B-12 - The Hidden Story

[Chris]

Connected!

Rich, many thanks--that connects an amazing number of dots in a very small space--the things that are happening in my body are beginning to make more and more sense! I think I can minimize the BP rise by taking Q10 early or late, and the Bs at mid day; and I suspect that in my case the venous pooling happens in the mid section--just learned the word "splanchic" from Sushi and others on another thread a couple of days ago.

Anyway, maybe my schedule will enable me to both have my Q10 and eat my B12 without raising my BP too much, until such time as my methylation is more fully restored. Worth a try, anyway. Thanks again, Chris

 

[Freddd]

Hi Fredd, I am in trouble! I started back on the mb12 1/4 tablet of 5mg last Wednesday after being off of it for 3 days. Had a lot of anxiety starting back. Sunday started 1/2 tablet of adb12 and my anxiety is off the charts yesterday and today. I am on 2 B-right a day. I don't know what to do, if I go off all of the B's I get really sick and severe jumpy legs and severe anxiety. This has happened both times I went off and as soon as I put a little mb12 under my lip I feel better. Do you think I have a B12 deficiency? What am I going to do? Please help me.

Lena

Hi Lena,

For starters, anxiety is a very common b12 deficiency symptom. Many symptoms intensify and switch around with taking b12 and starting to heal. People who have anxiety tend to react with more anxiety as things change with b12. I wish I knew why. That is quite consistant in all this. Same is true with other mood items and generally many symptoms. Things don't go from years of damage to healed in one step. Instead it goes from one damaged out of balance state to another until finally one thing or another heals after weeks or months and drops off the list. I had 185 symptoms when I started. After a year it was down below 100. After 4 years down to 27 on the same list. Starting and stopping things faster than the body can adjust throws it into disarray. Healing starts and healing stops and starts and stops. You retrace the first step over and over again. Everything I've seen says that people without symptoms of deficiency have no reactions at all to active b12s. The symptoms in question are those that over time heal with active b12 and cofactors. It's a bumpy ride. It was for me and it is for a lot of people. I don't know what else to say. There are over 600 functions that b12 performs according to some researchers. As Rich points out getting the depleted or stalled methylation cycle going again restarts immune system and many other functions. Many people have depression relief when that happens. I had relief from lifelong depression that nothing else helped with mb12 and adb12. Some get more anxious. I had a feeling that could be interpretted as anxiety when I started l-carnitine fumarate which get the mitochondria really going on ATP production. However, I didn't interpret it as anxiety. It was just an enegetic feeling. During startup I had problems with CoQ10 raising my blood pressure. Later on it didn't do that after my body had stabilized on the mb12. It's a complicated system. There are a lot of things that are not known or not fully understood, espically when taking actual active b12s as they have not been researched to the same extent as the inactive. Good luck.

 

[richvank]

Hi Rich

wow. Thanks for that really comprehensive answer. I understand it better now. Do you think the POTS will ultimately be cured with proper methylation and lots of mB12? I understand that the adrenals play a key role here, but I am puzzled because I am on full adrenal hormone replacement (prednisolone and Florinef) - at higher doses than most, and it doesn't appear to have any effect on the POTS, which is worst in the mornings, when I have taken my adrenal support for the day. The tachycardia eased when my blood pressure was higher from the combination of mB12 and CoQ10 - I could stand with a normal heart rate without feeling panicky and like I had to sit down all the time - but why would high blood pressure ease the POTS?

Any insight would be great. POTS is so frustrating to live with, and I am probably more high functioning than most.

thanks again

Nicola

Hi, Nicola.

Yes, I do think that restoring the methylation cycle will allow glutathione to come back up to normal, and that will restore the blood volume to normal, and will also restore the normal dynamic function of the HPA axis. I think it will also correct the diastolic dysfunction. When all of these have been corrected, the POTS should be no more. In your case, since you are on full adrenal hormone replacement, it may be difficult and time-consuming to get off the adrenal hormones after these issues are corrected. (I'm assuming that you don't have Addison's disease. If you do, you will likely have to stay on the adrenal hormones.)

