B-12 - The Hidden Story

[Freddd]

This post is really interesting however it is huge and taking me some time to get though. I have been taking mb12 sub lingual for 1 month and felt some boost from it early on however now when I take it I appear to be getting dizzy / light headed for several hours. I cant be 100% sure its the b12 but I am fairly sure it is.

I also take B complex with 800mcg folic acid

Any ideas?

Hi Xlynx,

Yes, I have some ideas. The effects you are having appear to be caused by your neurology actually starting to heal. There is no way your neurology can heal WITHOUT noticable effects. This may continue for several months and might increase and change with methylfolate instead of folic acid and adding adb12 might modify it as well. TMG may also moderate it the effect some. MB12 has the unique characteristic of promoting neurological healing. This can affect everything neurological and neuropsychiatric including moods, personality, sensations and the like. Sensory hallucinations that are present with deficiency can clear within hours sometimes depending upon how severe the underlying damage is. The "dizzy and lightheaded" is a generally a good sign with taking mb12. It's on the road to healing based on the expoerience of many.

 

[xlynx]

Hi Fred,

Thank you for mentioning that as I will soldier on with it then .

The information you give is really interesting and I am excited to receive my solgar methylfolate and my Jarrow b complex.

Can I ask how do you fit them in the day, do I take the b complex and folate together in the morning with the sublingual or split them through the day?

Also can I dive straight in and take them or do I need to break up the tablets. I did read about it but am a little confused as in one place it suggests breaking active folates to 1/1000th, sorry to ask when you explained so well (ill blame the fog)

My father has been very interested in this post as he has Peripheral neuropathy and has been gradually losing the feeling in his arms and legs for 20 years and has some major B12 deficiencies. I think you mentioned somewhere that this might be partially reversible?

Thank you so much for explaining

Jerry

 

[starcycle]

I am *really* weak and shaky today, with that feeling like you're so weak you're going to throw up and can barely talk. I have little doubt now that the b12 really does take a toll on the adrenals. Unless it's from this cold weather snap, there is no other reason I can see for this downturn except having taken the b12 for the past 2 days.

 

[Freddd]

Hi Fred,

Thank you for mentioning that as I will soldier on with it then .

The information you give is really interesting and I am excited to receive my solgar methylfolate and my Jarrow b complex.

Can I ask how do you fit them in the day, do I take the b complex and folate together in the morning with the sublingual or split them through the day?

Also can I dive straight in and take them or do I need to break up the tablets. I did read about it but am a little confused as in one place it suggests breaking active folates to 1/1000th, sorry to ask when you explained so well (ill blame the fog)

My father has been very interested in this post as he has Peripheral neuropathy and has been gradually losing the feeling in his arms and legs for 20 years and has some major B12 deficiencies. I think you mentioned somewhere that this might be partially reversible?

Thank you so much for explaining

Jerry

Hi Jerry,

I dove right in. You need to understand I was taking a b-complex and all the basics for decades including 1000mcg of cyanob12 daily. I started with 1mg of mb12 and made great progress in a month and ran out of the effective brand the next brand I tried being totally worthless. After find another brand that worked I made good progress the next month making it back to where I had been before the zero star brand and then started increasing amounts to 5000 and then pretty quickly to 20,000mcg a day. When I added adb12 I dove in with 3mg, had 2 days of startup and then it leveled out. I foundf 51mg aty one dose made a real difference but less than 40mg didn't make any difference over 3mg. When I added 800mcg of methylfolate all was well until I took glutamine and NAC and had a hard folate deficiency starting within hours and mb12 and adb12 within days and weeks respectively. It took 4800mcg a day to couteract the glutatathione precursor induced deficiency and then the adb12 and mb12 went back to working well too.

If you have lots of anxiety about startup symtpoms, titrate. If you take startup symptoms as confirmation of effectiveness dive right in. As these vitamins have a fast washout if you find it just too intense back off to about 50% but keep going and give you body a chance to catch up to that level before continuing. The startup symptoms basically consist of all your symptoms going crazy, some intensifying or being perceived as more intense, forms of symptoms changing, usually to earlier forms in the deterioration pattern and so forth. They may take a month or three to settle down. In my experience everything affected quickly also healed quickly.


