Active B12 Protocol Basics

[Biarritz13]

@stridor

Thank you for your reply! I think I get it a little bit more, what I lack is how to add up according to symptoms because from what I read and see, only people who take huge amounts, benefit from methylation...

 

[stridor]

@Theodore
I would be careful extrapolating too much from the data that you gather here. There are many people who benefit from augmenting the pathway who do not have CFS and therefore are not here.
As well, people with COMT really need to approach things conservatively.

Think of the people here as being the hard cases. We, for a variety of reasons, many unknown, have sometimes needed to take amounts of vitamins that sometimes don't even make sense to us. But you can't argue with results.

I am C677T and started with 1mg. I don't even remember now why I opened the 1st cap and poured it into the buccal pouch but the result only took a few minutes and it halved the amount of brain-fog that I have. I do not regulate the amount I take. It is pretty much automatic but I would say that I am taking about a third of what I was a year ago.

The mB12 I just kept taking more and more until the benefits stopped. Then I doubled that for about 18 mths to maximize recovery. I take 2 needles daily which is more than some but about 1/15 of what Freddd was taking at the time. I have tried 4 times to cut down. My wife spotted the trouble before I did this last time. Mood, patience and energy.

So you don't add anything up according to symptoms. You start low and build the doses like I did. Start with the mB12 for a week maybe and then work in the folate. Let things settle. You might not feel so hot for a few days. Then when the boat stops rocking for a while add the adeno and so on.

 

[Biarritz13]

I would be careful extrapolating too much from the data that you gather here. There are many people who benefit from augmenting the pathway who do not have CFS and therefore are not here.
As well, people with COMT really need to approach things conservatively.

Do you think people with MAO need too?

So you don't add anything up according to symptoms. You start low and build the doses like I did. Start with the mB12 for a week maybe and then work in the folate. Let things settle. You might not feel so hot for a few days. Then when the boat stops rocking for a while add the adeno and so on.

That's what I am doing with the mB12 and when I do so, I feel some dizziness that last up 30 minutes.
I'll add methylfolate soon.

Thank you for your time stridor

 

[heyitisjustin]

] Many of us needed to have niacin on hand in the early days until we sorted things out. It will deal with extra methyl groups. I had a need of this from time to time until I went from one needle a day to two.

I've read about using niacin to determine whether your over/under methylated. Historically the same niacin dose always produced a big flush. Now, even with doubling, the dose only causes a slight flush. The flush I had seemed to cause my mind to calm some and that doesn't seem to be happening anymore. I've cut back my methylfolate, but it still seems like no flush/calm. I'm not sure what to make of this. Should I cut back further? Try reducing TMG/LCF?

 

[ahmo]

@Theodore forgive my memory lapses, have you tried FMN? Seems especially good for MAO snps. See my experience in my signature. (unless you and I have already had this conversation)

 

[Biarritz13]

@Theodore forgive my memory lapses, have you tried FMN? Seems especially good for MAO snps. See my experience in my signature. (unless you and I have already had this conversation)

I didn't! I am going to read your experience! Thanks

 

[Biarritz13]

I forgot to ask, I see a lot of you take huge amount of potassium so I wonder how do you make the difference between hypokalemia and hyperkalemia? Thank you.

 

[garyfritz]

Personally, I take a small amount of potassium -- less per day than you'd get from a banana. I get much more potassium from food than I do from pills, so I'm not at all worried about hyperkalemia. I take more if my calves start to cramp or my muscles get twitchy/tremble-y, i.e. if I start showing symptoms of mild hypokalemia.

 

[Biarritz13]

Interesting, I didn't know that it's possible to manage potassium mostly with food. Of course everyone is different...Thank you gary!

 

[repguy]

Hi Friends,

Not really new to the forum, but brand new to posting. PLEASE forgive if I'm in a wrong place. I've got lots of information about my situation and have learned tons here, but I'm in too much pain to do much right now.

Real short story: I'm having some sort of paradox, addictive-type reaction to Cortef/hydrocortisone. I was down to only 10 mgs a day (2- 5 mg divided doses) and working on my methylation. Great gains were being made in the last year.

Suddenly, after several severe stress episodes, systemic pain (which had been doing much better for months) returned. I tried a SMALL increase in cortisol to compensate for the additional stress, but the trap was set. A "little" more helps at first, then the "system" demands more. The result is a paradox where the Cortef is the only thing that helps the agonizing pain, but it seems to be the CAUSE of the pain.

I do have CFS (and a bunch of other stuff, of course). I'm C677T+-, COMT ++ (the combination least tolerant of methyl groups), lots of MTR and MTRR ++ issues, etc. I'll work on my sig thingie and get my SNPs in the system.