The reason that POTS is helped by higher blood pressure is that the higher blood pressure enables blood to be transported to the brain, against gravity, more readily. If the brain is getting enough blood supply, it won't trigger the adrenaline rise that causes POTS. The latter is a backup mechanism to save the brain if the cardiac output is too low to supply blood to it at a normal heart rate.

Rich

 

[Sunday]

Rich, thanks for the detailed info, that does help clarify things. I find it really helpful to have all the context I can get. It also really helps me appreciate the complexity of our bodies and how they work.

Lena, this is maybe a silly suggestion but I'll make it anyway: would it help to start on the 1,000 mcg mb12s instead of using the 5,000? Even a quarter of a 5,000 tab is more than I take, and I've been building up for two weeks. I started out with 1,000 mcg taken in 1/3 tabs (I meant to start with 1/4 but just couldn't cut it right). At two weeks or so of mb12, I'm now taking 2 1,000 mcg tabs 1 tablet at a time. Freddd has often said that the first doses create the biggest difference (proportionately) in our nervous systems; maybe using 1,000 mcg tabs would allow you to keep your dosage up but spread it out a bit more, so you don't have to keep going through the same startup again?

Obviously I'm new at this so Freddd would be the best judge. I started out really small because I didn't know what would happen, and I'm continuing to bump up in small increments.

As Freddd says, it is a bumpy ride, doing this. I have the sense that I really am getting better, which helps with all the moods and depression and intense tiredness, the eczema and brainfog and remaining OI (it's definitely getting better, or at least less frequent). But that doesn't mean I'm not getting depressed and discouraged and yes, freaked out when I get things such as tachycardia. Have you ever done anything that was really hard and uncomfortable and yet kept on? I think many many days of walking, tired, in rain with a heavy backpack, kind of gave me good training for this. Also working on large and/or difficult projects where I thought the end would never be in sight but I had to keep on plugging away anyway. Transferring what I learned from these experiences really helps me. So do the stories and info on this forum.

 

[Sunday]

David, I'm not sure if it's the same thing but my reaction to mb12 has been a lot of tiredness - as differentiated from crashiness, though sometimes the line's a little blurry. It feels the way I used to feel after, say, an 8-mile walk in the mountains. But I don' t have that pre-crash feeling that some gremlin is underground pulling at nylon ropes attached to my knees, which has been my "better get somewhere where you can lie down immediately" warning signal.

I'd be curious to know how long you have been doing the active B12 regimen. I'll post my in-progress dosages to add to the pallette of info, don't know how useful they are:

A, ran out, was taking 10,000 IU/day
C - time release 1,000 mg (2)
D3 - 2,000 IU (1)
E - mixed tocopherols - 400IU (1)
lecithin - 1,200 mg (1)
alpha lipoic acid - 100 mg (1)
potassium - 99 mg
calcium-magnesium-D3 - 500 mg calcium/250 mg magnesium (1)
krill oil (ran out, but was taking 2 large capsules a day)
zinc - 50 mg
mb12 - 1 mg (2)
adb12 - 3 mg (2)
methylfolate - 400 mcg (just added today; 1/2 an 800 mcg tab)

I also make it a point to eat something probiotic - miso, yogurt, or kefir - most days.

 

[dmholmes]

David, I'm not sure if it's the same thing but my reaction to mb12 has been a lot of tiredness - as differentiated from crashiness, though sometimes the line's a little blurry. It feels the way I used to feel after, say, an 8-mile walk in the mountains. But I don' t have that pre-crash feeling that some gremlin is underground pulling at nylon ropes attached to my knees, which has been my "better get somewhere where you can lie down immediately" warning signal.

I'd be curious to know how long you have been doing the active B12 regimen.

For the last 5 days it's been the "better get somewhere where you can lie down immediately" once a day. Have to sleep it off for an hour or so. I think it might be one of the Bs since I'm not taking B-Right. I think my fatigue got worse after going gluten-free this time last year, might be missing the fortified Bs from cereals and breads. I got some B1 today to see if it makes a difference, didn't crash today but I only did a 1mg mb12.

