B-12 - The Hidden Story

[Freddd]

Hi Fredd, I am taking Solgar Folate 800 mcg. Last night I took it at bedtime and actually went to sleep for a few hours before needing xanax to sleep. Since starting the methlyb12 have not been able to go to sleep without help. Yesterday I upped my vit D to 3000 and will add zinc today. A little better with energy today, for me there is a difference between energy and fatigue. Saturday thru Tuesday I had energy and not as bad fatigue until I started the Solgar Folate. Please don't give up on me, I believe your protocal will work for me I just need help in finding the missing pieces.

Lena

Hi Lena,

You are barely starting. Why would I give up? I know from experience that the body takes a while to heal and there are a lot of different pieces. My internist said the big problem was that it was too complicated for people to comply with. One of the big things to remember, we are aware of changes, not steadystate. The body adjusts and things seem normal. Adjustments to energy take a while to normalize. Just in dealing with fatigue and exercise, there are multiple stages. There is that "can't get going" aspect, the "it's hard to continue" midstage and recovery afterwards and they all use different systems and supplements. Until everything is going and equilibrium is reached on multiple systems you can have 5 yoyos going at once and all out of sync. My best advice is relax and find it interesting. Learn about the subtlties of how your body works. As cells heal, as muscles heal, as nervous system heals, they work differently. Further adjustments get made. There is a complicated feedback mechanism. Vit A can be very short at some stages of healing on amounts that would otherweise be fine. Same with a dozen other things so there is a lot of stop and start as various limits are reached. Fortunately side effects tend to diminish as the body adjusts. For me, the lethergy I felt with some supplements was exactly the same as I felt during periods of recovering from illness and healing and it diminshed as I actually healed.

It's good that the methylfolate helped you sleep. Good quality sleep is important. The methylfolate restored dreaming sleep to me for the first time in 20 years or so. It's done this for others. Mb12 and methylfoalte made the big differences in normalizing sleep.

On the zinc, when I increased from 15 to 65 mgs/day it was too intense to do all at once. I quartered the tablet and added 1/4 tablet a week. I was surprised at how large an effect Zinc had on fatigue and energy for me. Good luck.

 

[winston]

B12

Fredd, just wanted to add my calves are aching much more today than they have since starting the b12s. I will be without my computer till Sunday so I will check back with you then.

Lena

 

[dmholmes]

Freddd, another food-sourced multi to run by you, sorry.

This one doesn't have a lot, but it's only one a day. Is there too much folate or B in here to conflict?

Thanks,
David

 

[Freddd]

Freddd, another food-sourced multi to run by you, sorry.

This one doesn't have a lot, but it's only one a day. Is there too much folate or B in here to conflict?

Thanks,
David

Hi David,

As a whole my opinion is that the quantities of nutrients are rather low and it is lacking most of the advantageous plant substance things from food based vitamins. It is mostly a yeast extract pill. You need to understand that I take about 50 supplement pills a day of various things in order to try to optimize things. It is not possible to fit all the calcium and magnesium alone needed in one pill. Same with omega3 oils. A good 8 factor vitamin E is a horsepill all by itself. My diet is good but has never been sufficient possibly because my digestion has never appeared to work all that well. I find I need larger quantities to get enough. It appears to be working as I have never been healthier.

 

[Freddd]

Fredd, just wanted to add my calves are aching much more today than they have since starting the b12s. I will be without my computer till Sunday so I will check back with you then.

Lena

Hi Lena,

I had significant increases in pain as my nerves started working better. My leg, arms, hands and feet all felt the difference. It's sometimes a little hard to understand when one didn't realize how much loss or alteration of feeling there had been in the first place. Also, you remind me of an effect I had early on. The pain had become sharply contracted down to several small areas in my legs and then it sort of spread out, diffused, before it started healing, which was quite slow.

 

[dmholmes]

Hi David,

As a whole my opinion is that the quantities of nutrients are rather low and it is lacking most of the advantageous plant substance things from food based vitamins. It is mostly a yeast extract pill. You need to understand that I take about 50 supplement pills a day of various things in order to try to optimize things. It is not possible to fit all the calcium and magnesium alone needed in one pill. Same with omega3 oils. A good 8 factor vitamin E is a horsepill all by itself. My diet is good but has never been sufficient possibly because my digestion has never appeared to work all that well. I find I need larger quantities to get enough. It appears to be working as I have never been healthier.

True, true. I may give up on the dream of a good multi. I take a lot (for me) separately now. I was hoping to get some of the smaller stuff I'm missing like iodine, copper, selenium, manganese, chromium, molybdenum, etc...

