• 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.

My current methylation puzzle

NilaJones

Senior Member
Messages
647
Short version: Should I add a cofactor? Am I in danger of methyl trap?

Relevant data:

When starting methylation, I could not tolerate even 1mcg of B12 from supplements. For the first couple years, I took clam juice, 1/2 teaspoon per day, which is about 1mcg but gentler on my body.

I just recently graduated to 1mcg of B12 from supps. (Hydroxy, Perque brand. I have tried methyl, Sisu brand, in the past and reacted to it the same as Perque.)

I also get 5-10mcg from diet, and 350mcg in my multi (Thorne), but I don't react to those the way I do to clam juice and B12 supps.

The multi has 333mg methylfolate and 333mg calcium folinate. I know this is a lot fro the amount of sublingual B12! But it is what one would get from a normal diet.

I have been a vegetarian/vegan much of my life. I started eating meat again years before I got sick, though.

Before starting B12, I took folapro alone, and it helped a lot. I also took the multi, without folapro. It helped a tiny bit, almost imperceptible. Large amounts of green vegies helped much more than the multi, less than the folapro.

I have not been taking folapro for the last few years, I mention it only for data.

My understanding is that the folate I get from the multi is far too much in relation to the sublingual B12 I am taking BUT that undermethylation symptoms are generally folate deficiency symptoms, not B12 deficiency symptoms. I am confused by this.

This week, I tried stopping the multi (subbing thorne citrimins, pantothenic acid, and riboflavin). Continued the sublingual B12.

After 2 days I got strong symptoms (inflammation, always my key indicator). I took 1/2 dose of multi and symptoms improved. So, the multi has much stronger effect on me with sublingual B12 than it did alone. Presumably this means it's the folate in it that I am feeling, not the B12.

Am thinking today to try folapro instead of multi. Or should I try upping the B12 without folate?

I'm in a lot of pain and have to do some work, so I need to do something that will be effective and not give me insomnia :). On the weekend, I can try less reliable stuff.

I also have sam-e and acetylcholine, but have never tried them. Is it time?

Thank you folks so much for any thoughts!

(@Freddd @ahmo @Star-Anise @Sushi @Critterina )
 
Last edited:

NilaJones

Senior Member
Messages
647
For those who like moar data:

Supplements

4 capsules Thorne III mutivitamin/multimineral
2 grams calcium (deficiency, includes Ca in multi)
1 gram magnesium (deficiency, includes Mg in multi)
18mg iron
4mg copper
6mg zinc (plus some in multi)
1mcg B12
Vit D as needed, not in late summer, 15,000iu in winter + light therapy
0-5 grams vit C as needed (currently none)
Fish oil
4g Lecithin
100mcg vit K
400mg vit E / tocopherols, gamma-heavy blend
Trace mineral drops

I vary the supplements based on symptoms, but this is the current default. Each thing I take makes me feel a little better, and I feel a little (or a lot) worse without it. Different types of muscle cramps/pain are alleviated by different minerals. If I am low in vit C I crave sugars. And so on.

Foods (I have a lot of limitations)

1 cup apple juice (big cup, maybe 10-12oz)

Smoothie:
1 can lowfat coconut milk
75g egg white protein
3 cups fruit (berries, bananas, seasonal)
1/4t salt

2 eggs
1-3oz grated cheese (natural, low histamine)
onion, zucchini, tomatoes

Snacks:
1-2T sunflower butter
1 cup milk sometimes
2-4 cups carrot juice (potassium)
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Ok, my soul sister, :hug:

I know we've spoken of histamine intolerance before, and I have to go back there. From what you write, you have some histamine in your diet, and I'm going to suggest that you get rid of it and see what that does to your inflammation before you tweak your supps. Here are the things that have too much histamine in them for me to be anywhere near healthy:

1. Egg white protein. Sorry, any uncooked egg white is a problem. There are lots of non-soy, non-egg white options (pea, whey)
2. Berries, any kind.
3. Are those 2 eggs cooked? You can keep them if they are. Otherwise ditch the whites.
4. Tomatoes. A quarter of a slice will send me for my albuterol and pseudophedrine. A slice will require prednisone in the 10s of mg, not the 6 mg I take daily for adrenal insufficiency.

I'm not saying they are causing you problems, but do a trial without them and let me know, OK? They would be Inflammation City for me.

Just because we are so similar in other things, I also want to mention that I turned up a gene that make converting beta-carotene into Vitamin A inefficient. That's a lot of beta carotene in that carrot juice. I wouldn't suggest giving it up just yet, it's just a note. Oh, I also turned up a gene that doesn't like tocopherols. I'm supposed to use tocotrienols. Also just to note.

Ok, now to what YOU were interested about :)

Methyltrap: I'm no expert on this one. Methylfolate can be converted back to folinic acid. It gets slowed down by your MTHFR A1298C +/-, but not stopped entirely. I'd be more worried if you were +/+ for it. The other pathway is pretty much blocked by your MTRR if you don't have mB12.

Are you sure you don't have your mg and mcg typo-backward? 1 mcg of B12 - I've never heard of that. I use 1 mg methylfolate and 15 mg (15000 mcg) mB12, just for reference. If you really are at 1 mcg hB12, yes, I would increase it - slowly as you feel comfortable. But the inflammation? I'd put my money on the histamines.
 

Star-Anise

Senior Member
Messages
218
Hi @NilaJones - I concur with lovely @Critterina above.

