B-12 - The Hidden Story

[ahmo]

Like so many treatments, high dose b12 was a knock-out punch to my symptoms at first... then the results became progressively less dramatic. I still take it (Jarrow Methyl B12) and I think I do feel better for it... But the results today are decidedly an anticlimax, compared to the initial spurt of wellness I had in the beginning (of this b12 therapy). What is it in this disease??? That so many "protocols" enter with a bang and go out with a whimper?

I've been thinking about this phenomenon lately. Awhile back @alex3619 commented on the tendency of this illness to always revert back to some plateau (I'm sure he said it better) after improvements. On that thread I realized that my B12 and pyroluria protocols have, after 3 years, given me a physiology that's something life normal, for the first time in my life. I no longer suffer from the many noxious symptoms, need far fewer supps.

And yet...I accept that I'm at the point of addressing mitochondria, that I've done everything else . My physical and mental energies are very limited. But, responding to your comment, I feel as if my nervous system, my most vulnerable bit, just barely keeps the gains I've made. And they have been massive! As I'm typing, I'm thinking, maybe that's fine, maybe that's to be expected from a system that had been so overwrought for so long.

You say, What is it in this disease??? That so many "protocols" enter with a bang and go out with a whimper? Maybe it is about the mitochondria? Obviously I have no answer to the question, as you can see, I changed my mind midstream above.

As for B12 and folate specifically, I'm now down to a fraction of what I 'd gotten to a year ago. My sense is that I reached a saturation point, and also have the correct cofactors, detox, so that I no longer need so much.

 

[Azrael]

5mg Jarrow as a minimum?? Which list have you been looking at? Enzymatic Therapies is still the best rated. If/when you need higher doses, I used Country Life 5mg. Some others reported that it dissoved too quickly, but not for me. I guess others are using the Jarrow, I'm not sure.

When this disappeared from iherb, I went to mfg site. It seems to still be on the market, just not iherb. I switched to Source Naturals.

I been looking at the 2nd post of this thread Cort as poster. But it is no big deal. I completed an order today for both jarrow and country life, mb12 + adenosylb12. Will be interesting to see what it can do, I will have to test these new chemicals carefully as they are quite a lot stronger than what I been taking last months. Thanks for your feedback

 

[Azrael]

Like so many treatments, high dose b12 was a knock-out punch to my symptoms at first... then the results became progressively less dramatic. I still take it (Jarrow Methyl B12) and I think I do feel better for it... But the results today are decidedly an anticlimax, compared to the initial spurt of wellness I had in the beginning (of this b12 therapy). What is it in this disease??? That so many "protocols" enter with a bang and go out with a whimper?

I guess when different paths starts to get a nutrition boost other paths connected may not be able to keep up for various reasons. That's one of the reasons anyway I believe, correct me if I'm wrong. That's why some of these protocols are supposed to be working very broad and cover the most important paths in the methylation cycle.

 

[MikeV]

I realized that my B12 and pyroluria protocols have, after 3 years, given me a physiology that's something life normal, for the first time in my life. I no longer suffer from the many noxious symptoms, need far fewer supps.

that's encouraging to hear.

For awhile it was the same for me. I have no doubt that the b12 has helped me... it dramatically increased my energy and normalcy when I started it last November... so much so that I got way over-confident and pushed myself in to a major CFS relapse in May. I'd started to think of the b12 as my magic bullet/ CFS cure... but it is not all powerful; I am still in relapse

 

[ahmo]

@MikeV sorry to hear about your relapse. This seems to be something we nee to be really vigilant about, not overdoing.

 

[Azrael]

I'm going to try the hydroxy option as well. Is the product by AOR good for 2015 ? If you know a better one let me know please.

 

[Marc_NL]

Hi all

I’m planning to do a Methylation Protocol, first Rich’s for three months to see how it goes, then slowly fit in some of the things of Freddd’s protocol to find out which one suits me better.

Before I start I will do the Methylation Pathway at the European Laboratory of Nutrients (ELN) here in the Netherlands.

I have two questions:

- if I do this test, does it make sense to also test for homocysteine and methylmalonate or are they no longer relevant if the Methylation Pathway is done? Can the values of homocysteine and methylmalonate be extracted from the Methylation Pathway?

- I see that Adenosine is not tested in the Methylation Pathway but Rich talks about it in his Interpretation of the Methylation Pathways Panel (2011):
http://phoenixrising.me/treating-cf...esults-of-the-methylation-pathways-panel-2011
Why is this not in the Methylation Pathway? Is this less important?

I hope someone can help me with this (specially with the first question) because I need to decide on this today.

