5
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Nederlog
  July 28, 2012                  
     
me+ME: Eye problems + mB12 protocol + series mB12 + Carlin

   "Law? What do I care about the law? H'aint I go the power?" (..) the principle  of political science known everywhere now as Vanderbilt's First Law of Government.
(...)
Vanderbilt's Second Law of Government:
"The public be damned."
In totalitarian countries like China and Russia the public is damned by decree, regimentation, police and terror.
In the industrial democracies it is damned by neglect.
And favoritism. 

-- Joseph Heller, Picture this, p. 272 & 273
Links - except last - to the Philosophical Dictionary

Sections

       1. Eye problems
       2. mB12 protocol
       3. Series of mB12-protocol files in Nederlog
       4. More George Carlin

1. Eye problems

I still have eye problems, that were not helped by my computer loosing internet connection yesterday, that finally got resolved through finding that a socalled splitter, that is supposed to allow both my phone and my modem to work at the same time, but that never worked for me anyway, had joined the heavenly choir.

2. mB12 protocol

I wrote about the mB12 protocol that I use now in more or less the same form since March of this year, in the previous Nederlog, and since this seems to be appreciated, here is a little more on it (*)  - and I start with repeating the protocol (links to Wikipedia  items; prices in Euros, rounded off, as  available in Amsterdam):

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)
5,000 mcg    1
 
0,60
 
 0,60
35,00
 
60
 
Dibencozide
aka aB12
Country
Life
 
aB12 3000 mcg
 
3000 mcg    1
 
0,40
 
 0,40
 
24,00
 
60
 

 

 
folic acid 500 mcg 200 mcg
 

 

 

 

 
metafolin
aka folate
Solgar 800 mcg 1600 mcg
 
  2
0,28  0,64  28,00 100
Potassium
aka Kalium
AOV
 
200 mg
 
400 mg
 
   2
 
0,16
 
 0,32
 
 16,00
 
100
 
Omega 3 Fish oils Toppharm
 
Fish oils 1000 mg
 
2000 mg
 
   2
 
0,10
 
 0,20
 
 15,00
 
180
 
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            2,56    

What I want to make a few remarks on - well: twentyfive - is how I arrived at the above, that also tells something about how I approach supplements. I could say a lot more about supplements than I do here and now, for here and now I am mostly concerned with my reasons for using the above.

First, supplements in general: I started using these in 1984 after I had found, through the accident of having a girl friend who had used them - unsuccessfully - to try to solve some ofn her health problems, that these gave me initially a rather strong spurt of energy, of which I had very little, being ill with ME/FM/CFS since 1.1.1979, that then had started as Epstein-Barr aka mononucleosis aka kissing disease. Incidentally, in 1984 I had not even heard about ME/FM: Of these I learned only in the beginning of 1989. (So several tens of medical specialists had effectively missed these explanations, and effectively lied to me, at the very least by falsely suggesting competence or falsely diagnosing myself or my ex, who had the same as I did: An Epstein Barr from January 1979 onwards that never went away, or so it seemed to her and me. As to "falsely
": Because I found in 1989 that both my ex and I had very well described the symptoms of ME, to tens of doctors we saw between 1979 and 1984, notably insisting that what was most problematic for us was what we termed "having to pay later for physical effort": What the Canada Criterions call "PEM" or "PENE".)

Second, the effect of supplements was strongest at the beginning, and tapered off rapidly, and suggests that, at the time, I probably had considerable shortages of various vitamins and minerals. After that I have - somewhere between 1985 and 1988 - for some 18 months kept fairly careful statistics on what supplements I took and how I felt during the day, and established fairly definitely, statistically speaking, that more rather than less of the B-vitamins and a multivitamin helped me, and that vitamin B6 seemed to be especially helpful to me.

Third, none of this cured me, but my condition improved from 1985-1988, after which it collapsed because I had to live at a place where the City of Amsterdam protected drugs dealers and cafe owners, which robbed me of sleep from 1988-1992, and made my condition much worse, which is what it has been ever since.

