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B-12 - The Hidden Story

Messages
12
Location
South East England
Just wondering if anyone has tried B-Plex (B-Complex minus Folic acid and B12) by Biocare in the UK. Not sure if the posting of links is permitted on this site, so haven't to be on the safe side. As far as I can tell the main downside is that it contains Panagamic Acid which has a dubious reputation.

I'm hoping this product plus MB12, ABD12 and metafolate will avoid/reduce the anxiety/depression every time I start the programme.

Thanks.
 
Messages
171
Location
London
Does anyone know where I can get methylcobalamin injections from? My doctor only has hydroxocobalamin and cynaocobalamin on his computer as listed? I think injections would be much better than sub. tabs?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Does anyone know where I can get methylcobalamin injections from? My doctor only has hydroxocobalamin and cynaocobalamin on his computer as listed? I think injections would be much better than sub. tabs?

Hi Energyoverload,

I think injections would be much better than sub. tabs?


I used to think that too. With 6 years of experience injecting methylb12 I have learned otherwise. The mb12 is fragile and can be destroyed by light even before you receive it making it worthless. The very best crysatlas are as effective as the Enzymatic Therapy or Jarrow brands, but no better. Almost all injectable mb12 I have had is inferior to those two brands. Right now I inject mb12 10mg SC three times a day to force diffusion of b12 into the CSF/CNS. However I also take about 20mg of a combination of those two brands daily for their qualitative aspects. They cause healing in my CNS that the injections alone don't.

Try the sublingual tablets first. Then if the CNS symptoms don't clear up and your feet keep getting more numb and lose muscle control and so on and the deterioration continues, then injections can help, but likely at much higher levels and more frequently than you had any idea of.

And it isn't b12 all by itself. You will need the basics and Metafolin for most effectiveness..
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
My Dr just prescribed me Folinic Acid, 1mg, 2 times per day. I dropped the script off at the Pharmacy, and they need to clarify since it only comes in 5mg is what they said. Anyone know better about this?

GG

correction, the script was actually 10mg/ 2 times per day, so 20mg/day! I am not noticing anything.

GG
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
correction, the script was actually 10mg/ 2 times per day, so 20mg/day! I am not noticing anything.

GG

Hi Ggingues,

I would try the Metafolin. It is totally more effective for many people. In some people folinic acid blocks Methylfolate and people have severe induced folate deficiency. I would be really sick in just a few days on that much folinic acid.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Question for rich or fred: is there any reason while taking mb12 not also to have hydroxy injections? My doctor is offering once a month hydroxy, so I'm thinking why not take her up on it, while also continuing the sublingual mb12? If anything, wouldn't there just be an additive benefit?
 

richvank

Senior Member
Messages
2,732
Question for rich or fred: is there any reason while taking mb12 not also to have hydroxy injections? My doctor is offering once a month hydroxy, so I'm thinking why not take her up on it, while also continuing the sublingual mb12? If anything, wouldn't there just be an additive benefit?

Hi, Mr. Kite.

I would say that this would be O.K. for most people who have ME/CFS, but if a person has an inborn error of metabolism that involves the intracellular B12 processing enzymes, it may not be possible to convert hydroxocobalamin to the active, coenzyme forms readily or at all. Freddd can tell you about that, since he appears to have this issue, and his view is that hydroxocobalamin is deleterious. He also believes, based on his interactions with others, that this type of inborn error is not all that rare, as the published literature suggests.
I hope this issue can be resolved someday. In the meantime, I can tell you that in our clinical trial with 30 women, about two-thirds experienced significant benefit from a methylation protocol that used hydroxocobalamin. I don't know whether any of those who did not respond as well had a B12 processing error or metabolism or not, since we did not characterize those enzymes.

Best regards,

Rich
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Hi Ggingues,

I would try the Metafolin. It is totally more effective for many people. In some people folinic acid blocks Methylfolate and people have severe induced folate deficiency. I would be really sick in just a few days on that much folinic acid.

So since I am not feeling any worse than usual, what does this imply?

