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B-12 - The Hidden Story

Sunday

Senior Member
Messages
733
Lena, I can't answer that question exactly but I can tell a story about B vitamins and supposedly incurable nervous-system disease. I knew someone who had shingles, a very bad case. Though nerve pain doesn't respond to opiates, her doctor had her on dangerous amounts for the pain, and she was scared. She applied to be in a study on shingles, since nothing was working, she was in pain, and she couldn't sleep.

At the time I happened to be indexing a series of medical studies on nerve pain. Putting together some knowledge from there with my knowledge of supplements - B vitamins are good for nerve illnesses - I recommended that she lay off the opiates (which don't hit receptors for nerve pain, and were scaring her anyway) and try B vitamins; it couldn't hurt.

Her results were so good that she got off the list for the study, got her ability to sleep back, and basically got her life back.

So even if there is new evidence on the cause of CFS, it doesn't have to mean that anything is different for us, practically speaking. My guess is what B vitamins (in the case of Freddd's protocol, a very specific regimen of B vitamins) do is give the nervous system what it needs to heal itself. It's certainly more than I've seen medical science offer for nerve disease.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd, what is your opinion on this new breakthrough XMRV? Does that mean their is no B12 problem that we have a neurovirus? Right now I don't know what to think.

Lena


Hi Lena,

what is your opinion on this new breakthrough XMRV?

I don't know yet. I have a lot of reading to do and there is very little that says anything.

Does that mean their is no B12 problem that we have a neurovirus?

No. It doesn't change a thing in a pragmatic sense. The problem is whatever it has been all along and still reponds to the active b12s. In fact it puts the emphasis right on methylb12 as that is the form that encourages neurological healing across many causes of damage. I had my "crash" years start with a suspected viral infection. Lots of people in the area all had it at the same time. My wife did too. She got better in 6 months. I didn't. This and other experiences led me to a hypothesis that the b12 crash can be triggered by all sorts of things. In my experience they include viruses, bacteria, vaccine, traumatic injury and maybe other stressors that tip a person over the edge so far that normal amounts of b12 are not enough to bring a person back.

The only time I came back pretty well on food alone was when I was on the ski patrol. I was eating 3 times as much per day as I normally eat, exercising hard at 40 below. Included in this diet was more than a pound of meat a day, 3-4 times usual. I ate like the proverbial lumberjack and took in 3 times the nutrients I normally do.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Lena, I can't answer that question exactly but I can tell a story about B vitamins and supposedly incurable nervous-system disease. I knew someone who had shingles, a very bad case. Though nerve pain doesn't respond to opiates, her doctor had her on dangerous amounts for the pain, and she was scared. She applied to be in a study on shingles, since nothing was working, she was in pain, and she couldn't sleep.

At the time I happened to be indexing a series of medical studies on nerve pain. Putting together some knowledge from there with my knowledge of supplements - B vitamins are good for nerve illnesses - I recommended that she lay off the opiates (which don't hit receptors for nerve pain, and were scaring her anyway) and try B vitamins; it couldn't hurt.

Her results were so good that she got off the list for the study, got her ability to sleep back, and basically got her life back.

So even if there is new evidence on the cause of CFS, it doesn't have to mean that anything is different for us, practically speaking. My guess is what B vitamins (in the case of Freddd's protocol, a very specific regimen of B vitamins) do is give the nervous system what it needs to heal itself. It's certainly more than I've seen medical science offer for nerve disease.

Hi Sunday,

I used to have a lot of neuropathic pain. I took Dilantin for it and it helped considerably. After 9 months on the mb12 I was able to discontinue the Dilantin and most of the neurological pain was gone. I still have some but only that associated with Subacute combined degeneration which is partially reversed. It is my pivot point symptom. My nerves improve when I have a good batch of b12 and deteriorate when it has too much hydroxyb12 or something in it.
 
Messages
24
Hi freddd

I saw, by accident, a very old post of yours in a thread in Wrong Diagnosis, where it said you were on the dilantin and many other strong meds. You were really a sick duck. Could you exercise or exert at all at that time?

