Thanks again Mrs.D. I gave up the wine last week but my symptoms have worsened. I wish it was the wine causing PN but my gut tells me that it was the statin drug I took for almost 2 years.
I plan to continue my very clean eating & not drink a lick of alcohol but I'm wondering what your advice would be as far as supplements go if the toxicity of the statin is the root of my PN issue. Do you think that a drug I stopped taking 5 months ago could suddenly attack my system in such a way? It's hard for me to fathom but I am quite ignorant when it comes to medicine & the ways of the human body.
That being said - Do you still recommend the Thiamin/Benfotamine? And do you agree with the regimen that Wings posted of Vit B12, B-complex, Folate, Vit E, Acetyl -L carnatine & ALA, SAMe, Cal/Mag, Fish Oil, Flax Seed, Milk Thistle, and CoQ-10? I just wanted to get your thoughts before I run off to the health food store and spend our life savings on supplements. :-) Sally also mentioned many of these things including 5HTP for sleep which I could dearly use. I'm willing to do/try anything to get an ounce of improvement as I feel my quality of life diminishing so fast. Thanks again so very much for your time!!!

The most important thing to do for statin suspected PN is
CoQ-10. Statins block our own production of CoQ-10 which happens in the liver. So replacing this is important.

Statins also block factors called remyelination nerve factors in the nervous system. Remyelination is fixing the myelin sheath of the axons (it is their insulation). There is some concern that statins may damage mitochondria in cells, as evidenced by the
muscle damage they also can cause.

The mitochondria use fatty acids when glucose is not available, and CoQ-10 and acetyl carnitine carry those across the mitochondrial membranes. Also magnesium is used heavily in this process.

Wing's list reflects just about EVERYTHING ever posted on our old forum before this one. It is not necessary to take all that in the beginning. It is more important to really look at YOUR life and choose things FROM that list that may help.

To remyelinate damage to axons, you need active B12, Active folate (methylfolate), and omega-3 fatty acids. People with the MTHFR mutation cannot methylate B12 and folic acid, and hence need these special forms. This mutation is common, so I expect people to show here with problems concerning it.
Without the DNA testing to show methylation errors, taking the methyl forms is just good insurance and no more expensive really.

You could start with a quality CoQ-10 at 100mg a day. These are new since he made that list. Qunol is one brand, that is solubilized, and so is Q-gel ( http://www.epic4health.com/qgel-coq10.html )

You could add in the acetyl carnitine and the improved ALA...which is called Stablizied R-lipoic acid, after say a month on the Thiamine and CoQ-10.
Taking everything at once, will cloud the issue if you respond because you won't know WHICH things are working and which you really don't need.

Wing's post is old...and many things have changed since then. Some nutrients have been improved by manufacturers to be more effective at lower doses. And not everyone needs what someone else found useful.

My goodness you are a wealth of information!! I seriously want to send you flowers or something!!
I will follow your lead & not go gung-ho & try everything at once... I am just so fearful that these symptoms are going to get worse & I was of the mindset that I would try EVERYTHING & then if I get relief I would start to wean things out to see what I could live without.
Ugh. This PN is a nightmare.

When you drink alcohol..... there is an alternate metabolism in the liver to convert it. It is slower than glucose metabolism, and therefore, when you stop drinking, that is a shock and it takes a while to shift from that process to a different way of handling glucose.

It is explained in this medical video:
http://www.youtube.com/watch?v=dBnniua6-oM
about 1/2 thru this video is the liver metabolism explained.

It also reveals why sugar (which is 1/2 fructose) is so damaging.
It is a long video...but well worth it.

So when you stop drinking alcohol, you then crave sweets. This is very common in rehab situations. Increased carbs then need increased thiamine because thiamine is involved in their metabolism. During the first month or so, giving in a bit, will ease the increased perception of PN... but eventually you will have to cut way back on sweets/sugar.

