• 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 (FM), 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.

A B2 story

Messages
66
interesting and good to know. I started with 8 mg today.

I also reread what Cutler says about manganese in Hair Test Interpretation and I think he writes more about manganese than any other mineral, at least two full pages. It seems that one of his main concerns is that people with lead and mercury toxicity are extra susceptible to manganese toxicity because the three are synergistic. I do have lead and mercury so probably won't try anything higher than 8 mg...

I would have started with a lower dose and not thought about any "high" or "target" dose, because you say you are mercury toxic (which causes all sorts of idiosyncratic problems) and therefore you just may not feel good with it at any dose.

My wife and I (both of us are mercury toxic) started at 1.25mg. It gave her problems at that dose (she can't tolerate most supplements) and stopped taking it, and I eventually took 40mg but it took a few months. I stopped taking it because after stopping with the molybdenum, I couldn't feel any beneficial effect from it when I tried it a few more times. It also interacts with other minerals, and sometimes its hard to figure out whats going out of balance.
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
As I said before, had it not been for the 23andme test, I would likely stayed away from manganese. My SOD status of one ++ and two +-, made me reevaluate this. I am now on 20 mg/day - it is part of a multi that I take.
This multi is a restart of something that I have tried in the past but could not take. It has allowed me to drop 22 other pills a day. I have averaged over 50 pills a day for 6 years and am tired of it all.....Anyway, since I was talking about B2 - surprisingly, I have been able to cut back to just 50 mg a day (from 300 mg) plus the 1 mg I take by injection. This may change as B2 deficiency has a tendency to sneak up on me and it can take a couple of weeks...it's been one so far.
None-the-less, I am a "dot connector" I have to create a theory for everything that happens to me. I know that probiotics help me to absorb B2 and I am not taking any right now. This makes me wonder if one of the 22 pills that I was taking was interfering with B2 absorption. I thought I read that D3 and Vit C can do this but they are both in the multi as well. And of course, it could be one of the fillers, binders, other chemicals added to supplements which by themselves may not add up to much but the amount in 22 pills could.
Anyway, we'll give it a couple of more weeks before adding a new chapter to my B2 story.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I had high lead when I started the Manganese(Mn), but do not now. I also had some other problems going on that may have made it prudent for me to start the Mn very slowly.

I was consulting a controversial nutritionist who was on this site briefly (Dog Person). She let me started with 0.5 mg Mn twice a day. She would have preferred that I had used a liquid version, which I could not get, so that I could have started with even less. I worked up to four doses/day, then gradually increased the size of the dose to 2 mg.

Manganese is need to utilize vitamins B1 and C, so the more of those you take, the more Mn you will need. The Institute of Medicine says that the safe upper limit for Mn is 11 mg.
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
I had high lead when I started the Manganese(Mn), but do not now. I also had some other problems going on that may have made it prudent for me to start the Mn very slowly.

I was consulting a controversial nutritionist who was on this site briefly (Dog Person). She let me started with 0.5 mg Mn twice a day. She would have preferred that I had used a liquid version, which I could not get, so that I could have started with even less. I worked up to four doses/day, then gradually increased the size of the dose to 2 mg
Manganese is need to utilize vitamins B1 and C, so the more of those you take, the more Mn you will need. The Institute of Medicine says that the safe upper limit for Mn is 11 mg.

Thanks for this. It coincides with my decision yesterday to half my dose of the vitamin. This would bring me back to 10 mg/day. The vitamin is good except that it has an unknown amount of NAC in it as part of the proprietary blend. I just started on carnitine as part of my experiments based on info I am learning here. Yesterday, I had an increase in energy and motivation after taking it on an empty stomach before breakfast - unfortunately there was also an increase in brain-fog. After breakfast I took my morning pills and 20 minutes later I "crashed".
I am stopping the carnitine and will experiment again next weekend lest it interfere with work. In the meantime, I will strip my morning pills down to the basics. If I can not make any progress, I will go shopping for another multi. I expect that I will have to go back onto B2 separately but won't know until I get the telltale tingling in my left jawline or the angry capillaries circling my corneas - those are my signs.
Another consideration would be that pushing the ETC outstripped my AdB12 stores. This is one of my theories on why I have never been able to tolerate Q10 or carnitine in the past.
 

