-

Prev-IndexNL-Next

Nederlog

April 25, 2015
me+ME: Update about supplements and condition - April 2015
Sections
Introduction

1. The protocol for April 2015
2. Scientific Confirmation of the B12 protocol
3. On some difficulties one may have with the protocol



Introduction:

This is a Nederlog of Saturday, April 25, 2015. (There also is a crisis log: here.)

This is not a crisis blog but a monthly update on the protocol I follow to try to lessen the effects of having M.E. for the 37th year now (since I was 28).

This Nederlog is a bit longer than former similar Nederlogs, because there now is some medical scientific evidence that the approach I follow does help at least some patients with M.E.: See item 2 below.

Also, this Nederlog is probably only interesting for people with M.E.

1. The protocol for April 2015 

The present update is again rather like the former, but with three changes:


vitamin C: 4 grams:
It still is 4 grams a day.
Calcium+vitamin D+vitamin K:
I still take 2 pills a day, which gives a little less than the daily recommended dose, but see the next:
VM-75: 1 pill a day
This gives many supplements, and the vitamins only in fairly strong doses (75 mg for most B-vitamins).
Potassium: 4 pills a day (or sometimes 5)
This gives 800 mg a day (or 1000 mg)
Metafolin: 2 or 3 pills a day
This gives 2000 or 3000 mcg a day, and is a change.
Vit mB12 infusion: 1 pill a day
This gives 1 mg methylcobalamin a day OR
Vit mB12 5000 mcg: 1/2 pill a day.
The last two are alternated every day.
Vit aB12: 1 pill every other day
This gives 3000 mcg of dibencozide
Vit B6 (as P-5'-P): 1 pill a day
This gives 50 mg of B6, and I started this again because B6
definitely helped me in the past (notably in 1984-1988).



That is it (and NB that "mcg" = "microgram").

I comment only on the differences. Also, before doing that, I add that if you want to know more about me or the protocol I use, you have to turn back and look in the indexes since the end of June of 2011: Searching with "mB12" and/or "me+ME" in the indexes will give you most references. The first I found is from June 30, 2011. This was from not very long after I started with something that slowly evolved to the present protocol. (For more: see item 3, which may be relevant for those who wish to start the protocol.)

The differences compared to previous versions are these three:

(1) I sometimes take some more Potassium, which is experimental, and is usually connected with my also taking more Metafolin.
(2) I took more Metafolin: 2000 mcg seemed to give a slightly better condition than 1600 mcg, and the last week I took 3000 mcg each day, and the same holds.
(3) I stopped taking vitamin E for the moment, because it did not seem to make
a difference.

Perhaps I may also give up the VM-75 and the B6, although these have helped me before. I haven't done so yet, and probably will end the supply I have first (in the coming month).

Incidentally, I also saw that I gave up eating bread in February 2011, because I had had a painful belly for at least 5 previous years, and believed - on the basis of some fairly good evidence - this might be due to the gluten in wheat. Well, this change took about half a year, but since then I have not eaten bread and also have not been feeling my belly. (Some simple things do work!)
2. Scientific Confirmation of the B12 protocol

I am a psychologist (with one of the best M.A.s ever awarded, that was also all done while I was ill with M.E.) and a philosopher of science (with an excellent B.A.), which makes my approach to science and medicine quite different from other people. [1]

There are in fact two similar protocols that try to lessen the effects of M.E.: One by Rick van Konynenburg, which uses hydroxycobalamin as its B12, and one by Freddd, which uses methylcobalamin as its B12. (Both are forms of vitamin B12, which is the most complicated vitamin there is, and which cannot be made by humans, but needs to come from food - and/or supplements.)

Rick van Konynenburg, who was a Ph.D. in a physical subject, wrote some quite good pdf-files on M.E. and on his protocol, which I read, and also lectured on it in a Swedish university, but he unfortunately died in September 2012.

Freddd (I use the name he uses on Phoenix Rising Forums) insisted mB12 is better than hB12, and also recommended higher doses of other supplements, and wrote quite a bit on Phoenix Rising, of which I have read a fair amount.

