Active B12 Protocol Basics

[HurrySaveMe]

Glutathione causes massive "CATESTROPHIC" B12 DEFICIENCY in a day or two. It is dangerous. As I have decent B12 system now after 7 years of lithium making TCR-Li I have a very well working B12 system with a 24 hour half-life estimated. instead of the 20-50 minutes after an injection without a working lithium-B12 system. I can't tell the difference between MeCbl brands any more and haven't been able to for many year now. And some of the things may be specific to certain people by chance of what is the cause.

I like injections from a compound pharmacy. I don't know about the amount absorbed but I can clearly feel a very positive improvement from injecting 1 mg daily. I'm also trying several brands that include dibencozide from iherb and Amazon -- one day per week. I have only tried a quarter pill so far and that gave me a strong flushing type feeling (weird bc no niacin was involved). Maybe that's the wrong word. But the somewhat intense reaction only lasted for a few minutes. Otherwise, I didn't notice much of any effect. Obviously the dosing may be the issue there

NOW has a 10,000 mcg (10mg) sublingual. I have used that and it has been effective for me. The other brand is Nature’s Way B12 Infusion Methylcobalamin. I have only found that at iherb. It is 1,000 mcg or 1 mg sublingual.

Do you guys also take methylfolate together with the B12? Vimergy B12 is by far the most effective B12 I've taken, but it also contains Adenosylcobalamin together with methylcobalamin, is that a good thing or should I take them separately instead? I ask because when I took Vimergy B12 I got startup side effects like red dots on the skin of my hand, and a yellow mark on my thigh. These went away after I stopped the Vimergy B12, I'm just wondering if starting both methyl and adenosyl B12 at once is too much for me?

 

[Idie]

@Freddd I've read several sources saying that B12 injections can cause heart failure. One even said that heart failure is a common side effect. That's hard to believe. But do you know why that would be? And any water retention seems concerning -- doesn't that have to be something pretty bad like heart or liver failure? I definitely am getting paranoid esp since my blood pressure keeps dropping with the shots (at which time, I feel very weak and tired). I did read another source that said folate deficiency can cause low BP. I'm just nervous about continuing shots without a full cardiac workup (which obviously would delay shots and I really don't want to do). I guess for whatever reason, sublingual doesn't have the same risks. I really can't figure out why injections would have more risks. Have you heard of heart failure risk with injections? And do you think I should try switching to sublingual for a while? And do you still believe in leaving tab in mouth for 90-120 min?

Hi Tina——I have never heard that B12 injections could give you heart failure. Something is amiss.

On another note, I found a whole thread started by Mary in 2011 (I believe) regarding the low blood pressure and a couple of people who had it. They also had low potassium with B12 deficiency. They were advised as I recall reading it to take potassium for the low potassium problems. Anyway, I read it at 3 am when I was not sleeping (never closed my eyes once last night, those times are the worst). I will try to locate it specifically for you.

 

[TinaT]

Hi Tina——I have never heard that B12 injections could give you heart failure. Something is amiss.

On another note, I found a whole thread started by Mary in 2011 (I believe) regarding the low blood pressure and a couple of people who had it. They also had low potassium with B12 deficiency. They were advised as I recall reading it to take potassium for the low potassium problems. Anyway, I read it at 3 am when I was not sleeping (never closed my eyes once last night, those times are the worst). I will try to locate it specifically for you.

Idie, Thank you!! I'm sorry you didn't sleep. That is the absolute worst. Truly. I have felt your pain many times. What do you think is causing you not to sleep? I really hate taking medications. But since this all started I have kept a prescription of Zolpidem (Ambien), and low dose melatonin, in my nightstand. I rarely take either but there are times when I just break down and am really thankful to have one or the other.

One thing that I have done on really bad nights is first take 1 mg of melatonin, which usually puts me to sleep, but often causes me to wake in 4 hrs. Then I either stay awake reading for an hour, and go back to sleep, or, if it's a really bad night, then I take a Zolpidem. That whole thing at least gets me 4 hrs of regular sleep and then another 3 hrs of not so great (Zolpidem induced) sleep.

Another thing one doc told me that helped -- focus only on a sound in the room. Do not let your brain think about other things. This is basically meditation but that advice usually helps me, unless I'm really wired mentally *or* chemically just screwed up like from supplements. Those nights are the absolute worst.

