Transdermal B12 oils

[Athene*]

Hi Athene,
Actually I'm cutting down a bit today. Probably on everything. In fact, I was up most of the night with my symptoms, though ultimately, it was a small dose FMN B2 that relieved them sufficiently to enable me to return to sleep for a couple of hours.

I've been thinking about the whole methylation cycle and how once you start things, just stopping the supps for a day doesn't necessarily mean what you've done to 'drive' your system will stop right away. I think this is especially true for the B12. In any case, I used the B12 Oils for 2 days running and ended up overwhelmed with muscular tighness-shoulders, neck, face, and thinking about @Gondwanaland's post about her husband's headaches, caused by the B12, relieved by B2. And her disarmingly simple statement that the methyls you have floating through your system, the more B2 you need. Of course. And certainly anyone with snps in MTHFR, MTRR, and MAO. These genes want folate, or B12 or B2 and in each case, it's the B2 that activates them. At least that's how I understand it.

If you eat a good diet--as Greg says, 'drink some orange juice' for folate, then take the B2 and you'll get the benefit from the folate that you need. Likewise for B-12. @Asklipia eats sheep brains, I think! @globalpilot posted on an old thread I'd been following: http://forums.phoenixrising.me/inde...atric-cns-disorders.28189/page-14#post-716709

I take four supplements mostly. Biotin (BTD), FMN (MAOA, MAOB, MTRR, MTHFR), Magnesium (COMT) and P5P (GAD1). I also changed my environment. Low amine, low protein, low glutamate, low stress. The only one I take everyday is Biotin.

The post was by ppodjahski who is no longer on the forum, but he was a proponent of Nutrigenomics, the study of the crossroads of genetics, supplements and diet, and I admired his thought process. In any case, he's not the only one who says that taking some of these supps daily is unnecessary. So does Dr. Ben Lynch.

Oh well. Still fumbling around.

Athene, you've mentioned that you're a celiac, which many here suffer from--or the less serious gluten sensitivities. My family is in this category, and have struggled with pain issues for years. @ahmo's recent post that included links to gluten cross-reactive substances was a more than worthwhile read and I'll post it again here.

http://www.thepaleomom.com/2013/03/...re-eating-gluten-even-after-giving-it-up.html

My brother-in-law also sent me a terrific podcast that reinforces these findings:

http://justinhealth.com/dr-peter-osborne-no-grain-no-pain-podcast-88/?
inf_contact_key=736187a3e1ee781ca30b21599175e5da9fa31eab8008163ce94a3144edb3b69a

I hope the link works. There's apparently a genetic test you can have that tells you exactly what you might be cross-reactive to, so you won't be cutting out stuff you don't need to...

Cheers, Kath. It's odd, but the magnesium and p5p you mention have been the most challenging for me - took a long time to tolerate both, same with the Adocbl - maybe a sign I'm in need of all of them...

It's very generous of you to share those links. Yes, I agree re cross-reactions. I avoid oats, because even the gluten-free ones don't agree with me and I hate corn, always have. It's in so much isn't it?
I always enjoyed food and ate healthily - never had a sweet tooth, never cared for fast food. It's ironic that having healthy habits hasn't helped a jot. I would love to rely on food for my needs, but the gut-lining can't possibly absorb properly just yet because of damage from my previous years of undiagnosed coeliac disease and pernicious anaemia, not to mention poorly treated hypothyroidism which has it's own gut-related fall-out i.e. reduction of stomach acid.

The good news though is that the methylfolate is really healing the gut now and I hardly ever have problems these days and do seem to be absorbing food a bit better. Not fully there yet, but getting there. Early days, but we'll see...I decided not to use the betaine HCL with pepsin after all - who knows how it might contribute/interfere with methylation. I read somewhere that after the HCL is used up the betaine part works like TMG, so I think I'll let sleeping dogs lie, so to speak, as I seem to be doing ok so far on Freddd's methylation protocol, though somewhat reduced levels of mcbl & mfolate, now that I've introduced higher level b2. I still need a good lot of mfolate, mcbl and potassium, but maybe the b2 takes a few months to take hold. Time will tell, but for now I'm happy to remain on high doses of mfolate and mcbl and potassium. I tried to reduce more the last few days but began to feel rotten and as soon as I increased again, I felt pretty good. My iron had gone really low when I was on the low b2 in @Freddd's protocol, but otherwise the protocol is working pretty well. Again, we'll see. Fingers crossed.

