Active B12 Protocol Basics

[YippeeKi YOW !!]

Here’s some information for new and future readers of this thread, since I’m sure it’s all old news to current posters ….methylation issues can compound this considerably, making it harder to deal with effectively, or sometimes at all, without continuous and lengthy experimentation and trialing ….

Vitamin B12 (and folate) have numerous critical functions our bodies, including keeping the nervous system running smoothly, which is one of the reasons that B12 / folate deficiencies can be so difficult to cope with.

A deficiency in either B12 and/or folate can cause a wide range of problems, including:

• extreme tiredness
• an overall lack of energy
• pins and needles (paraesthesia)
• a sore and red tongue
• mouth ulcers
• muscle weakness
• disturbed vision
• psychological problems, which may include depression, and confusion
• problems with memory, understanding and judgment

PSYCHIATRIC SYMPTOMS, APART FROM THE ABOVE
The most prevalent symptoms associated with B12 deficiency include delusions, irritability, and decreased interest in pretty much everything.

One of the problems with B12 deficiency is that it can mimic, to a surprising extent, the primary symptoms of ME, like brain fog, memory and cognitive problems, physical fatigue, muscle fatigue and sometimes pain, depression, and tingling in the extremities, which can express as restless leg syndrome, something that seems to affect quite a few of us, either occasionally or, for the unlucky few, all the time....

There is of course, a lot more to all this, but I thought a sort of primer might be helpful for new members, or new readers of this thread down the line, who are just getting acquainted with all the creepy ways this crafty little bastard of an illness can mess with us. At least, I hope it is ....

 

[JES]

Here is one source talking about both heartburn and fatigue (other sources specifically mention inability to recover from exercise):

http://www.b12d.org/protocoltreatment

This is a random website, which doesn't look professional. It lacks https and all their social media links on bottom are broken. The web is unfortunately full of websites advertising various vitamin or mineral protocols that are supposed to cure "disease X". Yes, B12 deficiency is obviously a real thing, but I have no way of verifying that the rest of the information on this website is scientifically reputable.

Nitrous oxide is known to deactivate B12.

B12 gets stored in the liver, so your body would always have some degree of reserve. A single dose of nitrous oxide is almost certainly not going to deactivate the B12 stored in your liver. It would at most affect blood levels temporarily. The only thing I could find on the Internet about nitrous oxide causing B12 deficiency was in people who abused it and took it regularly.

Long term antacid use is known to reduce B12. And a B12 deficiency definitely can damage nerves.

This is correct. Long-term strong proton pump inhibitors will affect B12. This in turn can over a *long* period of time cause nerve damage, which is typically peripheral neuropathy, sensory loss, etc. This is something I was dealing with and attributed to B12 before I learned that peripheral neuropathy can be caused by a hundred other things. You didn't mention you had these type of symptoms, though.

I also developed constipation and abdominal distension. I was told that vagal nerve damage caused partial gastroparesis (i.e., partial paralysis of my digestive system). And that vagal nerve damage causes reflux.

Disclaimer: I'm not a doctor, but when I read your symptoms, I actually was thinking about vagus nerve before I read the passage above. B12? Perhaps, but again, vagus nerve damage or dysfunction, rather, is caused by a hundred other things. There are actually ways to activate the vagus nerve through various "exercises" or even devices you can wear, so that's something I would suggest you look into.

This is now getting off topic of this thread, but the second thing I would suspect is food allergies and something called MCAS (mast cell activation syndrome). MCAS is typically treated with histamine H1 and H2 receptor blockers such as benadryl (H1) or famotidine (H2).

 

[YippeeKi YOW !!]

This is a random website, which doesn't look professional. It lacks https and all their social media links on bottom are broken

I tried to check it out, but my security software wouldnt even open it, stating "Not a secure website" ..... so I really don't have much of value to add to this.

 

[YippeeKi YOW !!]

You are right not everyone has found a solution BUT many have,

Solution to what? The B-12 issues? Or ME?

And how many is 'many'? And where did that information come from?

 

[YippeeKi YOW !!]

The book says basically even tests can be in range and, depending on history and symptoms, a trial of B12 might be indicated.

What book are quoting this information from?

And the last thing is that not everyone can recover from a B12 deficiency. The book says that with neuro damage, recovery is about 50/50, though most people at least improve.

