On Freddd's protocol, what am I missing (if anything)?

[Soporificat]

Hi All,

I'm a long term (18 year) ME/CFS patient, but was just diagnosed a couple of years ago.

I tested positive (hetero) for both MTHFR 677 and 1298, so thought methylation would be very worthwhile to try. I don't know what other SNPs I might have (I've bought the 23 and me kit, but won't get results for awhile).

This is the list of supplements I'm taking, with brand names:

Direct supplements to support methylation:
"B-Right" multi-b complex -- 2 pills a day
Solgar Folate as Metafolin -- 6 x 800 mcg = 4.8 mg
B12 Infusion by Enzymatic Therapy (methylcobalamin) -- 2 x 1 mg = 2 mg (sublingual)
Anabol Naturals Dibencoplex (cobamamide dibencozide) = 2 mg (sublingual)
Doctor's Best L-Carnitine Fumarate = 855 mg
Potassium chloride -- 4 x 99 mg = 400 mg
Lecithin (Whole Foods) = 2400 mg

One note: I take so much Metafolin because if I take less than that to my current amount of b12s, then I get continuous migraines and worsening of the normal level of my other CFS symptoms

Other supportive supplements:
Selenium (Whole Foods) = 100mcg
Vitamin D3 (Whole Foods) = 5000 iu
Vitamin K (Carlson) = 5 mg
Vitamin C (Solaray) = 2000 mg
Magnesium malate (Source Naturals) = 300 mg
Zinc picolinate (Bluebonnet) = 50 mg

I also take Amour Thyroid (1.5 grains)

I've been on the protocol for over a month, and while there were about 6 days where I started to think, wow, this is really going somewhere, most of the time I feel just as bad as usual.

Am I missing something crucial? How long should it take for me to start feeling better, if the methylation is something that will help me at all? I mean, how long a try should I give it until it's clear that it isn't the answer for me?

Should I just try raising the folate and B-12s? I titrated up to the amounts shown above, but have been staying at these levels for the past 3 weeks or so. Actually, I'm not sure why I stopped titrating up. I guess it's because the methylfolate is already high.

EDITED TO ADD:
I remember why I stopped titrating up. I was getting intense and unrelenting anxiety and inflammation in my joints. 5 days ago I started taking Progest-E (a progesterone suspended in E oil) and that has calmed down the anxiety, but I still have some inflammation happening. I figured that the anxiety was due to excitotoxicity from driving the methylation cycle. Not really sure though. Also, I don't know why I'm getting so much inflammation.

One weird thing is that my core body temperature went up significantly on those few good days. Normally, I run a degree (fahrenheit) too cool (on average), and on the days I was feeling good my temp was probably even a little too hot (it got over 99.0 fahrenheit several times--it actually felt great, because I'm used to being too cold, which is really unpleasant).

Thank you for your help or advice!

 

[Critterina]

Soporificat,

I also run about 0.8 degree below normal now that I'm on T4 thyroid, (averaged 96.4 without), occasionally have good/warm days, and hormones increase my temp half a degree (but I was taken off them because I wasn't breaking them down. whatever.) I'm not sure that's associated with methylation. Are you?

My first thought is that you're not on a whole lot of MTHF taking 4.8 mg. Some prescriptions formulas are about three times that. Being double hetero, I wouldn't worry if you do better with more.

My second thought is that your anxiety (and maybe inflammation?) could be due to not tolerating the methylB12. You don't have your 23andme results, but because you say this, I'm guessing that you may have some of the polymorphisms in COMT, MAO A, VDR, and I think there is another one that are associated with that. Hydroxycobalamin might work better. And I might try increasing the MTHF without increasing the B12s (methyl or hydroxy).

My third thought was "Where did you find Anabol Naturals Dibencoplex in something other than 10 mg capsules?" I could only find 10 mg. I actually don't like them because there is so much filler left over in my mouth. I use a sublingual tablet now...forget which brand, maybe Source Naturals.

When you get the inflammation/anxiety, have you tried either GABA or NADH? Either would be sublingual.

Are you taking the MTHF on an empty stomach and away from the Vitamin C?

I can't pinpoint anything you're doing that would cause the inflammation, itself, but that may just be my lack of understanding. Stay in touch and let us know how you do and what you find out when you get your results.

Best wishes to you!

 

[Soporificat]

Hi Critterina!

Thank you for answering my post. I appreciate the help in sorting through this complex stuff. I'm going to respond to your comments in list form (it's easier for my brain that way).

