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Nederlog


  March 10, 2013

A bit more about my mB12-protocol
Sections
Introduction   
1. A bit more about my mB12 protocol
2
. Caveat
About ME/CFS

Introduction:

I noticed today that I did not write about the mB12-protocol this year, that I first wrote about in Nederlog in Jun 2011, when I reported it helped me. I think it still does, and this is an update, that includes my present approximate protocol.

1. A bit more about my mB12 protocol

You can find my entries about mB12 in my Nederlogs if you search the indexes for 2011 and 2012 with "B12". That was all reasonably well reported, and I have some but not much to add to it.

The very brief summary of my experiences with the protocol is as follows:

I had some small benefits from large doses of sublingual hB12 [1], without further special supplements and also without good theoretical reasons, and learned about two protocols involving B12 plus some further special supplements in 2010-2011 on Phoenix Rising, where there is a large thread about it, and indeed a whole section with quite a few other threads.

In June 2011 I found that the mB12 protocol as proposed by Freddd on Phoenix Rising helped me. The main supplements in it are vitamin mB12, metafolin and potassium. This was quite striking in my case, for about 2 months, after which I started to have problems. My general reaction when taking supplements and having problems is to stop the suppplements, in order to return to what feels like a known base line, and then try to sort out things from there.

What I found over the months September-December 2011 was that I had not used enough potassium, given what other supplements I used, and what I also thought that I found - probably a mistake, I now think - was that the Metafolin made me hazy (brain fogged), for which reason I stopped taking that from August 2011 onwards, being especially intent on finding how much potassium I needed.

The adjusted protocol, with B12 and Potassium but without Metafolin helped some, but not by far as much as what seemed to help me in June and July 2011, that included both. [2]

In February 2012 I added Metafolin again, experimentally, found some improvement with and lack of improvement without, and added Metafolin a year ago, in March 2012, again consistently and then felt consistently better, which enabled me to buy a new computer, which I hadn't been able to do for years, simply lacking the energy and having too much pain; to write a very long piece on psychiatry in April; and to start GNU/Linux.Ubuntu in May. (This was all recorded in various Nederlogs in 2012.)

I also had started to have burning eyes in April, which grew worse in May, and  quite serious in June-July. I again stopped my supplements, to try to find a baseline and some clues about possible causes.

My eyes remained quite bad and quite painful from July through October of 2012, and were eventually, in September, diagnosed with keratoconjunctivitis sicca, as part of Sjoegren's Syndrome. The only things that helped against this were rest in  a darkened room, Duratears, and avoiding looking at white screens or at screens with much white or many light colors.

Meanwhile, I made two quite interesting findings. The first was with the help of my GP: I had very high levels of B12, repeatedly, also after 3 months of taking none of it, and the second, that I find rather amazing given my more than 30 years of experiences with the symptoms of ME/CFS, was that while I consistently slept too little since May-June 2012, because I got woken up by sore eyes, I did not collapse with more severe ME/CFS since I started the mB12+Metafolin+Potassium protocol in March 2012 (together with some other vitamins, of which probably only a strong B supplement and/or strong multivitamin is relevant).

Here it is also noteworthy that I did not take any supplements, except a few times, from August till December 2012, namely to find out whether this would help me with my eye problems, but as I said, I did not collapse, and my eyes slowly grew less worse.

In December 2012 I started again with my ordinary supplements, but without B12, Metafolin and Potassium, and also without fish oils, which I have decided to avoid because there are no good safety reports about this supplement. I improved a little in January 2013, on average, but not much.

During the course of that month I added Metafolin, but again did not find much improvement nor any setback. Late in February, I added a strong multi-B supplement, and registered some improvement, that again got considerably better within a few days when I added mB12 in the beginning of March 2013 - making me feel as I did a year ago in March 2012, apart from my eyes - and I felt then, in 2012, rather a lot better than I had been feeling in quite a few years, and probably better than the last 10 years, that is, since 2002, when I collapsed, from having to do too much.

So... I found repeatedly (at least four different times) that mB12+Metafolin helps me, when added to a strong multivitamin or multiB supplement, and that potassium sometimes seems necessary to feel better. I have had these effects repreatedlty since 2011, and I also repeatedly found that mB12+Metafolin together help rather a lot more than either alone does.

I do not think it is a placebo-effect; I do not think it is a chance effect; and the best explanation in principle is the biochemical theory supplied by the late Rich van Konynenburg.

See links to talks and documents by Richard van Konynenburg.