 

[ahmo]

@Marc_NL You might have already decided by now...If it doesn't cost you much, get the tests. If it does...I've proceeded with almost no testing. The tests I did prior to starting methylation protocol were never indicative of how unwell I was, nor give any direction to follow. I know my homocysteine must be good now because the rest of me is good. That sounds glib, but the transformation in my health since I've been on Freddd's Protocol shows me how unwell, deficient I was all my life. cheers

 

[Marc_NL]

Thanks ahmo, yes I've sort of decided to also do the homocysteine and methylmalonate, though I think it does cost much. I think it's my only chance to see the complete picture now that I've not started a Methylation protocol yet.

I took some aB12, mB12 and folic acid and stopped with it about four months ago (before I ever heard about Methylation) so that must be out of my blood by now I think.
By the way, I didn't notice any difference from these supplements but that's probably because the folate was missing?

 

[ahmo]

Yes, it's great to have baseline results.

By the way, I didn't notice any difference from these supplements but that's probably because the folate was missing?

Possibly. Also, if the B12 was swallowed, might not get absorbed. Good luck w/ starting the protocol.

 

[Marc_NL]

This was also sublingual, see here:
https://vitamineb12nu.nl/vitamineb12-behandeling-powerpakket.php
sorry, it's in dutch but you might get the idea, any way high enough doses

Since I already took the aB12 and mB12, does this mean that since I got no adverse effects that it is not really necessary for me to begin with hB12?
I already bought the hB12 but I might be able to switch over quite soon to the active B12's.

 

[ahmo]

Since I already took the aB12 and mB12, does this mean that since I got no adverse effects that it is not really necessary for me to begin with hB12?

If I were you, I'd go w/ Methyl. The following comes from Guide to Freddd's Protocol, 2nd link in my signature.

http://forums.phoenixrising.me/index.php?threads/short-term-relief-from-b12-shots-real- relief-or-placebo.27064/#post-416371
HyCbl is a pseudo vitamin. It is 1% as effective as MeCbl and AdoCbl. If you want neurological healing, these with L-methylfolate and L-carnitine fumarate plus other cofactors are the answer. I speak from massive experience.

http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and- healing.21725/

HyCbl typically will make 50%-90% of the active b12 deficiency symptoms worse over some months and makes startup worse when it happens when a person finally gives up on this pseudo vitamin. It never fulfills the full need for either AdoCbl or MeCbl. It is approximately 1% as effective as AdoCbl and MeCbl, if you are lucky. The neurological symptoms will keep worsening until they destroy your life. It is a horrid thing to continue to have neurological damage or even worsen it by taking HyCbl or CyCbl. One study of older people diagnosed with Alzheimer’s found that 41% of the people so diagnosed, in the study actually had b12 deficiency dementia. B12 deficiency in the long run makes for irreparable damage to your brain and spinal cord.

Megaloblastic madness (psychosis caused by b12 deficiency damage) is the “most florid psychosis known to man”. Of course nowadays, they stop the enlarged red cells with HyCbl or CyCbl while the brain continues to deteriorate. One doesn’t even get the warning of high MCV. Anyway, with the alert changed form > 93 to > 100 or 102 over the past 15 years thereby enshrining one of the early warnings as “normal”. This is in a population in the USA that has most of the population eating “fortified” foods with CyCbl and Folic acid. Instead of preventing FMS/ME/CFS the frequency is much increased. If these things could work, (and HyCbl is only marginally more effective than CyCbl) they would have already. Instead we see the opposite.

http://forums.phoenixrising.me/index.php?threads/symptoms-by-deadlock-quartet-and- other-nutrients.27482/

So when asked why don’t HyCbl and CyCbl work well it’s because they are not what our biochemistry evolved to use over hundreds of millions of years starting before mammals even existed. We did evolve a starvation mode of survival in which some of the previously used cobalamins that had become unusable throwaway forms after MeCbl breaks down or detoxifies cyanide and reclaim them. As with other work around methods it isn’t very effective and it doesn’t provide enough active cobalamins to do any major healing but it is enough to stay alive during a famine or a bad winter. It does require the presence of some reduced amount of each MeCbl, AdoCbl, l-methylfolate and l-carnitine fumarate to provide the needed biochemistry to fuel the conversion, allowing the body to tread water for a while.

WHY ARE THERE ALL THESE COBALAMIN A, B, C, D, ETC DISEASES?

These are the cataloging of all the ways our bodies didn’t evolve to use HyCbl and CyCbl. These gene variations never got culled out of us by disease and death in a natural environment. Those that had these enzymes might survive starvation better as they can use some trace cobalamins, but not enough difference to cull out those that don’t. General starvation isn’t selective enough. So many people don’t have the enzymes needed to transform trace cobalamins that the body creates from MeCbl for special purposes or post use or breakdown products, to recycle them for a workaround for starvation for a while. Some have even suggested that the lethargy of metabolic shutdown (seasonal CFS) achieved by AdoCbl/MeCbl starvation allowed early humans to survive long winters of semi starvation with very low food requirements substituting for true hibernation or winter sleep.

