small fiber neuropathy supplements question
 

First of all, today is my first day joining this board and I just wanted to say hello to everyone. I've read quite a few posts on here over the last couple of days and have found this site to be informative, and perhaps more importantly, hopeful.

I have small fiber neuropathy. Diagnosed through skin biopsy. Considered idiopathic currently, but I have had some other issues recently...small pleural & pericardial effusions and positive ANA, and various other physical symptoms and the rheumatologist I am seeing is, in her word, "suspicious" of an autoimmune disease, she just hasn't been able to identify a smoking gun for a particular one yet. So, perhaps my SFN is headed towards being considered caused by an autoimmune disorder, instead of idiopathic, I don't know. I'm under the care of both a neurologist and rheumatologist.

My question involves supplements for SFN, specifically two...Acetyl-L-Carnitine and Lipoic Acid. What I'd like to get are others' opinions on the following:

1. Which one of the two do you think typically would be better at helping to treat SFN?

2. If I start taking them should I start them one at a time or both together?

3. Could you name some good brands to purchase? A few, just in case I run into trouble finding Doctor's Best, which I've seen mentioned several times on this site, at the Vitamin Shoppe.

Am having a really bad "flare" (gosh I hope to goodness it's just another flare) and am ready to start trying some new things for this wretched SFN. Am currently on gabapentin, which I just increased to 900 mg a day, and just recently began a 6 month trial with plaquenil.

Thanks in advance for any help with this, and again, nice to meet everyone.

I'm not sure--
 

--based on the admittedly unscientific, anecdotal reports typically found here at Neurotalk, that there would necessarily be much to choose between the two--I actually think you could try them both, although you should take them separately from each other. Some people have good success; some, not so much--response is rather individual. (I would take R-lipoic acid, rather than alpha lipoic, for many of the reasons listed in our threads--the R-faction is the one biologically active in the body, allowing you to take less of it, etc.)

A good 1000mcg/day dose of B12--methylcobalamin preferably, and that taken apart from anything else--would also be a good idea.

In terms of profile, lipoic acid has the longer history--it has been used in Europe for many years, on prescription, as a treatment for diabetic neuropathies primarily, as it has glucose regulating as well as antioxidant properties. Acetyl-L-Carnitine is also a potent antioxidant and is supposed to help repair/prevent mitochondrial damage, which is increasingly being thought to be a major factor in some neuropathies.

I don't tend to recommend specific brands, but you can look for these in on-line stores (which I think are more comprehensive in terms of choices than most of the brick/mortar stores). Many of us use iherb, swansonvitamins, vitacost, and others--all you've have to do is put these into a browser search box.

Many small fiber neuropathies are thought to be ischemic/circulatory in nature--more obviously in the case of diabetic or metabolic ones and more subtly in the case of autoimmune ones (the autoimmune attack may be to components of the nerves themselves or to the blood vessels or supportive tissue that feeds those nerves, as in the case of some ANA-mediated conditions). So anything that helps support circulation wouldn't hurt and might help.

Since you are positive for some autoimmune thing, I think using fish oil, daily (or Krill), would help with inflammation.

EPA and DHA in the fish oils have shown benefit for fixing myelin damage and also helping the dorsal roots along the spine.

B12 also is a cofactor in this. So glenntaj's suggestion is a good one. Make sure you use the methylcolbalamin in case you are a non methylator. The other forms are synthetic and need activation. Methylcobalamin is also used in autism to chelate mercury for children.
http://www.ncbi.nlm.nih.gov/pubmed/7292517

If you suspect a mitochondrial damage factor, which results from chemo treatments and some toxins, drugs, etc, the acetyl carnitine would be a definite thing to consider. It is not really harmful, but pricey, so you could take it with the lipoic if you choose.

I'd suggest getting the B12 tested first. And also I'd start the lipoic first for a couple of weeks before adding in the carnitine.
It is often best to do them one at a time to see what happens.
That way you'll have an idea which is working and which is not.

Repair is a slow process...it is not like taking drugs for symptom relief. So one has to be patient.

Good brands are NOW, Country Life, Jarrow, Puritan's, and Doctor's Best. They are all affordable. There are more expensive brands like LEF which some people prefer. I am using Doctor's Best now for 3 things, and Puritan's also for my B12, lysine, taurine, Vit D3 etc.

If you do B12 methylcobalamin orally, make sure you take it on an empty stomach. It can get lost in food and not be absorbed.

For me, taking quite a few supplements has been my answer. Just a couple would not have made the big improvement. Alpha Lipoic Acid is wonderful, Benfotiamine is just as important for me, l carnitine, b12, fish oil and others all help so much. I take many great ones with the help of my integrative doctors. They know the best brands like Pure Encapsulations, Designs for Health and others.

Thankfully, I have never needed prescriptions. I am healing and doing great with my supplements and diet. No sugar, gluten or bad carbs. Just good carbs. A paleo diet. It helps so many illnesses. Once inflammation from carbs/sugar is gone, the supplements can do their job. Antioxidents and others can help heal the nerves.