• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Transdermal B12 oils

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Greg doesn't understand why I don't tolerate AdoB12, which helps enormously with inflammation and stamina, but gives me horrible folate deficiency symptoms. There may be more to it that I don't understand fully. I'm still trying to get to that place. Still, he's remarkably helpful as long as you can begin to decipher where you don't fit into his view of things.
 

Athene*

Senior Member
Messages
386
Hi again @Kathevans I'm considering trying the b12 oils and am trying the b2 like you and Johnmac. The Freddd protocol felt absolutely fantastic for a couple of months but it tanked my iron, because of the requirement for low b2. Apparently b2 is necessary to keep iron in the cells, so looks like I've no choice now but to reconsider.
I had similar problems to you with Adob12 for a long while. The only way I tolerated it in the end was to take tiny amounts and build up very slowly. I guess you've tried that?
The only other thing I can think of is that Fredd takes his Adocbl separately to his methylb12, because it can work against it (I'll see if I can find exactly what he said). He takes his Adocbl as a 50mg dose over four hours once per week, in the morning, and then continues with the methylb12 for the rest of the day. I did that for a while too, but then I went to daily Adob12.
 
Last edited:

Athene*

Senior Member
Messages
386
Last edited:

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
I had similar problems to you with Adob12 for a long while. The only way I tolerated it in the end was to take tiny amounts and build up very slowly. I guess you've tried that?

It seems to me from my symptoms that I need to have more available Folate in order to tolerate higher AdoB12. As it goes into me, I feel great, and often throughout the day, then things slip and all the folate symptoms become very disagreeable--from drippy nose to IBS, to a tightening of my muscles--trapezius and ultimately face and a frontal headache usually in the middle of the night.

My current theory as regards my own body only, is that if I increase what was tested as a B2 deficiency, I'll begin to make more folate available and so on and so forth. My husband always says, "In theory, theory and practice are the same; in practice they're not!"

So we'll see!

In the meantime I do have both folate deficiency symptoms and I've stopped the B12 as well. I just want to try to observe what happens. I don't feel great physically, very weak/sore back and so on, but I'm sleeping more. And I feel happy. I'm now up to about 65mg of B2/day, spread out between about 8 or 9 a.m. and 5, always less than 25mg.

We'll see.

If, as he suggests at the end, the problem is in the gut, then maybe the Adob12 OIL would work better? Have you tried the Ado oil? (I'm considering getting the Methyl/Ado oil and trying the b2 too)

I'm not going to try the oils till I can tolerate the tablet--at least to some extent. Interestingly, even MeB12 gives me unpleasant symptoms if I'm not taking the Folate with it. I spent a couple of hours yesterday looking back over my Excell Chart and I could see this clearly. It may be that I'm just not getting enough of the B12 into my cells given the TCN gene--but then, other people tend not to have much of a problem with this and I'm a little suspicious of some of Yasko's pronouncements.
 

Athene*

Senior Member
Messages
386
It seems to me from my symptoms that I need to have more available Folate in order to tolerate higher AdoB12. As it goes into me, I feel great, and often throughout the day, then things slip and all the folate symptoms become very disagreeable--from drippy nose to IBS, to a tightening of my muscles--trapezius and ultimately face and a frontal headache usually in the middle of the night.

My current theory as regards my own body only, is that if I increase what was tested as a B2 deficiency, I'll begin to make more folate available and so on and so forth. My husband always says, "In theory, theory and practice are the same; in practice they're not!"

So we'll see!

In the meantime I do have both folate deficiency symptoms and I've stopped the B12 as well. I just want to try to observe what happens. I don't feel great physically, very weak/sore back and so on, but I'm sleeping more. And I feel happy. I'm now up to about 65mg of B2/day, spread out between about 8 or 9 a.m. and 5, always less than 25mg.

We'll see.



I'm not going to try the oils till I can tolerate the tablet--at least to some extent. Interestingly, even MeB12 gives me unpleasant symptoms if I'm not taking the Folate with it. I spent a couple of hours yesterday looking back over my Excell Chart and I could see this clearly. It may be that I'm just not getting enough of the B12 into my cells given the TCN gene--but then, other people tend not to have much of a problem with this and I'm a little suspicious of some of Yasko's pronouncements.
You're probably right. The Ado oils will probably have the same effect, with same problems, I guess. Sorry you're not feeling great, physically, yet, but hopefully you will soon.
I feel crap this week because I'm trying to go the b2 route now and lower the methylfolate. If I take high dose folate and high dose b2 together I run into the problems Fredd predicted. I've lowered the folate, but have only got to 22.5mg of b2 so far. Thanks for tip re spreading it out over the day. Can I ask how long it took you to get up to 65mg B2/day?
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Can I ask how long it took you to get up to 65mg B2/day?

