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Cannot tolerate oral B12 – causes shortness of breath and tachycardia. Why?

pela

Senior Member
Messages
103
I still have to order some new B12 and folate from Amazon. I was going to take 400mg of the folate (possibly cutting the tablets in half, even) until I know how I tolerate it.

Yes, it's 365mg for every 1/8 teaspoon.
I would order the 800 mcg folate. The 400 is not cost effective. 800 mcg is not a large dose. Prescription methylfolate comes in 7500 and 15000 mcg tablets. I get canker sores if I drop below 8000 mcg.
 
Messages
20
Location
France
I still have to order some new B12 and folate from Amazon. I was going to take 400mg of the folate (possibly cutting the tablets in half, even) until I know how I tolerate it.

Yes, it's 365mg for every 1/8 teaspoon.

If you have canker sores maybe you could try Doctor's Best, Best Fully Active B12 caps, they aren't sublingual tablets but you can use them as if they were like I'm doing.

I can't use anything with sorbitol, mannitol, fructose in it so it is a good alternative.

The only other ingredients are : Cellulose, modified cellulose (vegetarian capsule).
 

LynnJ

Senior Member
Messages
121
Alright. I've been trying to do a lot of research, but my head is spinning. There are so many different suggestions and so much reading that I'm feeling a little overwhelmed.

I'm about to place an order on Amazon for the following:

Enzymatic Therapy B12 Infusion 1mg
Country Life Methyl B12 Lozenges (5000mcg - bottle #6304)
Country Life Active B12 (dibencozide 3000mcg) with folic acid
Solgar folate 400mcg (as metafolin)

Does anyone see anything in this list that they disagree with? I thought I'd buy the Country Life AND Enzymatic Therapy B12 because the latter is so cheap (like $6), so why not try both? See if I like one better...

I'm still confused about how much adB12 to take with methyl B12. Because I have shortness of breath and tachycardia from both methyl b12 and hydroxy b12, I was wary of buying Anabol Dibencoplex, which is 10000mcg. I feel like I would explode with that much. I certainly couldn't take it with the methyl B12 at the same time.

Right now I generally take 5000mcg of methyl B12 daily. So how much adB12 am I supposed to take? I'll probably have to cut back on the methyl so my breathing problems don't get worse. I feel like the potassium is helping a little bit, but I need to switch to potassium citrate to see if that works without irritating my bladder. I have interstitial cystitis and I bought potassium chloride, which is apparently a big no-no. Oops...

The recommended dosage on the potassium bottle doesn't seem to be enough for me, though.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@LynnJ, don't use the Country Life w/ folic acid. Folic acid is not your friend. Instead, brand Freddd recommends and I use, is AnabolNaturals Dibencozide. You can cut or crush for lower doses. I've been using 7.5 mg AdB12 (old encapsulated formula Anabol Naturals) for many months, as my MB12 and Mfolate dosages have continued to rise. I self-test for dosages. Try just a crumb.

I used K+Gluconate powder for years, recently switched to K+ chloride, which is ok, but I'm returning to Gluconate (NOW brand, powder, from iherb). I recently read another comment re chloride causing problems. Gluconate as powder is, for me, the most versatile. I only switched to the chloride to try to reduce my consumption, as it's so strong, but that's not a compelling enough reason. Recommended dosages don't apply to us! I'm taking about 3 gm AM/PM, on a non-detox, non-stressful day. cheers, ahmo
 

LynnJ

Senior Member
Messages
121
Wait, I thought folic acid was good? ROFL!
Yeah, that dosage just has me very worried. That's a MASSIVE amount. 5000mcg of methyl B12 can leave me gasping like a marathon runner. Plus, it's extremely expensive. I was hoping there were other options out there.

Apparently potassium citrate helps alkalize the urine. I didn't even realize one of the ways they TEST for interstitial cystitis is by putting potassium chloride in one's bladder.

Like I said, oops. Guess I'll just have to dump it.
 

whodathunkit

Senior Member
Messages
1,160
@LynnJ: Since you need to titrate your dosage of mB12, skip the Country Life #6304 and just get the Enzymatic Therapy. They're both methylcobalamin so buying two of them at this point is like buying the same thing twice. It will be easier to titrate smaller doses with the ET 1000mcg tab (cut into halves, quarters, whatever). Then after you've healed for a while you can move on up to the CL6304 if you're comfy with that. That's what I did.

