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B-12 - The Hidden Story

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for your reply, Freddd. And sorry about the mysterious acronyms; I learned them on this forum. OI = orthostatic intolerance; PEM = post-exertion malaise (kind of a dumb term, as has been discussed on other threads, but for now it's what we've got).

Here's what I'm currently taking:

first thing, on an empty stomach (per your recommendation before):

Solgar methylfolate 3200 mg
acetyl-l-carnitine 500 mg (I used this originally; switched to l-carnitine fumarate for about a month, but it didn't seem to make an appreciable difference, so I switched back)
Jarrow sublingual mb12 4 mg
Country Life sublingual adb12 3 mg
(and right now, I'm experimenting with adding nattozimes to this section, with hopes that it might do my circulation some good).
The sublinguals usually last about 1.5 hours or more.


second thing, with food (the food is usually homemade kefir; lately I've been adding d-ribose, agave syrup, a hint of salt, cinnamon, ginger, and something called Vivix, which has extracts of muscadine grape, elderberry, purple carrot, and polygonatum cuspidatum. Resveratrol content 100mg)

vitamin C 2,000 mg
vitamin E 400 IU
B-Right capsule
potassium 99 mg
zinc 50 mg
fish oil 1,000 mg
krill oil 500 mg
vitamin D3 5,000 IU + 400IU in my vitamin A
vitamin A 10,000 IU
magnesium complex 400 mg (350 mg magnesium oxide, 40 mg magnesium citrate, 10 mg magnesium aspartate)
ubiquinol 300 mg
alpha lipoic acid 300 mg
Drenamin (Standard Process adrenal support; no hormones in it, just organic adrenal extract)

until I ran out recently, I was also taking a cal-mag supplement. Besides my daily pint of kefir, I drink raw milk pretty copiously, and eat cheese and ice cream, so I worry less about calcium intake. I admit this is not scientific, just based on the fact that I eat a lot of dairy. (And yes, I have given dairy up and no, it didn't make an appreciable difference.)

I also took selenium for a few months. When I ran out, I didn't notice it, so I left it out. I may add it again. After all, taking pills is already a part-time job for me.


later in the day, with food:

B-Right capsule
krill oil 500 mg
fish oil 1000 mg
ubiquinol 300 mg


at night, for the last few days I've been taking Dr. Lazlo's Heavy Metal Shield, supposed to be a mild form of detox for heavy metals.

I also am on a course of acupuncture (I go on and off, for financial reasons) and taking some Chinese herbs. My acupuncturist did have me on glutamine last fall for a few weeks. That was just before I discovered your protocol, so when I read your adventures, I quit the glutamine. I also took some NAC for a month or so about two years ago. I do have an especially rough time when I add more folate, so it may be that more is required. If I added it, would it be much worse to do 2 at a time than it is to do one? Knocked me back for about 2 weeks each time I upped the dosage 800 mg. The discouraging thing is that I don't necessarily feel improved (I mean, past what I was before upping the dosage) after the two weeks are up.

3 mg of adb12 seemed like a pretty high dose compared to what others take, which is why I thought a more direct approach to ATP might help. The ubiquinol seems to be making a difference, but I started with much smaller doses and have only been doing the more therapeutic 600mg for about a week.

I'm not sure how long I can keep up buying all this stuff. I would love to eliminate some things, because I just can't afford hundreds of dollars a month. I've been going on the premise that it would get me well enough to work and earn the money, but that isn't happening.

Any thoughts that might lead me to a winning combination would be greatly appreciated. I am pleased at my improvement in brain function with the B12, augmented I think by ubiquinol and acupuncture; my brain's back at about 60-70%. But my energy level remains at around 20%, more or less. And of course when my energy goes, my brain goes too; this post may be a testament to that...

Hi Sunday,

I have read some most interesting aricles on Agave syrup which I did not save a linkage too. It was in the New York Times I beleive. Google "high fructose" and "agave". You willl find that generally agave is higher fructose than corn syrup with all the evils associated thereby.'


