Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Friday, February 17, 2012

Plunging into a B12 protocol today

Anyone who follows the Phoenix Rising (PR) message knows about the competing B12 protocols touted by a couple of doctors/researchers who post regularly on the site.  For those that don't know, here's the 2 cent version:

The $0.02 B12 Explanation   

Several years ago, an autism researcher, Dr. Yasko, developed an autism treatment that involved repairing the body's methylation cycle.  The methylation cycle is a chemical process that is responsible for detoxifying the body.  Apparently, studies show that people with various chronic conditions, including ME/CFS, have a malfunctioning methylation cycle.  (Believe it or not, it somehow relates to autism too.) 

Later, a Dr. Rich Van Konynenburg, developed a simplified version of Dr. Yasko's treatment and tested it on a group of volunteer ME/CFS patients.  Like other ME/CFS treatments, it worked for some and not for others.  For a few, it worked extremely well, to the point where they claim to be fully recovered.  At present, Dr. Van Konynenberg frequently posts on Phoenix Rising, answering questions from posters who are interested in trying the protocol.

Another PR poster with a medical/scientific background (known by the handle "Fredd") proposes an alternative protocol that focuses on active forms of vitamin B12 and folate.  Apparently, there are both inactive and active forms of vitamin B12 and folate.  The body converts the inactive forms into active forms, but research shows that some people's bodies don't effectively convert the inactive forms to the active forms.  So Fredd favors taking the active forms to, sort of, sidestep any conversion problems.

On the other hand, according to Dr. Van Konynenburg, the body's conversion process acts as a sort of natural damn, helping control adverse "start-up reactions" that could result from a sudden flood of B12.  It seems, however, that both protocols are known to produce adverse start-up reactions, to the point where many people can't complete the protocols.  In short, it usually gets worse before it gets better.

My First Choice

For weeks, I couldn't decide which protocol to try, or rather, to try first.  Then I began leaning towards Dr. Van Konynenberg's protocol.  Dr. Van Konynenburg's credentials and findings are more widely available on the internet (for example, here, and here), and it seemed like the safe choice. While it's certainly clear that Fredd knows his biochemistry, I don't have the time to look through all of his 2,400+ posts to learn more about his credentials, if they are even available.  BUT, I ultimately chose to try Fredd's active B12 protocol because, after reading hundreds of his posts on PR, I was finally convinced by his arguments. 

It's difficult for me to pinpoint exactly what Fredd wrote to change my mind.  It was probably the collective effect of reading hundreds of posts.  I did find it interesting that Fredd seems to have identified a problem with using the inactive form of folate, which, it seems, Dr. Van Konynenburg later adopted.  Fredd also emphatically warned of potassium deficiency when supplementing vitamin B12, which has already proved important for me.  

In the end, we (the ME/CFS community) are fortunate to have both of these highly intelligent individuals working to help us.  I'd like to thank them both, and, should either of you come across this page (unlikely), please let me know if I have accidentally misrepresented your views above and I'll be happy to correct it.  

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