Need larger and larger B12 doses

I've been on B12 for a few years now, with a fantastic, yet diminishing, effect. Started with pills, went on to the common shots and and when they had no effect anymore I went on to cobalamin. The problem is that the effect has been diminishing all the time. I'm now up in huge doses, 10 mg/day, and still I have to stop using it every other month to make it work again. And I'm really ill when I'm not on it.

Does anyone know why this happens? And, does this mean that Rich's protocol will have no or little effect on me? I wish I could make it work again, my body obviously needs it.

Thanks,
Nina

Too bad you had no effect. I have had effect with every kind I've taken but it always wears off.

It's called Mekobalamin, a version made to be as alike the body's own as possible. It's produced by the Swedish pharmacies, not by any private company. Much more effective than the cyan-whateverit'scalled that I took before (sorry, my foggy brain doesn't like the translating).

I take about 10 mg/day now. I have tried acetylcystein, my doctor said it might enhance the effect, but I noticed no difference. Never had any effect of Folate either.

Is there any other way I could make it work again. I'm scanning through the former discussions but I just got here and it's a lot to read.

Hi Ninan (and welcome) im afraid i dont have an answer, but im also very interested to find out what is going on here. I started on Methyl b12 Injections- at a much lower dose than you, for a couple of months now ive been getting very good results - ive felt such a lot better, but now, even though i have upped the dose i have gone into a massive crash and feel just as bad as i did last year before the b12 - sublinguals did absolutely nothing for me.
I cant work out if the b12 has stopped working or if i have been doing too much due to the b12 making me feel more capable (bit of light gardening, more houswork, more talking, going out 3 times a week)
I look forward to tohers comments here.
Take care, Justy.

Hi Y'all;

I'm certainly not an expert, especially with chemistry, so I'll just bring up a little about what I'm learning from observing people's posts and some case studies I've read.


Although many of us have learned this here, I'll repeat it again,because, not only is it repeatable, but it also helps me in my own process when I repeat it.

The co-factors that Rich and Freddd suggest to us in the methylation protocols, particularly Folate, aid with the bioavailability of B12. They are important companions.


Also, many people find that they feel better with subcutaneous injections of B12 over intramuscular ones. Even though B12 is water soluble, it seems that injecting it into fat helps to modulate the delivery,certainly by slowing it down. But also there is some evidence that fatty acids may help with the bioavailability of B12.


There are various fats that are suggested in the protocols here, such as lecithin, etc. I would also suggest that the fatty acids found in coconut oil and butter may also be considered, as they may help absorption. They prime the cell membranes in a way that makes them more permeable to nutrients. B12 is such a big molecule, it needs alot of help getting into cells.


There is a chemical compound called SNAC, an acronym, that has been used recently, to enhance the availability of B12. Maybe the chemistry scholars here can understand it's actions. All that I've been able to gather from it is that the C in the compound stands for Caprylate, Caprylic acid, found in foods such as butter and coconut oil.


Although I've been generous to myself with these foods, especially in recent years, I still easily become B12 deficient if I don't take 10mg.s or so of Mb12 subs. daily. But I suspect that these fats may be helpful along with the cofactors discussed here.

Hi Justy,

This is the way it's worked for me:

I started a few years ago, as stated above. When the effect wore out I always thought I was getting worse so I doubled the dose, changed to new versions etc. When I finally got to 5 mg/day I was afraid I would be almost dead without it. So I tried, and well, I went from maybe 7 to 2-3, that is, I went back to where I was before. I was even a little bit better than before I started. So, my experience is that I (and some other people I've heard of too) develop som kind of "tolerance". Maybe this is what happend to you too?

Still I would very much like to have som smart people's notions on why this happens, and preferably some advice on how to make it work again. I so miss my energy...

Crux,
Thanks for the tips! I haven't changed my diet much during this time (well, maybe started eating more fat and vegtables), so I don't think that's the cause. Still this SNAC made me curious. Anyone knows what the rest of the letters mean? Could't find it anywhere here on the forum.

Nina

Hi Ninan, your experience does sound similar to mine - although you have been taking it for longer than me. I have upped my dose this week with no effect at all.
I am not doing the whole methylation protocol as i dont have doctor support and am not happy messing about with these things on my own - i can be ridiculously sensitive to things like supplements.
My injections are sub cut.
Thanks Crux for your info - My M.E doctor recommends lecitihin and coconut oil. I had to stop taking coconut oil as it was piling on the pounds (contrary to what my doctor said) im now for the first time in my life on a low fat diet to lose weight gained since i was ill - but low fat i have to say doesnt seem compatible with having M.E
all the best, Justy.