 

[Freddd]

True, true. I may give up on the dream of a good multi. I take a lot (for me) separately now. I was hoping to get some of the smaller stuff I'm missing like iodine, copper, selenium, manganese, chromium, molybdenum, etc...

Hi David,

Perhaps a multimineral for all the small things like that? They are all such small amounts that they can easily fit in with a magnesium/calcium or something like that. Again the thing is, if you are looking for a specific form and quantity like GTF chromium or a specific selenium that can make it more difficult. And too much of these things is not good. Too much selenium casues problems just as too little does.

 

[Dreambirdie]

Hello Freddd--

I am so tired, and VERY hungry, today. Could this be attributed to the healing process of starting the b12? I should add that I have been more active since I started it last Friday.

I am taking the adb12, with the co-factors, and additional herbs/vitamins I take for adrenals, including schizandra, ashwaghanda, licorice, 50 mg. DHEA, 50 mg P-5-P, 5 mg biotin, and about 5000 mg pantothenic acid, spread out in 1 gm doses thru the day. All of the above, except the adb12, have been part of my routine for at least a year. I am not ready to start taking any methylb12 yet--except for the small amount in the B Right.

 

[Freddd]

Hello Freddd--

I am so tired, and VERY hungry, today. Could this be attributed to the healing process of starting the b12? I should add that I have been more active since I started it last Friday.

I am taking the adb12, with the co-factors, and additional herbs/vitamins I take for adrenals, including schizandra, ashwaghanda, licorice, 50 mg. DHEA, 50 mg P-5-P, 5 mg biotin, and about 5000 mg pantothenic acid, spread out in 1 gm doses thru the day. All of the above, except the adb12, have been part of my routine for at least a year. I am not ready to start taking any methylb12 yet--except for the small amount in the B Right.

Hi Dreambirdie,

This whole thing isn't a race. My adding of various things was spread out months apart as I found additional things to try. Food and B12 has some interesting things. Nausea, digestive track inflammation and anorexia are common b12 deficiency symptoms. The most peculiar one is the nutrient specific anorexia in which the person finds foods containing b12 to be distasteful and avoids them. At various stages along the way I found myself to be quite hungary after years of never feeling hungary. Some of it appears assoicated with the digestive system healing and normalizing and some with changes in the nervous system. It has been reported by quite a few people.

The tiredness also is a pretty usual occurance. My experience of it was that instead of being dully exhausted all the time, and sleeping happened if I closed my eyes and being awake was having my eyes open, something changed. I felt more normal and energetic at times and then would get very tired and sleepy. There was a contrast in both directions I hadn't experienced in decades. Also, at time it felt like I was convalescent, the tiredness that goes with that. It was all on the way to healing and fighting off infections in the earlier stages of recovery. Even today, after 6 years, I go strong all day but when I get tired, I am ready to get in bed and fall asleep very quickly. I can hardly brush and floss quickly enough sometimes.

The amount of mb12 in the B-right is probably enough if you absorb okay for normal purposes and healing. Some of the adb12 also is converted in the body. Taking your time is just fine, giving yourself some time to see what heals and what doesn't. As I say to many, have patience; it took years to get into this state, it's going to take a while to heal and recover.

 

[Dreambirdie]

Hi Dreambirdie,

This whole thing isn't a race. At various stages along the way I found myself to be quite hungary after years of never feeling hungary. Some of it appears assoicated with the digestive system healing and normalizing and some with changes in the nervous system. It has been reported by quite a few people.

The tiredness also is a pretty usual occurance. My experience of it was that instead of being dully exhausted all the time, and sleeping happened if I closed my eyes and being awake was having my eyes open, something changed. I felt more normal and energetic at times and then would get very tired and sleepy.

Hi Freddd--

I'm definitely aware that it isn't a race, just checking in about these things.

Thanks for confirming that these experiences happen to others as well. Today I've been eating for a family of four, in between naps.

P.S. One question: is my B complex, which contains cyanob12, now COMPLETELY off limits? I have 2 bottles that I wanted to use up.

 

[markmc2000]

methylation jumpstart?

Hi everybody,

This is my first post here and I stumbled across this thread after a recent experience I had with some peripheral neuropathy, folic acid, alpha lipoid acid/Lcarnitine, and methyl b-12. Sorry for the long post.

A little of my background: I have had CFS for about 20+ yrs and have recently started (jan2009) taking some antibitics, amox, doxy, flagyl with vitamins after becoming bedbound last year. I am about 37 yrs old now. The antibiotics have helped me improve to a point where I plateaued, then I added in alpha lipoid acid/l carnitine. After a few months on the ALA is when a major event transpired.

