newbie
 

Hi,
My Name is Wanda, I'am 48 I have a wonderful husband who is quite older than I and two great daughters. I'am very blessed to have such a wonderful family! My story started about 4 years ago. I went to my local physician and was told I had high blood pressure, after three readings of 170 over 90 she put me on Metoprolol tartrate 80mgs twice daily. I had also developed a rash on both arms that itched me almost to death. I ended up going to 5 allergist and was told by all we can run expensive tests and we can tell you what it is not but we can not tell you what it is caused by. During these past few years I have had multiple cortizone shots and prednisone pills. Well the rash has been gone now for about 8 months, thank God because I don't think I could take Neuropathy and the rash at the same time!!! During these past 4 years I noticed painful feet from my toes to midway down my feet. I thought that was from an old hiking injury about 5 years ago where I lost both big toe nails on my feet. The pain over years has gotten worse so thats when I decided to see a foot doctor. He did x-rays and said you have neuropathy handed me a booklet and made an appointment for me to see a neurologist. Well I went home shocked, I went on the internet and found two different sites for treatment of neuropathy as I have little faith in doctors. I started taking one of the formulas which contains B1, B12 and R-Alpha Lipoic Acid. I also take an extra two tablets of R-Alpha Lipoic Acid to help with the pain. I took this for the last three and a half months and could not understand why I seemed to be getting worse. Thank God I found your website that instructs you to take the supplements on an empty stomach. I was taking it with meals. I now take it on an empty stomach. Its been about a week and a half and I can walk better and the pain is not as great at least I'am not crying every day. Thank you so much for the information you provided me and others. I know you list other supplements and how much to take, where can I go and find this information. I know, another newbie but I feel this information is a lifeline! Thank you very much,
Wanda

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.

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 Wanda
 

Welcome to Neuro Talk. I am glad you found some helpful information. That is what I did when I came across this site too. I just never left. I made alot of friends the last couple of years too. Glad you found us, and again a warm welcome. ginnie :)

Thank you mrs.D!
 

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

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/

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

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.