• 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 register, simply click the Register button at the top right.

Freddd protocol 2014 Cliff Notes

Messages
21
Many of us here I think are having trouble wrapping our heads around the info that's spread over many threads and the recommendations have changed over time. I've attempted to condense the latest discussions down to just what someone with brain fog :) would need to know to get started. If I've gotten anything wrong or important info is missing please contribute to the thread.

To start:

“A low dose B-complex suitable for twice a day
use without folic or folinic acid and without CyCbl is needed. A, C (minimum 5000mg), D, E, magnesium, zinc, calcium, selenium, chromium, trace minerals, lecithin (or variants), omega3 oils are all needed before starting the active b12 and folate.” A deficiency in any of these can prevent the protocol from being effective.

For the multi B Freddd is currently using NatureMade B-Complex with C, product # 1338.

(I suspect that magnesium l-threonate might be more effective for our purposes. It is said to be the only form that crosses the blood-brain barrier.)

Once this basic supplementation is underway the “deadlock quartet” can be started:

“1 - 1mg of Enzymatic Therapy B12 infusion or 1/4 of a Country Life Methyl B12 5mg product # 6304 (not their similar products), and 1/4 of an Anabol Naturals Dibencoplex Capsule or tablet, both held between cheek and gum for up to two hours to maximize absorption. It takes some practice. Longer contact to skin means more absorbed. (The Jarrow brand has ceased being effective for many here.)
2 - L-methylfolate, Metafolin is the one I've used and tested. I will be testing the new variety, Quatrefolic soon and have heard only good things about it. For starters, 400mcg twice a day (half a tablet twice a day) is a good place to start for many.”

At this point many of us will experience a worsening of symptoms due to low potassium. THIS CAN BE DANGEROUS, EVEN FATAL. It’s important to have some form of potassium on hand before starting. Potassium interferes with methylfolate absorbtion so they need to be taken separately. Four doses/day of both methylfolate and potassium are preferable to one or two doses.

As the B12s start to wake up the damaged nerves it’s common to experience a heightened perception of the senses, both positive and negative. If nerve damage exists in the brain there may be strong emotional and personality changes. All of these changes should become less noticeable with time.

After potassium and methylfolate have balanced out carnitine can be added in the form of l-carnitine fumarate. Jarrow freebase liquid carnitine works well for many. It’s best to start at a very low dose and titrate up to avoid anxiety. Liquid carnitine is ideal for this.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Lol i jumped onto the carnatine a bit too soon before addressing folate deficiency and suffered the kind of anxiety where it literally feels like you are ready to burst out of you skin!

Other then the minor side effects like that I noticed it helped though!
 

whodathunkit

Senior Member
Messages
1,160
Good on you for making this thread, @EvanB.! It will be helpful. Hopefully we can all add to it.

My contribution right now can be recommended brands, irrespective of dosage. Dosage is up to individual tolerance. This is just to clarify brands.

Freddd recommends:

Methylcobalamin: Enzymatic Therapy 1000mcg/1mg, or CountryLife 5000mcg/5mg, #6304 (as you noted above)
Adenosylcobalamin: Anabol Naturals Dibencozide
L-carnitine Fumarate (LCF): Doctor's Best
Methylfolate: Solgar Folate (as Metafolin)

Also, FWIW, I didn't get much benefit from magnesium l-threonate when I tried it a while back. Maybe a little, but not worth the increased price. I find magnesium citrate and orotate do me well. A mix of different forms of magnesium can be beneficial, as well.

Like Martial, I too find LCF to make me kind of speedy and jumpy. I find splitting the capsules up works well, even if it's not terribly precise. I've not tried the liquid.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
One thing to add if you have lyme disease DO NOT take magnesium until you are one some form of antibiotic treatment whether pharmaceutical or herbal. If not on treatment the magnesium help's in creating and strengthening the cysts that the bacteria can hide in.
 
Messages
34
Hi,

I been doing some research as well. it is a bit of work of progress but I thought I would post it in case it might be helpful and also if anyone has any comments.

I've uploaded a PDF with some schedule table of taking the supplements.