Beckster
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I saw, by accident, a very old post of yours in a thread in Wrong Diagnosis, where it said you were on the dilantin and many other strong meds. You were really a sick duck. Could you exercise or exert at all at that time?

Beckster

Hi Beckster,

The piece I wrote for here dispapeared into cyberspace with a token time out.

http://forums.aboutmecfs.org/showthread.php?p=6557#post6557

I wrote up something similar for another post so this should answer your question.
 
I

imgeha

Guest
start up symptoms

Hello Freddd

I have a general question about start-up symptoms. Would it be correct to say that these are strongest where the need for healing is greatest? My biggest symptoms is POTS - postural orthostatic tachycardia. Since starting the active B12s and the metafolin the POTS has got worse. I have backed off a little on doses, but am prepared to keep going if this is a normal reaction and necessary for healing. It is pretty uncomfortable though, and tiring.

Should I stay at current doses (1 adenosyl B12 lozenge, 3mg methyl B12 and 1/4 tablet of metafolin) until these symptoms ease, or try to increase?

thanks

Nicola
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hello Freddd

I have a general question about start-up symptoms. Would it be correct to say that these are strongest where the need for healing is greatest? My biggest symptoms is POTS - postural orthostatic tachycardia. Since starting the active B12s and the metafolin the POTS has got worse. I have backed off a little on doses, but am prepared to keep going if this is a normal reaction and necessary for healing. It is pretty uncomfortable though, and tiring.

Should I stay at current doses (1 adenosyl B12 lozenge, 3mg methyl B12 and 1/4 tablet of metafolin) until these symptoms ease, or try to increase?

thanks

Nicola

Hi Nicola,

I have a general question about start-up symptoms. Would it be correct to say that these are strongest where the need for healing is greatest?

Maybe. Let me explain. There are two sets of symptoms, in one way of characterising them; functional and damage. Of course some of the funtional symptoms are becausof damage. But others are because the system is out of gas in a manner of speaking. So let's look at adb12 as it has a much smaller universe of what it does. Because of what I didn't know, I did not take adb12 at the same time as I started mb12, but rather 9 months later. While it slowed down my healing it was very informative. When I took mb12 I had just enough conversion to adb12 that the burning lactic acid type muscle pain diminished and went away in 10 days.

I had energy back in 60 minutes. It seemed huge at the time. It was repeated daily for several months but not as strong except when I swtched to an ineffectve brand and all symptoms started returning in 3 days. The abnormal extreme fatigue of 16 years duration was gone. The inrush floored me for that first hour. But as I added other pieces to the puzzle, adb12 and carnitine, I had even larger total increases in energy. Mb12 started giving me energy back, but in 9 months not enough converted to allow healing and growth of muscles and it did not correct all the muscle problems.

The first few months on the adb12 did that. It also restored exercise tolerance and carnitine even more so. With the adb12 there was another inrush of energy. The muscles started loosening. The tight contractions stopped. The whole body spasms had already stopped with the mb12 and this final change allowed me to stop Dilantin. The 18 tender points started becoming less tender. Exercise became easily tolerated and caused muscle growth. It took three years for my thigh muscles to return from being a ridge the thickness of my finger to filling my thigh. With exercise the muscle pain diminished and largely went away. The only places it didn't go away was where damaged neurology ruled.

My heart arythmias, just about fainting on standing, things like that slowly faded away. The only really clear point of notice was when I increased b-right to twice a day, after most of the other things had been started, the last of the arythmias went away immediately. They had diminished from multiple episodes per minute to occasional. Last time I tested it, 3 days on B-right once a day and they were back. I can stand up just fine now. That took a while.

Since starting the active B12s and the metafolin the POTS has got worse.

I would say that they are definitely being affected by the vitamins. In my experience everything affected right off started correcting. As the swings and changes quieted down the things immediately affected tended towards normal. The things I still have trouble with were unaffected by the initial doses.