Folic acid is a synthetic form of folate. It has to be processed in the body before we can access the folate part of it, which is the only part of it that does us any good. But some of us are unable to process folic acid (due to genetic mutations, clogged liver, etc.) , so we don't get any folate from it at all. If you can't process it, it can also actually cause problems by blocking the action of good folate like metafolin. That's why many (most) of us skip folic acid and even natural folinic acid (which also has to be broken down) and go straight to folate.

Whatever B vitamins you add to your regimen, you always want to skip anything that has any folic acid in it at all. Just to be on the safe side.

For the AdB12 get Anabol Naturals instead. It's a big dose, but again, you can cut it into halves or quarters or crumbs or whatever you need. And if you happen to get the "old style" powder caps of Anabol Naturals that actually makes it easier to titrate the dose since you can simply tip a little powder out of the cap, put it between your cheek and gum, and then seal the cap back up until the next day.

As far as the expense of all these supps...yep. It's a little appalling at first. But I honestly consider these supps to be the best money I've EVER spent on my health. Big payoff for relatively little investment. Hope it works out the same for you. :)

HTH.
 

LynnJ

Senior Member
Messages
121
Got my MRI results back (I had an MRI of my neck done). Normal, of course. Goodbye, $500! Sigh… It was worth a look given how long-lasting and severe this pain is, though. Gotta make sure there aren’t any underlying disc problems or bone spurs, I suppose.

Pain has definitely been pretty unpleasant these past few days. I’m a little surprised the B12 isn’t having more of an effect yet. Feet still feel a little hot and tend to pulse, although they don’t burn as severely as they did a few weeks ago when I was basically hopping from foot to foot when I needed to stand for extended periods of time.

I just chewed half of a Jarrow pill, which is what I used to do (chew vs. allow it to dissolve slowly). Just sort of an experiment, since chewing the B12 clearly worked for me in the past. I want to see if there’s any difference in the effects of the B12 depending on how I take it.

Maybe part of the problem is I’m taking the B12 at around 10:00 PM. I used to take it at around 6:30-7:00 AM.

I haven’t been feeling great in general these past few days. Exhausted, feel feverish, bizarre anterior neck pain, shoulder pain, clavicle pain… Can barely shrug my right shoulder because holy heck does it hurt when I try. Even my back and forearms are feeling a little sore. Had the most bizarre headache yesterday too that was in a band between my ears. Like someone had my head in a clamp or something. That’s a new one for me.

Well, I’ll grab the Enzymatic Therapy B12, Solgar folate, and (alas) the Anabol Naturals AdB12 and pray that things start improving.

Is there a recommended B-complex to take with all of this? I currently have the Jarrow brand, but I don’t know if it’s considered to be any good. In fact, I was just looking at Freddd’s protocol and I see that there’s a red flag on it, as it contains folic acid. I'll stop taking it right now.
 

whodathunkit

Senior Member
Messages
1,160
@LynnJ: good news about your MRI! It's always good to rule stuff out, even if the problems are still around.

Read up on methyl trap, donut hole folate insufficiency, and paradoxical folate insufficiency. What you're describing sounds pretty classic for someone who either doesn't have enough mb12/folate to continue methylation "start-up", or who has inadvertently stopped methylation start-up by taking folic acid or niacin. I don't know all about it but I have read enough to recognize what you're describing is a fairly common pattern. I had some start-up troubles myself, although my symptoms were more to do with epithelial tissue than muscle tissue.

I do know that when I added a B-complex to my regimen, just the paltry 30mg of niacinimide in that thing brought everything to a screeching halt. Took me a few days to shake that off. I got angular cheilitis for the first time since I quit drinking heavily a couple decades ago. Really bad headache, achy muscles, etc. That B-complex is one of the good ones, too, with no folic or folinic acid, only active forms of the B vitamins, and everything in balance. Had to be the niacin because it hasn't happened before or since. So I won't take a B complex again. I take my B's piecemeal now, again only the active forms. No niacin at all.

That's not to say B-complexes or niacin is bad for you. Lots of people take B complex, and everybody needs some B3 (the niacins). But I get a lot of B vitamins from milk and other stuff in my diet so probably don't need an entire B complex, only just a few of the B's. Point being that whatever throws you out of balance is what you shouldn't take. That's going to vary for everyone.

You might consider stopping all B complex for a little while (not just Jarrow, but any brand) just to see what happens.

Don't chew any of your B12 tablets, regardless of what form it is (adb12 or mb12). Hold them between your cheek and gums for at least an hour. You may have gotten a reaction from chewing in the past because you were severely deficient before. Now that you're not as deficient you must get more of it into your bloodstream to move you up the road, so to speak.

