B-12 - The Hidden Story

[Sunday]

That would be the snow angel roll in the snow, Fred. My memory of the other kind is that it gets pretty darned cold. (And rolls in the hay are prickly.)

I'm crashy today but it's a better quality of crash where I can get up and do things between resting. Thanks for the encouragement - I'm stabilizing my doses for the holidays, but intend to keep upping doses when they're over.

 

[richvank]

To DrD and freddd re: supplements during testing

Hi DrD,

I suppose that woiuld depend on what the purpose of the test is. If it is to detect an "overdriven" methylation system caused byu the summation of the supplements I would expect that it would have to be tested with supplements in place. Otherwise the answer to whether it is "overdriven" is still unknown even after the test. However, this is strictly an inexperienced in that area opinion. I would ask Rich.


Just guessing based on how we know b12 supplementation/injections work relative to serum b12 tests

I don't think anybody has studied how cobalamin serum level relates to large doses of injected mb12 daily. However, if you wanted to know what the serum level was while supplementing as opposed to 2 weeks after supplementing, that is a different question and would require two tests. From the reading I have done I would suggest that it would fall 99% per day or so until down to around 3000pg/ml and then start slowing down. Nobody really knows.

Hi, DrD and freddd.

I'm with freddd on this one. I don't have experience running this panel with and without supplementation, either. My impression is that while supplementing during testing will probably change the results somewhat, they probably won't shift them a lot. I can tell you that Dr. Audhya at Vitamin Diagnostics told me that they measure SAMe and SAH in the red blood cells rather than in the plasma, because the RBC values fluctuate less in response to eating meals. I think it would be a good idea to keep track of whether you were or were not supplementing when you took the test, and also what the dosages were, so at least it will be clear what you did. Of course, if someone has an extra $600 and is willing to tolerate stopping the supplementation for a while, they could run the test both ways, and we would all learn from it!

Best regards,

Rich

 

[dmholmes]

I think it would be a good idea to keep track of whether you were or were not supplementing when you took the test, and also what the dosages were, so at least it will be clear what you did. Of course, if someone has an extra $600 and is willing to tolerate stopping the supplementation for a while, they could run the test both ways, and we would all learn from it!

Will my second test achieve this since I was not supplementing when I took the first?

 

[DrD]

Hi, DrD and freddd.

I'm with freddd on this one. I don't have experience running this panel with and without supplementation, either. My impression is that while supplementing during testing will probably change the results somewhat, they probably won't shift them a lot. I can tell you that Dr. Audhya at Vitamin Diagnostics told me that they measure SAMe and SAH in the red blood cells rather than in the plasma, because the RBC values fluctuate less in response to eating meals. I think it would be a good idea to keep track of whether you were or were not supplementing when you took the test, and also what the dosages were, so at least it will be clear what you did. Of course, if someone has an extra $600 and is willing to tolerate stopping the supplementation for a while, they could run the test both ways, and we would all learn from it!

Best regards,

Rich

hi Rich, Freddd, thanks for the responses. Now the big question: There is no established "RDA" for SAM-e. For b12, I know that I am clearly mega-dosing relative to the b12 RDA, given how low it is. Do you know if 400-600mg of SAM-e is relatively a high dose? (ie, is the typical amount of SAM-e produced in the methyl cycle in the order of mcg rather than mg?).

 

[Freddd]

hi Rich, Freddd, thanks for the responses. Now the big question: There is no established "RDA" for SAM-e. For b12, I know that I am clearly mega-dosing relative to the b12 RDA, given how low it is. Do you know if 400-600mg of SAM-e is relatively a high dose? (ie, is the typical amount of SAM-e produced in the methyl cycle in the order of mcg rather than mg?).

Hi DrD,

400-600mg/day of SAM-e is a supplemental dose. In studies done for depression they worked up to 1600mg a day. I have no idea what is normally produced by the body; more I suspect if the person is taking mb12, less if taking cyanob12 or hydroxyb12.