GG

PS The script says it is Leucovorin Calcium. My Dr is pretty knowledgable, not the regular doc. FYI
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
So since I am not feeling any worse than usual, what does this imply?

GG

PS The script says it is Leucovorin Calcium. My Dr is pretty knowledgable, not the regular doc. FYI

Hi Ggingues,

So since I am not feeling any worse than usual, what does this imply?

That you have no basis for comparison. If you were deficient going into this, nothing has changed. It might take a while for things to become worse, or better. For me the most noticable first change was a large decrease in visible cobalamin in my urine. That took 2 hours. Then the first night I started dreaming like I hadn't dreamed in decades. Then the next few days all the skin lesions and angular cheilitis of 53+ years standing started healing. Inflammation decreased throughout my body over the next couple of weeks and things in general healed. This was after 7 years of healing with the mb12/adb12. I never experienced a HARD folate deficiency until the glutathione induced deficiency. That helped clarify everything for me.

Now, if I were to take folic acid or folinic acid with incorrect timing relative to the Metafolin, the angular chelitis would be back in a few days and many other things to follow. It isn't a sudden immediate folate crash like the glutathione produced but rather much more gradual.

Now if you try this for a couple of weeks, then switch to the Metafolin for a month and then back to the folinic acid, you would see the differences, if Metafolin is more effective for you. An A-B-A-B comparison routine will tell you everything.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Hi, Mr. Kite.

I would say that this would be O.K. for most people who have ME/CFS, but if a person has an inborn error of metabolism that involves the intracellular B12 processing enzymes, it may not be possible to convert hydroxocobalamin to the active, coenzyme forms readily or at all. Freddd can tell you about that, since he appears to have this issue, and his view is that hydroxocobalamin is deleterious. He also believes, based on his interactions with others, that this type of inborn error is not all that rare, as the published literature suggests.
I hope this issue can be resolved someday. In the meantime, I can tell you that in our clinical trial with 30 women, about two-thirds experienced significant benefit from a methylation protocol that used hydroxocobalamin. I don't know whether any of those who did not respond as well had a B12 processing error or metabolism or not, since we did not characterize those enzymes.

Best regards,

Rich

Rich - thanks for the clear explanation, appreciate it. I suppose there is no real way to tell if one is incapable of converting hydroxycobalamin without either some kind of lab testing (?), or knowing the signs and symptoms of possible negative effects of non-conversion (or total nonresponse)?

Just curious - when you noticed the ~1/3 not responding, was there any idea to switch them to the methyl form, or was it an issue of disrupting the integrity of the trial? If not, have you thought to follow up with non-responders trying with methyl b12, or did you hypothesize other reasons for the failure related more to folates or other factors?

Just trying to get a handle on the spectrum of responses with these protocols and if there is possibly a way to better streamline the process, so people can hone in on the best treatment for them relatively quickly and with less guesswork, instead of wasting weeks/months trying different b12s, different folates, etc.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Question for rich or fred: is there any reason while taking mb12 not also to have hydroxy injections? My doctor is offering once a month hydroxy, so I'm thinking why not take her up on it, while also continuing the sublingual mb12? If anything, wouldn't there just be an additive benefit?

Hi Mr. Kite,

I can't think of any reason to think that hydroxycbl will be damaging in any way except paying for something so relatively useless. It helps about 2/3 of people with about 1/3 of symptoms and 1/3 of people with almost nothing. For me out of all the several hundred symptoms I had, cyanocbl kept my MCV under 100 (99.8) for decades so no doc would believe that I could have massive b12 deficiency symptoms without MCV >100. Hydroxycbl and cyanocbl are two inactive vitamers that cause blindness in doctors.

As hydroxycbl has to convert to adb12 and/or mb12 to do anything at all except combine with cyanide and maybe a few other non-vitamin chemical interactions, and it does so in a limited fashion, having to fit through the keyhole of enzyme conversion, if you are absorbing 1000mcg of mb12 from a 5mg Jarrow sublingual will another 10-30mcg make any difference? As it is excreted rapidly I wouldn't worry about it at all. You could make a comparison. Try the 5mg Jarrow (equivalent to a 1000mcg mb12 injection) and see the effect and try the 1000mcg hydroxcbl injection and compare the two. That would be educational and demonstrate to you the very obvious differences. And then of course report the results.