The main reasons why I sided with Fredd in 2011 were that I had been ill 33 years then, and had been mostly miserable from 1994-2010 (after not sleeping enough for nearly four years); that I had used both hB12 and mB12, and had found that
mB12 did do more for me; that I have been using vitamin supplements since
1984, and knew more or less what to expect with most supplements I took; and that I wanted some positive differences sooner rather than later.

But for me one main criticism I had on both protocols was that there was no independent scientific confirmation of either protocol. (Incidentally, this is not
a criticism of Rick or Freddd: it is a criticism of "the medical community".)

Now there is independent scientific confirmation of the main ideas behind either protocol: Two days ago the following was published in PLOS:

Response to Vitamin B12 and Folic Acid in Myalgic Encephalomyelitis and Fibromyalgia

This is a medical study conducted by Björn Regland, Sara Forsmark, Lena Halaouate, Michael Matousek, Birgitta Peilot, Olof Zachrisson, and Carl-Gerhard Gottfries.

The study seems to have been done at the Gottfries clinic which  is "affiliated with Institute of Neuroscience and Physiology, Gothenburg University, Gothenburg,Sweden".

Here is the summary:

Background

Patients with myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) may respond most favorably to frequent vitamin B12 injections, in vital combination with oral folic acid. However, there is no established algorithm for individualized optimal dosages, and rate of improvement may differ considerably between responders.

Objective

To evaluate clinical data from patients with ME, with or without fibromyalgia, who had been on B12 injections at least once a week for six months and up to several years.

Methods

38 patients were included in a cross-sectional survey. Based on a validated observer’s rating scale, they were divided into Good (n = 15) and Mild (n = 23) responders, and the two groups were compared from various clinical aspects.

Results

Good responders had used significantly more frequent injections (p<0.03) and higher doses of B12 (p<0.03) for a longer time (p<0.0005), higher daily amounts of oral folic acid (p<0.003) in good relation with the individual MTHFR genotype, more often thyroid hormones (p<0.02), and no strong analgesics at all, while 70% of Mild responders (p<0.0005) used analgesics such as opioids, duloxetine or pregabalin on a daily basis. In addition to ME, the higher number of patients with fibromyalgia among Mild responders was bordering on significance (p<0.09). Good responders rated themselves as “very much” or “much” improved, while Mild responders rated “much” or “minimally” improved.

Conclusions

Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia. It’s important to be alert on co-existing thyroid dysfunction, and we suspect a risk of counteracting interference between B12/folic acid and certain opioid analgesics and other drugs that have to be demethylated as part of their metabolism. These issues should be considered when controlled trials for ME and fibromyalgia are to be designed.

I say. There is a lot more in the original, which you can download by clicking on the above link. I will not discuss this, but I will say some about the summary.

First, I have M.E./F.M. according to at least 4 different medical doctors, and the first diagnosis was in 1989, when I also first learned of the existence of M.E. - for there was no internet then: Thus it took 10 years to hear about it, for none of the ca. 30 "medical specialists" that my ex-wife, who also had the disease, and I had seen since 1979 by then seems even to have heard of it, in spite of the fact that it had been first described in medical journals, as M.E., in the middle 1960ies (which means most of them effectively lied to us: They should have known or at least found this). Also, in my case the "F.M." (for fibromyalgia) was added by my excellent G.P. on the - correct - ground that I had had considerable pain for many years. (And I then did not know what fibromyalgia is.)

Second, about Background: In fact, they have tested mostly people who injected hB12 (hydroxycobalamin) and supplemented with folic acid, which is most like Rick Van Konynenburg's approach. There are difficulties here (I think mB12 is more effective, and folic acid should be replaced by metafolin) but this is a first study, and it is close enough to Rick van Konynenburg's protocol.
[2]

Third, about Objective: The Objective is fine. As for me: I took meanwhile around three years of large oral doses of mB12 supplemented with metafolin, and did better on it since 2012 then I have done since 1994. [3]

Fourth, about Methods: 38 patients is statistically significant (and also is better than is used in many medical tests). But I have a question: What about non- responders?  I suppose the answer is that these stopped much sooner, which also explains why those that were tested all had some positive response.

