• 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, 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.

B-12 - The Hidden Story

Messages
15
Location
New York City
So I am a CFS sufferer for almost 30 years now. I have tried everything under the sun with little effect and since discovering Methylation I finally have legitimate hope for curing this. For the past month and a half I have been on a methylation protocol as dictated through different sites but now I am switching to this exact protocol and have purchased every brand of supplement mentioned here.

Today I received the Jarrow's B12 and took one this morning. Hard to say for sure but I do think I felt some boost from it. I let it dissolve for 45 minutes as recommended then took Fish Oil/B Complex/Vit C/Vit D/COQ10/Zinc all at the same time about 30 minutes later. I felt a rush of energy then a slight phase where I was a little lightheaded but it went away. Now about 2 hours later feeling pretty good with a clear head.

MY MAIN QUESTION TO PEOPLE THAT HAVE BEEN EXPERIMENTING WITH THIS PROTOCOL

Which supplements are you taking together and WHEN? I would like to know the most effective combinations of supplements and times to take them. Can someone please let me know what exactly you are taking in the morning or afternoon or evening etc etc? Would be much appreciated!
 
Messages
15
Location
New York City
Also I'm confused about Folate vs Folinic Acid...

I read a few things that say to avoid Folinic Acid yet the Dibencozide recommended here has Folinic Acid in it. Can anybody please clarify?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@chiefrocka For me, trials of folinic never worked. Much later I discovered that the folate in vegetables, which is folinic form, blocked my Mfolate intake. I now avoid green veggies. I think MTHFR snps have more difficulties

http://mthfr.net/folic-acid-awareness-week-2014-want-awareness-here-you-go/2014/01/08/

http://mthfr.net/folic-acid-fortification-increase-in-mthfr-and-rise-in-autism/2012/05/11/
http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/

]http://forums.phoenixrising.me/index.php?threads/snps-interpretation-guide.32187/#post-497018

...And people with A1298C are inefficient at converting methylfolate back to folinic acid. It didn’t seem like that would be important, since they can convert it to methylfolate, and since they are taking the folinic, they will have plenty of that, too. In fact, that was my reasoning that led me to trial it. Here’s the rub: The problems associated with A1298C stem from a lack of BH4, which is used for a lot of things, but in particular it makes serotonin and dopamine. The important part is not how much you have, but which way the cycle turns.

BH4 and BH2 are the two forms of biopterin in the biopterin cycle. BH4 turns into BH2 when it makes serotonin and dopamine, when it converts folinic acid to methylfolate, and other things that are important. To recycle it back to BH4 takes one of two enzymes. The first is MTHFR, in the reaction that converts methylfolate to folinic acid. If you’re taking folinic acid, the MTHFR enzyme is going to be converting it to methylfolate, not the other way round, not the way you want it to be turning. It’s trying to achieve equilibrium and you’re pushing the reaction one way, when to make BH4, it needs to go the other....
 
Messages
15
Location
New York City
@chiefrocka For me, trials of folinic never worked. Much later I discovered that the folate in vegetables, which is folinic form, blocked my Mfolate intake. I now avoid green veggies. I think MTHFR snps have more difficulties

http://mthfr.net/folic-acid-awareness-week-2014-want-awareness-here-you-go/2014/01/08/

http://mthfr.net/folic-acid-fortification-increase-in-mthfr-and-rise-in-autism/2012/05/11/
http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/
Thanks for the info!

I always thought it was the goitrogens in raw greens that made me feel lethargic but now I am inclined to think it was the folinic acid in them. Any time I had a veggie shake it would make me tired and I couldn't understand it. I was once taking a green food supplement that made me feel horrible and continued to take it thinking it was a detox symptom but the symptoms never disappeared.

So I have started with a B Complex and Solgar 800mcg Methyl folate in the morning. Started today and I felt great for a few hours...had energy, was clear headed, focus felt good. Then I took a B complex in the afternoon which also contains 400 mcg of folate and I felt an energy crash about 20 minutes later. Any advice? Think it was too much folate?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
For me, excess folate leads ot anxiety, wired feeling. But it might be different for you. I proceeded in increasing my folate by 100-200mcg every day or 2. This rate worked well, and I raised my MB12 as needed, not quite a 1:1 ratio. I proceeded by self-testing, which has been a brilliant way for me to move with my supplement doses.

Jarrow B12 was downgraded by Fred several years ago, in favor of Enzymatic Therapies 1mg. But I think there have been a few people this year who've reported good results with it.

My understanding is that folate should be taken away from potassium, iron, Vit C; B should probably be taken away from oily supps; D is best in the evening. I take my fish oil w/ breakfast, CoQ, D, evening primrose oil w/ evening meal.
 
Messages
15
Location
New York City
For me, excess folate leads ot anxiety, wired feeling. But it might be different for you. I proceeded in increasing my folate by 100-200mcg every day or 2. This rate worked well, and I raised my MB12 as needed, not quite a 1:1 ratio. I proceeded by self-testing, which has been a brilliant way for me to move with my supplement doses.

