B-12 - The Hidden Story

[picante]

What is it in this disease??? That so many "protocols" enter with a bang and go out with a whimper?

One of Freddd's many answers to this question:

A major problem has always been the complicated nature. I haven’t found a way of simplifying things and still have it work. In fact as more of the roadblocks are figured out, the more complicated. Nutrition is complicated , especially since most of the research is based on people with folic acid and CyCbl in their diets. I’ve spent over 25,000 hours since 1978-79 when I started working on figuring this out. And the sum of all the alternate pathways and comorbidities is unknown. It is quite complicated and there are not any simple solutions that I know of that work.

Not everyone has a clear symptom cause and effect, not everyone has the skill (or cognitive ability) to interpret symptoms and put it altogether to unwind the tangled web of this illness, even if you reject the detox argument (which I largely do).

There is a list of 15 reasons in the same post, under this heading:

THE 95% REASONS B12 AND FOLATE THERAPIES FAIL

Numbers 11-15 have given me the most trouble, particularly the B vitamins. It has been really tricky identifying deficiencies, finding forms I could tolerate, and titrating to the right dose (which can change).

If Freddd hadn't been so bloody persistent with these details, I really wouldn't have a clue what to do. His persistence has inspired mine.

Just to give an example, the latest adventure in my saga (the vitamin B3 chapter) has made my low-back arthritis return after a year: http://forums.phoenixrising.me/inde...ion-by-niacine-niacinamide.36454/#post-645078

What have I learned from this?:
1. At this time, the factor blocking my ability to tolerate MeB12/AdB12/Mefolate has been a need for more B3.
2. By titrating up with B3, my cognitive function returned to normal. This answers the question of why it went downhill last December while I was taking the B12 oils.
3. Just because I've added in 85 mg of B3 doesn't mean that it's enough for me. Despite what other people are taking. This is a principle I'm having to learn over and over.
4. There must be an interaction between B3 and potassium: the more deficient I am in B3, the more potassium I have to shovel in to tolerate increases in methylation levels. (I experience these increases just from taking B2, BTW.)

 

[ltpitt]

Hi,
I'm fairly new here (despite having CFS for about 15 years) and I had a couple of questions regarding Freddd's methylation protocol. I started doing Rich's protocol a couple of months ago. It made me feel awful but seeing as i was basically bed ridden anyway there wasnt that far to fall. However, since then I've stumbled upon this forum and Freddd's protocol and I'm hoping this might be the answer. I have trolled the forum but I am having trouble finding a clear outline of exactly what is necessary for Freddd's protocol, i.e. in terms of doses and what supplements in what forms are necessary there seems to be quite a bit of variation. I have read up on the paradoxical folate deficiency and the deadlock quartet so is it just a matter of taking ever increasing doses of the four things mentioned in the deadlock quartet plus the essential cofactors until symptoms improve? Sorry i know i am probably frustratingly uninformed, reading through these posts you all sound like serious experts. im also a little confused by how different rich and freddd's protocols are. rich's is said to have a very high success rate yet it suggests such significantly smaller doses? also does anyone know, in terms of avoiding the wrong kinds of folate, if 5-methyltetrahydrofolate and methylfolate are the same?
Thankyou.

 

[ahmo]

@ltpitt There are several links in my signature to Freddd's Protocol. Long, short, and supplementary versions. The 2 folates you list are the same. There's another site which is more of a comparison of Fred and Rich's protocols, http://howirecovered.com/active-b12-therapy-faq/#

I was afraid of Freddd's Protocol for a long time, reading all Rich's warnings. But Rich's SMP did not work for me, over several years. FP returned me to the land of the living. I and some others have found it necessary to build up to rather high doses, and then there seems to be a point of saturation and less is needed. Welcome to pr

 

[ltpitt]

@ltpitt There are several links in my signature to Freddd's Protocol. Long, short, and supplementary versions. The 2 folates you list are the same. There's another site which is more of a comparison of Fred and Rich's protocols, http://howirecovered.com/active-b12-therapy-faq/#

I was afraid of Freddd's Protocol for a long time, reading all Rich's warnings. But Rich's SMP did not work for me, over several years. FP returned me to the land of the living. I and some others have found it necessary to build up to rather high doses, and then there seems to be a point of saturation and less is needed. Welcome to pr

