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Active B12 Protocol Basics

skwag

Senior Member
Messages
222
@ahmo

I enjoyed reading your string of posts in this thread. Your evolution of thought concerning dosages was very similar to mine. If I have any symptoms whatsoever, my first thought now is to ramp up the folate, and it seems to work. In times of stress I'll also increase the dosage in anticipation of the need. I don't even wait for the symptoms now.

I caught this disease early so it was probably easier for me than most here. I feel absolutely recovered. although I am battling a bit of numbness in my toes. I've been able to work 10 hour days for the past two months surviving on 9.6 mg folate, 24 mg mb12, 3 mg adb12, and 1mg L-carnitine. This would have been impossible 2 years ago without the supplements.

Anyway, just wanted to second your voice about larger dosages.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
@Martial said:
Yes, totally agree! Sorry if that did not come across in my post. My main point was not to get hung up on "ratios" of B12 : methylfolate, as some of us with OCD tendencies may be wont to do, and focus more on symptoms, because the theory is that as long as you're getting enough B12 to get "started", which is a pretty small amount, methylfolate will work.

Also worth noting is that this 100mcg amount Freddd mentioned does not say anything about how much a person needs to make up for existing deficiencies. That amount initially is possibly (or maybe probably) larger.

Other point being is it's an individual thing so none of us needs to get too hung up on what amounts other people are taking and listen to your bod and let it tell you what to do. If you're really going down a wrong path it will usually let you know, as long as you're listening.


@whodathunkit

Yes, perfect post! Thank you so much for the reminder, nothing is more important then listening to our bodies and everyone is certainly unique in their own ways!
 

knackers323

Senior Member
Messages
1,625
Anyone ever had to abruptly stop taking the methylation supps?

It has just happened to me and I have a terrible headache, what seems like a worsening of depression and a few other things.

I didnt think I was seeing much benifit but I am definitely noticing not taking them.

I wonder if this is a sign it was repairing my nervous system?

Any thoughts @Fredd and others?
 
Messages
20
Location
France
@mgd1972: Freddd says in post #33 of this thread

http://forums.phoenixrising.me/inde...tion-and-mislabeling.22529/page-2#post-429422

that only a small amount of mB12 is needed to "activate" methylfolate. Money quote:

So it seems that once we get our depleted active B12 levels up to more or less normal, we maybe don't need a whole lot unless we want to affect CNS healing. Freddd's theory, anyway.

How much you take (folate or the B12's) probably also depends on what symptoms you have, what start-up symptoms you get that you can tolerate, and what is your ultimate goal of taking these supplements.

For myself, I don't "match" amounts of folate to B12 but try to keep a good supply of both active cobalamins around, as well as a good supply of folate. One thing I'm trying to do is see if large daily doses of mB12 affect my hearing loss in a positive way, otherwise I might not be so hell-bent on taking as much as I do. So far it seems like things might be getting a little louder, but it's probably way too soon to tell.

The other thing I'm doing is trying to see if a lot of folate will positively affect the health of my lady parts. Again, it's pretty soon to tell. But that's what I'm trying to do. Overall I feel much better, so that makes it a little easier to stick with, at least for now.

Thanks for your great post.

I'm glad to hear we don't need to match the amounts of methyl folate and b12, because I will take 30mg methyl folate from now on, and 12mg of sublingual b12 already makes me feel like I'm spending my entire life with pink gunk under my upper lip :)
 
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Messages
30
Hi everyone,

Seems difficult to catch @Freddd, which is understandable, he must be bombarded with questions. So I thought maybe some of the other cunning forum members could comment on my questions. Please note that I've read every FAQ I could find and been browsing through the mazes of threads related to this protocol, trying to work things out myself before bothering others.

I’m not a CFS nor an ME sufferer. But after some years of garden variety (but deep) adrenal fatigue/burnout, I came down with nasty B12 deficiency symptoms that I initially treated with, compared to Freddd’s recommendations, baby doses of B12. I responded to these somewhat, but after a while symptoms got worse again. Then I did some research and found Freddd’s original protocol, which made sense to me. However, it seems hard to find information about how to determine one’s optimal dose of the basic supplements, as well as the ratio between them. I don’t get a lot of ’startup symptoms,” if any, but seem to respond rather well to all three of adB12, mB12, and methylfolate. (Edit: The only ’side effect’ is a marked drowsiness from the mB12, but I'd rather have that than deficiency symptoms.) Should I just keep upping everything as long as I benefit from continuously higher doses? Doing one’s own trials is certainly possible; but since it may take long time to gauge the outcome, and the neurological clock may be ticking, it seems wiser to ask people who have already been down that path and know the terrain.