3mg of Adnosylb12 sublingual amounts to a dose of about 450-750mcg into serum which is not a high dose particularly.

Regarding the Metafolin, I and others have found that it is more effective as a single tablet multiple times per day. Metafolin has a serum halflife of about 3 hours. Multiple doses maintains a higher average serum level but a lower peak and a higher trough.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Sunday,

Hi Freddd,

I've recently tried posting over on the aboutmecfs forum and am not allowed to post - not sure why, I've sent an email to the admin's. Would you mind copying this to Sunday?

I wanted to reply to Sunday's question about potential roadblocks - not sure if this can help her or not, but I continue to take ~5g of carnitine a day (kind does not make a difference for me) in order to have sustained energy.

I've lowered the carnitine on several different occasions and always, over time, the fatigue creeps back in. It's scary how it happens unnoticed - all of I sudden I'll realize I dread walking up the stairs, or vaccuuming or something, and it is completely due to lack of energy - adjusting the dose back up to 5 g per day quickly turns this around for me.

Also, I think she commented that taking 3 adb12 per day was more than most. I continue to take 5 adB12 per day in order to remain brain fog free - I have also tried decreasing this on occasion, but without success.

I saw she was worried about the cost, my supplements are expensive, but I am back to work and making money to pay for them. I hope she doesn't give up prior to trying increased doses of various things.

I remember there was a period where I didn't try the adB12 more aggressively since you had found once a week was fine - I did not notice any new startup even after 2 weeks without adB12 and yet I benefited from additional amounts.

For me it does something additional and seems to help clear out whatever brain fog inducing chemicals are getting through my digestive system - when I first started the adB12 it became clear that the brainfog was happening after eating, eventually (after treating dysbiosis), the brainfog has lessened that it mostly never returns (barring eating some offending foods that really seem to encourage it) as long as I continue the adB12.

Another issue I had - due to very poor digestions and malabsorbtion - was the need to take amino acid supplements. Once I started these, it took about a month+ and I started to notice increased hair and nail growth. Thus, I have a feeling the lack of or low amino acids where holding me back from healing. Amino acids are essential to making all proteins, including enzymes, and thus to keeping things running...

Velha
 

Sunday

Senior Member
Messages
733
Thank you both, Freddd and Velha, for your very useful suggestions. I'll try adapting my protocol, and report back. I really appreciate the help; sometimes it feels very complicated figuring out what works.
 

soulfeast

Senior Member
Messages
420
Location
Virginia, US
I was up to 7 mg MB12. Also on olive leaf extract. had a really hard die off or detox with fever and tachy, so backed off the MB12 and OLE. Back on 5 mg a day MB12 (half this and half the adenyl and take all b12s throughout the day) and even higher dose of OLE.. 18% strength and 1000mg twice a day. ?? I am also taking hydroxy and adenyl. 3-5 perque hydroxy a day and about 4.3 adenyl a day (source naturals). I added transdermal glut when I started the hydroxy. Added the MB12 back in after that. I would have creepies that drive me insane start back up and 1 mg MB12 and or the glut took care of it, so I keep both in. I seem to be doing pretty well, except for a major issue with sinuses, ear, jaw which I am guessing is related to the OLE. I THINK as long as I have continual supply of b12 (HB12 or MB12) I am seeing some progress (knock on wood) but I think I need the glut esp with the HB12 and possibly did with the MB12.. I am using Lee Silsby trandermal glut. I like the fact that the amount can be adjusted.
 
