Active B12 Protocol Basics

[TinaT]

Folinic acid does not work for me. It causes folate deficiency symptoms without the imporvment of getting refeeding symptoms.

Sorry I have a few more questions.

What are the main symptoms you associate with folate deficiency? And do you know whether folinic acid works or doesn't work for most people? How would I know that it's not working? What about leafy greens? I'm having a terrible time with methylfolalte. It causes pretty bad sore throat that lasts all day, and other allergy type symptoms, possibly worsening reflux.

 

[dannybex]

Thank you. I've just been nervous about taking more than 100-300 (using powder in water) without a confirmed deficiency. Still, I'm going to order this and try at least one to start. I know that I can handle at least 500 at this point.

Also, do you have any idea what would cause water retention? I have been taking folonic acid. But I'm getting slightly concerned about heart failure.

The RDA for potassium is 4200 milligrams, so I feel very safe taking 1/4 of that one to two times a day.

Water retention/edema can have many causes, but folate isn't one of them. Someone I consulted with suggested that during high stress we excrete sodium, so he recommended adding sodium for my edema -- and surprisingly, it helped. But again, there can be many reasons. Best to check w/your doctor.

 

[dannybex]

Why do you have to wait until 2 hrs after a meal? I'm just wondering bc I think I need some now, and I just ate. 🤔

Because I need what little acid I have to help digest the meal. So I wait a bit, then take the potassium bicarb.

 

[dannybex]

I'm having a terrible time with methylfolalte. It causes pretty bad sore throat that lasts all day, and other allergy type symptoms, possibly worsening reflux.

Typically b12, and methylfolate or folinic, should help lower histamine levels. It's one of the two ways histamine is degraded (the other being the DAO enzyme). But you also need methionine as part of that methylation. You can get that from eating more protein, or from l-methionine supplements.

 

[TinaT]

My worst current symptoms are reflux (which I now think means low potassium) and continued (bad) abdominal distension. Insomnia varies depending on how near or far from injections.

Sometimes now, like last night (two nights after hydroxy shot), I sleep great. I seem able to tolerate exercise a little better (other than the potassium, which is hell, but exercise doesn't cause inability to relax or sleep, which it was doing before). A lot of other symptoms have already greatly improved (after 4 methyl injections and 1 hydroxy). But right now reflux in my mouth is making me absolutely miserable. And the abdominal distension is just concerning...like could something in this protocol be causing heart failure (something related to potassium??)

Or can low potassium cause abdominal distension or water retention??

@dannybex I just read what you said about sodium. Wouldn't that screw with potassium even more? Also -- docs have told me that I have nerve damage causing my gastro issues...That's what led me to think of B12...But this seems different because not as much gas and more water.

Something I've taken or eaten is causing this, I think. It's just not normal, even for my screwed up situation. I was thinking low potassium would cause constipation, which causes bloating (which can then cause reflux). I wonder about water retention though...

Anyway thank you to everyone.

 

[TinaT]

So I think I have my answer:

"However, milder potassium deficiency can also cause unpleasant ailments such as general fatigue, water retention, swelling of the limbs, spontaneous tremors of the thighs or calves, and headaches."

I've had all of those things other than swelling of the limbs.

Source:

https://www.lifelinediag.eu/en/potassium-deficiency/

@dannybex thank you for the suggestion on the life extension potassium. I checked and I guess they no longer carry that type.

So I'm fairly confident this must be a potassium issue. That really is what I think. I keep taking about 200 mg powder every few hours (3 times today so far). I'm scared to take more. I wonder if I'm doing damage by not fully correcting the low potassium issue? I'm scared not just bc of the heart risk of too much potassium, but also because too much potassium makes my tinnitus get too loud.

Like can this excess water retention from potassium cause heart failure?? I guess that's my question.

 

[dannybex]

So I think I have my answer:

"However, milder potassium deficiency can also cause unpleasant ailments such as general fatigue, water retention, swelling of the limbs, spontaneous tremors of the thighs or calves, and headaches."

I've had all of those things other than swelling of the limbs.

Source:

https://www.lifelinediag.eu/en/potassium-deficiency/

@dannybex thank you for the suggestion on the life extension potassium. I checked and I guess they no longer carry that type.