howirecovered

Senior Member
Messages
167
I just started on carnitine as part of my experiments based on info I am learning here. Yesterday, I had an increase in energy and motivation after taking it on an empty stomach before breakfast - unfortunately there was also an increase in brain-fog. After breakfast I took my morning pills and 20 minutes later I "crashed".

it took me a while to adjust to carnitine - started with around 300 mg and worked up to 2000 over a couple months...
 

howirecovered

Senior Member
Messages
167
I would have started with a lower dose and not thought about any "high" or "target" dose, because you say you are mercury toxic (which causes all sorts of idiosyncratic problems) and therefore you just may not feel good with it at any dose.

My wife and I (both of us are mercury toxic) started at 1.25mg. It gave her problems at that dose (she can't tolerate most supplements) and stopped taking it, and I eventually took 40mg but it took a few months. I stopped taking it because after stopping with the molybdenum, I couldn't feel any beneficial effect from it when I tried it a few more times. It also interacts with other minerals, and sometimes its hard to figure out whats going out of balance.

it has been a couple days and so far I don't feel anything significant... I really wish my hair test showed normal mineral transport so I could use it as a guide for supplementing things like manganese!
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
howirecovered
I am going to split the carnitine into 100 mg caps and try again on the weekend. I also have my eye on ubiquinol which is next. I had a mini breakthrough when adB12 improved focus. This response tells me that I was short and if this is the case then my crash with carnitine may be because I used up all of my adB12 stores.
I have posted my experience in a couple of places and no one has responded. I think that I can take as much of this as I need without worrying about over-doing it. I think that this is part of my answer. I wonder if adB12 comes in injectable?
Man, I seem to be a bottomless pit for methylation and mitochondrial B12 support.
I have suspended all but my prescriptions and a minimal line-up of supplements = 22 pills (11 script) plus ALA on chelation days. I have not had so few pills since July 2007 and I'm lovin' it!
 

howirecovered

Senior Member
Messages
167
howirecovered
Man, I seem to be a bottomless pit for methylation and mitochondrial B12 support.
I have suspended all but my prescriptions and a minimal line-up of supplements = 22 pills (11 script) plus ALA on chelation days. I have not had so few pills since July 2007 and I'm lovin' it!

awesome Brad! i also feel like the bottomless methylation pit too and it's getting expensive...

i increased my b6 and ubiquinol another 50 mg yesterday and feel like I'm finally taking serious amounts of just about every methylation support. and looking forward to climbing further.
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
howirecovered
I forget...did you or do you use hydroxocobalamin?
I am getting used to the adB12. Sometimes I think that I am knocking on the final door that opens to clear thinking and at other times I feel as if I still have a ways to go as the fog is still "front and center". I will continue with the idea though and use the weekend to experiment with small doses of carnitine and eventually ubiquinol.
There are so many threads and ideas on this site. I find it hard to decide on what I should look at and what does not apply to me. This NO/ONOO thing is interesting. I can see now why hydroxocobalamin was given so much attention. I wonder how many people found their way to optimal wellness with it? Those with COMT variations perhaps. Hard to imagine my life without mB12 as the cornerstone of treatment.....let me revise that last statement...it is not hard to imagine as I lived that way and it was brutal.

The amazing part of this story is that my B2 problem has not raised its ugly head yet. I am taking 1 mg sc in the a.m. and 25 mg throughout the day. So far...touch wood....I'm OK. You might recall that I took 1800 mg one day to get my urine to turn yellow as my face and weiner were breaking out in rash and my eyes were filled with angry looking capillaries. 1600 the next day until I started the probiotics. And 300 mg a day for the last 1+ years with any decrease beinging back symptoms. So what gives now?????
Is it the change in the vitamin company...how the B2 is presented to the gut?
or has adB12 somehow changed my ability to absorb or utilize B2?
Amigo... does the learning curve ever level off? :)
 