It's my understanding that unless you have a cirrhotic liver or other serious liver disease, like liver cancer, it's unlikely that you can't recover from B12 deficiency, so I'd be interested in more input on this info ... maybe a genetic SNP or flaw? The liver is capable of storing a year or more worth of B12 at any iven time ....

Recovery from B12 deficiency neuro damage is usually 100%, although it's often a slow process, requiring dedication to a treatment plan and the determination to see it through, due to the length of time required .....

Regular use of anti-acids or any medication that inhibits, neutralizes, or suppresses the production of stomach acid is going to create difficulty in the absorption of B12, but once the use of those OTC or prescription meds is stopped, B12 should gradually return to normal absorption and levels.

 

[Freddd]

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?

Let me say it this way. I titrated methylfolate up from 200 mcg per day and and ended up at 30 mg in 4-6 doses, or 45mg in 3 doses. Now that isn't working for me and back up to 37.5mg (5x7.5mg)which works very well. So first, due you really believe that 400 or 800 mcg is useful when one needs 30 -45 mg? A part of it is that serum half life is about 3 hours for methylfolate where as non-converted folic and presumably folic and folacin acids accumulate and occupy the receptors without working or some such blockage. The 400 mcg dose was so as to protect people form thinking their blood problem is fixed so they don't need to take B12. That can be very damaging.

It is nowhere as easy to take too much potassium as unless there is kidney disease as you seem to think. And every time you make an increase in healing or start healing a different tissue the more potassium you need.

it can be quite steady if you titrate properly for things that change the healing equation of nutrients. You78 are making it much more difficult for yourself my not titrating responsively.

 

[Freddd]

Days 3 and 4 are telling you how much potassium you need to add for continual healing.

I take copper daily. After 5 years of lithium however I accumulated copper and only have to take it if it goes down too much. How well is your homeostasis working? I get tested each 3 months. There are some things I appear to absorb very poorly orally and vit D not at all orally.

My experience is that my nerve healing took 9 months without missing a dose for continuous healing.

 

[TinaT]

actually was thinking about vagus nerve before I read the passage above. B12? Perha

The reality is that B12 supplements (and / or iron, because I've been taking both) have been helping. A lot. I've tried absolutely countless other things over the last year including meds designed to heal the problem according to Dr Jamie Kouffman. If the placebo were going to work, that would have happened a long, long time ago. The results have been truly remarkable. And I've read several other people online who claim to have had similar experiences with reflux.

 

[TinaT]

is nowhere as easy to take too much potassium as unless there is kidney disease as you seem to think

I'm having a real problem with low blood pressure. I can't decide whether that means I'm low or high in potassium. So when I'm constipated, and I think the reason is low potassium, my BP is usually also low (occasionally high but usually low). So I'm afraid to take more potassium, which could make my BP drop even lower.

Like let's say before taking potassium, my BP might be 106 over whatever. Then I take 300 mg of potassium, and my BP drops again to 98 over whatever. What I think is gastroparesis continues to be worse than before the B12 supplementation (when I had it, but not as bad). Basically, I can't seem to handle enough potassium to resolve the constipation without way too low BP. I guess it's possible that the low K is causing the low BP and just moving so fast that it continues dropping even after supplementing? But that seems very risky to assume without testing.

I'm just trying to keep my BP in a normal range. Do I have to perfect potassium to heal? I'm not sure how I can possibly do that with the scary low BP in experiencing (this is all new with the shots -- never a problem before -- I'm also taking other supplements that could lower BP including buffered C with potassium).

I am trying to increase methylfolate. I stopped the folonic acid. I'm afraid to take methylfolate in the evening bc of warning on bottle not to take within 5 hrs of trying to sleep. But morning and midday, I'm taking 1.5 mg with plans to try and increase.

I'm injecting 500 mcg daily of B12. Planning to check your zones to see if that's enough.

Fred, based on your data, did B12 deficiency cause reflux? Maybe it relates to anxiety, since a B12 deficiency would cause anxiety -- and anxiety can cause reflux.

Also Fred, I FELT LIKE A MILLION DOLLARS YESTERDAY AFTER TAKING METHYLFOLATE!!!! I took about 3 mg, with plans to increase.

I'm still really bloated though. So last night after dinner was not so great. I'm hoping higher doses of methylfolate will help with water retention, though I think it's a mix of constipation from gastroparesis and water retention. I really, really wish the slow stomach emptying would get better like everything else has been doing.

