• 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 (FM), 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.

Would appreciate help and suggestions on stage I am at with Freddd's protocol

juniemarie

Senior Member
Messages
383
Location
Albuquerque
I'm not sure how to read my reactions and what step to take next, if any. This is what I take now

first thing in the morning on empty stomach
B Complex plus by Pure Encapsulation, it has included in it 400 mcg Metafolin & 400 mcg of methyl B12
couple of hrs later take 1/4 of B12 Infusion and 1/8 of Dibencoplex
thats it other than c,d3,artichoke extract,magnesium citric form, and a baby aspirin
My thinking on not taking the Solgar methylfolate is its included in my B complex and I was worried it may be too much, but really don't know if thats accurate thinking on my part.
As far as my reaction My mornings have been better than they were before starting the protocol. Not so groggy and wake up more alert with less stumbling around before I can get going.
But as it gets towards afternoon I begin to get foggy in the head with a pressure like something is sitting on my forehead pushing down and although not exactly exhausted its more like a fragile feeling as though I am always on the verge of wilting into a heap.
I would love any ideas on how I might read this reaction and whether I should add anything now or wait a while.
I know Fredd has a list of various reactions and what they mean but I don't really relate to any of them plus not sure I completely understand them. thanks
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
@caledonia the B12 Infusion methylb12 is sublingual & the Dibencoplex adb12 is sublingual The B complex is not
So I am taking 350 mcg of methyl b12 + 400 mcg methylb12 in complex, 250 mcg of adb12, and 400 mcg of methylfolate in my b complex
 
Last edited:

whodathunkit

Senior Member
Messages
1,160
@juniemarie: what brand of methylb12 matters. Enzymatic Therapy methylcobalamin lozenges 1000mcg or Country Life methylcobalamin 5000mcg #6304 (look for "Product No. 6304" on bottom of the back label) are the best. Sometimes if you've got a bad brand of methylb12 it's like taking nothing at all. You don't say what you're using but if you're not using one of those you might try doubling the amount you infuse or making another purchase of one of these brands.

Also might suggest trying another 400mcg of methylfolate along with some more methylb12 in the afternoon when you get foggy.

I do better when I split my methylfolate doses throughout the day. Even when I decrease my dose (to a normal person's level of single digit milligrams of it) I will still probably split it to at least twice per day, just because it has a relatively short half-life in the body.

Worth noting is that I used to split my adb12 dose when I was first getting started with this. Splitting the adb12 helped keep me from "running out of gas" later in the day. I would take half the dose first thing after I woke up, and then the other half around 4-5 hours later (or noonish/1pm). I no longer have to do this (I don't really run out of gas any more), but it did help when I was just getting started with this. Adb12 actually gets stored in the mitochondria. But if you're severely depleted of adb12 it may take a little while to build up those reserves again. After you've built up your reserves you may find that your energy stabilizes.

Also, how's your blood sugar? Afternoon brain fog could be indicative of hypoglycemia. Maybe it would help to eat a small snack with some protein and some good carbs. Not like nuts or peanut butter, but actual protein like an ounce or two of chicken, meat, or cheese, etc., and along with a half cup of blueberries or half an apple, something like that. A snack with the protein to carb ratio about 1:3.
 

caledonia

Senior Member
@caledonia the B12 Infusion methylb12 is sublingual & the Dibencoplex adb12 is sublingual The B complex is not
So I am taking 350 mcg of methyl b12 + 400 mcg methylb12 in complex, 250 mcg of adb12, and 400 mcg of methylfolate in my b complex

Since the B12 in the B complex is oral, it only absorbs 1-2%, so basically it's like taking nothing at all. So basically you're taking 350mcg of methylcobalamin, and 250mcg of adenosyl. Which leaves you with a slightly higher amount of methylfolate at 400mcg compared to methylcobalamin. This could put you in somewhat of a methyl trapping situation.

If you're not taking the brands Freddd has scoped out or the brands that work for me (Douglas Labs liquid methylcobalamin, Holistic Health liquid adenosyl), then we can't be sure if your brands are effective, which could mean more methyl trapping.