Below the line is a draft of a email that I'm going to send my friend, who I'm doing the research for.

It would be great if anyone has any suggestion or amendments to what I'm compiling.

------------------------------------------------------------------------------------------------------------------------------------------------

I would start off slow and work up to a higher dose.


Supplement support



Take these for the first week and continue taking.


B12 supplementation


The first B12 is of the Hydroxycobalamine type


This type is to see if you tolerate it and can convert to active forms of B12.


The first B12 would be from the Finchley Clinic: https://www.thefinchleyclinic.com/shop/vitasorb-b12-15ml-p-254.html


You can take small doses at 50 Mcg per 10 drops.


So my idea would be to

  • Start at 10 Drops

  • Increase by 5 drops a day up until a tolerance of 500 mcg

  • All the time seeing how you feel and reducing the dose necessary

Schedule Using 4 bottles:

Refer to the Hydroxycobalamine page

Once tolerance has been reached at 500 Mcg a day, then we can try an active form that can be taken in higher doses more conveniently and also with better absorption.


It possible that you are taking 10 Mcg of active b12 daily at this stage


B12. Methylcobalamin type


Start with an active B12 supplement:


Tablets

http://www.amazon.co.uk/gp/product/B001LR5ONY/ref=ox_sc_sfl_title_3?ie=UTF8&psc=1&smid=A1GRDKQM99I20


Or http://www.amazon.co.uk/B12-Infusion-30-Chewable-Tablets/dp/B00020IHQW/ref=sr_1_1?s=drugstore&ie=UTF8&qid=1393882569&sr=1-1&keywords=enzymatic+therapy+b12


Drops


http://www.amazon.co.uk/California-Natural-B-12-Methylcobalamin-Oz/dp/B001TIP1OW/ref=sr_1_12?ie=UTF8&qid=1393886956&sr=8-12&keywords=Methylcobalamin


or http://www.amazon.co.uk/METHYL-B12-MEGA-DROPS-fl-oz/dp/B00EU7RVRE/ref=sr_1_fkmr0_1?ie=UTF8&qid=1393888320&sr=8-1-fkmr0&keywords=B12+MEGA+DROPS%E2%84%A2+15+mL


  • Since this is a different form of B12 the thinking is to start lower and work up.

  • From the previous schedule a tolerance of 500 Mcg has been reached, but since it’s unclear how much would be converted into the active B12 a smaller starting dose of 250 Mcg to start with.

  • Tablets are easy to cut into quarters to give 250 Mcg of B12

  • Drops would need to be diluted

  • METHYL B12 MEGA DROPS 15 mL = 1000 Mcg a drop. 1000 / 20 of water = 50 Mcg a drop in diluted format.

It would be either tablet or drops in the tables below


Schedule for tablets at 4 weeks length:

Refer to the Methylcobalamin nuggets page.

Schedule for drops at 3 weeks length:

Refer to the Methylcobalamin drops page

If all is well at this stage then a month and 3 weeks to two months have passed reaching up to a daily amount of active Methylcobalamin B12 at 1000 Mcg taken with 200 Mcg absorbed.


B12. Dibencozide type


The next form of B12 could be added at this point. The form can be purchased from here: http://www.amazon.co.uk/ADENOSYL-B12-MEGA-DROPS-fl-oz/dp/B00ET57IIY/ref=sr_1_fkmr0_1?ie=UTF8&qid=1393863493&sr=8-1-fkmr0&keywords=ADENOSYL+B12+MEGA+DROPS%E2%84%A2+15+mL


Or http://www.amazon.co.uk/Anabol-Naturals-Dibencoplex-Caps-10000/dp/B0002JGNVO/ref=sr_1_1?ie=UTF8&qid=1393885886&sr=8-1&keywords=anabol+dibencoplex


  • The drops would need diluting into 1 drop of 2000 Mcg to 40 drops of water to give a starting 50 Mcg dose

  • The capsules would be hard to make a small dose, probably 1/10 would give 1000 Mcg for 200 Mcg absorbed

  • You would still keep taking the 1000 Mcg of Solgar supplement or drops when this one is introduced.