 

[Freddd]

INCONSISTANT EFFECTS OF INJECTED METHYLCOBALAMIN
ver 1.00 12/17/09

I wish I could say that injected methylcobalamin is consistently very effective. Unfortunately I can’t. I have found several independent causes impacting the effectiveness of injected mb12.

For a number of reasons, including a 10ml vial lost in a freezer 15months ago, my “rainy day” reserve vial that hadn’t been rotated in some months put aside when I changed my refill date, a mistake at the pharmacy of preparing an extra months worth of mb12 for me when all they were supposed to do was supply the balance of a previous order and other coincidences I had at least a vial each of a total of 5 separate batches in my hands at the same time. Over that time my pharmacy had received the crystal mb12 from at least 4 different batches from 2 different wholesalers, and I had another vial from a different source entirely. Just as when I ordered sublinguals from 10 different companies I could now do side by side comparisons.

Just as I had found some brands of sublingual mb12 to be remarkably effective and others to be barely effective or not effective at all, I found a large amount of variation in the injectable mb12. The compounding pharmacy I have my prescription with uses pure certified crystal of the highest pharmaceutical standards to prepare my prescription solution each month. They are considered a top notch compounding pharmacy, the best around. They do it the same way each month and I have never had reason to be unhappy with them professionally. Their mb12 would be consistent for a period of months and then would change suddenly and then be consistent again for some months. This was when they changed batches of crystal. I had mentioned this over and over and finally, finding the 15 month old vial allowed the answer to be found definitively when they checked their records. Each batch of solution they make up they have tested at an independent laboratory. It always tests out the same, sterile, high purity methylcobalamin and within 1% of the target concentration. Since they always did it the same way under the same conditions, there would be no cause for the variations seen in how they prepared it.

CHARACTERISTICS OF DIFFERENT BATCHES OF METHYLCOBALAMIN

1. Increased tingling and warmth in my feet within 2-3 hours following SC injection. If acne is present when I start, it clears within 3-4 days. If acne is present when starting batch increased mental clarity is noticed within 2-3 hours. Over a period of a week or so, pains in hands, arms, legs decrease and pain in numb areas of feet increases before diminishing to increased feeling and motor control.
2. No immediate effect on feet following injection. Over some days feet get slowly more numb. Pain in feet diminishes as numbness increases. Motor control of toes decreases. Pain in arms, hands and legs increases.
3. No immediate effect on feet following injection. Over some days feet get slowly more numb. Pain in feet diminishes as numbness increases. Motor control of toes decreases. Pain in arms, hands and legs increases. Acne appears on cheeks and scalp over 2+ weeks and gets worse for months.
4. No immediate effect on feet following injection. Over some days feet get slowly more numb. Pain in feet diminishes as numbness increases. Motor control of toes decreases. Pain in arms, hands and legs increases. Acne appears on cheeks and scalp over 3-4 days and gets worse for weeks to months.

WHAT AFFECTS METHYLCOBALAMIN QUALITIES ?

Exposure to light appears to affect these qualities of methylcobalamin. Before learning this I had clear colorless vials that were exposed to 1 minute or less of indirect light daily. The quality of these vials decreased during the month until about the 3rd or 4th week I started getting acne. Then the first day on the new vial the difference was very noticeably superior and the acne would go away in the first week. At this time I was not taking enough to affect my feet and they continued to deteriorate. A continual problem with methylcobalamin at 20mg/ml or 25mg/ml concentration is polynucleation causing multitudes of tiny crystals to form first fully suspended microcrystals and slowly increasing in size to a sludge restricting the draw into 31 gauge needles that would dissolve if the vial was heated gently in a cup of hot water from the faucet. If the vials are wrapped in foil blocking all light there is no deterioration from gentle reheating. As I use a 5ml vial each 3-4 days each vial only needs to be warmed only a couple of times. Even a 10ml vial heated several more times does not appear to lose any quality. Amber vials are not dark enough to prevent damage by light and the damage appears cumulative. Light causes photolytic breakdown of methylcobalamin to hydroxycobalamin. Whether it is light exposure or not that causes the difference in quality in the crystal batches the pharmacy buys is unknown. There are also unmarked differences in methylcobalamin based on what bacteria strain produces it. Light damaged methylcobalamin acts in an identical way to the different batches.