I second the idea of splitting doses. My B12 is split into four doses (one with each meal and around bedtime). I can actually take more B12 in a day if I do it like this.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
@caledonia @whodathunkit Yes I am taking the brands recommended on Fredds protocol. So basically I can't count the mthylb12 in the multi. I wasn't sure what % I could count. Clearly I need to increase the methyl b12 to slightly to more than the methyfolate. I will increase it and split it up. I wonder if it would be helpful if when I get these symptoms taking niacinamide would help?
 

whodathunkit

Senior Member
Messages
1,160
@junemarie: we're on at the same time, I guess. LOL

I don't recommend taking niacinimide. Your body uses up methylgroups to process niacin and most of its forms into an active substance your body can use. So basically when you take niacin/niacinimide/etc. you're undoing the process you want to get going when you take adb12, mb12, and methylfolate. That's why niacin is used to "quench" overmethylation...a nice big dose can suck up extra methyl groups in a hurry.

But IMO it doesn't sound like you're necessarily overmethylating to the point where you would want to stop it. It sounds like you're having a start-up reaction. Your body's just not used to the increase in methylation yet. You could also be detoxing a little, or you could need some potassium.

I would try adjusting almost everything else before trying niacin. Niacin puts me in methyl trap and shuts everything down for me in short order. Makes me feel horrible. I don't take a B complex because I can't find one that doesn't have any niacin in it. So I take all forms of active B vitamins in separate pills, except for active niacin.

Again, this is not to say we don't need niacin in balance with the other B vitamins. We do. But if we're getting enough in the food we eat, a little extra niacin causes problems for some of us. I am one. You may be, too.

Of course, you could always try a nice honking dose of niacin and see what happens. Sometimes doing stuff like that to yourself is the only way to figure things out. ;) If you feel worse you know it's not your solution. If you feel better, it's at least part of your solution.

I'm just not a big fan of niacin, and after reading some on it I suspect it may possibly be overused for symptom mediation in methylation, when tweaking other supplements in the regimen and giving things a little bit more time might be just as effective.

Before trying niacin I would try splitting doses of everything (but no adb12 after about 1p, it might keep you up at night if you take too late in the day), adding a bit more methylfolate, a bit of mb12 with every dose of methylfolate, and adding some potassium to your regimen (take potassium with food always).

But that's just my opinion so take it for what it's worth.

Also, a question...when you say you feel "fragile" do you mean strung out/wired, or what? Can you clarify that a little?
 
Last edited:

juniemarie

Senior Member
Messages
383
Location
Albuquerque
@whodathunkit Yes I read that about niacin quenching over methylation and frankly I have no idea if thats whats going on I just thought if it was that would help and as far as I know I am fine with niacin. This morning I did increase my methyl b12 to 500 mcg . I will wait on the niacin after I see if the increase is going to help or not because generally speaking the methyl b should be a bit higher than the mfolate. Have not considered potassium as I don't seem to have any of the listed symptoms that would cause me to suspect that.
No not strung out and wired, the opposite more like lethargic and a bit apathetic, which is not really a "normal" mood for me.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
@whodathunkit almost like on the verge of depression but not there yet…..sorta sluggish mentally and physically The reason I see it as a "reaction" to my supplements is its out of the norm for me.
 

whodathunkit

Senior Member
Messages
1,160
@juniemarie: FWIW, niacin seems to be what people turn to when the get too speedy. Methylation frequently wires people out a bit, and causes a lot of anxiety. Niacin can chill that if it becomes unbearable. But that's not what it sounds like is happening to you.

So maybe you could try a little l-carnitine fumarate. And acetyl-l-carnitine. But not together. Separately, on different days. To see which one works better for you (if either). Take in the a.m. on an empty stomach. You may need the extra boost one of these amino acids provides. Most people seem to like one or the other better, rather than using both. Plus they're kind of pricey.

If you order the l-carnitine-fumarate (LCF), get the Doctor's Best brand. Look for "Sigma Tau" on the back label. I can't remember if Sigma Tau is the manufacturing process or the raw manterials manufacturer, but regardless. it's supposed to be the most effective. I also got Doctor's Best acetyl-l-carnitine (ALCAR) when I tried it, too. But ALCAR doesn't work all that well for me. LCF is one of my best buddies now, however.