So I'm fairly confident this must be a potassium issue. That really is what I think. I keep taking about 200 mg powder every few hours (3 times today so far). I'm scared to take more. I wonder if I'm doing damage by not fully correcting the low potassium issue? I'm scared not just bc of the heart risk of too much potassium, but also because too much potassium makes my tinnitus get too loud.

Like can this excess water retention from potassium cause heart failure?? I guess that's my question.

Here's a link to the potassium supplement on Amazon:
https://www.amazon.com/gp/product/B005CD3ZGG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

The body is very wise. It will balance potassium and sodium (etc) provided you give it enough to work with. I would strongly urge you to try not to catastrophize your symptoms. We've all done that, so please don't think I'm picking on you. It's common w/this illness. But many millions of people live with edema for decades and don't have heart failure.

I've had some edema now for about five years, but it gets better, then worse for a bit, then better. Three years ago it was TERRIBLE. Had deep pitting edema in both feet. But it's better by about 75%-80% since then.

Also, in my case, I've had a lot of food intolerances. Those are getting better too. I feel that once I'm able to increase the diversity of what I eat, and thus improve my overall metabolism (not to mention my gut microbiome, which affects everything), then the edema will resolve.

 

[TinaT]

The body is very wise. It will balance potassium and sodium (etc) provided you give it enough to work with. I would strongly urge you to try not to catastrophize your symptoms. We've all done that, so please don't think I'm picking on you. It's common w/this illness. But many millions of people live with edema for decades and don't have heart failure.
.

Hello. Thank you for all of the suggestions. I ordered the potassium although I'm sure I'll need to split that up.

I appreciate the warning not to catastrophize. I've just never had this and I'm sure, like totally sure, something from what I've taken is causing this. I'm just trying to figure that out, so that I can hopefully correct it. And yes definitely, I agree, with a healthy dose of catastrophizing along the way.

Also I guess the fact that Fredd had heart failure as part of refeeding, which I think is happening to me... Made the water retention more concerning.

I'm sorry to hear about what has happened to you.

Thank you again for all of your feedback and good suggestions. 🥰

 

[TinaT]

Is this true:

"Patients who take potassium chloride long-term, i.e., are at risk for developing vitamin B-12 deficiency. Potassium supplements such as K-Dur, Micro-K, Slow-K, K-Lyte, etc. interfere with the absorption of vitamin B-12 and can eventually lead to the depletion of body stores of this crucial vitamin."

If so, it seems like needing potassium would create an endless cycle.

Source:

https://hkpp.org/physicians/potassium-B-12-deficiency

@Idie @Freddd @chrism @dannybex

 

[Freddd]

What has of symptoms? I believe I've noticed bad allergy type symptoms after taking anything with methylfolate. I feel better for two days after methyl B12. But then get very miserable. I'm working my way through your biggest threads. I don't think I can handle high doses of methyl B12 bc of potassium despite adding about 1K at this point. I'm just trying any half doses of various vitamins including B minus, buffered C, electrolyte drink, fish oil, folonic acid, D.

Yes, after 2 or 3 days you developew more symptoms. Those tell you what you need to increase. Usually following an increase of methylfolate one needs and daily increase of potassium. That makes yoiu feel terrible and there are specific symptoms and clusters of symkptoms that tell you that and much more, each thing in need.

 

[Freddd]

Hello. Thank you for all of the suggestions. I ordered the potassium although I'm sure I'll need to split that up.

I appreciate the warning not to catastrophize. I've just never had this and I'm sure, like totally sure, something from what I've taken is causing this. I'm just trying to figure that out, so that I can hopefully correct it. And yes definitely, I agree, with a healthy dose of catastrophizing along the way.

Also I guess the fact that Fredd had heart failure as part of refeeding, which I think is happening to me... Made the water retention more concerning.

I'm sorry to hear about what has happened to you.

Thank you again for all of your feedback and good suggestions. 🥰

NO you have it 100% wrong. During 16 years of active CBL-C disease I developed congestive heart faiolure which is how most long survivimg CBL-C folks die of..

As I got various steps of methylation going I lost 45 pounds of water when I starte methylfolate instead of folic acid and then when I started carnitine I lost another 45 pounds of ewater in a month.

