[beatle]

Originally Posted by mrsD

Your TT means you do not methylate properly so should be using methylB12 and methylfolate.

That's what I thought until I read this:
http://mthfr.net/methylfolate-side-effects/2012/03/01/

I have been taking Metanx daily for about a year (I am not diabetic, it's for the PN symptoms) and it contains L-methylfolate. I suffer from most of these side effects...or are they just symptoms of PN? Maybe I should discontinue the Metanx and see what happens.

(I started this thread to avoid stomping on Stacy's thread )

[mrsD]

The product Metanx has quite a bit of methylfolate in it.
I've always wondered why they put so much in there.

The OTC methylfolate is 800mcg by comparison.

Yes, I would stop the Metanx for now. See what happens. If you still suffer after a year, then it is obviously not working for you in the ways you want and need.

However, you may still need "some" methylB12 and methylfolate, you you can take them OTC and get them in much smaller doses, take separately or even every other day until you reach a more comfortable level.

You can consider switching to the other B12 hydroxocobalamin instead of methylB12, but it is much more expensive and more difficult to find on the net.

[beatle]

That makes perfect sense, thanks so much. I think my neuro prescribed it because they don't know what to do with me and hope that something works. Btw, I take two per day so a double dose!

Can I not just take regular Folate?

[mrsD]

TWO a day? eeeekkkkk!

Well, as the snp link states you only methylate about 35% if that.
So you will need help with that IMO. You don't have to take the methylfolate every day... say 800mcg every other day or every 3rd day. That should work for you.

Methylfolate is Metafolin, and available from iherb.com from Solgar.
You could also get by by reducing the methylB12 to 1000mcg every day or other day. (get a test after you have been off the Metanx for at least a month or 2, before starting the B12.

[beatle]

I'm telling you, they've been throwing a lot of stuff at me to see if anything works. I can't tolerate antidepressants at all and I could no longer form complete sentences on Gabapentin so I've been back and forth on Lyrica. I do not like what it does to my head but desperate times, desperate measures...

Have there been any discussions about Cannabis for PN?

[Kitt]

I have read that it works for some and not for others.

[hopeful]

Originally Posted by beatle

I'm telling you, they've been throwing a lot of stuff at me to see if anything works. I can't tolerate antidepressants at all and I could no longer form complete sentences on Gabapentin so I've been back and forth on Lyrica. I do not like what it does to my head but desperate times, desperate measures...

Have there been any discussions about Cannabis for PN?

Hi Beatle,
My doctors did the same with me. I think I have tried very med that has ever been prescribed for neuropathy. Unfortunately, I'm very sensitive to meds and have a hard time taking them.

I actually asked my rheumo if any of his patients admit to using cannabis for pain. He smiled and said technically he was not allowed to discuss it with me. He said he does not believe medical cannabis will pass anytime soon in my state. Our governor will never allow it. After our discussion I was left with the impression that he believes it works.

I have a brother in law with PN from diabetes who uses it. He told me it really works for him.

I'll be honest if I can ever get it legally, I will give it a try. I can't see how much worse it can be for me then some of the other poisons they expect me to pump into myself.

I'm not very happy with pharmaceuticals companies right now.
Hopeful

[beatle]

The cannabis topic might be best for another thread...or maybe not. Does anyone know if it is OK to discuss cannabis on NT?

[mrsD]

Yes you can discuss this...from a medical use standpoint, not a recreational drug standpoint.

Search Cannabis, or marijuana, in our search engine on page 1 of the PN forum. Many of the other forums though have discussions over the years. Some with suggestions as to which type to get etc.
For those posts, use the Search in the bar the goes across the page at the top of each page here. You can search all of NT that way.

[IllPn]

so here in IL it is legal BUT not for PN my friend said it is in pill form her dr did not recommend it she is on heavy drugs for her nerve damage due to an injury