Alcohol is also a blunter of pain and perception. When you don't have it anymore, you feel things more acutely. Alcohol is actually classed pharmacologically as an anesthetic, and was used heavily in the Civil War, for pain, when opium was not available, and earlier in fact all thru history. So I don't think your PN is necessarily worse since you stopped drinking, only more obvious.

You can add in a good Bcomplex. B-right by Jarrow has a long track record here for being sensible and useful, and quality.
It is not expensive and doesn't have too much of any one thing in it to be worrisome, and has the methylated folate now too.
http://www.amazon.com/Jarrow-Formula.../dp/B0016003Z0

I'm wondering if I should take a B vitamin at all as my last blood test in January showed high levels of B12. 1694 to be exact.

I just got the CoQ10 from my chiropractor. He did not have any Thiamine or Benfotamine in stock so I'm off to GNC. Do you think that they have a good enough quality brand? If not do you have a brand recommendation? Same with the acetyl carnitine and the Stablizied R-lipoic acid... any favorite brands? I hate to wait for something to come in the mail but I will if you deem GNC brands to be junky.

Thanks again for your time & the links!!

GNC is not likely to have Benfotiamine... and GNC is one of the highest priced outlets there is.

I use Doctor's Best brand, and get them easily at a huge discount from Amazon.

NOW makes an affordable acetyl carnitine. That you may find
locally.

In general you will pay 2 to 3 times more locally for the same things exactly as you would online.

If you were taking B12 when you had the testing done, and did not stop about 7 days before the test, then your level does not reflect much information. It only reflects what is in the blood at the time of the test.

If you did not get the new solubilized CoQ-10, you will need at least 300mg a day or more. The new versions are far superior to the older ones in oil.

Stabilized R-lipoic is rather new... very difficult to find locally.

The B-complex is mostly for the riboflavin and B6. Riboflavin is the cofactor to activate B-6 to pyridoxal 5 phosphate which is the active form in the body.

Thank you!
This is the CoQ-10 I got http://www.amazon.com/Ortho-Molecula.../dp/B000M5JVJE
Is it up to par (solubolized)? I'm not sure what that means & it doesn't say anything about it on the label. Doc told me to take 2 per day.

Thanks for the B vit info. Interestingly enough my doc had me stop taking B6 vitamins when this flared up saying that too much B6 can have negative effects on your nerves??

Finally - wondering what your thoughts are on Evening Primrose. I started taking this http://www.gnc.com/product/index.jsp?productId=2133879 a few days before finding the support group because I read that it can help with PN & it has 100mg GLA. I've been taking 2 per day.

I'm SO sorry to keep bothering you. But every-time you reply I think of something new. I wish you were my doctor!! :-)

Hello. You asked for success stories. I also have PN, from two surgeries on my ankle. It went up my calf. I started on B vitamines including b12 shots over a year ago now. I have definate improvement with this condition. Still numb in areas, but some of the ouch of the pins and needles is gone. I am still hoping for complete remission. I see a physiatrist, who is treating me with pain issues. I wish you all the best. ginnie

The the original poster, I feel that I am in the same boat and just want to extend my sympathy.

I have L carnitine and alpaha lipoic acid but I find that you guys discuss different kinds here on the forum. I hope I haven't wasted my money completely. I can't seem to find R lipoic acid in the health food stores
just a note - Inno-Vite makes a complex with Co q10, vit E, Carnitine, and vitamin C
Its quite expensive ($32 Canadian) my sister bought it for me as a gift. I took it for a while but didn't feel results so gave up and started on the alpha lipoic acid again.



Sigh...everything is so hit or miss isn't it. Good luck

I suffer from idiopathic peripheral neuropathy, was diagnosed 3 years ago and have refused taking Lyrica. So far I have no pain to speak of but the numbness that started out in my toes of both feet have now spread to the feet. I take no medication. I have heard much about R-Lipoic Acid, L- carnitine and Ubiquinol. When does one take these supplements, before or during or after meals ?
Anyone with success stories, please share. I know there's no cure for this disease, especially when it's idiopathic.