I am trying to sort out my major reaction event (need some help) and I am hopeful my reaction may have to do with methylation after reading this thread.

It started off with taking NAC and Alpha lipoid acid/ l carnitine, along with some folapro, vitamin b2-b3(atp cofactors), b-12 cyanocobalamin injections (3cc twice a week) twice a week along with the antibiotics and other vitamins.

After the first few weeks on the NAC/alpha lipoic acid, I had some gum bleeding and gum sores resolve themselves, along with some leg pain and groin pain go away.

Then about two weeks ago, I started getting these energy spikes and improved mood and libido. Kind of like starting an engine. I am positive my energy increase had to do by adding the Alpha lipoid acid/Lcarnitine.

Then just a few days ago the energy spurt faded and ended with a crash, I felt mentally drained, to the point where I could no longer respond; this is after going for 4-6 half-days straight(unheard of for me in the last couple of years).

I read some stuff and think my exaustion, near the end of my energy spurt, sounds like adrenal fatigue, but it is the response I got later, with methyl b-12, that has me scratching my head.

I tried some high dose folic acid. 1600 mcg 3x times a day for 1.5 days. Halfway thru the second day I had really high blood pressure. Then later I ended up with a numb/weak foot and leg and pins in my calf.(I have had the pins before, but not for awhile). So the high dose folic acid gave me high blood pressure and it resulted in some aggravation of existing peripheral neuropathy.

After the peripheral neuropathy flare, I searched the internet and found this thread. I took 1000mcg of arrow methyl b-12 after reading this thread. Within 45 minutes my leg pain went away and my hair kind of softened up from a really fried dandruff state. Also, my ability to shut off my urine stream improved with the tablet of b-12. My libido improved again slightly.

The next morning I took three more arrow methyl b-12 1000mcg losenges. I went to the gym for some sauna and came home and slept for 5 hrs from 11am on to 4:30. My sleep has been kinda lousy lately and I usually sleep about two hrs in the afternoon.

So this whole experience means something and I am trying to figure out how to interpret it. Any ideas what I stumbled across?

Thanks
Mark

 

[klutzo]

Update on program

Hi Freddd,
I posted on the two other threads so everyone knows we have a clean slate now and all is well. Thanks.

Here is a quick update:

1. I've been able to hold the pieces in my mouth for 1-3 hours so far. I am taking the potassium with no problem.

2. Adenosyl B12 immediately raised my energy a little, improved my mood and gave me one of the best nights of sleep I've had in ages.

3. I took the first 1/2 lozenge of Methyl B12 today. I had scary shortness of breath and a slightly depressed mood.

4. I got some of the methyl paste on my lip and it seemed to burn it and make it dark and puckered. Also had some burning under my lip the second time I put the adenosyl under it. Since then, I've been alternating locations under my lip, but will run out of places soon and am not sure how good absorption is on the sides.

5. I am having a LOT of hair loss all of a sudden. If it keeps up at this rate, I will be bald soon. I have always had long hair and this is really scaring me.

Would love advice/help on #4 and 5 please.

Thanks,
klutzo

 

[dannybex]

Hi Freddd

At various stages along the way I found myself to be quite hungary after years of never feeling hungary. Some of it appears assoicated with the digestive system healing and normalizing and some with changes in the nervous system. It has been reported by quite a few people.

As I say to many, have patience; it took years to get into this state, it's going to take a while to heal and recover.

That's good to hear about your appetite returning. I've read for years that b12 can help restore an appetite, which would be a good thing for me as well.

On a related note, we had an RN (about 75% recovered) speak to our support group the other day...she said that almost 100% of her patients were found to be deficient in hydrochloric acid. A vicious cycle as then one doesn't digest proteins and minerals, and the missing acid isn't there to stimulate release of bicarbonates/enzymes that the pancreas puts out in order to help digest the fats and carbs. I used to have to take 8 betaine HCL caps years ago...now I'm down to 3 or so per meal.

Quick question I'm sure you've been asked already -- how often should one take the b12/folic acid? And do you recommend starting with one of the b/12's before adding the other...so you can tell if one is having an effect -- or just take them both at once?

Thanks Freddd,

 

[Freddd]

Hi Freddd,
I posted on the two other threads so everyone knows we have a clean slate now and all is well. Thanks.

Here is a quick update:

1. I've been able to hold the pieces in my mouth for 1-3 hours so far. I am taking the potassium with no problem.

2. Adenosyl B12 immediately raised my energy a little, improved my mood and gave me one of the best nights of sleep I've had in ages.