I'm only managing a half of a Source Naturals Adocbl sublingual daily, but without the biotin I was only able to take 1/4 tab of Adocbl so hopefully that will continue to improve. Again, we'll see. I've been knocked back so many times I'm reluctant to see anything as a 'cure', more a work-in-progress, I guess. Maybe I won't increase the biotin any more then, given your experience. Thanks for sharing that.

I'm so sorry you're getting knocked back right now. This damn disease is such a torture and I always remember your phrase about the 'years peeling away'. But isn't it great that at least the b2 is helping, and I really really hope you make some progress soon, and I hope my bit of progress lasts...Sounds to me that a gluten-free diet would be a good idea for you, since it's so much in your family. Tests are useful, but expensive and time-consuming and if a trial of g-free helps you, then why not continue? Very best of luck with it.

Oh, and yes, you're so right about the mb12 - if I overdo it, I feel full of adrenalin again, and then have low potassium symptoms again because of the aldosterone dumping. Similarly to you, the b2 is helping me with that, and I have lessened the potassium need, but it's early days...

 

[garyfritz]

Gary, have you considered that your positive response to and need for b12 could be immunological and not so physiological? It really seems to me like youre quelling an inflammatory fire with it and the details fit that theory quite well. My experiences are similiar and nothing works as well as b12 as an antiinflammatory for me.

@impossible, that's a fascinating possibility I had never even considered.

I don't think I would recognize the symptoms of an inflammatory response. It sounds like chronic low-grade inflammation might not show noticeable symptoms. I suppose I could have my doctor test me for CRP levels?

Perhaps you could try other similarly acting potent antiinflammatories,

What would you suggest? Curcumin or something like that?

In general I'm really quite healthy. I'm fairly active, I'm underweight if anything, I eat fairly healthy including anti-inflammatory foods like avocados, nuts, whole grains, fish oils, etc. Maybe eat more red meat & full-fat dairy than I should (I seem to need a lot of meat protein), don't exercise as much as I should, too many hours parked in front of the computer -- but other than that pretty healthy. I'm not sure what would cause inflammation or how it would manifest.

 

[impossible]

Lol, i think ive dealt with every "systemic" inflammatory type symptom possible, caused by reactions to virtually anything you can imagine. My immune system is out of control, thats my primary problem. Im a bad lyme/mercury victim still in treatment.

Theres ALOT of different ways that can manifest itself. My ex-girlfriend used to get symptoms very similar to yours from eating yogurts cultured with a certain bacteria. She dealt with it for years clueless to the correlation until i pointed it out shortly after we met.

Use your imagine as to what can cause things like that to happen, you could tell me anything in a case like yours at this point and i wouldnt be surprised. If something like that is happeneing with you, it sounds like its pretty consistent, so it seems that could be caused by a bug (theyre pretty much always there) or maybe some physiological process is pushing your immune system in that direction.

If i were you, i would put some effort into looking for bugs and would consider the possibilty of a hypersensitivity to anything that doesnt have your dna.

Ive had crp and sed rate done several times in the past to try to make sense of it, only a few times were either one elevated. I'll put some thought into what other possible markers you could look for, its been a while since i put any thought or effort in that direction.

Also, there were periods, depending on where my immune system was at and what i was sensitive to, where my symptoms were dramatically elevated at night. It was like they were on a schedule even. I figured that was due to diurnal hormone changes.

The closest thing ive found in effectiveness and similarity to mb12 is really freakin cold showers, or sometimes nsaids. Next best would be a whole arsenal of supplemental/herbal anti-inflammatories, ie fish oil, pure egcg, buhner herbs etc. Nothing has been consistent across the board, it varies depending... Nothing has been as bad@#$ as high dose mb12 for alot of things though.

If this idea turns out to have legs, you might want to check out Dr. Ty Vincents work developing low dose immunotherapy (ldi). An alternative doc from pennsylvania with a radio show had him on last year and what theyre discovering as far as loss of tolerance and related problems is pretty astounding. I recommend giving it a listen anyways.