Hydroxycbl gives me acne type lesions within a day or two. Methylb12 then causes them to go away in 3 or 4 days. Cyanob12 kept my MCV under 100 (99.8) for two decades of vegetarianism so I guess it wasn't totally worthless for me, just almost.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Rich - thanks for the clear explanation, appreciate it. I suppose there is no real way to tell if one is incapable of converting hydroxycobalamin without either some kind of lab testing (?), or knowing the signs and symptoms of possible negative effects of non-conversion (or total nonresponse)?

Just curious - when you noticed the ~1/3 not responding, was there any idea to switch them to the methyl form, or was it an issue of disrupting the integrity of the trial? If not, have you thought to follow up with non-responders trying with methyl b12, or did you hypothesize other reasons for the failure related more to folates or other factors?

Just trying to get a handle on the spectrum of responses with these protocols and if there is possibly a way to better streamline the process, so people can hone in on the best treatment for them relatively quickly and with less guesswork, instead of wasting weeks/months trying different b12s, different folates, etc.

Hi Mr Kite,

That is what I and many others here and elsewhere have been doing for 8 years so that you don't have to do quite so much personal experimenting. Go check out http://forums.wrongdiagnosis.com/showthread.php?p=276448&posted=1#post276448 if you would like to follow a bunch of people through this process. Most had tried "Plan A" first, the hydroxycbl/cyanocbl protocols with little success.

I suppose there is no real way to tell if one is incapable of converting hydroxycobalamin without either some kind of lab testing (?), or knowing the signs and symptoms of possible negative effects of non-conversion (or total nonresponse)?

I have never met anybody, myself included that had no response whatsoever. Cyanocbl did keep my MCV <100 (99.8) for 20 years of vegetarianism. The other 199 or so symptoms or whatever got worse year by year. The children who are totally non-responsive usually die or nearly so in infancy so adult "discoveries" of those with total non-conversion is extremely rare. However, relative ineffectiveness abounds. With adb12/mb12 100 to 10,000 times more effective than the inactive forms why diddle around? They are partially effective for 2/3 of people for 1/3 of active b12 deficiency symptoms so even at their best they are quite ineffective. All the other hundreds of unhelped syumptoms then become mysterious diseases with lots of names and no cure.
 

Rockt

Senior Member
Messages
292
Wasn't sure which post to ask this in, and it may be kind of a dumb question, but... how do you take mb12 and ab12 simultaneously? ie. I started mb12 on Tues. with a 1/2 tablet in the afernoon and a 1/2 in the evening; took a 1/2 yesterday morning and 1/2 in the afternoon; made them last 2 hours each time; going to take 3 1/2's today, (am, pm, evening). Not experiencing any bad symptoms, (not experiencing much of anything, but I know it's early), so I'd like to start ab12 and metafolin tomorrow. But since I'm taking most of the am, pm and evening to absorb my mb12, how do you add the ab12 - put an mb12 under one side and the ab12 under the other at the same time?

Again, might sound a bit stupid, but I'm really not sure how to go about it.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Wasn't sure which post to ask this in, and it may be kind of a dumb question, but... how do you take mb12 and ab12 simultaneously? ie. I started mb12 on Tues. with a 1/2 tablet in the afernoon and a 1/2 in the evening; took a 1/2 yesterday morning and 1/2 in the afternoon; made them last 2 hours each time; going to take 3 1/2's today, (am, pm, evening). Not experiencing any bad symptoms, (not experiencing much of anything, but I know it's early), so I'd like to start ab12 and metafolin tomorrow. But since I'm taking most of the am, pm and evening to absorb my mb12, how do you add the ab12 - put an mb12 under one side and the ab12 under the other at the same time?

Again, might sound a bit stupid, but I'm really not sure how to go about it.

