B-12 - The Hidden Story

[mtnwoman]

Thanks Rich,

Before testing I went off all B12 for 3 days,,, but before I went off for 3 days I'd read these boards, and had re- started some methyl 5 mg SL once a day for about 4 days/week x 1 week,,, over the year had been doing drops of hydroxyCB-- 2-3mg SL -- by Scientific Botanitcals, several times a week max.

And going back further, over the past ten years have periodically ( 6x/year)gotten a Meyers IV with cyanoCB-- usu I do ok with these -- I love the magnesium; couple years ago did sq inj of methylCB. I recall having a "brain reaction" from doing methylB12 by inj -- kind of headache/fog,,,flare of what I call my lyme neuro symptoms. I was afraid it was "mixing with mercury in my brain".

Do you know of any central repository of expert knowledge on B12 metabolism? When I googled "transcobalamin" I got conflicting info about it's names -- is it TC1 or TC2 or TC3 or HoloTC....and this was from scientific reports!

Quest Labs had this to say about the test I did "Decreased concentrations are associated with infants with megaloblastic anemia or transcobalamin deficiency." So I gather that I have transcobalamin deficiency -- i,e, I have difficulty getting B12 into my tissues? even tho it reflects "floating around" in my serum via the elevated serum B12 level?

If this is true -- that I have a transcobalamin deficiency, and thereby difficulty in getting B12 into tissues -- how do I get it in? Push higher doses?

many thanks, mtnwoman

 

[Tal]

Ok I've been continuing to take the Advanced B-12 Complex by Source Naturals (a combination of 2.5mg of methylcobalamin, with 2.5mg of adenosylcobalamin) for a week now, and I'm clearly having problems with it. At first it was just a bit less sleep that seems to come and go, but now almost all my symptoms are becoming worse. Mostly I seem to notice my sore muscles a bit more. Almost like I didn't pay as much attention to them before? Or I didn't notice the pain as much? The reason I know it has to be the B12, is because I've been taking my other supplements for months now, with some improvement as a result.

Now the thing that really makes me wonder, is that I've only been taking HALF a tablet of the B12. That's not much to be getting more problems. Also I had ordered the Solgar Metafolin, which didn't come in yet. If I take that, will my problems become magnified?

Overall there is no way I'm taking the whole B12 tablet with Metafolin. I understand people here are saying that there is a startup detox or whatever you want to call it, but what if it just doesn't agree with me? I mention this because I had always been fast paced. I mean this in terms of a fast reaction time... It's useful for video games Anwyay, I was wondering if the B12 might overdo it? Or just if I'm the wrong person for it?

 

[richvank]

Hi, mtnwoman.

I've copied your earlier post here, and my comments are below your two posts.

"Question re labwork for B12 (is this an ok place to ask?)

Via Quest Labs I had a normal CBC: a very Low Vitamin B12 binding capacity, unsaturated (transcobalamin) 287 (nl= 650-1340); a high serum B12 1513 (nl= 200-1100); a normal methylmalonic acid;

Also had both MTHFR mutations and low homocysteine of 6.9.

What do y'all make of the low transcobalamin? Does that mean I am not able to get B12 to the tissues? specifically methyl B12?

With normal methylmalonic acid, does that mean the adensylocobalamin is ok?

[ I am a CDC positive chronic neuro lyme person ]"

Thanks Rich,

Before testing I went off all B12 for 3 days,,, but before I went off for 3 days I'd read these boards, and had re- started some methyl 5 mg SL once a day for about 4 days/week x 1 week,,, over the year had been doing drops of hydroxyCB-- 2-3mg SL -- by Scientific Botanitcals, several times a week max.

And going back further, over the past ten years have periodically ( 6x/year)gotten a Meyers IV with cyanoCB-- usu I do ok with these -- I love the magnesium; couple years ago did sq inj of methylCB. I recall having a "brain reaction" from doing methylB12 by inj -- kind of headache/fog,,,flare of what I call my lyme neuro symptoms. I was afraid it was "mixing with mercury in my brain".

Do you know of any central repository of expert knowledge on B12 metabolism? When I googled "transcobalamin" I got conflicting info about it's names -- is it TC1 or TC2 or TC3 or HoloTC....and this was from scientific reports!

Quest Labs had this to say about the test I did "Decreased concentrations are associated with infants with megaloblastic anemia or transcobalamin deficiency." So I gather that I have transcobalamin deficiency -- i,e, I have difficulty getting B12 into my tissues? even tho it reflects "floating around" in my serum via the elevated serum B12 level?

If this is true -- that I have a transcobalamin deficiency, and thereby difficulty in getting B12 into tissues -- how do I get it in? Push higher doses?

many thanks, mtnwoman

O.K., it sounds as though you didn't supplement adenosyl B12, so the fact that your methylmalonate is normal tells us that your cells have been able to convert enough of the other forms of B12 to adenosyl B12.
As far as the transcobalamin is concerned, my understanding of the test you ran is that it measures the level of transcobalamin that is not binding B12. The fact that your value came out low could be caused by a transcobalamin deficiency, as you have suggested. However, I think it could also be caused by having a high level of B12 bound to a normal total amount of transcobalamin, so that there is a low level of residual transcobalamin that is not bound to B12.