Here are some of the symptoms I ascribe to my B12 (and possbily folate) deficiency:

More or less constant (responds slightly but not completely to more mB12)
Decreased sensitivity in hands (but far from complete numbness)
Decreased muscular strength
Cognitive: trouble with finding words, creative thinking, relating effortlessly to people, performing non-automatic tasks, executive flexibility
Motor: writing more slowly on keyboard, often writing a random wrong letter when handwriting
Diminished sexual response
Overwhelmed by sensory input (especially noisy and crowded places—also partially related to AF and cortisol status)

Transient, can often be corrected with high enough doses of mB12
anxiety
confusion
sense of impending doom
blurred vision
sense of losing orientation even in familiar surroundings
stiff gait, as if afraid of losing balance (I've never fallen, though)
unusually weak legs
feeling of lower legs verging on falling asleep

Other
Sometimes electric shock sensations in scalp during last hours of sleep—probably because of B12’s half life, I guess: all used up during the night

* * *

Right now I’m taking as much Jarrow 5 g B12 as I need not to feel acutely deficient, typically 4–5 a day, and 1 Source Naturals 10 g dibencozide, plus 2–3 mg methylfolate (Thorne MTHF), plus most of the other basic essentials. I have not been trying LCF, though, as I don’t think I have an overall methylation problem—or do I? Is there a difference between downright B12 deficiency and methylation problems?

I would love to get some feedback on these questions:

1. I’m taking 1 tsp of glutamine a day for other health reasons and often a serving of rice protein, as well as some bone broth now and then. I know Freddd’s standpoint on this and want to do a trial—but for how long must I exclude things to determine whether glutathione precursors are a problem or not? Would rice protein and bone broth pose an issue, or even things like milk thistle?

2. Ratios and dosages! Gee, this is the tough one. How much of mB12, adB12, and methylfolate should I be taking for my specific symptoms? And for how long should I stay on the max dosage? I gather for example that adB12 and mB12 heals different domains. I seem to have no major problems with upping doses abruptly, so basically I feel I could pound in any amount starting today if needed for neurological healing. But should I? Recall that I don’t have the CFS achiness/soreness or things like that, and I am not extremely sensitive to supplements.

3. Is there a point in doing the one time megadoses trials? Who could benefit from these and why?

4. Should I add LCF to enhance healing or is this only indicated in clear cut CFS cases?

Thank you so much in advance to anyone who cares to speak to this! All informed input is most welcome.

Best,
 
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whodathunkit

Senior Member
Messages
1,160
@aaadrien...don't worry, you get used to the gunk. Then suddenly, one day, when you notice you don't have any gunk at that particular time, you miss it. :p
 

knackers323

Senior Member
Messages
1,625
If the body has no gene defects or anything and is able to utilize it properly, is hydroxy a substitute for both methyl and adeno B12? Or does it only get broken down into methyl?
 
Messages
37
@ahmo

I enjoyed reading your string of posts in this thread. Your evolution of thought concerning dosages was very similar to mine. If I have any symptoms whatsoever, my first thought now is to ramp up the folate, and it seems to work. In times of stress I'll also increase the dosage in anticipation of the need. I don't even wait for the symptoms now.

I caught this disease early so it was probably easier for me than most here. I feel absolutely recovered. although I am battling a bit of numbness in my toes. I've been able to work 10 hour days for the past two months surviving on 9.6 mg folate, 24 mg mb12, 3 mg adb12, and 1mg L-carnitine. This would have been impossible 2 years ago without the supplements.

Anyway, just wanted to second your voice about larger dosages.

Hi, skwag.

-I was wondering if the 24mg mb12 you take is a mix of Enzymatic Therapy and Country Life mb12 ,
-If not the case, why not?
-If the E.T turned bad in the near future,could you still remain cured on this country life brand?
-have you ever tried vitamin k2(mk-4 specifically?) .I ask cause without the mk-4 the freddd's protocol doesn't work at all for me,with it things work,even if not as much as I would like.
-Have you noticed an interaction between coffee(cafeine?) and elements of the freddd's protocol?
For me it increases reliably the need for Adb12,and mk-4,and more modestly carnitine and other B's.

thanks for continuing to share your experience:)
 
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skwag

Senior Member
Messages
222
Hi yukito

Yeah, I take both the country life and the enzy. I don't really know what would happen if enzy went bad, but I would think I would be fine with the country life. I'll probably try that experiment when work slows down.

I take 100mcg mk-7 and a spoonful of butter oil, which has a small amount of mk-4, daily. K2 is one of the few things I take that I am 100% confident has a positive effect, namely my teeth feel clean all the time and the sensitivity to cold and heat is much better. I'm not sure if the protocol would stop working without the k2, but I do know that my teeth lose their clean slick feeling when I run out of mk-7.