Thankyou for your help.
I have looked at the information and am pretty sure i understand the basics. the plan, after getting your cofactors sorted, is...
1. start with MeCbl daily in increasing doses
2. be ready for low folate and/or potassium and take as much of those as you need to relieve symptoms starting small and working up
3. add in AdoCbl weekly in increasing amounts (im less sure about this as ive also found posts that say daily is better?)
4. add in l-carnitine in increasing doses
5. keep doing that till you get to 15/20 mg of MeCbl and 10 mg of AdoCbl
6. CNS Penetration? - Im confused about the CNS penetration test. i understand this is supposed to reveal whether you have an issue with getting MeCbl/AdoCbl into the CSF but im not sure what results are expected in order to confirm/negate this? i.e. if you take it and nothing happens you can assume you do not have a problem but if you take it and ???? happens you do? what is expected to happen and how do you correct/treat this issue? im also unsure what the dose is. i read it was 50mg for MeCbl is this correct? is it the same for AdoCbl?

also a couple of additional questions
1. once you reach and are stable at the maximum dose (assuming the CNS penetrative test is ok) what then? do you continue the high dose forever? take a lower maintenance dose?
2. how long does it typically take people to get to the max dose? i.e. months, years, too varied to say?
3. are sublingual doses ok or are injections better/necessary?
4. ive only been on these active b's a short time but i seem to be able to tolerate a fast increase and feel better with each larger dose as long as i also take increasing amounts of methylfolate and potassium. is there a minimum amount of time that should be spent at each dose increment or can you just keep going until you hit the max?
5. im a bit unsure when to add SAMe, TMG, and other B's are these cofactors or things you add in only if you get stuck/stop improving?

thankyou to anyone who takes the time to reply to this it is greatly appreciated.

 

[ahmo]

CNS Penetration? - Im confused about the CNS penetration test. i understand this is supposed to reveal whether you have an issue with getting MeCbl/AdoCbl into the CSF but im not sure what results are expected in order to confirm/negate this? i.e. if you take it and nothing happens you can assume you do not have a problem but if you take it and ???? happens you do? what is expected to happen and how do you correct/treat this issue? im also unsure what the dose is. i read it was 50mg for MeCbl is this correct? is it the same for AdoCbl?

Are you having nervous system symptoms? I did, including long-standing insomnia. At a certain point, my tremors and uncertain gait disappeared; eventually I became totally free of insomnia, for the first time in my life. I can't think of anyone here using 50mg B12. Except that, there are many people using injections, so they might be on high doses. @whodathunkit has a lot of experience of injection and sublingual.

also a couple of additional questions
1. once you reach and are stable at the maximum dose (assuming the CNS penetrative test is ok) what then? do you continue the high dose forever? take a lower maintenance dose?
2. how long does it typically take people to get to the max dose? i.e. months, years, too varied to say?
3. are sublingual doses ok or are injections better/necessary?
4. ive only been on these active b's a short time but i seem to be able to tolerate a fast increase and feel better with each larger dose as long as i also take increasing amounts of methylfolate and potassium. is there a minimum amount of time that should be spent at each dose increment or can you just keep going until you hit the max?
5. im a bit unsure when to add SAMe, TMG, and other B's are these cofactors or things you add in only if you get stuck/stop improving?

Many of us have found that we eventually needed less. Just over a year ago I was using 20mg B12. Now I'm using 2.5 MB12. Folate was up to 30mg, now 2mg (taking it sublingual means I need 1.2 of what I did by swallowing)

If you can progress w/o symptoms, go for it. Lucky you.

I think you should add in a low dose B complex, but you might not need the others.

I've used self-testing to move step by step down this path. Finding a method that allowed me to establish a rapport and build trust in my body's responses has been a boon.

thankyou to anyone who takes the time to reply to this it is greatly appreciated.

Your very inclusive and organized post made it easy to respond. Please add more spacing to make it easier for us to read.

 

[ltpitt]

Are you having nervous system symptoms? I did, including long-standing insomnia. At a certain point, my tremors and uncertain gait disappeared; eventually I became totally free of insomnia, for the first time in my life. I can't think of anyone here using 50mg B12. Except that, there are many people using injections, so they might be on high doses. @whodathunkit has a lot of experience of injection and sublingual.

ok great thanks

 

[suraj]

Hi All

i have read, Fredd telling Glutamine being dangerous and it flushes out B12.

i now understand all protein powders have some form of glutamine (L-Glutamine, Glutamic Acid, Glutathione (Reduced)) are all these the same. so we should not use any protein powders too .