I've been doing active B12 for a couple of months. Fatigue has been much better until this last bout. Orthostatic intolerance is much improved. Brain fog is way better. Anxiety is better.

 

[Sunday]

My sympathies about "better get somewhere where you can lie down immediately". It's a discouraging feeling.

I realized I forgot to list my twice-daily B-Rights on my dosage list: I'd like to lay that up to brain fog, but I'm not sure if I qualify for that right now; it might be just plain old forgetfulness.

I don't know if this is the culprit in your case or not, but I just checked one of my references and found some adverse effects for thiamine (B1): flushing, shortness of breath, and rapid heartbeat (tachycardia). Also allergic reactions. None of the other B vitamins mentioned in this ref had any adverse effects relating to the heart, but of course there may be information that isn't mentioned. Also even if you can be sure thiamine is the culprit, it would be hard to know if you're getting a deficiency reaction or whether the B-Right thiamine is especially hard on you for some reason. Would it be possible (or desirable) to check your reaction to a tiny bit of thiamine, on its own?

 

[markmc20001]

hi Freddd, Rich, everybody

I've been experimenting with the methyl b12 losenges a bit and so far I would say that things are improving for me. I kind fo fell off the wagon by doing something that stripped my b12 and have yet to get back to where I was, but none the less, I think b12 is helping an hope to get back to where I was a few weeks ago on it.

some of the improvements were: I have had nights of improved sleep and less post exertional malaise. I think it improves my libido and also makes my hair soft and stop falling out. I have had a temproarily had a setback, but it seems like the b12 is helping, if I can get back on the band wagin again.

I think I am having a difficult time getting enough b12, even by taking three 2500mcg pieces of Mb12 a day. But, I just added some ab12 and had some major jitters and wired feelings. It feeels like more is better up unitl this point.

Also, I did a quick run of Betaine HCL (the kind for digestion) it kind of set me back a bit I think. I noticed my sex dirve drop off quite rapidly and my sleep get screwed up. Makes sense becuase I just found a really good article on b12 that says stomach acid amonst other things may affect b12.

It also mentions abx will, and garlic, onion, radishes will screw up b12....Wholly guacamole! all my favorite stuff! Specially the abx! I'll try and get off those if I can. and see where I end up.

Here is the article:

http://www.living-foods.com/articles/b12issue.html

Mark

 

[dmholmes]

I don't know if this is the culprit in your case or not, but I just checked one of my references and found some adverse effects for thiamine (B1): flushing, shortness of breath, and rapid heartbeat (tachycardia). Also allergic reactions. None of the other B vitamins mentioned in this ref had any adverse effects relating to the heart, but of course there may be information that isn't mentioned. Also even if you can be sure thiamine is the culprit, it would be hard to know if you're getting a deficiency reaction or whether the B-Right thiamine is especially hard on you for some reason. Would it be possible (or desirable) to check your reaction to a tiny bit of thiamine, on its own?

Hi Sunday, thanks for the info. I picked up Solgar 100mg B1 yesterday, had no problem with it so far. It is Thiamin Hcl B1, B-Right contains 25mg of Thiamine Mononitrate B1. Not sure if it makes a difference.

 

[dmholmes]

Also, I did a quick run of Betaine HCL (the kind for digestion) it kind of set me back a bit I think. I noticed my sex dirve drop off quite rapidly and my sleep get screwed up. Makes sense becuase I just found a really good article on b12 that says stomach acid amonst other things may affect b12.

Stomach acid definitely affects B12 absorption. In my case not enough acid, so betaine HCL helps. It hasn't had the drawbacks you mentioned for me.

 

[winston]

B12

Hi Sunday, what a roller coaster ride I have been on, I am learning a lot of what not to do when starting the B12s. The first time I started the B12s it was fairly easy until I was having such great results that I upped both adb12 & mb12 too fast at the same time and went into big time detox. Lowered the dose and it would not stop the detoxing so I quit. Three days later my body is feeling like it just came off a big-time drug big withdrawal symptoms so I started back up with worse start-up symptoms. Stopped again and my body is screaming for B12s and when I start a mb12 it settles down for a day and then the start-up begins again even worse than before. Fredd is right when you start & stop B12s it throws your body into disarray. Healing starts & stops. Extreme anxiety was one of my very first symptoms years ago when I first got sick. This is not anxiety where you feel nervous but an anxiety that you feel like you are going to loose yourself at anytime. Yesterday I used xanax two times during the day, Sunday I needed it four times, so maybe I am making progress. See what happens today.