I switched to 5000mcg a day injection for 3 years but that wasn't enough to reverse the numbness. I started experimenting and found 7.5mg in a single sc injection could make headway against the numbness for about 6 hours. I currently take 30mg a day and have ups and downs depending upon the speciofic batch of mb12. A year ago I had footdrop and was falling down, couldn't balance and couldn't feel position of my feet or feel my toes wiggle or anything like that. 30mg a day and I have about 50% of sensation back, motor control of my feet and toes and less clumsiness in my fingers. I redid a roof this past summer spending 60 hours working 3 stories up and nary a problem. I couldn't have done that a year ago.

 

[Freddd]

I am *really* weak and shaky today, with that feeling like you're so weak you're going to throw up and can barely talk. I have little doubt now that the b12 really does take a toll on the adrenals. Unless it's from this cold weather snap, there is no other reason I can see for this downturn except having taken the b12 for the past 2 days.

Hi Starcycle,

I can't tell you why you have the reactions you do. B12 does affect neurotransmitters and hormones. It tends to bring them back towards normal and after a long time of abnormality the body isn't used to that. It may be that you are having direct nervous system effects having to do with the startup of mb12 and nothing at all to do with adrenals. I was throweing up daily before I took the mb12. That was one of the things that cleared up in the first months. One of Adelle Davis's big things for adrenal support was liver (best mb12 source) and pantathenic acid. In my experience, the steps of healing progress through multiple steps of abnormality, including weak and shakey (convalescent as some might call it) as different parts of the 600 processes affected by deficiency start booting back up after years of shutdown. There is no magic here. Everything doesn't suddenly turn to normal all at once. Its a journey of 10,000 steps and each one is a different way of being wrong until the very last one. Many of the people who have healed have gone through such as you describe including me. I guess ignorance was bliss. I didn't assign it to anything but changes during healing and made nothing at all of it and didn't worry about all the changes that ocurred day to day. None of the things lasted very long. Like the weather it changed in a day or two and kept doing that. It was a roller coaster ride, lots of ups and downs and over the months the downs were not as far down and slowly various things dropped off the list of problems. As Sunday called it, I "turned a corner", lots of them.

 

[xlynx]

Hi Fred,

I ready to dive right in, I like to feel recovery!

Wow I am amazed at how much you have achieved with B12. When you say 30mg a day by injection are there any side effects?, I have heard that B12 is non toxic and very safe but were would you say the max is?

Also how do you go about getting the injections, does a doctor have to prescribe them? My doctor is a little bit shy when it comes to injections, I have asked him for them already and he keeps stalling me but I have heard so many say they feel better on injections.

Thanks,
Jerry

 

[Freddd]

Hi Fred,

I ready to dive right in, I like to feel recovery!

Wow I am amazed at how much you have achieved with B12. When you say 30mg a day by injection are there any side effects?, I have heard that B12 is non toxic and very safe but were would you say the max is?

Also how do you go about getting the injections, does a doctor have to prescribe them? My doctor is a little bit shy when it comes to injections, I have asked him for them already and he keeps stalling me but I have heard so many say they feel better on injections.

Thanks,
Jerry

Hi Jerry,

Wow I am amazed at how much you have achieved with B12. When you say 30mg a day by injection are there any side effects?, I have heard that B12 is non toxic and very safe but were would you say the max is?

I would say that I achieve maximum effectiveness with 30mg. Larger doses don't appear to do any more. I have no side effects. My doc prescribes it. However, I find that the injections as a whole are less reliable than the sublingual 5 star brands as far as consistant effectivness from bottle to bottle. And a lot more expensive. If a person can heal everything with sublingual I think that is the preferred method. That is why as part of the BASICS I give a method to test for CNS/CSF effects from 50mg sinlge dose sublingual. It has an equivalent effectiveness to 7.5mg-10mg injection. If it doesn't do anything more for you than 10 or 20 mg a day sublingual, neither will injections in my opinion. Read up on that and the ZONES on the basics page and then lets talk about it more. You won't get results that you can trust by hurrying. You have to reach sublingual normal dose equilibrium first or you can't tell what is happening, and also have all the cofactors on board or again you don't know what happened.

 

[Sunday]

I'm just here to put in my empirical two cents' worth: the healing isn't instant, and it is a crazy ride, but I'm finding it worthwhile. I'm definitely different, and better, than I was 2 and a half months ago, when I started this. One of the most obvious ways I noticed this was that, recently, in an airport and a mall, when I thought about putting more speed in my walk I HAD it to put on. Impossible a few months ago. Also, just being in the airport or the mall, even briefly, without severe crashing afterward (tiredness, yes, but we all know that's different from crashing) was pretty amazing. And I am now able to read more than a few pages at a time.