Jarrow B12 was downgraded by Fred several years ago, in favor of Enzymatic Therapies 1mg. But I think there have been a few people this year who've reported good results with it.

My understanding is that folate should be taken away from potassium, iron, Vit C; B should probably be taken away from oily supps; D is best in the evening. I take my fish oil w/ breakfast, CoQ, D, evening primrose oil w/ evening meal.
Fantastic, thank you so much for the information. Lastly, are you taking the Methyl-B12 together with your B Complex? I have the Jarrows sublinguals as recommended but I noticed a little bit of a drop in energy when I took it by itself. I am going to try taking it in conjunction with folate and b complex.

Tomorrow my plan is to take a Solgar 100mg B Complex, MethylB12, Methyl Folate 800mcg and saME supplement together. I have saved the other supplements like fish oil, vit d and zinc for nighttime.
 
Messages
15
Location
New York City
I split my 25mg B complex. the first 1/2 I take early AM, w/ B12 and folate. The 2nd half B comp I take midday, w/ folate. I take my final 1/3 folate in evening, w/o any other Bs.
Great, I was thinking that I would have to break it up like that. Thanks again, really appreciated. I will report back on my results.
 

Phred

Senior Member
Messages
141
@ahmo I wrote you earlier, but I'm not sure you saw this. It's on the previous page now. I'm reposting it so sorry for the double post. :)

I was looking over some old posts and saw this one about your experiences with b12 drops and lotion. I'm quite curious how you do this.

"And my MethylB12 has also stabilized at 5mg taken transdermally. I'd been using 20mg sublingual, but now mix some liquid B12 drops w/ body lotion and apply. There's a transdermal B12 thread."

What kind of lotion do you use?

Do you mix the b12 with the lotion using a red light or in a darkened room?

Is this still working well for you?

And finally, where do you apply the lotion? Arm? Leg? Torso?

I'd really love to stop using the sublinguals and this seems like a good method.

Thanks for any info.
 
Messages
15
Location
New York City
I split my 25mg B complex. the first 1/2 I take early AM, w/ B12 and folate. The 2nd half B comp I take midday, w/ folate. I take my final 1/3 folate in evening, w/o any other Bs.

@ahmo I wrote you earlier, but I'm not sure you saw this. It's on the previous page now. I'm reposting it so sorry for the double post. :)

I was looking over some old posts and saw this one about your experiences with b12 drops and lotion. I'm quite curious how you do this.

"And my MethylB12 has also stabilized at 5mg taken transdermally. I'd been using 20mg sublingual, but now mix some liquid B12 drops w/ body lotion and apply. There's a transdermal B12 thread."

What kind of lotion do you use?

Do you mix the b12 with the lotion using a red light or in a darkened room?

Is this still working well for you?

And finally, where do you apply the lotion? Arm? Leg? Torso?

I'd really love to stop using the sublinguals and this seems like a good method.

Thanks for any info.
Hi folks, so today I started my morning with 400mcg of methyl folate, 50mg B Complex, 400mcg saME and I took half the dose of Jarrows Methyl B12 (2.5mg).

Yesterday when I took all of the same supplements mentioned EXCEPT for the Methyl B12 and my energy felt pretty good. Yet today I felt tired/wired and the only difference was the Methyl b12. I am thinking that is what caused me to feel this way. So my question is, should I stick with it or should I switch to b12 in Hydroxycolmabin form? Seems that every time I took the Methyl B12 I felt a little groggy.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
So my question is, should I stick with it or should I switch to b12 in Hydroxycolmabin form? Seems that every time I took the Methyl B12 I felt a little groggy.

I have only my experience of Hydroxy, which was useless, and Fred's understanding, that it's a poor substance, to go on. You can find his comments about it in the 2nd link in my signature.

@Phred You're right, I never saw your post.o_O I've now been using the DIY transdermal B12 for nearly 6 months. I'm really happy with it. I'm using Bluebonnet 5000mcg drops and my homemade body creme. I know Gondwanaland also had good results with whatever lotion she had on hand. Mine includes shea and cocoa butters, almond oil, some olive oil, mg oil...I don't think the ingredients are important. If I tolerated it, I'd have coconut oil in the mix. I put a fingerfull of the creme in my palm, squirt the liquid into the palm and sort of stir it around...the liquid and grease don't actually combine. Then I slap it onto arm or leg. It's absorbed within a few minutes, doesn't leave grease or stickiness. I'm sure torso would be fine. It's certainly messier than the commercial B12 oil, which is very efficient in just a tiny drop. But I'm having equally effective results. Recently I tried the remaining of my commercial B12 oil for a few days, my body finds both fine. The Bluebonnet bottle is brown. It lives on a table that is not terribly well shielded from sun, certainly not from light. I apply it early AM, so it's not very light in the room, but I don't know if that matters.:balloons:
 

Phred

Senior Member
Messages
141
Thanks @ahmo. I was asking about the light because Fred has mentioned Mb12 breaks down with light to Hydroxyb12. I might just give that a try. I can order Bluebonnet from iherb.

