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Why does B12 not work for me?

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
I take methylpro (specifically this one: http://www.methylpro.com/product/B-Complex_Plus_15mg) and initially I was self injecting methyl B12. Since it didn't seem to work and I didn't have time to inject before work, Dr K. suggested I try the sublingual pills. They don't work either? (yes, methyl- also)

It seems most people here either have a positive reaction, or a negative reaction. I have no reaction.

I also asked a question that didn't get a response (thread here: http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/). In Cort's first post, he makes a comment that I had quoted, I will copy/paste my question from that thread.

  • Some people are totally incapable of converting these to active forms because they lack the enzyme
Is there any way of finding out if one has or lacks this enzyme? Sorry if this has been touched on in this thread, but I'm not reading 174 pages to find out! I never had any benefit at all from injectable B12, nor the sublinguals. I have wondered if my liquid had received too much light in the refrigerator. I wrapped it in aluminum foil, but that was after a week of being in bubble wrap... But now the sublinguals do nothing either.

And if it matters to anyone responding to me, my B12 blood levels is now over 1500. Current as of May 2016.

Thanks in advance!

So could I lack an enzyme? If so, how to test? Is there something my body is needing to be taken with the B complex and B12? I'm just so confused why it does as much as water...

For the record, the only vitamins I am currently taking are C and D, due to MCAS stabilizing properties. Since nothing works, I am for the moment only taking my antibiotics for bartonella, and my MCAS meds.

And once again, thanks in advance
 
Messages
67
I take methylpro (specifically this one: http://www.methylpro.com/product/B-Complex_Plus_15mg) and initially I was self injecting methyl B12. Since it didn't seem to work and I didn't have time to inject before work, Dr K. suggested I try the sublingual pills. They don't work either? (yes, methyl- also)

It seems most people here either have a positive reaction, or a negative reaction. I have no reaction.

I also asked a question that didn't get a response (thread here: http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/). In Cort's first post, he makes a comment that I had quoted, I will copy/paste my question from that thread.



So could I lack an enzyme? If so, how to test? Is there something my body is needing to be taken with the B complex and B12? I'm just so confused why it does as much as water...

For the record, the only vitamins I am currently taking are C and D, due to MCAS stabilizing properties. Since nothing works, I am for the moment only taking my antibiotics for bartonella, and my MCAS meds.

And once again, thanks in advance

One possibility is low lithium, which is needed for transport of B12 and folate into the cells. Like you, I've had little to no response from B vitamins, but recently unveiled hair mineral testing for lithium which puts me in the 1st percentile, so I'll be following up with serum levels later.

As for the bit you quoted, it refers to the earlier point: "They take an inactive b12, either cyanob12 or hydroxyb12." They lack the enzyme necessary to "translate" these forms of b12 to methylb12, not that they need an enzyme for methylb12 to work.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
@helen1 @TigerLilea Last December my B12 was 313 (range 200-1100). In May it was over 1500, with range 247-911. So I went from low to beyond high with no symptom improvement. Maybe my low isn't low enough?

@Kierkegaard I just want to make sure I understand, the enzyme doesn't matter because I take the methylated one?

And Lithium, should I get a hair test? Or just go straight for the blood test? Also, if I may ask, when you were that low, did you have any emotional symptoms at all?
 
Messages
67
@helen1 @TigerLilea Last December my B12 was 313 (range 200-1100). In May it was over 1500, with range 247-911. So I went from low to beyond high with no symptom improvement. Maybe my low isn't low enough?

@Kierkegaard I just want to make sure I understand, the enzyme doesn't matter because I take the methylated one?

And Lithium, should I get a hair test? Or just go straight for the blood test? Also, if I may ask, when you were that low, did you have any emotional symptoms at all?

Yes, the enzyme doesn't matter because you take the methylated one. Methylb12 gets around the problem of needed conversions involved with cyano-, hydroxy-, and adeno12. For lithium, it depends on who you ask. Amy Yasko is a firm believer in hair testing, but a person who works for her who marked up my mineral analysis said to follow up with serum testing. I'd recommend getting hair mineral testing for no other reason than to rule out heavy metal toxicity, which is what professionals generally agree on for the value of hair testing (they're more divided on mineral testing). This is the one I used: http://www.holisticheal.com/hair-elements-test.html

When you say "when you were that low," I don't know what that means, seeing how it's possible I've had this deficiency for a while or even all my life. I definitely have mood changes, but I have a lot of other things going on too, such as thyroid problems.
 

CCC

Senior Member
Messages
457
We've found it takes more than just B12 (and certainly more than just methyl B12).

From reading here, people seem to find it takes B2 (certainly our experience), sometimes a form of folate (methylfolate is most popular), other B vitamins, and often minerals (iron, manganese, magnesium ...). There'll be much more than this, but these are some of the things I remember because they are the ones that were most help to us.

It looks like you're not processing all that b12 too well, so it might be time to look around at what else is missing. I know that all that reading can be hard going, but it pays off. Also, read the document by @caledonia that gives a low and slow approach to taking B12.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@Strawberry - Do look into the cofactors others have mentioned (see CCC's post especially) and you may need lithium as well. Here's a link to Caledonia's info on methylation: http://forums.phoenixrising.me/index.php?entries/caledonias-methylation-links.1744/

I did B12 shots off and on for several years and never noticed a difference. I used sublingual B12 (methylcobalamin) for several years, and also never felt any different. I was taking everything recommended. And then I started using Bluebonnet liquid methylcobalamin - 5000 mcg. - 2 or 3 times a day - and for the first time I felt a difference. So I'm guessing I was just wasn't able to utilize it in other forms. Some people get good results with transdermal B12. I'd like to try it but it's pricey, though the Bluebonnet is not cheap. I think if I had done shots 2 or 3 times a day, instead of 2 or 3 times a week, they might have been more effective.