Fourth, from what I know now (as I only learned about the existence ME/CFS in 1989: At least all specialists I had seen since 1979 should have found that diagnosis - if they had listened, had cared, and had been competent) it is unlikely the supplements I took in the 80-ies would have cured me, but on the statistics I assembled, a good case can be made they helped me - and no: the placebo-effect, anyway a methodologically difficult concept, does not really apply here (if only because I also established that most of what I took had no effect that I could see or feel, and because the effects I did see were correlative and statistically meaningful rather than clear and conclusive without statistics), while yes: I do know about statistics and self-deception, and indeed that was an important reason for me to gather data on my usage and condition through time: I wanted to know whether I was wasting my money on something that was ineffective and expensive, and whether I could establish anything about efficacy of any supplement I took.

Fifth, what I do know a lot about (more than any medical doctor or psychiatrist I know of) is methodology and philosophy of science: It is not that I was favourably inclined towards taking supplements or naive about
self-deception or unlearned about the manifold of possible hypotheses one can dream up about most things or inclined to believe in fashionable things, as supplements were for a time. (In fact, I was initially - in 1984 - quite skeptical about the possibility that supplements would have any felt difference, since it seemed pretty much like alternative medicine which I was and am skeptic about.)

Sixth, I am aware that experimenting on oneself is not often conclusive, and that the sort of data one does gather that way is best regarded as anecdotical evidence - but then, being so methodologically savvy, I also know that (i) it is especially
anecdotical evidence that starts new medical discoveries (that indeed after that discovery require better proof and statistics on considerably more than 1 person) for clearly discoveries have to start somewhere, while (ii) what medical doctors and researchers take pride in calling "clinical data", and consider of prime importance in many cases, in fact is anecdoctical evidence from 1 doctor, or a few doctors in the same practice ("clinic"), about one or a few patients treated in a certain way, for a specific set of complaints.

Seventh, the B-vitamin I did not experiment with systematically by itself (which I did with B1, B2, B3, B5 and B6), which I did by buying these as specific single supplements and then take them in various doses while recording my condition and later - after at least 2 months, usually - doing the statistics,  generally restricted to averages, variances and correlations, is B12, and that because at the time (the 1980ies) there were no high dosage supplements.

Eighth, I did start on this when I heard, late in 2010, that there was a Dutch preparation of hydroxycobalamin (<- Wikipedia) in 10 mg sublingual pills. These clearly helped some, but I took no  other special supplements, though I did supplement with B-vitamins, C, E and a multi-vitamin. The hydoxycobalamin (hB12) did not help much, also not after six months of 40 mg a day, but they did provide sufficient energy for me to organize the obtaining of the basics of Freddd's protocol, that is oriented around methylcobalamin
(<- Wikipedia), aka mB12, rather than hydroxycobalamin (<- Wikipedia), aka hB12, and involves also metafolin and potassium.

Ninth, Freddd had insisted that hB12 is less effective than mB12, and indeed I found this to be the case, for me: Initially, in July 2011, I felt a lot better on an early version of the above protocol, with mB12, with a lot more thrown in to find whether this did make a difference (and what got eliminated since got eliminated because it did not make an appreciable positive difference, while costing money, of which I have very little, after 34 years of dole income, or worse (**)).

Tenth, this is the main reason I did switch to mB12: I found it far more effective for me, also by itself, and indeed the relevant difference seems large: I briefly experimented with 10 mg mB12 a day, but found almost immediately this "wired me up", as the phrase is, to make me have very little sleep, for which reason I switched back to 5 mg: I can't afford not to sleep, but I do like the energy it seems to give. In contrast, 40 mg of hB12 did not provide the lift 5 mg of mB12 gave, and did not by a large margin. (But note that this may be personal: Others may react differently.)

Eleventh, the dibencozide (<- Wikipedia), aka aB12, is there because Freddd had it on his protocol, and I found  over the last year, by leaving it out and adding it back, several times, that I feel better with than without, though indeed the felt difference is not very large.