Even in the worst of past startup reaction, I could notice things that were getting better, which had not gotten better under any other protocol. Something that I noticed even in my November and December of Hell (all crash, all the time) was that the peripheral neuropathies were still getting better, although the rest of me was unspeakable.

But. It is not an instant cure: Freddd is right when he says that there are many corners to turn. While I have pulled out of being constantly crashy, things continue to be a bit crazy: I still have to exercise in careful little bits, I have (lighter-quality) brainfog off and on, orthostatic intolerance, weird mood episodes (luckily I've had good training for those during the rest of my life : ) ). Maybe, like Freddd, my ignorance is bliss, and that's why I keep on, complaining and whining about the upheavals, but not letting them knock me off my course. It helps that there's an intuitive feeling that it's right: whenever I take the active B12s, it feels as if my cells are waking up, and while that doesn't always feel good, it does feel more alive. I just added selenium to my protocol, as well as going from 3mg to 4mg of mb12/day, and one or both of those things has knocked me on my behind pretty good. Yet certain basic things just feel better, which is what keeps me going on. I don't have the money to take the tests, so for me all that is a moot point: I'm just doing my best to adhere to this protocol for 6 months, then I'll reassess (and I already know I'll have more brainpower to reassess with).

In my own case I feel I have nothing to lose by forging on regardless, because while many of the things I've tried in the past have helped some, or helped temporarily, I have still dropped into the pit afterwards, in a discouraging reversal of everything I'd gained and then some. Unlike many of you, I don't seem to have the sensitivities to fillers or environmental pollutants, though I've always tried to keep those down. I also don't have underlying thyroid problems, (one of the few things I did test for) though it makes sense to me that B12 deficiency would lead to adrenal deficiency which in turn would lead to thyroid deficieincy. (Originally I thought I had adrenal depletion and took Standard Process hormone-free glandulars for both adrenals and thyroid. This helped, but only to a certain point, so my empirical experience backs up the idea that the B12 deficiencies are (in my own case) the upstream cause of endocrine system problems. If I'd already had an endocrine system problem, that would have muddied the waters a bit. In my own case it was clear that the thyroid and adrenal support wasn't getting to the bottom of the problem.)

Basically, this protocol is the best alternative I've found. It's the only one where I've found talk about recovery or cure, as opposed to management and mitigation. And that is why I believe it's worth suffering through the nausea, brainfog, weird little electric dirls, exacerbated nerve pain, orthostatic intolerance, wacky moods, odd internal twitches, and the whole jolly crew of symptoms: it offers me the best possibility for getting a life. (I can already see it will not be "getting my life back", but I can work with that to make it a good thing. I often wonder if some of the anxiety about the B12 startup weirdness doesn't come from a sense that we are turning into different people. We are, but we have some say in how that happens and what we turn into. It could be a good thing.)

 

[Freddd]

I'm just here to put in my empirical two cents' worth: the healing isn't instant, and it is a crazy ride, but I'm finding it worthwhile. I'm definitely different, and better, than I was 2 and a half months ago, when I started this. One of the most obvious ways I noticed this was that, recently, in an airport and a mall, when I thought about putting more speed in my walk I HAD it to put on. Impossible a few months ago. Also, just being in the airport or the mall, even briefly, without severe crashing afterward (tiredness, yes, but we all know that's different from crashing) was pretty amazing. And I am now able to read more than a few pages at a time.

Even in the worst of past startup reaction, I could notice things that were getting better, which had not gotten better under any other protocol. Something that I noticed even in my November and December of Hell (all crash, all the time) was that the peripheral neuropathies were still getting better, although the rest of me was unspeakable.

But. It is not an instant cure: Freddd is right when he says that there are many corners to turn. While I have pulled out of being constantly crashy, things continue to be a bit crazy: I still have to exercise in careful little bits, I have (lighter-quality) brainfog off and on, orthostatic intolerance, weird mood episodes (luckily I've had good training for those during the rest of my life : ) ). Maybe, like Freddd, my ignorance is bliss, and that's why I keep on, complaining and whining about the upheavals, but not letting them knock me off my course. It helps that there's an intuitive feeling that it's right: whenever I take the active B12s, it feels as if my cells are waking up, and while that doesn't always feel good, it does feel more alive. I just added selenium to my protocol, as well as going from 3mg to 4mg of mb12/day, and one or both of those things has knocked me on my behind pretty good. Yet certain basic things just feel better, which is what keeps me going on. I don't have the money to take the tests, so for me all that is a moot point: I'm just doing my best to adhere to this protocol for 6 months, then I'll reassess (and I already know I'll have more brainpower to reassess with).