I drink about a pot of coffee a day. I do feel like the coffee ends up sapping my strength, but it hasn't been bad enough for me to do anything about it. Because I drink it everyday, it's hard to say if it increases the need for anything. I think I'll have to try that experiment too.

I think your questions and your observations are quite interesting. If I come up with better answers I'll post something.

Thanks for the food for thought.
 

musicchick581

Senior Member
Messages
115
This is all very interesting. I'm trying to figure out which version of B12 to take. I was on methylcobalmin liquid drops but couldn't get past 600 mcg. My doctor said I could try hydroxycobalmin if I want. He told me I absolutely have to take NAC. He said methylfolate around 900 mcg and B12 around 600 mcg. is fine. So, Idk. I ordered sulfite test strips. I have quite a few food sensitivities as well as LPR reflux symptoms and indigestion issues. Also, I suspect histamine intolerance. DAO is -/- and the other DAO is +/+. There are more in 23 and me but that's all MTHFRSupport reports on.
 

musicchick581

Senior Member
Messages
115
Can anyone help me with the DAO issue? I've had reflux/LPR since last summer and increased congestion. Could this be a histamine thing? Serum histamine is normal.
 

kyzcreig

Senior Member
Messages
141
Location
Houston
First, thank you for writing and sharing your research Freddd.

Re: Avoiding Glutathione
Glutathione, especially topical glutathione, noticeably helps me (diminishes symptoms, improves sleep, etc.).

My main symptom now is sensitivity to foods and chemicals, I do not have so much fatigue or pain anymore. Admittedly reactions to the former precipitate the latter (that is, fatigue follows chemical sensitivity). Is your B12 protocol something I should look into? Would I need to discontinue glutathione despite its benefits, then?

There are so many disparate causes and comorbid conditions associated with CFS that it's hard to keep them straight. I'm hoping to know whether my condition fits the bill for this theory. I don't want to waste anyone's time.

Perhaps it's worth mentioning I've had some success chelating mercury and then following up with the ONOO protocol of Dr. Pall. Supplementary to that I've read that improving Glutathione recycling can improve gut and chemical symptoms like mine by curing a Leaky Gut that does not improve with an elimination diet or antimicrobials.
http://sanjosefuncmed.com/intestinal-permeability-clinical-unwinding-leaky-gut/
http://sanjosefuncmed.com/autoimmune-disease-u-s-part-6-6-part-series/

To those above discussing DAO deficiency, I've being taking DAO and saw minor improvement but it certainly wasn't a cureall. At least in my case I suspect the problem is much deeper than DAO deficiency, especially since my reactions are not exclusive to histamine foods.
 

Moshi

Senior Member
Messages
194
Location
Sweden
I really need help! *desperate* *scared*

I've been using methylation supps for 7+ months now. I am up to 4,2mg M-Folate, 3mg MCbl, 4mg AdCbl, 1,2 mg LCF.
My B-Complex contain: 25mg B1, 25mg B2, 50mg B3, 25 mg B6, 25mg Biotin (Swanson's Activated B)
I take 500mg TMG, 20mg Zinc, 1,5g Mag, 700mg Potassium Gluconate.
About 1 month ago I decided to take a few additional measures, This may have been a fatal decision.
I started to add glandulars (bovine, adrenal) to try and stimulate my (what felt like dead) adrenals. After about two weeks they began to have some effect, my daily stamina increased. I also increased vit C to about 2-4grams/day.
I then decided to intruduce BH4 (2,5mg) because of my mthfr a1298c ++ status and a persistent low grade chronic depression. I mixed in a small amount (400mg) liposomal Glutathione with the BH4 to try and prevent its oxidation (as per M Pall) shortly after I introduced this I think that I forgot to take my LCF for about a week....and this is when I ran in to major problems, namely leg neuropathy as chronic partial paralysis. From taking brisk power walks just three weeks ago I am today struggling to walk, limping slowly forward....I discontinued the BH4 and Glutathione but I am continuing to deteroriate neurologically....
I am now desperately trying to figure out what has gone wrong! The strange thing is that my fatigue has decreased sonewhat while I'm experiencing the worst neurological symptoms to date...!?
On top of everything I am chelating with DMPS (3+ months after amalgam removal I am doing rounds with 30mg DMPS/6h for 4-day rounds) and I feel like I may have entered the dreaded "dump phase" as the last few rounds have agressively aggravated the old mercury symptoms....
Does anyone here have any idea of where I have gone wrong? Any ideas of what strategy I should apply to try and correct this? Anyone here with similar experiences? I appreciate all input!! Thanks!
 

whodathunkit

Senior Member
Messages
1,160
Moshi, it sounds like you may be doing (or did) too much at one time. Your body simply can't handle it.

