Active B12 Protocol Basics

[Violeta]

I see on page one of this thread that the recommended source of adenosylcobalamin is Source Naturals. I didn't see any at iherb, who carries Source naturals stuff. Is there any chance that it is the dibensozide by Source Naturals?s

Thanks, still having brain difficulty so I have to take the short cut and ask for help.

Betsy

 

[Freddd]

To Fredd and others - bless you for taking the time and effort for giving such valuable advice in this forum!
My question before was way to broad to deserve an answer, I will post more specific questions -

1) the ratios, once again.....the ratios between MeCbl/AdCbl/MeFolate + cofactors are of course individual and must be determined by trial and error, right? However, what are the recommended ratios to start out with?

2) is it a bad idea to mix methyl- and hydroxycobalamin in a protocol (as Yasko sometimes advises according to genotype) if so, why?

3) I take my protocol supps early in the day, before 10am, in the early afternoon I still crash badly; weak knees (feeling that kness cannot support my weight) fatigue, brain fog, general neuro weakness, headaches (different types including local stabbing ones) I kind of go from beeing slightly wired during mornings to beeing more or less incapacitated in the afternoons/evenings....I have upped potassium gluconate to about 600mg-1g/day....perhaps I need more? Any other suggestions?

4) Since I know that my two daughters (age 6 months and five years) have inherited part of my +/+ MTHFR etc, I am considering giving them both methylfolate, like 100-300 mcg daily, in the form of methylmate drops perhaps, should I do this?

Hi Moshi

ratios, once again.....the ratios between MeCbl/AdCbl/MeFolate + cofactors are of course individual and must be determined by trial and error, right? However, what are the recommended ratios to start out with?

There are no fixed ratios.

With 1mg of AdoCbl and 1mg of MeCbl each held for 1-2 hours against oral mucosa, one could end up with 200-400 mcg or more absorbed. This is enough to turn on all layers of healing except CNS for many of us. A start of methylfolate of 800mcg or less will usually produce a burst of healing on a couple of layers that then demands more folate than the body has easily available and so shorts other layers to supply the ones that are healing causing paradoxical folate insufficiency. So one titrates methylfolate until the insufficiency symptoms go away. This is usually between 1600mcg and 20-30mg depending upon how one reacts to other folates and B1, b2, b3.

While this is happening there is also usually a need for potassium of which needs to be titrated to the level of no symptoms. This usually happens in the range of 1200-3000mg daily in 4-6 divided doses. Again, this is dependent upon how fast cells are being formed and if too much b1, b2, and/or b3 can also be insatiable.

It is via systematic titration, finding peak effectiveness and staying there, not trial and error.


is it a bad idea to mix methyl- and hydroxycobalamin in a protocol (as Yasko sometimes advises according to genotype) if so, why?
I have no idea if HyCbl can causes problems when taken with MeCbl and AdoCbl. Some literature has suggest that it competes with the active b12s. The answer might be determined at the individual level or even the order taken. The thing is that perhaps 10mcg a day of HyCbl converts to active b12s. If one is absorbing 1000mcg of active b12s directly, will it make any difference at all or merely be extra expense. HyCbl before it does anything has to convert to the two active forms as nobody has any HyCbl deficiency symptoms whereas everybody has AdoCbl and MeCbl deficiency symptoms

I take my protocol supps early in the day, before 10am, in the early afternoon I still crash badly; weak knees (feeling that kness cannot support my weight) fatigue, brain fog, general neuro weakness, headaches (different types including local stabbing ones) I kind of go from beeing slightly wired during mornings to beeing more or less incapacitated in the afternoons/evenings....I have upped potassium gluconate to about 600mg-1g/day....perhaps I need more? Any other suggestions?

Serum halflife might be a problem. If I don't take b-complex twice a day I get a 24 hour pain cycle and at the 16-24 hour mark, heart arrhythmias. AdoCbl and LCF usually make for a much more even energy as they restore the mitochondria and are essential for that. Many have found that a second smaller LCF dose in midafternoon makes a difference. Also, l-methylfolate has a short halflife, about 3 hours so I find it best in at least 3 doses a day.

