick Winter is offline
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DallasGuy,

If i could just give some small advice. This isn't a one size fits all sickness. Unfortunately, you have to see what works for you. Everyone is different. I tried pointing out things that i thought were more general. the white carbs seem to be an issue for everyone because they are evil for our cellular makeup and directly irritate nerves. There are many other things though that some people have no problem with and some who can't bear them. i know people who have neuropathy and are able to basically eat whatever they want. They are also pretty drugged up. I dont wanna be drugged up so I can eat ice cream every other day. i can live without it. Oddly enough you will see that when you eat in a way that your body reacts well to, your labwork will usually reflect it. Once I made significant changes i saw shocking improvement in my bloodwork.

I finally got a diagnosis 8 months ago. In my case I stopped taking a statin and my symptoms stopped progressing (A statin which i really didn't need anyway because cholesterol is not as evil as we have been taught but that's another story). So, for me i have damaged small fibers but no other progressive nerve issues. So, my way of eating was a learning process, trial and error and it evolves every day. I try new things now and then and learn what i can or cannot do. In my opinion, that's what you will likely have to do as well. Some folks have to eat a certain way becuase its diabetes induced, some alcohol induced, some toxic, medication induced.... There are so many possibilites.
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Old 01-15-2016, 09:20 AM #12
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Some people become allergic or intolerant of eggs. This is because eggs were a foundation for the manufacture of vaccines.

Also an uncommon condition called hereditary angioedema can be triggered by eggs (and also fresh fruit).
So far I can tolerate some fruits a little bit (apples and pears are out), and a few eggs/week. I was newly diagnosed with this late in life, after a common blood pressure drug, lisinopril, gave me a serious angioedema spell.

Coffee and tea have caffeine...but also tannins which are acidic.
They also trigger serotonin in the GI tract and some people are sensitive to this. Serotonin will increase gastric and intestinal motility.

When changing your food to a new style of eating, be patient. It takes time for you to learn and implement eating a new way.

The food enhancer MSG will stimulate the NMDA pain receptors, and so will Nutrasweet which has aspartate in it. This is why people with nerve pain should avoid them in processed foods.

Since you have recently had a spell of pain, I'd pay attention to what you crave now, and what you did on a daily basis, and what you ate each day to see if anything sticks out. The way many food intolerances work, is that they make you crave what is actually causing you problems. Reaching for that hot sauce or tomato based food all the time, alcohol, sodas, orange juice gluttony, candy bars...etc, are hints to avoid for a while.

What others eat or can tolerate, doesn't really pertain to you. Your reality may be that you have a virus infection, which will remit in time, leaving you in better shape. So the diet changes at this point are only for future maintenance, etc.

Also tramadol may not be effective at 12.5mg. 25mg does work for me. Tramadol is not instantly effective either. It has to be activated by the liver to its metabolite which is what is actually working for pain. So taking it may need 2 to 3 hrs to see any effectiveness. People taking high doses of it regularly, reach a steady state and do not notice this delay.
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Old 01-15-2016, 11:05 AM #13
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Default Hi DallasGuy!

I'd try to keep this as simple as possible so you don't drive yourself crazy right now. Stress is a big factor in this disease.

I think Ken in Texas had an easy to remember suggestion to not eat anything white except cauliflower. That would cut out white bread and flour, pasta, white rice, white sugar, etc., all which convert quickly to sugar and have 0 nutritional value. You could then add some more commonly shared triggers like tomato and tomato based sauce, spicy foods and sauces, MSG, coffee and alcohol. I'd add to the list caffeinated tea, all sodas, and artificial sweeteners. And finally, be careful with too much fast food. Even their salads have a ridiculous amount of salt.

I wish there was a one size fits all diet plan but it just doesn't work like that. Please remember that my thoughts on what I'd do might not be right for you. You'll figure out what works best for you but it will take some time. If you have more questions feel free to PM me and I'll do my best to answer them.

Quote:
Originally Posted by DallasGuy View Post

How long have you had PN and where and how bad, and how much better or worse is it now, if you don't mind me asking? Were you able to eat more things as you have come along or something?
I have had symptoms for 11 months. Not as bad as many. The worst at evening/night. They started off with twitching in legs, heaviness in legs, burning in legs, arms and hands, pins and needles same places, stabbing random pains and fasciculations in random places. BTW my hands and feet have always been cold and now if I take something like inbuprofen my entire body gets cold. (I just read your intro post.) My symptoms are much improved. I still have burning but it's usually mild. However the twitches have come back much reduced but still disrupt my sleep. Now I can eat more things without being triggered.