 

[impossible]

LDN has proven to be very useful at times as well for similar things. Ive been on and off of it twice now. In fact, its worked very well for those type of symptoms for me.

 

[garyfritz]

My symptoms also flare at night. I've been assuming it was due to B12's importance to the melatonin cycle. Might be interesting to try aspirin at night, instead of B12. NSAIDs don't usually do anything for me -- I don't take aspirin for headaches &etc because it doesn't seem to do anything -- but maybe it would lower inflammation enough to reduce the night-time symptoms? Worth a try. I should look into LDN too.

I'd rather try that than the whole elimination diet process. That seems to me like shooting a house with a shotgun because you think there might be a fly inside. **Maybe** one of your pellets might make it inside and hit the fly, but ...

 

[impossible]

Lol. The MRT test is supposed to be a good one if one wanted to explore in that direction and would rather drop a few bucks instead. It looks like the most thorough. Ive chatted with a couple more "normal" people that used it and had alot of success eliminating various symptoms and general crappiness when ditching their positive foods.

 

[impossible]

I think theres a pretty good chance theres some answers and relief down that road for you . I wish you luck on your ghost chase and ill be sure to check in periodically. If you ever have any questions feel free to fire away.

 

[Kathevans]

Hi @Athene* Just a couple of thoughts here. I have tried to take Betaine HCL more than once and each time it effects my insomnia. I believe I've read it's the first step in the methylation cycle. Maybe! Anyway, I stay away from it and use lemon juice and fermented sauerkraut for digestive issues. I probably still need digestive enzymes, but I feel I've made progress. This is one of the few things I'm sure of.

And then there's so much that I'm not. The high dose of B2, that is over 55 or 60mg, doesn't seem to be working for me. It may be that I need to take it slower. And I may experiment with that. But yesterday I noticed for the second time that as soon as I add folate to the mix, my potassium needs seem to spike. Either that or my folate deficiency symptoms kick in. I was up all night drinking potassium, which seemed to help the irregular beats that were with me every couple of hours.

Interestingly, I'm beginning to think that I did better on higher MeB12 and Folate than I am now with the addition of the high B2, though I can see clearly that the B2 does reduce the need for folate, that is, if it's in circulation, it helps activate what folate you do take.

Maybe I'll lower the B2, or keep it around 40 as @Johnmac does. I keep thinking there must be a balance, I just haven't found it yet! I do believe in Freddd's protocol, or at least a variation of it suited to each of us. Like you, it takes a lot of work to titrate up with a particular supplement. I love how the adoclb makes me feel, until it begins to push my need for folate/ or is it B2. Possibly higher levels of the B2 will help me tolerate it more... And is there a connection between biotin and adcbl? I actually stopped taking 500-1,000 mcg extra as I couldn't tell if it was helping or hurting. Taking 1/2 of the Source Naturals is 1500mcg, right? I remember feeling terrific stamina with that coursing through my veins!

I really understand how the folate makes you feel better. When I added it yesterday, I just felt more like the 'real' or the 'best' me I know. I had some energy. Nothing overwhelming, mind you, but enough to carry me to bedtime without feeling as if I needed to collapse. This was on only 300mcg of folate in divided doses.

I'm feeling a little weary just now. Too much staring at my Excell chart and not being able to extract much from it--other than chaos.

It's nearly two weeks that I've gone off all gluten cross-reactive foods and I am feeling pretty good. I can't tell if it's made any difference because there's so much else in the mix. But I'm feeling healthy. And enjoying soups with broths, salads, meats, veggies, seeds and nuts, a little fruit. I did find a chocolate here that is dairy free and very low sugar and if I'm feeling a craving, I have a square or two. It's a great local company you /anyone could order from--although I don't know if they ship internationally--I'm taking it that you're in the British Isles, though possibly you just studied British English. I'm guessing!

LINK: https://www.tazachocolate.com/

Chocolate is always a good note to end on!