Certainly. I began to take more than was in my very low dose B-Minus B complex--since I only take a half a pill a day divided in two, that was only 10mg. I wanted to stay low so I could begin to see what was what. At this time near the end of January, I went from a high of 2,000mcg of folate and slowly backed down, so it's been about 8 weeks. It has not been particularly comfortable. But the more folate I took, the stronger my folate deficiency symptoms were. It didn't seem to be moving me forward.

Now that I better understand B2, I think my body simply hasn't been able to utilize it as well as it might. To be honest, I'm just not sure. Either the B2 will help some of the very same symptoms, or ultimately I will again ramp up on the folate and B-12. I just re-read Gary's opening to this thread which is very convincing as to the MTR/MTRR snps and the need for higher B12 in order to facilitate those TCN genes that are functioning to have the necessary B12 in your serum to transport. I've got those snps, too.

Anyway, the first week I moved the amount up to about 25mg/week and then each week I've increased by 5-10mg, at the same time that I've been lowering the folate. I got off folate about a month ago, then added it back in again for a little over a week before going off it again. I think you know just how hard it is to assess anything over the short term, though, so I hesitate to make any profound statements! The evidence just isn't there.

I felt pretty good on 5-6,000mcg B12 and 1,200-1,600mcg of folate. But I wasn't sleeping well (not that many people are at these doses, I suspect), but I knew something was missing.

I'm just running another experiment. But check out the end of the 'B2 I Love You' thread: http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/page-52#post-714873

There are some interesting posts there, particularly one I need to take a deeper look at by pogomon.
 

Athene*

Senior Member
Messages
386
I just re-read Gary's opening to this thread which is very convincing as to the MTR/MTRR snps and the need for higher B12 in order to facilitate those TCN genes that are functioning to have the necessary B12 in your serum to transport. I've got those snps, too.

I worry about the same thing. What do you think of what Johnmac says (below thread link) . If you don't want to go clicking around links, he's basically referring to Greg of B12oils who's saying that the transdermal lower dose is more effective than high-dose injectable (or high-dose sublingual, obviously), because 1. you absorb 80% (close to injecting, a lot more than sublingual) and 2. it's the gradual loading of transcobalamin via the transdermal method that's going to keep the b12 getting to where it's needed, including the brain i.e. drip-feeding 24 hours per day, with no periods of time where there's no b12 in the serum (unlike with injections which get used up fast)...Is that a better scenario with those snps? Sorry, but I am so brain dead today it's scary, but at least my memory is normal again (I thought I was really losing it when iron went very low). Would love to know what you think. I'm worrying now that I'm off the high-dose folate and 3mg b12 injections with several sublinguals daily (now on 1mg injections daily - just in case- along with 2 sprays of oil)...

http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/page-15#post-713085
(top of page 15)

Thanks for all the info you gave, by the way. It's a great help.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
@Athene* I'm sorry you are having a tough day. Mine felt like a slog, but not terrible.
Is that a better scenario with those snps?
It seems to me if you do have those snps, that a constant trickle of B12 coursing into your serum from the transdermal would be good, in order, as Greg says, to keep what transporters you do have (I'm homozygous, so that probably means I'm functioning on about 30% of what those without are) busy getting the B12 into your cells.

Please know I'm not advocating that you stop B12 in order to try the B2 protocol. I was actually having bad symptoms of muscle tightening in my neck and face that I couldn't get rid of with either B12 or folate and even the B2 seemed at times to cause this. I had to stop to be able to 'read' my symptoms. Even now I'm just watching. And trying to keep cool about it. I do seem to have other symptoms that I used to think were B12 deficiency--the jerking of my torso in the night. But it's not terrible. I'll see if it gets worse.

My iron doesn't seem to be too low--and of course, the B2 is supposed to help release the iron stored in your liver (I forget what form of iron), but this is the reason you ramp up slowly. Otherwise, it can be very irritating and activating and cause detox symptoms...

Take care.