Messages
18
need help

I'm looking for solutions to my awful bouts of depression and anxiety. I avoided b12 and folic acid supplements in the past because I read that high histamine types should do so. Ive used the aminos tryptophan and tyrosine with some benefit. My depression and anxiety have been cyclical for several years now. Everything took a turn for the worse about 6 weeks ago. I fell into a deep, dark emotional hole which I'm struggling to get out of. The emotional issues are eating me up and I am sinking. I lost 10 pounds and Im having trouble with waking issues (with anxiety) at night. A couple of weeks ago, I reconsidered the b12 issue. I picked up some methyl-b12 (Source Naturals) from the vitamin store. My sleep has improved somewhat but my emotions are on a rollercoaster ride. I wept at lunch yesterday. I was thinking of stopping the b12 when I came across this board. I was relieved by the information on startup issues. I think thats what I may be going through. Im also taking Mega-Folinic. After reading about the 5-star b12 products, I switched to Jarrow methyl-b12 yesterday. Ive had a very difficult morning. I need guidancedesperate

joseph
 

dmholmes

Senior Member
Messages
350
Location
Houston
I'm looking for solutions to my awful bouts of depression and anxiety. I avoided b12 and folic acid supplements in the past because I read that high histamine types should do so. Ive used the aminos tryptophan and tyrosine with some benefit. My depression and anxiety have been cyclical for several years now. Everything took a turn for the worse about 6 weeks ago. I fell into a deep, dark emotional hole which I'm struggling to get out of. The emotional issues are eating me up and I am sinking. I lost 10 pounds and Im having trouble with waking issues (with anxiety) at night. A couple of weeks ago, I reconsidered the b12 issue. I picked up some methyl-b12 (Source Naturals) from the vitamin store. My sleep has improved somewhat but my emotions are on a rollercoaster ride. I wept at lunch yesterday. I was thinking of stopping the b12 when I came across this board. I was relieved by the information on startup issues. I think thats what I may be going through. Im also taking Mega-Folinic. After reading about the 5-star b12 products, I switched to Jarrow methyl-b12 yesterday. Ive had a very difficult morning. I need guidancedesperate

joseph

Joseph, very sorry to hear what you are going through. I too have a long history of anxiety, and times of depression.

You'll get some good advice on B12 here, I wanted to suggest something also. Magnesium has had a greater impact on me than anything else in the active B12 protocol. Taking a good magnesium made a very noticeable difference in a couple of days, I was obviously deficient though not tested yet. There is good info here, and in the book The Magnesium Miracle which has a chapter on anxiety and depression. It also covers testing, magnesium in foods, and right kind of supplements.

Take care,
David
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I'm looking for solutions to my awful bouts of depression and anxiety. I avoided b12 and folic acid supplements in the past because I read that high histamine types should do so. Ive used the aminos tryptophan and tyrosine with some benefit. My depression and anxiety have been cyclical for several years now. Everything took a turn for the worse about 6 weeks ago. I fell into a deep, dark emotional hole which I'm struggling to get out of. The emotional issues are eating me up and I am sinking. I lost 10 pounds and Im having trouble with waking issues (with anxiety) at night. A couple of weeks ago, I reconsidered the b12 issue. I picked up some methyl-b12 (Source Naturals) from the vitamin store. My sleep has improved somewhat but my emotions are on a rollercoaster ride. I wept at lunch yesterday. I was thinking of stopping the b12 when I came across this board. I was relieved by the information on startup issues. I think thats what I may be going through. Im also taking Mega-Folinic. After reading about the 5-star b12 products, I switched to Jarrow methyl-b12 yesterday. Ive had a very difficult morning. I need guidancedesperate

joseph

Hi Joseph,

I had depression for decades as a result of b12 deficiency. It cleared rapidly after starting the methylb12. I was already taking all the basics, everything except an active folate as it wasn't avaialble. The basics, including magnesium, are very important becasue they provide a foundation on which the b12 builds. Getting started on mb12 is a roller coaster since literraaly hunbdreds of things can stall becasue of deficiency and then all try to start up at once. Often symptoms are gone through backwards and with intensification. A deficiency of mb12 AND foLate can cause much hyper-responsiveness and histamine increase. I can take a while for things to settle down, usually within a few months, often quicker. Volitile emotions is one of the effects of things improving, healing. The things that hit hard on startup are often the first things corrected.
 