So whether the differences in batch qualities is because of light exposure somewhere along the way such as at the wholesaler or due to bacteria strain differences or something else, it is quite noticeable. The qualities from a given wholesaler are relatively consistent but then they probably buy a much larger batch which does not appear to change significantly over time. Unfortunately all this has made it quite difficult to maintain an uninterrupted period of healing longer than a few months at a time.

 

[winston]

B12

Sunday, happy to hear you are doing better. What dose of the adb12 & mb12 are you on? Do you take one B-right a day? Have you added L-carnitine or any other co-factors. I got through 1 week of B-right and it took 2 weeks to get through one Folate. On Monday I start the adb12 with a flake of a pill. It is really slow but at least I can manage the nausea.

Lena

 

[markmc20001]

warm feet

1. Increased tingling and warmth in my feet within 2-3 hours following SC injection. If acne is present when I start, it clears within 3-4 days. If acne is present when starting batch increased mental clarity is noticed within 2-3 hours. Over a period of a week or so, pains in hands, arms, legs decrease and pain in numb areas of feet increases before diminishing to increased feeling and motor control.

Hey freddd and ALL,

So when you get a good batch of MB12 injectable, you can feel it in your feet as "warm and tingling". Interesting.

I missed a few doses of AB12 the other day, YIKES! I could feel my mitochondria shut down. My bacterial infection seemed to want to come right back fast. Same feeling I got when stopping antibiotics before when I had to rely on them. However, after resuming the AB12 with a higher dose, my body seemed to snap back out of the downward spiral. I can't run out though, that is for sure, scary!!!!

Also my life seems really screwed up lately, must mean I'm getting better if I remember what you said before correctly! I think you said something to the effect, when you start getting better you realize how messed up your life is? LOL I'm there. happy holidays.

 

[Freddd]

1. Increased tingling and warmth in my feet within 2-3 hours following SC injection. If acne is present when I start, it clears within 3-4 days. If acne is present when starting batch increased mental clarity is noticed within 2-3 hours. Over a period of a week or so, pains in hands, arms, legs decrease and pain in numb areas of feet increases before diminishing to increased feeling and motor control.

Hey freddd and ALL,

So when you get a good batch of MB12 injectable, you can feel it in your feet as "warm and tingling". Interesting.

I missed a few doses of AB12 the other day, YIKES! I could feel my mitochondria shut down. My bacterial infection seemed to want to come right back fast. Same feeling I got when stopping antibiotics before when I had to rely on them. However, after resuming the AB12 with a higher dose, my body seemed to snap back out of the downward spiral. I can't run out though, that is for sure, scary!!!!

Also my life seems really screwed up lately, must mean I'm getting better if I remember what you said before correctly! I think you said something to the effect, when you start getting better you realize how messed up your life is? LOL I'm there. happy holidays.

Hi Mark,

So when you get a good batch of MB12 injectable, you can feel it in your feet as "warm and tingling". Interesting.

I should clarify. When I inject 7.5mg or more SC I feel that. A single injection does that for 4-6 hours or so then it's 3 steps backwards until the next day. When I take 4x7.5mg SC or 3x10mg SC injections it is continuous and I regain feeling. First comes pain, then much intensified tingling and hypersensitivity to touch and finally failrly normal touch. The skin and the muscles go through this and regain feeling separately. When the skin has feeling and the muscles don't it feels like I have socks bunched up under my toes all the time.