Also, try to read as many of Freddd's posts as you can. His condition is atypical in that he had a lot of genetic mutations messing him up, but he also had a lot of really severe problems and a lot of the symptoms you're describing. So maybe reading about his experiences will be helpful to you. He's helped a lot of other people.
 

LynnJ

Senior Member
Messages
121
I almost wish it had been something like a bone spur, though, where I could just have surgery, do some physical therapy, and be done with it! My health problems are never easy. Difficult to diagnose, difficult to treat.

I will definitely halt taking the B-complex (and I'll be taking Solgar folate within a week here). I did a little bit of reading on methyl trapping, etc., but I'm still uncertain about some things. A lot of the reading I've done is fairly complex, and it leaves me feeling a little confused. I just...avoid folic acid and continue taking methylB12 and take the Solgar Metafolin? I thought I'd start out with the 400 mcg, but maybe I'll do 800 instead and cut them in half if need be.

Hilarious to think I used to believe you could just pop a vitamin pill and that'd be it.

Do you mind if I ask what B vitamins you take separately (other than B12 obviously)? I would be curious to know how much B12 you (or others) generally take. My minimum is 5000mcg, and it seems like that's fairly common. Depending on whether I can tolerate potassium citrate and how much it helps with my SOB and tachycardia, I could up that dose.

I will say that even though I may not be as deficient as before, my symptoms (neck/shoulder/clavicle pain and feet neuropathy) haven't improved very much.

I'll be curious to see how well the Enzymatic B12 pills dissolve. This Jarrow stuff is ridiculous. Put one in at 10:00-10:30 and it's still there somewhat at 6:00 in the morning. It's irritating my mouth a little. I know dissolving under the tongue apparently isn't as good because it dissolves faster, but...
 
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whodathunkit

Senior Member
Messages
1,160
If it makes you feel any better, nobody's health problems are usually easy to diagnose or treat. I have a fabulous doctor who practice natural therapies, who is willing to prescribe supplements and do things other MD's won't, and who has confirmed through tests a lot of things I already suspected, but frankly, most of the real healing I've ever done has been due to my own experimentation and research. Patience and proactivity are keys to managing your health yourself, especially if you can't find a good doctor to be your partner in your journey. I'm lucky to have one, but I know not everyone is.

Irritation of the epithelial tissue of the mouth can be a start-up reaction from mB12. I had it a little bit, and I've read others have had it, as well.

The burning in your feet is another symptom start-up symptom I've read about. I don't have any neuropathy symptoms but a lot of other people do. Freddd had a terrible time with them. For most, mB12 seems to start waking things up, with a gradual lessening of symptoms over time.

I take injectable mB12 (2 -5 mg in the a.m.) plus 10,000-20,000mcg sublingual spread throughout the rest of the day. I usually put a 5000mcg tab in right before I go to bed, to go along with my last bit of folate for the day. Folate needs mB12 to work so I always take a bit of mB12 when I take folate (divided doses 3x/day).

FYI, there is always some "gunk" in my gums from the Country Life mB12 when I wake in the a.m. I suspect the gunk is just a fact of life if you're going down this road. ;)

I've had ups & downs with the mB12 dose (I went through a period where it made me a little spacey, another period where it made me sleepy in the middle of the day, etc.), but things have stabilized now. I'm actually taking such big doses because I want to see if it has a beneficial effect on my hearing loss.

I take between 2500 - 5000mcg of adb12 (Anabol Naturals). Depends on how much comes out of the capsule when I open it in the a.m. LOL The adb12 gave me a lot of energy right off the bat so you may want to start pretty low with that until you see how you react. I loved it, but it can help create jitters/nervousness/insomnia if you take too much. I took too much initially and had to back down for a while. Now I'm stable and it feels good. I always take it first thing in the a.m. because I still think it could affect my sleep. If I forget to take it in the a.m. (not often but it happens occasionally) I'll skip it for that day. Adb12 gets stored in the mitochondria so once you've made up a deficiency skipping a day here and there won't matter. MB12 is different, because it clears the body fairly rapidly. This is why you have to keep dosing throughout the day to keep blood levels relatively high.

I also take active form of B6 (P-5-P), active form of B2 (riboflavin 5-phosphate), active form of thiamine/B1 (Benfotiamin), and every few days the active form of pantothenic acid/B5 (panthenine). The doses of these individual vitamins are appropriate for keeping things in balance, so I take them daily, except for the panthenine. It's a huge dose so I don't take it every day. I could split each capsule into more capsules but I'm lazy. LOL I do try to stay alert to changes so if something goes out of balance I won't let it get to far.