As for my situation, I assume / hope / pray that I'm being overly paranoid. I had bloating before from my gastro issues, and was hoping the B12 would help. But this all just seems worse since I started the shots (the bloating). I could be wrong there, too. Bloating is hard to measure.

As far as my BP, that has been totally perplexing, but I just found these studies:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4868331/#pone.0155801.ref005
https://pubmed.ncbi.nlm.nih.gov/24906471/
Those seem to make it clear that folate supplementation can lower BP (which would make me weak). So I guess maybe I'll need to lower my folate supps just to the point that my BP is tolerable. This has been scary. I'm assuming maybe that's my problem. I would love to read whatever you found in the wee hours of the morning. I do really worry that the low BP could be potassium -- but again that is scary bc potassium normally lowers BP. So I never want to take potassium with BP sitting at 94 or 96 or something. (Normally my BP is about 115 / 117).

As far as the heart failure, that has me slightly concerned. I don't know how B12 injections would cause heart failure but numerous sources including Drugs.com (might be bogus; I have no idea) say that this is a possibility. I'm concerned enough that I booked a cardiology appt next week. Again, I'm assuming / hoping / praying that this falls into the category of totally overdone health anxiety. It's just that nothing would surprise me at this point.

Thank you for sharing whatever you are able to find!!

 

[TinaT]

Do you guys also take methylfolate together with the B12? Vimergy B12 is by far the most effective B12 I've taken, but it also contains Adenosylcobalamin together with methylcobalamin, is that a good thing or should I take them separately instead? I ask because when I took Vimergy B12 I got startup side effects like red dots on the skin of my hand, and a yellow mark on my thigh. These went away after I stopped the Vimergy B12, I'm just wondering if starting both methyl and adenosyl B12 at once is too much for me?

I'm the new kid on the block (totally). I have taken both on the same day without problems. Even though it's the most effective, it sounds like it might be better to try something else -- since you seem sure that is causing the bad effects. With other kinds of supplements, I've noticed huge variations in my reaction to what should be the same vitamin or nutrient. Also, I like the injections because, with those, I'm sure at least I have one solid dose of B12, then whatever is absorbed sublingually, in my mind, is a bonus.

 

[HurrySaveMe]

I'm the new kid on the block (totally). I have taken both on the same day without problems. Even though it's the most effective, it sounds like it might be better to try something else -- since you seem sure that is causing the bad effects. With other kinds of supplements, I've noticed huge variations in my reaction to what should be the same vitamin or nutrient. Also, I like the injections because, with those, I'm sure at least I have one solid dose of B12, then whatever is absorbed sublingually, in my mind, is a bonus.

What dose do you take of methyl and adenosyl B12 each? I'm thinking I might've taken too much at once causing the startup symptoms, someone told me it's excess homocysteine leaving the body. Do you also take methylfolate with it? Or just B12 on it's own?

 

[TinaT]

What dose do you take of methyl and adenosyl B12 each? I'm thinking I might've taken too much at once causing the startup symptoms, someone told me it's excess homocysteine leaving the body. Do you also take methylfolate with it? Or just B12 on it's own?

I've primarily been taking methyl, and not the doses recommended by Fredd (you should check his protocol at the start of this page). I started with 5 mgs in one shot, every 3-9 days (it varied). After about 4 weeks, I switched to 1 mg every day. So far that seems easier to tolerate. I haven't done the higher doses bc my BP is dropping and I'm not comfortable supplementing with excessive potassium. I also take methylfolate. Again, not as high as is recommended here. My dosages started around 400 mcg, then I gradually over a few days went up to 6 mg. That caused me bad symptoms including very loud tinnitus (which I just can't stand) and insomnia. So I went back down to about 3.5 today. I'm still experimenting. I don't think I have the answers. You should follow others. Also reading through this thread (which I'm still doing) -- you will learn more.

I only took adenosyl once, and only 1/4 of a tab (a few days ago). My reaction wasn't too extreme. So I'm planning to take that at least once a week. It's a combo lozenge with methyl. Otherwise, I'm just taking methyl, and playing around with the dosages and timing of everything, with a notebook to take notes, trying to find what might help the most.

