• 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

paul80

Senior Member
Messages
298
Paul-
Only 200! I take 3000. I think we should be getting 4800 through diet but not sure on the number. I thought going over 1000 was a bit much because of the number of pills it takes to get to 1000. It seemed excessive. I could not believe the things that would go away with potassium. See my post on my process going through the protocol:

http://forums.phoenixrising.me/index.php?threads/methylation-protocols-and-gains.16106/


Also, Potassium has a 24 hour effect and an immediate effect (at least for me). So my friend, bump it up and take it through out the day. I take it 500 every 3-4 hours.

Best of luck, Place

Hi Place, i'm glad your doing good now. :)

I might try and experiment with more potassium. Does anyone know if too much potassium could be detrimental in some way?
 

freshveggies

Senior Member
Messages
196
HI, I noticed that my methylfolate was wearing off before bed as I noticed some dizziness and lightheadedness. I did not take any as I do not know if that would be a problem taking before bed with my sleep issues. I woke up this am quite dizzy and took 2 --total 1600mcg. at 7:40. It is now 9:30 and I am still dizzy. I started on this all on Sat and the immediate affects I noticed on methylfolate was that my dizziness went away. Did I take enough methylfolate? Should I take more? I also took 1500mg potassium because I am so constipated that I thought I should just get mroe in me. It appears I only get 1000mg though food. I have been very low on veges and eat meat and oil. I know I need to probably add in somthing else. I did eat some sweet potato with my breafast. I gain weight just by looking at carbs.

I did add more IV magnesium last night. This could possible cause me to need more methylfolate?
would I need more m12? I don't have my ET brand yet to add in another m12. That is the plan when I get it.

I am going to copy this to my thread. Maybe I should keep my posts together so we can follow how I am doing.

thanks
 
Messages
5
Location
Virginia
Hi Place, i'm glad your doing good now. :)

I might try and experiment with more potassium. Does anyone know if too much potassium could be detrimental in some way?

Paul: It takes a LOT of potassium to be harmful --I think the RDA is something like 4000 mg, meaning it would take about 40 of your 99 mg-per-tablet potassium pills even to reach your recommended daily dose, much less exceed it. That said, potassium in VERY high concentrations can possibly cause internal tissue damage, and in EXTREMELY high doses it can cause heart arrhythmias. Neither is a likely consequence of taking as many potassium caps as necessary, episodically, to prevent or mitigate muscle spasms and cramping. Magnesium taken w/ potassium helps with those symptoms too.
 
Messages
19
Location
Taiwan
  • They don’t take BOTH active b12s.
I have re-read your post a number of times and I do apologize if I missed it but what other than the Methyl b12 do we need?

Currently I am taking

  • Solgar 800mcg as metafolin (In mouth upper lip for 45 minutes)
  • Jarrow Methyl b-12 5000mcg (In mouth upper lip for 45 minutes)
  • Enzymatic Therapies - B12 Infusion (In mouth upper lip for 45 minutes)
How many times a day am I supposed to be taking these? I understand I need to get some potassium which I will purchase today.

Your response is greatly appreciated, thank you!
 
Messages
64
I have re-read your post a number of times and I do apologize if I missed it but what other than the Methyl b12 do we need?

Currently I am taking

  • Solgar 800mcg as metafolin (In mouth upper lip for 45 minutes)
  • Jarrow Methyl b-12 5000mcg (In mouth upper lip for 45 minutes)
  • Enzymatic Therapies - B12 Infusion (In mouth upper lip for 45 minutes)
How many times a day am I supposed to be taking these? I understand I need to get some potassium which I will purchase today.


Your response is greatly appreciated, thank you!

Hi Mindglow,

The information for Fred's protocol is spread over several threads and is a bit diffucult to find. However, I think it would be helpful for you to read the 2 short threads with some basic info. Please see the links below. Good luck.

http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

http://forums.phoenixrising.me/inde...tocol-with-micro-titration.17818/#post-273588
 
Messages
19
Location
Taiwan
Thank you but it still doesnt actually say how much of each of the following to take daily unfortunately :(

  • Solgar 800mcg as metafolin (In mouth upper lip for 45 minutes)
  • Jarrow Methyl b-12 5000mcg (In mouth upper lip for 45 minutes)
  • Enzymatic Therapies - B12 Infusion (In mouth upper lip for 45 minutes)
Other than Methlycobolamin which is the other b12 I am supposed to be taking? Confused...
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
Mindglow,
The other active cobalamin is adenosylcobalamin. Methylcobalamin targets the nervous system. Adenosylcobalamin is used by the mitochondria to produce ATP, the body's energy molecule. Methylcobalamin will convert to adenosylcobalamin in healthy people, but that conversion doesn't always work well in unhealthy people. Methylcobalamin turns over rapidly in the body. Adenosylcobalamin is protected from many of the body's stressors in its sheltered position in the mitochondria, so doesn't need to replaced as often.