And folate for me also was very important. I currently take 2400 mcg. a day (in divided doses). And if you start folate, be sure to read about potassium and how potassium levels can tank. And if you start liquid or transderal MB12 and it suddenly starts helping, it can cause potassium to drop as well. There are several threads on the board about potassium and methylation and Caledonia mentions it too.
 
Messages
67
@Mary, do you think it was the brand you were taking? I've heard a few people say that this brand worked for them but not another brand for multiple supplements.

@Strawberry, Dr Lynch has a neat supplement called B Minus which has all b vitamins minus folate and b12: https://www.amazon.com/Riboflavin-P...e=UTF8&qid=1475784782&sr=1-1&keywords=b+minus. His supplements are quality since he formulates them.

It's also possible that you might respond better to adenob12 or even hydroxyb12 than methyl-. Others would have to chime in here if this is possible. Have you had a genetic profile completed, i.e., from 23andme.com? Sometimes polymorphisms like COMT can cause problems with methylated supplements, but that's a bit of a controversy.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
@Kierkegaard Thank you for the link, I had no idea I could just mail off a hair to be tested! I will do that soon. My ND had actually suggested a hair test, but we never did for what ever reason.

@CCC My methylpro has 25 mg of B2 and 15 mg of methylfolate. Is that enough, or not? I have also tried magnesium to no avail. My iron is sky high (which concerns me as I am nearing the age of pre menopause) so that (IMO) leaves me with manganese? And Lithium?

@Mary Re: potassium. I also sometimes take a low salt substitute (low sodium high potassium) called Wright Salt that I put in my water. It hasn't helped either, nor did I ever have muscle cramps as if I were low potassium from the B12. So I will have to look into the other stuff. It just seems so expensive (and fruitless) to take a little of this, a little of that, over and over and it not work!


BTW it was Caledonia's links that taught me not to take Bs with ALA. So I quit ALA. But it still didn't help with energy, or feeling of any type of improvement. It will be interesting to figure out what it truly is! I'm just so desperate to be able to cook and clean my house again, maybe garden. Or go grocery shopping!
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
@helen1 @TigerLilea Last December my B12 was 313 (range 200-1100). In May it was over 1500, with range 247-911. So I went from low to beyond high with no symptom improvement. Maybe my low isn't low enough?
To give you an example, my ferritin levels went from an average of 27 - 32 up to 121 post menopause. However, it has not made any difference to how I feel. My energy is still very low. So that tells me that ferritin wasn't an issue for me. In all likelihood, your B12 level at 313 was working for you. You want to be careful that you don't take too much of one vitamin and end up causing problems because the body can't handle that much of it or it puts other vitamins or minerals out of balance. I think too many people with CFS/ME expect miracles from vitamins supplements which they were never intended to do.
 
Messages
67
@Strawberry, getting the hair can be a pain, and I'm a male with shorter hair. Have someone who can do it for you, and if possible use a gram scale so you can get the exact amount needed rather than using the paper scale thingy they give you, which requires more hair than needed.
 
Messages
67
To give you an example, my ferritin levels went from an average of 27 - 32 up to 121 post menopause. However, it has not made any difference to how I feel. My energy is still very low. So that tells me that ferritin wasn't an issue for me. In all likelihood, your B12 level at 313 was working for you. You want to be careful that you don't take too much of one vitamin and end up causing problems because the body can't handle that much of it or it puts other vitamins or minerals out of balance. I think too many people with CFS/ME expect miracles from vitamins supplements which they were never intended to do.

Was that a one-time ferritin check? Because inflammation can jack up ferritin.

Also, supplements can work very well judging by the poll around here somewhere on Freddd's protocol, which caused something like 50% of those who voted to have big positive changes.
 
Messages
67
Here are my homo:
RED
Methylation

ACE Del16 rs4343
BHMT R239Q rs3733890
CBS A13637G rs2851391
GAD1 rs2241165
MAO A R297R rs6323
MTHFD1 C105T rs1076991
MTHFR A1298C
MTHFR rs1476413
MTHFR rs3737964
MTHFR rs4846048
MTHFR rs4846049
MTHFS rs6495446
PEMT rs4646406

There are many more hetero, but I think these are the important ones listed under methylation...

Yeah, the homo A1298C definitely means you need supplementation with methyl supplements. Like another poster said, you should consider adding methyl folate if you haven't already. Dan Purser has a pretty good book on methylation called the 85% Solution, which you can get on kindle from amazon.com for $4.99. He has a whole chapter on this homo A1298C, and says it's the hardest of the methylation-related polymorphisms to treat. Might be worth checking out.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
@TigerLilea That is scary that your iron went up to that after menopause. I still bleed completely regularly, and this is recent: Ferritin 288 (10-232 normal). I think you are right about not taking what your body doesn't need. My regular local doctor always told me I didn't need vitamins as I eat very healthy.

@Kierkegaard Good grief, how much hair do they need? Thankfully I am a female and can come up with more a little easier than you. :)