 

[TinaT]

That makes yoiu feel terrible and there are specific symptoms and clusters of symkptoms that tell you that and much more, each thing in need.

Okay thank you. I switched back to methyl injections today bc hydroxy made my reflux come back strongly. However, I only gave myself 500 mcg bc the potassium drop last time was too much. I also took half a B complex with methylfolate. Various other things including, so far today, 800 mg of potassium.

Can you just tell me: for you, what were folate deficiency symptoms?

And how much potassium did you take if you thought you were constipated bc of potassium?

I think I've figured out the worst potassium symptoms but I'm trying to do better so that I'm not constantly constipated. Plus my reflux seems to get better with shots then worse. I know sometimes that is potassium. But could that ever be folate? 🤔

Thank you!

 

[TinaT]

NO you have it 100% wrong. During 16 years of active CBL-C disease I developed congestive heart faiolure which is how most long survivimg CBL-C folks die of

Sorry for the misunderstanding. It's hard to know exactly what has happened since I'm jumping into the middle of decades of conversations. Thank you for explaining.

 

[dannybex]

Is this true:

"Patients who take potassium chloride long-term, i.e., are at risk for developing vitamin B-12 deficiency. Potassium supplements such as K-Dur, Micro-K, Slow-K, K-Lyte, etc. interfere with the absorption of vitamin B-12 and can eventually lead to the depletion of body stores of this crucial vitamin."

If so, it seems like needing potassium would create an endless cycle.

Source:

https://hkpp.org/physicians/potassium-B-12-deficiency

@Idie @Freddd @chrism @dannybex

First of all, we have no idea how much potassium was used in the studies, and we have no details on what this blogger's definition of 'long-term' is -- both of which are critical to know. Also, experiments often use insanely huge amounts (typically in rats, not humans) to cause some sort of reaction.

Plus, none of the forms mentioned above are potassium bicarbonate -- they look like drug-based forms, which probably have other ingredients that may be causing an interference.

Again, the body knows how to keep a tight regulation on these things. And thousands of people have taken potassium or increased it in their diet, and it hasn't tanked their B12.

Whenever you come across some statement online, see if you can find studies to back up the claims.

 

[TinaT]

Again, the body knows how to keep a tight regulation on these things. And thousands of people have taken potassium or increased it in their diet, and it hasn't tanked their B12.

Whenever you come across some statement online, see if you can find studies to back up the claims.

The first point is a good one.

Just letting you know -- I didn't read the studies (other than the titles). But that quote was backed by 3 studies. I'm a very critical thinker and actually used to analyze pretty sophisticated data and research as part of my career. I know the difference between a random blog post and a decent study. However, I read a lot of things and consider everything.

Anyway this potassium thing is horrible tonight. Really, really bad.

 

[tooth]

@Freddd

Any thoughts or experiences with B12 in suppository form?

I have pretty severe neuro damage (numbness in whole body, neuropathy in hands & feet) from being deficient. Long family history of Pernicious Anemia and schizophrenia that is fully treatable with B12 & folate.

Sublingual not been enough for me over the years. Injections were not accessible. Been making B12 suppositories with 30mg+ of hydroxy (it was all I could get in powder form at the time, will get methyl on next China run). Dementia and personality changes finally going away. Vision so much better.

Wondering if you'd tried this route. I like it as I can do the high dosages required for actual healing.

 

[dannybex]

The first point is a good one.

Just letting you know -- I didn't read the studies (other than the titles). But that quote was backed by 3 studies. I'm a very critical thinker and actually used to analyze pretty sophisticated data and research as part of my career. I know the difference between a random blog post and a decent study. However, I read a lot of things and consider everything.

Anyway this potassium thing is horrible tonight. Really, really bad.

The studies weren't using regular forms of potassium. Also, like this one, the reason the 'slow-potassium' inhibited B12 -- just slightly -- was because it interfered with it in the small intestine. Not sublingually.

 

[TinaT]

The studies weren't using regular forms of potassium. Also, like this one, the reason the 'slow-potassium' inhibited B12 -- just slightly -- was because it interfered with it in the small intestine. Not sublingually

Thank you for taking a look, and explaining.