Messages
18
David,
Thank you for the kind reply. I currently take magnesium morning and afternoon along with other supplements. I'm glad to hear that it's helped! How much do you need to take for your situation? Thanks for the links
joseph
 
Messages
18
need help

Hi Joseph,

I had depression for decades as a result of b12 deficiency. It cleared rapidly after starting the methylb12. I was already taking all the basics, everything except an active folate as it wasn't avaialble. The basics, including magnesium, are very important becasue they provide a foundation on which the b12 builds. Getting started on mb12 is a roller coaster since literraaly hunbdreds of things can stall becasue of deficiency and then all try to start up at once. Often symptoms are gone through backwards and with intensification. A deficiency of mb12 AND foLate can cause much hyper-responsiveness and histamine increase. I can take a while for things to settle down, usually within a few months, often quicker. Volitile emotions is one of the effects of things improving, healing. The things that hit hard on startup are often the first things corrected.

Your reply was very helpful Freddd thank you! Its given me some hope. Based on what youre saying, these volatile emotions are a good sign - I need to hold on to that perspective during this chaos. I appreciate you putting things in context and explaining the reason for the roller coaster experience. I hope the last thing you said is true of my situation. Its good to hear of your success with methyl-b12!

I have a few questions:
1. How should I dose the b12 / active folate? Are there guidelines on dosages and when to take?
2. What basics need to be added? I take the following supplements: multi-vitamin, b-complex 100, magnesium, calcium, vit c, vit d3, zinc, b6, EPA/DHA (fish oil), iodoral, and some aminos. Sometimes add DHEA and pregnenolone
3. Is there something that can be done to make the startup reactions less intense?

I noticed that my emotions started to calm down this afternoon when I got a warm feeling in my feet and ankles. I remember similar occurrences right after I became ill a few years ago. At that time I wasnt using b12. Not sure what this meansits puzzling to me

joseph
 
Messages
18
day after...

Im still reeling from yesterdays emotional episode (this was on 7 mg of the methyl-b12). Would it be wise to take a b12 break until the chaos dies down? Or, should I back down to a smaller dose like 1-2 mg? I havent taken any so far today as I fear a repeat performance. How much active folate should be taken in relation to the b12? need help...

joseph
 

winston

Senior Member
Messages
102
Location
Central California
Hi Joseph, I've been doing the B12 protocol since last December, I quit 3 times because I had difficulty with the start-up which included anxiety and depression. I had to start much slower than what you have started with. I took a 1 mg of Jarrow Methly B-12 and cut it into 1/4 and gradually increased it every 3 days. I also needed to take Xanax to help with the severe anxiety. I hope you are following Freddd's protocol exactly taking all the recommended supplements and the Jarrow Methyl B-12, Jarrow B-Right, Solgar Folate, Country Life Dibencozide all ordered from i-Herb. I have just started refining the protocol by starting with the critical cofactors. I tried the l-carnitine fumurate 500 mg and all my symptoms started returning especially depression and that creepy anxiety. So I took a 500mg capsule and opened it and made the powder into 8 parts and took one bitter part and swallowed it. The first day I could feel the anxiety and depression come and go but the next day it was gone and the third day I felt pretty good. Each week I plan to increase the dosage until I can take the whole 500mg. In six months I am 70% better and am striving to get into the 90% improvement. It is pretty amazing what these vitamins can do. Six months ago I could not drive myself to the Dr. 40 minutes away to get my prescription of Xanax, this month I took two trips by myself to help my daughter with her new baby in San Diego which is 5 1/2 hours away. Today I only use Xanax to help sleep and when starting another new supplement. I am very excited about my progress and I would recommend that you take it slower, you will get there.

Lena
 

bigdreams87

Senior Member
Messages
102
Hello all.