LCF was one of those supplements that I had to start really slow on. It made me speedy and gave me a little anxiety when I took too much, although it was never unbearable. I just cut back the dosage and it resolved. I only tolerated a half a capsule for several months, until about a month or so ago I could suddenly bump it up to a whole cap and feel good. It can speed you up quite a bit. So if you decide to try it, be aware of that.

Depression and lethargy can also be signs of not enough methylfolate.

Another thing to consider is SAM-e. It's supposed to have a big effect on depression by supplying methyl groups. I've tried it and it seemed to do me some good in the beginning, but it's hard to tell how much because I only seemed to need it for a short time. When your body has the right nutrients to use and methylation processes going, it will produce the SAM-e it needs on its own.

But you might consider supplementing a small dose of SAM-e just to see what happens. Like 200mg or less to start. Typical maximum daily dose of SAM-e is 400mg.

I can tell you that getting your methylation processes functioning so that you feel good and stable can be quite a journey. It's a lot of tweaking this and trying that until you figure out what works for you. You may crash a few times, and you may get sick like with the flu or a really bad cold. You may also find your sleep patterns disturbed until you get better. Ups and downs are pretty normal. You've only just begun. So don't discouraged. Read as many of Freddd's posts as you can. Not only will you pick up valuable information, but they're encouraging. He was very sick and debilitated. But he's much better if not completely recovered now, because he kept researching and teaching himself, and simply refused to give up.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
@whodathunkit Thank you so much for sticking with me as I try to piece this together. I do have the correct Drs Best LCF in case I decide to try it……..you see I have not just begun this journey I have been on it for about 4 yrs.

First on RichVK's Simplified Yasko,(for 3 yrs) then added in LDN, then found out I had Lyme and got distracted with that for a while, then got my 23&ME genetic test, then began treating according to my SNP's ,then life threw me a curve ball and had to stop everything, when recovered from the curve ball, began treating lyme again and got extremely ill from it, then decided I needed to go back and rethink methylation with my snp's in mind because I felt my reaction to the lyme treatment was telling me to get the methylation protocol in place first and then treat lyme, so here I am again !

Last week I decided to try a tiny bit of TMG as it's a pre curser to SAM-e but because of my SNP's was not sure it would work. Actually 2 snp's indicated it would work and 1 snp indicated it may not………so darn confusing those snps The TMG was amazing for a couple of days in the energy department but started feeling depressed in the evening so I stopped.

have stacks of print outs on Fredd's protocol but never seem to be able to find the latest one, I think I have it now.
Took my multi b complex at 6 am (just counting the mfolate in it as part of my daily dosage,not the mb12) first dose of mb12 & adb12 at 9 and at noon took another dose of mb12 and mfolate.

so my total today is adb12 350mcg, methylfolate 600mcg, methylb12 1,000mcg and I think the fog is lifting from my brain Fingers crossed! Will report again in early evening to see if its better than it has been.

So the changes I have made are spacing out my dose and increasing the methylfolate by 200 mcg & the mb12 by 500 mcg
 

whodathunkit

Senior Member
Messages
1,160
Ah, TMG. I really loved it for a couple weeks. It actually helped even me out from the wiriness of LCF. Then I got a little too exuberant with it and it gave me the poopies. o_O Alas, 'twas the betaine.

But after reading your post I may try a smidge again, just to see. I've been kind of feeling like maybe I can feel a bit better than I do, but not sure which way to go. I was considering a small dose of SAM-e again. But a tiny bit of TMG may be a good place to begin experimenting, as well.

Anyway...I'll be interested to see if upping your methylfolate helps you. From my admittedly limited experience it sounds kind of like you're having start-up reactions but can't get farther. If that is the case, methylfolate may help with that.