There is a new test that has been developed by Abbott Labs ("AxSYM Active-B12") that measures the amount of B12 that is bound to transcobalamin, the socalled holotranscobalamin. I don't know how available this test is in the U.S. If you were able to get this test, I think you could add together the bound and unbound transcobalamin, and then you would know whether or not you have a normal total level of transcobalamin, i.e. whether there is a transcobalamin deficiency.

The number to call to ask about that would probably be 1-877-4ABBOTT.

The serum B12 measurement measures the total B12 in the blood serum. About 80% (on the average) of this is normally bound to haptocorrin, and about 20% to transcobalamin. The B12 bound to haptocorrin is not available to the cells of the body in general, but only to the liver cells, which have receptors for haptocorrin. Although the research on this is not completed, the haptocorrin is probably serving as a salvage pathway for B12, handling the extra that the cells of the body export to the blood, and feeding it back to the liver. The liver exports some of it in the bile, and it is then available to be bound to intrinsic factor and imported by the cells lining the latter part of the small intestine, which then bind it to transcobalamin and put it back into the blood, so that it is then available to the cells of the body again. This is probably a mechanism to supply B12 when the diet is temporarily low in it. It is known that haptocorrin is not essential to life, so long as there is enough B12 coming in from the diet.

Your low-normal homocysteine and your MTHFR polymorphisms suggest that you may have a partial block in your methylation cycle, and that it may be due to a deficit in the active form of folate needed by methionine synthase in the methylation cycle. You didn't mention supplementing 5-methyltetrahydrofolate (Metafolin or FolaPro), and the MTHFR polymorphisms would inhibit the production of this active form of folate. So I'm guessing that your issue is with the folate side of the picture, rather than the B12 side, based on what you've reported.

I don't know of a good single reference on B12 metabolism. Dr. Ruma Banerjee published a book several years ago, but the information is outdated and the book costs a lot on Amazon. If you go to PubMed and use the keywords Banerjee R and B12 you will get the abstracts of the most up-to-date work from her group, which is probably the leading B12 research group.
There have been some name changes. The current names of the B12 carrier molecules in the blood are transcobalamin and haptocorrin. The earlier name for transcobalamin was transcobalamin II. The earlier names for haptocorrin were transcobalamin I and III and also R protein. Holotranscobalamin refers to transcobalamin that is bound to B12.

Best regards,

Rich

 

[jmiller]

Hi Joseph & Sunday, thank you both for your concern. Its a challenging path we are all going on together I always appreciate your input. I know this protocol is the answer for many of us but it is so precise and each one of us have our own sensitivities to anything we put in our mouth. When you listen to your body the answer is usually there.

The last 3 weeks something changed and at first it was vague but now I am on a downward spiral both mentally & physically. I keep track of every change made to my "pill taking ritual" even if a change of brand was made. I did make a minor change in brand with one of my supplements 3 weeks ago and hope this solves my mystery.

Well let you know what I discover.

Lena

Hi Lena,
I desperately need for this protocol to be the answer. The ride has been scary so far. The intense mood swings are troubling. Im glad theres a support group here to help out I cant do this alone. I continue to take the supplements even though my body is tells me to do otherwise at times. I keep reading to understand. I came across the following on the Active B12 Basic thread earlier this weekWhen neuropsychiatric healing starts moods and personality can start changing dramatically and suddenly and continue for several months. That hits it on the head for me. If it wasnt for information like this, I would have bailed out weeks ago
http://forums.wrongdiagnosis.com/showthread.php?t=62327

Fredd told me earlier that"It can take a while for things to settle down Volatile emotions are one of the effects of things improving, healing. The things that hit hard on startup are often the first things corrected". I need to go back to these earlier posts from time to time to regain perspective

Please let us know if the brand adjustment does the trick for you. Its good that youre taking notes. Dont forget that L-carnitine can have a strong startup effect if it has been lacking. Take it slow...

joseph

 

[Freddd]

Question re labwork for B12 (is this an ok place to ask?)

Via Quest Labs I had a normal CBC: a very Low Vitamin B12 binding capacity, unsaturated (transcobalamin) 287 (nl= 650-1340); a high serum B12 1513 (nl= 200-1100); a normal methylmalonic acid;

Also had both MTHFR mutations and low homocysteine of 6.9.

What do y'all make of the low transcobalamin? Does that mean I am not able to get B12 to the tissues? specifically methyl B12?

With normal methylmalonic acid, does that mean the adensylocobalamin is ok?

[ I am a CDC positive chronic neuro lyme person ]

Hi Mtnwoman,

A good summary of the basics is at http://forums.wrongdiagnosis.com/showthread.php?t=62327.
At http://forums.wrongdiagnosis.com/showthread.php?p=234157#post234157 you can discuss experiences with lots of people having sucess and some not with the active b12 protocol.


With normal methylmalonic acid, does that mean the adensylocobalamin is ok?

No, it does not. None of the tests used can indicate that you have full sufficiency, only that you don't have extreme deficiency in the body to the point of severe system failure of 2 specific failure points out of perhaps 600. There is much incorrect belief about tests. You can test that out by taking some adb12. If you have a response such as "more energized" you will know that you had mitochondria that were not fully charged up with adb12. If you have muscle pains or are unable to grow muscle with exercise or have exercise intolerance all of these can point at a failure in the mitochondria that may be adb12 deficiency or a lack of l-carnitine. As this response only happens once or twice for a large percentage of people unless they don't take adb12 again for a few months, be observant. Further not one of these tests says anything about cerebral spinal fluid cobalamin which comprises the potential for 2 separate deficiency syndroms for which there are no tests, though there are some early studies looking at CSF MMA levels and csf homocystein.