 

[Marc_NL]

If I were you, I'd go w/ Methyl. The following comes from Guide to Freddd's Protocol, 2nd link in my signature.


http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and- healing.21725/

http://forums.phoenixrising.me/index.php?threads/symptoms-by-deadlock-quartet-and- other-nutrients.27482/

Thanks ahmo, you are very helpful, these protocols are so confusing. There are so many names for the same thing and then different names in different languages.

Does it mean that in this point in time only the protocol that Freddd suggested is advised?
Nobody in favour of Rich’s protocol? (Maybe I better ask in the other thread )

What I was reading from the older comments some people benefit from one and other benefit from the other.

I was planning to try both and start with Rich’s protocol, I even bought all the ingredients so hopefully I can still use these (expensive !!).
I was able cancel my order for hB12, I have read somewhere that Rich said you can also use his protocol with the mB12 instead of the hB12

Here is how I see it now:

-1- Start with the Yasko All In One Multi, start with 1/day and raise to 4/day
-2- add in the Nutricology NT Factor EnergyLipids (how much of this?)
-3- start low with mB12 and raise up to 2000 mcg
-4- start low with both Source Naturals Megafolinic and Solgar Folate (Metafolin) and raise both to 200 mcg (or maybe 150 mcg because the All In one also contains a little of both if I understand correctly)

After two or three months try some tweaks and see if there is any difference:
-5- try with and without the Folinic Acid
-6- add some Potassium
-7- leave out the All In One
-8- add some aB12 once or twice / week
-9- later try with higher doses of the active B12’s and Solgar Metafolin
-10- make some final adaptations to end up with Freddd’s protocol

After each step wait a bit and notice if there is any difference.
By the end I should be able to have a feeling of what works and what doesn’t.

Some final questions
- Is L-methylfolate the same as Metafolin?
- do people normally adjust their protocol depending on the results of the Methylation Panel, homocysteine and methylmalonate or is this just for information?

 

[ahmo]

Does it mean that in this point in time only the protocol that Freddd suggested is advised?
Nobody in favour of Rich’s protocol? (Maybe I better ask in the other thread

I don't even think you can say that the Freddd protocol is advised. I endorse it because it's worked brilliantly for me, and Rich's did not. But there are others for whom Rich's works. Might be worth looking at this site by another pr member, it puts the 2 protocols in a FAQ format.

After two or three months try some tweaks and see if there is any difference:

You should be wtching your symptoms daily. I found my symptoms varied from morning to evening, depending upon folate levels.I have no suggestions re NT Factors dose.

- Is L-methylfolate the same as Metafolin?

Yes

do people normally adjust their protocol depending on the results of the Methylation Panel, homocysteine and methylmalonate or is this just for information?

Some might. I haven't tested, just use symptoms and self-testing, like kinesiology.

 

[Marc_NL]

Might be worth looking at this site by another pr member, it puts the 2 protocols in a FAQ format.

Yes, I'm actually reading this right now, even though this is supposed to be the short version of this thread, still quite a read

 

[chiefrocka]

Could your body be wanting electrolytes? Are you using K+? You might do better with an electrolyte mixture, better absorption.

http://www.livingnetwork.co.za/chelationnetwork/food/electolyte-mix-home-made/

http://forums.phoenixrising.me/index.php?threads/electrolyte-drinks-suggestions-recipes.15133/

On this thread someone links to the classic CFS suggestion, but also a few other ideas.

http://www.dfwcfids.org/healing/gokhmbrw.htm

Thanks...I tried electrolytes with no success. An entire bottle of pedialite did nothing, still waking up thirsty. So last week I decided to cut off Methyl B12 and Jarrows B complex and switched to Perque Hydroxy B12.

It's been a few days and so far the thirst and dehydration has disappeared and I'm sleeping normal again. I must not tolerate Methyl B12 well...I spent weeks on it with the same thirst issues and insomnia so I'm hoping Perque is better for me.

I also think the B Complex contributes as well but not completely sure why...as Jarrows also has Methyl B12 but I experienced similar issues on Solgar 50mg B complex.

 

[chiefrocka]

I was curious if anybody has experimented with a post-workout supplement combination that can prevent or lessen the post-exertional malaise/fatigue most of us have?

When things are going good I have energy right up until I'm done working out then I experience a slight crash. I was thinking to try 400mcg of methylfolate and half a perque immediately after my workout and see what happens.

 

[prekdw]

Thanks ahmo, you are very helpful, these protocols are so confusing. There are so many names for the same thing and then different names in different languages.