In my own case I feel I have nothing to lose by forging on regardless, because while many of the things I've tried in the past have helped some, or helped temporarily, I have still dropped into the pit afterwards, in a discouraging reversal of everything I'd gained and then some. Unlike many of you, I don't seem to have the sensitivities to fillers or environmental pollutants, though I've always tried to keep those down. I also don't have underlying thyroid problems, (one of the few things I did test for) though it makes sense to me that B12 deficiency would lead to adrenal deficiency which in turn would lead to thyroid deficieincy. (Originally I thought I had adrenal depletion and took Standard Process hormone-free glandulars for both adrenals and thyroid. This helped, but only to a certain point, so my empirical experience backs up the idea that the B12 deficiencies are (in my own case) the upstream cause of endocrine system problems. If I'd already had an endocrine system problem, that would have muddied the waters a bit. In my own case it was clear that the thyroid and adrenal support wasn't getting to the bottom of the problem.)

Basically, this protocol is the best alternative I've found. It's the only one where I've found talk about recovery or cure, as opposed to management and mitigation. And that is why I believe it's worth suffering through the nausea, brainfog, weird little electric dirls, exacerbated nerve pain, orthostatic intolerance, wacky moods, odd internal twitches, and the whole jolly crew of symptoms: it offers me the best possibility for getting a life. (I can already see it will not be "getting my life back", but I can work with that to make it a good thing. I often wonder if some of the anxiety about the B12 startup weirdness doesn't come from a sense that we are turning into different people. We are, but we have some say in how that happens and what we turn into. It could be a good thing.)

Hi Sunday,

I'm definitely different, and better, than I was 2 and a half months ago, when I started this. One of the most obvious ways I noticed this was that, recently, in an airport and a mall, when I thought about putting more speed in my walk I HAD it to put on. Impossible a few months ago. Also, just being in the airport or the mall, even briefly, without severe crashing afterward (tiredness, yes, but we all know that's different from crashing) was pretty amazing. And I am now able to read more than a few pages at a time.

It's good to hear from you while it is happening because 6 years down the road when its all just a bad memory you will lose most of the detail like this. The healing is slow, even when it is fast. Like you I gained capacity slowly, and I too felt I had nothing to lose, I had already lost it all. A "normalizing of tiredness" happened to me in about the same time frame. Instead of being exhausted all the time and crashing if I did too much which was almost nothing, I could do much more and get genuinely tired but not exhausted.

I can already see it will not be "getting my life back", but I can work with that to make it a good thing. I often wonder if some of the anxiety about the B12 startup weirdness doesn't come from a sense that we are turning into different people. We are, but we have some say in how that happens and what we turn into. It could be a good thing.

My life didn't sit there waiting for me. I had to start over. And with all the neurological healing and neuropsychiatric healing I was a different person and I shaped things differently this time via different experiences. I am a very different person. It can be a good thing. There is a period when it is very easy to add new things and grow into them. It was very hard on my now ex wife as I became even less the "person she had married" as I recovered because not only did I have the damage and missing chunks. I had new things replacing the damaged and missing chunks that filled in differently.

Sunday, It sounds like you are indeed well on the road to actually healing. Excellent. Keep on trucking.

 

[winston]

Hi Sunday, I am so proud of you for sticking with this protocol even with the tiring nausea. You are my pace car and you are getting close to the finish line and I am just starting my engine. I started the protocol about the same time as you and didn't have severe start-up symptoms, I didn't have nausea. When I went through a horrible crash I couldn't stop the severe nausea so I quit, the worse thing I could have done. Now each time I try to start again the nausea starts. This time I am going at a turtle pace but it is easier to manage the nausea. Five weeks and I only made it through the B-right, folate, and 1 adb12. This week I hope to start crumbs of mb12. Hope your improvements continue and keep posting to let us know how you are doing.

Lena

 

[starcycle]

I'm just recovering from a few days on this protocol. It has caused a lot of liver area/gallbladder pain - whether it's damaged liver function or raised enzyes is unknown - worsened hypothyroidism, presumably through activating adrenal function, and cranked up the ocd/anxiety to high levels, which can take weeks/months to settle down again, if it does.