There are 4 separate deficiency syndromes, adb12 brain/csf, mb12 brain/csf, adb12 body and mb12 body. The low levels of cobalamin are found in the CSF of many folks with FMS/CFS/Alzheimer's and possibly other neurological syndromes. Normal oral doses of mb12 and adb12, not to mention Hycbl or Cycbl, do not enter the CSF in sufficient quantity for people with these depressed levels sufficiently to correct the problems. Again I speak from experience and collection of information from many people who have experienced this separate effectiveness at certain dose levels


When I googled "transcobalamin" I got conflicting info about it's names -- is it TC1 or TC2 or TC3 or HoloTC....and this was from scientific reports!

You did not get conflicting information about the transcobalamins. There are 6 names, 12 if you include the Roman numeral forms. TC1 (haptocorin, TCI) or HoloTC1 (HTC1, HTCI) when cobalamin is bound to it is in saliva and serum. TC2, HoloTC2, )HTC2, HTCII ) when cobalmin is bound to it transports b12 to cells. TC3 (HoloTC3 when cobalamin is bound to it) transports inactive cobalamins and others that it picks up back to the liver for reprocessing via excretion in the bile and reabsorbtion in the intestine as part of the enterohepatic reciculation loop. This is simplified. It is a complicated system.

If this is true -- that I have a transcobalamin deficiency, and thereby difficulty in getting B12 into tissues -- how do I get it in? Push higher doses?


If you have a startup response to mb12 of one of the 5 star brands and possibly others, it indicates that there is unfilled need for mb12 in your system. This excess mb12 is gotten to the cells via diffusion. It works spectacularly well and bypasses all the assumptions any of which may be faulty which is why a person is deficient in the forst place. The reason it has much startup is that it gets sufficient mb12 and adb12 immediately so all needs are brought present very rapidly and healing starts up almost immediately, frequently causing a drop in potassium as tissue healing cell formation goes into high gear. After a person has gotten through all the startup responses in the body they can perform a pragmatic test for low CNS/CSF cobalamin level. It needs to be performed with both adb12 and mb12 and a person may respond separately to none, one or both forms of active b12. This indicates that a person could have benefit from mb12 injections somewhere between 5 and 10 mgs daily and occasional larger sublingual adb12 timed to ride into the CSF with the mb12 from injection via a steeper diffusion gradiant. It can restore some neurological functioning rapidly. Hallucinations and such often stop within hours. Personality and mood disorders caused by low CSF/CNS b12s start reversing immediately though often there is healing that takes 9 months or more. Mb12 has documentaed ability to heal some forms of neurological damage from causes other than b12 deficiency. All sorts of damage is caused by b12 deficiency including personality and mood disorders and even extreme psychosis.

Just a comment, not supplementing for 3 days will cause a lower serum level but will not take it back to pre-supplementing serum level. Taking any mb12 virtually assures that it will test high for a sustained period afterwards. On the dose I need to correct the numbness in my feet my serum level is estimated at 200,000pg/ml. That is what is needed to get into the CSF and prevent further neruological damge and to correct some of the damage already done. One day without and my feet start getting more numb.

 

[Freddd]

Ok I've been continuing to take the Advanced B-12 Complex by Source Naturals (a combination of 2.5mg of methylcobalamin, with 2.5mg of adenosylcobalamin) for a week now, and I'm clearly having problems with it. At first it was just a bit less sleep that seems to come and go, but now almost all my symptoms are becoming worse. Mostly I seem to notice my sore muscles a bit more. Almost like I didn't pay as much attention to them before? Or I didn't notice the pain as much? The reason I know it has to be the B12, is because I've been taking my other supplements for months now, with some improvement as a result.

Now the thing that really makes me wonder, is that I've only been taking HALF a tablet of the B12. That's not much to be getting more problems. Also I had ordered the Solgar Metafolin, which didn't come in yet. If I take that, will my problems become magnified?

Overall there is no way I'm taking the whole B12 tablet with Metafolin. I understand people here are saying that there is a startup detox or whatever you want to call it, but what if it just doesn't agree with me? I mention this because I had always been fast paced. I mean this in terms of a fast reaction time... It's useful for video games Anwyay, I was wondering if the B12 might overdo it? Or just if I'm the wrong person for it?

Hi Tal,

for a week now, and I'm clearly having problems with it. At first it was just a bit less sleep that seems to come and go, but now almost all my symptoms are becoming worse. Mostly I seem to notice my sore muscles a bit more

So far that sounds like a completely normal startup response to mb12 and adb12. They BOTH will influence sleep and produce a more energized feeling and more energy but for different reasons. As this initial phase fades away sleep will normalize. With mb12 the intial sensation is that all the symptoms intensify including muscle pain. A lot of this may be illusion in that mb12 turns up the volume in the nervous system so everything perceived is louder/brighter/more intense including all the miserable feeling things you have been trying not to feel for years. It's actually turning things up to normal but the deficiency has caused the intensity to decrease so the nervous system turns up the gain on the signals to perveive the lessened signals. This makes everything more intense including muscle pain. As healing starts everything starts shifting around. If there are 10,000 steps to heal, then in some ways that is just 9999 ways for things to feel wrong differently. Many times as healing progresses the symptoms walk through the same sequence backwards that they followed on the way in but 100x faster.