Again, I'm also posting on the 'B2 I Love You' thread I linked to above--as to a new gluten-free diet I've gone on and so on. So a lot is going on with me...
 

garyfritz

Senior Member
Messages
599
... Greg of B12oils who's saying that the transdermal lower dose is more effective than high-dose injectable (or high-dose sublingual, obviously), because 1. you absorb 80% (close to injecting, a lot more than sublingual) and 2. it's the gradual loading of transcobalamin via the transdermal method that's going to keep the b12 getting to where it's needed, including the brain i.e. drip-feeding 24 hours per day, with no periods of time where there's no b12 in the serum (unlike with injections which get used up fast)...
I think that's the major benefit of the oils. They're easier to administer than injections, AND they deliver significant doses in a steady, sustained manner. Even though my body seems to vacuum up every available scrap of B12, the oil does a great job of keeping my B12 levels high 24x7.

The B12 oil works at least 10x better for me than the CL 5mg sublinguals. I was taking 30-40mg/day of CL sublinguals and still suffering lots of symptoms. I take 7-8 mg/day of meB12 and adoB12 in oil form, and I have almost no symptoms.

I'm fortunate that "enough" B12 keeps my symptoms in check. Others might not be that lucky. But if you need B12, I think the oil is an incredibly good way to deliver it.
 
Last edited:

Athene*

Senior Member
Messages
386
This is great news, @garyfritz - very heartening. Thanks for commenting. It was a post of yours detailing the b12oils that helped me decide to go for them, so thank you for your generosity in sharing that. So, you must be taking 4 or 5 sprays of b12oil (.75 each?). It looks like I'll need about the same. I have to say I feel a lot better today - just started my second bottle of oil and it seems to be kicking in. I seem to be getting by on less mfolate now too (fingers crossed, 'cos I was running out of money to keep buying huge doses). So the b2 seems to helping now too (second week on b2). I was considering dropping the injections completely for the oils, but it's such a psychological leap to trust oil over needles! That's just me - I'm sure I'll get over it!

@Kathevans Thanks for commenting on that. I never had snps checked, but going by symptoms and huge need for b12 and folate, I'm sure I have lots of weird stuff going on. I'm doing an OAT soon and Greg has kindly offered to check it out. I also have PA (pernicious anemia). And no worries - I get what you're saying about the b12 etc., and at least by dropping it briefly you might be able to identify symptoms clearly in future, as you've noticed. They can be difficult to identify, but it helps so much if you can, I find, though I don't always match cause and effect exactly - most of the time I think I know what's causing what.

I forgot to mention that Greg mentioned Biotin and it seems to be helping. Just twice the RDA, Apparently it's needed to convert Adocbl. I take a tiny smidge of thiamin too (dairy-free & grain-free diet can be low on the b vits & other things - I see you're on g-free too). I still take the low-dose b complex Fredd advised. I think you said you took that too. Seems like a good plan and then add the higher doses of b12, b2. Let's hope it works. I do hope your neck and face issue resolves itself. I get aching jaw and gum on left side when potassium is low. I still need tons of potassium, but I know you like to keep it relatively low. We're all so different.

A great thing about the b2 I've noticed is that my temperature has come up from 96 degrees in the morning to 97.4 and rising to 98 in the afternoon, without changing my thyroid dose. To me that means it's helping my thyroid and adrenals because it's raising my iron. Already my gums are pinker (they had gone white on the Fredd Protocol with the low b2) and I have other signs of better iron (also memory is sharper, thankfully). Last week I had horrific detox symptoms on the b2 so I'm praying that's over. We'll just have to see, as you wisely say. I have gone past getting too excited, but am quietly hopeful...
 
Last edited:

garyfritz

Senior Member
Messages
599
So, you must be taking 4 or 5 sprays of b12oil (.75 each?).
No, I take 1x/day in the morning, and 2x/day at bedtime -- total of about 1.9mg meB12 and 5.6mg adoB12. (The "3-4mg" I said earlier was wrong. I edited my previous post.) That's usually enough to keep everything under control. In the last few months I've started waking at 3-4am with agitation and muscle tension, but usually I can just pop 1/4 of a 5mg CL behind my lip and it's back to dreamland.
 