Quote:
Originally Posted by DallasGuy View Post
What do you mean by "AND 1 cup of Joe in the morning with 1/2 & 1/2 AFTER breakfast to negate the burn!" So after you eat it the food helps or something?
Yes, drinking coffee on an empty stomach causes me problems. I have found I can get away with 1 cup if I have my coffee after a healthy breakfast.

Quote:
Originally Posted by DallasGuy View Post
Some PN suffers I think mentioned not eating tomatoes? Does that sound right or did I just think that up for some weird reason?
Yes it sounds right. I can have a few slices without any problems now. I wouldn't start off eating tomatoes and definitely not tomato sauce.

Quote:
Originally Posted by DallasGuy View Post
Does butter upset your PN? Does fat in general?
No. None of the fats I listed upset my symptoms. I can't say about other fats. (I don't eat anything deep fried.)

Quote:
Originally Posted by DallasGuy View Post
You said "I also am limiting eggs and nuts right now" Why? Does that hurt you, or other PN suffers?
I have allergies to a number of things. Eggs and nuts can cause problems so I'm being cautious.

Quote:
Originally Posted by DallasGuy View Post
How do you handle eating when not at home?
I have plenty of foods I can eat so it is not a problem in most restaurants. Even Italian restaurants have fish or meat on the menu. Since I don't have a gluten problem I can have a sandwich on whole grain bread. I just don't make it a habit.
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Old 01-15-2016, 01:07 PM #14
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Hi. Thanks everyone for your great responses. Much appreciated.

I hope I'm not coming across as pushy. I reread every one of my posts many times before submitting so that they can hopefully be read as positive as possible.

The only reason I was pushing to know what others are eating specifically was to give me a base to work with. If ten people say they are on ten different diets, like zone, or paleo, or meditranian, ect, then now I have to try and learn ten different diet plans and compare them. And obviously that isn't going to help me out this week, and I do need help. I'm basically just eating the exact same thing each day, and all together that is well under 1000 calories a day. In fact the only time I ate something really different was yesterday, and yesterday was horrible.

I'm just desperate because every day my weight is going down and that is having a bad effect on my body right now, as well as my mind. This thing has come on so quickly on me. I was completely fine a month ago, and now I'm in hell, and so if I can try and figure a few things out like what to eat, that would be a big plus for me. Pretty quickly I'm going to be down 20 pounds since Jan 1st. I'm not trying to be pushy, I'm just trying to figure out what I can eat, so that I can eat.

Anyway, I hope people can believe that if nothing else, I am very appreciative of everyone's help and mean no offense. Thank you to all of you who have responded to me.

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Old 01-15-2016, 01:31 PM #15
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You need to eat more calories per day. You should be at least at 2000 a day for male. Starving is not good for you as you cannot get nutrients to repair yourself. Get some breakfast steaks, or chicken breasts to bake or broil, and frozen veggies.
Birdseye makes several nice simple mixtures, without sauces (which may have MSG in them), for you to start with.

Your goal now is just to find your trigger. Usually PNers find that something in their daily life has pushed them into this malady.
Something they do (like straining themselves with too much or too many extreme forms of exercise), exposure to toxins in solvents or the air, too many vaccines, viral and/or bacterial infections, alcohol, diabetes, kidney disease, hepatitis, food allergies or intolerances, thyroid derangements, ---there are so many possibilities.

Right now it is not difficult to find foods. You can eat in moderation (unless you find yourself gluten intolerant) some breads. Starving yourself for some "diet" seems too radical for a beginner. You can start by eating 1/2 the bread you would normally eat. Then pare that down week by week as you get used to less.

Keeping a journal would be helpful as you can look back to what you ate yesterday and the day before to track your symptoms or improvements. Pace yourself, and make changes over the next weeks. It is too difficult to jump in and try to make sense of what will work for you.

This link may help you alot. I have this book, and found it very sensible and intriguing.
http://obesitysanswer.com/

While it targets overweight people, it explains how food intolerances make you sick, make you overweight and unhealthy. It explains the food groups that are the biggest culprits. example: The Lily Family (onions and garlic), The Nightshades (all peppers --hot and not--, paprika, tomatoes, potatoes, eggplant)
Dairy, gluten, chocolate are the most common to try eliminating one by one (and reintroducing), to see if they disagree with you.

Over time people can discover what bothers them and fix that.
I bought my copy years ago at Amazon...it is a trade paperback and not expensive. Sometimes you can use the used book feature and save alot of money on Amazon.
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Last edited by mrsD; 01-15-2016 at 01:48 PM.
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Old 01-15-2016, 01:40 PM #16
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I love lentils. I could eat them for every meal. Red lentils, green lentils, brown lentils, lentil soup, whole lentils- I could seriously go Bubba Gump on lentils. I may go almost exclusively lentil for a week or two as I have allowed some trashy foods to enter my diet. Some of those white foods mentioned.