It all takes time, so don't expect miracles overnight. And if you do experience a few days of a miracle (you wake up going "I FEEL GRRRRRRREAAAAT!!!" or similar), don't be upset or surprised if you have a setback. It's happened to a lot of people. It happened to me. When I first started Freddd's "Deadlock Quartet" I had a great couple of weeks and then boom! Sick, sick, sick. I had to take a whole week off work. So I researched some more, adjusted my doses, added some things, subtracted some things, lived with the side effects, adjusted some more. It's a whole process. Still processing, in fact. But I'm much better off than I was before I started all this. I hope it can be the same with you. :)
 

LynnJ

Senior Member
Messages
121
The burning in my feet actually started long before I began taking B12. So I think it's more of a deficiency symptom than a start-up one. I don't have any sort of proof that it's due to a B12 deficiency, but they couldn't figure anything else out, and the B12 makes it go away - or used to, at least.

The clavicle/shoulder/neck issues started about 2 months after that.

20,000mcg?! WOW, that's a lot of B12. Not sure my body can handle that much. I'm going to try the potassium, but I need to be careful with how much I take as I'm taking a potassium-sparing diuretic.

I see someone in another thread recommended 10,000mcg of methyl B12 and 10,000mcg of metafolin. I'll have to see if I can get my doses up that high.

I'm just feeling overwhelmed by the sheer amount of vitamins it seems like one should take. I'll start with the B12, metafolin, and potassium and see what happens.
 
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pela

Senior Member
Messages
103
The burning in my feet actually started long before I began taking B12. So I think it's more of a deficiency symptom than a start-up one. I don't have any sort of proof that it's due to a B12 deficiency, but they couldn't figure anything else out, and the B12 makes it go away - or used to, at least.

The clavicle/shoulder/neck issues started about 2 months after that.

20,000mcg?! WOW, that's a lot of B12. Not sure my body can handle that much. I'm going to try the potassium, but I need to be careful with how much I take as I'm taking a potassium-sparing diuretic.

I see someone in another thread recommended 10,000mcg of methyl B12 and 10,000mcg of metafolin. I'll have to see if I can get my doses up that high.

I'm just feeling overwhelmed by the sheer amount of vitamins it seems like one should take. I'll start with the B12, metafolin, and potassium and see what happens.

Lynn, there are many people taking "high" doses of methyl B12 and adB12 without any problems. I have a friend who injects 30 mg per day of methyl B12 which she gets with a doctor's prescription. I inject 1 mg per day plus I use 30-35 mg sublingually per day and I have never had an adverse reactions to it, or to ad B12 or folate.

You asked earlier about Source Naturals Dibencozide. This brand is fine. It is a little cheaper than Anabol Naturals.

Are you developing frozen shoulder?
 

knackers323

Senior Member
Messages
1,625
Got my MRI results back (I had an MRI of my neck done). Normal, of course. Goodbye, $500! Sigh… It was worth a look given how long-lasting and severe this pain is, though. Gotta make sure there aren’t any underlying disc problems or bone spurs, I suppose.

Pain has definitely been pretty unpleasant these past few days. I’m a little surprised the B12 isn’t having more of an effect yet. Feet still feel a little hot and tend to pulse, although they don’t burn as severely as they did a few weeks ago when I was basically hopping from foot to foot when I needed to stand for extended periods of time.

I just chewed half of a Jarrow pill, which is what I used to do (chew vs. allow it to dissolve slowly). Just sort of an experiment, since chewing the B12 clearly worked for me in the past. I want to see if there’s any difference in the effects of the B12 depending on how I take it.

Maybe part of the problem is I’m taking the B12 at around 10:00 PM. I used to take it at around 6:30-7:00 AM.

I haven’t been feeling great in general these past few days. Exhausted, feel feverish, bizarre anterior neck pain, shoulder pain, clavicle pain… Can barely shrug my right shoulder because holy heck does it hurt when I try. Even my back and forearms are feeling a little sore. Had the most bizarre headache yesterday too that was in a band between my ears. Like someone had my head in a clamp or something. That’s a new one for me.

Well, I’ll grab the Enzymatic Therapy B12, Solgar folate, and (alas) the Anabol Naturals AdB12 and pray that things start improving.

Is there a recommended B-complex to take with all of this? I currently have the Jarrow brand, but I don’t know if it’s considered to be any good. In fact, I was just looking at Freddd’s protocol and I see that there’s a red flag on it, as it contains folic acid. I'll stop taking it right now.

Is that the B-right from jarrow that is no good?
 

LynnJ

Senior Member
Messages
121
Yes, it's the B-right. But I'm not going to take it anymore because of the folic acid.