4) Since I know that my two daughters (age 6 months and five years) have inherited part of my +/+ MTHFR etc, I am considering giving them both methylfolate, like 100-300 mcg daily, in the form of methylmate drops perhaps, should I do this?[/

Only with MeCbl to prevent brain damage from SACD. Maybe 50-100mcg of MeCbl. You can start with far less and titrate each of them.

 

[AngieLynn]

Hi AngieLynn,


Check the symptoms below. If healing is turned on at all she might have group 1 symptoms from low potassium. If she had folate insufficiency then she will have group 3 symptoms. It possible to have both...

I would get her off these immediately and replace with something that could help her heal. Folate without MeCbl is DANGEROUS to ones neurological health..

Hi Fredd, Thanks so much for taking all this time to help! I really believe this can make a huge difference to my health, and I’m grateful to you! I can’t wait to see what it will do. I've been seriously ill for decades and this gives me hope.

Here are some more follow-up questions I’d appreciate your help with.

For my sister:
1. I'm going to send her this information and let her decide. I know she has some improvement on these things and may not want to get off. If that's the case, could we minimize the damage and possibly help her improve by giving her the methylb12's, methylfolate and potassium?

For me:

I'm going to order the supplements you're recommending, and trash what I already bought, just to be on the safe side. I have a couple questions.

1. I want to make sure I’m understanding your dosage recommendations correctly Fredd. I get a bit confused. So I think you’re saying to do the following:

Start with:

At least 200 mcg of MeCbl

At least 200 mcg of AdoCbl

Then add methylfolate and potassium – titrate up to the point that I feel best.

Then add L-carnitine fumarate (titrate up to one 855 mg capsule a day)


Is this correct?


2. For the ENZY tablet, I assume you mean: 1 Enzymatic Therapy B12 Infusion (1,000 mcg MeB12). Is that correct?

3. I'm currently up to 6000 mcg of Solgar MeB12. Should I start right up with the Enzymatic Therapy B12 at the same dose? Or do you think it may be more potent than the Solgar and I should start low and titrate up? Or should I just drop down to the 200 mcg?

4. For the Anabol Dibencoplex capsule:

- You mention that I should put it under the upper lip and gum to dissolve. Being that it's a capsule, do you stick the actual capsule under the gum/lip? Or do you put the contents of the capsule up there?

- Also they're super high potency, at 10 mg a capsule. Would you just empty the capsule to 1/10? That would be hard to figure. What are your thoughts?

5. I see you mentioned that you take your methylation vitamins 3 times a day. If I wanted to do the same, how does that work for me with the above dosages?

6. According to Dr. Lynch's plan for my particular methyl disorder (C677T) he suggests working up to twice a day on:

2 times a day:
- 2400 mcg methylfolate
- 3000 mcg B12
- 50 mg of P-5-P
- 90 mg B2 as riboflavin 5'-phosphate
- 1800 mg Betaine (trimethylglycine as TMG)

- Do you agree that the P-5-P, B2 and the Betaine are needed?

- Is this good as a guideline for my minimum dose ultimate goal? Or do you think this should be more individualized?

 

[Freddd]

I see on page one of this thread that the recommended source of adenosylcobalamin is Source Naturals. I didn't see any at iherb, who carries Source naturals stuff. Is there any chance that it is the dibensozide by Source Naturals?s

Thanks, still having brain difficulty so I have to take the short cut and ask for help.

Betsy

Hi Betsy,

Anabol Naturals Dibencoplex appears to be best performing. I shake a fraction of a capsule out onto a spoon and put it between lower lip and gum. It can last 1+ hours there and gets good absorption.

 

[RedKayak]

Good evening, everyone!

I am eager to ask if anyone has heard of a B12 deficiency causing a headache without any other signs of CFS.

My brother, currently 21, has had a non-stop, 24/7 headache for the past 11 years. We have been to countless neurologists, including the most prestigious ones, and the cause remains a mystery. The onset of the headache began about one year after chemo/radiation and surgery for a medullablastoma tumor.

The reason that I'm on this site is because I suspect a methylation problem given that his homocysteine tested at 14.4 and his three mutations of the MTHFR gene. We began Freddd's protocol, and titrated the B12 up to 20mg, which is where we had to stop because the 20mg took 5 hours to dissolve. (This is the Enzymatic Infusion brand.) From the 20mg of B12, a dash of Adeno, and a dash of l-carn, he has felt absolutely no change.