It looks to me that things are slowly coming along for you, which is awesome.

After 2 days I got strong symptoms (inflammation, always my key indicator). I took 1/2 dose of multi and symptoms improved. So, the multi has much stronger effect on me with sublingual B12 than it did alone. Presumably this means it's the folate in it that I am feeling, not the B12.

Recently I have had made peace with folate in supplements for my body. As I said on other thread I'm doing the nutritional balancing program (best known via Dr. Wilson's work), & at least one of the supplements that I am on has folate in it. I was ++worried about it to begin with, as I was unsure whether my system could handle it due to my MTHFR mutations. But I found that with the RS (resistant starch), my body was able to handle it, & I increased my co-enzyme Q10, which I believe acts as a methyl donor. With these players, I was able to find balance, & my body is really responding quite well. My understanding is that RS increases your ability to methylate folate.

I have often mulled over the B12-folate balance. The advice that I have received often is to get it as close to equal as possible. I know for me that I tend to do better with higher amounts of B12, and have never been able to get my methylfolate doses high enough.

Currently I am on: 750mcg of methyfolate, 1.5 mg of methyl B12, 8.6mg of adenosyl B12.

I found that brandnames were very important for me to get stabilized. I use Solgar methyfolate, Enzymatic Therapy methyl B12, and Anabol Naturals Dibencoplex (adenosyl B12)

Am thinking today to try folapro instead of multi. Or should I try upping the B12 without folate?

I am not an expert on methylation. I only know what I know from my own experience and a few other people that are working on their health around me, and from this site.

What I recall from your history is that when you started to increase your B12 slowly that you noticed positive improvements.

Since you noticed that you felt better with the multivitamin in your regimen, I would keep it there for now at the dose that stabilized your symptoms (I believe you said half the dose).

I would then work on getting your dose of B12 up to a level that is closer to your folate. I would work on slowly converting to the methyl forms of these supplements if possible, but not at the jeopardy of what is currently working for you - if that makes sense. My friend is taking the Thorne multivitamins - just one a day to get a small dose of the folate/B12s, and this really works for her. She then adds more of the supplements individually that she requires instead of taking more of the Thorne multis. I think they recommend like 3-6 of them per day or something like that & she has similar MTHFR snps that you do...but she does well on just one of the Thorne pills per day.

Hope that helps a bit :) S
 

Gondwanaland

Senior Member
Messages
5,095
I'm in a lot of pain and have to do some work, so I need to do something that will be effective and not give me insomnia
What are you calcium and magnesium levels?

Calcium promotes muscle contraction. Magnesium promotes muscle relaxation and better sleep.

That is a lot of calcium and vit D you take. Too Much Vitamin D?
The vit K is the K2 form?

I also noticed that your foods are high salicylates, and for me those had the effect of increasing uric acid and anxiety - lowering magnesium - don't ask me how.

Do you also take a B complex? B vitamins also increase the need for magnesium.

Perhaps if you rearrange the Ca/Mg proportions and add a probiotic (I must stay away from L. acidophilus) will do the trick.

Just my 2¢!

izzy
 

NilaJones

Senior Member
Messages
647
Thank you so much, @Star-Anise, @Critterina, and @Gondwanaland!

It's killing me to type today, so this is brief! But I read all your comments and very grateful :).

Yes, I really mean 1mcg B12, not mg.

All my foods are tested for reaction. No tomatoes for 1 year, then ate a handful and no reaction, etc.

Hugs to all.
 

NilaJones

Senior Member
Messages
647
Hi again :).

Hello soul sistah! to @Critterina! And much gratitude to @Star-Anise and @Gondwanaland!

Answering questions:

Yes, the histamine diet has helped me enormously with inflammation. Tomatoes and eggs just were not the culprits :).

I don't know my current calcium and magnesium levels, but I get symptoms if I take less of either one. I am currently increasing magnesium.

I use a topical salicylate at night, with no problems, so I guess they are ok in foods? Feedback welcome.

I don't take a B complex beyond the Thorne.

Update:

I tried raising my B12 to 2mcg, after being off folate for two days. The B12 made me shaky and with somewhat altered consciousness for 7 hours, then crashed hard for an hour or two, then mellow but ok. Insomnia that night.

It felt like a drug trip, which B12 always does, for me, in doses higher than my daily one.

During that 7 hours, I tried 2 doses of 200mcg folapro, 2 hours apart, and 2 thorne after another 2 hours. None of these increased the jitteriness. The folapro may even have mellowed it a bit.

Have added back in the Thorne. Still pretty bad inflammation from going without it two days. B12 back down to 1mcg.

What I have learned:

Folate does not add to the stimulant effect of B12, for me.

Thorne multi helps a lot with inflammation, but only in conjunction with B12. This might be the folate in it, but I am not sure.

Unlike the stimulant effect, which begins in about an hour, the anti-inflammatory effect takes days or a week to begin.

So, what do y'all think of this? Any ideas where I should go next?

Obviously I need to try subbing folapro for Thorne for a few days, if I want to know the true role of folate for me -- but I have to wait till I am ready for another week of increased pain.

What else could I look into?

Hugs to all :).
 

NilaJones

Senior Member
Messages
647
Hey girl! If you're truly stuck, and everyone on here is stumped, I suggest getting a consultation with a really good methylation doc. Several of them will work via phone or Skype.
I think I might like to do that.

Can you tell me who is considered good? In pm, if that is more appropriate.

Thank you so much :).