Twelfth, initially, in July of 2011, the protocol seemed to work very well for me, but I soon found, as just detailed under Tenth, that more than 5 mg mB12 was too much for me, and I also started running into difficulties in August and September of 2011: Less energy, more pain. At the time, I had no good explanation. I then did what I generally have done with supplements: I stopped altogether. (Indeed, that is a general rule for me: To stop with supplements that seem to produce troubles, and then find out whether indeed they do, by adding and leaving them out repeatedly, and it also is a general rule that with supplements I should have no side effects, whether headaches, tiredness, excessive urination or whatever: As far as supplements are concerned, one's body should have the wherewithall to process them unproblematically.)

Thirteenth. The reason to
stop altogether is that there are many possible reasons why things grow wrong; there are incredibly many combinations of things and supplements (look into combinatorics if you want some perspective); and being ill for so long, I do know what I do feel like, and what I can and cannot do, when I am just ill and take no supplements. Once I am back at what feels like a known baseline, I can start adding supplements again.

Fourteenth, which is what I did, and reported on, December 15 2011: I had stopped the protocol, then added part of it back on alternate days, and found that too little potassium seemed part of the problem, while at the time I also distrusted the metafolin + folic acid combination, and therefore left out the former, because the latter is difficult to do without stopping supplements altogether: There is some folic acid in most multivitamins, most vitamin B-supplements, and indeed also it is these days added to various foods, such as bread. (Namely: To prevent spina biffida in neonates. This is  commendable, but it seems wiser to counsel GPs to counsel pregnant women, or women who want to get pregnant, to supplement their diet with folic acid, or indeed metafolin. Also, if it is true 10% of the population can't process folic acid, while the folic acid they do consume interferes also with their bodies' processing metafolin from food, there seems to be a good reason to stop adding folic acid to various standard food stuffs.)

Sixteenth. So I had stopped the metafolin, I think in October, and started experimenting with adding Potassium aka Kalium (<- Wikipedia) in January and February 2012, establishing fairly soon that it was very probable I had used too little and thus gotten into problems, as indeed also had emerged on the patients forums that do report on supplementing B12, either in Freddd's style or in Dr Rick van Konynenburg's style, which was quite helpfui (albeit I find it rather irritating to have to wade through lots of posts by folks who have not the least idea how to report rationally, and also to read hundreds or thousands of posts of anonymous folks, without sites, without backgrounds, apparently all ill educated even if they have some degree, who assert and assert and assert all manner of things as if they have divine insight and are omniscient, which also frees them totally of the need of providing any references whatsoever, or providing any objective ground why one should believe such a person (***).)

Seventeenth. The
potassium took me the longest to get more or less right, experimentally. As I've indicated, I try to establish this kind of things by varying the doses of supplements, indeed often quite radically, because I have no MCS (<- Wikipedia link), and because small changes take far longer to feel and keep track of, and what I found (which, like the rest of my reported findings with the mB12 protocol, is personal and anecdotal evidence much rather than generalizable methods of treatment) is that (i) taking the rest of the above protocol, or one like it, I get into trouble, with too little potassium, that manifests itself as a rapid decline in my condition, if I use 200 mg of potassium or less, with the rest of the protocol in place (for it seems to depend on that as well), which is what others on a protocol like this also found in their cases: Too little potassium causes problems; that (ii) in case of such problems, extra potassium usually removed them rapidly (within 1 to 2 days, or even within a few hours); that (iii) taking more than 600 or 800 mg of potassium seems to lead to considerably more urination, for me, which (iv) gets less again when I take less potassium.

Eighteenth. Again note that I am reporting personal and anecdotical evidence, although it is also true this conforms generally with reports of quite a few others: Especially when supplementing mB12, it seems one needs to be aware that supplements of potassium often seem needed to make it work well, and it seems one needs some experimenting to see what works. (It may help to know that supplementing potassium and supplementing B12, if it is not cyanocobalamin, are generally considered safe, also supposing one has no problems with one's kidneys or liver.)

Nineteenth. In February of 2012 I started added metafolin again, that had appeared to cause problems in September 2011 (but I am not sure), for which reason I had stopped it then. This made me feel better in February, and worse when I stopped it again, and better when I started it again in March, as I reported in April (that includes references to Rick van Konynburg's theory and protocol, that you should read if you want to follow a similar protocol).

