This site has some good information on Vitamin D for both patients and doctors.

Pain Treatment Topics

The Patient Brochure and Practitioner Briefing at first appear to be written for musculoskeletal pain, but both also report an improvement in neuropathic pain. The Practitioner Briefing mentions this study:

The Full Report states the the pain levels (from trial) improved from 'distressing' to 'mild'.

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This is a good link to an alternative data base used by some Universities.

http://www.umm.edu/altmed/

This is its index with categories of information:
They do not list all supplements, but I consult this resource often because they are very complete on drug interactions with supplements and also depletion of nutrients by drugs.

They have a address that does not change, when you are in each special category, so linking there to specific screens is not possible.

Benfotiamine is a lipid soluble form of water soluble common Thiamine (B1).

Historically B1 was the only treatment for neuropathy for many years. The typical dose is 100-300mg daily in divided doses.
Then the SSRI antidepressants emerged and also Neurontin (followed by Lyrica) and the treatment for PNs changed and doctors dropped the thiamine. This I believe is a mistake.

Thiamine is easily found in most grocery stores and pharmacies. It remains inexpensive as well. Starting just over a decade ago, this new form called Benfotiamine started appearing in studies.
For quite a while it was not available in US and then when it did start becoming so, it was ferociously expensive. That has now changed.

Here is an informative website on it:
http://www.benfotiamine.org/FAQ.htm

I find it affordable at iherb.com and I use the Doctor's Best brand. The website above endorses much higher doses, than I use and typically recommend. I think for many people 300mg a day is adequate. But we have had some posters here who used 900mg-1200mg daily. At that level, cost will become an issue for many.

I recommend benfotiamine for neuropathies that are not responding to B12 and/or Vit D. Also some people have metabolic problems with the genes that metabolize alcohol. These patients also can benefit from benfotiamine.

I'll also add that beriberi (thiamine deficiency) does occur in some patients and go unrecognized by doctors. This is due to taking some medications that deplete thiamine, like the strong loop diuretics. But it can be due to low dietary intake, high alcohol consumption, or a genetic flaw that then requires higher daily intake. Malabsorption from gluten intolerance/Celiac or inflammatory changes in the GI tract like Crohn's may also cause beriberi. The genetic issue is called vitamin "dependency" and occurs with other vitamins ---B6 for example. People with a vitamin dependency require higher amounts of the vitamin compared to the majority of others.
Here is a link to a medical site on beriberi:
http://emedicine.medscape.com/article/116930-overview

Since the link I gave at the beginning of this post, is very complete, there is not much more for me to say at this point, other than benfotiamine remains a good option to add to any supplement list you may be considering.

edit to add some more links from PubMed on this subject:

http://www.ncbi.nlm.nih.gov/pubmed/20188835

This study does give doses:
http://www.ncbi.nlm.nih.gov/pubmed/18473286
And does reiterate what I post that it takes TIME to show benefits. People often push the dose UP to get faster response IMO.

This is a chemical explanation:
http://www.ncbi.nlm.nih.gov/pubmed/18384109

http://www.ncbi.nlm.nih.gov/pubmed/18220605
Before gabapentin and SSRIs drugs, thiamine was the main treatment for PN. I believe it should remain high in the list for
any PNer and befotiamine is superior IMO. However, benfotiamine at one time was super expensive and few could afford it. That has changed in the last 3 yrs or so.
Thiamine remains inexpensive, but it makes some people have a body odor that limits its use.

This PDF gives some good data:
http://www.altmedrev.com/publications/11/3/238.pdf

This is an older paper:
http://www.ncbi.nlm.nih.gov/pubmed/16359659

This is from 1999:
http://www.ncbi.nlm.nih.gov/pubmed/10219465

I used to use thiamine in bursts. A month or two at a time, in the past. When Benfotiamine became affordable, I changed to it.
I only use 150mg a day now, but I started at 300mg in the beginning. I don't feel it is a cure...but it sure does prevent progression, and take care of alot of the discomfort for me.
I do think some people have a higher genetic requirement for it.

This one from 1996: Germany where the beginning studies originate.
http://www.ncbi.nlm.nih.gov/pubmed/8886748

Edit:
Here is a new link... discussing the better absorption and bioavailability of Benfotiamine vs thiamine:

http://www.ncbi.nlm.nih.gov/pubmed/8929745

This supplement has been used for over a decade, for neuropathy that occurs in HIV patients taking anti-retrovirus drugs.

So that has spurred research in general. Here is a link with several papers about it:

http://www.integratedhealth.com/infoabstract/alcab.html

Also there are papers showing usefulness of ALCAR for patients undergoing chemotherapy treatments. For Chemo patients it is best to start the ALCAR before the treatments start.
edit to add 8-15: I am adding this information after seeing some critics of ALCAR not working for chemo neuropathy.
This new article from 2014 for example:
http://www.ascopost.com/issues/may-1...t-cancers.aspx

But then this 2014 article shows improvements in some chemo patients using carnitine:
http://www.sciencedirect.com/science...13231714000214
This link also has many interesting graphics to help explain the complex topic.

So each patient will have to do some research on whether carnitine is for worth trying for themselves.

end of edit.


This link to our PN board has a paper from 2007 on the usefulness of carnitine during chemo:

http://neurotalk.psychcentral.com/post507671-2.html

Our bodies make carnitine from the essential amino acid l-lysine.
But this conversion may fail or be affected by certain other drugs you may be taking. Most of the drugs for HIV affect carnitine levels. Also the anti-seizure drug, Depakote depletes this. There have actually been deaths from low carnitine levels induced by Depakote.