3. I took the first 1/2 lozenge of Methyl B12 today. I had scary shortness of breath and a slightly depressed mood.

4. I got some of the methyl paste on my lip and it seemed to burn it and make it dark and puckered. Also had some burning under my lip the second time I put the adenosyl under it. Since then, I've been alternating locations under my lip, but will run out of places soon and am not sure how good absorption is on the sides.

5. I am having a LOT of hair loss all of a sudden. If it keeps up at this rate, I will be bald soon. I have always had long hair and this is really scaring me.

Would love advice/help on #4 and 5 please.

Thanks,
klutzo

Hi Klutzo,

3. I took the first 1/2 lozenge of Methyl B12 today. I had scary shortness of breath and a slightly depressed mood.

While the shortness of breath is a common deficiency experience, it isn't usually a result of taking mb12. However, there is often a 52 pickup effect with symptoms in which many are perceived to intensify and change in the initial days. The quickest changes that occur are in neurotransmitter generation and nerve transmission speed. The entire sensorium typically intensifies. With adb12 the neuron mitochondria are becoming more funtional and again, everything changes because of that. Moods can become more volitile very quickly. Most of these very intial startup symptoms start settling down pretty quickly. The things that are changing go through a progression, often the same symtoms as getting there but in reverse order and much faster. After my startup experience I was quite surprised to find out how mild most of such expereinces were by comparison.


4. I got some of the methyl paste on my lip and it seemed to burn it and make it dark and puckered. Also had some burning under my lip the second time I put the adenosyl under it. Since then, I've been alternating locations under my lip, but will run out of places soon and am not sure how good absorption is on the sides.

This is literally the first tiem I have heard this description. The sides under the cheek work well too. Under the tongue can certainly be included. In the early days my mouth tissues were much more easily irritated. I had burning mouth and tongue going into it. It got much more irritated and a whole new layer of tissue was generated in the first few weeks and the damaged layer was sloughed off. After that I had no problem. Others have had a similar effect to that. Some do have a degree of irritation with the acidity. However, the adb12 dosn't seem to be so acid. When I first started I had to move the tablet about every ten minutes.

5. I am having a LOT of hair loss all of a sudden. If it keeps up at this rate, I will be bald soon. I have always had long hair and this is really scaring me.

And you can't blame it on male pattern balding as my hormones changed. It had started before the crash at 39 and ended up on hold for 16 years before starting up again. When I started mb12, SAM-e and Adb12, each separately, I had a thickening of my nails and hair. There was a ridge across my nail each time where it suddenly got thicker. I also had the return of hair to some neuropathically slick lower legs. It's possible that where the hair changes thickness that there is a weak place causing it to break. That's just a possiblity. Is the hair coming out at the root or just above it?

The active b12s can cause a flurry of pentup cell reproduction on hold until it was present. This tends to smooth out within a couple of weeks. And that's how long the burning took to go away in mouth, bladder and muscles.

 

[brenda]

I had the same reaction too - increased hair loss, in fact it was coming out fast. Now it has stopped since I stopped taking the B12. I also felt as if mercury was being moved in me with increased brain fog and a feeling of inflamation around my brain stem. If that is the case then the hair loss would be explained by a decrease in function from the thyroid, the adrenals being stressed by the mercury and trying to detox it.

Afer this experience I am very cautious now about using this protocol and my kinesiology testing is no for B12.

I think that we are all different and Fredd's problem may have been rare.

 

[dmholmes]

I think that we are all different and Fredd's problem may have been rare.

After reading this book, and a good bit of this thread I'd say B12 deficiency is not rare, but under diagnosed. I'm having good results so far. And yes, we are all different.

David

 

[klutzo]

Re: update

Thanks to BRENDA for the confirmatory experience. I don't want to stop this because the AB12 helped, at least at first, and I hope it will again, but if the hair loss keeps up I will stop taking all of it to see if that ends it like it did for you. Do you still have amalgams? Do you have Lyme like I do?

- - - - - - - - - -- - - - -- - - - - -- - - - -- - - - -- - - - - - -- - - -
Thanks to FREDDD for the ideas.

I will move the pieces around in my mouth. I was trying to keep them in one place, DOH!. Once it turns to paste it's hard to move without it sticking to my tongue and getting swallowed, but I will work on it.....they don't call me klutzo for nothing though!

I can't tell for sure if the hair is breaking near the root or coming out at the root. It is full length hair though, with no broken short pieces and I don't see any stubs so I think it's all coming out. I know you can empathize with this one.

My first thought was the same as what Brenda just said....that it might be mercury affecting my thyroid, even though my hair and urine tests were within range. When I woke up on 1/9/86 with this illness, one of my symptoms was a hair loss just like this and my TSH was 4.4, but they refused to treat it back then.