 

[DrD]

INCONSISTANT EFFECTS OF INJECTED METHYLCOBALAMIN
ver 1.00 12/17/09

I wish I could say that injected methylcobalamin is consistently very effective. Unfortunately I can’t. I have found several independent causes impacting the effectiveness of injected mb12.

[So whether the differences in batch qualities is because of light exposure somewhere along the way such as at the wholesaler or due to bacteria strain differences or something else, it is quite noticeable. The qualities from a given wholesaler are relatively consistent but then they probably buy a much larger batch which does not appear to change significantly over time. Unfortunately all this has made it quite difficult to maintain an uninterrupted period of healing longer than a few months at a time.

hi Freddd, I get mine from University Pharmacy as well. If you need any input on my batches pls let me know. I notice much less acne with these Univ. Pharm. batches (20mg/ml) then with the McGuff batches (5mg/ml). With the Univ. Pharm. batches i inject 40.0 units (8mg), 3 times a week.

 

[DrD]

1. Increased tingling and warmth in my feet within 2-3 hours following SC injection. If acne is present when I start, it clears within 3-4 days. If acne is present when starting batch increased mental clarity is noticed within 2-3 hours. Over a period of a week or so, pains in hands, arms, legs decrease and pain in numb areas of feet increases before diminishing to increased feeling and motor control.



Also my life seems really screwed up lately, must mean I'm getting better if I remember what you said before correctly! I think you said something to the effect, when you start getting better you realize how messed up your life is? LOL I'm there. happy holidays.

I also agree on this 1000%. You don't realize it, and it occurs very slowly. It is like putting on a pair of glasses, and the clarity can be quite a shock.

 

[Freddd]

hi Freddd, I get mine from University Pharmacy as well. If you need any input on my batches pls let me know. I notice much less acne with these Univ. Pharm. batches (20mg/ml) then with the McGuff batches (5mg/ml). With the Univ. Pharm. batches i inject 40.0 units (8mg), 3 times a week.

Hi DrD,

My worst experiences with acne was when I wasn't wrapping the vials in foil and it got progressively worse during the month. Also, we had a good talk on the effects of light. I don't think everybody is as careful about light exposure.

 

[_Kim_]

Start/Stop experience with adB12

On Dec. 7th, I added SAMe into the protocol and by the next day, I started to see improvements in fatigue, cognition, and mood. This continued daily and after a week, I felt consistently better than I had in months. Note, that up until I added SAMe, I had not improved one iota.

Accidentally, I ran out of AdB12 (County Life) on Dec. 13th. I quickly placed a new order to iHerb. By the 17th, I had started relapsing and by the 18th (yesterday) I had gone right back to square one. Yesterday was a very difficult day.

When I came home from work last night, there was my parcel from iHerb waiting for me. Over the next few hours, I let 9mg of AdB12 slowly dissolve. By the time that they were gone, I felt about 50% better.

Today, I am having another good day. I know it's only one stop/start cycle, but it seems that I need both SAMe and AdB12 in order for them to work. Isn't this what Freddd has been saying all along about co-factors?

 

[Freddd]

On Dec. 7th, I added SAMe into the protocol and by the next day, I started to see improvements in fatigue, cognition, and mood. This continued daily and after a week, I felt consistently better than I had in months. Note, that up until I added SAMe, I had not improved one iota.

Accidentally, I ran out of AdB12 (County Life) on Dec. 13th. I quickly placed a new order to iHerb. By the 17th, I had started relapsing and by the 18th (yesterday) I had gone right back to square one. Yesterday was a very difficult day.

When I came home from work last night, there was my parcel from iHerb waiting for me. Over the next few hours, I let 9mg of AdB12 slowly dissolve. By the time that they were gone, I felt about 50% better.

Today, I am having another good day. I know it's only one stop/start cycle, but it seems that I need both SAMe and AdB12 in order for them to work. Isn't this what Freddd has been saying all along about co-factors?