@chiefrocka the groggy could be so many things. You might need more folate. I'm still trying to find the balance between b12 and folate. I also find vit. d incredibly important. I'm not right if I don't get enough. Are you taking ADb12 or LCF? If I don't take LCF first thing in the morning I'm horribly fatigued.
 
Messages
15
Location
New York City
Thanks @ahmo. I was asking about the light because Fred has mentioned Mb12 breaks down with light to Hydroxyb12. I might just give that a try. I can order Bluebonnet from iherb.

@chiefrocka the groggy could be so many things. You might need more folate. I'm still trying to find the balance between b12 and folate. I also find vit. d incredibly important. I'm not right if I don't get enough. Are you taking ADb12 or LCF? If I don't take LCF first thing in the morning I'm horribly fatigued.
I just had to look up what lcf was, I held off on that. I saw that as a latter stage addition but I will purchase and try it.

Also I have adb12 but was trying to figure out the right combination for me between folate, methyl b and b complex first. I took it a few days ago in the afternoon and thought it made me tired. Can you suggest when I should try to incorporate that in to my supplement routine?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@chiefrocka Fred's most recent suggestion was to use AdB12 once a week, on a day without MB12. I've been doing this now for 6-9 months. He suggested 30-50mg. I settled on 40mg, I establish all my dosages by self-testing, which has been working great for me.
 
Messages
1
I just started the protocol few days ago with lots of supplements.

methyl b12 (5000mcg x 3times)
adeno b12 (3000mcg x 3times)
potassium gluconate (500mg x 5times)
methylfolate (800mcg x 5times)
SAMe 400mg x 1time
Jarrow b right x 2times
methionine, calcium, magnesium, zinc, vitamin d,e etc...

I definitely feel more energy but I still have an Auditory Hallucination symptom which I desperately want to eliminate.

What should I add? or How much more dosage should I try?
 
Messages
10
I'm just going to increase my folate tonight by .25mg, using 1/4 Solgar tab, because my sudden hair loss might be an indication that the B12 drops I've just started using (Bluebonnet 5000mcg) are delivering more B12 than the California Extract drops that I'd used before, putting me into folate deficiency.

I knew that excess folate could mask B12 deficiency, but this is the first I've read that excess B12 can put you into folate deficiency. I was thinking it was okay to just take B12 without folate.

I'm in a weird situation because I developed peripheral neuropathy in April that has progressed. A stocking-glove pattern. I was taking Yasko supplements at the time, which contain all 3 types of folate, and both types of B12. I ran B12 and folate blood tests. Serum B12 was 800+. MMA and Hcy were nice and low. Serum folate was 400+ (really high, out of range), and RBC folate was mid-range healthy. So there are no indications of B12 or folate deficiency in blood tests. But I still wonder if there's some problem there. I've been keeping off the folate and just taking B12 for a while, to try to remedy the peripheral neuropathy. I've just been eating lots of leafy greens, which should be okay for me (I'm A1298C hetero). But should we also supplement methylfolate ALWAYS, when taking B12?

ahmo, I do hope you are able to figure out the hair loss soon!
 
Messages
10
Is it okay to try Freddd's protocol without any B6, do you think? My primary care doc suspects B6 toxicity as a possible cause of my peripheral neuropathy due to a blood test that showed out-of-range high plasma B6 level, and so she's having me avoid all supplemental B6 for now.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
So there are no indications of B12 or folate deficiency in blood tests
My blood tests showed little indication of deficiencies. That's why I generally have given up on pathology testing. I've continued on successfully by tracking and treating symptoms, using self-testing (like muscle testing) to ask my body re dosages.

've just been eating lots of leafy greens, which should be okay for me (I'm A1298C hetero). But should we also supplement methylfolate ALWAYS, when taking B12?
To be honest, I can't answer that question. They work together. I still have a poor working understanding of folate, which is why I included a section in the Freddd's Protocol I posted, About Folate. (2nd entry in my signature) I think the answer may be that for 'normal' people, no problem, but w/ MTHFR issues, we need both. You can also see what Ben Lynch, MTHFR expert has to say about this at mthfr.net. You can use his search feature, and there are many informative responses in the comments sections.

I'm also hetero MTHFR, but for both A1298 and C677. I found that eating green vegetables, with their folinic form of folate, blocks my Mfolate. I no longer eat green veggies, except in tiny amounts to add in some soil bacteria from my parsley.

Is it okay to try Freddd's protocol without any B6
At some point, you'll probably need small amounts of the other Bs, most likely. I've settled on the Swansons activated B Complex.

I got on top of my hair loss. I worked out that my needs have decreased for B12 after 2 interventions, adding FMN form of B2, and 3-day water fast. I'm currently down to 3mg MB12, 2mg Mfolate taken sublingually.:)
 
Messages
10
I've continued on successfully by tracking and treating symptoms, using self-testing (like muscle testing) to ask my body re dosages.

I got on top of my hair loss. I worked out that my needs have decreased for B12 after 2 interventions, adding FMN form of B2, and 3-day water fast. I'm currently down to 3mg MB12, 2mg Mfolate taken sublingually.:)

Thank you, ahmo!

Is muscle testing difficult to learn? Do you find it reliable?

Was excess B12 causing the hair loss, then?