Also have any one tried support of Detox formulas like

1. http://www.iherb.com/Thorne-Research-MediClear-Plus-32-4-oz-920-g/21103, or
2. Coffee Enemas

does any of the above make the start up ride smoother on Fredds Protocol.

 

[ahmo]

I used glutamine during my early years on Freddd's Protocol. I also relied heavily on coffee enemas, have written of my experiences, linked in my signature.

 

[ltpitt]

Hi

Ive been doing Freddd's methylation protocol and my main symptoms since starting are really rapid and strong heart rate, some palpitations and really blurry vision. The main cause of these symptoms seems to be the MeCbl.

Based on what I read I was prepared for negative side effects and felt determined to push through them however the heart rate issue is so bad, i.e. my heart is going so fast/strong and beating so irregularly, that i cant sleep through it. a few times ive even wondered if maybe i should go to the hospital (something i usually avoid at all costs).

Ive been reading that lack of methylfolate and potassium can cause unpleasant symptoms when starting b12 so ive been taking both of those along with all other recommended cofactors.

I was just hoping someone here would have some advice regarding whether this is normal/happened to others and if there is something i can take that might help it?

Thankyou.

 

[suraj]

Hi

Ive been doing Freddd's methylation protocol and my main symptoms since starting are really rapid and strong heart rate, some palpitations and really blurry vision. The main cause of these symptoms seems to be the MeCbl.

Based on what I read I was prepared for negative side effects and felt determined to push through them however the heart rate issue is so bad, i.e. my heart is going so fast/strong and beating so irregularly, that i cant sleep through it. a few times ive even wondered if maybe i should go to the hospital (something i usually avoid at all costs).

Ive been reading that lack of methylfolate and potassium can cause unpleasant symptoms when starting b12 so ive been taking both of those along with all other recommended cofactors.

I was just hoping someone here would have some advice regarding whether this is normal/happened to others and if there is something i can take that might help it?

Thankyou.

im neither a expert on this protocol. but my 2 cents.

i have gone through this phase of irregular heart beat. and i did land up in the hospital, the monitor showed me i was at 95+ to 100 beats and then drop to 75-80 and then up again to 100 over 2hrs.

i would suggest its potassium. mine was fixed with more potassium. Also i stopped coffee. ( coffee is diuretic) , which further flushes out electrolytes. Take care.

 

[suraj]

I used glutamine during my early years on Freddd's Protocol. I also relied heavily on coffee enemas, have written of my experiences, linked in my signature.

Thanks Ahmo for the reply.

i too have seen great results from Coffee enemas, but was scared to continue, while on Freddds protocol. Thanks for giving me the confidence to continue CE.

Also part of all the supp is FOOD. Freddd has mentioned we need balanced amount of protein ( amino acids ) carbs etc. so to complement this therapy i planned for All in one shake, which has multi Vitamins , Minerals, Protein, Fibers , MSM , Grape Seed Extract, Curcumin Extract etc ( Thorne - as they have all active forms of folate, B12 etc) .

But as any protein shake has some amount of glutamine, was concerned with it. looks it does not effect too much.

thanks once again

 

[picante]

Ive been doing Freddd's methylation protocol and my main symptoms since starting are really rapid and strong heart rate, some palpitations and really blurry vision. The main cause of these symptoms seems to be the MeCbl.

Based on what I read I was prepared for negative side effects and felt determined to push through them however the heart rate issue is so bad, i.e. my heart is going so fast/strong and beating so irregularly, that i cant sleep through it. a few times ive even wondered if maybe i should go to the hospital (something i usually avoid at all costs).

Potassium deficiency is very dangerous. This is very likely what you've got, from starting up MeB12. It's not something to just "push through":
http://forums.phoenixrising.me/index.php?threads/warning-low-potassium-is-dangerous.14410/

http://forums.phoenixrising.me/inde...tassium-is-dangerous.14410/page-7#post-430811

The second link above is a specific post: "Freddd's list". He has posted it in numerous threads, and this thread happens to be about low potassium (hypokalemia). He has categorized the start-up symptoms according to whether they are from lack of potassium or lack of methylfolate, plus a short list of symptoms that could indicate lack of both. I hope this helps.