It's clear to me that this is another one of those ostensible "fixes" that, imo, takes an inappropriate "one size fits all" approach that can be very harmful. Fred himself has said he has had b12 problems since a youth, possibly genetically related, etc. What makes anyone think that will therefore apply to everyone else is unclear.

At the very least, it appears that the idea and practice of getting methylation pathways tested first as rich recommends is the wisest and safest course of action. Personally I don't think it's the smartest thing to just start pumping in high dose B12 without knowing specifically what you are supposed to be treating, and I have further doubts whether B12 itself can affect the immune aspect of CFIDS or treat CFS that is primarily immune related.

Just my experience and opinion, best of luck however to anyone who is trying it or having success with it. I hope it helps.

 

[Sunday]

Oh Lena, I would hardly say that I'm near the finish line, since I'm pretty crashy today. But everything I wrote yesterday is still true, and while it's discouraging not to be instantly cured , I really do feel that significant changes for the good are happening.

I'm really glad to hear you're starting the protocol at a pace you can manage - you are brave to try again after having such a hard time before. I've been wondering how you were doing. The important thing is to get well, how it goes will be interesting to see! I will say that acupuncture (when I've been able to afford it) has really helped my nausea, and so did/do lots of ginger tea and ginger chews. Of course the way it goes for me may not be the way it goes for you, but you might be encouraged to hear that I have had only intermittent nausea over the past two weeks. Before the B12 I was nauseated most of the time, and in the worst parts of B12 startup I was nauseated virtually all the time, so that's a significant change for me. Good luck! Keep us posted!


Starcycle, I understand that this protocol may not be for everyone: everyone seems to come to CFS/ME with their own individual constellation of symptoms and difficulties. It could well be that some situations make this protocol impossible. But I will respectfully point out that if you had read more of the thread, you would know that "one size fits all" is a very poor description for this protocol; there's a lot of discussion about cofactors which make all the difference for one person, and do nothing for another; doses that work for one person and not another. It is true of course that this protocol is based on the theory that active B12 deficiency is the root of a lot of neurological problems, including ours. But ya gotta base a protocol on something.

My own reading doesn't show this regime starting with high doses of B12; the high-dose test comes very far into the protocol, to see if you have any further damage that's not being addressed by the lower doses. There's a lot of discussion about titration, which is very different for everyone. As for knowing exactly what you are treating - unfortunately, none of us, including the medical experts, is in a position to know that.

What you experienced sounds to me like the startup symptoms Freddd has listed from some of the many folks he has walked through this regime (as well as from himself). I had those liver twitches, spleen twitches, and felt truly god-awful for weeks of startup, still having some of it, but I'm hanging in with it and tinkering with this regime because it has given me measurable results and a less measurable but welcome sense of being more "here". If these results last, it will be more than I've gotten from any other healing modality I've tried, and some of them have really helped. I intend to keep on with everything that helps.

If someone has underlying problems involving organ failure or other serious conditions, I'm sure that changes how they proceed with any protocol, including this one. It's not an easy regime, physically or psychically, and there are no guarantees. (On the other hand, I don't find CFS easy, physically or psychically, either.) But even if it only partly improves my situation I will consider it a success. I don't have the money for tests and doctors, and if I did I honestly don't trust most doctors for chronic illness, I have seen them do so much more harm than good, even in illnesses much more accepted and understood than CFS. I say this with apologies to the wonderful medical folk who come on here and are really interested in doing the research, paying attention to the patients, and giving us their considered opinion without pretending to know more than they do. That way we can all add to our knowledge. Dealing with CFS/FM is all one big experiment, there is nobody who really "knows". I think we all wish there were.

 

[starcycle]

It's not "startup symptoms," it's just intolerance for various reasons. The b12 is long gone now out of the system for many days now anyway, and yet the sx remain. In the main I believe they relate to neurotransmitter and neurobiological changes, also affecting adrenal function. You can call big puffy circles under the eyes every morning a "startup symptom," but those of us who know that's a hypothyroid symptom and that B12 taxes the adrenals know what's going on with that. It's not "startup," it's a worsening of that condition.

Yeah, read the thread, but it's 90 pages long of mostly extraneous material. Would be a lot more efficient to have all the salient information collated and put on a web page somewhere, or in a blog entry or something, or even a single sticky post rather than having to wade through 90 pages of text.