There is the old song that says it - BEEN DOWN SO LONG FEELS LIKE UP TO ME. It takes a while to readjust to things working normally. MB12 affects the very nervous system with which we perceive everything. Assuming you have the other necessary cofactors on board healing is progressing and some things will start getting better. You might make it an interesting exercise to write down all your many symptoms from before treatment on a spreadsheet and track them week by week as they change. If a person has 200 symptoms they might not even notice 100 of them changing or even fading away if the most obvious ones are still grabbing all their attention.

For me the Metafolin cut down on inflammation very quickly. Your body may be waiting on the Metafolin to heal. Make sure you have potassium as this is the period when you could run into trouble, even serious trouble, if you don't have it.

It's good to hear you are having such an excellent response to the mb12 and adb12. The things that kick up the most first are often the fastest to improve. You might find that some Melatonin in the evening helps you sleep better.

Don't get all stressed out about this normal startup response. It will fade and you will feel a lot better as it does.

One reason to use separates like the Jarrow or Enzymatic Therapy mb12 and the Country Life Dibencozide (adb12) is that you can then adjust the ratio between them. SOme people are very sensitive to that ratio and do better if they can adjust it. You may find that they are more effective and get you through the startup more quickly. The lower the dose the longer the startup lasts. There are low enough doses possible that a person will never get through startup as they never reach a saturated equilibrium.


I understand people here are saying that there is a startup detox or whatever you want to call it, but what if it just doesn't agree with me

I choose to call it startup repsonses becasue it happens to almost everybody who has any degree of deficiency and only a small part of it for some people is actually detox. People who choose to call it detox have more anxiety by interpreting it that way. If it didn't agree with you I would expect some other type of reaction rather than normal and ordinary startup repsonses. Somebody would have to be a realy freak mutant in order to not use adb12 and mb12 in their body. I have never hear of any such case in any human or other mammal. In fact mb12 is standard all the way down the chain to bacteria and fungi. However, some people do have sensitivities to some of the non active ingrediants in some brands. A good reason to use the brands most people find effective is more familiarity with them.

 

[Tal]

So far that sounds like a completely normal startup response to mb12 and adb12. They BOTH will influence sleep and produce a more energized feeling and more energy but for different reasons. As this initial phase fades away sleep will normalize.

Sleep was worse in the first half of the week than it seems to be now. So perhaps it's heading in the right direction? I've had problems with sleep since the CFS, but there was a clear difference in my sleep after taking the B12. Even waking up in the night more often.

With mb12 the intial sensation is that all the symptoms intensify including muscle pain. A lot of this may be illusion in that mb12 turns up the volume in the nervous system so everything perceived is louder/brighter/more intense including all the miserable feeling things you have been trying not to feel for years. It's actually turning things up to normal but the deficiency has caused the intensity to decrease so the nervous system turns up the gain on the signals to perveive the lessened signals. This makes everything more intense including muscle pain. As healing starts everything starts shifting around. If there are 10,000 steps to heal, then in some ways that is just 9999 ways for things to feel wrong differently. Many times as healing progresses the symptoms walk through the same sequence backwards that they followed on the way in but 100x faster.

That's what I was thinking. And though I'm not at all knowledgable about this stuff, I did assume that I may just not have been feeling the sensations as much as I am now. And this do to it's effects on the nervous system.

For me the Metafolin cut down on inflammation very quickly. Your body may be waiting on the Metafolin to heal. Make sure you have potassium as this is the period when you could run into trouble, even serious trouble, if you don't have it.

Should I take the Metafolin when it arrives? Or wait a week or two?

I eat bananas everyday, and probably too many lol. It's my favorite fruit. Would that suffice for potassium? I eat them alot because they are so quick... No knife needed to peel them, and they go bad fast if I don't eat them up.

It's good to hear you are having such an excellent response to the mb12 and adb12. The things that kick up the most first are often the fastest to improve. You might find that some Melatonin in the evening helps you sleep better.

Don't get all stressed out about this normal startup response. It will fade and you will feel a lot better as it does.

It's hard to think of it as an excellent response, when you just want to get better. But I understand what you're saying, and will see how things turn out. It's still too early to conclude too much of anything.

To be honest, I haven't been stressed out over this. I had dealed with anxiety for so long, that I've learned to overcome it quite a bit now.

I've been taking other supplements for awhile now and have seen some improvements. I simply added the two active B12s to my supplements, and will add the Metafolin. It's nice to read different sites and take what you will from them. Because in my opinion, one of the the most important things we can do is understand enough ourselves, as to apply what works best for us.

 

[Freddd]

Sleep was worse in the first half of the week than it seems to be now. So perhaps it's heading in the right direction? I've had problems with sleep since the CFS, but there was a clear difference in my sleep after taking the B12. Even waking up in the night more often.



That's what I was thinking. And though I'm not at all knowledgable about this stuff, I did assume that I may just not have been feeling the sensations as much as I am now. And this do to it's effects on the nervous system.



Should I take the Metafolin when it arrives? Or wait a week or two?

I eat bananas everyday, and probably too many lol. It's my favorite fruit. Would that suffice for potassium? I eat them alot because they are so quick... No knife needed to peel them, and they go bad fast if I don't eat them up.



It's hard to think of it as an excellent response, when you just want to get better. But I understand what you're saying, and will see how things turn out. It's still too early to conclude too much of anything.