Most people experience low potassium within 4-5 days of starting the B12 protocol. For me, it was low Mefolate I experienced first (on the 2nd day). I didn't get hypokalemia until about day 9.

 

[ltpitt]

Hi,
Thanks for this.

I have already been taking the recommended max amount of potassium but i see from reading these links that people starting up their methylation just tend to take as much as necessary based on symptoms and not worry so much about RDI so ive given that a go and the heart palpitations are improving.

My vision is still really blurry im wondering if this is just a case of things getting worse before they get better as this has been a symptoms ive had in the past or if maybe it could be an indication i need more methylfolate? Has anyone else experienced this?

I was also hoping someone on here might be able to shed some light on b12 doses. When Freddd's protocol says to aim for around 20mg of MeCbl does that mean take enough supplements to add up to 20mg (i.e. x4 5000 mcg) or do you need to take absorption into account i.e. a 5000mg sublingual MeCbl held under the for 45 mins might have a 50% absorption (i dont know the actual absorption rate) so you need to take x8 5000 mcg? Sorry this seems like a silly question because it seems like the obvious answer is 20mg supplemented but i cant find info on it anywhere and i keep wondering whether im doing it right.

Thanks

 

[picante]

I was also hoping someone on here might be able to shed some light on b12 doses. When Freddd's protocol says to aim for around 20mg of MeCbl does that mean take enough supplements to add up to 20mg (i.e. x4 5000 mcg) or do you need to take absorption into account i.e. a 5000mg sublingual MeCbl held under the for 45 mins might have a 50% absorption (i dont know the actual absorption rate) so you need to take x8 5000 mcg? Sorry this seems like a silly question because it seems like the obvious answer is 20mg supplemented but i cant find info on it anywhere and i keep wondering whether im doing it right.

Dear Itpitt, I don't know why no one else has chimed in yet today, but your posts are alarming, to say the least. HOW MUCH MeCbl and AdCbl are you currently taking, and how much Mefolate?

Stop everything and read sheclimber's summary, "My Understanding of Freddd's Protocol", available here as a PDF. It's the best short summary we've got. She's got it laid out in steps. Step 3 is:

Titrate B12s and adjust Methylfolate and Potassium to sufficiency as needed to eliminate deficiency symptoms.
This step can take months to years - DO NOT RUSH.

Following that is a nice chart, which makes it pretty clear that nobody knows how much they need when starting out.

That step comes after the "Supplement with Basic Cofactors". Until I saw her chart of cofactors, I was still missing some of them.

It would be quite dangerous to aim for 20 mg MeCbl after such a short time on the protocol, and it would explain why your potassium deficiency is extreme. You can also deplete certain cofactors very rapidly, and not have a clue which deficiencies you've induced. B1, B2, and B3 are very commonly induced deficiencies.

The "Do Not Rush" part is so you have time to figure out what's going on as you proceed. How about starting your own thread in the methylation forum and ask questions as you go? In your first post, tell us how much you are taking of which nutrients.

I just don't want to see you get thrown off the horse with your foot still in the stirrup.

 

[ltpitt]

Dear Itpitt, I don't know why no one else has chimed in yet today, but your posts are alarming, to say the least. HOW MUCH MeCbl and AdCbl are you currently taking, and how much Mefolate?

Hi,

Thanks. Yes sorry i wasnt clear im not currently taking or planing on taking that amount of b12 anytime soon. i just wanted to know if doses are based on absorption or supplement amount.

I have read that summery of freddds protocol plus many other threads on here. im not trying to go too fast ive been increasing my doses over the past 7 weeks. at the moment im on 4000 mcg of MeCbl, 800-1600 mcg of methylfolate and 1000 mcg of AdCbl. I also take jarrow b-right, potassium and a thorne multi that i found recommended somewhere on one of the methylation threads. is this still too fast?

i havent added LCF or SAMe yet as i wasnt sure when the right timing for that is.

Thanks for the help.

 

[Kathevans]

@Itpitt As to your earlier mention of watery eyes--indeed I have them and they do get worse when I increase methylation protocol. Because they were also dry and scratchy at night, I went to see an opthalmologist who said the problem, from the nighttime perspective was dry eyes. Her recommendations are included in an eye thread I started here: http://forums.phoenixrising.me/inde...oms-from-methylation-supps.39971/#post-647665

There are other eye threads as well and I know I've read more than once about the watery eyes stuff. I'm hoping that as I adjust to methylation, this particular symptom will dissipate.

