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!! :-)

Hi jcgrome
 

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:hug:

Yowsers! That is expensive and nowhere claims solubilized form. Evening primrose is okay, and best taken with other Omega-3 fatty acids for balance in the body. Years ago it was highly recommended for diabetic neuropathy, and some people here have used it. I used it when I first started Omega-3's a decade ago, but dropped it after about 2 yrs, as it didn't seem necessary anymore. Once your Omega-3 ratio changes for the better, the other fatty acids come back into balance eventually.

I have an Omega-3 thread here:
http://neurotalk.psychcentral.com/showthread.php?t=6092
There are many "smart foods" now with Omega-3s added, so I use them less in supplement form now.

To compare with your OrthoMolecular product:
120 Qunol 100mg (solubilized for better absorption) is about
$35.00... and is a 4 month supply. It appears that your product is the old form... so I can't offer up how much of that will actually be absorbed.

One thing I do here is find affordable quality products, because most people cannot afford to spend so much.

The "nerve" damage from B6 starts from 500mg or more a day for years. In reality there have been very few people proven to even have it. Recommendations sometimes go very conservative but 100mg a day of B6 is typically the highest I will recommend. I never used more than 50mg a day myself.

Pyridoxine in vitamins is not active you know. It has to be activated in the liver to pyridoxal. So the quality products now have it in that form to some extent today. The cofactor in the enzyme to activate pyridoxine for of B6 is riboflavin. B2. Riboflavin also contributes ribose, to the cells which make ATP from it. Without ribose, there is less energy production.

This is the Qunol website:
http://www.qunol.com/

(Just a hint...things sold thru chiros or naturopaths, tend to be highly
inflated in price.)

Hi mrsD, I just found this board and joined. My wife is two years from her diagnosis of Guillain Barre Syndrome (GBS), with peripheral neuropathy ever since. At least, we were told that's what she has. From reading here, I'm wondering if PN is right. Nothing has worked to even put a dent in her PN pain, but maybe we've been going after the wrong thing? Your posts make sense to me, and I'd appreciate your opinion.

Your post intrigued me:
Early on, we were careful to have a regimen of B-complex vitamins for her, but after a month or so, there was no change in the pain level, and my wife no longer takes the vitamin supplements. We continue to search for an effective treatment.

My wife's GBS left her with axonal damage, confirmed by nerve conduction studies. Although she has regained most limb movement, she has never been able to rid herself of the full body pain.

Do you think she does not have PN, but something else? If her pain is PN and can be treated with vitamin supplements and the like, what have we been doing wrong? She is in constant agonizing pain, and we've seemingly tried everything. Do you have any thoughts on this?

thank you,
Dave

Dave--
 

--has she been tested to see if she has chronic inflammatory demyelinating polyneuropathy (CIDP), which is often considered to be the less acute onset, lingering version of Guillain Barre (though there is some overlap in possible presentation)?

There are some people who have what appears to be a Guillain Barre episode but the damage lingers for far longer, or they plateau in recovery and do not get any better from that point (unless, sometimes, from immune-modulating therapies such as IvIg). And CIDP can have an acute or sub-acute onset, and then have a relapsing or remitting course, almost like a peripheral nerve version of multiple sclerosis. Many researchers think of Guillain Barre and CIDP as similar processes along a continuum in terms of onset and effects.

I'm not saying proper nutrition or supplementation won't help--these are good ideas for any of us with any condition--but depending on where evaluations are done and who does them, all options may not have been considered. It does sound as if your wife could use a work up at a tertiary center that specializes in neuropathy and neuromuscular conditions.

Take a look at:

http://neuromuscular.wustl.edu/antibody/gbs.htm

http://neuromuscular.wustl.edu/antib...mdem.html#cidp

Yes, Glenn is good at explaining the details of this. Thanks as always, Glenn. ;)

GBS is typically treated today with IVIG... and is considered an autoimmune type of reaction. In the past before IVIG was available GBS was treated with plasmapharesis ...where the blood is taken out of the body and spun so the antibodies fall out of the serum and then it is put back. People with myasthenia gravis sometimes still have this treatment.

GBS often follows an infectious illness, say food poisoning with Campylobacter bacteria in undercooked chicken or other meat, or a virus. Some modern vaccines have a disclaimer warning on them the GBS may follow injections of these vaccines.

CIDP and GBS are autoimmune illnesses, and treated as such.
All the supplements we discuss that enhance remyelination, may be helpful to healing. But if the autoimmune process is not suppressed, supplements won't be able to keep up with any healing needed.

All the best to you & your wife sddave. I can sympathize with her pain, being in the midst of it myself. It's a horrible feeling to never be able to get completely comfortable & to have life's little things taken away due to pain (I never thought I'd miss doing laundry!) Please know that my thoughts are with you & everyone suffering from this puzzling ailment. I'll be sure to keep you all posted if I have any success with my new vitamin/diet regimen.