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Old 04-05-2020, 03:21 PM #11
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Thank you.
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Old 04-05-2020, 03:29 PM #12
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Hi dcd2103 and Dexter

There are several threads here where R-lipoic acid has been discussed.

You can use the Search option (https://www.neurotalk.org/search.php) to find them; they may be of help to you.
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Old 04-05-2020, 03:39 PM #13
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Thank you. i will look at them all as I am trying to find anything to take the edge off burning up.
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Old 04-06-2020, 07:08 AM #14
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dexter,

you need to figure out if its autoimmune or not. get a full autoimmune workup. if it is, some prednisone may help until your dr can get your approved for IVIG. Please find a good neurologist. where are you located?

I've never noticed alpha lipoic acid to be of any help. in fact, if you have silver fillings, it can be dangerous as its a chelator.

I've had next to no success with supplements. The only things that have helped me are gabapentin, IVIG, diet and exercise. In addition, when i have a very very bad flare, i take a Xanax. Its literally the only thing that will literally "calm the nerves" and give me a nights respite.

I'm looking into spinal cord stimulation as well, this is a treatment thts just just just starting to be considered for SFN, but with some very good results.
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Old 04-06-2020, 10:59 AM #15
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Hi dcd2103, I don't have any fillings so that part should be o.k the big reason for the alpha lipoic acid right now is the oral burning I am having and read a few places it may help but I guess at this point desperation on my mind as it is painful. All my liver functions etc. are normal, It being autoimmune I would think hep c would have fallen into that area,but now cleared. Right now I am seeing a new neurologist so I will go over these types of full work ups with them.
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Old 04-06-2020, 10:06 PM #16
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Quote:
Originally Posted by Dexter454 View Post
Hi dcd2103,nI am not sure what caused my P/N I had hep c that was giving me problems 15 years ago while getting treatment I was diagnosed with P/N the neurologist said hep c caused it and the hep c doctor said he was full of beans and that they always blame hep c, so I am still not sure but I myself leaning toward the hep c causing it. I cleared the hep c 15 years ago but this P/N hung on, it was not to bad up until a year ago now it is coming on me fast almost every month a new symptom. I don't know if it is due to having it so long and being 61 years old or if something else being its driving force or all 3. This burning body stuff so far is the worse so that's why the r lipoic acid question. He did not tell me anything [my neurologist] just gave me a test, said I had sensory nerve damage and walked out, so I am not sure what type I have?
Ironic, I was dx'd with Hep C around the time my PN's sudden onset. I had thought the PN was precipitated by the Hep C causing Cryoglobulinemia. Cleared the hep C in 2012, thought the PN would then clear, but remains still to this day.
I was lucky, did the INF+Ribavirin+Victrellis Tx, only got to shot #16 and had to quit due to damage to optic nerve. Missed last 8 shots but was SVR nevertheless.
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Old 04-07-2020, 10:19 AM #17
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Hi tnthomas, Your situation is kind of same as mine. When I first went in 2004 I was having a ton of problems I,e headaches,sore muscles.numb feet, lost a lot of weight could not eat. After test I too had dx hep c and cryoglobulinemia, I too started riv/peg and had to stop around shot 4 or 5 due to drug induced vasculitis. After stopping treatment the vasculitis went away and after my year on treatment hep c and cryoglobulinemia was gone. My P/N did not go away, but at that time I cleared till around 11/2018 I had only had sore and numb feet. Then from 11/2018 till now it has got worse.
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Old 04-14-2020, 10:50 AM #18
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Alpha Lipoic acid helped my husband's PN quite a bit. Jarrow is good brand to try. We also use Thorne Research and Life Extension brands.. He's not diabetic either. I don't remember what dosage he took but now he uses r-lipoic acid at about 150 mg/day.

Are you taking any B vitamins?
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Old 04-14-2020, 12:05 PM #19
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Hi Marlene, yes I do eat jarrows 500mg under the tounge b-12 and a folic acid 800 the burning on my body as of now is not as bad as when it started,dont know if it has calmed down, the lipoic acid is getting to it? or I am just used to the feeling? The burning I am having a hard time with is my lips,tounge and top roof of my mouth, Seems to go away at nite but starts back up tn the morning and is not real bad during the day unless I drink coffee,have fruit salad or a spicy type of food. I hope the lipoc acid I got will work. Right now all the store had was alfa lipoic acid 200mg I eat 6 a day, I am gonna look for the other stuff online I guess r lipoic acid maybe better ? maybe knock some of this burn down?
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Old 04-14-2020, 07:22 PM #20
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Consider adding a B compex to round out the B vitamins. B1 may be helpful for the burning if you are low in its.

It takes time to heal. You can plataeu for awhile and sometimes healing causes a temporary increase in pain and then you see a drop in pain levels. All very confusing when you're trying to figure it all out.

Check out Iherb.com They carry Jarrow and Thorne Research. Pretty fast delivery too.
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