Lena

 

[dmholmes]

My sympathies about "better get somewhere where you can lie down immediately". It's a discouraging feeling.

I completely forgot that I stopped my zinc supplement last week also, based on high zinc reading from a hair elements test. Could be related to the fatigue I experienced.

 

[markmc20001]

Stomach acid definitely affects B12 absorption. In my case not enough acid, so betaine HCL helps. It hasn't had the drawbacks you mentioned for me.

thanks for the feed back David.

I understand there are two types of betaine, betaine (trimethylglycine), and Betaine HCL. You have any luck with the trimethylglycine?

I seem to have really good luck with the Alpha lipoic acid and L carnitine. I added those before the B12 and they really kicked things up a notch for me. However, they needed NAC to work for me. The NAC seemed to make my feet burn and dry out my hair, but made me feel great. You have any experience with burning feet and bladder and what-not realted to the NAC?

 

[dmholmes]

thanks for the feed back David.

I understand there are two types of betaine, betaine (trimethylglycine), and Betaine HCL. You have any luck with the trimethylglycine?

I seem to have really good luck with the Alpha lipoic acid and L carnitine. I added those before the B12 and they really kicked things up a notch for me. However, they needed NAC to work for me. The NAC seemed to make my feet burn and dry out my hair, but made me feel great. You have any experience with burning feet and bladder and what-not realted to the NAC?

I haven't tried trimethylglycine (TMG) yet, but I believe those betaines serve completely different purposes.

Based on Fred's bad experience with NAC I won't be touching it.

 

[winston]

B12

Hi Fredd, everyday a new problem. I started the adb12 a 1/2 tablet on Sunday and on Monday nausea started and today the nausea is pretty bad. What should I do? Lower it to 1/4 tablet or stop it for a few days? I am sorry I am such a difficult sick person.

Lena

 

[winston]

B12

Hi Fredd, Looking through my daily notes I have come to a conclusion that all along what is causing me the most anxiety and of course all the nausea is the adb12. Each time I have quit this protocol it was due to extreme nausea and shaky legs and severe anxiety. Each time I start back on the treatment I start with mb12 and B-right and have start-up problems but the big problems always start when I start taking the adb12. I am wondering if I should wait several days to take the adb12 or tomorrow only take a flake of the adb12 & see what happens.

Lena

 

[altce]

alpha lipoic acid

Who else here has taken alpha lipoic acid supplements? Do you take it along with vitamin B12 sups? Are there any known interactions that you've heard of?

-altce

 

[SoyCoffee]

Reply to Kim

That's good to know SoyCoffee (great name btw). I can handle a little warmth if that's the worst of it. Are you noticing any symptomatic improvement from the B-12 protocol?

ETA - I just noticed that was your first post here. Thanks for taking the time to do so. And welcome aboard!

Hi, Kim
I'm just checking back today. I usually inhabit the "wrongdiagnosis.com" B-12 Deficiencies forum.
Yes, I have noticed a lot of symptomatic improvement from the active B-12s. First of all, I started with a very good substrate of supplements, although sometimes not very good brands.
Then, on Freddd's specific advice, I started AdB12 in *eighteenths* of a tablet or so! Actually, I divided a tab into sixths of various sizes, and started with the smaller ones, every 45 minutes or so.
Then, after about five days, I added the folate, and the mb12 a day later -- I couldn't wait.

Improved: My recent definite hand tremor just got up and left, within three days, never to return.
I had a return of muscle pain (Fibromyalgia symptom) that has decreased and is nearly gone.
I also had some wild swings of IBS symptoms, with a return of pain in the mornings before having a BM, that has smoothed out. I've taken a chance, every once in while, on having a frozen Panini covered with cheese. I take about half of the cheese off, then cook it, and so far it has gone well. I have too many things to do to risk a pizza, but maybe someday in the next 6 months.