We are currently waiting for a shipment of 5mg pills, of the Blue Bonnet and Solgar brands, so we're hoping that a higher dose dissolved in less hours will help. I just wondered if anyone might have observations, insights, or anecdotes to share.

Many thanks.

 

[Violeta]

Hi Betsy,

Anabol Naturals Dibencoplex appears to be best performing. I shake a fraction of a capsule out onto a spoon and put it between lower lip and gum. It can last 1+ hours there and gets good absorption.

Thanks, Freddd, I will get that.

They do have it at iherb and it's not a bad price.

 

[Freddd]

Good evening, everyone!

I am eager to ask if anyone has heard of a B12 deficiency causing a headache without any other signs of CFS.

My brother, currently 21, has had a non-stop, 24/7 headache for the past 11 years. We have been to countless neurologists, including the most prestigious ones, and the cause remains a mystery. The onset of the headache began about one year after chemo/radiation and surgery for a medullablastoma tumor.

The reason that I'm on this site is because I suspect a methylation problem given that his homocysteine tested at 14.4 and his three mutations of the MTHFR gene. We began Freddd's protocol, and titrated the B12 up to 20mg, which is where we had to stop because the 20mg took 5 hours to dissolve. (This is the Enzymatic Infusion brand.) From the 20mg of B12, a dash of Adeno, and a dash of l-carn, he has felt absolutely no change.

We are currently waiting for a shipment of 5mg pills, of the Blue Bonnet and Solgar brands, so we're hoping that a higher dose dissolved in less hours will help. I just wondered if anyone might have observations, insights, or anecdotes to share.

Many thanks.

Hi RedKayak,

What about L-methylfolate?. It is a 4 way deadlock that is most common. Also, the type of carnitine, 90% (l-carnitine fumarate and for 10% ALCAR are the only effective ones. They need to be taken without food, 30 minutes before a meal, and a "dash may not have been enough. On a such a continuous basis there is enough to penetrate the CNS by the second hour. There are half a dozen other things that could likely deadlock it in a reasonable percentage of times, magnesium, SAM-e, TMG, Vit D, any of the vitamins for that matter, zinc, d-ribose and probably a few more.

 

[Violeta]

Has your brother tried GABA? I know someone who has had 4 cancer brain surgeries and found that GABA helped her feel better, but I'm not sure if she had a headache. She said it helped with depression, but GABa can be used for headache, too. Just a thought.

 

[RedKayak]

Hi RedKayak,

What about L-methylfolate?. It is a 4 way deadlock that is most common. Also, the type of carnitine, 90% (l-carnitine fumarate and for 10% ALCAR are the only effective ones. They need to be taken without food, 30 minutes before a meal, and a "dash may not have been enough. On a such a continuous basis there is enough to penetrate the CNS by the second hour. There are half a dozen other things that could likely deadlock it in a reasonable percentage of times, magnesium, SAM-e, TMG, Vit D, any of the vitamins for that matter, zinc, d-ribose and probably a few more.

Thank you very much, Fred, for your response.

Yes, on the L-methylfolate--he takes 800mcgs when he wakes up with his thyroid, and then waits an hour before breakfast.

L-carnatine fumarate-- we can increase this as a test.

SAMe - this was my pathway to the site. I had tried giving him SAMe, before I knew about B12, and it spiked his headache, as did the NAC. But perhaps in conjunction with the B12, the SAMe would be helpful?

Zinc, Vitamin D, mag, etc - He's on all of these everyday.

Ribose and TMG are two I hadn't heard of, though I think he took Betaine long before the B12 to aid in digestion.

Thank you very much for your help. I will investigate these and report back to the website.

 

[RedKayak]

Has your brother tried GABA? I know someone who has had 4 cancer brain surgeries and found that GABA helped her feel better, but I'm not sure if she had a headache. She said it helped with depression, but GABa can be used for headache, too. Just a thought.

Violeta,

Thank you very much for your post. We are honestly willing to research and try anything at this point--well, anything other than botox, immune suppressors, and opiates. The Wikipedia post on GABA is interesting, and I am adding it to my spreadsheet of things to try.

Thank you

 

[Moshi]

Dear Freddd,
This is the Open Medicine Institute I was referring to (Kogelnik) those who subscribe to their newsletter got the following message two days ago urging us to donate....