I was going to try the methylation block lift per Rich Van K. I went out to try and find hydroxy at the store but they did not have it. Instead I picked up methylb12 and adenob12. I thought "what the hell, I will give this a try." So I have. So far I have taken 3 5g tablets to date and have no start up reaction or bad reaction. Is this a good sign?

Thanks,
Rob
 

dmholmes

Senior Member
Messages
350
Location
Houston
David,
Thank you for the kind reply. I currently take magnesium morning and afternoon along with other supplements. I'm glad to hear that it's helped! How much do you need to take for your situation? Thanks for the links
joseph

Hi Joseph, I'm currently taking 500mg a day of magnesium glycinate. Last year I tried a couple of different forms that didn't have any noticeable effect. Even just 50mg of a good form had a very noticeable effect on my orthostatic intolerance.
 

Sunday

Senior Member
Messages
733
Hm, interesting David, I just started taking a magnesium with three forms of magnesium in it, and my OI seems (knock wood) to be settling down. However, I've been fiddling with my protocol a lot, adding and upping things, plus acupuncture, so too many variables really to say.

Joseph, what Lena said. I have longstanding issues with depression and anxiety also. I was interested to find out, when I started researching this protocol, that B12 is now an official drug for depression. Sometimes I wonder if depression is part of what has made me treat myself so roughly in a lot of ways. You didn't know it, but starting out with a megadose is treating yourself roughly. It really helps to have the basics that support the active B12s, and it can also help to start up the supplements one at a time, in small doses at first as Lena described.

Lena, you sound like a different person than 6 months ago, I'm so thrilled you are doing so much better. I do seem to be doing a better altering my protocol as suggested (and ubiquinol seems to be a key player for me). I'll look forward to getting to your level. Glad you're having fun in life! and I really admire you for sticking with the protocol even though it gave you such a hard time. And working out a way to ease through it that makes it possible for you. It's inspiring to hear.

Rob, I'm sure Freddd will explain this much better, but there are a few possible reasons why you didn't react. One is, some people just don't have the reaction. It may mean you're not deficient, but it doesn't have to (and if you have anything neuro going on, chances are, you are deficient). The second thing is the brand. Even brands that are really good for other things may not have active B12 formulas that work. The two brands Freddd recommends (he did some research) are Jarrow and Enzymatic Therapy. Other brands may not work at all, or work poorly. A third question would be, how long are you leaving them in your mouth? The quicker they dissolve, the less dose you get. If you are just swallowing the pill, you will get zilch. I'm sure there are more twists to this that Freddd and others will elucidate.
 

bigdreams87

Senior Member
Messages
102
I felt very wired last night when I took it - could not fall asleep. My urine today was also clear - I don't know if this means anything. A year ago I had terrible reactions to the MB12. I am also significantly better than I was a year ago, so maybe I am able to process it a bit better.

I will keep trying it for a week and see what happens!
 
Messages
18
RE: day after...

Hi Joseph, I've been doing the B12 protocol since last December, I quit 3 times because I had difficulty with the start-up which included anxiety and depression. I had to start much slower than what you have started with. I took a 1 mg of Jarrow Methly B-12 and cut it into 1/4 and gradually increased it every 3 days. I also needed to take Xanax to help with the severe anxiety. I hope you are following Freddd's protocol exactly taking all the recommended supplements and the Jarrow Methyl B-12, Jarrow B-Right, Solgar Folate, Country Life Dibencozide all ordered from i-Herb. I have just started refining the protocol by starting with the critical cofactors. I tried the l-carnitine fumurate 500 mg and all my symptoms started returning especially depression and that creepy anxiety. So I took a 500mg capsule and opened it and made the powder into 8 parts and took one bitter part and swallowed it. The first day I could feel the anxiety and depression come and go but the next day it was gone and the third day I felt pretty good. Each week I plan to increase the dosage until I can take the whole 500mg. In six months I am 70% better and am striving to get into the 90% improvement. It is pretty amazing what these vitamins can do. Six months ago I could not drive myself to the Dr. 40 minutes away to get my prescription of Xanax, this month I took two trips by myself to help my daughter with her new baby in San Diego which is 5 1/2 hours away. Today I only use Xanax to help sleep and when starting another new supplement. I am very excited about my progress and I would recommend that you take it slower, you will get there.