 

[Athene*]

Glad the g-free is going well for you, Kath. Wouldn't it be fantastic if that turned out to be a game-changer for you? I have heard of others feeling hugely improved just from going g-free, though alas not in my case.
The Source Naturals dibencozide I use is 10mg. So I'm getting 5mg daily (sublingual). The daily dose is 10mg, but I'm working up to that.
The b2 isn't in me long enough to decide really. I attributed some changes to it too soon that were really just coincidental, so I had to go back up on the folate and potassium. Now on mfolate 20mg and potassium 2k. Still, at least it's better than where I was on 40mg and 3k. If I try to cut any more I get rotten symptoms - the whole works. I'm really hoping I get somewhere with the b2, but nothing as good as Johnmac yet, then again it is only 20 days so far. We must update each other on our b2 progress along the way...
There is a connection with Adocbl/Dibencozide and biotin, at least according to Greg. He says the biotin is necessary for the Ado to work properly and that the Ado sides were from lack of biotin. For me it seems to definitely be helping to raise the Ado the past 10 days, but we'll see how it goes.
Thanks for the chocolate link by the way! Chocolate is always welcome, and such a comfort! I get a sugar-free one here occasionally but it has sweeteners and it doesn't look half as nice as yours!

 

[CCC]

Interestingly, I'm beginning to think that I did better on higher MeB12 and Folate than I am now with the addition of the high B2, though I can see clearly that the B2 does reduce the need for folate, that is, if it's in circulation, it helps activate what folate you do take.

I don't know if this helps you at all, but based on something @ahmo said, we took 1 sublingual FMN tablet (18mg), and take only a quarter at a time. As for ahmo, the effect was instantaneous with the first sublingual.

Usually we'll take 2 quarters a day (1 in the morning, 1 at night), and sometimes more if the body craves it.

A consistent, low dose is apparently much better than inconsistent high doses.

We also found that straight B2 (riboflavin) did very little.

EDIT: It's a transdermal B12 oils thread - so should add that all this has been on top of the ado/mB12 oil and methylfolate.

EDIT2: clarified text to say two quarters of FMN, not two tablets

 

[Kathevans]

@CCC You're absolutely right. We got side-tracked. My apologies... But what does often come in is the Greg, B-12 Oils guy's information. I think it was his emphasis that got us into the B2, just as @Athene above talks about his further advice that difficulties/sensitivities with Adcbl is a problem with Biotin. I have the B-12 transdermal oils and have had trouble tolerating the squirt more than one or two days in a row. In the end I think the B2, which as you say you take over the course of the day, helps reduce the amounts of B-12 and folate that you need.

I hadn't known that straight B2 as riboflavin was ineffective. Greg dismisses the co-enzymated forms of these vitamins, so I did get a Thorne low-dose B2, as r-5-p--which is FMN, that I've been using. But it isn't sublingual. Interestingly, I never felt any results form the B2 in my multi--which admittedly was never more than 20mg., but I do have plenty of the Source Naturals sublingual as well. I'll concentrate more on that. I have been taking it in 1/4s.

Do you find it increases your need for potassium?

Ok, @Athene, next time I post, it will be back at the 'B2 I Love You' Thread:http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/page-52#post-716903

 

[Kathevans]

biotin is necessary for the Ado to work properly and that the Ado sides were from lack of biotin.

Maybe my biotin deficiency is at the root of some of this... I'll go back to balancing things a bit more and try, try again...

 

[garyfritz]

@impossible, that's a fascinating possibility I had never even considered.

I don't think I would recognize the symptoms of an inflammatory response. It sounds like chronic low-grade inflammation might not show noticeable symptoms. I suppose I could have my doctor test me for CRP levels?

What would you suggest? Curcumin or something like that?

Hi @impossible,

As an experiment I found an anti-inflammatory product containing Curcumin, Boswellia, Bromelain, and Quercetin. I've been taking it for over two weeks now and I haven't noticed any changes or improvements. So as a first test, I don't seem to respond to those anti-inflammatories. Could be that they're targeted more at joint inflammation than systemic inflammation, but it seems like there should be SOME effect if this is an inflammation effect. I haven't tested asiprin at bedtime yet.

 

[ahmo]

I've found celery extract excellent as an anti-inflammatory. I used to use it regularly for my arms. This week used it following extensive dental work. Brilliant. Not sure how this product compares to some other form of celery, eg seeds., but it's cheap enough in any case.