I definitely realize there are people taking tons of B12 with no issues, but I'm not sure I can personally do that. Everyone reacts differently. I'll just have to see how it goes.

As for frozen shoulder, no. I don't think so. I honestly just woke up one morning with severe pain that's worse when I shrug. There may have been some minor pain in the days/week leading up to that, but it mostly just started out of the blue. None of the many doctors I've seen have suspected frozen shoulder.
 

whodathunkit

Senior Member
Messages
1,160
@LynnJ: research neck pain and muscle pain on this forum. It seems to be a fairly common symptom induced by methylation start-up. It can indicate a need for more folate or more potassium (or both). I believe @ahmo had some issues with neck & muscle pain so maybe he'll chime in.

For the record, I don't think anyone here would ever recommend starting off with big doses of B12 (like I take or even as much as 5000mcg) for anyone, especially someone with your existing symptoms. You should do what you feel comfortable with. Sometimes you may have to endure some discomfort in order to "push through" to a better level of healing and wellness, but it should never be more than you can bear and always listen to your body. There's usually a difference between healing discomfort and the discomfort that indicates you're truly on the wrong track and making things worse. It's a subtle but definite difference. If you're in doubt, then err on the side of caution. However, sometimes you can't get better if you're too cautious. It can be a difficult balance to strike, for sure. A good rule of thumb is that gigantic doses of anything when just beginning is never a good idea. Most people seem to be able to work up to therapeutic doses by "starting low and going slow".

I really recommend reading two threads in their entirety:

"Active B12 protocol basics": http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

"B12: The hidden story": http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/

They're really loooooooong (especially the hidden story one), but chock-full of good information. Reading and re-reading them really helped me sort out some stuff. Might help you too.
 

LynnJ

Senior Member
Messages
121
I'll try to read those this weekend, thank you. I think I read a little over half of the Active B12 protocol basics one.

I'm ordering my supplements today, so I'll be taking the new stuff pretty soon (hurray for free 2-day shipping with Amazon). I'm going with the Anabol Naturals AdB12, as I do see it has a lot of positive reviews here.

The pain has been so bad this week. I'm almost tempted to make an appointment to see a pain management doctor, just to see what they say. I was prescribed Naproxen a long while back, and I still have some on hand, but it doesn't seem to do much. Nor does Zyflamend. It's hard to just get through the day. It's such bizarre, pain, too. A unique mix of stabbing, sharp, aching, pinching... Feels like I constantly need to stretch but the relief is extremely temporary when I do.

The joys of the human body.
 

LynnJ

Senior Member
Messages
121
I do have to say, things are weird today. I've been paying close attention, and the neuropathy symptoms in my feet are 80% gone I'd say, which I expected given my past experience taking B12. However, the pain along my right clavicle/shoulder is as bad as ever, which is unusual. Generally it starts going away when the feet issues do. In fact, there's mild aching in my upper back, arms, and fingers today, and that's something new. This could be because I'm getting sick (feel hot/cold, extremely tired, slight aching in throat/lungs), but I can't tell yet.

Yesterday and today I've been letting a full 5000mcg tablet (still Jarrow) dissolve in my mouth overnight, but I've also taken another 5000mcg tablet during the daytime. I bite it in half and let it dissolve; usually take one half around 10:30-11:00 and the other around 3:00.

Now, previously one 5000mcg pill (chewed) left me gasping for breath, trembling, with a racing heart. Total misery. I'm now technically taking 10,000mcg over the course of 1-1.5 days, but I have only mild shortness of breath. No clue why. I was only able to take the potassium powder for a few days before I realized it was irritating my interstitial cystitis. I've been drinking some orange juice and trying to eat more bananas, but... I don't think my potassium intake has gone up THAT much.

This is odd. At this point I'd take the shortness of breath for some pain relief.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
The Jarrow B12 is no longer effective, so you may really be getting very little or no B12.
 

LynnJ

Senior Member
Messages
121
Does anyone know WHEN, approximately, the Jarrow formula was changed and it became less effective?

Thankfully my Enzymatic Therapy B12 will be delivered today, as will my Anabol Naturals AdB12. My Solgar Folate and Potassium Citrate arrived on Saturday.

I'm still a little iffy on proper dosing. Assuming I want to take 4000-5000mcg of methyl B12, how much AdB12 do I take? Does it matter when it's taken in relation to the methylB12? How much folate per day? And for the folate, should that be taken on an empty stomach like the B12 is...?

Just out of curiosity, has anyone here ever tried alternative forms of B12 like B12 patches and B12 gum?