davecom Posted August 20, 2013 Report Share Posted August 20, 2013 Okay guys... so since my appointment a month ago with my neurologist when it seemed I was improving... a lot has happened to make me think that my small fiber neuropathy has continued to progress - and perhaps at a rapid pace. I've suddenly started having burning/tingling/pins and needles in my hands and feet all the time. My gasto stuff has gotten worse again too. I want to try some supplements. I have read the studies on alpha lipoic acid and I have read here a bit on it. I have ordered some. I am quite hopeful about it based on the studies I read. What else are people taking for small fiber neuropathy?Here's what I currently take:- Magnesium Citrate and Oxide Combo 250 mg- Vitamin D (D3) 3000 IU- Vitamin C (Ester C) 1000 mg- Daily Multivitamin (One a Day Men's 50+ - actually has some pretty good stuff in it but only 2.5 mcg B12)I am considering adding Omega 3 as well as ACETYL-L-CARNITINE. I am very much looking forward to trying Alpha Lipoic Acid (I got enteric coated tablets, so as not to aggravate further my extreme POTS induced heartburn). Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2013 Report Share Posted August 20, 2013 I've read articles suggesting that you need to make sure your B1 levels are up before adding the alpha lipoic. Some of us have found that benfotiamine is more effective than the regular B1. There are a couple of threads on B1 and what seems to appear to be connections with POTS. Acetyl Carnitine has been too stimulating for a few of us. As has Ribose. Issie Quote Link to comment Share on other sites More sharing options...
davecom Posted August 20, 2013 Author Report Share Posted August 20, 2013 Thanks Issie. After doing some reading I ordered 160 mg fat soluble benfotiamine. I'm going to hold off on the acetyl carnitine and omega 3 for now so I can evaluate the other two individually. Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 20, 2013 Report Share Posted August 20, 2013 ACETYL-L-CARNITINE Try R-Lipoic Acid, it is better absorbed and a lot more potent than alpha, try 100mg.Vitamin B12Fish Oil for anti inflammitorary properties.There are plenty more you could probably research into however these are the basics which have been studied the most imo. I plan to try these once I reach my confirmed diagnosis. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2013 Report Share Posted August 20, 2013 Because I'm vegan, I use Neuromins DHA only a few times a week. There are some studies questioning fish oils these days. Something to do some research on. There are other things that can be tried for inflammation that are pretty effective. I'm using astaxanthin http://articles.mercola.com/sites/articles/archive/2011/07/12/astaxanthin-the-antiinflammatory-nutrient.aspxand turmeric and ginger --(although, on a break from the last two right now). There are many more things that can be tried. I just started a new herb and we will see what it does. Issie Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2013 Report Share Posted August 20, 2013 Since I really feel a lot of our problems are autoimmune related - Symbiotics Immune Formula Colostrum works similar to IVIG without the side effects. May be of benefit with SFN too. I'm using this myself. Issie Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 21, 2013 Report Share Posted August 21, 2013 I started taking Alpha Lipoic Acid 600mg daily about 3 months ago and began to notice a significant reduction in pain after about week 5. ALA can actually be taken up to 600mg twice daily but as much as I would like even greater pain reduction if that is at all possible I'm fearful of a potential vasodilation side effect. Issie had posted that as a potential side effect a while back so I have been watchful of it. Thank you issie.Other dietary supplements I take;Tumeric 1,160mg ( Mayo recommended it but emphasized it had to contain black pepper )Omega-3 & DHA 2,126mgVitamin C 1000mgVitamin E 400 I.U.Vitamin D-3 2500 I.U.B ComplexI am also watchful of trying to maintain an anti inflammatory diet. Wishing you success. Janet Quote Link to comment Share on other sites More sharing options...
davecom Posted August 21, 2013 Author Report Share Posted August 21, 2013 Thanks for the replies guys. It's very helpful. I used to use turmeric in cooking for years almost every day before I got sick, just because I liked the taste, yellow color, and had read about its anti-cancer properties. I've been afraid to use absolutely any spices since the terrible gastro symptoms that came with this disease, but I should probably re-introduce it! Quote Link to comment Share on other sites More sharing options...
issie Posted August 21, 2013 Report Share Posted August 21, 2013 Janet, glad I've been helpful. Yes, turmeric and ginger have been very good for me with pain. With any herbs, you need to rotate on and off them or they will stop working. Some people, however, find that turmeric makes their POTS worse. So, it's another trial and error type thing. Issie Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 23, 2013 Report Share Posted August 23, 2013 Issie I hadn't heard before that some find a worsening of their POTS symptoms with turmeric. Do you know where Dr. G. stands on turmeric ? I never asked him. It was recommended to me by my Rheumatologist and one of the Mayo docs in consultative medicine who I'm sure didn't know much about POTS.Dave I have found quite recently that a gluten free diet has been helpful for my GI symptoms as well as general pain reduction.I guess in the end it really is trial and error with everything. Janet Quote Link to comment Share on other sites More sharing options...
davecom Posted August 23, 2013 Author Report Share Posted August 23, 2013 Yeah I've been on a gluten free diet since this started almost a year ago and dairy free for many years; in my case at least I don't think it makes a difference; but I'm not willing to go off of it and risk it with all the GI parts of this whole picture. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 23, 2013 Report Share Posted August 23, 2013 Anyone heard of agmatine (an arginine byproduct) as a supplement used for SFN? There is or there has been a clinical study assessing its effectiveness but no results have been published. Alex Quote Link to comment Share on other sites More sharing options...
davecom Posted August 23, 2013 Author Report Share Posted August 23, 2013 According to Wikipedia "Agmatine inhibits nitric oxide synthase (NOS)..."http://en.wikipedia.org/wiki/Agmatine Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 23, 2013 Report Share Posted August 23, 2013 http://www.painmed.org/2012posters/poster285.pdfYou can look up the clinical trial I have mentioned - can't post the link hereAlso, this explains to some extent the involvement of NO in low flow and neuropathic POTS: http://www.nymc.edu/fhp/centers/syncope/nnos%20in%20low%20flow%20pots.htm Quote Link to comment Share on other sites More sharing options...
davecom Posted August 23, 2013 Author Report Share Posted August 23, 2013 If I read that link correctly, neuropathic POTS patients actually have too much nitrous oxide availability? So I don't know if y'all have seen this recent study about PPIs having significant effects on blood vessels by reducing nitroux oxide availiability by 30%. I've been afraid to try them again (got severe headaches from all of them before) because of this... but maybe it would actually be good for me it seems. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 23, 2013 Report Share Posted August 23, 2013 One thing I learned about PPI's (I was on nexium for a couple of months) is that they can deplete you of potassium...not a good thing when you have POTS. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 24, 2013 Report Share Posted August 24, 2013 Alex I have never heard of taking Agmatine for help with neuropathic pain. I'm going to check that one out. Thank you Dave and Alex for the links and info. Janet Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 25, 2013 Report Share Posted August 25, 2013 http://www.med.nyu.edu/content?ChunkIID=38207 Quote Link to comment Share on other sites More sharing options...
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