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B-12 - The Hidden Story

Jigsaw

Senior Member
Messages
420
Location
UK
I would be interested to know of sources of adenosylcobalamin in the UK.

I am currently using Swanson "Activated B-12" which contains 1,000 mcg adenosyl-B12 (but with 1,000 mcg hydroxo-B12 which I don't actually want).



.
Oh, I got mine from somewhere online over Norwich way......I'll check, and post back.
 

Jigsaw

Senior Member
Messages
420
Location
UK

@Pheenix997
B5, pantothenic acid, combines with cholesterol to produce adrenal steroids, end-point of which is cortisol. Cortisol stops you from sleeping. Normal values of daily cortisol are highest first thing in the morning, and cortisol is what wakes us every day.

B5 after 4pm will DEFINITELY stop you from sleeping. I'm wondering if this was in your "Mixed Bs lotion".

Other Bs do not interfere with sleep. Some say B6 does, but I've never experienced insomnia from B6.

B5 stimulation will have you lying exhausted in bed while your mind won't shut up.
 
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Jaz

Messages
16
@Freddd
Hi Fred!
I used to have pretty bad numbness in my feet and learning from your experiences i almost reveresed the damage few years ago.
I got sloppy and it's been awhile since i religiously took them.
I am now experiencing numb patches on my right toe and index finger on my right hand. And my whole righ arm feels like it's asleep.

I met a GP today that said B12 related neuropathy is symmetrical so this can't be it. I really doubt what he said. Was your neuropathy symmetrical by any chance?

/thank u so much in advance
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
@Jaz I take B12 and a multi B and it never helped my neuropathy but was does help quite a lot is benfotiamine which is a form of thiamine(B1)
If you do a search here on PR you will find lots more info about it
Most people take a higher dose than I do for neuropathy. I'm only taking 150mg 2x a day but its really effective
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
Hi Fred!
I used to have pretty bad numbness in my feet and learning from your experiences i almost reveresed the damage few years ago.
I got sloppy and it's been awhile since i religiously took them.
I am now experiencing numb patches on my right toe and index finger on my right hand. And my whole righ arm feels like it's asleep.

I met a GP today that said B12 related neuropathy is symmetrical so this can't be it. I really doubt what he said. Was your neuropathy symmetrical by any chance?

/thank u so much in advance

Hi Jaz,

Sorry to hear of your perhaps relapse. Neuropathies are tricky things. The very first part of the problem is what does "B12 deficiency" actually mean. In the USA it basically depends on getting your serum level appallingly low (170 pg/ml) where serious damage is already likely. It also has a very short list of possible or probable deficiency symptoms. The thing the test absolutely can't tell you is whether a person has sufficiency. A study on peripheral neuropathies was done in the UK maybe a decade or so ago. They did something radical. While they took all the usual tests, admission into the study was only by symptoms and in this study the symptoms were symptoms of peripheral neuropathy, not one or two symptoms, any of them, many of them. And there were no test "endpoints" being aimed for. They were going for percentage of people have an amount of improvement by the end of the period of the study. So the people in the study had an typical serum level of 700+ pg/ml which is defined as so ample that they shouldn't be allowed in the study becasue how could there be improvement? Of those 63% of participants who had improvement, some had levels even higher than 1500 pg/ml to start out.

So in this measurement of serum level the incredibly false assumption is made that there is one number that represents the whole body. Instead there are multiple compartments. For the simplest schema that is worth anything, there are at least 4 compartments All for of them are reasonably independent, some can be high and some low and nobody knows why. For that matter, for functional healing there are at least 8 compartments (epithelial, muscles, with separate nutritional combinations needed for healing tissues in that compartment.
  1. MeCbl - Body
  2. MeCbl - Cerebral spinal fluid and Brain-cord
  3. AdoCbl - Body
  4. AdoCbl - Cerebral spinal fluid and Brain-cord
So for instance, non symmetrical neuropathies with CNS cbl not measured and body serum CBL above 170 pg/ml it could be MS because MS requires it to NOT be B12 deficiency (elimination). It doesn't matter at all that the person can have terribly low cerebral spinal CBL with elevated CSF Homocysteine and it doesn't matter for MS becasue of the wacky ignoring of the CSF CBL deficiency, they don't even define it, as if it doesn't exist, despite being common to FMS, CFS,MS, Parkinsons, SupraNuclear Palsy, ALS and other syndromes and/or diseases.

Healing of nerves does not depend on the damage being caused by B12 and folate deficiencies in the first place. So studies of purposely crushed sciatic nerves (in mice) Only MeCbl increased healing of the damaged nerves and appears to also be able to heal some toxic chemical damage to nerves as well. In the Japanese studies with 2.5mg MeCbl injected into the CSF in the cases caused by diabetes, the symptoms had relief as long as the CSF cbl level stayed high. So far the range of duration goes from under three months to over 4 years. That variation in retention of CSF cbl appears to be the cause of a lot of problems for some of us.

So let's look at some of the reasons now. I have been regaining skin sensation for a couple of years at the same time as my muscles in my feet are going quite numb and painful in various areas. Copper can cause "Subacute Combined Degeneration" type lesions" along with mood disorders and a dozen or so symptoms of failed methylation. These symptoms can be caused by lack of AdoCbl, MeCbl, L-methylfolate, L-carnitine (ALCAR or Fumarate determined genetically it appears), SAM-e, Biotin, d-ribose, other B-vitamins (too much or too little), copper, Boron (probably), manganese (possibly), molybdenum (possibly), and some others (almost certainly). They only respond in the correct order. So if the deadlock quartet are adequatl;y taken, up to a few hundred symptoms have gone away but a few possible methylation failure type symptoms are there chances are it is a trace mineral.

In peripheral neuropathy and the absence of other methylation affected items, a common cause is circulation problems which can cause distal die-off of the nerve for instance. These are often one sides but can certainly happen that it happen on both sides. It's like shingles. They say "it isn't shingles" if it is bi-lateral symmetrical. My partner had bi-lateral symmetrical shingles, twice. Something like a 5% probability, so it is not terribly rare, just not the 95% case. You could use a more thorough neurological exam to determine how much is central and how much is peripheral as it is quite possible to have both at the same kind and to the casual examiner, not a lot of difference. There can be traumatic damage as well as biochemical damage.

I had more bi-lateral symptoms than I had bi-lateral symmetrical symptoms. I also have had one sided damaged nerves including demyelination. 10 years ago I had foot drop before the B12 and folate healed it. Now it has been worsening for several years becasue of copper deficiency, not the same going in, but may end up with the same problems as copper deficiency goes after upper motor neurons. Good luck.
 

Johnmac

Senior Member
Messages
756
Location
Cambodia
Don't know, but several of us here have found that transdermal B12 (both types) absorbs better & is thus more effective.

The scientist who formulated & sells the best brand of transdermal will be able to answer your questions, I'd think:

enquiries AT b12oils.com


If I take both SUBLINGUAL adenosyl-B12 and methyl-B12 at the same time then will they affect each other's absorption?

Here are some details of my situation . . . .

I have something faulty in my metabolism which causes extremely high levels of toxins which cause me to go into mental confusion because a step in the processing of certain proteins in food is defective. My doctor suspects I have an adult variant of Methylmalonic Acidemia. While the docs are still doing tests, I have found that adenosyl-B12 very significantly helps with this problem. Methyl-B12 is helpful but less good.

I want to make sure I get enough adenosyl-B12 and methyl-B12. I take both sublingually. At the moment, I take 3000 mcg adenosyl-B12 in the morning and 100 mcg methyl-B12 in the evening but this can be a hassle.

(I can't handle much hydroxo-B12 without getting very drowsy, so I can't use hydroxo-B12. Cyano-B12 isn't effective enough for me.)

Here is some of my thinking . . . .

I understand that the absorption of SWALLOWED B12 is limited because B12 taking this way saturates various transporter mechanisms.

On the other hand, it is said that only a few percent of sublingual B12 is absorbed but this is not constrained by the limitations swallowed B12 encounters. However, I wonder if sublingual adenosyl-B12 and methyl-B12 affect each other's absorption.

Thank you for any advice.
 

Sundancer

Senior Member
Messages
569
Location
Holland
My first post here,
I'm very glad to have found this forum, this thread and the insights of Fredd on the way to use B12 to get your body bck in shape. I've read the first 15 or so pages, my, what a wealth of information.

I started methylcob end February, a small dose ( 1/2 a mg) and have built it up to 3, and then backed to 2 because side-effects became too much. Some very good things happened
a curtain opened up in my head ( there are still more curtains, but one of them is open now), i find now that my stamina for digesting information has grown ( at first I got an awful PEM, taking about 10 days because I had overdone it...). Grown so much that I'm able to read and digest info in English, hooray!!
hart-frequency lowered from 95 to 80
all kind of heart arrhythmia's seem to be more or less gone
even though still sleeping problems, the hours of sleep I get are restorative!!!! for the first time in years!!!!
I seem to have a little more energy.

the side effects were a comeback of old problems, I already knew that was to expected. I went lower with the dose when sleeping problems became a major problem again and when i got a ( totally new) persistent pain in the back of my legs.

the latter worries me a bit. But reading here it might be a potassium shortage?? I would like some feedback on that.

Happily I just had a blood-check, so next week I'll know what potassium-levels are because the doctor ordered a check on them.

further I have upped the amount of fish-oil and today started with adcob. reading that the chance of getting nasty side-effects were small.

I took about an eight of a a mg, keeping in the mouth for the 3/4 of an hour,that did not do much. So after that I tool another crumb of the same size. Then I got a sort of lightheadedness, not exactly dizzyniss. That feeling stayed for about half an hour after I had swallowed.
but now I find that I may have a little more energy then usual.
So, feels like a good start.

I'll keep you posted, this thread gives me much hope of recovering more. I've come from bedbound to housebound, this may well be the next step to recovery
 

Sundancer

Senior Member
Messages
569
Location
Holland
well, only two days later reporting how it goes.
@Freddd , you're amazing!
The Dutch B12 institute can learn a thing or two from you ( but they probably don't want that...)

I'm now on 2 mg metcob and 1,5 adcob.

the side-effects ( thirst, constipation, dry skin, cracking lips) are probably potassium-related, blood-check gave 4 mmol/l
so I ordered a pot of potassiumpowder. For now I drink more, and use a sole of celtic seasalt for it. Else I would fuck up my elektrolyte-balance even more, tastes good. I think when the potassium arrives I'll mix it with the sole.

the pain in the legs ( backside, from the knee up and downwards) has changed now that I take fatty acids first and take B12 later on ( first the adcob and then the metcob, I think that's the way you said it in the beginning of this thread) I need to find that post and print it. It's not as painful, more like a very strange feeling.

As I don't eat when I get up, i've thought about it. My breakfast often is 3 hours later then coming downstairs. So now I take my fatty acids + vitamin E together with my morningcoffee. ( one has to sin isn't it). The funny thing is, I always took codliver-oil/linseed-oil and lately hemp-oil before breakfast, because it should be good for me. But did not care for the taste. Now it's yummie, really.... I'll add fishoil-capsules as soon as I get them.

any advice about how much?

further I feel a bit woozy, the body is very relaxed, that's so nice! And, sleep is getting better ( i hardly dare to mention it) That has started real fast after I started, but there seems to be an upward line. And it's restorative sleep, oh goodness, what a blessing. I still wake up after some hours but it's less bad, feel less sick too. The last two nights I even slept in about half an hour, instead of one or one and a half hour. Happy, sleeping is soo needed.

One question for you. I want to add minerals, i already did use a lot of vitamins, but not minerals. As I cannot handle zinc ( and only want to try that as the latest, in a very small dose) I wonder what to do with the copper. I tend to take a smallish dose, say a third of the daily advised amount, what do you think?

I'll wait with getting higher with the dose until I've added the potassium, and feel it's being balanced again.

And until after I had my appointment with the bank, I so hope I can borrow money, house is mine. But I can't eat the stones, neither pay sups and food with it.
I do so hope that'l work out, else I don't know how to go further.....:nervous:

after that I'll raise the dose.

Oh, and even though I don't yet really understand what you say about folic acid and cyano-cobalamine.
some years ago, before I crashed but already being very tired, having worse gutproblems etc. I started to take a Bcomplex with folic acid and cyano. Looking back, I'm pretty sure the tingling in my handpalms started after I began to take that, not before. Last weeks that seemed to be worse, and on the underside of my feet too. But your idea that i just feel it better, and that it does not necessarily worsen feels right to me.

but for many years now I take a B with the right forms of vitamins.
 

Sundancer

Senior Member
Messages
569
Location
Holland
oh, adding, I'm itchy, skin itchy overall. it feels like my histamines are on again, ears are producing too much too. So really feels like histamine again.. Not too bad, must not get worse. are there other reasons for skin-itch?
 
Messages
12
@Freddd
I'm wondering if you can help me. I began taking hydroxycobalamin months ago and it initially had a profoundly positive effect. It felt like my muscles were turned on for the first time in a few years, and I could finally do some very basic exercise. However, it didn't last. My initial strong positive reaction to it made me look further into active b12s, etc. and I came across your protocol. I've tried adding methylfolate, but I react poorly to even small amounts (more joint pain, fatigue, brain fog...

I'd like to discuss your protocol in more depth, in particular the 'donut hole folate deficiency,' as maybe I actually need a lot of methylfolate.
 
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Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
oh, adding, I'm itchy, skin itchy overall. it feels like my histamines are on again, ears are producing too much too. So really feels like histamine again.. Not too bad, must not get worse. are there other reasons for skin-itch?

Hi Sundancer,

My two usual itch favorites is something stopping methylation, for some reason. However it is often low Methylfolate when I was at lower doses of methylfolate. Low potassium can do it. Dry skin from many causes. All sorts of skin disorders can cause itching, again lack of methylation for any of many reasons causing different skin problems. Low methylfolate could cause high histamine. See the next post.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
I'm wondering if you can help me. I began taking hydroxycobalamin months ago and it initially had a profoundly positive effect. It felt like my muscles were turned on for the first time in a few years, and I could finally do some very basic exercise. However, it didn't last. My initial strong positive reaction to it made me look further into active b12s, etc. and I came across your protocol. I've tried adding methylfolate, but I react poorly to even small amounts (more joint pain, fatigue, brain fog...

I'd like to discuss your protocol in more depth, in particular the 'donut hole folate deficiency,' as maybe I actually need a lot of methylfolate.

Hi Mathew,

The worst misery of folate deficiency is beneath 4mg/day in my experience. 200mcg was terrible and that is what I started at. I had misunderstandings going on for years. Finally the methylfolate got cheap enough to trial by symptoms without having a cost ceiling and found my zero noticeable folate deficiency symptom and the curve of symptom quantity reduction. Every cell made needs a reaction of MeCbl and L-methylfolate with both nutrients available exactly when needed. Recognizing which changing symptoms are increasing deficiency syndromes versus improving symptoms. Decreasing pain and itching, healing skin lesions of all sorts are good. Worsening lesions of all sorts and rashes, increasing pains, increased misery is worsening deficiency symptoms. They can happen next to each other. Compartments can be from widespread in body to individual cells.

METHYLFOLATE, DEFICIENCY SYMPTOM APPROXIMATE COUNT AND MCV SIZE DOSE RELATION - VERSION 1.1 02/09/18 - Preliminary
N = 1, male, 57-69, 200 pounds (after healing is substantial) , 6'1", Probable CblC disease polymorphisms, only L-methylfolate functions. HyCbl, CyCbl, folic acid, folinic acid, vegetable folates, Glutathione, NAC all cause partial methylation block and/or methyltrap without functioning as B12 or folate.

Additional information from others with some confirmation of others at up to 30+mg. This may be one of those things influenced by genetic polymorphisms. The shape of the curve is similar to some other dose-proportionality curves. Deplin studies at 7.5mg and 15 mg appears to fit right into this curve. USE AT YOUR OWN RISK
For most of my life I have had changes occur each 2 weeks. In the past 13 years it became clear it was a periodic methylfolate deficiency increase every 2 weeks for unknown reasons, or maybe multiple reasons
MCV appears to be proportional to the number of days of sufficient methylfolate, 2.5% to 3% of red cells affected per day, having the spread of sizes would tell a lot. It takes me 15 MG TID to have enough folate every day all day. This hypothesis about linkage of methylfolate and MCV is one of several I have preferred during various portions of since it has become obvious that it is methylfolate that has that linkage, for me, and not any of the usual suspects, B12 or B6, in the amounts I take them

METHYLFOLATE, CU AND MCV SIZE DOSE RELATION - VERSION 1.2 03/11/18 - Preliminary
N=1, 47 years longitudinal-
_________Dose______________________MCV________# of folate symptoms____severity 0-10
1 - folic acid,CyCbl 33 years___________MCV = 99.8_________50>>200________10+_____MeCbl replaced CyCbl after 33 years
2 - folic acid, MeCbl__________________MCV = 99.8____________200_________10+-
3 - folic acid, MeCbl, AdoCbl___________MCV = 99.8____________200___________10+-
4 - 400 mcg MF & folic acid____________MCV = 99.8____________200 ___________10+-
6 - 800 mcg MF & folic acid ___________ MCV = 99.8____________200 ___________10+-
7 - 1600 mcg MF ____________________MCV = 99.8____________150___________10+-
8 - 2.4 mg (800 TID)__________________MCV = 99.5____________100 ___________ 9- estimated start of falling copper symptoms,refeeding syndrome
9 - 4mg/day (800mcg 5 times/day_______MCV = 99______________20 ____________7-
10 - 8mg/day (portions TID)____________MCV = 98______________10 ____________ 5-
11 - 16mg/day (4mg QID)______________MCV = 97.1____________4-5____________ 3-
12 - 30mg/day (15mg BID)_____________MCV = 94.6____________2-3_____________2-
13 - 30mg/day, copper falls to <60_______MCV = 100.7___________2-3_____________7- switched to different form of copper
14 - 30mg/day, copper increases to 66___MCV = 97.x_____________2-3____________ 3-
15 - 30mg/day. CU increases 74________MCV=97.x______________2-3 ____________3-
16 - 45mg/day (15mg TID) Cu to 83_____MCV = 91.7_____________0-2____________0- 1-
17 - 45mg/day (15mg TID) Cu to 67_____MCV = 97______________0-2____________ 0- 1-
 
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Sundancer

Senior Member
Messages
569
Location
Holland
My two usual itch favorites is something stopping methylation, for some reason. However it is often low Methylfolate when I was at lower doses of methylfolate. Low potassium can do it.

this was a typical histamine itch/reaction. And happily is gone by now.

Low potassium can do it.

and that one may have given it an added boost...
Dry skin from many causes.

the dry skin vanished after taking potassium, so that's a clear one ( the thirst, dry eyes etc too. The obstipation took much longer)

again lack of methylation for any of many reasons causing different skin problems. Low methylfolate could cause high histamine. See the next post.

I'll keep that in mind
 
Messages
12
Hi Mathew,

The worst misery of folate deficiency is beneath 4mg/day in my experience. 200mcg was terrible and that is what I started at. I had misunderstandings going on for years. Finally the methylfolate got cheap enough to trial by symptoms without having a cost ceiling and found my zero noticeable folate deficiency symptom and the curve of symptom quantity reduction. Every cell made needs a reaction of MeCbl and L-methylfolate with both nutrients available exactly when needed. Recognizing which changing symptoms are increasing deficiency syndromes versus improving symptoms. Decreasing pain and itching, healing skin lesions of all sorts are good. Worsening lesions of all sorts and rashes, increasing pains, increased misery is worsening deficiency symptoms. They can happen next to each other. Compartments can be from widespread in body to individual cells.

METHYLFOLATE, DEFICIENCY SYMPTOM APPROXIMATE COUNT AND MCV SIZE DOSE RELATION - VERSION 1.1 02/09/18 - Preliminary
N = 1, male, 57-69, 200 pounds (after healing is substantial) , 6'1", Probable CblC disease polymorphisms, only L-methylfolate functions. HyCbl, CyCbl, folic acid, folinic acid, vegetable folates, Glutathione, NAC all cause partial methylation block and/or methyltrap without functioning as B12 or folate.

Additional information from others with some confirmation of others at up to 30+mg. This may be one of those things influenced by genetic polymorphisms. The shape of the curve is similar to some other dose-proportionality curves. Deplin studies at 7.5mg and 15 mg appears to fit right into this curve. USE AT YOUR OWN RISK
For most of my life I have had changes occur each 2 weeks. In the past 13 years it became clear it was a periodic methylfolate deficiency increase every 2 weeks for unknown reasons, or maybe multiple reasons
MCV appears to be proportional to the number of days of sufficient methylfolate, 2.5% to 3% of red cells affected per day, having the spread of sizes would tell a lot. It takes me 15 MG TID to have enough folate every day all day. This hypothesis about linkage of methylfolate and MCV is one of several I have preferred during various portions of since it has become obvious that it is methylfolate that has that linkage, for me, and not any of the usual suspects, B12 or B6, in the amounts I take them

METHYLFOLATE, CU AND MCV SIZE DOSE RELATION - VERSION 1.2 03/11/18 - Preliminary
N=1, 47 years longitudinal-
_________Dose______________________MCV________# of folate symptoms____severity 0-10
1 - folic acid,CyCbl 33 years___________MCV = 99.8_________50>>200________10+_____MeCbl replaced CyCbl after 33 years
2 - folic acid, MeCbl__________________MCV = 99.8____________200_________10+-
3 - folic acid, MeCbl, AdoCbl___________MCV = 99.8____________200___________10+-
4 - 400 mcg MF & folic acid____________MCV = 99.8____________200 ___________10+-
6 - 800 mcg MF & folic acid ___________ MCV = 99.8____________200 ___________10+-
7 - 1600 mcg MF ____________________MCV = 99.8____________150___________10+-
8 - 2.4 mg (800 TID)__________________MCV = 99.5____________100 ___________ 9- estimated start of falling copper symptoms,refeeding syndrome
9 - 4mg/day (800mcg 5 times/day_______MCV = 99______________20 ____________7-
10 - 8mg/day (portions TID)____________MCV = 98______________10 ____________ 5-
11 - 16mg/day (4mg QID)______________MCV = 97.1____________4-5____________ 3-
12 - 30mg/day (15mg BID)_____________MCV = 94.6____________2-3_____________2-
13 - 30mg/day, copper falls to <60_______MCV = 100.7___________2-3_____________7- switched to different form of copper
14 - 30mg/day, copper increases to 66___MCV = 97.x_____________2-3____________ 3-
15 - 30mg/day. CU increases 74________MCV=97.x______________2-3 ____________3-
16 - 45mg/day (15mg TID) Cu to 83_____MCV = 91.7_____________0-2____________0- 1-
17 - 45mg/day (15mg TID) Cu to 67_____MCV = 97______________0-2____________ 0- 1-



Hi Freddd,

Thanks so much for your response. Do you recommend jumping to a high methylfolate dose of something like 4mg, since small amounts cause symptoms?

One other question: Is taking SAM-e a good test to see whether someone even needs methylation support in the first place?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Since we're talking about folate, I'll share my current story. I'd been using 2 Mfolate (1000mcg) 3 times/day for 2-3 years. Along w/ nasal B12. About 3 months ago I became aware of angular chelitis. And some other skin stuff. So I increased folate. I ended up going from 2 up to 4 tablets, 3x/day. (I take them sublingually. A few years ago this meant I needed 1/2 the amount I needed when I swallowed). It took me 3 months to finally resolve the AC. I also increased my D3.

I also had to increase the B12 and B complex. I'd been taking 1/2 Swanson's Activated B complex, AM and midday, so 1 capsule/day. I'm now taking 1 whole cap twice daily, to balance the folate. Don't know why my needs changed, but happily, the increases have worked. cheers.
 
Messages
13
B12 Treatment Plan

FREDDD on B-12 Treatment

I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don't work at all, a few work very well and most are mediocre. Some products are unique. These are for trying to maximize the probability of healing.

Absolutely critical minimums for basic healing.

  • Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
  • Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
  • Solgar Metafolin 800mcg
  • Jarrow B-Right b-complex, 1 capsule twice a day
  • Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.
  • Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.
Essential, usually needs supplementing

  • Zinc - 50 mg
  • Calcium/magnesium supplement
  • D - 3000-5000 IU total
  • A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
  • Vitamin E, NOW Foods Gamma E complex
  • Vitamin C – 4000+mg/day
Possibly Critical Showstopper Cofactors - add after initial stages, any number of these in any combination may be required for maximum effectiveness or in some cases to work at all.

  • SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood
  • TMG - enhances SAM-e, methylb12, l-carnitine
  • L-carnitine fumarate (acetyl might work better for some), works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood
  • Alpha Lipoic Acid - enhances l-carnitine and adenosylb12
  • D-Ribose - enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy

Hi all.

I've suffered from CFS, Fibromyalgia and IBS for almost 15 years now.

I've been to about a dozen consultants, and tried all kinds of treatment including SSRI, SNRI, graded Exercise programs.

I'm currently taking 120mg of Cymbalta. It makes things marginally better, but not enough that I can live anything resembling a normal life.

I started Fredds protocol and am just finished my third week. I had a cold for weeks two and three, so the improvement was not as big as it should have been, but I'm happy that there has been a bit of an improvement.

I'm taking 3mg adenosylb12 and 5mg Methyl B12 every morning under my upper lip.

Luckily, I haven't noticed any side affects since I've started.

I'm taking all the doses from the quote above, but would like to step it up a little. What's my next step? Increasing the adenosylb12 and Methyl B12?

Or adding in the "Possibly Critical Showstopper Cofactors"?

Also, after physical activity like mowing the lawn, I feel aches throughput my joints and get very lethargic. Any thoughts?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi all.

I've suffered from CFS, Fibromyalgia and IBS for almost 15 years now.

I've been to about a dozen consultants, and tried all kinds of treatment including SSRI, SNRI, graded Exercise programs.

I'm currently taking 120mg of Cymbalta. It makes things marginally better, but not enough that I can live anything resembling a normal life.

I started Fredds protocol and am just finished my third week. I had a cold for weeks two and three, so the improvement was not as big as it should have been, but I'm happy that there has been a bit of an improvement.

I'm taking 3mg adenosylb12 and 5mg Methyl B12 every morning under my upper lip.

Luckily, I haven't noticed any side affects since I've started.

I'm taking all the doses from the quote above, but would like to step it up a little. What's my next step? Increasing the adenosylb12 and Methyl B12?

Or adding in the "Possibly Critical Showstopper Cofactors"?

Also, after physical activity like mowing the lawn, I feel aches throughput my joints and get very lethargic. Any thoughts?

Hi Rosboy,

Based on as lot more trials, I would suggest that most people will likely respond better with AdoCbl once or twice a week with a larger dose at the time. The thing is AdoCbl doesn't turn over as fast and if it is in the cell instead of MeCbl there will be a methyltrap failure in that cell, and that is the same problem with CyCbl and HyCbl. However, once a week for a few hours charges upo the mitochondria and that seems to be adequate for most people. My daughter did a comparison and found for her that every day for AdoCbl was best. You can do it a month one way and a month the other and keep alternating until uyou see the difference.

What were are working with is trying to allow our epithelium tissues to heal that we can see of feel as a surrogate for those things we can't see or feel. After a while we each can feel what works and what doesn't. A major piece of optimization might be to trial 10 different MeCbl brands, 1 each week and and find the best one, the one that kicks your socks off if possible. Same kind of difference between types of l-carnitine. When my copper status changed, I had to use a different l-carnitine. Sometimes I find a different brand of l-methylfolate for even a few days can restore the umph of the one I was taking.

Keep track of all the symptoms affected good or bad, as things change daily. Your own patterns will become clear to you and maybe when you need to try a different carnitine for instance, or at TMG to strengthen a certain part of methylation in the ATP cycle.

The latest comprehensive list of affected symptoms that gather during chronic illness or injury and the refeeding syndrome symptoms by nutrient including more trace minerals.

https://www.quora.com/Has-someone-u..._filter__=all&__nsrc__=1&__snid3__=1808215186
 
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Thanks for taking the time to reply Freddd.

I'm going to try and add in AdoCbl for a while, as well as gradually experimenting with l-carnitine and the other possible co factors. I'll report back in action few weeks and let everyone know how I'm going.