Athene*

Senior Member
Messages
386
No, I take 1x/day in the morning, and 2x/day at bedtime -- total of about 1.9mg meB12 and 5.6mg adoB12. (The "3-4mg" I said earlier was wrong. I edited my previous post.) That's usually enough to keep everything under control. In the last few months I've started waking at 3-4am with agitation and muscle tension, but usually I can just pop 1/4 of a 5mg CL behind my lip and it's back to dreamland.
Interesting. You have it down to a fine art! I haven't quite hit the sweet spot yet. I was wondering the other day if taking two sprays together would give a stronger dose, or whether one dose would be wasted if two were sprayed on together. So you find the two together lasts longer, rather than being stronger?
 

garyfritz

Senior Member
Messages
599
Yes. I tried doing just one squirt at bedtime, and within a few hours I was awake and going nuts. My body seems to inhale large quantities of B12, especially at night. (It's apparently a critical component in the melatonin-regulation process.) Without it, I won't sleep.

I've got it to a "fine art" :) because I respond so quickly to B12. It's very clear when I'm running low, and I (usually) get quick relief when I take more. That made it a lot easier to fine-tune it, once I realized B12 was the key AND I got a good/steady supply of B12 (the oil).

I use a lot more oil than Greg says is "normal," but through trial and error I determined this is a minimum amount for me. At night I burn through a single dose in just a few hours.
 

Athene*

Senior Member
Messages
386
Yes. I tried doing just one squirt at bedtime, and within a few hours I was awake and going nuts. My body seems to inhale large quantities of B12, especially at night. (It's apparently a critical component in the melatonin-regulation process.) Without it, I won't sleep.

I've got it to a "fine art" :) because I respond so quickly to B12. It's very clear when I'm running low, and I (usually) get quick relief when I take more. That made it a lot easier to fine-tune it, once I realized B12 was the key AND I got a good/steady supply of B12 (the oil).

I use a lot more oil than Greg says is "normal," but through trial and error I determined this is a minimum amount for me. At night I burn through a single dose in just a few hours.
Cheers, @garyfritz . I must work on recognising my low b12 symptoms. I can easily recognise low folate and low potassium, but not too sure about the low b12. Having said that, I've had dreadful sleep problems for years, and that's improving since began high-dose b12, so maybe I need b12 for the melatonin production and I might sleep even more. Must try that extra bit at night. Thanks for tip :)
 

garyfritz

Senior Member
Messages
599
We are all different, @Athene*, but my first b12 deficiency sign is Restless Legs Syndrome. (Which I've had on & off since I was a child -- makes me wonder how long I've been deficient!) After that there's a whole litany -- see http://forums.phoenixrising.me/index.php?threads/voracious-need-for-b12.36828/#post-584860 for an example. For me b12 doesn't put me to sleep, like a sleeping pill; it soothes problems that *prevent* me going to sleep. For some reason I wake with agitation, tense/twitching muscles, etc, and the b12 puts me back to normal so I can fall asleep again.

Re b12 and sleep:
This article says it can take several weeks of b12 for the full benefit to accrue. It also suggests that light exposure (avoiding bright/blue lights for a few hours before bedtime, and getting exposure to bright light in the morning) is an important part of the treatment. In addition to b12 regulating melatonin, the light exposure is also an important part of the mechanism.

http://fanaticcook.com/2015/08/12/having-trouble-sleeping-vitamin-b12-may-help/
 

Sparrowhawk

Senior Member
Messages
514
Location
West Coast USA
Cheers, @garyfritz . I must work on recognising my low b12 symptoms. I can easily recognise low folate and low potassium, but not too sure about the low b12. Having said that, I've had dreadful sleep problems for years, and that's improving since began high-dose b12, so maybe I need b12 for the melatonin production and I might sleep even more. Must try that extra bit at night. Thanks for tip :)
If you don't mind my asking, how do you recognize the low folate and low potassium as separate issues when they crop up? Thanks!
 