There's no standard protocol for this. Everyone's reactions are different, so dosages may vary. Reading the links cureminded gave will help you understand how to arrive at your own dosage levels.
 
Messages
19
Location
Taiwan
Mindglow,
The other active cobalamin is adenosylcobalamin. Methylcobalamin targets the nervous system. Adenosylcobalamin is used by the mitochondria to produce ATP, the body's energy molecule. Methylcobalamin will convert to adenosylcobalamin in healthy people, but that conversion doesn't always work well in unhealthy people. Methylcobalamin turns over rapidly in the body. Adenosylcobalamin is protected from many of the body's stressors in its sheltered position in the mitochondria, so doesn't need to replaced as often.

There's no standard protocol for this. Everyone's reactions are different, so dosages may vary. Reading the links cureminded gave will help you understand how to arrive at your own dosage levels.


Thank you so much for explaining this. Is it possible to buy active cobalamin adenosylcobalamin at the iherb.com store and if so, which is generally recommended as the one that actually works. thank you
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
Yes, iHerb does carry adenosylcobalamin. There are 3 brands. Country LIfe sells it as dibencozide. This was the brand recommended early on, but it does have folic acid in it, which will competitively inhibit absorption of active folate, so it wouldn't be my pick. The next brand is Source Naturals Dibencozide 8.6 mg. This is the one I take. The next brand is Anabol Naturals Dibencoplex. One poster here likes that brand best of all; I think Freddd is testing it out. I don't believe he's posted his final opinion on it yet.

Because adenosylcobalamin hangs around longer, it's possible to just take it once a week. Not everyone needs to take it. Another personal variation thing.
 

Victronix

Senior Member
Messages
418
Location
California
Hi,
I'm wondering if anyone else has noticed a degraded quality to the Jarrow Methyl B-12s that are now in plastic bottles -- they used to be in glass, but now almost all the bottles are plastic. I noticed as soon as I opened them that the color was more pink (on the 1000's they are usually almost white in color), suggesting moisture exposure, apparently, and degradation. They are about 1/2 as effective as the others. At first I thought I'd gotten a bad batch, but now every other bottle is like this.

Anyone else have this experience?

Thanks,
Vic
 
Messages
40
Location
Wausau, WI
Okay, just getting started, and a bit overwhelmed and confused with what to order... This is what I've pieced together; I'd love to know for certain if there are specific brands recommended, or if there are any I am missing or don't need. Also, do I start with all listed, or add them one at a time, each day? Thanks!

- A
- B Complex with Metafolin (either Douglas or Pure)
- C
- D
- E
- Calcium/Magnesium
- Zinc
- Selenium
- Chromium GTF
- Omega 3's
- Lechitin
- Potassium
- Ensymatic Therapy - 1 mg - B12 Infusion
- Dibencozide
 
Messages
40
Location
Wausau, WI
Also, just to clarify, we are to take both the B12 Infusion AND the B Complex, correct?

And if anyone has insight on brands of each that work well for those of us that are hypersensitive, I'd love to know which to look for. I'm nervous getting these without more specific info., because I react to many additives, preservatives, etc. in different supplements I've tried.

Thanks again!
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
Tara,
I have a recommendation for you, so I'm glad to see your post here, so I could reply to you. If you haven't seen it yet, I recommend watching Rich van Konynenburg's presentation at the Swedish IAOMT about his theory of glutathione depletion-methylation cycle block. It's a lot easier to listen to a talk about it instead of reading, although it is 1 hr 20 min. for Part 1, and there are 3 parts.
http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}#

I would look at the Active B12 Protocol Basics thread for Freddd's most current recommendations, and Simplified Methylation Protocol Revised As Of Today thread for Rich's most current recommendations. They're both pinned at the top of http://forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/.

Freddd also has a Hypersensitivity Identified thread at http://forums.phoenixrising.me/index.php?threads/hypersensitivity-identified.16104/.
 
Messages
40
Location
Wausau, WI
Thanks for the links, Lynn. I watched most of Rich's presentation a few weeks ago, and am going to rewatch it to see what more I can absorb and digest from it at this point in time too.