 

[Johnmac]

From what Greg has told me about potassium, & refeeding syndrome:

When mB12-deficient people get a good hit of mB12, the precursors that have built up in the adrenals start uncontrollably making high amounts of adrenalin. If you don't have enough B2 onboard, MAO doesn't work & you have an adrenalin OD. If highly mB12-deficient, you also get a big dump of aldosterone into the serum - which causes massive potassium loss by the kidneys > fatigue, weakness, cramps, irritability, tingling/numbness, thirst, etc.

It all has to do with adrenal fatigue & a lack of methylation to make adrenalin.

I don't understand it well, but thought it might be useful to summarise it for those who might.

I note the centrality of B2. Personally, adding this is seems to have removed my need for K, carnitine, & much folate.

 

[Kathevans]

When mB12-deficient people get a good hit of mB12, the precursors that have built up in the adrenals start uncontrollably making high amounts of adrenalin. If you don't have enough B2 onboard, MAO doesn't work & you have an adrenalin OD. If highly mB12-deficient, you also get a big dump of aldosterone into the serum - which causes massive potassium loss by the kidneys > fatigue, weakness, cramps, irritability, tingling/numbness, thirst, etc.

Wow. That pretty much describes what's been going on with me. Possibly. I have been upping and downing my B2 dose trying to figure things out, but of course, there are always too many variables to micro-manage like this. What might be clear is that I currently need more than 40 mg of B2 each day, that at least 4,000mcg of B-12 feels good (I think tomorrow I'm going to do 1/2 a blob of the oil!) and I have no idea how much folate I need. Just before the sleepless jag last week, I had been experiencing periods of real joy, I would say almost euphoria for hours at a time, often in the evening. I may just have gone over the edge of that particular precipice!

I stopped my low dose B Complex today because I haven't been sure that it isn't driving some of my tightness and using the pendulum approach to asking my body what it wants, it decided against this today! (@ahmo I keep trying!)

I slept great last night for me--1/4 valium to let go I was so overtired--but 61/2 hours up only once. No extra potassium beyond the high-enough dose of potassium @ 5 x 300mg, or 1500mg along with a daily glass of coconut water and bowl of lentil/squash soup.

On the other hand, I also had two small slices of gluten-free pizza ( a first in 3 or more weeks as I've tried to cut out all cross-reactive gluten food stuffs) and it's entirely possible this made my heart happy. I've tried diets close to paleo before and the lower the carbs, the more agitated the heart. This is not only my experience, btw. It's fairly common on paleo community threads. Maybe I just need to add more complex carbs!

My sister always said I had a very coltish heart...ready to gallop at the first sign...

Thanks, Johnmac.

 

[Johnmac]

No worries, & good about the euphoria. It may not last, but it's a good sign that you are on the way - i.s. that the B12 is restoring your serotonin. I no longer have the frank euphoria, but my appreciation os nature is huge now - almost a bit trippy when I walk thru the nearby forest.

50 mg/day of B2 continues to work for me. Greg thinks I can cut it to 25 in a while. (The RDA is tiny.)

When I lived in Cambodia (till Feb) I hadn't got into B2, so still had a big potassium demand from the B12. I probably kept the local coconut industry alive single-handedly. They chop them open in front of you with a cleaver, stick in a straw, & charge you $1.25.

Wow. That pretty much describes what's been going on with me. Possibly. I have been upping and downing my B2 dose trying to figure things out, but of course, there are always too many variables to micro-manage like this. What might be clear is that I currently need more than 40 mg of B2 each day, that at least 4,000mcg of B-12 feels good (I think tomorrow I'm going to do 1/2 a blob of the oil!) and I have no idea how much folate I need. Just before the sleepless jag last week, I had been experiencing periods of real joy, I would say almost euphoria for hours at a time, often in the evening. I may just have gone over the edge of that particular precipice!

I stopped my low dose B Complex today because I haven't been sure that it isn't driving some of my tightness and using the pendulum approach to asking my body what it wants, it decided against this today! (@ahmo I keep trying!)