Schedule at 3 weeks length:
Refer to the Dibencozide page.

If all is well at this stage then 2 months and two or three weeks have passed reaching up to a daily amount of active B12 of Dibencozide at 1000 Mcg taken with 200 Mcg absorbed and Methylcobalamin at 1000 Mcg taken with 200 Mcg absorbed


At this point a decision can be made if to introduce metafolin. This can have a big effect since it helps the B12 to be more effective


Metafolin


A recommended source can be purchased here: http://www.amazon.co.uk/Solgar-Folate-400-mcg-Tablets/dp/B001LQY9ZO/ref=wl_it_dp_o_pC_nS_nC?ie=UTF8&colid=25IHI57ICPPWI&coliid=I34FGODE6J6YJG


While taking metafolin you would continue with both B12 at 1000 Mcg each.

Refer to the fifth metafolin page.
 

Attachments

  • B12 protocal.pdf
    199 KB · Views: 104
Last edited:
Messages
21
Wow Richard, that's a lot of work you've done for your friend. Speaking of schedules I've been meaning to make up a simple daily supps schedule that I can put up on the fridge so I don't flake out on my afternoon doses (and missing doses makes it harder to remember to take them-haha).
 

Riley

Senior Member
Messages
178
“A low dose B-complex suitable for twice a day
use without folic or folinic acid and without CyCbl is needed. A, C (minimum 5000mg), D, E, magnesium, zinc, calcium, selenium, chromium, trace minerals, lecithin (or variants), omega3 oils are all needed before starting the active b12 and folate.” A deficiency in any of these can prevent the protocol from being effective.
Does anyone know of an efficient way to get these? Just take some sort of multivtitamin? Or are do they all need to be ordered individually?
 
Messages
34
Probably have to build it up from multiple items. The only thing I have seen, is source of life gold, but that has the folic acid and cyanocobalamin b12.
 
Messages
21
For the multi B I've been using Douglas Labs B-Complex with Metafolin and Intrinsic Factor. Works well for me combined with Perque hydroxycobalamin. I feel better right away and get a metallic taste in my mouth that I assume means I'm detoxing (and I take a handful of cracked cell wall chlorella to help remove the metals).
 

Phred

Senior Member
Messages
141
@EvanB. that metallic taste can also be a lack of zinc. I was getting that last year, upped my zinc and it went away.
 

brenda

Senior Member
Messages
2,261
Location
UK
One thing to add if you have lyme disease DO NOT take magnesium until you are one some form of antibiotic treatment whether pharmaceutical or herbal. If not on treatment the magnesium help's in creating and strengthening the cysts that the bacteria can hide in.


This is contraversial. Some doctors say you need it so take it anyway.
 
Messages
61
Many of us here I think are having trouble wrapping our heads around the info that's spread over many threads and the recommendations have changed over time. I've attempted to condense the latest discussions down to just what someone with brain fog :) would need to know to get started. If I've gotten anything wrong or important info is missing please contribute to the thread.

To start:

“A low dose B-complex suitable for twice a day
use without folic or folinic acid and without CyCbl is needed. A, C (minimum 5000mg), D, E, magnesium, zinc, calcium, selenium, chromium, trace minerals, lecithin (or variants), omega3 oils are all needed before starting the active b12 and folate.” A deficiency in any of these can prevent the protocol from being effective.

For the multi B Freddd is currently using NatureMade B-Complex with C, product # 1338.

(I suspect that magnesium l-threonate might be more effective for our purposes. It is said to be the only form that crosses the blood-brain barrier.)

Once this basic supplementation is underway the “deadlock quartet” can be started:

“1 - 1mg of Enzymatic Therapy B12 infusion or 1/4 of a Country Life Methyl B12 5mg product # 6304 (not their similar products), and 1/4 of an Anabol Naturals Dibencoplex Capsule or tablet, both held between cheek and gum for up to two hours to maximize absorption. It takes some practice. Longer contact to skin means more absorbed. (The Jarrow brand has ceased being effective for many here.)
2 - L-methylfolate, Metafolin is the one I've used and tested. I will be testing the new variety, Quatrefolic soon and have heard only good things about it. For starters, 400mcg twice a day (half a tablet twice a day) is a good place to start for many.”

