• 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.

Active B12 Protocol Basics

caledonia

Senior Member
@Nikki7 , we found adenosylB12 was off the menu for quite a while - even a small amount induced nausea. We also had to go very slowly with carnitine because it induced (more) fatigue. We still can't really manage carnitine l-fumarate.

Some of the others here had to take things very slowly - @Sushi @caledonia @ahmo ? Maybe they have some ideas about how you might take things a bit more slowly.

You're not taking high-dose B1 or B2 are you? Too much B1 seems to cause a bit of potassium thirst for us, and others have reported the same thing for B2.

@Nikki7 I have a document called Start Low and Go Slow in my signature link with tips for starting small and working up if tolerated. My suggestion would be to stop and let everything clear out, then restart at a much lower dose so you can handle the potassium requirements.

I'm only doing 20mcg of methylcobalamin, 4 mcg adenosyl and 1mcg folate and even that tiny of an amount required 3000mg of potassium per day. I've been able to reduce to 50mg of potassium after 3-4 years. I haven't been able to increase B12 or folate so far.

I use Now brand potassium gluconate dissolved in water and drunk four times a day. Splitting up the doses allows you to absorb more.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Nikki7 I was up to 30mg B12 and folate when I discovered that eating green veg was pushing my need for folate. For some of us, the veg form, folinic, interferes w/ folate absorption. I halved my folate dose after stopping green veg, and later halved it again by switching from swallowing to taking it sublingual.

My low folate very quickly becomes evident by hair loss. I'd been at 5mg for a long while, but still having episodic slight hair loss. Now I've settled at 6mg and no problems at all. Even my hairdresser commented on how thick my hair has gotten.

I needed a lot of K+ for a long time. Because the doses were high, I switched to using it in footbaths, along w/ aminos and other minerals. This worked great, using K+ gluconate, NOW brand. I thought I'd be taking it forever. But I no longer take any. Sometime after a couple years correcting methylation + detox I stopped needing it. Good luck.
 
Messages
87
@Nikki7 I have a document called Start Low and Go Slow in my signature link with tips for starting small and working up if tolerated. My suggestion would be to stop and let everything clear out, then restart at a much lower dose so you can handle the potassium requirements.

I'm only doing 20mcg of methylcobalamin, 4 mcg adenosyl and 1mcg folate and even that tiny of an amount required 3000mg of potassium per day. I've been able to reduce to 50mg of potassium after 3-4 years. I haven't been able to increase B12 or folate so far.

I use Now brand potassium gluconate dissolved in water and drunk four times a day. Splitting up the doses allows you to absorb more.

Thank you for sharing this @caledonia
It's helpful for sure. I know we are all so different and have different needs. I'm so sick and want to be well again. I'll keep trying to figure it out.
 
Messages
87
@Nikki7 I was up to 30mg B12 and folate when I discovered that eating green veg was pushing my need for folate. For some of us, the veg form, folinic, interferes w/ folate absorption. I halved my folate dose after stopping green veg, and later halved it again by switching from swallowing to taking it sublingual.

My low folate very quickly becomes evident by hair loss. I'd been at 5mg for a long while, but still having episodic slight hair loss. Now I've settled at 6mg and no problems at all. Even my hairdresser commented on how thick my hair has gotten.

I needed a lot of K+ for a long time. Because the doses were high, I switched to using it in footbaths, along w/ aminos and other minerals. This worked great, using K+ gluconate, NOW brand. I thought I'd be taking it forever. But I no longer take any. Sometime after a couple years correcting methylation + detox I stopped needing it. Good luck.


Thank you @ahmo ...you're encouraging! Can you tell me on footbath...do you put same dose as by mouth? What Aminos (brand) and minerals do you use? I've never done foot baths, but I'd love to give my gut a break. Thx so much!
 
Messages
22
ALA chelates mercury. It's used to draw mercury out of the body. Brain too, since it can cross the BBB. But in order to do so with minimal damage and discomfort, you are (according to the Cutler protocol) supposed to take it frequently, so you keep an active level in your body throughout the process. The half-life is about 3-4 hours, so you're supposed to take ALA every 3 hours or so 24 hrs a day for at least 72 hours.

If you take it once or twice a day, it draws some mercury out, then 3 or so hours later it drops it. All over the place. And that can cause all kinds of problems. It's MUCH worse if you still have mercury amalgams in place.

Insomnia and nighttime agitation at 3-4am (which B12 didn't help) was one of the symptoms that flared when I accidentally took ALA. I suggest, **especially** if you have mercury amalgams in your mouth, that you stop the ALA immediately. See if your insomnia clears up. If you DON'T have ANY amalgams, then you might want to consider going on a proper ALA chelation protocol. The people on the Cutler Facebook group see some pretty dramatic improvements.

Hi,

I'm still taking ALA daily. but I only take 50mg of the R-ALA form in the morning. I did try stopping ALA for a day or two but didn't change my insomnia issues. I might try taking some three times per day and see how it goes.

