[mrsD]

There have been people who use quite a long list of supplements.
Some of their posts can only be found using the search function.
One was Wing42... and when people mention the stickies, usually that is what they are looking for:

http://neurotalk.psychcentral.com/post9580-18.html

http://neurotalk.psychcentral.com/post9583-19.html

http://neurotalk.psychcentral.com/post9586-20.html

Those 3 posts are what worked for him.

I tend to have people start off with the most common deficiencies and fix those first, then add in other things according to their symptom development and history. Some people have DNA damage and so supplements for them would cluster on DNA mitochondrial support. (mostly from toxins and drugs)

Others have diabetic or alcohol induced PN and ALA (or the new stabilized r-lipoic acid and benfotiamine would help more that that.

So therefore there is no one "list" that would be better for everyone, since there are so many types of PN.

For explanations of the various common supplements there is my supplement thread.

http://neurotalk.psychcentral.com/thread121683.html

The subforum above has several posts now discussing the various supplements..this is its link:
http://neurotalk.psychcentral.com/forum119.html

Yes, R-lipoic is better absorbed, but you need to choose the STABILIZED form, which is also called NaRALA on the label.
Doctor's Best makes this. 100mg a day is often enough.

The old ALA used in high dose should be taken on an empty stomach...1/2 of it is not active. You can spend alot of money on this type, whereas the STABILIZED type is less expensive by far to use.

NAC doses are typically 600mg a day (up to 3 times a day if tolerated).

Flares seem to occur for everyone to some extent. The Weather can do it...with extreme lows when storms move in triggering pain. Some people with autoimmune issues have waxing and waning periods when their disease becomes more active, and then later on sleeps.
People with inflammatory types of PN can see improvement during flares with aspirin (in AlkaSeltzer form) or other NSAIDs.
Fish oil can help this type as well.

[kate525]

Originally Posted by mrsD

There have been people who use quite a long list of supplements.
Some of their posts can only be found using the search function.
One was Wing42... and when people mention the stickies, usually that is what they are looking for:

http://neurotalk.psychcentral.com/post9580-18.html

http://neurotalk.psychcentral.com/post9583-19.html

http://neurotalk.psychcentral.com/post9586-20.html

Those 3 posts are what worked for him.

I tend to have people start off with the most common deficiencies and fix those first, then add in other things according to their symptom development and history. Some people have DNA damage and so supplements for them would cluster on DNA mitochondrial support. (mostly from toxins and drugs)

Others have diabetic or alcohol induced PN and ALA (or the new stabilized r-lipoic acid and benfotiamine would help more that that.

So therefore there is no one "list" that would be better for everyone, since there are so many types of PN.

For explanations of the various common supplements there is my supplement thread.

http://neurotalk.psychcentral.com/thread121683.html

The subforum above has several posts now discussing the various supplements..this is its link:
http://neurotalk.psychcentral.com/forum119.html

Yes, R-lipoic is better absorbed, but you need to choose the STABILIZED form, which is also called NaRALA on the label.
Doctor's Best makes this. 100mg a day is often enough.

The old ALA used in high dose should be taken on an empty stomach...1/2 of it is not active. You can spend alot of money on this type, whereas the STABILIZED type is less expensive by far to use.

NAC doses are typically 600mg a day (up to 3 times a day if tolerated).

Flares seem to occur for everyone to some extent. The Weather can do it...with extreme lows when storms move in triggering pain. Some people with autoimmune issues have waxing and waning periods when their disease becomes more active, and then later on sleeps.
People with inflammatory types of PN can see improvement during flares with aspirin (in AlkaSeltzer form) or other NSAIDs.
Fish oil can help this type as well.

Thank you, I found them. I'm still on fire today which is a sign for me that this darn disease is progressing. Each and every time I've had an expolosive night with out diminishing pain the next day, the disease has ramped up. I was pretty "stable" with extreme burning mainlly sticking to my feet (but needed neurontin to function) ad then this past Jan, it began spreading up to the mid thigh. Severe, severe pain. The vitamins seemed to put the fire out for the most part, but now im confused. I'm on IVIG through a Yale neuro who uses it as a "proven" treatment for pain in people with SMF neuropathy as a result of long term lyme disease. Welp-it hasn't done a thing to reduce my pain and only confirms (to me) that I don't have an auttoimmune issue. I've been on it since Oct with zero benefit. Since he claimed to have a 100% success rate, I've been hoping for the same result.

My skin biopsy is still w/in normal limits but is HALF of the value it was in Dec of 2011. That plus this rapid increase in pain and location, only proves I'm progressing despite the IVIG intervention.

The only thing I've stopped is the ridiculous amounts of antibiotics I was taking for the lyme. The neuro wouldnt treat with IVIG unless I stopped abx prescibed by a lyme specialist. Knowing that long term use of abx can also CAUSE neuropathy by decreasing B's and was only making me so, so sick, I had no problem stopping (ive been on a for 14 years icluding years of IV abx).

I am beyond frustrated that I CAN'T figure this out!! I was NEVER good at solving mysteries and even used to get my butt kicked in Clue as a kid

Help!!!

[julleri]

Hi again all,

I know I sound like a Puritan's Pride spokesman, but I am not! It's just that they are having such an amazing sale for the Memorial day holiday, and the sale ends today! I got 3 bottles of vitamin D3, 100-counts, 5000 IU for $2.99 TOTAL, with FREE shipping. That's pretty amazing, and vitamin D is another one I was low in, and another one, like B12, that can be hard for people to get enough of...

Hope everyone is doing well.

Jason

[mrsD]

Thank you for the reminders, Jason! I made an order yesterday.

I like it that they now take PayPal... and that 5,000 IU Vit D is the one we use too!

Today May 28th is the last day for free shipping, too. It is a nice way to get your yearly supplements.

And BTW, Puritan's Pride and Vitamin World are the same owners.
Vitamin World however...is much more expensive. I talked to Puritan's a few months ago and they verified that for me, since I started getting Vitamin World emails thanking me for purchases I wasn't making! Seems they have combined their mailing lists.

[VE4PN]

I am a nubie here but have been reading a lot of the back posts. I have been taking the cyano B12 for many years because of the tingling in hands and feet and "cloudy" thinking that comes on if I don't take an injection every three weeks. I have kept my levels at about 1040 for years and it works for me. Early in life I was told I would be in a wheel chair later in life. I am 67 now and just fine. I have had DNA testing done and the problem is hereditary in my line. My daughter and son both have the same symptoms and must inject B12 monthly. I live in Manitoba, a province that is supposed to have one of the highest MS levels in the world. I think a lot of the symptoms of mild MS doctors here are finding and treating are really B12 problems. I have one question however. I have always injected into my thigh muscles just because I find it easiest. Do you think this is the best spot? I was originally told to do it in the stomach area but never did.

Dave

[mrsD]

There are now recent studies showing no difference between oral and injectable. If you switch to daily oral, use the active form methylcobalamin on an empty stomach....you won't need injections at all.

[Wide-O]

As someone who had injections before and then tried oral, I can confirm what MrsD. says. It's cheaper and less hassle.

If you continue to inject, however, B12 injections are preferably done intramuscular. Best place (as it's the largest muscle area) is the lower back just above the buttocks, but since that is impossible for self injection, the second best choice is the thigh.

Of course, this depends on the type of needle you are using: if you are using the short ones (I forgot the technical details) it won't really matter; the needles for IM are a bit longer, but can also potentially damage nerves if you miss the correct spot.

I have never ever heard about injecting in the stomach, even in long discussions with medical personnel about the best spot for B12.