I think I will cut the MB12 to 1/4 lozenge tomorrow and see if that helps. I am also taking the TMG with no problems but have not taken the Metafolin yet. If that is wrong, please let me know. Thanks.

Off to bed now.....

klutzo

 

[aquariusgirl]

Testing

Hi all

I just wanted to say that it might help to track your urine MMA as you supplement B12 and folates.

At least that way, you will know if you have a B12 deficiency and if it is improving, rather than just guessing, which can be kind of nerve wracking.

The folks on the yasko protocol are supposed to run regular tests to monitor B12 and folate markers (MMA and Figlu on a Metabolic Acid Profile from Genovations).

She also likes to track urine amino acids .. with the UAA from Doctor's Data.

And she likes to track metal excretion using regular random urine toxic metal screens.

I did Rich Van K's simplified protocol for a year without any testing, and in retrospect, I regret that I didn't do any testing, to keep tabs on my progress and mineral loss and so on.

For starters, the theory is that if you're unblocking a blocked methylation cycle you're dumping metals, and if you're dumping metals, you're probably dumping essential minerals too.. so you need to monitor them and replace as needed.

I can't vouch for the science.. but it makes sense to me.

Just wanted to put that out there for what it's worth. Of course it adds another wrinkle and more expense to the project. But insurance should defray some of the costs.

 

[Freddd]

Hi all

I just wanted to say that it might help to track your urine MMA as you supplement B12 and folates.

At least that way, you will know if you have a B12 deficiency and if it is improving, rather than just guessing, which can be kind of nerve wracking.

The folks on the yasko protocol are supposed to run regular tests to monitor B12 and folate markers (MMA and Figlu on a Metabolic Acid Profile from Genovations).

She also likes to track urine amino acids .. with the UAA from Doctor's Data.

And she likes to track metal excretion using regular random urine toxic metal screens.

I did Rich Van K's simplified protocol for a year without any testing, and in retrospect, I regret that I didn't do any testing, to keep tabs on my progress and mineral loss and so on.

For starters, the theory is that if you're unblocking a blocked methylation cycle you're dumping metals, and if you're dumping metals, you're probably dumping essential minerals too.. so you need to monitor them and replace as needed.

I can't vouch for the science.. but it makes sense to me.

Just wanted to put that out there for what it's worth. Of course it adds another wrinkle and more expense to the project. But insurance should defray some of the costs.

Hi Aquariusgirl,

Extensive and expensive testing is something many of us can't afford as because of preexisting conditions we can't get insurance. In any case MMA disappears almost immediately with adb12, a single dose often removing it as a measure of anything as it immediately occupies the mitochondria and it's lack is no longer responsible for the non-generation of ATP, unless there is a folate deficiency which slows that down. Other things may be responsible for for non-generation of ATP then. With the active b12s correction of symptoms is often so rapid that it is easy to see the changes, especially if one keeps a diary. The corrections they make are not so subtle that lab tests are needed to see progress. No guessing is usually needed as it is a naked eye event. If

 

[Freddd]

I had the same reaction too - increased hair loss, in fact it was coming out fast. Now it has stopped since I stopped taking the B12. I also felt as if mercury was being moved in me with increased brain fog and a feeling of inflamation around my brain stem. If that is the case then the hair loss would be explained by a decrease in function from the thyroid, the adrenals being stressed by the mercury and trying to detox it.

Afer this experience I am very cautious now about using this protocol and my kinesiology testing is no for B12.

I think that we are all different and Fredd's problem may have been rare.

Hi Brenda,

No, my rare problems were not the primary cause of my problem. Being a vegetarian made me dependent upon cyanob12 and then my problem came into play. However, it is a problem matched my many vegetarians who either all have my same problem or just get some of the over 200 symptoms or so that cyanob12 doesn't prevent or treat in most anybody. Rich has completely mistated the nature of my problem repeatedly and hasn't appeared to have seen my posts correcting his misunderstandings. My CFS came on post viral like many here and my FMS came on post traumatic injury, again like many here. As long as I ate meat my b12 problems were mild and not apparant to any doctor. I was able to be a professional ski patrolman and instructor. And I could ski 30,000 vertical feet per day. The tiny amount of mecury converted to methylmercury by 1mg of absorbed mb12, say the amount from a 5mg sublingual held for an hour, with 10% of it methylating mercury before it's excretion within a couple of hours would be about 1/3 of the amount present in a 3.5 oz serving of tunafish. I seriously doubt that would account for hair loss unless a tunafish sandwich does the same or worse. Hormonal changes sound considerably more possible.