I do not have any amalgams. I had two pin dot sized ones at one time but they've been removed. I did play with mercury in my hand as a kid one time before I knew it was a BAD idea. Dooh! The one heavy metal test I did didn't show I had high mercury levels, so it appeared.

I mentioned elsewhere that I have taken N-A-C regularly and felt ill after a couple of weeks. Stopped NAC and felt better. Someone mentioned that NAC can start to detox mercury. Hmmm. Maybe I still have some mercury floating around. I did start taking chorella and cilantro, etc...again regularly (fairly) which is supposed to help bind and remove the heavy metals. So, maybe that was the missing link, I was taking ALA, NAC, etc...so I was displacing mercury but not taking much of anything that binds and removes it?

How much B12 do you take out of curiosity? I have MTRR++ and possibly MTR and feel good taking Methyl-B12. I recently added more Adeno-B12 and felt a little better. I take about 4000mcg of Methyl with 1000mcg Adeno -B12, other times a little Methyl and 2000mcg Adeno B12. Just trying to see what works best.

Thank you for your response!

Cheers,
 

garyfritz

Senior Member
Messages
599
@soccer_dude, I've been taking about the same amount of B12 as you -- but probably I'm absorbing a lot more of it. If you've been taking pills you absorb very little; if you're using sublinguals then it's much better but still much less than transdermal. Before I found the oils I was taking 35-40mg/day of methyl sublinguals and still suffering symptoms. 3-5mg/day with the oil product works much better. Rough rule of thumb is that you absorb maybe 3-5% with sublinguals, and they've done animal testing that indicates 80% absorption for the transdermal oil. I know it works a lot better for me.

If you think you have any mercury in your system -- and many / most people do -- then I would NOT take the twice-daily ALA *or* the chorella, cilantro, etc. Those substances chelate but they do so unpredictably. On the Cutler FB group there are several people who say cilantro &etc messed them up pretty badly.

Metals tests (hair, urine, blood, etc) aren't very good at detecting mercury. Your body clears it out of the blood &etc fairly quickly. The problematic stuff is what's locked up deep in your brain and other tissues, which doesn't show on those tests.
 

Sidney

Senior Member
Messages
146
Location
East Sussex, U.K.
@soccer_dude, I've been taking about the same amount of B12 as you -- but probably I'm absorbing a lot more of it. If you've been taking pills you absorb very little; if you're using sublinguals then it's much better but still much less than transdermal. Before I found the oils I was taking 35-40mg/day of methyl sublinguals and still suffering symptoms. 3-5mg/day with the oil product works much better. Rough rule of thumb is that you absorb maybe 3-5% with sublinguals, and they've done animal testing that indicates 80% absorption for the transdermal oil. I know it works a lot better for me.

If you think you have any mercury in your system -- and many / most people do -- then I would NOT take the twice-daily ALA *or* the chorella, cilantro, etc. Those substances chelate but they do so unpredictably. On the Cutler FB group there are several people who say cilantro &etc messed them up pretty badly.

Metals tests (hair, urine, blood, etc) aren't very good at detecting mercury. Your body clears it out of the blood &etc fairly quickly. The problematic stuff is what's locked up deep in your brain and other tissues, which doesn't show on those tests.

Very interesting. So is it a good idea to get rid of fillings, even if Mercury hasn't shown on blood tests?

I've given up on the B12 and folate, my excuse that tests showed I wasn't low in either. The sublinguals made me feel sick, and I am sick of taking things. I was told B12 up to 5k and folate 2k-3k mcg per day for MTHFR.
 

garyfritz

Senior Member
Messages
599
I think you have to listen to your body. If B12 made you feel sick, it's probably not right for you. I felt gawd-awful until I started taking B12, and it was a miracle cure for me.

I haven't gotten the dental work yet so I can't prove my "B12 hunger" is caused by mercury, but there are a lot of things that indicate it is. Yes, blood tests are not a good test for deep long-term mercury toxicity.

Most dentists and doctors will tell you mercury amalgams are perfectly safe, that the mercury is locked up in the amalgam. But fillings "corrode" and pit over time, losing mass and becoming smaller until they fall out. Amalgams are made with mercury, silver, and a few other metals. All those other metals are solid. Mercury is liquid and evaporates easily at body temperature. Guess what is coming out when those fillings "corrode." Go look at this video and you can SEE the mercury offgassing. In your mouth, 24x7. And mercury is one of the most toxic substances on the planet. So yeah, I think it's a good idea to get them out. I'm planning to do that this winter.
 

SuzieSam

Senior Member
Messages
201
Location
Israel
I'm severely brain fogged, and I can't get my head around all this complicated info. I don't know how you do it! My brain hurts.

Do you guys follow this protocol because you've had the genetic testing which shows you have problems with methylation?