To be honest, I haven't been stressed out over this. I had dealed with anxiety for so long, that I've learned to overcome it quite a bit now.

I've been taking other supplements for awhile now and have seen some improvements. I simply added the two active B12s to my supplements, and will add the Metafolin. It's nice to read different sites and take what you will from them. Because in my opinion, one of the the most important things we can do is understand enough ourselves, as to apply what works best for us.

Hi Tal,

I eat lots of high potassium fruits and vegetables. It is the most common mineral in our bodies too. For me it was NOT enough when healing started full blast and I had several separate episodes of sufficiently depressed potassium levels that I was having severe muscle spams when lying in bed. These were relieved quickly by taking potassium supplement on the spot. I had to struggle to get to the kitchen with the spasms, which is where I keep my supplements. Start the Metafolin right away. It appears to increase the availability of b12s to the cells that need them and appears to decrease the rate b12 is excreted in the urine.

One of the differences that developed for me is that instead of having b12 deficiency sleep disorders and falling asleep at the table or anywhere, the only difference between awake and asleep was whether my eyes were open or closed, I started being awake during the day, got very tired in the evening and had restful restorative sleep for the first time in 20 years, and was actually groggy when waking up instead of merely opening my eyes. Metafolin restored normal dreaming, also for the first time in 20 years.

I have found it important to advise people as to the startup responses being signposts to healing becasue the almost automatic reaction is to quit something than appears to make things worse. It appears counter intuitive until one realizes the casue is that the bnervous system starts working better almost right away causing the intensified sensations and greater clarity od perception of all the things wrong. It's a good time to take inventory and make sure that you know what everything is. People have become aware of other serious problems during this period.

 

[Tal]

One reason to use separates like the Jarrow or Enzymatic Therapy mb12 and the Country Life Dibencozide (adb12) is that you can then adjust the ratio between them. SOme people are very sensitive to that ratio and do better if they can adjust it.

To have less of a reaction? Regardless, the brand I bought that has the two active B12s together, is a means of testing out whether or not it's going to do something for me. If it turns out positive, then I will invest further money into it. Right now other supplements are in a priority, while B12 is in the testing phase.

You may find that they are more effective and get you through the startup more quickly. The lower the dose the longer the startup lasts. There are low enough doses possible that a person will never get through startup as they never reach a saturated equilibrium.

Well right now I'm only taking half the tablet. The reason for this, was in case of any possibly reactions to it. I had no clue how my body would respond. What I have planed out, is to add the Metafolin when I receieve it, then see how things go. Then decide if I'm going to take the full tablet of B12. It's logical, since if the reaction was any bigger by taking both a full tablet and Metafolin, I would most likely have quit it all together. We all set out our own pace on the path, in order to reach the finish.

 

[Freddd]

To have less of a reaction? Regardless, the brand I bought that has the two active B12s together, is a means of testing out whether or not it's going to do something for me. If it turns out positive, then I will invest further money into it. Right now other supplements are in a priority, while B12 is in the testing phase.




Well right now I'm only taking half the tablet. The reason for this, was in case of any possibly reactions to it. I had no clue how my body would respond. What I have planed out, is to add the Metafolin when I receieve it, then see how things go. Then decide if I'm going to take the full tablet of B12. It's logical, since if the reaction was any bigger by taking both a full tablet and Metafolin, I would most likely have quit it all together. We all set out our own pace on the path, in order to reach the finish.

Hi Tal,

The ratio between the two, or perhaps certain absolute levels needed, can vary widely. Multiple people have reported anxiety and personality/mood changes of an unpleasant sort when experimenting and taking "too much" adb12 or maybe "too much" compared to mb12. Others have found that they need much larger doses of adb12 to get reduce or remove "brain fog".

Because this particular blend is an unknown from an experiential standpoint; untested for absorbtion rate compared to injections for instance, untested for relative effectiveness compared to a 50/50 blend of two known and tested products, it is much more difficult to have any idea of what is going on for you. When you have questions it is hard to know what is going on. For instance, adb12 might absorb quite well from it but maybe the mb12 crystal isn't up to par or the other way around or who knows. Any way, that is the only point I am making. If you have unsatisfactory results of any kind it may leave me unable to say anything other than "try the known products and tell me what happens with them". Hign on the list of "WHY B12 DOESN'T WORK" list is brand differences. Within just the category of mb12 we saw as much difference between the top and bottom products as between the top mb12 and Cycbl. Whatever the reasons for such differences, the same across all 5 testers (which admittedly is not enough, but still has been highly predictive of people's actual responses in practice) the differences exist.

I hope that your "testing phase" is satisfactory and that you won't need to do it all over again. As you appear to be having pretty normal startup responses it does appear reasonably successful so far.

 

[Tal]

The ratio between the two, or perhaps certain absolute levels needed, can vary widely. Multiple people have reported anxiety and personality/mood changes of an unpleasant sort when experimenting and taking "too much" adb12 or maybe "too much" compared to mb12. Others have found that they need much larger doses of adb12 to get reduce or remove "brain fog".

Much varies widely in a broader sense. For example: you could tell me that anxiety is one sign that it's working, and I wouldn't be surprised. But this anxiety to the B12 hasn't occurred, and if it did apparently anything could be assumed from it; good or bad. As for me, I simply want to play my hand.

