250mg B6 twice a day? Not a common treatment in the US anymore. For a short burst may be helpful, but over time you may see side effects from this. 500mg a day of B6 has been implicated in long term use to cause neuropathies(toxicity) in some people.

I'd continue with your methylB12 and be sure to take on an empty stomach.

The antibodies you mention attack the cells that make intrinsic factor. Intrinsic factor binds to B12 in food and helps with its absorption. Acid is required to release the B12 from animal proteins, first. Autoimmune disease is sometimes a sign of gluten intolerance. So it might be a good idea to be tested for that as well.

Did your doctor mention low acid in your stomach as well?

Thank you very much mrsD for your suggestions. I have been taking methyl B12 on empty stomach.
No, doctor didn't mention about low acid. I will ask when I see the doctor next time.

Buy 1 Get 2 Free Sale at Puritan's Pride
 

Hi all, FYI -

Puritan's Pride is having their buy 1, get 2 free sale again. I have a good supply of vitamin B12 (plus I prefer a different brand over Puritan's). I may pick up some vitamin D. 5000 IU potency vitamin D3, 3 bottles for $9.99! :D

Sticky's??
 

It's been a long time since I've been here and just like in the past, I have such a hard time figuring out how to find Mrs. D's supplement list (said with complete embarassment!). I clicked on the sticky, but ??? Forgive me!

I'm specifically interested learning how much ALA is TOO much? Per my doc I can take up to 1200 mg's a day but I've been taking double. And, is Rlipoic truly better? Lastly on dosages-how much NAC is too much? Thank you!

I'm wondering (and frustrated by) why sometimes my combination of supplements seem to "shut off" the searing pain in my legs, while other times, it does nothing at all? I was just starting to relax a litte after seeing some improvement in my progressive body burning, only to be up all night with worsening pain again? I've been on the supps for about 2 months consistantly. The only thing I stopped was the B12 injections because I was getting severe acne. After doing some reading I learned the sublingual were just as effective so I ditched the needles and stayed on my jarrow 5000mcg (25,000mcg). However, I dropped the injections weeks ago so I'm not sure that has any tie into why I'm exploding with pain.


I didn't eat or drink aything I don't typically eat or drink. No extra stress.

I'm on 3600 mg's of neurontin too and just starting to see hope of decreasing it for the first time in 4.5 years.

Any info would be greatly appreciated! Thank you:)

Kate

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!!!

Puritan's sale and vitamin D3
 

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

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.

Nubie
 

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

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.