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Old 01-13-2013, 05:57 PM #11
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Many of us can heal. Those with hereditary CMT, cannot.
I do not think I have CMT, so Im assuming all my bloodwork Dxlabs results are correct. Neurol is sayin its "idopathic" I am otherwise healthy.
I know I have to be patient and let vits and supplemets do there job.

Mrs D, you said your take Biotin 10 mgs at night. I ordered Biotin as you suggested. I just have one small concern. I looked up Biotin and it says adults should only take 30mcg a day. Do you think its safe to take 10mgs? , seems like its a big diff in dosage.
Btw do you notice a diff in your hair , says its supposed to be good for hair and nails.

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Old 01-13-2013, 06:24 PM #12
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I have a biotin thread here:
http://neurotalk.psychcentral.com/sh...&postcount=166

Those not taking lipoic acid may not need biotin in high doses.

But those with lost of taste/smell, may benefit.

The biotin mixed in with lipoic acid is not likely to work, since the lipoic acid will fill the transporter and make the biotin less available.

It is not a critical thing for PNers...but some may benefit from it. The research on biotin is slim compared to other supplements, but it appears at this time to be pretty benign.
I don't get any side effects from mine. I take it at night, before bed.



Quote:
Originally Posted by Marie33 View Post
I do not think I have CMT, so Im assuming all my bloodwork Dxlabs results are correct. Neurol is sayin its "idopathic" I am otherwise healthy.
I know I have to be patient and let vits and supplemets do there job.

Mrs D, you said your take Biotin 10 mgs at night. I ordered Biotin as you suggested. I just have one small concern. I looked up Biotin and it says adults should only take 30mcg a day. Do you think its safe to take 10mgs? , seems like its a big diff in dosage.
Btw do you notice a diff in your hair , says its supposed to be good for hair and nails.
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Old 01-13-2013, 09:39 PM #13
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Sounds good to me what you are trying.

Fish will provide some Omega-3s too which our nerves need to repair.

I personally don't have problems with meat. But I do get really tired of chicken.

Keep us in the loop with your progress. Eating simple, whole foods like you are doing is best, always.

Don't forget some type of beans, Edamame are good and so are black (easy to digest). They provide magnesium and so does that dark chocolate you have!
Hi Mrs D, Makes me feel better that you agree with what I am doing. Before you had recommended grape seed I brought it an never took it. Is it possible to open the capsules and put it in my afternoon drink? Does it change the potency? Also, I can remember why you recommended it? Thanks
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Old 01-13-2013, 09:47 PM #14
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For me, I would not get rid of meat, it doesn't cause me any problems. It is the carbs that I got rid of because the carbs make my pn worse.

Have you tried eliminating carbs first?

Have you tried taking Benfotiamine? It's a life saver for me.
Hi Stacey, What type of carbs have you illiminated? I really don't eat very many. Mrs. D recommended trying gluten free and I started that about 6 months ago. That did not help my PN but boy does my stomach feel so much better. I had problems with it for as long as I can remember. Actually what is Benfotiamine?
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Old 01-13-2013, 10:00 PM #15
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Hi I also have SFN Idiopathic.ugh! no cause for me yet, anyway.
Its good to read you and many others write "heal" . Do you truly believe we can heal? Sorry im just overwhelmed and depressed. I can not for the life of me understand where this "horrible painful illness" came from. I was always healthy and active until one day 2 yrs ago I started having pins and needles in my legs and burning feet at night, its been down hill from there, its all over now.
Im taking many supplemets , even tryed metanx for 2 mos still have many pain symtoms. Tryn lyrica now, can not get past 50mgs once a day, side effects are harsh. I'm feel so hopeless. Any suggestions would be greatly appreciated . Thanks..
Hi Marie,
My SFN started just like yours, out of the blue. I thought I was exceptionally healthy. I tried to eat well and exercised 4-6 times a week. I keep looking but I don't know if they will ever find a cause. I agree with Stacey. I am trying to take control of my health. Doctors can be great and caring but they can only go so far. I have a really hard time taking meds. Try not to be too stressed. My neuropathy gets so much worse when I am. I find that since I have started to be healthy I fell better emotionally. At least I feel I am part of the process in my care. Did you started feeling worse emotionally after you started the Lyrica? I couldn't take it because it caused me to be very depressed and I am not usually. It is not like that for everyone though. Many people find it works great. Keep asking questions. There are some really great people here that are willing to help and have great suggestions.
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Old 01-13-2013, 10:08 PM #16
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I'm not sure why you are eliminating meat, but not other animals, like fish.
Personally, I have not eaten dead animals for over 35 years, and feel much better for it; for me, it is largely an ethical issue. There are, of course, health issues, as well. For years, my brother has made fun of my vegetarianism; I refrain from commenting on his open heart surgery, stent insertion, etc. I prefer my way.

I have been fairly overweight for years, and have recently dropped 50 lbs by eliminating all gluten from my diet. I recently learned about my gluten intolerance, and the damage it has done to my body, including the destruction of my peripheral nerves. While I'll be the first to say that It is damned inconvenient to be a gluten-free vegetarian, I am convinced that it's right for me. It does take a lot of effort in food preparation, as well as research for proper nutrition. I do consume dairy, and take a great deal of B12, glutathione, etc.

The weight gain you mentioned may be caused by many things, including medication. Be careful about consuming too much fructose; a diet high in fruit may not work for you.

Good luck in your quest.
Hi Steven, I forgot to mention I have been gluten free for about 6 months. I am keeping fish in because I am not ready to give up everything and I figure fish is the best to keep. Do you know which fruits are high in fructose? Thanks!
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Old 01-13-2013, 11:04 PM #17
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I got rid of all the simple carbs and will only eat complex carbs.

Simple carbs: all white flour and anything with white flour in it, including pasta, ALL sugar, all the junk food basically.

Complex carb: I will eat high fiber food, I take flax seed, and flax seed product.

Truthfully, I have given up bread pretty much completely. I will eat low carb fagita's instead of bread.

I personally only drink water, nothing else.

I keep my carb intake at 30g a day, give or take.

I will splurge ounce in awhile but not much and if I do, I am reminded right away why I don't. Friday night husband brought home chinese chashew chicken, comes with brown rice. I over did it. Usually I skip the brown rice or eat very little but I was bad and ate it all. I paid in spades that night. My feet burned so bad and NOTHING would help it. Ya. Not cheating again for awhile.
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Old 01-13-2013, 11:12 PM #18
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Hi Mrs D, Makes me feel better that you agree with what I am doing. Before you had recommended grape seed I brought it an never took it. Is it possible to open the capsules and put it in my afternoon drink? Does it change the potency? Also, I can remember why you recommended it? Thanks
Grapeseed extract is an antioxidant free radical scavenger and
is good for inflammation and allergies.

Some of the people over the years at RSD use/used it with some success.

Why open the capsules? It might not taste too good...
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Old 01-13-2013, 11:15 PM #19
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Apple and pears have the highest fructose of all fruits.

http://en.wikipedia.org/wiki/Fructose_malabsorption
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Old 01-13-2013, 11:36 PM #20
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I didn't wanna say this cuz it causes some people to say i should not eliminate a whole food group, but...I don't eat fruit. At least not now. If I do, in the summer I will occasionally eat berries, strawberry or blueberry.
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