Still, I can't thank you enough for the time you have put into developing this protocol over decades, and trying to explain the complexities.

 

[TinaT]

There are actually ways to activate the vagus nerve through various "exercises" or even devices you can wear, so that's something I would suggest you look into.

According to the world leading reflux doc, the available evidence that I've been able to find, and my own experience, vagal nerve exercises are useless.

 

[TinaT]

This is a random website, which doesn't look professional.

I build websites. Those problems could just be that they haven't updated the site. Not great but doesn't mean the info is incorrect. If you download the protocol, it sounds very legit to me. They claim that their sources are the BMJ Best practice and Harrison's Internal medicine. Those are paid services so I can't confirm.

have no way of verifying that the rest of the information on this website is scientifically reputable.

I have no way of confirming that information gathered across the Internet by AI is scientifically reputable.

Also, the AI answer says that B12 deficiency can cause constipation. Several gastro docs, including Dr.B (author of Fiber Fueled, and board certified gastro doc) have told me that resolving constipation often resolves reflux. So the AI answer doesn't even make any sense from that perspective. Meaning constipation causes reflux. So if a B12 deficiency causes constipation, then by definition it could also cause reflux.

single dose of nitrous oxide is almost certainly not going to deactivate the B12 stored in your liver. It would at most affect blood levels temporarily.

The book "Could it be B12?" doesn't agree (about one surgery, much less 3 procedures, potentially causing a serious B12 problem in those who are already low, which I would have been. They recommend testing and then injections before and after any surgery). That book was written by a nurse and doctor who specialize in B12 treatment. I guess they are wrong, too?

They also say that a B12 deficiency can cause gastroparesis, which causes reflux. See attached page from book.

See also this study (I didn't check for more):

https://pubmed.ncbi.nlm.nih.gov/16948779/
I have been taking a mix of vitamins so it is possible that everything is contributing. My severe reflux, which has been totally recalcitrant to any and all treatments, has remarkably improved over one month, since starting B12, iron, a multi vitamin, methylfolate, buffered C, DHA, and a B complex. So take your pick.

Also -- Dr Jamie Kouffman and Dr Jonathan Aviv, both of whom I consulted, and basically the leading reflux docs in the world (and authors of several studies and books on reflux) both said I had vagal nerve damage from the surgery causing reflux.

B12 undeniably impairs nerve function.

Why wouldn't B12 affect the vagal nerve? Are we saying B12 affects other nerves, but not the vagal nerve? That doesn't make any sense. And if B12 affects the vagal nerve -- then B12 can cause gastroparesis and associated constipation and reflux.

This is correct. Long-term strong proton pump inhibitors will affect B12. This in turn can over a *long* period of time cause nerve damage

There are many sources online saying that pepsid can cause the same thing. And I was taking very high doses. In fact, my belief after I'm guessing way more experience is that pepsid ultimately worsens reflux, probably by worsening B12 deficiency among a list of other problems. It's toxic and should be avoided.

 

[Freddd]

I'm having a real problem with low blood pressure. I can't decide whether that means I'm low or high in potassium. So when I'm constipated, and I think the reason is low potassium, my BP is usually also low (occasionally high but usually low). So I'm afraid to take more potassium, which could make my BP drop even lower.

Like let's say before taking potassium, my BP might be 106 over whatever. Then I take 300 mg of potassium, and my BP drops again to 98 over whatever. What I think is gastroparesis continues to be worse than before the B12 supplementation (when I had it, but not as bad). Basically, I can't seem to handle enough potassium to resolve the constipation without way too low BP. I guess it's possible that the low K is causing the low BP and just moving so fast that it continues dropping even after supplementing? But that seems very risky to assume without testing.

I'm just trying to keep my BP in a normal range. Do I have to perfect potassium to heal? I'm not sure how I can possibly do that with the scary low BP in experiencing (this is all new with the shots -- never a problem before -- I'm also taking other supplements that could lower BP including buffered C with potassium).

I am trying to increase methylfolate. I stopped the folonic acid. I'm afraid to take methylfolate in the evening bc of warning on bottle not to take within 5 hrs of trying to sleep. But morning and midday, I'm taking 1.5 mg with plans to try and increase.

I'm injecting 500 mcg daily of B12. Planning to check your zones to see if that's enough.

