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Old 03-05-2012, 11:15 AM #1
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Welcome to NeuroTalk:

If your R-lipoic is not the "stabilized" form (it will say NaRALA on the label, even on empty stomach, it may not be absorbed.

The newer form NaRALA is far superior for absorption and is relatively new. Doctor's Best is one form.

100mg a day of that may be all you need.

What comes to mind reading your introduction is gluten intolerance. This can make for some VERY itchy rashes!
It can also lead to neuropathy, and other nutrient deficiencies due to malabsorption in the intestine.
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Old 03-05-2012, 05:32 PM #2
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Yes, stop eating gluten. Most people do that with my illnesses, CFS and POTS (autonomic neuropathy) and other problems. Good place to start.

I use two diff. Alpha Lipoic Acid supplements and they are great. But when I added Benfotiamine (a fat and water soluble vit b1 ) things got better fast. I am improving daily. You can try adding Benfotiamine. I use the Life Extention brand. My doctor likes that one.

My Alpha Lipoic Acids are Lipoic Acid Supreme and also a long acting one ALAMAX by Xymogen. That was is really good.

You need lots of antioxidents, LOW sugar/carbs in food and staying away from toxins when possible. The nerves have to heal and are sensitive. You might like the book "Minding my Mitochondria." The doctor talks about how to heal the nerves. I also eat sea veggies, important for nerves. Really great book. You can find Dr. Terry Wahl's on Facebook and on the internet.
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Old 03-09-2012, 12:11 PM #3
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Quote:
Originally Posted by Sallysblooms View Post
Yes, stop eating gluten. Most people do that with my illnesses, CFS and POTS (autonomic neuropathy) and other problems. Good place to start.

I use two diff. Alpha Lipoic Acid supplements and they are great. But when I added Benfotiamine (a fat and water soluble vit b1 ) things got better fast. I am improving daily. You can try adding Benfotiamine. I use the Life Extention brand. My doctor likes that one.

My Alpha Lipoic Acids are Lipoic Acid Supreme and also a long acting one ALAMAX by Xymogen. That was is really good.

You need lots of antioxidents, LOW sugar/carbs in food and staying away from toxins when possible. The nerves have to heal and are sensitive. You might like the book "Minding my Mitochondria." The doctor talks about how to heal the nerves. I also eat sea veggies, important for nerves. Really great book. You can find Dr. Terry Wahl's on Facebook and on the internet.
Hi Sally,
Thank you for the information on gluten. I hope this is not my imagination but today the burning is not half as bad. I did not eat any foods containing gluten yesterday or this morning. As soon as I get back home in April I will make an appointment and mention this to my doctor I will also mention to her about finding out if I am low in any other supplements. I think taking the B-12, B-1, R-ALA on an empty stomach has greatly helped. I am not cured yet by no means but Thank God it is getting better. The only good thing that has come out of having PN is a stronger relationship with the Lord. I keep praying and keeping the faith. God Bless all!

Wanda
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Old 03-09-2012, 03:45 PM #4
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There are other supplements that help also. Fish oil, Benfotiamine for sure. That is a form of Vit. B1 that is fat and water soluble. That is better than B1. I take many supplements for nerve growth and heath. Liposomal Glutathion, and all antioxidents keep the nerves healthy, taking toxins away.

I hope being off of gluten will help. Keeping my sugar low is also important. Too much sugar is hard on the nerves just like the brain.

I hope your doctor understands supplements and food and how they help. If not you can find someone that does. Integrative, complementary MD's are good.

Our nerves heal and repair SLOWLY so learn all you can and be patient. It is wonderful we can do things to heal.

God has been with with me through all of my problems. CFS and now I am dealing with POTS. I have improved greatly with my Autonomic Neuropathy. Supplements and the right foods are what helped. I always know He is with me and helps me greatly.
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Old 03-07-2012, 10:35 PM #5
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Quote:
Originally Posted by mrsD View Post
Welcome to NeuroTalk:

If your R-lipoic is not the "stabilized" form (it will say NaRALA on the label, even on empty stomach, it may not be absorbed.

The newer form NaRALA is far superior for absorption and is relatively new. Doctor's Best is one form.

100mg a day of that may be all you need.

What comes to mind reading your introduction is gluten intolerance. This can make for some VERY itchy rashes!
It can also lead to neuropathy, and other nutrient deficiencies due to malabsorption in the intestine.
I maybe going about trying to treat the neuropathy wrong. I was doing somewhat better in the last few days but today and yesterday the burning in my feet increased. When I started taking r-ala my hair became ultra dry and lots of breakage I started taking biotin to counter the r-ala because it started after I started with the formula pills I take. Can high amounts of biotin cause neuropathy? I also take Ibuprofen for the pain, I try not to take more than 4 a day. Does it cause neuropathy? I drink alot of water and try to stay away from diet sodas, I was drinking quite a bit but now I'am down to 1/2 a can a day. I weigh 120, I never smoke and I quite drinking 9 months ago. I try to eat healthy and try not to eat more than 220 carbs a day. I eat yogurt, cereals, berries, nuts chicken, fish, lean pork chops lots of greens, squash, some beans, cabbage,some potatoes. I have noticed that if I eat sweets it seems that my symptoms are worse. I try to stay away from sweets. Thank goodness my rashes are gone. Do I need to take the glucose intolerance test even though my doctor took blood twice and checked for diabetes and thyroid problems. My doctor said all my numbers were good and come back in a year. I would like to take the other supplements that you suggest I found the list but I couldn't find the amounts.
I will keep looking, there is so much to absorb in just a little bit of time since I have been a member. Thanks you again, Wanda
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Old 03-07-2012, 11:40 PM #6
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If you knew your A1C that would help decide about a long GTT test.

Gluten is in wheat and rye products. It can cause burning.

Another dietary thing I found for myself was potatoes. (and some tomato products). Solanine in potatoes, seems to be difficult
for some people to tolerate. The burning can happen a day or two after eating a potato product. So it is hard to pin down.

But nightshade veggies are difficult for some people. You can go on an elimination diet and not eat any peppers/potatoes/tomatoes for a month, then reintroduce one here and there and see if your burning goes away, then returns.

Also burning seems to be worse when the tempertures go up seasonally.

Have you had testing for B12 and Vit D levels? Those are often low in many people, and it helps to fix them ASAP. Then you can decide about other things.

I am not aware of high biotin affecting neuropathy. Biotin is a factor that helps mitochondria work better.

Here is a monograph on Biotin.
http://lpi.oregonstate.edu/infocenter/vitamins/biotin/
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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