This I can take to the doctor: she knows that recently, because of a fall and concussion, I suddenly needed to double my daily amount of medicine for the pain of neuropathy in my legs. Almost overnight, I went from 1200 mg/day of Gabapentin/Neurontin to 2400, and was constantly on the phone to her office because I was running out on the 1800, then 2100, mgm doses they were phoning in. The insurance covering my prescription would sometimes not allow refills.
Then, just as I managed to get enough, and everyone was on board, I started the active b12 protocol. Five weeks later, and I take less than 1200 mg/day. By the time I see my doctor, I think it will be down to 300 to 600 mgs/day. I now have a closet-full of Gabapentin/Neurontin. It's a medication for nerve pain.

So that will be an objective measure of the effectiveness of the protocol.

I have not had anxiety. I had some bad days with malaise, connected to increasing dosages. Now the active b12s are:

adb12 3,000 mcg (4) 12,000 mcg/day
mb12 5,000 mcg (4) 20,000 mcg/day
Solgar Folate 800 mg (1)

I'm also taking a very long list of supplements.

Following Freddd's post on l-Arginine, have cut down from 5.2 mg/day to none, over the past week.

By now, my numb feet and lower legs have a return of feeling and balance -- which does fade, though the breakthroughs of pain in my toes have not. My shins still feel numb. I still seem not to be able to feel a pebble under my foot, so there's some loss of sensitivity.

I caught myself feeling *happy* one day. While I am not normally depressed, I guess the normal state has been what one might call 'low mood,' or chronic mild dissatisfaction. This odd unusual happiness was the sense that all is right with me and my world.

Brain fog has lifted. I've been more able to do professional work, but that has a long way to go. I did experience a brief return of executive functions, which I would describe as getting back "two-track" thinking for an extended length of time in one day. Then it faded for a week, then came back not so clearly, but by now, when it's critical to be able to do it, I often can.

In the time since starting the active b12's, I've learned to use Facebook, and am enjoying the brief messages and contacts. So life is more social.

I spent a day learning about XMRV, made the connection between Dr. DeFreitas's 1991 research / patent application isolating a "non-C" retrovirus -- everything then known was a "C" retrovirus -- and then discovered that Dr. Mikovits at the Whittemore-Peterson Institute was already acknowledging the possible connection.

So it's been exciting.

I hope you are feeling changes fairly quickly and happily.
Much success with the active b-12 protocol.
SoyCoffee

 

[_Kim_]

Hi, Kim
I'm just checking back today. I usually inhabit the "wrongdiagnosis.com" B-12 Deficiencies forum.

I should probably sign up there as well.

Yes, I have noticed a lot of symptomatic improvement from the active B-12s. First of all, I started with a very good substrate of supplements, although sometimes not very good brands.
Then, on Freddd's specific advice, I started AdB12 in *eighteenths* of a tablet or so! Actually, I divided a tab into sixths of various sizes, and started with the smaller ones, every 45 minutes or so.
Then, after about five days, I added the folate, and the mb12 a day later -- I couldn't wait.

That's good advice on the adB12 startup protocol. I will do the same. My shipment from iHerbs is slated for delivery on Friday. I've already been taking most of the general supplements, but I'll do a few days of adding B-right, ALA, and potassium before I start the adB12 next week. I'm so impatient, but I see the wisdom in seeding the terrain with the basics first.

Improved: My recent definite hand tremor just got up and left, within three days, never to return.
I had a return of muscle pain (Fibromyalgia symptom) that has decreased and is nearly gone.
I also had some wild swings of IBS symptoms, with a return of pain in the mornings before having a BM, that has smoothed out. I've taken a chance, every once in while, on having a frozen Panini covered with cheese. I take about half of the cheese off, then cook it, and so far it has gone well. I have too many things to do to risk a pizza, but maybe someday in the next 6 months.