Right now, I'm actually wondering about sodium. My diet isn't really normal. I eat almost totally whole foods. So the only sodium I get is from putting salt on my food, which I do.

But all of this potassium, I mean how does that affect sodium? I drank potassium throughout the night (just plain powder in water). Then I drank another 450 mg in water first thing in the morning. I guess it could have been in my mind but I started having chest pain (I have no heart conditions of which I'm aware and I've had many tests). So I stopped.

About an hour and a half later, I was feeling more and more tired. My BP was very low and my heart rate was high. I've been associating this with low potassium bc those are listed on the Cleveland Clinic website as symptoms of severe low potassium. (Sometimes my HR is high but more often very low, usually with extreme tiredness, and sometimes muscle twitching, when I decide to take potassium.)

This has really confused me bc normally I would think potassium would lower your BP.

Anyway, today I was even more suspicious bc I had just taken a large dose of potassium 1.5 hrs earlier, and had very little relative sodium since dinner last night. And that B12 consultant lady actually suggested sodium (I emailed her to ask if she had seen this before.) I did the elliptical machine yesterday so would have lost electrolytes that I may not have replaced, including sodium. I had real issues last night with what I thought was low potassium (BP started low then went high.)

I had no problems balancing electrolytes naturally before the B12 shots. I'm totally perplexed.

I have been assuming this is all potassium bc that's a known risk of the shots. But both low potassium and low sodium apparently can cause low BP and high HR.

I just don't know how we can possibly know without constant monitoring and testing. Or i guess the fall back would be to add sodium to every potassium drink. But then if only one or the other were out of balance, I don't see how that would work, either.

@Freddd do you have any ideas based on the cases you've seen?

 

[Freddd]

The first point is a good one.

Just letting you know -- I didn't read the studies (other than the titles). But that quote was backed by 3 studies. I'm a very critical thinker and actually used to analyze pretty sophisticated data and research as part of my career. I know the difference between a random blog post and a decent study. However, I read a lot of things and consider everything.

Anyway this potassium thing is horrible tonight. Really, really bad.

If I have to take a 200 mg more of potassium Then I ad it to my base for every day. It isn't about "extra" doses, it's about titrating to the amount you need is steady if you are taking the rate of cell making with the same B12 and methylfolate doses. It sounds like you are taking "extra" when it is really a titration. At the maximum I needed 4000 mg of potassium each day for the rate of healing I had. Now I am taking about 300 mg additional AND my lithium is 8 years out now and it has made a HUGE difference in homeostasis.

 

[TinaT]

It sounds like you are taking "extra" when it is really a titration

It's just impossible to know how much you really need. I've only been taking it when I feel like I need it. Other than yesterday -- I took it before needing it, on the advice of someone else in this forum, and based on what worked the day before. I can't continue that bc I included a high potassium electrolyte drink, which made my throat hurt all day.

Today I had the same amount in the morning (except this time straight potassium), and had chest pains before finishing the same 500 mgs. So I hadn't had much sodium and worked out yesterday (sweat). I don't eat much sodium in general.

So today I thought maybe I need sodium. I thought it would be dangerous to keep drinking potassium with chest pains.

After drinking sodium, my heart rate and BP shot up 20 points. And I almost fainted, felt extremely unwell, actually felt a little like the live was fading g from me (possibly just like I was going to faint), easily the worst I've felt throughout this entire ordeal. I was confused when my friend called. I didn't know what I needed. So I again drank the electrolyte drink. And within 30 min my BP and me were both back to normal.

I keep reading the low potassium symptoms. I've probably read them hundreds of times. But many of them theoretically could be caused by other things. Like low sodium, just as one example.

And even if you just assume it's low potassium, bc that's what is likely, there is no way to know how much is enough versus too much. As you have said, the needs change.

This is a very dangerous game and I'm really not sure I'm going to survive this. I hope that I get lucky. This should be monitored by blood work every few hours and cardiac monitoring, constantly.

Anyway, can you please tell me: how long do the highest potassium needs last? 2 weeks? 6 weeks? Two months? Or much longer?

And do you believe that folonic acid can actually impair healing? My potassium still drops when I take it (and it's way easier to handle). So doesn't that mean I must still be healing?