When the body has adjusted to a malfunctioning situation it makes certain accomodations. When the chemistry is restored to what will allow it to function normally the accomodations go through a period of being too much and the body has to reach a different equilibrium. I and many others have experienced this on hundreds of symptoms. It's like the volume knob on the sound has been turned all the way up to makeup for a low volume source. When you put in a recording made at a higher volume, you get blasted with sound until the volume can be turned down to normal. This is what seems to be happening in our bodies as the b12s start generating stronger nerve signals and more neurotransmitters and more energy.

Making new cells is another matter. The red blood cells can be entirely replaced in 90 days. An inflamed burning bladder or tongue can heal to no pain in 10 days but full healing takes longer. In 6 months my digestive system healed enough that I could tell that milk specifically was a problem. Before that everything was the same, a problem. It took three years or more for my digestive system to fully heal.


Should I stay at current doses (1 adenosyl B12 lozenge, 3mg methyl B12 and 1/4 tablet of metafolin) until these symptoms ease, or try to increase?


Are you taking zinc, A&d, E, C, magnesium and calcium and b-right twice a day? I would consider these more important than increasing the ones you are currently taking. They are all truely critical for healing.

If you do increase the dose, I would do it by taking a second dose of folate and maybe mb12 if it doesn't interfer with sleeping, later in the day. Because of the short serum halflife of b12 and folate a second dose will just level out the serum level a bit but not increase it significantly. The adb12 is most likely entirely adequate until later after everything has staiblized and you try out different balances between mb12 and adb12. It's because of the short serum halflife of the various b vitamins that a second b-complex at a different time can help so much.

My experience is that all things things diminish after an equilibrium is reached. As long as there is an increase in tissue saturation occurring change keeps happening and being felt and the body has to keep readjusting. If you want to try something, consider taking a 1mg mb12 more or less continueously all day, as one is gone add another. As most startup symptoms don't have a linear increase in intensity, it can bring you up to equilibrium more quickly. Things stop increasing in intensity 5 minutes after chewing and swallowing the tablet so you can control the intensity if it gets to be too much. As soon as I did that, the daily intensity of startup started diminishing the next day and was gone in a week
.
 

Sunday

Senior Member
Messages
733
adb12: I'm a fan

I know the above posts are ones I want to come back to, but for now I just want to report my own reaction to my first adb12.

Since I'd had a mild but distinctly bad reaction just to taking the B Right, I was expecting that adb12 would be something I'd just have to soldier through. I've been crashy anyway today (yeah, yeah, I shouldn't have stacked that wood, but it needed to be done), so I thought I might as well get some use out of the crashiness. I started with 1/4 tab of adb12.

A few minutes after the lozenge was in my mouth, I felt my mind going clear; I was still tired, but the brainfog part of my crash was blowing away in a brisk wind. A couple of hours later, I still felt mildly better. I thought I'd try 1/2 tab.

And on 1/2 tab suddenly I'm feeling my feelings again: colors are richer, my skin has more sensation, and I just cried at a really sappy TV show. I don't know if this will last, but I'm really grateful for it happening right now.

I may have indulged myself with this description. But I'm hoping if anybody is reading this thread to see what this is and if it works for other people (the way I did) - I'm hoping they'll be encouraged to know that some of it may be rocky, but sometimes it may be really beautiful.
 

dmholmes

Senior Member
Messages
350
Location
Houston
A few minutes after the lozenge was in my mouth, I felt my mind going clear; I was still tired, but the brainfog part of my crash was blowing away in a brisk wind. A couple of hours later, I still felt mildly better. I thought I'd try 1/2 tab.

Great to hear! My brain fog has been almost non-existent since starting adb12 and mb12, not sure which one or if both helped.

David
 

dmholmes

Senior Member
Messages
350
Location
Houston
Freddd, got results of a stool test which was taken about the time I started active b12s. Any relation to deficiency?

- 3 types of gut bacteria that are unhealthy, but common.
- Low gut immunity.
- Inflammation marker.
- Chymotrypsin marker low, <3. Normal above 9.