Also sounds like you've got a lot of work to do with the Lyme and all. Complicates things, for sure. I didn't realize you'd been around for so long...I guess I should have looked at your profile a little closer. It definitely sounds like you've done your homework...but you've got a lot to study. I wish you all the best. Please do update with progress reports. :)
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
@caledonia no head pressure is gone, I have increased my dosages but its really hard to try and fit every thing in between meals and other supplements its kind of a juggling act. I "think" I am doing better on the higher doses but today its hard to tell cause the wind is horrendous and I can't think straight enough to tell how I am feeling
When do you ad the LCF?
 

caledonia

Senior Member
@caledonia no head pressure is gone, I have increased my dosages but its really hard to try and fit every thing in between meals and other supplements its kind of a juggling act. I "think" I am doing better on the higher doses but today its hard to tell cause the wind is horrendous and I can't think straight enough to tell how I am feeling
When do you ad the LCF?

I think you can add LCF any time.
 

acrosstheveil

Senior Member
Messages
373
I'm not sure how to read my reactions and what step to take next, if any. This is what I take now

first thing in the morning on empty stomach
B Complex plus by Pure Encapsulation, it has included in it 400 mcg Metafolin & 400 mcg of methyl B12
couple of hrs later take 1/4 of B12 Infusion and 1/8 of Dibencoplex
thats it other than c,d3,artichoke extract,magnesium citric form, and a baby aspirin
My thinking on not taking the Solgar methylfolate is its included in my B complex and I was worried it may be too much, but really don't know if thats accurate thinking on my part.
As far as my reaction My mornings have been better than they were before starting the protocol. Not so groggy and wake up more alert with less stumbling around before I can get going.
But as it gets towards afternoon I begin to get foggy in the head with a pressure like something is sitting on my forehead pushing down and although not exactly exhausted its more like a fragile feeling as though I am always on the verge of wilting into a heap.
I would love any ideas on how I might read this reaction and whether I should add anything now or wait a while.
I know Fredd has a list of various reactions and what they mean but I don't really relate to any of them plus not sure I completely understand them. thanks


i've been on the methylation protocol for about a year now and i have recently been getting terrible migraines. I think it may be due to a recent toxic mold exposure 3 weeks ago but it still seems to be bothering me. I know I don't have any mold in my room but it has this weird smell.. I think the dead spores or something take a while to go away. it is quite annoying as I seem to get tinnitus and a migraine every time I sniff my couch/pillows or run my air purifier (i guess the spores are in the filter now). my room is very dry so and we have never had a mold problem. I just was in a house with it and I think brought some spores on my clothes.


I have tried upping my methylation and I have a lot more energy and less brainfog but I have this terrible tinnitus. It is very scary. I don't know how this can still be affecting me but it is. I have been taking 6 grams of potassium iodide and 300mg + of lugol's a day and still feeling terrible. I think it may be a methylation cycle block.

I generally feel okay in the mornings but start feeling dead exhausted around 3 pm. By the time I am coming home from work I am practically falling asleep at the wheel!
 

acrosstheveil

Senior Member
Messages
373
i just reread your post and noticed you have lyme too. I know lyme can cause extreme multiple chemical sensitivity so maybe that is what is going on. I just started taking cat's claw again but also at the same time of my toxic mold exposure. not sure what is going on now.
 

whodathunkit

Senior Member
Messages
1,160
@acrosstheveil: mold can definitely cause all those symptoms, including the exhaustion. In fact, mold exposure can cause multiple chemical sensitivities, as well.

Did you wash everything that was in that house in hot water? Can you? Also your pillows and bedclothes? Then leave everything (including the suitcase) out in the sun for a while?
 

acrosstheveil

Senior Member
Messages
373
workin on it. i'm washing more and more stuff every day. I just fumigated my room with 4 ounces of orange oil (contains 90% d-limonene) in hopes it would help. smell is greatly reduced...but still there.
 

whodathunkit

Senior Member
Messages
1,160
@acrosstheveil: I've heard something called "Thieve's Oil" works well to kill mold. Put it in an aromatherapy diffuser or nebulizer or something like that. Point being that it needs to be finely dispersed throughout the room(s). It's been a while since I've read up on it, but if you google thieve's oil a lot of information comes up.

Also supposedly ozone kills mold. I tried ozone generators a couple of times but they made my throat hurt. Some people swear by them, however. If I was having your symptoms and knew I'd been exposed to mold that might now be contaminating my home, I might give them a try. I wish I could tell you more than google that, too, but I can't. It's been a while since I experimented with ozone.

I wish you the best of luck!