I'm planning to stop daily injections as soon as my improvement stops, per various guidelines online. However, so far, when I stop for even one day, ALL of my deficiency symptoms come raging back, and it's just miserable.

 

[TinaT]

I'm so frustrated bc I'm almost positive this is low potassium!! I found a couple more medical resource type sites last night saying low K causes low BP. And of course low K causes constipation, which causes worse and worse bloating then reflux -- all the worst B12 deficiency symptoms that were the main reason I started B12. And now at least the bloating is much worse. But that's starting to cause reflux to get worse again. It's hard to explain but I can tell that those improve then go backward and I'm pretty sure low K is the reason.

Jesus Christ.

Will this low K continue even if I stop needing B12 so frequently?!! Or can I just wait it out? How dangerous is chronic low K? I know no one really knows but I wish I could find a doctor who did

 

[Methyl90]

Question addressed to all, if there is a correlation.

Are the appearance of vertical cuts in the lips (not in the creases) signs of healing or a warning of an imminent methyl trap or partial ? have you ever noticed?

Thank you

 

[JES]

I'm so frustrated bc I'm almost positive this is low potassium!! I found a couple more medical resource type sites last night saying low K causes low BP.

I found no convincing evidence that low potassium levels cause low blood pressure. The consensus seem to be the exact opposite: there is some kind of relationship with increased potassium intake causing lower blood pressure, as that leads to more sodium excretion.

Admittedly the evidence is a bit lacking, but this WHO systematic review regarding potassium supplementation in children reported the following:

Three meta-analyses of trials comparing increased potassium with lower or usual potassium
intake in adults found that increased potassium intake lowers blood pressure (8-10).
However, another meta-analysis that included only studies in adults with hypertension did
not detect a significant effect of potassium on blood pressure (11).

8 Cappuccio FP, MacGregor GA. Does potassium supplementation lower blood
pressure? A meta-analysis of published trials. Journal of Hypertension, 1991,
9(5):465–473 (http://www.ncbi.nlm.nih.gov/pubmed/1649867).
9 Geleijnse JM, Kok FJ, Grobbee DE. Blood pressure response to changes in sodium
and potassium intake: a metaregression analysis of randomised trials. Journal of
Human Hypertension, 2003, 17(7):471–480
(http://www.ncbi.nlm.nih.gov/pubmed/12821954).
10 Whelton PK, He J, Cutler JA et al. Effects of oral potassium on blood pressure. Meta-
analysis of randomized controlled clinical trials. JAMA: Journal of the American
Medical Association, 1997, 277(20):1624–1632
(http://www.ncbi.nlm.nih.gov/pubmed/9168293).

Taking a look at [8] for example, the conclusion clearly is that:

Overall, the results of the trials indicate that oral potassium supplements significantly lower systolic blood pressure [-5.9 mmHg, -6.6 to -5.2 mmHg (mean, 95% confidence interval)] and diastolic blood pressure (-3.4 mmHg, -4.0 to 2.8 mmHg).

This is a meta-analysis of many studies, so the evidence is stronger than if it was a single study. Then again, the effect is quite small as it's at most -6 mmHg for systolic and -3.4 for diastolic, but if you already have low BP it would of course be more noticeable.

 

[TinaT]

Of course, I've looked this up many times. And the fact that most sources say that K lowers BP is exactly my concern.

However, I have several other symptoms of low K including abnormal weakness / tiredness (like I'm going to pass out; not normal fatigue), strong muscle twitching, excessive thirst, and far worse bloating and nearly paralyzed bowels at certain times of day. Those all improve if I stop the supplements.

There are a few legit sources saying that low K can cause low BP. The Cleveland Clinic suggests that only *severe* low K would cause low BP -- which is why I think it's not listed in most places. It is not the norm.

And most people on this site are supplementing with K when taking B12 and folate. I am not. And I am having other severe K symptoms, which is extremely concerning.

"Muscular malfunction may result in paralysis of the bowel, low blood pressure, muscle twitches and mineral deficiencies (tetany)."

Source:

https://rarediseases.org/rare-diseases/hypokalemia/(You can read the awards they have won over 40 years helping those with rare diseases.)