Quote:
Donate $12 for B12
Give $12 for B12/Folate,MTHFR International Clinical Trial
$31,500 out of $275,000 so far
64 more days.
Please make a donation
--What if an effective, relatively inexpensive and readily accessible treatment was possible right now to reduce fatigue and brain fog?
--What if all that was standing between you and others receiving that treatment was your doctor’s lack of knowledge?
Together, let’s get patients a study they can print out and take to their doctor.
This International Clinical Trial will be lead by Open Medicine Institute, California,US with Dr. Andreas Kogelnik and Dr. David Kaufman in collaboration with Simmaron Research, Nevada, US, Dr. Dan Peterson and Gottfries Clinic AB, Gottenburg, Sweden. The Trial will include B12 and Folate supplementaion in patients with and without a MTHFR or methylation mutation.
End of quote.

The Gottfries Clinic in Gothenburg is the only clinic in Sweden conducting serious reserch in the ME/CFS/FM area. I find this promising. I called them immediately and asked if I could participate in the trial but they declined as they already have all the subjects they need = their own patients.

 

[AngieLynn]

Hi Fredd,

I noticed you answered some people after my post - you may be planning to come back to it, but I just wanted to let you know it's there in case you missed it. I think this is the link to it:

AngieLynn, Yesterday at 2:52 PM

Thanks so very much for your help!

 

[Violeta]

Violeta,

Thank you very much for your post. We are honestly willing to research and try anything at this point--well, anything other than botox, immune suppressors, and opiates. The Wikipedia post on GABA is interesting, and I am adding it to my spreadsheet of things to try.

Thank you

RedKayak, you're welcome, and let us know how it goes.

So great of you to help your brother!

 

[Freddd]

Hi Fredd, Thanks so much for taking all this time to help! I really believe this can make a huge difference to my health, and I’m grateful to you! I can’t wait to see what it will do. I've been seriously ill for decades and this gives me hope.

Here are some more follow-up questions I’d appreciate your help with.

For my sister:

1. I'm going to send her this information and let her decide. I know she has some improvement on these things and may not want to get off. If that's the case, could we minimize the damage and possibly help her improve by giving her the methylb12's, methylfolate and potassium?

For me:

I'm going to order the supplements you're recommending, and trash what I already bought, just to be on the safe side. I have a couple questions.

1. I want to make sure I’m understanding your dosage recommendations correctly Fredd. I get a bit confused. So I think you’re saying to do the following:

Start with:

At least 200 mcg of MeCbl

At least 200 mcg of AdoCbl

Then add methylfolate and potassium – titrate up to the point that I feel best.

Then add L-carnitine fumarate (titrate up to one 855 mg capsule a day)


Is this correct?


2. For the ENZY tablet, I assume you mean: 1 Enzymatic Therapy B12 Infusion (1,000 mcg MeB12). Is that correct?

3. I'm currently up to 6000 mcg of Solgar MeB12. Should I start right up with the Enzymatic Therapy B12 at the same dose? Or do you think it may be more potent than the Solgar and I should start low and titrate up? Or should I just drop down to the 200 mcg?

4. For the Anabol Dibencoplex capsule:

- You mention that I should put it under the upper lip and gum to dissolve. Being that it's a capsule, do you stick the actual capsule under the gum/lip? Or do you put the contents of the capsule up there?

- Also they're super high potency, at 10 mg a capsule. Would you just empty the capsule to 1/10? That would be hard to figure. What are your thoughts?

5. I see you mentioned that you take your methylation vitamins 3 times a day. If I wanted to do the same, how does that work for me with the above dosages?

6. According to Dr. Lynch's plan for my particular methyl disorder (C677T) he suggests working up to twice a day on:

2 times a day:
- 2400 mcg methylfolate
- 3000 mcg B12
- 50 mg of P-5-P
- 90 mg B2 as riboflavin 5'-phosphate
- 1800 mg Betaine (trimethylglycine as TMG)

- Do you agree that the P-5-P, B2 and the Betaine are needed?

- Is this good as a guideline for my minimum dose ultimate goal? Or do you think this should be more individualized?

1. I'm going to send her this information and let her decide. I know she has some improvement on these things and may not want to get off. If that's the case, could we minimize the damage and possibly help her improve by giving her the methylb12's, methylfolate and potassium?