This I can take to the doctor: she knows that recently, because of a fall and concussion, I suddenly needed to double my daily amount of medicine for the pain of neuropathy in my legs. Almost overnight, I went from 1200 mg/day of Gabapentin/Neurontin to 2400, and was constantly on the phone to her office because I was running out on the 1800, then 2100, mgm doses they were phoning in. The insurance covering my prescription would sometimes not allow refills.
Then, just as I managed to get enough, and everyone was on board, I started the active b12 protocol. Five weeks later, and I take less than 1200 mg/day. By the time I see my doctor, I think it will be down to 300 to 600 mgs/day. I now have a closet-full of Gabapentin/Neurontin. It's a medication for nerve pain.

So that will be an objective measure of the effectiveness of the protocol.

I have not had anxiety. I had some bad days with malaise, connected to increasing dosages. Now the active b12s are:

adb12 3,000 mcg (4) 12,000 mcg/day
mb12 5,000 mcg (4) 20,000 mcg/day
Solgar Folate 800 mg (1)

I'm also taking a very long list of supplements.

Following Freddd's post on l-Arginine, have cut down from 5.2 mg/day to none, over the past week.

By now, my numb feet and lower legs have a return of feeling and balance -- which does fade, though the breakthroughs of pain in my toes have not. My shins still feel numb. I still seem not to be able to feel a pebble under my foot, so there's some loss of sensitivity.

I caught myself feeling *happy* one day. While I am not normally depressed, I guess the normal state has been what one might call 'low mood,' or chronic mild dissatisfaction. This odd unusual happiness was the sense that all is right with me and my world.

Brain fog has lifted. I've been more able to do professional work, but that has a long way to go. I did experience a brief return of executive functions, which I would describe as getting back "two-track" thinking for an extended length of time in one day. Then it faded for a week, then came back not so clearly, but by now, when it's critical to be able to do it, I often can.

In the time since starting the active b12's, I've learned to use Facebook, and am enjoying the brief messages and contacts. So life is more social.

I spent a day learning about XMRV, made the connection between Dr. DeFreitas's 1991 research / patent application isolating a "non-C" retrovirus -- everything then known was a "C" retrovirus -- and then discovered that Dr. Mikovits at the Whittemore-Peterson Institute was already acknowledging the possible connection.

So it's been exciting.

Wow - those are amazing improvements. I'm so pleased that you mentioned improvement with mood and cognitive functioning. I so want to be happy and smart again

I hope you are feeling changes fairly quickly and happily.
Much success with the active b-12 protocol.
SoyCoffee

Thank you so much for this post. It's exactly the kind of encouragement I needed to hear today. You're a doll!

 

[Freddd]

I've been experimenting with the methyl b12 losenges a bit and so far I would say that things are improving for me. I kind fo fell off the wagon by doing something that stripped my b12 and have yet to get back to where I was, but none the less, I think b12 is helping an hope to get back to where I was a few weeks ago on it.

some of the improvements were: I have had nights of improved sleep and less post exertional malaise. I think it improves my libido and also makes my hair soft and stop falling out. I have had a temproarily had a setback, but it seems like the b12 is helping, if I can get back on the band wagin again.

I think I am having a difficult time getting enough b12, even by taking three 2500mcg pieces of Mb12 a day. But, I just added some ab12 and had some major jitters and wired feelings. It feeels like more is better up unitl this point.

Also, I did a quick run of Betaine HCL (the kind for digestion) it kind of set me back a bit I think. I noticed my sex dirve drop off quite rapidly and my sleep get screwed up. Makes sense becuase I just found a really good article on b12 that says stomach acid amonst other things may affect b12.

It also mentions abx will, and garlic, onion, radishes will screw up b12....Wholly guacamole! all my favorite stuff! Specially the abx! I'll try and get off those if I can. and see where I end up.

Here is the article:

http://www.living-foods.com/articles/b12issue.html



Mark

Hi Mark,

With sublinguals no foods screw up absorbtion. If you allowe them to linger for 45-120 minutes you will absorb enmpough that very little can screw them up. Right now the long list of what can screw up the b12 is glutathione and precursors and arginine.

I eat plenty of garlic and onions. No problem at all unless those around you don't eat them too. Baked garlic on good bread - yummy.

Do you have any ideas of what might have casued the setback? A lack of methylfolate can do so.