I slept great last night for me--1/4 valium to let go I was so overtired--but 61/2 hours up only once. No extra potassium beyond the high-enough dose of potassium @ 5 x 300mg, or 1500mg along with a daily glass of coconut water and bowl of lentil/squash soup.

On the other hand, I also had two small slices of gluten-free pizza ( a first in 3 or more weeks as I've tried to cut out all cross-reactive gluten food stuffs) and it's entirely possible this made my heart happy. I've tried diets close to paleo before and the lower the carbs, the more agitated the heart. This is not only my experience, btw. It's fairly common on paleo community threads. Maybe I just need to add more complex carbs!

My sister always said I had a very coltish heart...ready to gallop at the first sign...

Thanks, Johnmac.

 

[Kathevans]

When I lived in Cambodia (till Feb) I hadn't got into B2, so still had a big potassium demand from the B12. I probably kept the local coconut industry alive single-handedly. They chop them open in front of you with a cleaver, stick in a straw, & charge you $1.25.

Wonderful image from another culture. And sounds delicious as well. I'm glad your K+ needs have diminished over time with the B2. I've just been freaking out that when the time comes for a family vacation to Paris and the South of France (to see family) in July/August, I'll be overwhelmed with supplements/potassium taking/and sleeplessness. An overall basket case. If I can steady things, I'll be in heaven, never a having been to the SoF.

Interestingly, I did see my cardiologist just last Wednesday and she did some electrolyte blood work. My potassium was at 4.0. (according to Fred low enough that I could have been experiencing symptoms) Sodium slightly low. I kind of love her because she was willing to contemplate a potassium supplement for me, though openly expressed her concerns/fears over the fact that she wasn't sure of the equivalency of supp vs script. I had to agree. I did make sure to tell her that just prior to heading into her office, my heart had been bobbing around and settled nicely with my 300mg dose of gluconate. My ekg was completely normal and rhythmic. Well, if I'd though clearly ahead, I might have just waited on the drink. But then I wasn't sure how long I'd be sitting in the waiting room!

I can have a halter any time I want, she said. I have been haltered several times before and right now it seems like one more thing...

 

[CCC]

... I have been upping and downing my B2 dose trying to figure things out, but of course, there are always too many variables to micro-manage like this. What might be clear is that I currently need more than 40 mg of B2 each day, that at least 4,000mcg of B-12 feels good (I think tomorrow I'm going to do 1/2 a blob of the oil!) and I have no idea how much folate I need. Just before the sleepless jag last week, I had been experiencing periods of real joy, I would say almost euphoria for hours at a time, often in the evening. I may just have gone over the edge of that particular precipice!

Dr B12-Oil told us to keep up a low and consistent B2 dose - we need to build up the b2 as enzymes and then proteins turnover in the body. Because we use FMN (thanks to ahmo), we do 1/2 tablet each in the morning and evening (actually, was 1/4 until 2 days ago), then as demanded by the body. It seems to be a maximum ever of two tablets in a day, but taken always as 1/4 to 1/2 a tablet. The FMN demand symptoms are a bit like methylfolate, but not quite.

 

[Kathevans]

Dr B12-Oil told us to keep up a low and consistent B2 dose - we need to build up the b2 as enzymes and then proteins turnover in the body. Because we use FMN (thanks to ahmo), we do 1/2 tablet each in the morning and evening (actually, was 1/4 until 2 days ago), then as demanded by the body. It seems to be a maximum ever of two tablets in a day, but taken always as 1/4 to 1/2 a tablet. The FMN demand symptoms are a bit like methylfolate, but not quite.

I do find my body's response to the FMN is immediate, so I know what you mean. Still I wonder if taking B2 orally gets into your system, but more slowly. To that end I've been taking about 10mg r-5-p orally with my dinner and it seems to keep my symptoms at bay for most or all of the night--so far.

But as I say, I'm experimenting. I know you're right as to consistency and now that I understand it all better--particularly as my body responds to it--I'm more committed to maintaining a dose of 40-50--which is what you're doing with 2 of the Source Naturals, though you may be getting a bit more if you still take a multi, which I believe @ahmo does.

So good to have confirmation from other sources.

As to deficiency symptoms being similar, indeed. This is the tough part, trying to parse it all. I just upped my folate today!