"What are the symptoms of hypokalemia?​

Mild cases of low potassium may not cause any symptoms. But signs may include:

• Constipation.
• Heart palpitations.
• Extreme tiredness (fatigue).
• Muscle weakness and spasms.
• Tingling and numbness.

More severe cases of low potassium may cause signs and symptoms such as:

• Muscle twitches.
• Muscle cramps.
• Severe muscle weakness, leading to paralysis.
• Low blood pressure (hypotension).
• Lightheadedness or faintness.
• Abnormal heart rhythms (arrhythmias).
• Excessive urination (polyuria).
• Excessive thirst (polydipsia)."

Source:

https://my.clevelandclinic.org/health/diseases/17740-low-potassium-levels-in-your-blood-hypokalemia
Last night (and I've done this before), I started drinking K despite my low BP. Then my BP went up by 15 pts, then as I kept drinking, gradually back down again. It was still a little higher when I went to sleep than the normal lower I've been dealing with. But I only drank maybe 200 mg. Not enough to cause the bowel movement I probably needed (thankfully at least every morning I'm still having BMa, but they are incomplete; I'm slightly constipated in the morning and very constipated by evening).

@JES

I do wish there were more sources with this info. But it also makes sense to me that severe low K might cause a lower BP bc the muscles get paralyzed, as far as I understand.

 

[TinaT]

I just did an experiment and drank one Nooma hydration drink when I started feeling tired and my BP was down to 106. 340 mg potassium and 110 mg sodium. I still feel tired but my BP went up to 116. So at least I know that, at least this time, potassium did not continue to drop my BP.

 

[TinaT]

This study was interesting, about the effect of B12 and folate on ME patients:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4406448/

 

[TinaT]

@Freddd if you think potassium is stopping your bowels from moving, do you take enough to cause yourself to have a BM in the like next hour or something (I'm not even sure that would be possible)? Or do you just take enough to not feel the extreme tiredness -- basically to feel alert?

I'm still trying to figure out how much to take. Still struggling a lot with what seems like worse bloating.

I'm up to 6K mg of folate (injected 2 mg of B12 today, after taking yesterday off from injections to take more folate). I did discover today that the brand of methylfolate I've been taking, Seeking Health, has xylitol (and I took 6 today). So I guess the xylitol could be contributing to what is definitely worse than when I started bloating.

I've also been drinking alkaline electrolyte drinks (for potassium), and those have stevia, which could also contribute. These are both substances I normally wouldn't take.

(I haven't responded as well to potassium in water. And I can't tolerate low sodium V8. Really stuck...)

I finally received my l carnitine fumerate. Might that help the bloat?

But it just seems like the xylitol / stevia wouldn't make the bloating this bad. Feels almost double from when I started the shots, and harder / nearly impossible to suck in, when I try.

On a positive note, I'm recovering better from exercising. And numerous symptoms disappeared -- but the bloat and what is now mild reflux stubbornly remain.

Thanks very much for any suggestions or ideas!!

 

[Freddd]

Since 2007 I had copper insufficiency for 14 years until 6th-7th year of Lithium and suddenly I had 24 hour b12 serum half life after injection as compared with 20-50 minutes, same as research indicated before I took the lithium. I also got to midrange copper quite quickly since then. Also, the potassium has stopped going so low as to give paralyzed gut.

 

[Freddd]

@Freddd if you think potassium is stopping your bowels from moving, do you take enough to cause yourself to have a BM in the like next hour or something (I'm not even sure that would be possible)? Or do you just take enough to not feel the extreme tiredness -- basically to feel alert?

I'm still trying to figure out how much to take. Still struggling a lot with what seems like worse bloating.

I'm up to 6K mg of folate (injected 2 mg of B12 today, after taking yesterday off from injections to take more folate). I did discover today that the brand of methylfolate I've been taking, Seeking Health, has xylitol (and I took 6 today). So I guess the xylitol could be contributing to what is definitely worse than when I started bloating.

I've also been drinking alkaline electrolyte drinks (for potassium), and those have stevia, which could also contribute. These are both substances I normally wouldn't take.

(I haven't responded as well to potassium in water. And I can't tolerate low sodium V8. Really stuck...)

I finally received my l carnitine fumerate. Might that help the bloat?

But it just seems like the xylitol / stevia wouldn't make the bloating this bad. Feels almost double from when I started the shots, and harder / nearly impossible to suck in, when I try.

