What besides methylation could drive a high need for B12?

[Kathevans]

FAD, NAD, SAM and zinc are all in the Methionine cycle on Ben Lynche's chart, by the MTRR and MTR genes, so clearly some form of B2 as was mentioned above, could help. I've been upping my zinc lately and it seems to be having some effect.

There are so many mysteries intertwined in each of us!

 

[garyfritz]

I've experimented with as much as 120mg/day of B2 and didn't notice any changes. I'm currently taking 20mg/day of B2 (R-5-P) in a Douglas Labs B-complex. I'm taking about 40mg/day of zinc. Not quite sure what to do about FAD, NAD, and SAM ...

There are so many mysteries intertwined in each of us!

You got that right !!!

 

[Gondwanaland]

Any insights there?

Could it be related with getting hypoglycemia in the middle of the night? You could measure your glycemia before and after taking MB12 in the middle of the night...

 

[garyfritz]

Hm. If that was it, that would suggest that it's more likely to happen when I had a small dinner or ate early? I'll see if I notice any pattern with that. Thanks @Gondwanaland!

 

[Kathevans]

@garyfritz You seem to have benefitted greatly from the adoB12, as well as the MeB12, so I thought I'd ask if you know of any other threads that deal specifically with it.

I've only taken it a half a dozen times and each time, the reaction was pretty big--initial nervousness, breathlessness and shakiness I can get through, as well as the tiredness now that seems to follow for a while. My two recent attempts:

1. three days in a row at 1/8th tablet in the a.m.; 4mg MeB12 and 800mcg folate p.m. I slept better the first two nights, then was overwrought, sleepless and had to take niacin the third night. Increasing folate deficiency symptoms and higher need for potassium. (Maybe following this pattern I ought to take the adoB12 only every other day or every third day and titrate up from there...)

2. one day before Christmas I took another 1/8 tablet in the a.m. along with 3mg MeB12 and 800mcg folate; in the afternoon I repeated the 3mgMeB12 and 800mcg folate. I had not only anxiety and breathlessness much of the day, but also increasing inflammation, need for folate. I slept only 3-4 hours that night. My need for potassium spiked over that day and the next--from about 1,200/day to 1,500-2,000. (clearly, this was methylation overkill!)

I've kept potassium levels high as I've tried to re-stabilize. Since major inflammation is part of my struggle, I'm sure the adoB12 is good for me and that I sorely need it. I'm thinking on my next attempt, I'll take it alone in the morning, followed by the usual MeB12 and folate doses in the afternoon.

Or possibly just stopping everything and just taking the adoB12 alone to see exactly what its particulate needs are and to bring it up to some sort of sufficiency

This thread has also reminded me that it's possible that I need to treat my MAO++ further--more magnesium (now about 500 mg citrate+malate) and more B2 than I'm getting in my daily (roughly 25mg of r-5-p, I think).

It's also interesting to me that you noticed no difference from the lithium; I've got the TCN++ snp and have tried it only once. It seemed to give me day-long indigestion. I haven't gotten around to trying it again.

I can only put myself through so many experiments before I need a break!

 

[garyfritz]

I feel for you @Kathevans!! Unfortunately I stumbled into my ado/me blend by accident, and I can't offer any intelligent suggestions on what might work for you.

I first started having significant symptoms about 3-4 years ago. Totally by luck I stumbled across B12, and by luck I tried methyl B12, which totally erased my symptoms for 6 months. Then my symptoms got worse and the mB12 I was using (Readisorb 500mcg spray) didn't do the trick any more. I went through a period of experimenting with various sublinguals, injections, etc, but I felt pretty wretched. I tried adding dibencozide (adenosyl) sublinguals but I didn't notice any benefit. I had full-body achiness, trembliness (?is that a word?), fatigue, just feeling fairly awful. It felt a lot like a really wicked-nasty hangover, without the headache or stomach upset. Then we heard about the B12 oils and I started experimenting with that, and they seemed to soothe my symptoms as well as the Readisorb originally did. There was some kind of mix-up with the oils -- long story -- and I thought I was getting good results with pure methyl oil. (Which made sense because the pure methyl Readisorb had worked so well.) But then I got a new order of methyl oil and I started feeling awful again. I noticed the color was different and eventually I ended up trying the ado/me blend, and *THAT* seems to be what works for me. So far. It's been working well for a year now and hopefully (fingers crossed) it will continue to do so.

So that's how I got where I am. I don't think my genetics work like yours, because I never had the nervousness / breathlessness / tiredness that you're suffering after you try adB12. So I don't think my experiences are going to offer you much help.

Potassium -- I haven't had severe hypokalemia issues, but occasionally I have twitchy/crampy muscles in spite of the moderate levels of potassium I'm taking (currently about 200mg/day). I keep some potassium chloride (non-sodium salt substitute) handy for a quick "hit" of potassium if I start cramping. So far I've only needed it at nighttime.