If this should be posted elsewhere, please advise and I thank you all for your forebearance. I'm in desperate pain and need help immediately. I don't know how I'll get through the weekend.

Thank you so kindly!

 

[Kathevans]

@repguy I'm sorry to hear you're in so much pain. Up front I have to say that I have NO EXPERIENCE with Cortef, but I have had some success with my pain issues, first from taking MeB12 which I titrated up to about 4-5,000 mcg over some months (even as I increased Folate amounts to about 1600mcg). I've also just added AdenosylB12 at a somewhat low dose of 750mcg, but it has provided a lot of relief of tendon pain, I believe.

I have many of the snps you mention--have a look at my signature. Some say that magnesium helps the COMT++, and I do take about 600mg a day or so of mag citrate, but the truth is I still can feel a bit mind-hyper on methyl donors. I've tried to address MAO with B2 on more than one occasion, but have not met with the amazing success that some have.

For me it's been a slog--but the payoff has been an overall lessening of pain. And I do hope for more success as I persist in my patient fiddling...

All the best to you!

 

[repguy]

Firstly, THANK YOU very much for taking time to respond. I deeply appreciate the kindness.

I made some amazing gains in the last year on pretty high doses of mfolate, b6, the b12's, etc. I started to get my life back --- pain went away, supplemental cortisol dropped from 20 mgs/day to 10, more energy. BUT the COMT situation had me in wild emotional swings. I didn't just get irritable --- I'd get psychotic on too much methyl -- crazy angry, raging --- and on too little, suicidal depression, crying fits, despair, hopelessness. Yet my body demands specifically more methyl (or so it seems), so the line between too much and too little is razor thin. Bear in mind, too, that I first started with symptoms in 1977 --- I'm 56 now --- so my body has been through the mill. It truly is rocket science to balance it all out.

Along with the b's I do take mag citrate, l-theanine, trace minerals, probiotics, lithium, etc --- the usual suspects I'm working with an ND out of Richmond Natural Medicine. It's been tough going. On Monday I'm going to see an Integrative MD here in Maryland at the ND's insistence and referral. The pain is agonizing and must get under control.

Seems it's a journey that won't end, but I sure hope we find a place where we can better enjoy the view along the way.

Best wishes, Kathevans.

 

[Kathevans]

@repguy Oh my goodness. So long ago. I started with symptoms--in a bad way, that is, the knocked down way, after a period of stress and a bout of antibiotics in 1996, I think it was. But your description of your reaction to methyls is very like mine. At least the down side of not having enough, the suicidal thoughts, weepiness, hopelessness. What's amazing is that these feelings come on now on the second day I increase my folate, and within three or four hours of holding my morning dose to the preceding day's.

I'm sure there are people who have powered up. I keep thinking that if I get my B2 right---or possibly something else--the ADO B12, or the MeB12, say, that I'll be calm enough to move up and onward with the folate. I may be at my upper limit now. Who knows? And I didn't have a particularly good day.

Is it just the COMP++? I thought it was the MAO++ that was causing the weird mental and physical response to the methyls. I know there are those who've dealt with these. I'm going to have to try and find them...

In any case, if you've got your genetic results, here's a thread begun by @Valentijn that could serve as a starting place. She understands the genetic implications better than most of us...:http://forums.phoenixrising.me/index.php?threads/interesting-comt-variations.24672/

 

[stridor]

I've read about using niacin to determine whether your over/under methylated. Historically the same niacin dose always produced a big flush. Now, even with doubling, the dose only causes a slight flush. The flush I had seemed to cause my mind to calm some and that doesn't seem to be happening anymore. I've cut back my methylfolate, but it still seems like no flush/calm. I'm not sure what to make of this. Should I cut back further? Try reducing TMG/LCF?

Niacin will not cause the same degree of flushing after a while. This seems to be a universal adaptation. Whether as a response to the flush or some other mechanism, niacin seems to release endorphins. This makes people relaxed and lots start to look forward to the next dose. I don't think that there is any reason to intervene.

 

[repguy]

Guess that brings us back to the topic of this thread, Kathevans I haven't found any relief for my cortisol paradox, so I'm in too much pain to do much here. The short version (as best I understand it): we do have a lot of the same or similar polymorphisms. The C677t+- means we don't do too terrible metabolizing folate, so maybe that doesn't need to be so high (see high folate thread and sueami's comments). Could a paradoxical folate deficiency happen like Freddd says? Seems so (is that what I'm going through with my cortisol paradox??).

Meanwhile (and to the topic of this thread), with MTR and MTRR problems like we have, the body needs a whole bunch of B12 --- NOT necessarily just methyl B12 --- so we need to use a lot of adeno and hydroxo (according to some like Yasko). When we add in the COMT piece with the MAO A and a few others, there's really no work around for the fact that we just CAN NOT handle all the methyl stuff, at least I've never seen one --- after many hours of study --- that adequately addresses our situation. Many have called it the "foot on the gas, foot on the brake" situation, and it really is.