howirecovered

Senior Member
Messages
167
howirecovered
I forget...did you or do you use hydroxocobalamin?
I am getting used to the adB12. Sometimes I think that I am knocking on the final door that opens to clear thinking and at other times I feel as if I still have a ways to go as the fog is still "front and center". I will continue with the idea though and use the weekend to experiment with small doses of carnitine and eventually ubiquinol.
There are so many threads and ideas on this site. I find it hard to decide on what I should look at and what does not apply to me. This NO/ONOO thing is interesting. I can see now why hydroxocobalamin was given so much attention. I wonder how many people found their way to optimal wellness with it? Those with COMT variations perhaps. Hard to imagine my life without mB12 as the cornerstone of treatment.....let me revise that last statement...it is not hard to imagine as I lived that way and it was brutal.

The amazing part of this story is that my B2 problem has not raised its ugly head yet. I am taking 1 mg sc in the a.m. and 25 mg throughout the day. So far...touch wood....I'm OK. You might recall that I took 1800 mg one day to get my urine to turn yellow as my face and weiner were breaking out in rash and my eyes were filled with angry looking capillaries. 1600 the next day until I started the probiotics. And 300 mg a day for the last 1+ years with any decrease beinging back symptoms. So what gives now?????
Is it the change in the vitamin company...how the B2 is presented to the gut?
or has adB12 somehow changed my ability to absorb or utilize B2?
Amigo... does the learning curve ever level off? :)

great to hear you are adapting to adb12. That has been my experience with every single methylation support. Always a little unpleasant at first and then side effects fade quickly. I also have come to feel like methylation might be the cornerstone for me and am taking a long break from chelation because of that - maybe 1 to 2 months. One of the reasons I'm doing this is that ALA is a methylation support and I think I can tolerate higher doses by ramping up methylation prior to chelating.

I use mb12 from source naturals and I don't know anything about NO/ONOO.

I do feel like my learning curve has slowed a lot but that's a relief because I was just glued to the FDC posts for months. Even though my learning curve is slower now, I keep learning and progressing in my recovery. Regarding why your B2 absorption has improved, I don't even try to understand too deeply as long as things are going well, lol. I still have too much brain fog (afternoons mostly) for that...
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
howirecovered
Yeah, hit another little bump in the road yesterday. I don't know if it had anything to do with adb12 or not. Really irritable - kind of nasty. Good again today (so far) and I have changed nothing so I guess I may never be able to pinpoint the cause for that. I did start round again....but rounds are virtually nothing now.....so I don't know.

Yes, learning curves. First there was the learning curve for Bipolar and I read every text I could find. Then there was my idea that all the problems started in the mitochondria and learning about Krebs and the ETC. Then there was the nutrition/gut theory - then mercury - then methylation ..... and now genetics.

If only my high school teachers could see me now!! :)
As far as the B2. I am wondering if it has something to do with energy production. I have a couple of wonky ATP SNPs and adb12 is involved in energy production. I will never know and I just accept this as "finally getting a break".
 

howirecovered

Senior Member
Messages
167
howirecovered
Yeah, hit another little bump in the road yesterday. I don't know if it had anything to do with adb12 or not. Really irritable - kind of nasty. Good again today (so far) and I have changed nothing so I guess I may never be able to pinpoint the cause for that. I did start round again....but rounds are virtually nothing now.....so I don't know.

Yes, learning curves. First there was the learning curve for Bipolar and I read every text I could find. Then there was my idea that all the problems started in the mitochondria and learning about Krebs and the ETC. Then there was the nutrition/gut theory - then mercury - then methylation ..... and now genetics.

If only my high school teachers could see me now!! :)
As far as the B2. I am wondering if it has something to do with energy production. I have a couple of wonky ATP SNPs and adb12 is involved in energy production. I will never know and I just accept this as "finally getting a break".