Fred, based on your data, did B12 deficiency cause reflux? Maybe it relates to anxiety, since a B12 deficiency would cause anxiety -- and anxiety can cause reflux.

Also Fred, I FELT LIKE A MILLION DOLLARS YESTERDAY AFTER TAKING METHYLFOLATE!!!! I took about 3 mg, with plans to increase.

I'm still really bloated though. So last night after dinner was not so great. I'm hoping higher doses of methylfolate will help with water retention, though I think it's a mix of constipation from gastroparesis and water retention. I really, really wish the slow stomach emptying would get better like everything else has been doing.

Still, I can't thank you enough for the time you have put into developing this protocol over decades, and trying to explain the complexities.

Edema appears to caused by prolonged poor cell making-methylation. Feel all good all day for a week and possibly the excess water can start pouring pout which will put more potassium out of you, be prepared.

 

[TinaT]

Edema appears to caused by prolonged poor cell making-methylation. Feel all good all day for a week and possibly the excess water can start pouring pout which will put more potassium out of you, be prepared.

Have you seen people have low BP from low potassium? The Cleveland clinic website says that low BP is a symptom of low potassium. But most people seem to get high BP with low potassium.

 

[Idie]

I build websites. Those problems could just be that they haven't updated the site. Not great but doesn't mean the info is incorrect. If you download the protocol, it sounds very legit to me. They claim that their sources are the BMJ Best practice and Harrison's Internal medicine. Those are paid services so I can't confirm.



I have no way of confirming that information gathered across the Internet by AI is scientifically reputable.

Also, the AI answer says that B12 deficiency can cause constipation. Several gastro docs, including Dr.B (author of Fiber Fueled, and board certified gastro doc) have told me that resolving constipation often resolves reflux. So the AI answer doesn't even make any sense from that perspective. Meaning constipation causes reflux. So if a B12 deficiency causes constipation, then by definition it could also cause reflux.



The book "Could it be B12?" doesn't agree (about one surgery, much less 3 procedures, potentially causing a serious B12 problem in those who are already low, which I would have been. They recommend testing and then injections before and after any surgery). That book was written by a nurse and doctor who specialize in B12 treatment. I guess they are wrong, too?

They also say that a B12 deficiency can cause gastroparesis, which causes reflux. See attached page from book.

See also this study (I didn't check for more):

https://pubmed.ncbi.nlm.nih.gov/16948779/
I have been taking a mix of vitamins so it is possible that everything is contributing. My severe reflux, which has been totally recalcitrant to any and all treatments, has remarkably improved over one month, since starting B12, iron, a multi vitamin, methylfolate, buffered C, DHA, and a B complex. So take your pick.

Also -- Dr Jamie Kouffman and Dr Jonathan Aviv, both of whom I consulted, and basically the leading reflux docs in the world (and authors of several studies and books on reflux) both said I had vagal nerve damage from the surgery causing reflux.

B12 undeniably impairs nerve function.

Why wouldn't B12 affect the vagal nerve? Are we saying B12 affects other nerves, but not the vagal nerve? That doesn't make any sense. And if B12 affects the vagal nerve -- then B12 can cause gastroparesis and associated constipation and reflux.

There are many sources online saying that pepsid can cause the same thing. And I was taking very high doses. In fact, my belief after I'm guessing way more experience is that pepsid ultimately worsens reflux, probably by worsening B12 deficiency among a list of other problems. It's toxic and should be avoided.

Edema appears to caused by prolonged poor cell making-methylation. Feel all good all day for a week and possibly the excess water can start pouring pout which will put more potassium out of you, be prepared.

Hello Idie. I've spent the day reading this forum. Wow there's a lot to learn and so much history. I'm sure you must have read that Fredd advises cutting other B vitamins if necessary to avoid potassium that's out of hand. I need to check my B vitamins for the dosages he recommends.

I have a question for you. I have read and understand now that he really thinks these large doses are necessary for healing. That's really depressing to me for a lot of reasons. I've struggled SO much before even reaching this forum and discovering what I now think is a profound deficiency. I really, really wanted to stick with the lower doses and the potassium situation is still terrifying to me.

Anyway -- my question is -- does the methylfolate affect your sleep? Bc one of the brands of methylfolate that I have (from seeking health) says that it must be consumed within 5 hrs of sleeping to avoid sleep interference. For me, that kind of warning usually means more like 8-10 hrs before sleeping.