Thanks,
David
 

klutzo

Senior Member
Messages
564
Location
Florida
enzymes

dmholmes,
There are many good digestive enzyme formulations with chymotrypsin in them that may help you.

My CDSA also showed overgrowth of 3 common bacterias (staph, hemolytic e coli and pseudomonas) as well as elevated candida (since taken care of with liquid Diflucan and Candex), and an infection with citrobacter freundi (taken care of with Cipro).

klutzo
 

dmholmes

Senior Member
Messages
350
Location
Houston
Thanks klutzo, I am going to follow up with my doctor on the chymotrypsin but it will be a couple of weeks. He did recommend a base of supplements before doing the test. Of them I've only taken the EPA fish oil. Not sure about taking the IgG SD immunoglobulins and amino acids. Don't know much about the first, and the amino acids have 30mg of B6 P-5-P which is already covered in the B-Right.

David
 

klutzo

Senior Member
Messages
564
Location
Florida
Euphoria now, pay later

Sunday,
I have a positively euphoric reaction to AB12, but later on, I pay with insomnia. Yesterday, I took only 1/4 tab of AB12 and 1/8 of MB12. I felt happy all day long. But, last night, I lingered in alpha level all night, random pictures running through my half-asleep mind, getting not one moment of real sleep, and I am still feeling wired enough to climb the walls. This has happened constantly since I've been trying this and is only relieved by stopping the supplements. Stopping is the only way I get any real sleep.

Everything I've read says if B12 makes you overly energetic like that, then you do not have a deficiency....it's very confusing. Even the B-Right makes me like that, and even my multivitamin did that if I took a full dose, since it has a lot of B vitamins in it.

Even more confusing, I just read an article by a doctor saying that even sublingual lozenges aren't absorbed well enough, and since all people over age 50 have some degree of B12 malabsorption, they should be taking enteric coated capsules, which can make it through stomach acid and are well-absorbed in the intestine.

I am keeping the doses tiny and taking them in the morning only, but it still causes insomnia. I am not taking any today, since I have to go have a lot of lab work done tomorrow morning and won't risk having a panic attack there. My anxiety level has skyrocketed since starting this, despite the reputation B vitamins have for alleviating anxiety.

I am not going to start by just licking a lozenge. I do not have that much time left on my life clock with my heart and pancreatic damage. It's going to have to move a bit faster than that, or I won't be around to see results.

My question to you is how well did you sleep after that wonderful day you had? Please keep us posted on your sleep as you continue to take it every day. I did not develop the total insomnia until the third day in....the first two days I just had reduced hours of sleep, from 8 down to 5 hrs. I am wondering if anyone else is having the severe insomnia that I am having.

klutzo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd, got results of a stool test which was taken about the time I started active b12s. Any relation to deficiency?

- 3 types of gut bacteria that are unhealthy, but common.
- Low gut immunity.
- Inflammation marker.
- Chymotrypsin marker low, <3. Normal above 9.

Thanks,
David


Hi David,

The inflammation can be a definite indicator of mb12 deficiency. It also reduces absorbtion of b12 resulting in a feedback cycle that gets worse and worse and leading to intolerance of many foods and frequent nausea.

The immunity impairment can also be the result of mb12 deficiency and lead to the bacteria getting established, again leading to a feedback cycle of even less b12 absorbed.

That's one reason sublingual b12s are so much more effective than oral or food absorbtion, a much larger assured absorbtion.

After 6 months to a year on the b12s it would be very interesting to see the differences of a retest. I know my digestive system healed tremendously.

Great to hear! My brain fog has been almost non-existent since starting adb12 and mb12, not sure which one or if both helped.

They both help in different ways. It's good to hear of your relief from brainfog as that steals so much of our life away from us. I got additional layers of brainfog clearing from Zinc, L-carnitine fumarate and SAM-e. Methylfolate plays a role as it appears to facilitate the b12 getting into the brain.
 

klutzo

Senior Member
Messages
564
Location
Florida
P5p

David,
I am not sure what your diagnosis or diagnoses may be, but if you also have Lyme like I do, there is a good chance you have Pyrroluria, in which case that dose of P5P is small, and may help you, in addition to the B-Right. Look it up, and see if your symptoms fit.