Magnesium -- I think I may need more. I tried many forms of Mg (oral, Mg oil, Mg gel, etc) about 10 yrs ago when I was first trying to control my night-time twitches and agitation -- which eventually blossomed into my B12 symptoms. I got some benefit from Mg then and it might help me now. But Mg is as hard to ingest as B12 is. I've been meaning to try @Sherpa's Epsom salt enemas, but I'm a little leery because the sulfur might cause a problem with my +/+ CBS SNP. But I need to give it a try.

 

[ahmo]

@garyfritz I used Mg citrate in footbaths. I also used homemade mg oil in footbaths, but I needed fat too much of it. I've resumed mg malate tablests, which I continue to use. The mg citrate might have been making my toenails weak and yellowed, but that might have been from something else, or the combination of minerals. I never found out, and my nails are fine now. Just giving you a heads-up.

 

[Kathevans]

Thanks, Gary. I've read some of your story before, so some of this is familiar. I have been contemplating the oils or some other transdermal approach--because of the avoiding the teeth/gums stuff, as well as what seems to be a smoother, longer diffusion or absorption which people talk about.

As to the adoB12, I guess I'm just going to have to go with the usual, slow titration. It's just such a challenge when you're trying to figure out an approach that juggles the B12s, folate, potassium, magnesium, and B2...even if most cofactors seem relatively stable.

I've long had good luck with almost nightly Epsom salts baths...two cups or so in my bath water. It's very calming for me...as long as I don't make it too hot and drive up my need for the potassium I've sweated out! You're lucky not to need high levels of potassium. In my family low K seems to be a general issue. Even a sister and brother who don't follow a methylation protocol have issues with muscle spasms, Charlie horses and heart palpitations.

I've read about Sherpa's mag enemas and mulled it over, but I don't have the inclination for the time being. Interestingly, the baths and sulphur in general doesn't seem to bother me at all, despite my CBS status, which admittedly is only heterozygous. I also eat a lot of sulphur foods and don't have a problem.

As to footpaths, @ahmo, I got on tonight specifically with the thought of checking out your footbath blog. All the potassium I've been taking is beginning to make my stomach feel yucky. I just popped a DGL. If I can absorb at least some of it in footpaths, I'd be very happy.

Also, I was thinking of the do-it-yourself transdermal cream you make from the MeB12, calling my local Compounding Pharmacy and seeing if I can buy some of that base cream they use for magnesium, etc. I recall you put the tablet in a bottle cap with some lotion, cover it over and then it's ready in the a.m. Is that a Country Life 5,000 mcg tab? Have you tried it with the Bluebonnet drops? And if it's the pink tabs, does it stain clothes? And is it tummy or legs or arms? Should I have some proprietary underwear?!

 

[garyfritz]

You have an even longer litany of SNPs than I do, including several CBS. If you don't have trouble with epsom salts, it's definitely worth me giving it a try. Thanks!

@ahmo is the DIY B12-cream expert. She's used CL and Bluebonnet and had good results with both.

 

[ahmo]

@Kathevans I had terrific results w/ K+ in footbaths. For a long time I took high doses, was very glad to not have to swallow it all.

I'm using my body cream for transdermal applications. Initially, it was grease only, a body butter. Lately I'm using a lotion, so there's a combo of H20 and grease. I started w/ Bluebonnet drops, as that's what I had. I rubbed the very sloppy mixture into my arms, legs, belly. Switching to CL tablets makes it much tidier. I haven't had problems w/ staining.

Now I combine it w/ FMN. When I tried rubbing the FMN into my skin, it was very messy, I found lot's of it on clothes and bedding. So I now crush the 1/2 FMN + 1/2 CL B12 onto a piece of cloth, cover w/ a blob of lotion, and strap onto my arm. I tend to leave it on for an hour or 2, though I doubt it needs to stay that long. I've found that I need 1/2 the dose of each of these since switching to transdermal.

 

[Kathevans]

@garyfritz Yes, try the epsom salts--it's been a real boon for me. Good luck with your experimentation; it looks as if I'm going to be doing the same with the adoB12. My problem is patience. And that feeling of success when you do manage to tolerate something. I hate to go backwards with one thing in order to start another, but I will be doing that to some extent anyway in order to see what's what.

@ahmo Thanks for the positive comments on the K+ and the transdermals--I'm going to begin a transition this week. All very helpful...as is your blog.

 

[Christopher]

@garyfritz Yes, try the epsom salts--it's been a real boon for me. Good luck with your experimentation; it looks as if I'm going to be doing the same with the adoB12. My problem is patience. And that feeling of success when you do manage to tolerate something. I hate to go backwards with one thing in order to start another, but I will be doing that to some extent anyway in order to see what's what.

@ahmo Thanks for the positive comments on the K+ and the transdermals--I'm going to begin a transition this week. All very helpful...as is your blog.

when i have methyl supplements on board the sulfate from the salts seems to work better

 

[mgk]

I recently stumbled on a post by Rich which reminded me of this thread:

Why is the dosage of vitamin B12 so high for ME/CFS treatment?

Basically his idea is that low glutathione would significantly reduce the ability of cells to bind B12.

Have you ever looked into other possible causes of glutathione deficiency? You may be deficient in glycine or cysteine for example.