At this point many of us will experience a worsening of symptoms due to low potassium. THIS CAN BE DANGEROUS, EVEN FATAL. It’s important to have some form of potassium on hand before starting. Potassium interferes with methylfolate absorbtion so they need to be taken separately. Four doses/day of both methylfolate and potassium are preferable to one or two doses.

As the B12s start to wake up the damaged nerves it’s common to experience a heightened perception of the senses, both positive and negative. If nerve damage exists in the brain there may be strong emotional and personality changes. All of these changes should become less noticeable with time.

After potassium and methylfolate have balanced out carnitine can be added in the form of l-carnitine fumarate. Jarrow freebase liquid carnitine works well for many. It’s best to start at a very low dose and titrate up to avoid anxiety. Liquid carnitine is ideal for this.

@EvanB. What kind of complex are people like me with CBS mutation supposed to take instead of complex with b6 (p5p)? Is there a b-complex without folic acid and b6?

This is the only product I've found but I'm not thrilled with the idea it has aloe vera in it bc I'm so sensitive to everything and has folic acid.
https://www.desertharvest.com/shop//index.php?crn=207&rn=440&action=show_detail
 
Last edited:
Messages
34
Location
Alexandria, VA, USA
Bare with me, I'm still trying to figure out how the "quote" works so instead I just copied and pasted:

"After potassium and methylfolate have balanced out carnitine can be added in the form of l-carnitine fumarate. Jarrow freebase liquid carnitine works well for many. It’s best to start at a very low dose and titrate up to avoid anxiety. Liquid carnitine is ideal for this."

When people say things like "have balanced out", how is it that one should determine that things have balanced out? Are people basing this off of symptoms? And if so, how do you separate the side effects of just healing and taking too much of something? Are people going to their doctors and getting these tests redone? If so, I'd say that's expensive as hell considering I would probably have to see an integrative doctor since my PCP doesn't really seem interested in exploring this route.

I'm just curious how one finds these balances between supplements...

Thanks!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@wootah88 I'm not getting any tests. The ones I've had in the past all seemed pretty useless. I'm going totally by symptoms and self-testing for my supps.
how do you separate the side effects of just healing and taking too much of something?
Fred refers to some things, like neurological symptoms, being a result of healing, the system returning to life. But I think for the most part that immediate symptoms will probably be related to an imbalance. Re potassium/methylfolate: folate can/will create a need for more potassium, because it's turned on a process of cell regeneration. When I need K+ my heart feels heavy or fast, I might feel restless, a bit breathless, my eyes tend to look 'piggy', somehow too small. When I take K+, the symptoms are relieved almost immediately.

We have to get very particular about tracking our symptoms. Someone said people regard her as having OCD, or my attention to symptoms could easily be described as hypochondriacal. But my body is where I live. And learning how to attend to and differentiate symptoms is how I've been progressing. I don't always get the right answer immediately, but as I keep looking and listening, I've made amazing progress. I really recommend you learn self-testing. That's the way I've inched my way forward. It takes some time to build up trust in your body's responses, but that will build over time, and takes some questions out of the mind, allowing body to respond directly.;)

Re quotes: Select the piece to quote and copy, click the quotes symbol in top bar, which will leave your cursor in the middle of the quotes and you then paste. Or you can paste your selection into comment, highlight it, then click quote symbol.

Self-testing http://www.youtube.com/watch?feature=player_detailpage&v=Ex59wHLk3Q0

Good written description of simple self-testing: http://www.goodhealthinfo.net/herbalists/muscle_testing.htm
 
Messages
8
I was wondering if anyone could clarify the amount of time supplements should be taken next to, or apart from one another. My understanding is that:

  • Potassium at least 45mins apart from folate & B12
    • (Potassium interferes with absorption)
  • Folate 30+mins before B12
    • (because B12 absorbs better if taken after folate)
  • B-Complex When?

Also, why is it important to have a B-Complex that doesn't contain B12 or folate?