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Aug 23, 2011           

                   me+ME: My present B12 protocol - 2


This is an update on My present B12 protocol that dates from five weeks ago.

There is little to add, except that I am still appreciably better than before the protocol; that it goes up and down, as does my ME; that I am a bit better than 5 weeks ago; that I did more the last month than I could before following the protocol; and that adding a good multivitamin - see below - made an appreciable improval: Apparently I was low on something in it. There are a few more remarks at the end.

For more on the background and suppliers see the last link, and the following two that contain the rationale and a lot of information. Both are threads on Phoenix Rising.
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Here is the protocol I presently use, rather like the one recommended in the last link, and set out by the names of the supplement, the supplier of it, the contents per pill (p/p), the price p/p, the cost per day (p/d) for that pill, the unit price of a box, pack, or strip of the supplement, and the number of pills in that unit of that supplement. The prices are approximate, sometimes rounded, in Euros, and without special savings, and as they are in Amsterdam. The links are to items in the Wikipedia, and you are adviced to read them if you want to or do follow the protocol:

Supplement
 
Supplier
 
Contents p/p Totals
 
Pills p/d
 
Price p/p
 
Cost
p/d
 
Unit price
 
Nr
 
hydroxycobalamin
aka hB12
Bloem
 
hB12 10 mg (10.000 mcg)
 
20,000 mcg
 
   2
 
0,30
 
0,60
 
60,00
 
176
 
methylcobalamin
aka mB12
Jarrow
 
mB12 5 mg (5000 mcg)
 
10,000 mcg    2
 
0,55
 
1,10
 
32,50
 
60
 
Dibencozide
aka aB12
Country
Life
aB12 3000 mcg
 
6000 mcg    2
 
0,30
 
0,60
 
21,60
 
60
 

 

 
folic acid 500 mcg 1000 mcg
 

 

 

 

 
metafolin
aka folate
Solgar 800 mcg 800 mcg
 
  1
0,32 0,32  32,00 100
B-Right b-complex Jarrow  
 
  2 0,28 0,56  28,00 100

 

 
B1 25 mg
 
50 mg
 

 

 

 

 

 

 

 
B2 25 mg
 
50 mg
 

 

 

 

 

 

 

 
B3 25 mg
 
50 mg
 

 

 

 

 

 

 

 
B5 100 mg
 
200 mg
 

 

 

 

 

 

 

 
Panthetine 25 mg
 
50 mg
 

 

 

 

 

 

 

 
B6 pyridoxine HCl 25 mg
 
50 mg
 

 

 

 

 

 

 

 
B6 pyridoxal 5-phosphate 10 mg
 
20 mg
 

 

 

 

 

 

 

 
B12 methylcobalamin 100 mcg
 

200 mcg

 

 

 

 

 

 

 
Folic acid folate 400 mcg
 
800 mcg
 

 

 

 

 

 

 

 
Biotin 300 mcg
 
600 mcg
 

 

 

 

 

 

 

 
PABA
Choline
Inositol
 

 

 

 

 

 

 
Potassium
aka Kalium
Vitals
 
80 mg
 
480 mg
 
   4
 
0,20
 
0,80
 
 20,00
 
100
 
Omega 3 Fish oils Toppharm
 
Fish oils 1000 mg
 
3000 mg
 
   3
 
0,10
 
0,30
 
 15,00
 
180
 
    vit E 10 mg 30 mg          
Magnesium + B6
 

 
Mg+B6
 
Mg 400 mg
B6 25 mg
 
  2
 
0,08
 
0,16
 
8,00
 
100
 
Multivitamin Solgar VM 75
vit C
vit D-2
vit E
vit B1
vit B2 (riboflavine)
vit B3 (nicotinamide)
vit B5

vit B6
vit B12 (cyano)
Ca
Mag
Zn
Borium
Cu
Iron
Manganese
Biotin
Folic acid
Inositol
Choline
Iodine
bioflavonoids
Chromium
et al.
250 mg
400 mcg
100 mg
75 mg
92 mg
75 mg
75 mg
75 mg
75 mg
75 mg
75 mcg
64 mg
32 mg
10 mg
0,5 mg
1000 mcg
1,3 mg
1 mg
75 mcg
400 mcg
75 mg
31 mg
150 mcg
25 mg
25 mcg
150 mcg
25 mg
25 mcg
  1 0,60 0,40
 26,00 60
B5
 
