What Works for Me. So Far. Right Now.

It's … Complicated

So, here’s the short version of what seems to be CURRENTLY working for me with the vitamin supplementation. (Additional details are in the “It’s Complicated” post.)

1. Diet, Part 1: Celiac

Gluten free is absolutely NOT optional for me.

2. Diet, Part 2: MTHFR

I eat a lot of high folate foods. Quinoa seems to especially make a difference, and I’ve learned that I should not go more than a day without quinoa. Red quinoa works better for me than white quinoa, but they are close. I thought black quinoa would be even better than red, but instead it’s the reverse. My body tells me that black is not as useful as white. Even with supplementing for folate, I find I still need a dose of quinoa at the least every 2 days. I have no clue what is in it that makes me feel better, but it’s health food, so I’m not going to quibble over it.

3. Vitamins, MTHFR

* 1 – 400 or 500 mcg tab of Methylfolate (a.k.a. 5-MTHF, L-5-MTHF, L-methylfolate, bioactive folic acid, Levomefolic acid, metafolin, metafolate, methylfolin, optimized folate)
Taken by mouth in the morning, swallowed, and again at lunch time.
DOSING: Standard recommendation is 1 mg, which is the same as 1,000 mcg. I am taking half that. Why? Because with all the folate in my diet, I thought I should start small.

* 1 – 500mcg OR half of one-1mg tab methylcobalamin (a.k.a. active cobalamin, mecobalamin, MeCbl, MeB12, Mevocon, meticobalamin, metacobalamin)
Taken by mouth in the morning, dissolved on tongue, and again at lunch time.


WHY

I am going to drastically oversimplify this. Briefly.

I’ve been having problems for many years now with cognitive functioning, severe enough that I talked with my doc about it, multiple times. Unfortunately, the problems are erratic, and when my brain works, it works pretty darn well. Not as well as it used to, not as well as I’m accustomed to, but well enough that the docs aren’t worried. Here’s what’s been worrying me.

– Deep fatigue
– Memory loss
– Short term memory impairment
– Confusion
– Disorganization

Basically, it is a lack of energy and sparkle, combined with feeling lost and uncertain. I used to be so productive, and loved keeping active. The last few years it’s been more of a case of struggling to make it through most days, trying to find times for extra rests and naps, planning my days to avoid pushing myself past my abilities.

What the folate with cobalamin is doing for me is this. I stay awake through the entire day, even if I’m glutened. Even if I’m tired, I’m more alert and clear-headed. I make better decisions. I have better follow-through on things I promise to do. I’m more coherent. I communicate more clearly. I remember things better. I’m more cheerful, and less snappish.

I’m not going to say the folate with cobalamin is a miracle answer. I’m still working out the right dosage for me, and the right timing of those doses. I still get tired. I especially get tired if I forget a dose, or take a dose late. I seem to bounce back about an hour after remembering to take the dose.

There are good days and bad days. The deal is that even the bad days are better. Heck, my bad days now would have been one of my good days a year ago. My good days now remind me of when I was twenty years younger. It’s not perfect, but it’s better. I’m hoping that as I figure out the right dosage and timing, I may yet find a sweet spot where I actually feel good consistently, and function well consistently, where I can makes plans with some assurance of what I’ll be able to do.

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5 thoughts on “What Works for Me. So Far. Right Now.

  1. Pingback: Folic Acid, More Complicated Than You Might Think | Emerging Technologies Librarian

  2. Hi, my name is Martine…
    Wow, I can soooo relate to this post…especially the part about: (sorry for the copy paste)
    I’m particularly fuzzy-foggy right now…I’m on the same as you and much more…but still have completely OFF days. I just had my period, so I’m thinking that’s not helping. My sleep has been crap lately (even with all the stuff I do and take)…

    I’ve been declining over the years, as you said and are worried about. Other people don’t notice, but I do, and it scares me terribly. I’m 50 now. I think back to 2-3-5 years ago and recognize the shift/trend clearly. Socially, professionally, energy-wise, and willingness to push it.

    “I’ve been having problems for many years now with cognitive functioning, severe enough that I talked with my doc about it, multiple times. Unfortunately, the problems are erratic, and when my brain works, it works pretty darn well. Not as well as it used to, not as well as I’m accustomed to, but well enough that the docs aren’t worried. Here’s what’s been worrying me.

    – Deep fatigue
    – Memory loss
    – Short term memory impairment
    – Confusion
    – Disorganization

    • Oh, Martine, this sounds so familiar. The doctors told me that because my brain works SO well when it works, that it could not be neurological, but probably just meant I needed more sleep. LOL!

      There are a couple of other things you might want to look up. One is MCI “Mild Cognitive Impairment.” Another is food allergies. For me, it is gluten, but I know of other people with the same symptoms for whom the trigger was dairy. Try keeping a food / symptom diary. Note that if it is a food trigger, it could be anything you ate in the previous three days. That’s why the diary is so important. The diary makes it easier to talk with your doctor about the symptoms and possible triggers.

      Also, docs are starting to take this more serious now that research has come out showing that people who develop Alzheimers complain of these symptoms five or ten years before they become diagnosable. With early diagnosis there are ways to arrest symptoms. For myself, I’m playing intelligence challenging games to try to preserve cognitive functioning. You know, Scrabble instead of Solitaire, that sort of thing.

      Good luck, and I hope you find what is causing your symptoms!

  3. I think it should be easier to answer the question of how much folate to take now that there is a good test for it. The usual standard folate test actually measured all forms of folate, including folic acid, so if someone wasn’t metabolizing folic acid, it would pool in the blood and give a misleadingly high result, even though the tissues might be starved for active folate.

    Genova Diagnostics now has a test called unmetabolized folic acid, which measures Pteroylmonoglutamic acid (UMFS) as well as the 5-MTHF form. http://www.gdx.net/product/10180

  4. Pingback: Fiddle, Fiddle, & More Fiddling (a.k.a. “What is a maintenance dose?”) | PGen Participant

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