My B12 is very low normal despite taking sublingual methyl cobalamin 500 most days. I have consistently low B12 despite a diet rich in B12 containing foods. I'm too tired to push my GP to test me for pernicious anemia. Do you all check for that too? Should I? Does it matter at all?

My folic acid level is normal now I'm taking a complete B vitamin pill everyday in addition to the methycobalin. Was low before.

My vitamin D is finally low normal because I take drops every day, after years of being very low.

I'll start taking 1000 a day now my recent blood test showed I need more B12. I just don't know if I should do the rest of this process I don't understand.

I'm so brain fogged - I feel I've dropped 50 IQ points. Thanks for any light you can shine. :star:
 

SuzieSam

Senior Member
Messages
201
Location
Israel
I tried to time it just now - I got to 26 minutes, then got distracted and forgot to notice when it disappeared completely. My brain has got totally scrambled. Source Naturals brand.

But going by that thread it's a good dissolve rate.
 
Last edited:
Messages
87
Having a major potassium deficiency. To be fair I've been super sick for about a year and am becoming more injured by the day. Spine and brain are affected, and walking is becoming harder. After a round of antibiotics my body has gone into a level of potassium deficiency on its own. Adding my mb12 and methylfolate of course increase the potassium deficiency. I am having to ingest potassium foods and take supps constantly. I've taken prob 100 meq today. The supplements help me feel healing but I am struggling with this potassium issue greatly. I hope it's not too late for me to survive. I am at 2000-2500 Mcg folate and know I need more. 3-4000 Mcg mb12 and other basics. Anyone ever had this occur? I am very scared.
Thanks,
Nikki
@Fredd ?
 

Eastman

Senior Member
Messages
526
Having a major potassium deficiency. To be fair I've been super sick for about a year and am becoming more injured by the day. Spine and brain are affected, and walking is becoming harder. After a round of antibiotics my body has gone into a level of potassium deficiency on its own. Adding my mb12 and methylfolate of course increase the potassium deficiency. I am having to ingest potassium foods and take supps constantly. I've taken prob 100 meq today. The supplements help me feel healing but I am struggling with this potassium issue greatly. I hope it's not too late for me to survive. I am at 2000-2500 Mcg folate and know I need more. 3-4000 Mcg mb12 and other basics. Anyone ever had this occur? I am very scared.
Thanks,
Nikki
@Fredd ?

Exactly what symptoms do you have? You previously mentioned diarrhea, which Freddd thinks is caused by folate deficiency rather than potassium.

If you really can't keep up with potassium needs, you may have no choice but to cut back on the methylation. Potassium deficiency, if present and severe, can be life-threatening.
 
Messages
87
Exactly what symptoms do you have? You previously mentioned diarrhea, which Freddd thinks is caused by folate deficiency rather than potassium.

If you really can't keep up with potassium needs, you may have no choice but to cut back on the methylation. Potassium deficiency, if present and severe, can be life-threatening.
Thank you. I have spine and brain pain and nausea daily. I don't think I metabolize thins right. My illness has progressed and is very severe.
Exactly what symptoms do you have? You previously mentioned diarrhea, which Freddd thinks is caused by folate deficiency rather than potassium.

If you really can't keep up with potassium needs, you may have no choice but to cut back on the methylation. Potassium deficiency, if present and severe, can be life-threatening.

Thank you. I have spine and brain pain and nausea daily. I don't think I metabolize things right. My illness has progressed and is very severe. Mb12 and methylfolate feel they start correcting these symptoms, but keeping potassium going is hard. Just can't get enough. I understand it's life threatening. Is very frustrating for me!
 

Eastman

Senior Member
Messages
526
I have spine and brain pain and nausea daily.

Those symptoms are not specific to potassium deficiency. And you apparently had them even before you started the methylation protocol. Do you have any other symptoms that might indicate a potassium deficiency?

Also, have you consulted a doctor for these symptoms? Had lab tests done?

Is Jarrow mb12 still good? I seem to have a better reaction to enzynatic therapy.

As far as I am aware, Jarrow's mb12 is no longer considered as good as Enzymatic Therapy's. See here.
 
Messages
87
Those symptoms are not specific to potassium deficiency. And you apparently had them even before you started the methylation protocol. Do you have any other symptoms that might indicate a potassium deficiency?

Also, have you consulted a doctor for these symptoms? Had lab tests done?
We've been to several doctors and hospital twice last week. Potassium was 4.1 after I had taken a lot of extra. I agree is not the only missing thing. I thing methylation stopping allowed for major sickness. All blood work keeps coming back normal even though I'm extremely sick. Thanks also for info on Jarrow!



As far as I am aware, Jarrow's mb12 is no longer considered as good as Enzymatic Therapy's. See here.
 

Eastman

Senior Member
Messages
526
4.1 is within the normal potassium range. On the other hand, as Freddd said: "Symptoms may appear with serum potassium as high as 4.3."

Still, spine and brain pain may be caused by something else. Are you seeing a specialist? What did he say?