Because this particular blend is an unknown from an experiential standpoint; untested for absorbtion rate compared to injections for instance, untested for relative effectiveness compared to a 50/50 blend of two known and tested products, it is much more difficult to have any idea of what is going on for you.

So you're not sure if it was an "excellent response"? :Retro smile: As for a test taken long ago with 5 people I don't know? (unknown origin?) That doesn't hold much weight. I hope you understand this from my perspective. Perhaps a new and bigger test with mutiple forums members would be helpful?

Any way, that is the only point I am making. If you have unsatisfactory results of any kind it may leave me unable to say anything other than "try the known products and tell me what happens with them".

That's fine, because to me it seems as if the "good" and "bad" are walking the same path when it comes to B12. I don't know how else to put it, except that I'm simple seeing where my current path leads.

I hope that your "testing phase" is satisfactory and that you won't need to do it all over again. As you appear to be having pretty normal startup responses it does appear reasonably successful so far.

I hope so. And thank you for your help.

 

[Freddd]

Hi Rich,

Based on some of your comments I have decided to try Folinic acid adding it to what I take. What brand(s) have you found to be most reliably effective?

 

[richvank]

Hi Rich,

Based on some of your comments I have decided to try Folinic acid adding it to what I take. What brand(s) have you found to be most reliably effective?

Hi, freddd.

I'm glad to hear that you are going to give folinic acid a try.

I haven't tested different brands of folinic acid. I extracted the protocol I suggested from Amy Yasko's full treatment program, and she was using Intrinsi/B12/folate from Metagenics, which contained some folinic acid. A little over a year ago, Metagenics changed their formulation, taking folinic acid out of this product, so I then revised the protocol and substituted Actifolate, also made by Metagenics, which includes folic acid, folinic acid, and 5-methyltetrahydrofolate. I did this to keep the protocol as close as possible to the one we ran the clinical study on, so that the results of this study would still be relevant, because I think they are valuable. A significant amount of money was invested to get them.

As I've written before, I can't say that this is the optimum protocol, and I know that you have a very firm view that it is not. But that is the history of it. I selected it to take advantage of the extensive experience Amy had already had, since I had little experience with treatment, having focused on developing a hypothesis for the pathogenesis and pathophyisiology of CFS. I needed a treatment to test this hypothesis, and that's what I selected at the time.

I hope you get some benefit from folinic acid.

Best regards,

Rich

 

[Freddd]

Hi, freddd.

I'm glad to hear that you are going to give folinic acid a try.

I haven't tested different brands of folinic acid. I extracted the protocol I suggested from Amy Yasko's full treatment program, and she was using Intrinsi/B12/folate from Metagenics, which contained some folinic acid. A little over a year ago, Metagenics changed their formulation, taking folinic acid out of this product, so I then revised the protocol and substituted Actifolate, also made by Metagenics, which includes folic acid, folinic acid, and 5-methyltetrahydrofolate. I did this to keep the protocol as close as possible to the one we ran the clinical study on, so that the results of this study would still be relevant, because I think they are valuable. A significant amount of money was invested to get them.

As I've written before, I can't say that this is the optimum protocol, and I know that you have a very firm view that it is not. But that is the history of it. I selected it to take advantage of the extensive experience Amy had already had, since I had little experience with treatment, having focused on developing a hypothesis for the pathogenesis and pathophyisiology of CFS. I needed a treatment to test this hypothesis, and that's what I selected at the time.

I hope you get some benefit from folinic acid.

Best regards,

Rich

Hi Rich,

Thankyou for the information.

I too worked with extracted data. I did basically data mining in a noisy environment 8 years ago looking for what worked for various symptoms I had with various people. I came up with perhaps a thousand people claiming that they have had personal sucess with the various symptoms, 100% of them with methylb12 and/or adb12 (about 10%-15% included adb12), no exceptions. That was pretty overwhelming. I corresponded with many people over this on a lot of neurology forums and the such. There were no exceptions despite only a small minority were using mb12/adb12. Nobody using Cycbl or Hycbl was having significant success despite being 10 times as many people. However, what was disturbing was that it was clear from the data that many people were using mb12 without success which I chalked uop to unknown factors. I also analysed for secondary factors such as SAM-e, l-carnitine, TMG, folate and so on and came up with a list that sucessful people were using. It was also quit clear that folic acid was not working for a lot of people. I then debugged things, finding that not all brands are created equal and that combinations were critical. About 2 weeks after starting mb12, say mid June 2003, it became clear that many of the people having the most extreme startup responses had previously been taking cycbl or hycbl. I started using the term "depleted methylator" as a description of people with certain symptoms that increased in the absence of mb12 and SAM-e and the presence of cycbl and/or hycbl.

The symptoms I was searching on were a lot of neuropathy symptoms, beef-red burning tongue, severe abnormal fatigue, the infamous triad of b12 deficiency, all of which I had in spades, doubled and redoubled and going down fast and hard.

 

[Freddd]

Much varies widely in a broader sense. For example: you could tell me that anxiety is one sign that it's working, and I wouldn't be surprised. But this anxiety to the B12 hasn't occurred, and if it did apparently anything could be assumed from it; good or bad. As for me, I simply want to play my hand.



So you're not sure if it was an "excellent response"? :Retro smile: As for a test taken long ago with 5 people I don't know? (unknown origin?) That doesn't hold much weight. I hope you understand this from my perspective. Perhaps a new and bigger test with mutiple forums members would be helpful?