If it was me I would stop the glandulars and BH4. Maybe the glutathione, too, although we need it for effective chelation. I just remember reading Freddd said some people can't tolerate oral glutathione or increasing glutathione too much, and you may be one of those. So it's your choice whether or not to stop glutathione. Or perhaps you could stop it for a while then add only it back in (no BH4), to see if it causes you more symptoms.

Anyway, definitely stop the glandulars and BH4.

I would cut the TMG for a while.

If you are taking LCF again I would drop down to 250mg or so and work back up from there. 1200mg is a big dose of that in any case. Why so much?

Try adding more methylfoate and MCbl. Base your increase and the time lapsed between increasing on your previous experience.

Mercury can cause neurological symptoms, so chelation might explain some of what's happening to you.

Set a date to stop chelating (like three days or a week in the future or whatever) if you don't already have one, and when you hit that date take a break from chelation or a while. You can chelate some more later. Multiple rounds of chelation are standard, anyway, since it's so hard on the body.

Drink A LOT of water to help get rid of the mercury you're chelating.

Salt your water, 1/4 or even a half teaspoon per 8oz water. Not highly salty like the ocean, but just the amount that might be in your tears. People with hypoadrenism need a lot of salt.

Extra salt will also help ameliorate or even alleviate symptoms from chelation.

If the salt water tastes really good, that means you really need it. The first time I ever drank cool salted water it tasted like heaven. That was a couple years ago and even though my adrenals are much better and I don't need as much salt, I still drink salted water and eat a lot of it on my food. Sodium is frequently the forgotten mineral. We've been conditioned to believe that salt is dangerous but that's only true for a small subset of people. If you don't have kidney problems you won't have trouble with salt.

After you stop chelating gradually add back in the TMG, gradually increase LCF, and start gently on the adrenal glandulars.

That's what I would try first if I were you. If you don't improve on that you may have to cut some more stuff. But that would be my first line of action.

YMMV.

Hope that was a little helpful. Good luck!
 
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juniemarie

Senior Member
Messages
383
Location
Albuquerque
@whodathunkit Since I have been on this protocol it seems my taste for salt has increased. I am doing 1mg methylfolate, 1mg methylb12, 2mg adB12, 300mg potassium gluconate. Have not added LCF. Doing pretty good but once in a while get a little brain fog but is not lasting very long like it used to.
I usually eat quite a bit of Real Salt on my food every day but just in past week seem to be needing even more.
What would be causing this? Should I be concerned about eating so much salt? thanks
 

whodathunkit

Senior Member
Messages
1,160
@juniemarie: I don't know for sure but will speculate that if you're taking potassium as a prophylactic but don't have or have never had any potassium deficiency symptoms, that could be driving your craving for salt. Potassium and sodium have to keep a relative balance in the body. When one or the other goes out of balance it can cause symptoms and/or cravings.

I believe we really only need extra potassium when we're showing symptoms of deficiency, and I think over time our potassium levels stabilize when our body becomes accustomed to the increased metabolism provoked by increasing methylfolate. I haven't taken any extra potassium at all in over a week, for example, despite still taking juggernaut doses of methylfolate. And before this week I had radically decreased supplemental potassium from what I was taking when I first started all this. I seemed to have reached an equilibirium with methylfolate/methylation and potassium.

Also, increased potassium might make you pee more. If you pee more you're also losing salt.

Either one of those scenarios sound familiar?

I like salt, and everything I've read on it (quite a lot) leads me to believe that unless a person is in kidney failure or has kidney problems, or unless a person is eating a lot of crap food with transfats and refined carbs, salt to whatever your taste is is fine.
 
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juniemarie

Senior Member
Messages
383
Location
Albuquerque
@whodathunkit Hmm it does seem like I may be peeing a bit more. Maybe I should cut back on the potassium. Right now at 600 mg of magnesium and 300 mg of potassium. I have never taken potassium until a couple of weeks ago for the protocol. Been taking magnesium forever. I can't make heads or tails of all the lists of symptoms posted for deficiencies but I just looked it over again and I don't think I have any of the most popular ones so maybe I don't need so much potassium.
The curious thing is even before starting potassium, I had been, not exactly craving salt, just have the urge/ need to eat a lot of salt……so eating and wanting lots of salt before potassium and eating and wanting even more since starting potassium……..it just seems something is not in balance but I really don't know what to make of it.
I also looked at symptoms of too much and I don't have those either