Hi Kim,

It's the cofactors that make all this quite complicated. It would be really quite straightforward if it were only about 2 or 3 items. That any substantial effect could be held up by one or more cofactors in combinations is quite confounding. As you have discovered that effect can be quite profound. These cofactor effects are not based on therory but rather on results like yours, and mine and lot's of others. I'm glad to hear that you have found some results. Now it gets easier to build on those and extend them. Good luck and keep on trying.

 

[Freddd]

Mark:
Also my life seems really screwed up lately, must mean I'm getting better if I remember what you said before correctly! I think you said something to the effect, when you start getting better you realize how messed up your life is? LOL I'm there. happy holidays.

I also agree on this 1000%. You don't realize it, and it occurs very slowly. It is like putting on a pair of glasses, and the clarity can be quite a shock.

When the fog started clearing, it was such a shock to see the total destruction that was my life after I wasn't attending to it for 16 years, all I wanted to do was stick my head back in the sand and cry. Recovering into that situation was hell. It was hard to accept. It would have been a lot easier to just die without having to see that or deal with it.

 

[DrD]

When the fog started clearing, it was such a shock to see the total destruction that was my life after I wasn't attending to it for 16 years, all I wanted to do was stick my head back in the sand and cry. Recovering into that situation was hell. It was hard to accept. It would have been a lot easier to just die without having to see that or deal with it.

hi Freddd, mine was around 5-6 years. Its amazing how the social network collapses without one seeing it. I have brought this up before, because I think it is a signficant issue for those of us who do not get immediately diagnosed and/or go through the slowly diminshing b12 levels (year after year) that are common place with this particular deficiency. I would have preferred the crash to have occurred all at once several years ago, rather than having to experience the slow erosion of mental and physical health over the last 5 years. Regardless, I am very thankful to have been diagnosed at all, and to have found this group (meaning the main thread at http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1131)

 

[teller7]

A question for Cort

I'm new to the detox therapy part and B-12 part of this. My question Cort is of all the people who have tried this let's say for example 100 people. Out of these 100 people how many actually got well???? My e-mail address is edwardscse@cbbmail.com and I would like an honest answer on this before I consider trying it.
Thank you,
Carol

 

[Freddd]

I'm new to the detox therapy part and B-12 part of this. My question Cort is of all the people who have tried this let's say for example 100 people. Out of these 100 people how many actually got well???? My e-mail address is edwardscse@cbbmail.com and I would like an honest answer on this before I consider trying it.
Thank you,
Carol

Hi Carol,

Check your email.

 

[richvank]

To David re: second methylation pathways panel

Will my second test achieve this since I was not supplementing when I took the first?

Hi, David.

I think that getting a second test after you have been doing a methylation-type treatment for a while is a good idea. We ran it every 3 months in our clinical study, and the differences in results were statistically significant at those time intervals.

The results of your second test will likely be changed by the treatment you have been doing in the meantime (which is the whole idea of doing the treatment, of course!) so I don't think it will be a direct test of the instantaneous effect of being on the treatment vs. not being on it, at a point in time, if you know what I mean. I think the two tests would have to be separated by only a few days in order to do that.

Best regards,

Rich

 

[Sunday]

It's so interesting to me to see how this protocol works a little differently for all of us, and that we each need slightly different combinations to open the lock.

Freddd, would it make sense to get in touch with the mb12 crystal manufacturers and ask what their regimen is for handling it? You might be able to give them valuable advice and get more consistent quality. Read with interest your report on the variations.

Lena, so glad to hear you are trying again with smaller doses. I agree the nausea is wearing. My doses at this point:

adb12: 6mg
mb12: 3 mg
B-Right: 2x a day

I'm traveling so I don't have other dosages as my pills are all in one bottle, but I'm also taking:

alpha lipoic acid
l carnitine fumarate
vit D
vit E
omega 3 oils
potassium
zinc
vitamin C 2000 mg
cal/mag

and I think that's it, without my panoply of bottles I'm not sure I've got them all, will check when I get home. Good luck!