That's fine, because to me it seems as if the "good" and "bad" are walking the same path when it comes to B12. I don't know how else to put it, except that I'm simple seeing where my current path leads.



I hope so. And thank you for your help.

As for a test taken long ago with 5 people I don't know? (unknown origin?)

I conducted the test with 5 people, myself included who all had hypersensitivity to both mb12 and as it turned out, adb12, and had the ability to distinguish the differences between the two. And therein lies the biggest reason to take separates, so as to know which deficiencies of the 4 one has; CSF/CNS adb12, CSF/CNS mb12, body adb12 and body mb12. Once that is known fine tuning of other cofactors can happen more easily and in a targeted fashion, much less hit and miss guesswork about it.


As far as "long ago" in a galaxy far away ..., the predictive value of the tests have been verified by thousands of people having and continuing to have the predicted results with the 5 star products, many of them after changing from other brands, rated or unrated that were not providing the same results. Further, I have reaffirmed that the 5 star products still are based on my own usage as the standard to which I compare my injections. Many batches of injectable b12 are quite inferior to the 5 star brands and then these make an immediate noticable difference to me despite the lower dose compared to the injectables.


For example: you could tell me that anxiety is one sign that it's working, and I wouldn't be surprised. But this anxiety to the B12 hasn't occurred, and if it did apparently anything could be assumed from it; good or bad

Don't jump to conclusions on partial data. Anxiety is often a b12 deficiency symptom. People with anxiety as a deficiency symptom usually have an increase in anxiety during the perception of intensification stage of mb12. In people that DON'T have anxiety to have it pop up when they take too much adb12 or too much compared to mb12 was a surprise. However, it is pretty consistant. What differs tremendously is just where that "too much" is located. People have tremendously variable responses. It may have to do with whether they have a CNS/CSF deficiency of adb12 or not and how severe that is compared to the CSF/CNS deficiency of mb12. There is insufficient data at this time to know.

As I don't use the term "good or bad" in relation to appearances or disappearances of varoius symptoms, but only try to see the patterns and specific circumstances, I just see things as common or uncommon, indicative of something or unknown. People who try to make "good" or "bad" out of things often get themselves into trouble and stop doing what works to try what doesn't work hence not having any "bad" startup response.

 

[Tal]

I conducted the test with 5 people, myself included who all had hypersensitivity to both mb12 and as it turned out, adb12, and had the ability to distinguish the differences between the two. And therein lies the biggest reason to take separates, so as to know which deficiencies of the 4 one has; CSF/CNS adb12, CSF/CNS mb12, body adb12 and body mb12. Once that is known fine tuning of other cofactors can happen more easily and in a targeted fashion, much less hit and miss guesswork about it.

As far as "long ago" in a galaxy far away ..., the predictive value of the tests have been verified by thousands of people having and continuing to have the predicted results with the 5 star products, many of them after changing from other brands, rated or unrated that were not providing the same results. Further, I have reaffirmed that the 5 star products still are based on my own usage as the standard to which I compare my injections. Many batches of injectable b12 are quite inferior to the 5 star brands and then these make an immediate noticable difference to me despite the lower dose compared to the injectables.

Don't jump to conclusions on partial data. Anxiety is often a b12 deficiency symptom. People with anxiety as a deficiency symptom usually have an increase in anxiety during the perception of intensification stage of mb12. In people that DON'T have anxiety to have it pop up when they take too much adb12 or too much compared to mb12 was a surprise. However, it is pretty consistant. What differs tremendously is just where that "too much" is located. People have tremendously variable responses. It may have to do with whether they have a CNS/CSF deficiency of adb12 or not and how severe that is compared to the CSF/CNS deficiency of mb12. There is insufficient data at this time to know.

As I don't use the term "good or bad" in relation to appearances or disappearances of varoius symptoms, but only try to see the patterns and specific circumstances, I just see things as common or uncommon, indicative of something or unknown. People who try to make "good" or "bad" out of things often get themselves into trouble and stop doing what works to try what doesn't work hence not having any "bad" startup response.

Thank you for your replies.

My B12 startup symptoms are interesting to me, but are very mild compared to something I'm reminded of in my past. This happened before I ever got CFS, when I was trying many supplements that didn't seem to do much. As I was going through the different Adaptogens, I ran into Rhodiola Rosea...

Now why this effected me in such a major way, I have no idea. A called it a superman pill, because that is how I felt. I simply popped one Jarrow brand of Rhodiola Rosea and I noticed:

1) EXTREME ENERGY. I would jog forever without getting tired.
2) Couldn't stop talking very easily after I started.
3) Only 4 hours sleep while feeling RESTED. I jumped out of bed with energy.
4) Feeling a slight rage. Not really angry at anyone in paticular though.
5) Euphoria.

I had stopped taking it soon after starting because the effects were too strong. In fact, even 1/4th of the pill was too strong for me (couldn't fall asleep). Some months later I tried it once in awhile, but it seemed as if the effects were never as strong as the first time.

Right now with CFS and all, I haven't tried it. The reason is that I feel it would be too much on me. Where did all that energy come from? And if I took it I'm afraid I would be using up energy I don't have to spend. Looking back at that, I just never figured out why it effected me in such a major way. All I can say is I didn't have much fatigue back then, so I have no idea of what use it would be taking it after CFS.

I mention this simply because I found it interesting. I tried all kinds of supplements and never seen anything like that.