Quite possibly.


At least 200 mcg of MeCbl and At least 200 mcg of AdoCbl

This would be a desired absorbed level, It is about 20% absorption of a 1000mcg tablet or 10% of the Anabol capsule. This is sufficient to get all healing going subject to other nutrients needed except CNS healing for some people.


Then add methylfolate and potassium – titrate up to the point that I feel best.

I would start the methylfolate 30-60 minutes before putting the b12 tablet under my lip. The presence of methylfolate helps retain b12 much better. When they are started together, donut hole folate deficiency and low potassium typically occur on the third day. Then one needs to take the potassium, say 3 tablets at a time with a glass of water every 2 hours until the low potassium symptoms are gone. They do change that fast. And each oral dose only lasts a few hours. If it takes 16 tablets to get it under control, expect to take that many the next day in say 4 or 5 doses and make further adjustments as needed. Typically after bringing folate up until folate deficiency symptoms start regressing. Some symptoms change evident in hours. For instance for me when angular cheilitis is starting it starts burning before the sores are evident. When it turns around the fire goes out in hours. Water starts accumulating immediately for me with folate deficiency and it starts coming off immediately upon turn around. Then potassium may have to be adjusted a little. It may go back and forth a few times.



Then add L-carnitine fumarate (titrate up to one 855 mg capsule a day)
It has 500mg of carnitine from 855 from carnitine fumarate. Let's use 500mg so we can compare across forms. I don't do this with AdoCbl and MeCbl standardized on CyCbl however, of folates.

If you have anxiety and tend to over emphasize fears then you might consider microtitrating with the Jarrow Liquid carnitine (freebase). With that you might start at 150mcg a day whereas with the LCF maybe 64mg to start with (1/8 capsule)

2. For the ENZY tablet, I assume you mean: 1 Enzymatic Therapy B12 Infusion (1,000 mcg MeB12). Is that correct?

To start with, yes.

I'm currently up to 6000 mcg of Solgar MeB12. Should I start right up with the Enzymatic Therapy B12 at the same dose? Or do you think it may be more potent than the Solgar and I should start low and titrate up? Or should I just drop down to the 200 mcg?

Start with the Enzy at 1000mcg which will average about 200mcg absorption. It is qualitatively different from the Solgar.


For the Anabol Dibencoplex capsule:
- You mention that I should put it under the upper lip and gum to dissolve. Being that it's a capsule, do you stick the actual capsule under the gum/lip? Or do you put the contents of the capsule up there?
- Also they're super high potency, at 10 mg a capsule. Would you just empty the capsule to 1/10? That would be hard to figure. What are your thoughts?

I open the capsule, shake a little onto a spoon and close it up and put back for next dose. 1/10 to 10mg might very well make no noticeable difference between them. Experiment. Find what works best for you. I'm relatively insensitive to AdoCbl changes. Some people are not.

I see you mentioned that you take your methylation vitamins 3 times a day. If I wanted to do the same, how does that work for me with the above dosages?

With the MeCbl I would experiment. You might find you get deeper penetration and better results by taking one dose of 5mg whereas someone else may get better results by taking 1 mg 5 times a day.

Most do best with methylfolate several times a day because of it's relatively short halflife. It needs to be taken at different times form the potassium. So again, folate with 1 tablet each 4 hours might work better than 5 at once in the morning. Like potassium, I have gone into folate insufficiency 6 hours after a barely adequate dose. Take the folate first and wait for 45 minutes for potassium.

2 times a day:
- 2400 mcg methylfolate
- 3000 mcg B12
- 50 mg of P-5-P
- 90 mg B2 as riboflavin 5'-phosphate
- 1800 mg Betaine (trimethylglycine as TMG)
- Do you agree that the P-5-P, B2 and the Betaine are needed?


The B2 in that quantity could really increase demand for folate and potassium while decreasing healing. I wouldn't suggest more than about 40mg a day total of B2 unless you find by titration that it improves healing or decreases deficiency symptoms. That would be subject to repeated trials until you locate optimum.

The p-5-p is a big I don't know. I'm experimenting with it and have never had much difference with it. Some can be a critical cofactor for a few people. I have seen no decrease of effectiveness or other because of too much.