You point to co-factors, for example. Okay, what co-factors do I need? You don't know. Freddd doesn't know. The only way to perhaps know is to do testing, which is exactly what I think I said. ? Just pumping b12 in without knowing what you're doing or specifically attempting to correct is not very smart or recommended, imo. So yeah, to say worsening of a condition is a "startup symptom" and just keep going (which in general characterizes most of the answers I've seen, at least) is basically "one size fits all." So unless you can tell me precisely what co-factors I need to be able to tolerate the B12 without crashing the adrenals, thyroid, and worsening the ocd, it's not really a useful protocol for me or anyone with similar problems, imo, and I don't think it's very responsible to tout b12 as the sort of universal "cure all" as it's kind of been promoted here. I knew in general what to look for because I know of the taxing effects of b12 on adrenal function, but a lot of people are very desperate for a fix and conceivably could be harmed by taking these large b12 doses "blindly." I think that needs to be stressed more.

 

[lebowski]

"Just pumping b12 in without knowing what you're doing or specifically attempting to correct is not very smart or recommended"

recomended by who ? the mainstream medicine ? so i think u should go see a gp instead of losing ur time here .. "It's not "startup symptoms" oh sorry i think we have here one already ..

"So unless you can tell me precisely what co-factors I need to be able to tolerate the B12 without crashing the adrenals, thyroid, and worsening the ocd, it's not really a useful protocol for me or anyone with similar problems, imo, and I don't think it's very responsible to tout b12 as the sort of universal "cure all" as it's kind of been promoted here"

"unless you can tell me precisely " as if anyone has to do that , but ok , take prednisalone for crashing adrenals , some tiroxin sodium for ur thyroids and paroxetine for ur ocd .. just get them checked and if u need support someone will prescribe it to u if this is the missing part for u in the protocol ..

" as the sort of universal "cure all" as it's kind of been promoted here" if u take it this way i really think u should not do any protocol on ur own .. this is a serious missunderstanding problem which later may even cause u to use grams instead of miligrams and really kill u

someone here just telling his and other peoples good expiriences about high dose active 12s and etc .. no one is pushing or selling anything and has to prove you anything or owe u anything .. this is help or at least trial of help and the normal polite reaction to it is to say " thanks "

 

[starcycle]

"Just pumping b12 in without knowing what you're doing or specifically attempting to correct is not very smart or recommended"

recomended by who ? the mainstream medicine ? so i think u should go see a gp instead of losing ur time here .. "It's not "startup symptoms" oh sorry i think we have here one already ..

"So unless you can tell me precisely what co-factors I need to be able to tolerate the B12 without crashing the adrenals, thyroid, and worsening the ocd, it's not really a useful protocol for me or anyone with similar problems, imo, and I don't think it's very responsible to tout b12 as the sort of universal "cure all" as it's kind of been promoted here"

"unless you can tell me precisely " as if anyone has to do that , but ok , take prednisalone for crashing adrenals , some tiroxin sodium for ur thyroids and paroxetine for ur ocd .. just get them checked and if u need support someone will prescribe it to u if this is the missing part for u in the protocol ..

" as the sort of universal "cure all" as it's kind of been promoted here" if u take it this way i really think u should not do any protocol on ur own .. this is a serious missunderstanding problem which later may even cause u to use grams instead of miligrams and really kill u

someone here just telling his and other peoples good expiriences about high dose active 12s and etc .. no one is pushing or selling anything and has to prove you anything or owe u anything .. this is help or at least trial of help and the normal polite reaction to it is to say " thanks "

I'm just reporting my experiences, no need to get so defensive. I've been sick for over 10 years, have tried everything under the sun, every "miracle treatment" that every "guru" out there has promoted. I've seen a lot of harm done by these kinds of one-size-fits all "protocols," and I've come to learn the hard way that, for most people, there is no "magic bullet" cure-all.

The fact is that b12 taxes the adrenals. When a person has hashimoto's thyroiditis and can't tolerate thyroid hormone because of metabolic problems in CFS, and b12 just makes that worse, the responsible thing is not to say "those are just 'startup' symptoms, keep going." When a person has methylation defects, and pumping in b12 makes that worse, the responsible thing isn't to say 'those are just startup symptoms, keep going.' So these kinds of recommendations, without any testing at all, have to be taken with a grain of salt, imo. To say no one is recommending anything when there are entire discussions devoted to touting certain brands of supplements is a little disingenuous. Between the lines, we all know this protocol is being recommended. Everyone wants to be the "guru" who fixes everyone else with the thing that worked for them but which might be inappropriate for anyone else.