 

[Freddd]

Thank you for your replies.

My B12 startup symptoms are interesting to me, but are very mild compared to something I'm reminded of in my past. This happened before I ever got CFS, when I was trying many supplements that didn't seem to do much. As I was going through the different Adaptogens, I ran into Rhodiola Rosea...

Now why this effected me in such a major way, I have no idea. A called it a superman pill, because that is how I felt. I simply popped one Jarrow brand of Rhodiola Rosea and I noticed:

1) EXTREME ENERGY. I would jog forever without getting tired.
2) Couldn't stop talking very easily after I started.
3) Only 4 hours sleep while feeling RESTED. I jumped out of bed with energy.
4) Feeling a slight rage. Not really angry at anyone in paticular though.
5) Euphoria.

I had stopped taking it soon after starting because the effects were too strong. In fact, even 1/4th of the pill was too strong for me (couldn't fall asleep). Some months later I tried it once in awhile, but it seemed as if the effects were never as strong as the first time.

Right now with CFS and all, I haven't tried it. The reason is that I feel it would be too much on me. Where did all that energy come from? And if I took it I'm afraid I would be using up energy I don't have to spend. Looking back at that, I just never figured out why it effected me in such a major way. All I can say is I didn't have much fatigue back then, so I have no idea of what use it would be taking it after CFS.

I mention this simply because I found it interesting. I tried all kinds of supplements and never seen anything like that.

Hi Tal,

Let's look at Rhodiola Rosea.

http://en.wikipedia.org/wiki/Rhodiola_rosea
Rhodiola rosea's effects potentially are related to optimizing serotonin and dopamine levels due to monoamine oxidase inhibition and its influence on opioid peptides such as beta-endorphins,[5] although these specific neurochemical mechanisms have not been clearly documented with scientific studies.

I would be inclined to mention that if indeed it has an monoamine oxidase inhibition that it could cause many unintended side effects such as death in combination with many OTC and prescription drugs such as antihistamines, opioids, and so forth. Look up the warnings on such. Also, in combination with some of the herbs that contain small amounts of DMT in a normally ineffective amount an MAOI can cause a psychedelic effect such as Ayahuasca which can cause a panic reaction in unprepared persons when it causes a dramatic "ego death" experience. Shamans all over the world learned of this combination by combining various herbs.

You are probably right about it boosting the effects of energy without actually causing more to be generated. Let's look at the mechanisms of fatigue in FMS/CFS. There appear to be several such mechanisms. First by pragmatic results many people have dramatic reversal of abnormal fatigue as soon as the take adb12 and/or l-carnitine fumarate. This puts the mitochondria back in service producing energy. Many people can convert a small amount of mb12 to adb12 having an energizing effect with mb12 and an additional effect when adb12 is taken. Some people have a huge effect from l-carnitine fumarate together with Alpha Lipoic acid.

Then there is the separate energizing effect on the nervous system from mb12 and SAM-e. Further, a study has indicated by measurement in the CSF in people with FMS/CFS/Alzheimer's a much lower level of cobalamin (unspecified). Many with CFS/FMS have a further energizing effect from doses of mb12 and adb12 (separate responses) large enough to penetrate the CNS/CSF by diffusion. This goes along with a hypothecized "neural fatigue" in FMS/CFS. It would appear that the doses required to diffuse into the CSF/CNS and into the mitochindria actually fix the problem unless something comes along like glutathione induced deficiencies and causes the problems all over again. The b12s get at the root problems, lack of energy generation and neurological function tather than masking the problem with the appearance of more energy without generating it. My ability to work out on a Nordic track went from 17 minutes and struggling to an easy 34 minutes overnight the first day I took l-carnitine fumarate.

 

[Tal]

You are probably right about it boosting the effects of energy without actually causing more to be generated.

Though I don't know enough about it to be sure.

I just came across a site talking about "The Science behind how Rhodiola Rosea Works its Magic"

Here is the link: http://www.powersupplements.com/rhodiola/rhodiola-science.html

Maybe you could understand it better than I.

 

[Freddd]

Though I don't know enough about it to be sure.

I just came across a site talking about "The Science behind how Rhodiola Rosea Works its Magic"

Here is the link: http://www.powersupplements.com/rhodiola/rhodiola-science.html

Maybe you could understand it better than I.

Hi Tal,

I read it. Almost every claim it makes is a result of mb12 and adb12/carnitine/Alpha Liopic acid action in the mitochondria and nervous system. In the absence of adb12 the ATP/mitochondria effects it claims are impossible. With the presence of adb12 etc that happens as a routine. It doesn't say HOW it achieves the effects of adb12 etc without actually taking adb12 etc.

It says NOTHING about the MAOI effect. I don't believe the site linked to. They skip over the things that don't fit their sales pitch.

 

[Tal]

Hi Tal,

I read it. Almost every claim it makes is a result of mb12 and adb12/carnitine/Alpha Liopic acid action in the mitochondria and nervous system. In the absence of adb12 the ATP/mitochondria effects it claims are impossible. With the presence of adb12 etc that happens as a routine. It doesn't say HOW it achieves the effects of adb12 etc without actually taking adb12 etc.

It says NOTHING about the MAOI effect. I don't believe the site linked to. They skip over the things that don't fit their sales pitch.

Yeah it's probably a bad site. I'm just trying to understand how it works. I won't take it while having CFS unless I can be sure it isn't going to cause any harm.