Vitals
 
250 mg
 
250 mg
 

 
0,16
 
0,16
 
 16,00
 
100
 
TOTAL PER DAY           5.00
   

Here are remarks on the entries in the above table, that supplement it - and the links in the left column are to Wikipedia-entries, just as I have done in the above table:

Supplement Remarks
hydroxycobalamin
aka hB12
The "aka" is a useful abbreviation. As I described above, I started on this and still have a supply, but it seems Freddd is right - in my experience - that mB12 and aB12 are considerably more effective than hB12. I probably will phase this out.
methylcobalamin
aka mB12
This is the most active form of B12, also in my experience. The form I take takes some 45 minutes to dissolve, and the beneficial effects can be felt within a few hours at most. The form I use seems to be quite good.
Dibencozide
aka aB12
This is another form of B12. I have two brands, and both have some folic acid with them, which is reported to be not such a good idea, since this interferes in various ways. So I will have to see what to do about this.
metafolin
aka folate

 

This is a precursor of folic acid (i.e. one's body uses it to make folic acid from it) and seems better to use when using high doses of B12, and to be required for B12 to work well. Solgar has 400 and 800 mcg pills, the last considerably less expensive per mcg, and Life Extension has an expensive 800 mcg form.
B-Right b-complex This is a good supplement of the B-vitamins, which you do need to supplement. I have taken for many years at least double the amount, so it's not dangerous. The PABA, Choline, and Inositol parts in it I've not specified dosages for are in all or most B-complex supplements I have taken.
Potassium
aka Kalium

 

These are two names for the same substance, and it is needed in considerable doses when taking a lot of B12. One gets some 2 to 4 grams of Potassium per day in food, so half a gram in supplements should go, and maybe I need more, being tall. In any case, I found that taking more than 160 mg made a positive difference for me. This needs more experimenting, and some care.
Omega 3 Fish oils The rationale for this is especially to help one's brain repair one's brain.
Apart from that, these are oils everyone needs and many get too little of in their regular diet.
Magnesium + B6 These are both supplements found to be quite important to many people with ME, as regards energies and muscle spasms, for example. I like this one, because I found empirically B6 does help me. (But others may think differently, and you have to go by your own experiences and knowledge.)
Multivitamin This is to get an all-in supplement, with vits A, B, C, D, E, and a good choice of minerals. The one listed in the above table seems quite good, and made a positive difference to me.
B5
 
This I take because I know from experience this makes me feel a bit more energetic, but is not a part of the B12-protocol

Some remarks that may be helpful
  • I reported what I take factually and why I take it, and can add that for the last six weeks of taking it, I felt consistently better than the foregoing 10 years, and had no major problems with it of any kind (which is no guarantee of anything, but may be nice to know), and also indeed have no known diseases (!) apart from ME/CFS since more than 3 decades. (If you have other diseases, things get a bit different, and the protocol may not be wise to try.)
  • The above is not quite exact, in that I do also have some calcium + D supplement and a few others, but these are not daily regulars, and that I also do take some foods high in potassium - bananas, grape fruits - and also changed the salt I use to a substitute with 2/3 potassium and 1/3 natrium.
  • The multivitamin made a positive difference, and is anyway an important supplement to take, and the one I list and use is good (from such knowledge of supplements and orthomolecular medicine that I have).
  • Several of the ME-symptoms that bothered me have noticeably improved i.e. grown less, apart from my feeling better and more energetic. (But I do not feel like discussing all my symptoms in public. The link B 12 - The hidden story lists many that are B12-related. Note that several of these were unknown to me as B12-related, while I did or do have them.)
  • The protocol I use is not precise: I experiment with it, some days leaving out some, some days adding some, to see what difference it makes, if any, and the present protocol is very probably not the optimum protocol for me (which is a personal thing, and depends on many things, such as one's size - I am tall - and health apart from ME/CFS - I have no known other diseases - and quite a few more things). The present protocol is better than the one listed in July, because it has now a multivitamin included.
  • I have given various details - products, prices, contents, and Wikipedia links to the vitamins and minerals listed because I think it is important to be precise about what one takes, why, what it costs, and what it involves in theory and in terms of practical dangers and possible benefits.
  • If you are new to this: Read more background - e.g. B 12 - The hidden story plus (parts of) the links to Wikipedia lemmas supplied above, and start on a considerably lower dose than I use, and keep records about what you take and how you feel.
  • Apart from B12 I have used similar amounts of supplements for long times (years), without any known damage, problems or setbacks, but then I do not have multiple chemical sensitivity, and I have no known diseases except ME, and am a tall male.


 
P.S. Corrections, if any are necessary, have to be made later.



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 understands 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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