Cauliflower is a staple too, when not in a blighted state. It has been expensive here. We roast it with olive oil and salt. Delicious.

I eat small meals. I hate feeling full and my system doesn't tolerate it well. I eat a lot of nuts for protein as well as hummus. I love hummus.

I would suggest eliminating the usual suspects- tomatoes and other nightshades, though I do not have problems with them myself thankfully.

Wishing you the best,

Jon
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Old 01-15-2016, 01:49 PM #17
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Quote:
Originally Posted by DallasGuy View Post
Hi. Thanks everyone for your great responses. Much appreciated.

I hope I'm not coming across as pushy. I reread every one of my posts many times before submitting so that they can hopefully be read as positive as possible.

The only reason I was pushing to know what others are eating specifically was to give me a base to work with. If ten people say they are on ten different diets, like zone, or paleo, or meditranian, ect, then now I have to try and learn ten different diet plans and compare them. And obviously that isn't going to help me out this week, and I do need help. I'm basically just eating the exact same thing each day, and all together that is well under 1000 calories a day. In fact the only time I ate something really different was yesterday, and yesterday was horrible.

I'm just desperate because every day my weight is going down and that is having a bad effect on my body right now, as well as my mind. This thing has come on so quickly on me. I was completely fine a month ago, and now I'm in hell, and so if I can try and figure a few things out like what to eat, that would be a big plus for me. Pretty quickly I'm going to be down 20 pounds since Jan 1st. I'm not trying to be pushy, I'm just trying to figure out what I can eat, so that I can eat.

Anyway, I hope people can believe that if nothing else, I am very appreciative of everyone's help and mean no offense. Thank you to all of you who have responded to me.

I used to tell newbies to search and read for Mitochondrial health. We don't know how heavy you were to start. I lost 60 lbs and went to using a walker. I had muscle wasting and was trying to lose weight at the same time. At one point in time I was convinced that Potatoe Salad was poisonous to me. I have tried it now after 2.5 yrs and can tolerate it fine now. So the hard and fast rules change with symptoms and the symptoms change with passage of time. Myself, I gained back the 60 lbs and started free walking as my legs got better. I still avoid carbs and Alcohol as I feel that one if inflamatory and the other is a poison. Some only discover their diets by trial and error. I listened to Mrs.D and discovered that Nightshade veggies don't bother me. If I eat out, I go where a protein and two veggies make the plate. If I have to cheat worse than that, grilled chicken on wheat. I had trauma induced Neuropathy. A car accident that I walked away from but the Diabetes made the Neuropathy jump on me with both feet. Now I feel that if I get any better it will be from nerve regrowth to facilitate stronger legs. So, it might still be worth studying about Mitochondrial health. I will search your posts to se if you have told us your b-12 number. Good Luck, Ken in Texas.
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Old 01-16-2016, 12:02 AM #18
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My b12 test came back at 450, but that might be high as I had been trying to take some b12 in the few days before, but not anything high potency. I had been off the PPI's and tums for a while when that was taken, and I firmly believe that, those things more then anything might have been my downfall if this is some kind of vitamin deficiency thing.
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Old 01-16-2016, 08:50 AM #19
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Quote:
Originally Posted by DallasGuy View Post
I'm basically just eating the exact same thing each day, and all together that is well under 1000 calories a day. In fact the only time I ate something really different was yesterday, and yesterday was horrible.

I'm just desperate because every day my weight is going down and that is having a bad effect on my body right now, as well as my mind. This thing has come on so quickly on me. I was completely fine a month ago, and now I'm in hell, and so if I can try and figure a few things out like what to eat, that would be a big plus for me. Pretty quickly I'm going to be down 20 pounds since Jan 1st. I'm not trying to be pushy, I'm just trying to figure out what I can eat, so that I can eat.

Maybe tell what you are eating now & how you are cooking it, then we can make suggestions from that starting point.
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Old 01-18-2016, 05:11 PM #20
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Specifically, everything, except things that don't agree with me (beans in large-ish amounts) and things I don't like (lamb and sheep products),

I do not have Celiac's, only allergic to lamb and sheep products,, and am pretty lazy these days when it comes to doing much 'cooking'.

Everyone seems to be on some food or another avoidance plan.

What i eat isn't important except that i don't eat too much.

And sugar and flour set up cravings, in me...alas....so i do my best to avoid them

Best of luck!

Hugs, ElaineD
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