I also get those spells of irritability and just try to treat them like any other of the side effects. Apologize to anyone I snapped at and laugh it off... I like that 'finally getting a break' - I'm with you!!
 

howirecovered

Senior Member
Messages
167
So yes, I guess I think that it is worthwhile....but not necessary. I just bought 3 tests for sick siblings and will see if we can sort out some of the mitochondrial stuff.

hi Brad, hope you're doing well! I just got my 23andme results in and ran them through sterling's app as you suggested. Now I'm so clueless and wondering how much it cost you to have sterling consult with you... I posted my results here: http://howirecovered.com/my-genetics/

In your opinion, what's the best way to start learning what this means? maybe a post here on PR asking for help?

thanks,
Eric
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
Congrats on getting your results. We have close to the same number of "flags" but there are some distinct differences. You can get Sterling Hill to read your results - not sure if she is still away or not. She likes to skype and it costs $50. I also had Dr Tim Jackson have a look - more detail but it is a lot more money as well.

I'll email you my phone # and we can go over the SNPs that we share. brad
 

bel canto

Senior Member
Messages
246
Hi, Brad and Eric - just wondering if we could collaborate on research on some of these items from Sterling's report. I particularly am interested in finding out whatever I can about mitochondria mutations. The person I'm working with noted that my mito mutations are much more significant than my methylation mutations, and she feels like they're significant. But I'm not finding out much info. Eric, I share a lot of the NDUF7 (and 8) mutations with you. Brad, I wasn't sure if or where you might have posted any results.

It seems like it would be helpful to see if many people here have done these snp panels, and whether we share some mutations in larger than expected numbers. I would also be interested to know at what rate these occur in the general population. Maybe we could split up some of the work, or maybe there are sites that would be helpful that someone else could suggest.
 

nandixon

Senior Member
Messages
1,092
As far as the B2. I am wondering if it has something to do with energy production. I have a couple of wonky ATP SNPs and adb12 is involved in energy production. I will never know and I just accept this as "finally getting a break".

I wonder if your B2 requirements might be related to your homozygous rs1801133 MTHFR status? If so, perhaps your B2 needs would be less with additional folate. See this study, for example:

http://www.ncbi.nlm.nih.gov/pubmed/12145019/

Impaired functioning of thermolabile methylenetetrahydrofolate reductase is dependent on riboflavin status: implications for riboflavin requirements.

Authors

McNulty H, et al. Show all

Journal

Am J Clin Nutr. 2002 Aug;76(2):436-41.

Affiliation

Northern Ireland Centre for Diet and Health, University of Ulster, Coleraine, United Kingdom. h.mcnulty@ulst.ac.uk

Comment in

Am J Clin Nutr. 2002 Aug;76(2):301-2.

Abstract

BACKGROUND: Methylenetetrahydrofolate reductase (MTHFR; EC 1.7.99.5) supplies the folate needed for the metabolism of homocysteine. A reduction in MTHFR activity, as occurs in the homozygous state for the 677C-->T (so-called thermolabile) enzyme variant (TT genotype), is associated with an increase in plasma total homocysteine (tHcy).

OBJECTIVE: In vitro studies suggest that the reduced activity of thermolabile MTHFR is due to the inappropriate loss of its riboflavin cofactor. We investigated the hypothesis that MTHFR activity in the TT genotype group is particularly sensitive to riboflavin status.

DESIGN: We studied tHcy and relevant B-vitamin status by MTHFR genotype in a cross-sectional study of 286 healthy subjects aged 19-63 y (median: 27 y). The effect of riboflavin status was examined by dividing the sample into tertiles of erythrocyte glutathionine reductase activation coefficient, a functional index of riboflavin status.

RESULTS: Lower red blood cell folate (P = 0.0001) and higher tHcy (P = 0.0082) concentrations were found in the TT group than in the heterozygous (CT) or wild-type (CC) groups. However, these expected relations in the total sample were driven by the TT group with the lowest riboflavin status, whose mean tHcy concentration (18.09 micromol/L) was almost twice that of the CC or CT group. By contrast, adequate riboflavin status rendered the TT group neutral with respect to tHcy metabolism.

CONCLUSIONS: The high tHcy concentration typically associated with homozygosity for the 677C-->T variant of MTHFR occurs only with poor riboflavin status. This may have important implications for governments considering new fortification policies aimed at the prevention of diseases for which this genotype is associated with increased risk.