Most advice involves acetyl-l-carnitine, because the acetyl group may be used by the brain to make acetylcholine, a valuable neurotransmitter. Also Acetyl carnitine is slightly better absorbed than regular l-carnitine.

Carnitine supplements are not inexpensive. So if you suspect your PN is induced by drug toxicity, which may be affecting the mitochondria of the nerve cells (which make energy), then you can try it. There are limits to carnitine absorption in the intestines, so if you decide to use high doses (over 500mg/day) it is best to break them up and take them at different times.
Recently we have had some posters visit here saying their neuro has suggested this supplement. So information is finally getting to them.

Articles like this one 2010:
http://www.ncbi.nlm.nih.gov/pubmed/20302919

and
http://www.ncbi.nlm.nih.gov/pubmed/19768376

This study shows decreased pain in diabetic patients and even some regeneration of nerves in one study:
http://www.ncbi.nlm.nih.gov/pubmed/18940920

There are very few side effects reported with this supplement. In really high doses of 10 grams or more a day some GI upset may occur, since not all is absorbed and remains there. With the doses used for neuropathy, they are not this high, and the 3rd link above used 3 grams a day.

Acetyl carnitine is now being included in supplement mixtures targeting Anti-aging effects and improvement in Alzheimer's. Included in these mixtures are CoQ-10 and biotin, and sometimes alpha lipoic acid. I would use the carnitine separately to start, because high doses may be needed, and combo products do not allow for that --and become very expensive.

Regular l-carnitine is also on RX. If you can convince a doctor to give it to you this way, it may be covered on your insurance. (it is not acetyl form).
This RX form is also available OTC from the same manufacturer, from this source:
http://www.epic4health.com/lcar60cap.html
Some people feel more comfortable with this type, so I include the link to it.

Any questions are welcome here. You can also search the main forum below using the keyword "carnitine" and find many discussions.

Dear Mrs.D,
I would like to try Benfotiamine, when I went to search Benfotiamine, I think I saw Benfotiamine with Carnisine and Benfotiamine with Thiamin (or even Benfotiamine with V - whatever that was). Which one are you recommending?

For a start, I'd like to take the 150mg. If I am right, you started from 300mg then reduced it to 150mg. I am sensitive to most medicines/supplements so I will try first the 150mg. Do think that is enough?

Thank you.

I'd get the Doctor's Best Benfotiamine 150mg.

If you are worried about high doses, just do 150mg a day.

If you get no negative reactions, you can increase to 300 for a couple of months and see if that helps.

I'd stay away from mixtures of things. You cannot control mixtures or see what is really doing what.

I say this about "reactions". I had great hopes for NAG-- n-acetyl glucosamine, but it seems to inflame my nerves worse.
I never expected that, since I have used glucosamine in the past (with not much results). I've tried 3 times, and got inflamed nerves all 3 times!

Mrs. D,

Please tell me if my supplements now are fine. Please take note that my prescribed medications are Synthroid, Gabapentin and 3 eye solutions for my dry eyes (i have no Sjogren's Syndrome) ---

1. Methyl B12 - empty stomach
2. Multivitamin
3. Vit C - 500mg 2x a day
4. Vit E - 400mg 1x a day
5. Selenium - 200 mg 1x a day
6. Omega 3,6,9 - 800mg 2x a day
7. Glucosamine (stopped starting today)
8. Calcium with VitD - 600mg and 400mg, respectively 1x a day
9. Vit D3 - 2000mg 1x a day (taken together w/ Calcium - taken 5hours after Synthroid)
9. CoQ10 100mg - 1x a day (taken at night together with the 2nd VitC and Omega)

To add:
1. Benfotiamine 150mg - 1x day - Mrs. D, can I take this together with VitB12, or can this be taken with the other supplements? Does this affect absorption of other drugs?

Plan to add after thyroid stabilizes:
1. R-Lipoic
2. Acetyl L-Carnitine (I am not s ure if this is the right one)

Please feel free to recommend what you think is best.

Thank you very very much.

Looks good to me. I think Benfotiamine has better absorption than thiamine:

http://neurotalk.psychcentral.com/post850997-117.html

I think you can take it with your other supplements that don't need empty stomach.

I have recently joined this forum, thanks so much for your info Mrs. D. I have been researching supplements that help in methyl conversion that may assist in regeneration of nerves damaged by idiopathic polyneuropathy in my feet. Especially interested in your opinion of TMG, DMG and a supplement called Phosphatidylserine. Also have found warming my feet while taking a sublingual B-12 5mg seems to help speed the nerve recovery, which is still very slow, but is progerssing. Would heating pads and tens units help my feet with more circulation of these supplements? How about L Arginine Gel? Should I be walking for an hour a day like I used to before this affliction hit me, or would the walking make it worse. I am using all the supplements to rebuild mitochondria, (CO Q10. Benfotiamine, Biotin, ALA, Acetyl-L-Carnitine, Magnesium. Any suggestions you could provide to speed up my foot polyneuropathy reversal would really be appreciated. BTW, my neurologist said my condition was irreversible, and likely progress to more pain as I age. I'm 60 years old. I am taking 600 mg of gabapentin per day, down from the 1500 mg I was taking several months ago. Thanks much for all your help.

Welcome to NeuroTalk:

If you use heat TOO much...you may make the nerves hurt more.
Some is good... too much is not good.

Have you had testing for MGUS or other Ig proteins? This may make your circulation slower.

Do you smoke? This can reduce circulation to the legs and feet.

You could try the arginine gel. It may help. But I would encourage you to find some more answers eventually.