The TMG is a titrate by effect. However, it might take a month or more to notice any differences between doses or even taking it and not. On the other hand it can tame the wired feeling of LCF for many people.

As far as the MeCbl and Methylfolate, sore, try that and other dosing schedules. I would also suggest titrating up to the point that no more makes any difference. Higher doses seem to penetrate more deeply for longer. It heals more quickly but not sure if to greater extent or not in the end. A single dose of 1000mcg a day (200mcg absorbed) probably makes 75% of the total difference. Dose proportionality for MeCbl is said by various studies to be up to 3000-5000mcg absorbed, and then a second tier at =>7500mcg injected SC my my own trials and those of others who were also injecting.

- Is this good as a guideline for my minimum dose ultimate goal? Or do you think this should be more individualized?

I think that there is a "sweet spot" for widespread generalized healing on each of 6 or so layers that can be homed in on via customization. I have seen NOTHING at all that suggests that those doses are a good guideline for anybody. For instance I have never seen more than 1000mg of TMG matter to anybody. I have seen a lot trouble caused by bad balances for any given person. By body was breaking down for decades. I've done about 5 years of healing in the last 11 due to loosing that sweet spot over and over for various reasons.

 

[brenda]

@Freddd my son wants to try your protocol. He is waiting for Douglas Labs b's and I have some Jarrow mcblm left in the glass bottle a bit out of date but it seemed active last time I took it and I gave him my alcar. .

He suffers very badly from depression and anxiety from excitotoxiciy (plus cfs) and has been considering taking Picamilon http://en.wikipedia.org/wiki/Picamilon but I said hold off till I speak to you. Naturally he is worried that starting the protocol will increase his anxiety off the roof.

 

[finalgates]

hi.i started adenosylb12 10mg a day and 1g carnitine fumarate a day.after 9 days i started coq10 pycnogenol and taurine.and i immedietelly stopped the last 3 because i had sudden increase in heart rate,depression,fever.after 1 week i still have all this.so is this adb12 and carnitine start up?so can i start coq10 pycnogenol and taurine again?but is fever a common start up response?i dont think i have seen fever again mentioned.

 

[Freddd]

hi.i started adenosylb12 10mg a day and 1g carnitine fumarate a day.after 9 days i started coq10 pycnogenol and taurine.and i immedietelly stopped the last 3 because i had sudden increase in heart rate,depression,fever.after 1 week i still have all this.so is this adb12 and carnitine start up?so can i start coq10 pycnogenol and taurine again?but is fever a common start up response?i dont think i have seen fever again mentioned.

HI Finalgates,

CoQ10 is a problem for a lot of people in the first year of healing. I can cause very high blood pressure 190-200 or worse over 110 or whatever. It is dangerous. I don't know about pycnofenol or taurine. Were is the MeCbl and l-methylfolate?. They are the other half which usually relieve depression. Fever, with other symptoms is often present with methyltrap, which it take MeCbl and Methylfolate to get out of normally.

 

[Freddd]

@Freddd my son wants to try your protocol. He is waiting for Douglas Labs b's and I have some Jarrow mcblm left in the glass bottle a bit out of date but it seemed active last time I took it and I gave him my alcar. .

He suffers very badly from depression and anxiety from excitotoxiciy (plus cfs) and has been considering taking Picamilon http://en.wikipedia.org/wiki/Picamilon but I said hold off till I speak to you. Naturally he is worried that starting the protocol will increase his anxiety off the roof.

HI Brenda,

How old is he, what body weight? What symptoms and especially what symptoms of excitotoxicity? Include bloody nose, streps, etc. Anxiety is a deficiency symptom of the whole set of these things, among other things.

 

[finalgates]

HI Finalgates,

CoQ10 is a problem for a lot of people in the first year of healing. I can cause very high blood pressure 190-200 or worse over 110 or whatever. It is dangerous. I don't know about pycnofenol or taurine. Were is the MeCbl and l-methylfolate?. They are the other half which usually relieve depression. Fever, with other symptoms is often present with methyltrap, which it take MeCbl and Methylfolate to get out of normally.

thanks for answer.i use 3mg enzymatic 30minutes before shallowing and 8mg methylfolate.and 800mg same and 2g tmg

 

[finalgates]

ubiquinone never did a problem for me.but this time i used ubiquinol.when you say coq10 you mean ubiquinol?the active form?