I don't know much about those immune complexes either. Maybe someone else will come along who does.

klutzo
 

Sunday

Senior Member
Messages
733
David, that's really great news about your lack of brainfog: I hope I can follow the same course, since I work with my brain the lack of it is doubly distressing.

Klutzo, while my evening after taking adb12 was euphoric, my body was already crashy, so this may not be a good sample for talking about. But how I got to sleep was how I've been getting to sleep since before this illness took (possibly as it was coming on): oil of marijuana. In my state, I can get a prescription. I tried Ambien, and it worked better than other sleeping pills I've done, but I was worried about liver damage from taking it in the long term, I felt groggy in the morning, and it's expensive. Marijuana oil I can make myself, it helps the depression I sometimes get from a day dealing with CFS, it's a great ally in kind of sorting through my day and getting perspective as I drift off - and I do drift off, I have very very few white nights with it. And no morning grog. It also helps (though it doesn't eliminate) nausea and nerve pain, an all-round gift I find.

As I say, this day wasn't perhaps representative since I'd overdone physically, so I'll keep you posted.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Sunday,
I have a positively euphoric reaction to AB12, but later on, I pay with insomnia. Yesterday, I took only 1/4 tab of AB12 and 1/8 of MB12. I felt happy all day long. But, last night, I lingered in alpha level all night, random pictures running through my half-asleep mind, getting not one moment of real sleep, and I am still feeling wired enough to climb the walls. This has happened constantly since I've been trying this and is only relieved by stopping the supplements. Stopping is the only way I get any real sleep.

Everything I've read says if B12 makes you overly energetic like that, then you do not have a deficiency....it's very confusing. Even the B-Right makes me like that, and even my multivitamin did that if I took a full dose, since it has a lot of B vitamins in it.

Even more confusing, I just read an article by a doctor saying that even sublingual lozenges aren't absorbed well enough, and since all people over age 50 have some degree of B12 malabsorption, they should be taking enteric coated capsules, which can make it through stomach acid and are well-absorbed in the intestine.

I am keeping the doses tiny and taking them in the morning only, but it still causes insomnia. I am not taking any today, since I have to go have a lot of lab work done tomorrow morning and won't risk having a panic attack there. My anxiety level has skyrocketed since starting this, despite the reputation B vitamins have for alleviating anxiety.

I am not going to start by just licking a lozenge. I do not have that much time left on my life clock with my heart and pancreatic damage. It's going to have to move a bit faster than that, or I won't be around to see results.

My question to you is how well did you sleep after that wonderful day you had? Please keep us posted on your sleep as you continue to take it every day. I did not develop the total insomnia until the third day in....the first two days I just had reduced hours of sleep, from 8 down to 5 hrs. I am wondering if anyone else is having the severe insomnia that I am having.

klutzo


Hi Klutzo,

Everything I've read says if B12 makes you overly energetic like that, then you do not have a deficiency....it's very confusing.

That is just plain wrong. If one has no deficiency it doesn't do anything. It isn't like amphetamine or caffeine. It is not a stimulant of any kind. I had a huge effect and I was extremely deficient. Shortly after saturated equilibrium was reached it all went away. L-carintine-fumarate restarted it for a while, TMG smoothed it out. After a while it was gone. I lost 50 pounds of water during that period after starting the carnitine and 30 pounds of water before that.

This overly energetic effect is like the swing of a temperature with a thermistat. It takes a while to settle down to "normal". It appears to actually be the overheated phase that makes the setting down regulate. TMG also helped me turn it down a bit. Enjoy it while it's happening. The euphoria goes away with it. It took a long time to decline so far. It takes a while to readjust to the mitochondria to all be working again. Remember, the effect is the mitochondria starting to work properly for the first time in probably decades. That is all that adb12 does.