As to the B-12 and Folate, I just thought I'd mention that I have only begun this protocol myself, that is the B-12 and Folate, and my process has been fairly slow, but satisfying in retrospect because I have been able to make some progress. As a side note, when I first started B-12, before stopping a B-Complex and stabilizing myself with some of the cofactors, I ended up in the ER with atrial-fibrillation and this was with only 1/16 of the B-12 up under my lip. Heart issues are common.

Once I got off the B-Complex, I began again with only B-12, again in August with 1/16th, and worked up gradually--interestingly, it seemed that it was as my body requested it because whatever I'd been taking for a week or two began to no longer work. For my genetics (see my signature) it seems to be important for me to always start an increase with the B-12. I'm now at 1.25mg/ day--all in the morning, btw, or my sleep suffers at night, and only 400mcg of Folate. Twice in the last week I've had amazing sleep--one night up and down every hour and a half, but a total of about 6 1/2 hours; and another time, two segments of 3 hours solid sleep with an additional coda of 45 minutes in the morning, so again over 6 1/2. This may not sound amazing, but for someone who has been napping through the night and often unable to catch more than about 4-5 hours total, it feels miraculous. Approaching...!

As to the cofactors, some I had in place before I began--I'd taken some months a few years ago to increase magnesium levels--and this past spring I titrated zinc drops up to over 20 mg/day. Everything I add can initially affect my heart with irregular beats or palpitations, so i always go quite slow.

As to Potassium, I currently take 270 mg (1/2 teaspoon) of potassium gluconate powder at least 2x/day, morning and afternoon, and if my heart is fluttering in the evening, I take another dose around 9:00. I have also tried to increase potassium-rich foods to my diet, particularly squash and yogurt (can be as high as 450mg k/cup), where I hadn't allowed myself any dairy (except the occasional ice cream treat!). Bananas, of course, are terrific--if you can eat them (I can't!).

The other thing that has been really important for me is to really restrain myself and not do more than one thing a day--otherwise it's impossible to know what's causing what.

In this particular race, it's the tortoise who wins! At least with the least suffering.

Best of luck to you...

And btw, you people here inspire me, day by day.

Thank you.

 

[suraj]

Hi All

could any one tell why is it NOT BEST / NOT advisable to use SL B12 while falling asleep at night.

im having severe nerve pain/ anxiety/ irritation during day due to startup.

Also when is best time of day to take Adb12. as fredd says only one ( Mb12 or Adb12) should be taken at a time for best effectiveness.

 

[Tammy]

Hi All

could any one tell why is it NOT BEST / NOT advisable to use SL B12 while falling asleep at night.

im having severe nerve pain/ anxiety/ irritation during day due to startup.

Also when is best time of day to take Adb12. as fredd says only one ( Mb12 or Adb12) should be taken at a time for best effectiveness.

From what I have gathered........reading a lot of the posts on B12..........everyone is different in their response so it is really a trial and experiment for yourself. I have heard people taking b12 before bed because it helps them sleep.............others cannot do that. You said that you were having SEVERE nerve pain/anxiety/irritation due to start up. I would back down on the doses if that is the case.

 

[suraj]

From what I have gathered........reading a lot of the posts on B12..........everyone is different in their response so it is really a trial and experiment for yourself. I have heard people taking b12 before bed because it helps them sleep.............others cannot do that. You said that you were having SEVERE nerve pain/anxiety/irritation due to start up. I would back down on the doses if that is the case.

Thank you Tammy

I will now reduce the MB12 dose a little. Guess without AdB12 the MB12 increases anxiety for me.

Also from freddd i understand to keep RAISING THE BAR so i was trying to push my self with slightly higher dose. but now i will reduce and increase slowly. Thank u

with regards to timing of dose, i now remember fredds saying MB12 will help secrete Melatonin Serotonin and Dopamine etc for better sleep. so its advisable to take before noon. so was wondering, what if taken at night, while taking minimum dosage during day. sorry for chewing a little more.

 

[Kathevans]

Just fyi, still early days for me, now 1.5mg MeB12/600mcg Folate, either of these supps after lunch make my sleep worse. I'm thinking of trying again in a week or so and believe that eventually I'll be able to take more later in the day. For each of us, it's all experimentation. There are some who take the MeB-12 at night to calm down!