It also seems to be - in my case, and that is the only one I know well - somewhat of a balancing act: It is best for me, on average, quite consistently, and through various circumstances and conditions, with daily doses of between 5000 and 15000 mcg of sublingual mB12 or aB12, and between 800 and 2000 mcg of Metafolin, also with a strong multivitamin and/or strong multi-B-vitamin supplemented, and with Potassium ready in case of fairly sudden crashes, with 400 - 800 mg usually sufficing to undo that.

Here is my present approximate daily protocol with approximate prices in Amsterdam. Also, I do not take B12 each day, and the same goes for Potassium, and on average I take a little less than stated since some days I skip some supplements, on purpose or by accident:

Supplement
 
Supplier
 
Contents p/p Totals
 
Pills p/d
Price p/p
Cost
p/d
Unit price
Nr
 
methylcobalamin
aka mB12
Jarrow
 
mB12 5 mg (5000 mcg)
5000 mcg    1
 
 0,60
 
   0,60
 35,00
 
 60
 
Dibencozide
aka aB12
Country
Life 
aB12 3000 mcg
 
3000 mcg    1
   or
 none
 0,40
 
   0,40
 
 24,00
 
 60
 

 

 
folic acid 500 mcg 500 mcg
 

 

 

 

 
metafolin
aka folate
Solgar 800 mcg     800
      or
2400 mcg 
   1
   or
   2
 0,28    0,28
    or
   0,46
 28,00  100
Potassium
aka Kalium
AOV
(Dutch) 
200 mg
 
 200 mg
     or
 400 mg 
   1
   or
   2 
 0,16
 
   0,16
     or
   0,32
 16,00
 
 100
 
VM 75
Solgar
Multivitamin with many ingredients
including zinc,
magnesium, vit D, folic acid


   1  0,40
 0,40
 36,00
 90
TOTAL PER DAY              2,18
    or
   1,44 
   

This is rather like what others have reported, and in my case is well supported over 1 1/2 years, with and without these supplements.

2. Caveat

I only reported my experiences, as I did before, and in terms of help as measured by Before-After the above is what helped me most the last 25 years with the disease, and what did so repeatedly, in different circumstances, over the last nearly 3 years that I have experimented with B12 supplements in various forms (hydroxy-B12, methyl-B12 and adenosine [1]), as documented fairly clearly in Nederlog 2012.

And I do qualify as suffering from ME/CFS in terms of the Canada criterions, and according to several medical doctors who either knew me fairly well or knew a lot about ME/CFS, while I was first diagnosed with M.E./F.M. in 1989, having fallen ill with Epstein-Barr virus in January 1979, and never having fully recovered from that.

The most striking thing on balance, because it is wholly unlike my experiences since I fell ill with ME/CFS in January 1979, is that I have not gotten worse ME/CFS since May-June 2012, in spite of having consistently slept far too little since then because of sore eyes (that have improved some since November 2012, but still are troublesome).

That my ME/CFS symptoms did not get a lot worse with too little sleep, as has been the case ever since 1979, I can only explain rationally by the intervening factor of - especially - a large amount of supplementary B12, since March 2012, or earlier, though not earlier than 2010. [3]

Finally, I should like to add that my experiences, data and theories to account for these are considerably better, from a scientific and methodological point of view,  than the experiences, data and theories on which psychiatrists and clinical psychologists base their theories about ME/CFS - for which see my DSM-5 series.

----------------------------------
Notes

[1] There are various forms of B12. If you want to know more, the internet and Nederlog 2012 may help, and the brief explanation here is that hB12 = hydroxy-
co
balamin, mB12 = methy-lcobalamin and adenosin is a third form of B12. A fourth is cyano-cobalamin that one better avoids taking in large doses as supplement. The others have no known dosage of toxicity and seem to be safe supplements.
[2] There are several complicating factors when one experiments with supplements on oneself. One is that one also gets vitamins and minerals from food, and another is that one may falsely convince oneself that something helps, or that it helps more than it does in fact. The best way to work around these complications is to have statistics for quite a while, and in varying circumstances.
[3] As I said, (1) I did not take any supplements from August till November, but (2) my B12 levels in my blood during that period also were abnormally high, if not as high as the first time they were measured, in June. Since (3) I did not sleep well or enough at all from August till November and (4) I did not collapse with worse ME/CFS, it would seem the main relevant factor for this to me rather amazing outcome, is the B12 I took, when I did, which was 5000 mcg mB12 and 3000 mcg aB12 from March till July 20120, mostly but not always daily.


About ME/CF
(that I prefer to call M.E.: The "/CFS" is added to facilitate search machines) which is a disease I have since 1.1.1979:
1. Anthony Komaroff

Ten discoveries about the biology of CFS(pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)


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