Athene*

Senior Member
Messages
386
Hi @Sparrowhawk Low folate for me is strongly epithelial - I have a tiny 'paper-cut' on my skin for the past three years that appears (quite sore, just like a paper-cut) when folate goes low, then since the Freddd protocol, almost magically disappears within hours, or less, when I ingest enough folate. When I first began to notice it three years ago I hadn't a clue what it was, but now it's a useful signal for me - though I haven't had it now for several weeks, which is a good sign. I also get peeling lips. The other epithelial issue is the irritation of the gut lining - low folate causes a lot of peristalsis, then running to the loo, 4 or 5 times a day. All reverts to completely normal within hours (or less) and stays normal when enough folate. Then there's the hair follicle irritation - brief bouts of crazy itchy scalp, followed hours later by lots of hair-shedding. I am very happy this has stopped with enough folate!
Potassium: muscle aches with total weakness (can barely walk around & sometimes can't raise my arms or sit up in bed, or wash my hair - this was before I realised what it was), pulsatile tinnitus (whoosh noise that matches my pulse) which means my blood pressure is going high. Tingling feet, if left without taking potassium, progresses to general tingling, even around mouth and face, also aching jaw and gum on left side, then breathlessness, banging heart - this gets scary, but now I know more what I'm doing it doesn't happen. Agitation and irritability comes with low potassium too. Oh, by the way, I made the mistake of taking relatively high-dose b2 (35mg) along with high folate recently and that very quickly brought on the attack I just described - breathless, numb face, banging heart, before I realised it was the b2 along with high folate using up potassium. Horrible.
When my hypothyroidism was bad the low potassium was worse - hypothyroidism causes low potassium too so it's always been a struggle. The b2, so far, is helping my thyroid & adrenals a lot (it's raising my low iron that had got seriously low on the Freddd protocol, because of keeping the b2 low). I get by on much less folate (and a bit less potassium) now - am just hoping this continues.
I learned to identify signs by reading endlessly here, and from years of myriad symptoms that gradually vanished with the introduction of the Freddd protocol
 

Athene*

Senior Member
Messages
386
We are all different, @Athene*, but my first b12 deficiency sign is Restless Legs Syndrome. (Which I've had on & off since I was a child -- makes me wonder how long I've been deficient!) After that there's a whole litany -- see http://forums.phoenixrising.me/index.php?threads/voracious-need-for-b12.36828/#post-584860 for an example. For me b12 doesn't put me to sleep, like a sleeping pill; it soothes problems that *prevent* me going to sleep. For some reason I wake with agitation, tense/twitching muscles, etc, and the b12 puts me back to normal so I can fall asleep again.

Re b12 and sleep:
This article says it can take several weeks of b12 for the full benefit to accrue. It also suggests that light exposure (avoiding bright/blue lights for a few hours before bedtime, and getting exposure to bright light in the morning) is an important part of the treatment. In addition to b12 regulating melatonin, the light exposure is also an important part of the mechanism.

http://fanaticcook.com/2015/08/12/having-trouble-sleeping-vitamin-b12-may-help/
Cheers @garyfritz! I have a terrible habit of reading websites (like this one!) on my phone in bed when I should be winding down for sleep. Interesting about the bright light - I read about it before and overlooked it, but I really should take it seriously. I will have a look at that link. A full night's sleep would be such bliss!
 

Athene*

Senior Member
Messages
386
Cheers @garyfritz! I have a terrible habit of reading websites (like this one!) on my phone in bed when I should be winding down for sleep. Interesting about the bright light - I read about it before and overlooked it, but I really should take it seriously. I will have a look at that link. A full night's sleep would be such bliss!
P.S. @garyfritz Greg mentioned to me that low iron is a classic cause of restless legs. Is that one of your issues or maybe it's definitely b12 with you...
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
A great thing about the b2 I've noticed is that my temperature has come up from 96 degrees in the morning to 97.4 and rising to 98 in the afternoon, without changing my thyroid dose.

I haven't taken my temperature at all, so that might be an interesting test. I have noticed more sweats since I've begun the B2. Also, very interesting about Biotin and AdoB12. Since I've stopped eggs and am supplementing extra, perhaps some of my difficulties with AdoB12 will dissipate.

I still see a lot of detox symptoms form the B2 such as coughing and sputtering with mucus, particularly at night. And I was awake every hour last night until early morning when I managed a couple of longer periods of sleep.

I have to admit that my daily folate deficiency symptoms are still there (and it's possible the facial muscle tightening is one of them...), and I almost popped a little this afternoon with some B12. Maybe my B2 levels are improved enough. I spent an enormous amount of time trying to figure out the genes related to mitochondrial dysfunction on the 'B2 I Love You' page and didn't get very far. I'm not sure I learned anything new.

Sometimes there are deep sink-holes along the way...

Your post above is excellent--I have many of your folate deficiency symptoms. How much have you found is enough now that you have a bit more B2 on board?

I guess I'm lucky in that my thyroid seems to be ok (knock wood). Just one foot in front of the other.