1) Yes, I'm sure that the sudden increase on core body temp was related to the methylation. Here's why: I've been on a stable dosage of thyroid (combo of T3+T4) for three years now, and I've never experienced anything like this. It almost felt like a fever, but it was very pleasant and energizing. My theory is that the methylation protocol increased my thyroid function (temporarily, anyway) on those days. I would love to regain it!

2) Thank you for the encouragement to take significantly more methylfolate. I'm definitely going to try this (actually, I've already started!).

3) I think I will slightly drop the MB12 to 1.5 mg, while greatly increasing the folate. If that doesn't work, then I'm going to drop the MB12 and see what happens.

4)I bought the 10 mg Anabols, and just roughly share it out into fifths. Yeah, it's not a great texture!

5) I haven't tried GABA or NADH. There was some reason why I decided that GABA would be negative for me to take, but I cant remember what it was, lol! Stupid CFS brain! I will look into the NADH. I'm guessing that NADH is useful in cases where you are an "over methylator" since Niacin "eats up" methyl groups? I can't say I really understand this. If my methylation cycle was really moving along because of lack of folate, then aren't I by definition an "under methylator"? Or, is it possible to be under-methylating parts of the cycle and over-methylating other parts?

6) Just how isolated does methyl folate have to be from other foods/supplements. Right now I've been very careful to keep it away from vitamin C and potassium, but that's it. Also, not really sure how long a gap to put between taking the vitamin C and the folate. Do you have any guidelines about this?

Thank you!
Soporificat

 

[Critterina]

Soporificat,
I'm going to answer you line by line, too!

1) Yes, I'm sure that the sudden increase on core body temp was related to the methylation. Here's why: I've been on a stable dosage of thyroid (combo of T3+T4) for three years now, and I've never experienced anything like this. It almost felt like a fever, but it was very pleasant and energizing. My theory is that the methylation protocol increased my thyroid function (temporarily, anyway) on those days. I would love to regain it!

Makes total sense to me. Well, we'll see how you do as you tweak your methylfolate and methylcobalamin. My warm days are anything over 98.0, so I'm a bit jealous, in a friendly way!

2) Thank you for the encouragement to take significantly more methylfolate. I'm definitely going to try this (actually, I've already started!).

I really just didn't want you to worry about how much you were taking. But I don't think you should be uncomfortable taking more, if it helps you. I actually did a couple of days of 30+ mg of methylfolate when I realized that what I thought was acne was what Freddd calls paradoxical folate deficiency.

3) I think I will slightly drop the MB12 to 1.5 mg, while greatly increasing the folate. If that doesn't work, then I'm going to drop the MB12 and see what happens.

This is a do-as-I-say-and-not-as-I-do comment: If you change one thing at a time, it's easier to figure out cause and effect.

4)I bought the 10 mg Anabols, and just roughly share it out into fifths. Yeah, it's not a great texture!

Oh, I see.

5) I haven't tried GABA or NADH. There was some reason why I decided that GABA would be negative for me to take, but I cant remember what it was, lol! Stupid CFS brain! I will look into the NADH. I'm guessing that NADH is useful in cases where you are an "over methylator" since Niacin "eats up" methyl groups? I can't say I really understand this. If my methylation cycle was really moving along because of lack of folate, then aren't I by definition an "under methylator"? Or, is it possible to be under-methylating parts of the cycle and over-methylating other parts?

I know there are people on this site who say not to take NADH with methylfolate because it does use up some of the methylgroups. But NADH also does important things (not that I could think of them now!) So I'm not recommending that you take it, just wondering if you did. For me, I think it helps with energy. Heartfixer recommended it with L-carnitine fumarate, D-ribose, and Co-Q10. I think that because we are taking the same carnitine, it made me wonder.

6) Just how isolated does methyl folate have to be from other foods/supplements. Right now I've been very careful to keep it away from vitamin C and potassium, but that's it. Also, not really sure how long a gap to put between taking the vitamin C and the folate. Do you have any guidelines about this?

My NP just told me to take it 20 or 30 minutes before a meal. She was also interested that I take my thyroid away from minerals. I just have my practitioner's recommendation. She said thyroid, then wait half an hour, then active B vitamins, then wait half an hour, then breakfast without minerals or C. I have minerals at lunch and dinner and C with dinner, but I think C would be fine with lunch too. Of course, sublingual things don't go through the digestive tract, so I take them whenever. But this just what I do because my NP said so. I don't really know the theory behind it.

Stay in touch, OK? Hope you have wonderful success with your experiments!