But like I said, if it's working for you, I'm glad to hear it. I hope you have continued success.

 

[Sunday]

Starcycle, Just wanted to mention that my understanding of the theory of this protocol is that, if you have B12 deficiency, you will have B12 reaction. So I am a little surprised that you adopted the protocol if you didn't agree with this basic premise. It seems to me that that's an essential part of the theory we're testing. I agree that this is a very long thread which does make it more complicated to be sure of the details (so glad it was on ly 27 pages when my brain-fogged mind first approached it), and it might be nice to somehow mark out the first 3 to 5 pages where the protocol, including that aspect, is laid out in the most condensed form.

I think we all get tired of hearing about that "one thing" that will finally do it for us, and it is upsetting when things don't work out the way we'd hoped. On the other hand, here we all are, checking around on this forum for things that have worked for others, hoping they will work for us. Have you checked out Ricnvank's Simplified protocol? That might be a better option for you, along the same lines, and he's good at explaining the connection between B12/methylation/entero-hepatic/endocrine systems.

Hope springs eternal! Hope you find a good solution that works for you.

 

[Freddd]

I'm just reporting my experiences, no need to get so defensive. I've been sick for over 10 years, have tried everything under the sun, every "miracle treatment" that every "guru" out there has promoted. I've seen a lot of harm done by these kinds of one-size-fits all "protocols," and I've come to learn the hard way that, for most people, there is no "magic bullet" cure-all.

The fact is that b12 taxes the adrenals. When a person has hashimoto's thyroiditis and can't tolerate thyroid hormone because of metabolic problems in CFS, and b12 just makes that worse, the responsible thing is not to say "those are just 'startup' symptoms, keep going." When a person has methylation defects, and pumping in b12 makes that worse, the responsible thing isn't to say 'those are just startup symptoms, keep going.' So these kinds of recommendations, without any testing at all, have to be taken with a grain of salt, imo. To say no one is recommending anything when there are entire discussions devoted to touting certain brands of supplements is a little disingenuous. Between the lines, we all know this protocol is being recommended. Everyone wants to be the "guru" who fixes everyone else with the thing that worked for them but which might be inappropriate for anyone else.

But like I said, if it's working for you, I'm glad to hear it. I hope you have continued success.

Hi Starcycle,

I think that your last few posts demostrate a profound misunderstanding of active b12s. Hashimoto's for instance, is known to be casued by B12 deficiency. However, as it is organ damage from autoimmune problems, just taking b12 after the fact does not cure Hashimoto's. Immune system failures and autoimmune problems run rampant in b12 deficiency states. Tissue breakdown of all kinds are common a frequent in b12 deficiency states. Adrenal malfunction results from b12 deficiency states. The whole hormonal system goes into failure with severe b12 deficiencies. B12 is not a magic cure-all of any sort. Healing takes months to years. Just taking b12 doesn't automaticaly correct all the damage. And the truth of the matter is that this active b12 protocol is at the bleeding edge. It is the advance of the art. It is not deeply researched. Most of the research about b12 asked poor questions about inactive b12s on a base of inactive vitamins.

Many of us here have already had our banks broken by decades of ineffective testing and scads of expensive treatments based on incorrect theories that ended up making us sicker or doing nothing. I had every test ever suggested by my docs. Not one of them ever got at the root problem. If you had ample b12 in your system for correct funtioning you would have no reaction at all to the active b12s, they would have nothing to do and would merely be rapidly excreted. With b12 "treating to test results" is ludicrous. Not one of the tests used to test for b12 or it's effects is predictive if active b12 will produce results. Your severity of responses is unusual. That in itself appears to say "extreme funtional deficiencies". As regards the cofactors, they are a complicating factor. It's what keeps it from being the simple or simplistic approach of a "magic bullet". Instead it points at breakdowns in several main areas; methylation and DNA replication, mitochondria production of ATP, nervous system functioning, immune system funtioning, blood cell production (DNA replication) and all tissue repair in the body. It affects the production of neurotransmitters and hormones. It affects mood, personality and cognitive functioning.

OF COURSE IT HAS A LOT OF AFFECTS AS IT STARTS UP hundreds of sdifferent reactions. Until they are ALL started up and working together all sorts of things are going to be ragged and uncoordinated with each other.

