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  October
8, 2013
me+ME: My mB12 protocol
Sections
Introduction
1. My mB12 protocol
About ME/CFS

Introduction

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 articles.

1. My mB12 protocol

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 since.

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:
  • I did establish B6 helps me, quite convincingly, but not one of the other vitamins, specifically.
  • 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.
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.

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. [1] 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, of metafolin, 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:


metafolin: 800 mcg:
This is the directly usable form of folate, and part of the protocol. 800 mcg may be a little high.
vitamin C: 3 gram:
I think - statistics support me - 2 to 3 grams per day make sense.
vitamin D: 10 mcg:
This turned out, when tested, to have kept me on the safe side.
vitamin B6: 100 mg:
I found 25 years ago this helped me.
kalium: 400 - 800 mg:
This is part of the protocol. I do need at least 400 mg, given the rest.
vitamin 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.

                                         Experimenting:

vitamin A
:
  4000 ie:
This is a safe dose (in high amounts vitamin A is poisonous) if you are otherwisen healthy.
vitamin B1:  100 mg:
This is a normal dose, when supplementing.
vitamin B2:  50 mg:
This is a normal dose, when supplementing.

vitamin B5:  250 mg:
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 changing:

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 am a male.

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.
Note
[1] That is far longer than any modern medicine gets tested, though these are tested on more persons.

About ME/CFS (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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