Twentieth. Indeed, I think from March 15 onwards, I had hit upon a protocol that so far works best for me, and over 4 months, in which I did a lot I just could not do the previous 4 years, though I am still far from healthy or cured or fit.

Twentyfirst. I have given experimental grounds - that hold in my case: I can offer no good ideas about its generalizability, and it should be considered anecdotical evidence in principle: At best suggestive rather than conclusive or certain (****) - for the first four of the above supplements, including their doses, for me. For the Omega 3 fatty acids I have less evidence, and I take it because (i) it generally seems a good idea, wholly apart from ME/CFS and (ii) I believe that ME/CFS is at least in part neurological, on the basis of various complaints I have, and Omega 3 is supposed to help your brain. But I have no suggestive experimental evidence of its efficacy, if any, for me. And this supplement is not a key ingredient in the protocol I follow, it seems to me, as these are mB12 (rather than hB12 or cB12), metafolin, and potassium.

Twentysecond. For the multivitamin I do have evidence, in my case: I have several times added and removed a multivitamin, and tried several. The reason to remove it is that multi-vitamins generally contain some folic acid, which is a precursor of
metafolin, and some people can't process folic acid well (at least 10% of all adults, it would seem, and I may well be one) and that anyway competes with metafolin. The reasons to add it again are that (i) generally I felt better with it than without it, and (ii) it does make sense to take a multi-vitamin, especially if one takes other supplements.

So.... I have given my experimental reasons, mostly, to use the above supplements, in the above doses, that I almost certainly would not take if I did not have ME/CFS, which is the best explanation in principle for my being ill since 1.1.1979, as also was agreed by at least three medical doctors who had seen me, talked to me, done experiments and research, and knew some about me.

Here are three final points:

Twentythird: Do NOT believe that the above protocol will help you (it may, but you do not know, indeed for several quite good reasons); do NOT believe that you can do a protocol like the above without personally reading up on it, as well as you can (you have to: All sorts of things may be relevant to you and your condition that may not be relevant for others, like me); do NOT believe this protocol is sound science (it is not, for that requires better experimental evidence and better theoretical groundings, but it is good proto-science, in my estimate; it is for many people with ME/CFS the only rational hope to at least improve their condition some; and it is based on sound biochemistry, and altogether much better founded than any psychiatric bullshit I have read about ME/CFS, that generally has no biochemical or scientific foundations at all (****)); and do NOT believe you can follow and benefit from a protocol like the above one without personal experimenting and without reading up on it yourself (it may help you in any case, but the probability of that is much increased if you have a fair scientific idea why this might work for you, and if you do your own experimening, which essentially is adding and removing the same supplement repeatedly in what seems otherwise similar contexts, and trying to note the differences, if any); and finally, if you can't help feeling you have to write about it on a patient forum (which indeed may be helpful to others: it was to me, or rather: some of it was): Do NOT write as if you are a class A genius or a class A moron, but give reasons for your opinions, that is specifically: give real scientific references (links, preferably) or a website with special information or expertise, or at least a Wikipedia link for background, and do NOT believe that things are as you think they are because you think they are, and especially not if you are neither a medical doctor, nor possessed of relevant academic degrees, and also have not done some fairly careful experimenting yourself.

Twentyfourth. Do NOT believe anonymous folks on patients forums who do NOT have the strength of mind and character to maintain their own websites - Laurel of Dreams at stake has severe ME and has a fine website, and I agree, if you were to say so, that she has a fine and clear mind: Maybe that is a conditio sine qua non, for people with ME to have their own sites -  and who do NOT give any credible evidence about their own scientific qualifications: If they don't tell their qualifications, you can safely bet they don't have any, which means they are bullshitting and posturing if they write about medical or psychological or statistical science.  (On ALL sites for patients with ME/CFS the anonymous bullshitters virtually dictate the contents of these forums - but then I agree with the Christians that most folks should end up in hell if they are right about their God, and indeed (anonymous) bullshitting must be very pleasurable and addictive to ordinary men, academically qualified or not.)