So unlike all of your magic bullet approaches that do nothing at all and so are a blank slates to project whatever you want upon them (placebo effect for instance), active b12s and folate plus cofactors can do a jump start of hundreds of things that have broken down all at once often exhausting other cofactors almost immediately. It strongly affects the nervous system with which everything affected is perceived. A lot of the startup goes through unpleasant phases and hundreds of transitory effects. Good luck in your testing. Hopefully you will find it useful in predicting what will heal you. I know of no testing that predicts who will get results with active b12s etc since all the tests appear to have been normed on borderline or worse deficient groups. Have fun and good luck on your adventure in healing.

 

[Freddd]

I'm just reporting my experiences, no need to get so defensive. I've been sick for over 10 years, have tried everything under the sun, every "miracle treatment" that every "guru" out there has promoted. I've seen a lot of harm done by these kinds of one-size-fits all "protocols," and I've come to learn the hard way that, for most people, there is no "magic bullet" cure-all.

The fact is that b12 taxes the adrenals. When a person has hashimoto's thyroiditis and can't tolerate thyroid hormone because of metabolic problems in CFS, and b12 just makes that worse, the responsible thing is not to say "those are just 'startup' symptoms, keep going." When a person has methylation defects, and pumping in b12 makes that worse, the responsible thing isn't to say 'those are just startup symptoms, keep going.' So these kinds of recommendations, without any testing at all, have to be taken with a grain of salt, imo. To say no one is recommending anything when there are entire discussions devoted to touting certain brands of supplements is a little disingenuous. Between the lines, we all know this protocol is being recommended. Everyone wants to be the "guru" who fixes everyone else with the thing that worked for them but which might be inappropriate for anyone else.

But like I said, if it's working for you, I'm glad to hear it. I hope you have continued success.

The fact is that b12 taxes the adrenals

WHERE do you find such a "fact"?


When a person has hashimoto's thyroiditis and can't tolerate thyroid hormone because of metabolic problems in CFS, and b12 just makes that worse


B12 deficiency causes Hashimoto's. B12 is not known to affect thyroid hormone at all and nobody who thought that it might and has gotten tested has been able to demonstrate that it is affected in any way. A sizable percentage of people using the active b12 protocol successfully are hypothyroid including myself. I have been tested twice a year for decades. It doesn't make it worse, or better at all.

So these kinds of recommendations, without any testing at all, have to be taken with a grain of salt, imo

So test all you want and have as many grains of salt that you want, Redmond Real Salt is a tasty brand.

are entire discussions devoted to touting certain brands of supplements

Yes, certainly. Only certain brands work predictably. Would you prefer to waste your money or other peoples on a brand that doesn't work? I also tout Redmond Real Salt as the best tasting salt I've ever had. You are free to buy whatever you want whereever you want for any reason you want.

 

[markmc20001]

my brain fogged rationalization on this program.

I think it is important to remember we are on the internet dealing with people we don't know, and trying some new treatment on our own with over the counter vitamins; while unsupervized by a medical doctor.

I'm very happy Freddd has stuck his neck out to share what has helped him. it has helped me some too, but I haven't been able to get my health back completely. I have gotten off antibiotics, and have had noticable improvement. Which to me, is better than nothing.

We also have different complications and levels of sickenss, but are desperate becuase of of the little to non-existant funding (eg: WPI) for treating and diaognosiing our illnesses.

Many of us probably have a combination of different problems we are trying to treat on our own becuase there seems to be no funding, or good researched backed treaments, on the horizon that may help in the near future. Sad, but reality in my mind.

so the choice to me is:

1) wait for personalized medicine(personal genome testing with medications and vitamins tailored to individuals) that may provide better treaments, in the next ten years, for each person(if you have enough money to afford it)

2) OR, experiment on my own at the risk of screwing myself up here by trying things that help others and adjusting accordingly. Fortunately I have developed the skill of listening to my body and intuition to fumble through and gain some benefit.

I've chosen the risk of screwing myself up route, becuase I can't wait and probably won't be able to afford the personalized medicine that will be available to the healthy folks with insurance, or rich folks.

 

[markmc20001]

Deplin is methyfolate by prescription in doses of 7.5 mg to 15 mg a day. INteresting that methylfolate vitamins are becoming prescribed for depression now....

http://www.deplin.com/LifeWithDepression,Causes