Fifth, about Results: That the best results came with high doses of B12 and high doses of folic acid rhymes with my results. Also, although I am a very likely candidate for hypothyroidism, this was never tested by any Dutch medical person (which is one of quite a few reasons why I have given up on Dutch medicine: If you cannot help me for 37 years with establishing anything, either you are grossly incompetent or you are a liar interested in a high status high income job - and no: this doesn't hold for all medical doctors but it is true of most of the 40 or so "medical specialists" that I and my ex-wife have seen, and that is more than enough for the statistical validity of my conclusion).

Also, I would say my improvements are best described as "some improvement", that is, more than "minimally" but less than "much". And I've never used analgesics, other than occasional aspirines or ibuprofen, which hardly count, and
also am still using relatively small amounts of mB12 and Metafolin and Potassium (for those trying the protocol).

Sixth, about Conclusions: I agree, and only add that in my own experience and also that of others, it seems likely that there are more problems than just thyroid dysfunction. For these, see the next item.

3. On some difficulties one may have with the protocol

One of the major difficulties of either of the two protocols (Rick's and Freddd's) is that it is quite difficult to take the right amounts of B12 and other supplements, and also that if one does not hit somewhat appropriate amounts, it is likely that one gets problems rather soon (which generally manifested themselves in my case as muscle aches and tiredness, and which generally disappeared again when
I took less or no supplements, but which were not pleasant while they lasted).

This happened to me and to quite a few others. Thus, the first report I wrote on B12, that of
June 30, 2011, was quite optimistic after I had had considerable improvements in just a few days, but then soon afterward I ran into problems, which in the end turned out to be that I had not used enough potassium.

When I had established that, it was meanwhile 2012, and I picked up again considerably, only to be floored again in June 2012 by quite painful "dry eyes", which stopped me from taking any supplements for some 4 to 5 months. I did some experimenting and adjusting, and then all of 2014 was better than any year since 1994, but this year (2015) there was so far little progress, though also hardly any setback.

Anyway - I did lately look again at Phoenix Rising (which I mostly avoid, to tell the truth) and found some reasonable advice for people taking the protocol:
This is by Sheclimber. I think this guide - from January 2015 - is the best I saw for those interested in trying out freddd's protocol. I have three brief remarks:

1. It will probably take a fairly long time to find a combination of supplements
(especially: mB12, metafolin and potassium) that will work and will not crash
you. I did succeed, but it took me at least a year (of offs and ons).
2. I never did get even close to the dosages Freddd recommends (which are
pretty extreme).
3. I did not take all recommended supplements, and I have given up on fish oils (but I regularly eat fish).

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

[1] This I learned in 2010 on Phoenix Rising - a site for persons with M.E. - where thousands of anonymous persons discuss "(medical) science" and "psychology" and "methodology" while knowing essentially nothing, and also while refusing to admit this. I am sorry, but to me that spells bullshit, also in great and usually very ill-written doses. (I've left Phoenix Rising in May 2010, and have not read much of it since 2011. And I don't mind people writing what they please; I do mind being controverted endlessly by anonymous utter idiots with pretensions on knowledge they lie about.)

[2] In fact Rick van Konynenburg lectured in Gothenburg on his theory, so it may well be that this is a reaction to his lectures (which were interesting and clear: I did see the videos), although I do not know this.

[3] The reason I stopped for a while was that I was struck by a quite bad and quite painful case of "dry eyes", that also caused that I did not sleep enough
from June 2012 till September 2013, simply because of pain in my eyes. One
quite unexpected result is that the M.E. did not get worse, for which the
only explanation I could think of is the large doses of mB12 I took (which made
the level of mB12 in my blood so high that my G.P. could not measure it). And
it is pleasant to have - at long last - some medical science that supports me.


       home - index - summaries - mail