Lena

Hi Lena, thank you for the helpful information! Sorry to hear of your start-up troubles. Your progress on the program is encouraging. If it wasn't for this board, I would've quit the b12 already. Thanks for the advice on taking it slower. I started pill splitting yesterday. I picked up some Country Life Dibencozide and Solgar Folate last night. Took partials of each before going to bed. I couldn't find Jarrow B-Right need to order through iHerb. Spent some more time reading in this thread. Is the second post considered the 'protocol'? How critical is taking potassium in supplement form? I eat lots of bananas. I already take most of the basics (zinc, d, c, ) but have no clue as to the critical co-factors like SAM-e, TMG, L-carnitine, etc. - guess these can be added at a later time? I've started all the 'Absolutely critical minimums' except for B-right and potassium. I appreciate the advice to take it slower. It's what I needed to hear. Yesterday went much better than Thursday

joseph
 
Messages
18
Joseph, what Lena said. I have longstanding issues with depression and anxiety also. I was interested to find out, when I started researching this protocol, that B12 is now an official drug for depression. Sometimes I wonder if depression is part of what has made me treat myself so roughly in a lot of ways. You didn't know it, but starting out with a megadose is treating yourself roughly. It really helps to have the basics that support the active B12s, and it can also help to start up the supplements one at a time, in small doses at first as Lena described.

Thanks for the note Sunday! Yes, I went over-the-top and started out much too high! School of hard knocks. I backed off yesterday using partial pills. I'll ramp up the doses as my body adjusts. You're right...I did treat myself roughly! I was desperate for relief but ended causing myself more trouble. Thank you for the timely advice to go slow, using smaller doses, adding one supplement at a time

joseph
 
Messages
18
magnesium

Hi Joseph, I'm currently taking 500mg a day of magnesium glycinate. Last year I tried a couple of different forms that didn't have any noticeable effect. Even just 50mg of a good form had a very noticeable effect on my orthostatic intolerance.

thanks David. I've been using 400mg/day of magnesium (mag glycinate chelate / mag aspartate). I may need to add a little more. Glad this is working for you...

joseph
 
Messages
18
B12 deficiency confined to the brain

Found an article that mentions a B12 deficiency that is confined to the brain. Has anyone come across this before? I'd be interested to hear your thoughts --joseph

http://www.mts.net/~baumel/B12.html

"There is an intriguing reason why some people with normal blood levels of B12 may need megadoses of the vitamin. They may have a B12 deficiency that is confined to the brain.

While most doctors would never consider such a possibility, studies have documented local cerebral deficiencies of B12 (using cerebrospinal fluid levels as a measure) in people with Alzheimer's disease, postpartum depression, and toxic neuropsychiatric disorders, including toxic depression."
 

Sunday

Senior Member
Messages
733
Joseph, I just wanted to mention that potassium could potentially be very important. I can't remember where on this thread Freddd describes it, but sometimes reactions to the B12s lead to - could it be hyperkalemia? anyway, a potentially life-threatening thing. Potassium is cheap and usually doesn't create reactions; I'd highly recommend you take the supplements at least while you're going through the initial process.

I generally tell people that the first 3 pages of this thread will give you the basics of the protocol, then you can ask questions at the end. I read those first three pages over and over, since I had bad brain fog.

It's amazing what's out there about B12s, isn't it? According to Rich and Freddd, blood levels are a useless measurement for people with CFS/ME/Lyme's; it's the CSF measurement that counts. And apparently, that goes for a lot of other neuro diseases, too. I always find it kind of exciting when you hit overlap and commonalities. It seems hopeful for finding out how it works, or at least how to mitigate what it does to us.