High Dose Methyl B-12 for Peripheral Neuropathy (PN)--Carolina/Elaine, Soycoffee

[soycoffee]

The following is one of my lost or modded posts, that I happened to save on my hard drive. There is probably some missing information, and background, and personal story. That can probably be filled in as we go:

The Remaining (Saved) Post:

Elaine (Carolina) posted in the thread Re: Sjogrens Related Neuropathy - IVIG, Cymbalta and other Relief. She posted a LOT of references to studies of (specifically) Methyl B-12, and asked me (because we talked offline about methyl b-12 a couple of months ago) to talk more about Jarrow Methyl b-12.

Here are parts of her opening to the discussion, to which I am responding.

Soycoffee:  Thanks for the mention of Jarrow methyl b-12

Here is some research published by NIH on the research on Jarrow methyl b-12 and PN.

http://www.ncbi.nlm.nih.gov/pubmed/8021696

http://neuropathytreatmentgroup.com/nrs/clinical-studies

I am very excited about this possibility.

What are the side effects, what are the challenges in taking Jarrow methyl b-12?

If you are following the protocol, and titrating up to *your* maximum dose with some advice from seasoned b-12 users, the side effects are manageable. The worst side effect is anxiety; people become anxious about what they are doing, and want to stop off the protocol. That's a problem, because when they try again, the side effects are worse than the first time, and they have to go very slowly.

That is, it's a regimen that takes more than a New Year's Resolution. And it takes some coaching from someone else who has succeeded with the protocol.

The medical support for the action of Methyl B-12 comes from a well-researched book that is college-level reading for a liberal arts major (I think). The book is
the second, revised edition of Could It Be B-12? An Epidemic of Misdiagnoses, by Sally M. Pacholok,

(Use the Sjögren's World link to Amazon to support this forum and web site)
http: //www.Sjögrensworld.org/
Go all the way to the bottom and enter the following in the Amazon link:
amazon.com/Could-Be-B12-Epidemic-Misdiagnoses/dp/1884995691

BUT Pacholok doesn't tell us very much about exactly how to make use of the benefits of Vitamin B-12. She did start an active forum on the WrongDiagnosis.com web site, that attracted at first, readers of her book who wanted to discuss more. It was somehow hijacked (completely) by a man who goes/went by the web name Freddd (who in turn got hijacked a few times himself, and migrated to other forums. But he designed a protocol for using B-12, tested the brands, found two brands the seemed to deliver a suitably potent product -- in sublingual form. He has been a sensitive practitioner of what I regard as "N=1" research. That is, repeated observations of one person in a rigorous manner. The experimental group thus is one person, an n of 1. [*Not* your typical evidence-based medicine!]

What is the dosage you find effective?

I don't know that I have found the optimal dose. Followers of Freddd's protocol have several ways to check whether they are taking enough B-12 -- and yes. the cheaper of the two methyl b-12 sublinguals is Jarrow, a brand that I trust.

What I had been taking until recently was 180 mg of B-12 daily, taken sublingually, between the upper teeth and the upper lip. Jarrow Methyl B-12 accounted for !50 mg (150,000 mcg, the tablet strenth), and Source Naturals Dibencozide B-12 for another 30,000 mcg (30 mg). Source Naturals (SN) is an brand I don't trust but have had some reasons to use in conjunction with Jarrow's Methyl B12.

I'm going to stop here for now.

Soycoffee