Does it mean that in this point in time only the protocol that Freddd suggested is advised?
Nobody in favour of Rich’s protocol? (Maybe I better ask in the other thread )

What I was reading from the older comments some people benefit from one and other benefit from the other.

I was planning to try both and start with Rich’s protocol, I even bought all the ingredients so hopefully I can still use these (expensive !!).
I was able cancel my order for hB12, I have read somewhere that Rich said you can also use his protocol with the mB12 instead of the hB12

Here is how I see it now:

-1- Start with the Yasko All In One Multi, start with 1/day and raise to 4/day
-2- add in the Nutricology NT Factor EnergyLipids (how much of this?)
-3- start low with mB12 and raise up to 2000 mcg
-4- start low with both Source Naturals Megafolinic and Solgar Folate (Metafolin) and raise both to 200 mcg (or maybe 150 mcg because the All In one also contains a little of both if I understand correctly)

After two or three months try some tweaks and see if there is any difference:
-5- try with and without the Folinic Acid
-6- add some Potassium
-7- leave out the All In One
-8- add some aB12 once or twice / week
-9- later try with higher doses of the active B12’s and Solgar Metafolin
-10- make some final adaptations to end up with Freddd’s protocol

After each step wait a bit and notice if there is any difference.
By the end I should be able to have a feeling of what works and what doesn’t.

Some final questions
- Is L-methylfolate the same as Metafolin?
- do people normally adjust their protocol depending on the results of the Methylation Panel, homocysteine and methylmalonate or is this just for information?

Hello,
Several years ago I put my entire family (5) on Rich's protocol for 6 months. Results= Zero.
Then I put everyone on Fredd's protocol and within 3 days we could tell things were changing. Since I've done both
I wouldn't waste my time on Rich's protocol. Fredd's protocol is the real deal! Lots of luck

 

[Marc_NL]

Hello,
Several years ago I put my entire family (5) on Rich's protocol for 6 months. Results= Zero.
Then I put everyone on Fredd's protocol and within 3 days we could tell things were changing. Since I've done both
I wouldn't waste my time on Rich's protocol. Fredd's protocol is the real deal! Lots of luck

That's an exceptional outcome, thanks for sharing.
I already started the Rich protocol (but with the mB12 instead of the hB12 so I guess it's kind of a hybrid protocol ) because I wanted to try both anyway, looking at the polls there doesn't seem to be much difference and what works for one doesn't work for another.

From what I read here I also think there is a bit more chance with Freddd's protocol but I think it's easier to go that direction than the other way around, also I don't want to wait six months to change but two or maximum three months.
Even if I would start with Freddd's and it worked for me I would still be curious to see if the other would work even better but if either of them would make only a partial improvement it would already be a big win for me.


How long ago did you start with Freddd's and is it still working for you and your family?

 

[prekdw]

That's an exceptional outcome, thanks for sharing.
I already started the Rich protocol (but with the mB12 instead of the hB12 so I guess it's kind of a hybrid protocol ) because I wanted to try both anyway, looking at the polls there doesn't seam to be much difference and what works for one doesn't work for another.

From what I read here I also think there is a bit more chance with Freddd's protocol but I think it's easier to go that direction than the other way around, also I don't want to wait six months to change but two or maximum three months.
Even if I would start with Freddd's and it worked for me I would still be curious to see if the other would work even better but if either of them would make only a partial improvement it would already be a big win for me.


How long ago did you start with Freddd's and is it still working for you and your family?

First let me say I've been on the hunt for 27 yrs. I could fill a room up with medical books that I've read. We have been doing Freddd's protocol for a little over 2 months. We have done Cutler's protocol (every 3 hrs- 10 months) Shoemaker's complete mold protocol ($$$) are all on Thyroid meds ( between 6-8 grains of desiccated thyroid- to regulate temp) Hydrocortisone - low dose for Adrenals. All have shown high serum levels of B12 as well as low vitamin D (25) unless we supplement. One son has low HDL (32). Sometimes I wonder if all of our problems, including mold could be caused by low methylation (low folate/ low B12)? We also had 11 family members do lab work, cyrex tests (array 3-4) heavy metal testing, to cross check to problems. Sure enough, most showed up with the same problems.
My immediate family (5) usually starts a protocol and since we've done many protocol's we tend to be able to ride the sick wave. Currently we are all taking 4-6 mg of methylfolate every 4-5 hrs during the day and all the rest of the Deadlock Quartet, including a 1 full L Carnitine, and 15 mg MB12 and active B12.(using all the right brands).
Update- All are coming down on Thyroid meds- constantly heating up, and are slowly removing the hydrocortisone. Sleep has greatly improved 7-9 hrs a night. Energy levels are slowly going up but we all notice that we can't watch violent movies before bed, otherwise we have dark dreams similar to heavy metal detoxing.