1. My mB12 protocol
This file is not about the crisis but is about me - or rather: it is
about M.E. and my mB12 protocol. (This file continues and to some small
extent repeats that of September 13, 2013.)
I suppose the present file is only of interest to people with ME/CFS.
And I have linked in quite a few references to relevant Wikipedia
A. The history
of my vitamins taking, and especially B12
This first part only sketches my experiences with supplements, that I
take and have taken since 1984, which is much longer than most.
I have been writing occasionally about B12 since the end of 2010, when
I first learned there was a Dutch supplement with considerably more B12
than I had taken until then.
And I also should say that I have been using "megadoses" - a 50 to a
100 and occasionally a 1000 times of the Recommended Daily Allowance -
of vitamins, especially the B, C, and E vitamins, since 1984, when I
was one of the first to start them in Holland, and in fact had to order
some of them in England, where I had also learned they did give me some
energy in 1983.
That "getting some energy" was the first time in five years
this happened, since I fell ill on 1.1.1979, with Epstein-Barr, except
that it never properly healed, and had been rather difficult ever
Between 1984 and 1988 I read quite a few books about vitamins and
minerals, and also did quite a few experiments with myself, that mostly
had the following results:
At the time I was in my
thirties. From 1988 onwards my health went down again, mostly because
of lack of sleep, because I lived in a place where the mayor (Ed van
Thijn) had his illegal drugsdealers - still flourishing in
2013, still illegal - settle on the bottom floor of the house I
lived in, and also gave them a night terrace in front of the house, as
he also did to three other cafés within 10 to 15 meters from my house.
- I did establish B6
helps me, quite convincingly, but not one of the other vitamins,
- I did establish,
rather convincingly, that in my case - a 6 ft 4 male - more
tended to better, and "more" meant something like 300
milligrams of the basic B-vitamins. (I have no explanation, but this
was the experimental fact, of some rather long experimental series.)
- From 1985 till
1988 I thought I was curing myself, and although that may not have been
true, these were the years when I definitely had the fewest problems,
and could do a lot more than before or after, also without getting more
problems because I did more.
Since 1990, my situation has been worse than the first 10 years
of my disease, probably mostly because of the constant lack of sleep
between 1988 and 1992, all because of the terraces, that made sleeping
quite improbable to quite impossible until well after 2 o'clock in the
night, after which one could expect to be woken up again at 8.15 by the
unloading of metal beer kegs, to supply the cafés and terraces with
more beer. (Nobody cared, that I knew.)
Against this, vitamins and minerals did not help: I slept too little,
for nearly four years. Then again, I kept using them, simply because it
was far more probable than not that they had helped me from 1984-1988,
especially because I had tested it out on myself, for considerably over
a year, and without much faith.  On the other
hand, I had no precise ideas about what helped me most, except for what
I said in the three dotted points above.
But I have been taking vitamins and minerals ever since 1984, albeit in
varying combinations and strengths, and indeed I do look a whole
lot younger than I am, still, now at 63. (I think it is fair to say I
look early fortyish, though I do not feel like it. Also, when I
was fortyish, I looked like I did in my twenties - and I am not lying.)
As I said, I became aware that the one vitamin I had not taken
in megadoses , namely B12, had become available in megadoses in 2010,
and experimented some, but did so initially with just B12. This did not
help much, but by June 2011 I had
found that Freddd's protocol, that
involve large supplements of methyl B12,
and of potassium,
really helped me - for some three to four weeks, when I ran into
problems, that in the end, after reading and some months of
experimenting, were mostly potassium related: I had taken too little.
Having established that, I increased my dosages again in February of
2012, and quickly got fit enough to
buy a new computer, which I had not
been able to do the previous years, since 2007, that also soon became Linux
rather than MS Windows, and then I got from May onwards quite serious
problems with my eyes, that got keratoconjunctivitis
sicca, and got it badly, for I did not sleep properly from June
2012 till the end of August 2013,
simply because I had too much pain in
my eyes to sleep more than 4 to maximally 6 1/2 hours a night.
This was all quite awful, but it did have the great merit of
establishing one thing for me:
While I had ME/CFS all the time, it did not get appreciably
worse, while I did not sleep well for over a year. This was, for me, quite
unexpected: Till then, I had for over 30 years had the consistent
experience that less sleep rather quickly implies more ME/CFS problems.
But not this time, and the only real difference in what I had
been taking were B12 and metafolin.
B. The protocol I use now
I have changed my
mB12 protocol again, quite a while ago, namely to the following. And I
first give the protocol I use, and then my reasons for changing it:
This is the directly usable form of folate, and part of the protocol.
800 mcg may be a little high.
I think - statistics support me - 2 to 3 grams per day make sense.
This turned out, when tested, to have kept me on the safe side.
B6: 100 mg:
I found 25 years ago this helped me.
400 - 800 mg:
This is part of the protocol. I do need at least 400 mg, given the rest.
mB12: 2500 mcg: twice weekly.
I am quite high on B12 when tested, at least after having supplemented
B12, and this seems a safe dose. Note it is methylcobalamin.
vitamin A: 4000 ie:
This is a safe dose (in high amounts vitamin A is poisonous) if you are
This is a normal dose, when supplementing.
vitamin B2: 50 mg:
This is a normal dose, when supplementing.
This is a fairly
normal dose, when supplementing.
creatine: 2 to 4
grams a day
Ca+Mg+Zc+D3: The Recommended Daily Allowance.
This is a
combi-preparation, that I take because of Calcium. The others
are Magnesium, Zinc and vitamin D3.
First, the main reason for
The main reason to change this
quite drastically to the present form is that nearly every supplement I
took other than these has 400 mcg of folic acid - which
is (1) not natural - it is a synthetic vitamin, that requires
2 or 3
conversion steps to be usable in the body (2) probably folic acid is not
digested well by me and (3)
the dose of 400 mcg already is twice the daily recommended
dosage, per one pill.
This means that for many years I have consumed six or eight
(or more) times the daily recommended dosage of folic acid,
that seems to be mostly included to prevent women from giving birth to
babies with spina
biffida, which is something that will not happen to me, since I
Second, what this allowed in experimenting:
Also, getting rid of folic acid allowed me to see whether supplementing
the other B vitamins and other supplements made any difference.
Well, I added the vitamins A, B1, B2 and B5 successively, in 3 day
periods, but did not have any noticeable reaction. I also took now some
10 days of creatine powder, that may have helped a little, but not
much. (This also is an experiment.)
Third, what I avoid:
I do not eat ordinary bread and do not drink milk, for several years
now. The milk I just gave up, in part because I am not a big believer
in modern dairy farming (and yes, I am - or was - a real farmer, with a
real diploma, since 1977); the bread has a good reason: I have had some
gut problems for several years that were related to eating (otherwise)
good bread that was made from wheat, as I noticed myself ca. 2009.
Having given up on bread mostly cured my gut problems, in about half a
year to a year.
Otherwise, I am living and eating more or less normally.
P.S. 10 Oct 2013: I added some references to NL
files. These do not contain bold letters.
That is far longer than any modern medicine gets tested, though
these are tested on more persons.
ME/CFS (that I prefer
to call M.E.: The "/CFS" is added to facilitate search
is a disease I have since 1.1.1979: