• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

B-12 - The Hidden Story

Messages
45
Fred-my naturopath started me on on 250 mg of methylb12 shot today--it immediately went to my head-made me stutter and felt lightheaded/spacey- (am like that anyway right now and have had the stuttering issues sometimes with no b12)--but definitely gave me an anxious feeling-- when i was relatively well in realtion to where I am ( 2 years ago) i notices the methyl b12 sublinguals would make me anxious so would stop them-- does that make sense? the b12 was red -i hope those are not chemicals! Do I need the other list of supplements listed on the link you posted above-confused on the other supplements you recommend or is b12/a b100 /multi enough to repair nerve damage?

I'm a pretty sensitive person and not sleeping right now-so hopefully this will not make the sleep even worse--

Naturopath wanted me to start at 1X /week shots given how sensitive I am- with the low dose-(she thinks 250 mg is low) and work up from there-

she thought a mult vit was sufficient now for b vitamins and to even add the mult slow given how ill/sensitive I am rightnow- she also wants me to add cod liver oil-again 1 new supplement/week for now-

I'm also on mg malate, ALA. zinc (tested low for zinc), brocolli seed extract (phase i/ii liver), and vitamin d drops4000 is
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd, I want to order TMG from iHerb but I don't know which one. Could you let me know which one you use and what dose I should start with? Thanks.

Lena

HI Lena,

I've used both NOW foods and Jarrow with idenbtical results. Order the smalles one. If you cut them the swell up with moisture rapidly becoming a mess so if you cut themn pout them inb caosules immediatley and store in container wirh dessicant. With your sensitivity I would shoot for 125mg or less.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Fred-my naturopath started me on on 250 mg of methylb12 shot today--it immediately went to my head-made me stutter and felt lightheaded/spacey- (am like that anyway right now and have had the stuttering issues sometimes with no b12)--but definitely gave me an anxious feeling-- when i was relatively well in realtion to where I am ( 2 years ago) i notices the methyl b12 sublinguals would make me anxious so would stop them-- does that make sense? the b12 was red -i hope those are not chemicals! Do I need the other list of supplements listed on the link you posted above-confused on the other supplements you recommend or is b12/a b100 /multi enough to repair nerve damage?
I'm a pretty sensitive person and not sleeping right now-so hopefully this will not make the sleep even worse--

Naturopath wanted me to start at 1X /week shots given how sensitive I am- with the low dose-(she thinks 250 mg is low) and work up from there-

she thought a mult vit was sufficient now for b vitamins and to even add the mult slow given how ill/sensitive I am rightnow- she also wants me to add cod liver oil-again 1 new supplement/week for now-

I'm also on mg malate, ALA. zinc (tested low for zinc), brocolli seed extract (phase i/ii liver), and vitamin d drops4000 is

Hi Herbqueen,

Fred-my naturopath started me on on 250 mg of methylb12 shot to

That is the largest injection I have ever heard of. I think you mean 250mcg, 1/1000 as much. That is equivalent of a 1000mcg sublingual held under the upper lip for 2 hours.

Mb12 does increase nurological funtioning quickly. Clearly you are deficienct as mb12 has no effect at all if a person is not deficient.

Do I need the other list of supplements listed on the link you posted above-confused on the other supplements you recommend or is b12/a b100 /multi enough to repair nerve damage?

The B-100 type supplements are one of the worst possible b-complex types. The balance is way wrong; way too much of some things and not enough of others. B-right is quite superior. The other cofactors mentioned can be vital. The ones I called "critical" cofactors can make a huge difference between working and not working. When mb12 is given and healinbg starts up on the fast track it can exhaust other things very quickly stopping healing abruptly. Getting too low on potassium can be fatal.

Pay attention to what I said on those pages. Neurological healing is the trickiest thing there is. It requires everything it requires to heal other tissues as well as omega3 oils. Metafolin can make a day and night difference. B-complex twice a day can make a huge differeence. Lack of potassium can be fatal. Lack of magnesium and calcium can prevent functioning of mb12. lack of zinc and C and E and A and D can prevent healing. Lack of l-carnitine can prevent mitochondrial function. Lack of adb12 can prevent neurological healing and mitochondrial functioning and muscle healing.


The anxiety some people experience with mb12 indicates the nerves are starting up and energizing. Stopping mb12 stops that process. Going without mb12 for a week can cause the neurological healing to fully reverse by the time you take it again. You need daily mb12 for neurological healing. Symptoms that had gone away start returning within 3 days without mb12. Once a week is just treading water and will NEVER get past startup responses. They will go on indefinitely. With daily mb12 startup responses fade after a few weeks to a few months.
 

Sunday

Senior Member
Messages
733
Any reason not to use creatine with this protocol? Still looking for that possible magic key. Also, acetyl-l-carnitine arginate - any comments on that?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Any reason not to use creatine with this protocol? Still looking for that possible magic key. Also, acetyl-l-carnitine arginate - any comments on that?

Hi Sunday,

I tried Creatine without any definite results. Others may have. I know of nothing against it and it may be helpful for some people with problems at certain stages of ATP processing. As regards acetyl-l-carnitine arginate, I would try it in an alternating pattern, ie two weeks of one then switch to the other. Doing this several times makes any differences easier to spot. I would alternate with l-carnitine fumarate which is specifically effective for some people for transporting fat to mitochondria for Krebs cycle. For me the fumarate form was way way superior, very noticably, to any other.
 

Sunday

Senior Member
Messages
733
Thanks Freddd, I'll try that rotation. I have used both acetyl-l-carnitine and l-carnitine fumurate with no noticeable difference; right now I'm using Jarrow Carnitall in an attempt to see if that might cover more bases. The two-weeks-rotation method sounds like a good way to spot patterns.
 
Messages
2
Hi everyone,
I don't have CFS/ME but am posting here as I guess there are people here who have some knowledge of the methylation cycle and dealing with blocks.

About 5 months ago I was found to be b12 deficient (was deficient for years as an old test showed low levels but gp said it was fine). My only symptoms were a bit of tingling, but since taking the b12 I've been getting broken blood vessels, prominent veins, hyperpigmentated patches all over my face, red bumps and itching. My brother was also found to be deficient (both lifelong vegetarians) and also gets the same symptoms as me, but not as bad, when taking b12. He did 2 histamine tests:

Not taken methylcobalamin for several weeks, no itching - histamine 39 (ref 28-51)
After high doses methylcobalamin for a few days, itching and red bumps - histamine 59.

So I guess me and my brother's symptoms are due to b12 raising our histamine levels. And I do keep reading that b12 and folic acid raise histamine levels, but I don't see how! As I understand it, the methylation cycle breaks down histamine as sam-e methylates it, therefore wouldn't increasing the rate of methylation or removing a block by supplementing with b12 REDUCE histamine levels?

I'm wondering if our cycle is blocked at another point which means our histamine levels become raised, but why would taking b12 block our cycles - we didn't get any of these symptoms before starting on the b12. I don't just itch after taking b12 - I itch all the time. I haven't taken any for a week now, but am still itching. I guess it's due to having high serum b12.

I've also found that my cortisol levels are very low now (less than half the lower end of the range). I don't know what they were before - but I guess that maybe the b12 has affected my adrenal glands in some way.

Any thoughts welcome - I want to get to the bottom of this - want my skin and glands back to normal - I felt and looked so much better when I was deficient!

Taking Jarrows methylcobalamin (from 2 to 4 mg a day), Vit E, Vit C, Vit D, Mag, zinc, multimineral, B complex
 

richvank

Senior Member
Messages
2,732
Hi, pinkladybird.

I think that it's possible that your body might be deficient in some other essential nutrients beside B12, since you have been a lifelong vegetarian. If possible, I think it might be wise to run some lab tests to find out. A couple of possibilities would be the NutraEval panel offered by Genova Diagnostics or the ION profile offered by Metametrix. These are usually available through alternative and complementary physicians and naturopaths, or they can be ordered directly without a doctor's order from www.directlabs.com.

Best regards,

Rich
 
Messages
2
I think that it's possible that your body might be deficient in some other essential nutrients beside B12, since you have been a lifelong vegetarian. Rich

Hi Rich,

Thanks for your reply. I had some vitamin and mineral tests done, and yes I was deficient in a few, in zinc, magnesium and vitamin c. I've been supplementing with high doses of those for a few weeks, so I expect they should Ok now. My brother had different deficiencies than I did - the only one we had in common was zinc - so it's wierd we are getting the same symptoms!
 

xlynx

Senior Member
Messages
163
Location
London, UK
Hi Guys,

I have a question to ask.

I tried the B12 protocol for several months and was very very ill with it and had to stop. I have not had any B12 for the last 3 months and have been improving well, I have only been taking B2, B5.

Today I took a B Complex with 500Micrograms CyanoCobalmin and the following happened after 2 hours:

Bad dizziness close to passing out
Strange nerve sensations
Feeling hot all over
Difficulty in catching my breath
Stinging skin sensation
Brain Fog
Lots of belching
Increased heart rate that has now settled

The symptoms where very severe and intense for several hours. I feel like I have had an allergic reaction to something.

This is why I discontinued B12 previously. What has shocked me is that after so long of not having B12 that 500Micrograms has effected me so badly.

Has anyone else had this or have any idea why this might be happening?

Thanks
 

Sunday

Senior Member
Messages
733
This is what Freddd calls startup and others call detox and I'm not taking sides - but I went through it. If you go earlier in this thread, you will find many others have, too, but I know this thread is long and complex. You might try going through the first three pages, which lay out what you can expect from this protocol and what you need. Or you might search Lena's (her username is winston) posts on this thread, because she went through many of your problems and more and has come out the other side.

Whether it's startup (your nervous system going haywire because it's finally getting something it's needed for so long, maybe a bit like starving people being given food) or detox (in my understanding, the methylation pathway is about clearing toxins, B12 allows this to start to happen again) - whichever one of these it is, the deal is this: you have to get through it to get the benefits of the B12s.

Part of your problem may also be your choice of B12; cyanocobalamin is an inactive form, which means your body has to work hard to process it and it's dumping cyanide as it's being processed, another toxic load for you to deal with.

The B12s recommended for methylation protocol are more active forms. Rich van K swears by hydroxycobalamin; Freddd believes that methylcobalamin combined with adenosylcobalamin are superior.

As Freddd has explained, starting up and stopping B12s means that you just keep hitting the same wall. You have to stick with it, every day, and you probably will need to do gradual dose titration, where adding each dose throws you into a similar tizzy. In order to get past the wall, you pretty much may have to be shoved straight through it. I went through 2 months of maximum symptoms and minimum function. It wasn't fun. But even though I am not functioning as well as I would like, I feel something definitely has changed for the better in my system, and I'm tinkering with the protocol to get even better. Methylation protocol may not be the only thing that we need, but I really feel it's necessary for anything else to work.

That said, there are quite a few who decide they aren't up for the methylation protocol, because it is so rough, who feel it is too damaging. I would read what Rich van K and Freddd have to say before making a decision about this. Rich van K is very good at describing the biochemistry of what's going on, and what's more he does it in clear language. Freddd has the perspective of a systems analyst who's been through the mill himself, and helped a lot of other through his protocol.
 
Messages
18
reasons for startup reactions?

I created a short list of reasons to help me when I get in trouble. I lose perspective when my emotions crash. Knowing the whys helps me from losing hope. Im struggling to understand whats happening. What else can be added?

Reasons for startup responses:
1. consequence of hundreds of stalled processes restarting
2. methylation cycle restarts
* immune system begins to function better die off from underlying chronic infections
* detox system works better toxins mobilized causing unpleasant / intolerable reactions
3. effects as the body strives to achieve equilibrium: rebalancing body and brain chemistry (hormones, neurotransmitters)

joseph
 

aquariusgirl

Senior Member
Messages
1,732
I now carry a little pill container with activated charcoal, EDTA, OSR1`+ fish oil, so that I have sthg to mop up or bind the toxins when they are mobilised.

but i take the others before the charcoal cos charcoal absorbs everything... i take the others like 30 or 45mins before charcoal.
 

Sunday

Senior Member
Messages
733
If it's the B12s that are giving you the trouble, just taking the lozenge out of your mouth will stop the reactions.

And Joseph, I think your list is an excellent idea. You're right, when I'm crashing my emotions blot out a lot, including hope.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Rich,

Thanks for your reply. I had some vitamin and mineral tests done, and yes I was deficient in a few, in zinc, magnesium and vitamin c. I've been supplementing with high doses of those for a few weeks, so I expect they should Ok now. My brother had different deficiencies than I did - the only one we had in common was zinc - so it's wierd we are getting the same symptoms!


Hi Pinkladybird,

Actually it is not strange at all when you think about it. First both of you had the same MOST LIMITING factor, mb12 and/or adb12. The next most common limiting factor is methylfolate. Then you get down to where the additioanl limiting factors come in. For instance magnesium, zinc, C and half a dozen others will put a crimp into cell production, all for different reasons but all have the same effect, healing doesn't happen properly so many of the symptoms will be the same. It's only after you remove all the most common non specific symptoms that you get down to pinpoint differences between different vitamins and minerals.

That is why the BASICS are basic, every body needs them all but are only deficient is some of them which can shift after you have added the current bottleneck and new bottlenecks will be induced. Trying to pinpoint it has to be done over and over becasue it is a moving target that changes as soon as you add the current shortages new ones get induced. I discovered early on that was a loosing strategy as your healing will stall over and over. it might take 5-10 rounds of picking out the "current shortage" until you get all of them becasue taking the current ones will induce new ones. That is why I suggest a shotgun approach rather than a BB gun. Then there are the critical cofactors of which most people will find improved to vastly improved healing with some combination of them. That is why I suggested adding them until they are all being taken and then elliminating just one, then adding it back in and elliminating another etc until you find the ones you can elliminate without stalling healing.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Can anyone please tell me what make the other sublingual b12 was, not the jarrow formulas, it suited some hypersensitive people better. the thread is too long for me to trail back through.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Can anyone please tell me what make the other sublingual b12 was, not the jarrow formulas, it suited some hypersensitive people better. the thread is too long for me to trail back through.

Hi Maryb,

The other 5 star brand is Enzymatic Therapy. Don't forget to take the Country Life Dibencozide (adob12).
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I would like to offer a possible different interpretation of the rollar coaster effect, all those mood shifts. The moods change, in my experience was often accompanied with characteristic thought processes and thoughts. Upon examination I found that many of the things were unprocessed unassimilated occrances from the severely b12 deficienct period. I had an occurance just this morning, suddenly recalling a distressing event from 15 years ago, complete with very sad mood. I recalled it, allowed myself to explore it, processed it and after that the mood lifted as quickly as it came on. That one probably won't be back, once it is processed. If pushed away, rejected, they keep on showing up over and over until one pays attention. The harder and more often they are pushed away and rejected, the harder and more often they hit.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have a reasonably strange story to tell. It has taken 42 years for all the pieces to fall into place.

Some months back somebody mentioned "brown crusts" forming on their skin. It rang a bell for me but there were a lot of missing pieces. I am very fair skinned but tan to a kind of bronze color. At age 20 I had very few freckles on my body. Within a year after starting to have a lot of skin to skin contact with my wife I had 100x as many freckles. I used to kid her that I "caught" freckles from her.

The past few weeks I have worked outside in the sun a lot and my arms tanned. All over my arms are these much lighter colored speckles of depigmentation where all these freckles used to be. Some years back some time after I started taking mb12, and I can't remember just when, almost every freckle on my body developed a soft raised brown crust the size of the freckle. After some weeks to months the soft crusts dried out and fell off leaving white spots all over my body in almost every location I used to have freckles. They are only visible when I get a tan because they tan much less. As far as I can tell there are not any light spots where I didn't have one of these newer freckles. Now I am down to just a few freckles just as I was at 20.

I still have a couple that are in the puffing up stage or peeling, very strange.
 

richvank

Senior Member
Messages
2,732
I have a reasonably strange story to tell. It has taken 42 years for all the pieces to fall into place.

Some months back somebody mentioned "brown crusts" forming on their skin. It rang a bell for me but there were a lot of missing pieces. I am very fair skinned but tan to a kind of bronze color. At age 20 I had very few freckles on my body. Within a year after starting to have a lot of skin to skin contact with my wife I had 100x as many freckles. I used to kid her that I "caught" freckles from her.

The past few weeks I have worked outside in the sun a lot and my arms tanned. All over my arms are these much lighter colored speckles of depigmentation where all these freckles used to be. Some years back some time after I started taking mb12, and I can't remember just when, almost every freckle on my body developed a soft raised brown crust the size of the freckle. After some weeks to months the soft crusts dried out and fell off leaving white spots all over my body in almost every location I used to have freckles. They are only visible when I get a tan because they tan much less. As far as I can tell there are not any light spots where I didn't have one of these newer freckles. Now I am down to just a few freckles just as I was at 20.

I still have a couple that are in the puffing up stage or peeling, very strange.

Hi, freddd.

That's very interesting! It sounds as though the melanocytes have been knocked out where the freckles used to be. This reminds me of what goes on in vitiligo on a larger scale. There is an oxidative stress component in the vitiligo mechanism--hydrogen peroxide is found to be elevated. Given that you had a B12 deficiency, I suspect that your glutathione was depleted as well, and that would have led to oxidative stress.
Perhaps oxidative stress knocked out your melanocytes in those regions. I haven't done a good job of studying this possibility, but that's what occurs to me off the top of my head.

Rich