What do you think? Does taking methylfolate at bedtime bother you?

I ordered the brand of methylfolate you suggested today. Thank you.

Hi Tina——folate does not seem to affect my sleep (when i get some). The thing that does really affect the “lack” of sleep is low B12. Even when I was doing well last time, if I was having a hard time going to sleep, I would put a few sublingual under my tongue and it worked every time. B12 for me, gets rid of a lot of sleep problems but it takes a while when one has been deficient for so long.

 

[Idie]

Hi Tina——folate does not seem to affect my sleep (when i get some). The thing that does really affect the “lack” of sleep is low B12. Even when I was doing well last time, if I was having a hard time going to sleep, I would put a few sublingual under my tongue and it worked every time. B12 for me, gets rid of a lot of sleep problems but it takes a while when one has been deficient for so long.

I see that you are having some improvements which is so great. Sounds like acidreflux is better, and the addition of more folate is helping. I had a tough low potassium moment yesterday. All of a sudden intense weakness that almost brought me to my knees. It took at least 30-40 minutes after I took 350 mg of potassium for it to lessen and then for the next 6-7 hours it was constant dosing of potassium until 2 am. The evenings and nights are still challenging but I’m hoping for improvement. If I the does of b12 and folate too late then I’m up dosing potassium.….too early and I am unable to get enough doses in . I hope you keep getting improvements

 

[Freddd]

Have you seen people have low BP from low potassium? The Cleveland clinic website says that low BP is a symptom of low potassium. But most people seem to get high BP with low potassium.

I've usually have lower potassium with enough potassium and higher BP from too low potassium.

 

[TinaT]

I see that you are having some improvements which is so great. Sounds like acidreflux is better, and the addition of more folate is helping. I had a tough low potassium moment yesterday. All of a sudden intense weakness that almost brought me to my knees. It took at least 30-40 minutes after I took 350 mg of potassium for it to lessen and then for the next 6-7 hours it was constant dosing of potassium until 2 am. The evenings and nights are still challenging but I’m hoping for improvement. If I the does of b12 and folate too late then I’m up dosing potassium.….too early and I am unable to get enough doses in . I hope you keep getting improvements

Hi Idie! I keep having little things I want to tell you, but I always want to spend time writing a full explanation. Then I wait so that I can write a proper answer. Then something else comes along. Lol.

I'm at a loss with potassium. I can't figure out whether my low BP is low potassium. Occasionally it's high but usually low. Then I'm afraid to take potassium -- even though that might be what I need to fix it.

I'm really sorry about your weakness experience. I've definitely had that feeling, too.

Do you ever have the feeling that food isn't moving through after you eat? Potassium can cause this. And I think low B12 can, too. That happens with the low BP at night. I think the bloating is a combo of water retention and food not moving. And I just don't know what to do at those times.

 

[Freddd]

Low potassium can cause gut paralysis. It's been my "oops, time for more potassium" signal when my healing increases.

 

[Freddd]

After 5 - 7 years of 5-20 mg of lithium orotate my minerals are closing in on their homeostasis range and that includes potassium and potassium all over the place with CBL-C disease. With the lithium after 5+ years my homeostasis is working far better than ever before in my life

 

[TinaT]

took at least 30-40 minutes after I took 350 mg of potassium for it to lessen and then for the next 6-7 hours it was constant dosing of potassium until 2 am.

How did you do this exactly? Was that 350 every hour? Sounds like a really scary night.

I know the idea is to heal faster but my thought is that it seems better to avoid severe potassium deficiencies. I do eat a very high potassium diet as an almost vegan. I have added meat but very little -- the rest is whole food, plant based.

Right now for lunch I'm eating a "banana sandwich." Basically: banana, 1.5 slices ezekial bread, homemade peanut butter, a little honey, and 1.5 c plain soy milk (not fortified). That's almost / about 1500 mgs of potassium. My breakfast was probably high. And my dinner will be high.


At night, if my BP is getting low, I make a banana smoothie with soy milk, banana, and protein powder. That usually seems to help stabilize my BP. I just can't keep eating so close to bedtime bc that is something that can make reflux get worse again. And that doesn't help the constant bloating.

I did read a refeeding case study where they used a high potassium diet (only). But the guy was getting much lower doses of B12 by injection every day (100 mcg), and iron, for 14 days.