On a positive note, I'm recovering better from exercising. And numerous symptoms disappeared -- but the bloat and what is now mild reflux stubbornly remain.

Thanks very much for any suggestions or ideas!!

"Might that help the bloat?"- When I started carnitine it started enabling energy made very intentionally by carrying the fat to the mitochondria. I lost 45 pounds of water in a month when I started it. The other cause also for 45 pounds in a month was methylfolate getting rid of water.

 

[Freddd]

I'm the new kid on the block (totally). I have taken both on the same day without problems. Even though it's the most effective, it sounds like it might be better to try something else -- since you seem sure that is causing the bad effects. With other kinds of supplements, I've noticed huge variations in my reaction to what should be the same vitamin or nutrient. Also, I like the injections because, with those, I'm sure at least I have one solid dose of B12, then whatever is absorbed sublingually, in my mind, is a bonus.

The reactions to take methylfolate are a mix of some symptoms that are fixed by methylfolate but also some get can get worse4 because either more methylfolate needed or they are OTHER nutrients, most often potassium though for a while it was copper. The one other obvious one was BORON when I had "wild fire infective tooth decay as my dentist put it. The deficiency allows bacterial films that wouldn't normally make it, possibly i n multiple places with different bacteria,

 

[TinaT]

Might that help the bloat?"- When I started carnitine it started enabling energy made very intentionally by carrying the fat to the mitochondria. I lost 45 pounds of water in a month when I started it.

I have my fingers crossed. I started half a pill of LCF today, just to see how I do.

I tried half a lithium yesterday and the degree of zombie / can't stay awake was bad.

I am definitely more bloated since starting B12. I've added methylfolate to my current max tolerance (any higher and I tinnitus that I can't handle and, possibly, low blood pressure and insomnia. Still not sure what's causing the low BP, although it has improved a little since stopping high doses of Vit C.)

A few things I realized, which I hope will help (and one a current question mark):

1. I had been taking 4-6 MTHF lozenges from Seeking Health. Those contain xylitol.

2. I was drinking 3-4 alkaline electrolyte drinks (I really have problems with straight potassium in water.) Those all have stevia. I can't find a non acidic electrolyte drink, without stevia. I don't think one exists on the market. If anyone knows of any, please share.

I didn't take #1 or #2 today. Slight improvement in bloating but still bad.

3. Today I've been drinking low sodium V8. That is causing mouth burning. It's nothing like when I started B12 (the burning). But it's still probably going backward, which I probably can't continue very long. Very depressing and I don't have a solution. Just hoping maybe my throat will gain more and more tolerance with more shots. But that's taking forever and may never happen.

My throat is currently hurting more after my third glass today.

B12 deficiencies are absolute hell for those with reflux.

4. Around the time that I started the B12 injections, I started taking a whole food multi for women, by Dr Fuhrman. I'm wondering whether the food in the capsules might be causing part of the bloating problem. I mean who knows -- but I'm going to stop those for a while.

I'm in hard core depression mode today.

 

[TinaT]

@Freddd you never mention iron or ferritin. Maybe you had good levels of those?

I just realized I've also been taking iron supps (Ferrasorb), and I started those when I started the injections. My understanding is that iron is needed. My ferritin is only 18. So I'm reconsidering the iron infusion that I turned down last month. Doc said many of my symptoms could be caused by chronic low ferritin (which I have had). I'm concerned about the infusions worsening tinnitus or causing weight gain.

But I wonder if the low ferritin could actually be causing some of my digestive issues.

 

[HurrySaveMe]

Does anyone here have experience with feeling warm and more tired when taking the supplements? I just started taking the essential cofactors a few days ago (all the different vitamins with high dose vitamin C) and I've been feeling more warm on my skin, and much more tired and sleepy. I'm starting B12 and folate next week.

If I were to guess it's that the sensation of my skin being warmer is connected to my neuropathy, just wondering if this sort of reaction is a cause for concern.

 

[Helander]

@Freddd
Taking methyl-b12 seem to cause paradoxal folate deficency for me. It simply drains the folate. That forces me to take absurd high doses of folate that is not possible to be sustained. How do you get around that? Folate also drains the b12 if I take too low dose methyl-12. The balance seem to be impossible.