My body makes great gains on more methyl folate and lots of b12, but my emotional state gets DANGEROUS when I push. I saw a post somewhere which suggested that with the COMT combos, you just have to ignore the "bitchiness" and irritability and get well. If I only got irritable and even "bitchy," that would be one thing, but I DON'T. I get INSANE, so balance is a literal matter of sanity.

I've had NO quality of life for the last 20 years or so. I had some great gains in my quality of life over the last year until this recent crash. I'm pretty desperate to get back to those gains, ya know?

 

[heyitisjustin]

Niacin will not cause the same degree of flushing after a while. This seems to be a universal adaptation. Whether as a response to the flush or some other mechanism, niacin seems to release endorphins. This makes people relaxed and lots start to look forward to the next dose. I don't think that there is any reason to intervene.

The itching/calm held steady for months. Then I started probiotics. In the course of the next week the flush completely went away. I took this to indicate I was much more methylated due to better bacteria and lowered my dosages.
Do you think I misinterpreted the degree of methylation?

 

[Kathevans]

@repguy I've been having a conversation with the owner of the B-12 Oils company in Australia, Gary, as have many other folks on this thread, and he has an interesting take on some of our issues. He says that what we need is often B2 and MeB12 (early testing I had done over a year ago actually showed this to be true) and there are those who are experimenting with less folate and more B2 as a complement to the B-12 and are doing quite well.

My question, as yours would be, is how much pain have they been experiencing and have these supplements alone helped reduce it. Over the last month I spent a lot of time reading the B2 I Love You thread [forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209] and I know that Asklipia, in particular, had a reduction of pain from the B2 therapy.

Check out recent posts by @garyfritz and @Johnmac for this particular conversation. I believe it's spread over two threads.

For each of us it's trial and error--along with some trial and success. If we are lucky.

At the moment I'm trying to figure out which forms of magnesium might best support the COMT++ gene--I have both malate and citrate. And I'm looking for a low-dose B2 to begin to titrate up relatively small amounts to the 20 mg I'm already taking--found Thorne has a capsule with only 35.5 mg, so relatively easily divided--if somewhat pricey.

Keep truckin'.

 

[stridor]

The itching/calm held steady for months. Then I started probiotics. In the course of the next week the flush completely went away. I took this to indicate I was much more methylated due to better bacteria and lowered my dosages.
Do you think I misinterpreted the degree of methylation?

I'm sorry but I don't quite follow what you are saying.
You took probiotics and when the flushing stopped you cut back on niacin because you thought that you were better methylated? Are you thinking that niacin is a methyl donor?

In 1995, two ideas intersected and my life changed for the worse. I was told that I had high cholesterol. I was already eating low fat and so I took my diet to extremes - I was a bit crazy with OCD tendencies back then. The other thing was that the Dr put me on high dose niacin which was a treatment for high cholesterol.

Two years later, I had my first hospitalization for Bipolar Disorder. I don't think that this was a coincidence. The brain needs fat and an over-oxidized brain bordering on Bipolar needs more, not less. And with my genetics taking high dose niacin threw a spanner into the works. My methylation system was already crippled from mercury.

I am not a fan of niacin. I used it to help in the early days of Freddd's protocol until I figured out that I needed 2 needles of B12 a day. (I also inject the RDA of B1, B2 B5 and B6 daily. I take a lot of B2 on top of this, some B6 intermittently, and biotin).

 

[Kathevans]

The other thing was that the Dr put me on high dose niacin which was a treatment for high cholesterol.

Two years later, I had my first hospitalization for Bipolar Disorder.

The law of unintended consequences...

When I was 19 and the doctor discovered my mother had taken DES when she was pregnant with me, he immediately put me on 800mcg of folic acid per day. Decades later, in terrible pain, I found my way to this forum, had 23andme do a genetic test and realized that without B12 that folate was probably causing me heaps of problems.

I'm still trying to figure out what exactly is going to make me run smoothly. Wait, maybe I'm still trying to figure out how to stop doing damage! I'm not sure where I am exactly! (And not for lack of trying, believe me!)

 

[stridor]

@Kathevans

Sometimes our Drs mean well and they come so close to the answer - but close is worse than nothing at all. My Dr put me on SAMe and TMG and it put me in the worst soul-sucking depression of my life....or one of the worst at any rate.

He was so close. It was the methylation system. Everyone (including me) was thrown off by my high B12 tests. It was hard to see that I had a functional B12 deficiency.

I see that you are also TCN2 and have some MTRR++. I do not seem to have an active COMT problem. The one I have is not causing any trouble.