Hi Y'all;

I hope I haven't brought up something that could be nettlesome. One of my limitations is that I don't trust myself to provide links yet. I don't want to send folks out into the "inter-ether".


I found SNAC some months ago, searching around for substances that could aid with the bioavailability of B12. I found some abstracts that described it's use with B12, (cyanocobalamin). I can only imagine that it may require a prescription. I'm not sure if it can be obtained through a chemical supply store. This is all beyond me.

I agree that fats need to be taken in moderate amounts. I put about 1/2 tablespoon of coconut oil in my morning smoothie, and I use about 2 tbl. of butter daily.

I remember trying a supplement of caprylic acid back in the 80's, when I learned about candida. I don't remember any specific effects from it. Maybe it's worth a try?


I also remember craving B12 foods as a child: liver, rare,even raw beef,and sardines. Although my appetite has changed now, I think my instincts back then were better.

Some people here have discussed taking supplements that included intrinsic factor, but I don't know if they've reported results.

Some people, most notably, Freddd, requires very high dosages, including injections and subs. daily.

This is a subject worth pursuing....B12 bioavailability. I do believe that the prorocols here are the best for healing. But I also believe that we still must find for ourselves which ones and the amounts that suit our profile.

Hi Y'all;

I've been trying to find out more about how to obtain SNAC, but I still don't know. Maybe pharmacies can get it with a doctor's prescription. Its also been used to enhance the absorption of heparin and insulin. The amount that was used in the study conducted with B12 was 100 mg. It was printed in the Elsevier Journal. SNAC is the acronym for the compound
Sodium N-[8-(2-hydroxybenzoyl)amino]caprylate.

When I used the key words ," absorption enhancer", I did find that piperine, an extract of black pepper, and aloe vera gel have been useful as absorption enhancers.

Hi Crux,

From what I've found about SNAC it's a way of making sure a bigger percentage of orally taken B12 to be taken up. Since I use shots I don't see how it could help.

Hi Nina,

I've been at this for 7 years of injections. I've been through all the ups and down. Since you are using mb12 from a pharmacy (PM) it may be that it isn't as good an mb12 as some others. Also the pharmacy could be exposing it to light. If you are not wrapping the vial and syringe in foil and expose it to light, it is deteriorationg every second you can see it's red color. Further, b12 by itesle runs out of ooomph. It needs Metafolin and cofactors. It needs adb12 to powwer the mitochondria. Do you have Subacute Combined Degeneration? This is a neurological deterioration of the cord and brain with demyelination and other damages. If so we need to be taking about specifically reversing this.

I guess it must be the running out of oomph-thing that is my problem. Since it worked fine before. I have tried folic acid and acetylcystein since my doctor said it would enhance the B12 effect, but I noticed nothing at all.

I don't know about neurological damage, never had it tested. I do feel tingeling in my hands sometimes and recently my arms and legs have started to twitch now and then. I am experiencing the typical ME brain fog, much much more when I'm not on B12. When it had the best effect I was working almost full time. Now, without it, I'm house- and bedbound most of the time.

My doctor is a neurologist, maybe he can do some tests? Not seeing him til May though.

From what I picked up here, folate acid is bad news. Didn't get why though?

Thanks for caring!

Hi Ninan,

Folic acid has limited convertability to methylfolate and some people can't do it at all. Folic acid can build up and block methylfoalte in some people. It can be all sorts of reasons from lack of metafolin to lack of magnesium, vit D, adb12, vit A Vit C, l-carnitime fumarate and others. This is all deptermined pragmatically by people have healing turned on by these other items after mb12 has run out of steam.

Sorry to hear about the weight gain. Contrary to traditional medicine opinion, fat does not put fat on. It does however if you combine it with carbs. In short a low carb diet works (a ala Atkins style). REad Gary Taubes, Good Calories Bad Calories. He came to write this from an objective stance in that he was a science journalist and had no views on the topic until he came to research this issue.

And for ME sufferers trying to fix the gut, nothing better than getting rid of those carbs.

Can say more on this if you like but otherwise, good luck!

Btw, Coconut oil is great to cook with. Substitute it for other polyunsaturated oils. It has a very high burning point, higher than polyunsaturated oils.

Ok, so shopping it is. I will try metafolin, adb12 and that fumerate l-carnitine and see if it helps. I so hope it will!

Still wonder about the brain damage thing though, it didn't sound good. Is there a risk? And do I do something special to reverse it? I was wondering why I get this twitching.

Hi Ninan;

I found that the B12 worked for the tingling of the nerves, and cognitive function. The folate is also helping memory and fatigue. For twitching, the potassium helps me.

What brain damage?

Hi Adreno,

I was referring to the Subacute combined degeneration that Fred mentions above.

High dose folate and b12 should take care of that, if you have it.