PMID 12145019 [PubMed - indexed for MEDLINE]

Free full text: HighWire [http://ajcn.nutrition.org/content/76/2/436.long]
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
howirecovered
I am going to split the carnitine into 100 mg caps and try again on the weekend. I also have my eye on ubiquinol which is next. I had a mini breakthrough when adB12 improved focus. This response tells me that I was short and if this is the case then my crash with carnitine may be because I used up all of my adB12 stores.
I have posted my experience in a couple of places and no one has responded. I think that I can take as much of this as I need without worrying about over-doing it. I think that this is part of my answer. I wonder if adB12 comes in injectable?
Man, I seem to be a bottomless pit for methylation and mitochondrial B12 support.
I have suspended all but my prescriptions and a minimal line-up of supplements = 22 pills (11 script) plus ALA on chelation days. I have not had so few pills since July 2007 and I'm lovin' it!

Hi Stridor,

If MeCbl is semi unstable because of light in an aqueous solution, AdoCbl breaks down in 5 days in dark and refrigerated. In countries where it is distributed for injection, it is as crystal in a vial and sterile saline is injected into the vial and mixed on the spot. There is no need. It absorbs so well from sublingual that the mitochondria can be filled in one or two doses. Then with the l-carnitine fumarate in place, MeCbl and methylfolate then, exercise then provokes the need for mitochondria proliferation and your muscles become better powered. AdoCbl doesn't get "used up" easily. It stay in the mitochondria for the mitochondrial half life which appears about 71 days. Any freely circulating AdoCbl is excreted 99% daily. It is this freely circulating AdoCbl that works on inflammation with zinc.

The LCF carries the fatty acids into the mitochondria for the KREBS cycle, generating ATP. The processed fatty acids are needed for making myelin for the nerves.
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
@bel canto
I spoke with Dr. Tim Jackson from MTHFR.support and he says that we can ignore the rest of the mitochondrial SNPs. According to him, we need to increase SOD and glutathione. As such, he recommends something called "oxicell" by Apex. This is a topical SOD/glutathione product.
I have stayed away from glutathione. Initially because it can drag mercury around and cause problems that way and later because it can lower B12. I am already toying with the idea of increasing injections to twice daily as I seem to be "jonsing" for the morning needle - feel flat and fogged.
So, it could be that some of the mitochondrial SNPs do not have nice work-arounds like MTHFR/MTR/MTRR.
Oh, and I was talking to Eric. Not sure if this site would support it but collectively we have a lot of information and I don't know why we couldn't start our own SNPedia. Probably the 200+ panel from MTHFR.support would be a good one to reference...or livewello. Cheers.
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
@nandixon
Thank-you for this. Actually, I came across a similar reference but was too fogged to understand the implications. Your submission came at a very good time....I get it now.
Yes, this would certainly have contributed to my problems. I have been able to decrease B2 again to 100 mg/day and there is enough of a change in urine colour to suggest I have a surplus. I took some of the Genestra probiotics and I thought that I really screwed up because it rocked my intestinal world. When things settled down again, I seemed to be a bit better. Since the colon was removed, gut tolerance has become the deciding factor for various interventions.
I also have lost effective adrenal function along the way and low B2 can damage them as well (as well as the level of mercury toxicity that I endured).
Thanks again for thinking about me. It is nice to have an idea validated. brad
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
@Freddd
I have shelved the ALC and now have the fumerate and am proceeding with caution. I will have quite a story to tell, if this works. Instinctively, I have been drawn to carnitine and have had 4 failed attempts to incorporate it. I have put the ubiquinol idea on hold as per your suggestion.
I am topped up on the adB12 but still take about 8 mg a day. Hopefully, there is no downside to this. An extra antinflammatory doesn't sound like a bad plan.
Also, I am toying with the idea of a late afternoon top-up of mB12 as I seem to be low in the morning. But no changes until the carnitine fumerate is sorted out.
I should reread the files....should this be taken on an empty stomach? OK with food .... or OK but have to increase dose? brad