Twentyfifth. Do NOT believe you are making a useful contribution on a patient forum if all you add is your opinion without benefit of any scientific references and without any information on what would make you so special others should read your opinions; do NOT write posts about the mB12 protocol if all you add is intellectually and experimentally unsupported opinion: That only makes things more difficult to judge for others. But DO write about the MB12-protocol if you have found some scientific reference others might be helped by, and DO write if you have experimental findings  (based on data that are longer than a few days) that may be of importance to others. (*****)

3. Series of mB12-protocol files in Nederlog

Here is a provisional list on what I wrote in Nederlog about my mB12 protocol, over the last year, starting July 15, 2011 (all filenames - put the cursor on the link - have their publication date in their file titles):


The Philosophy file is included because that's what I think, and there is far too much stupidity, ignorance and negligence among humans and among patients with ME/CFS.  (But then the greatest shits will assure the world confidently, and anonymously if they can, that everybody who says man is a flawed creature is being disrespectful to our fine community. As for me, I side with Jesus: A good whipping is what many deserve, before eternal frying I anyway don't approve of and don't believe in - except that it tells a lot about man's (in)humanity to man: Even the followers of a loving God whose Loving Son has Redeemed them from their Innate Sin, lust ecstatically for seeing their opponents burned alive, and for an eternity of time: Do unto others as you would like to, before they do it to you, right?)

4. More George Carlin

For those who like George Carlin, and/or those who find it hard to write, read or listen to bullshit, morons, cheats, frauds, and the rest of the human-all-too-human flaws the Christian divines and prophets assure all ordinary folks that all ordinary folks suffer from, whereas all ordinary folks, especially Christians, are all pure geniuses, namely at seeing the motes in the eyes of others, there is this

          Telling the truth like it is...

Enjoy!
---------------

Note

(*) I am planning a Nederlog on the series of Nederlogs that are about a single subject, of which this is an example, viz a series about my B12 experiments, and Crisis, Van Gogh, My Generation, May '68, and DSM-5 are examples of five others, not all properly serialized yet with their own internal arrows.

(**) But then I am one of the few Dutchies who is debtfree, and who never had major debts: It seems that currently at least 4 million proud middle class adult Dutchmen are deep into considerable debts - hundreds of thousands of euros or more - because of the mortgages on houses they bought - that they now find they cannot pay or can pay only with difficulties, and that anyway is payment on a property that much declined in market value, so that they cannot rid easily or without major losses either.

(***) There is no cure for stupidity, but there is a cure for ignorance: Folks, if you think your brain and knowledge are good enough for me to loose time reading your ideas: Please, please, please supply at least links to the sites you gleaned your info from, and especially if these are by academically qualified people, with real names. I really am not much helped - and often considerably irritated - by some ignoramus going on and on and on with evident strongly opinionated bullshit without any foundation of any relevant knowledge or degrees, and also with people bothering the few who do have relevant knowledge, such as Freddd and Dr Rich, with endless egoistic questioning about the protocol that they really should have been able to find out themselves. (Indeed, if you can't, my advice is that you do not try a B12 protocol: As is, it is a lot better for everyone if you do have a brain that you also use in a rational way, and if you do know some basic science, and if you do succeed in finding out most things for yourself: They are usually there if you just take a little trouble, rather than start an egoistic email in which you try to force others to go through the trouble of finding things, for you.)

(****) But altogether far more scientific than the sick, sadistic, dishonest, degenerate bullshit about ME/CFS produced by sick shrinks like Wessely, White, Reed, Sharpe etc.

(*****) May I also be kindly saved from all the threads to the effect of "B1 Is Great Fun", "B2 I Love You", "B3 Is Vital For ME", "B5 Saved My Life", "B6 Gives ME Kicks", "B9 Is Just Fine", "B12 Saved My Self" - if so, you are definitely bullshitting and an ignoramus. The honest post would be: "I am lonely and need some human interest": Nothing wrong with that, since you do not pretend to be informed about things you are not informed about.


P.S.     Corrections, if any are necessary, have to be made later.
-- July 29, 2012: Made some corrections and precisifications.


 

As to ME/CFS (that I prefer to call ME):




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
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.  Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
9.
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understa, but nds ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.



See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
 


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