I had also printed off the Active B12 Protocol (that's what I'm trying to piece together for getting the initial supplements), and I've read through Rich's Methylation Protocol as well. I guess it's a matter of trying to keep up with all the updates and posts each day/week. I really wish there was a page or forum for Freddd and Rich alone to post their documents and protocols, as well as updates, so we didn't have to sift through all these posts trying to figure out the best and latest of everything.

Thanks too for the Hypersensitivity thread. I read through that this morning, and found that I stronly relate to the neurological and psychological reactions spoken of. I guess I'm finding words and explanations behind what I've been experiencing -- it's a bit scary. I definitely think I may fall into the hypersensitive category with some of my impending reactions, so I'm trying to be 'pre-active' with getting the right supplements to avoid what potential reactions I may have from the start.

Have you found any brands that work well for you or your friend, or a source to get most of them from? And did my above list look about right to you?
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
Tara,
Your list looks okay. You definitely don't want to start everything all at the same time, especially with your reactivity. I would start with the mB12, add methylfolate a week later. After 3 days you could start adding other stuff, but allow a few days between each new supplement. If you have a problem, you want to be able to identify which supplement caused the problem.

Finding the right dosing introduces another entire set of variables, because it's not just the ingredients of a particular supplement but also the dose that can cause problems. And not having enough of something can also cause problems. So it's all individual as to what works for each person, and vexing trying to figure it out.

I'm the opposite of you. I never react to anything, and nothing I eat or take seems to make much difference except my Nature-throid dose. I don't have CFS, and I don't feel bad, just low energy. But in March, when I found out I was homo A1298C, I started taking methylcobalamin according to Freddd's under the lip for 45 min. technique. 20 days later I added dibencozide. Within days, my eyes felt much better, like my eyelids had gotten much lighter and were more open, and I felt markedly more energized and social. That lasted about 2 weeks, then back to my usual. I've added lots of supplements since then, looking to recreate that wonderful feeling, but it's been elusive. I get all my supplements from iherb now. I see my doctor next week, to get back hormone test results, and I will consult with him about doing a methylation pathways panel.
 
Messages
40
Location
Wausau, WI
Would the 'B-Complex Plus (with Metafolin L-5-MTHF) Vegetable Capsules by Pure Encapsulations' be the methylfolate, and the 'Enzymatic Therapy B12 Infusion' be the methyl b12?

And do you have trouble getting the methylcobalamin to last 45 min. under your lip? I'm imagining it to disintegrate long before then :)

I do a lot of my shopping on Vitacost.com, and other than the dibencozide, everything else has been coming up a bit cheaper there (the dibencozide is $3 less on iHerb). The L-5- MTHF I'll have to get on it's own -- I found it at Pureformulas.com.

Your trouble shooting journey sounds to be the consensus of any of these protocols -- maddening to say the least, but at this point in the game, I think we have little alternative toward such concrete hope. I commend your efforts for working toward getting back to the window of health you felt when starting the dibencozide and b12. The rare glimpses I get, random hours or days of clarity or energy, are enough to persuade me that my body IS capable of health, I just have to figure out how to get it there on a reliable, regular basis.
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
Usually people need more metafolin than what is in Pure Encapsulation's B-Complex Plus. The recommended L-5-MTHF as a stand-alone product is Solgar Metafolin, or Quatrefolic, or there's a couple others. People have reported that L-5-MTHF is sometimes the most problematic supplement, and often they need to start with crumbs. So that would be one reason to start with a stand-alone L-5-MTHF product, so you can adjust the dose of just that as needed.

The Enzymatic Therapy B12 Infusion is a top recommended methy B-12 brands. The other is Jarrow, but see the current thread on whether Jarrow's mB12 has changed. People on that thread are mentioning being happier now with the Solgar brand.

I usually get the Jarrow methylcobalamin to last 45 min. under my upper lip. The Enzymatic Therapy mB12 doesn't last as long.

I found that two week window of amazing energy to be highly motivating. I never knew I was capable of feeling so good and upbeat, and I want more of it. I highly agree with your last two sentences.
 
Messages
40
Location
Wausau, WI
A big thanks for steering me pre-order on those, Lynn. I read the Jarrow thread and think I'm going to go ahead and get the Solgar brand for both the L-5-MTHF and the mB12. Should I be getting another B-Complex then or are these enough? And I read something about avoiding B6 with CBS mutations... I've pinned down high sulfur veggies and animal proteins as another set of triggers, and have the test strips on the way to confirm (Heartfixer also said 9 out of 10 of us will have a CBS mutation anyway), so I'm wanting to do what I can to start the CBS drain and deplete sulphur reserves. Are the supplements on the protocol in sync with avoiding B6? I guess the only real concern would have been in the b-complex. Just wondering what people are doing for that...