Hi Rockt,

I put up to 7 or 8 of the tablets in at once spread all along the arch. However, as adb12 doesn't need the same frequency generally, and for now there is the folic acid question, I would take a Metafolin on an empty stomach 30 minutes before the adb12 and another 45 minutes into one. Once you get the Metafolin going you can test for yourself in what way folic acid affects you. I would suggest that perhaps taking the adb12 in such a way once each 3 days to begin with would be quite satisfactory. Some people never take off like a rocket and some do only after some or all of the critical cofactors are in place. Only certain symptoms respond immediately in an obvious way. Others respond slowly in almost non noticvable ways. Also, it may take the deeper penetration of 5mg Jarrow in one dose to reach the tissues that need it. Metafolin is often a "kickoff" critical cofactor and so is adb12, SAM-e, L-carnitine fumarate, Zinc, Vit D, TMG or magnesium. That is a major reason why it isn't simple.
 

Shellbell

Senior Member
Messages
277
Hi Fred,

I have a couple of questions about the adb12???

1. On those days that you take the adb12, do you take more mgs of folate than you do on the other days when not taking the adb12?
2. Is there a best time of the day to take the adb12?
3. Do you take adb12 alone or with the mb12?

I know I have come across some of the answers, but trying to find it by reading over all the info again is a bit much for me right now. I am taking care of an injured 91 year old mom and have limited time on the computer at the moment! Thank you in advance for your help!!

Shelly
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fred,

I have a couple of questions about the adb12???

1. On those days that you take the adb12, do you take more mgs of folate than you do on the other days when not taking the adb12?
2. Is there a best time of the day to take the adb12?
3. Do you take adb12 alone or with the mb12?

I know I have come across some of the answers, but trying to find it by reading over all the info again is a bit much for me right now. I am taking care of an injured 91 year old mom and have limited time on the computer at the moment! Thank you in advance for your help!!

Shelly

Hi Shelly,

When I take the adb12 I do it immediately following a meal with the B-right with the folic acid. SO the order is like this.

  1. Metafolin 15 minutes before eating attempting top preload the receptors with Metafolin.
  2. Food with rest of vitamins, B-right and Metafolin together 15 minutes after eating
  3. Adb12 15 minutes following B-right and Metafolin in #2
  4. Metafolin 1 hour into adb12
In effect I take one additional Metafolin on the days I take the adb12. This schedule allows me to take the folic acid without a setback. While the cheilitis is healing, I know within two hours if it has switched directions from the folic acid. I take the adb12 after my first meal (noon). I only eat twice a day. As the raisin bran with soy milk I often eat for this meal as the raisin bran with soy milk I often eat for this meal also used to have some folic acid in it but doesn't now in a reformulation, I would have needed to isolate it. Be careful of what is hiding in your food.
 

Shellbell

Senior Member
Messages
277
Hi Fred,

This is very helpful. I will start taking the adb12 starting tomorrow and get it into my routine.

Shellbell
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Hi Ggingues,

So since I am not feeling any worse than usual, what does this imply?

That you have no basis for comparison. If you were deficient going into this, nothing has changed. It might take a while for things to become worse, or better. For me the most noticable first change was a large decrease in visible cobalamin in my urine. That took 2 hours. Then the first night I started dreaming like I hadn't dreamed in decades. Then the next few days all the skin lesions and angular cheilitis of 53+ years standing started healing. Inflammation decreased throughout my body over the next couple of weeks and things in general healed. This was after 7 years of healing with the mb12/adb12. I never experienced a HARD folate deficiency until the glutathione induced deficiency. That helped clarify everything for me.

Now, if I were to take folic acid or folinic acid with incorrect timing relative to the Metafolin, the angular chelitis would be back in a few days and many other things to follow. It isn't a sudden immediate folate crash like the glutathione produced but rather much more gradual.

Now if you try this for a couple of weeks, then switch to the Metafolin for a month and then back to the folinic acid, you would see the differences, if Metafolin is more effective for you. An A-B-A-B comparison routine will tell you everything.

Thanks for the feedback, so I should ask the Dr to try Metafolin and see if I have a reaction to that?

GG

PS If you have website were I could do a little research, I would appreciate it.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City