Even more confusing, I just read an article by a doctor saying that even sublingual lozenges aren't absorbed well enough, and since all people over age 50 have some degree of B12 malabsorption, they should be taking enteric coated capsules, which can make it through stomach acid and are well-absorbed in the intestine.

I can understand the confusion. I am probably the only person, with an assist by Kevin, to have run sublingual versus injection absorbtion tests. However, I used only 5 star brands for that. I can't assure any absorbtion by other than the 5 star brands. Either they don't absorb as well or there is something wrong with their mb12. Intestinal absorbtion is limited to 1% and that has been documented over and over again by research. Stomach acid is an essential part of the absorbtion cycle. I would say that doctor is dangerously ignorant. You can demonstrate the absorbtion of the 5 star sublinguals yourself. Take 50mg and you will see it in your urine which means it got into the serum. It takes somewhere between 2.5mg and 6mg SC injection to make a just noticable difference in your urine. A somewhat smaller IM injection might show up. In any case your reaction indicates that it is being absorbed very well otherwise there would be no effect.


since all people over age 50 have some degree of B12 malabsorption,

Yes, a falloff of stomach acid at the very least impairs absorbtion in the intestine. Also, the complicated system of haptocorrin, acid and intrinsic factor can get messed up as we age, all combining to reduce intestinal absorbtion. The b12 doesn't actually get absorbed in the intestine until the pancreatic enzymes neutralize the acid making a basic environment. This also impairs the enterohepatic recirculation loop of b12 which raises serum level by reclaiming b12 excreted in the bile. A very small decrease in recycling efficiency causes a large fallof in serum level.

My sleep changed as you described but before b12 I was only sleeping 4-5 hours of very poor quality sleep. Over a realtively short time my ability to sleep longer increased and the quality of sleep improved to the best in 30 years. B12 deficiency causes multiple sleep disorders. The prolonged hypnogogic state of sleep with the images flying around is a stage of the sleep disorder. You appear to be going through it backwards as so many do. I would expect it to continue changing and improving as your body adjusts to functioning more normally and things heal.
 

klutzo

Senior Member
Messages
564
Location
Florida
marijuana oil

Sunday,
I saw a documentary about an elderly man who'd been treating people with marijuana oil up in Nova Scotia. Despite several people testifying in court that his oil had cured their supposedly incurable cancers, he was sent to prison. More proof that we are not the free people we think we are. I am glad it helps you sleep, but as a veteran of college in the late 60's, I have to ask, doesn't it make you ravenously hungry?

I take .25 mg. Xanax, .02 mg. Clonidine, and 1.5 gram of L-tryptophan to get to sleep and it usually works quite well. I repeat all three doses over again as well as taking my thyroid medication when I wake up around 3 am.

klutzo
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Sunday,
I saw a documentary about an elderly man who'd been treating people with marijuana oil up in Nova Scotia. Despite several people testifying in court that his oil had cured their supposedly incurable cancers, he was sent to prison. More proof that we are not the free people we think we are. I am glad it helps you sleep, but as a veteran of college in the late 60's, I have to ask, doesn't it make you ravenously hungry?

I take 25 mg. Xanax, .02 mg. Clonidine, and 1.5 gram of L-tryptophan to get to sleep and it usually works quite well. I repeat all three doses over again as well as taking my thyroid medication when I wake up around 3 am.

klutzo


Hi Klutzo,

Don't you mean 0.25mg Xanax?
 

klutzo

Senior Member
Messages
564
Location
Florida
Sleep

Freddd,
I understand everything you said, but I have found that the number one indicator of how well I can function on any given day is how well I've slept the night before, and I simply have things I must do. There is nobody else to do them. Women never get a day off. I have not done sh*t today and that means there will be twice as much that needs doing tomorrow. I feel totally apathetic with no sleep. If I could stop the world and get off for awhile, I could stick with the total insomnia until I get past it. Given that I can't do that, I will just have to stumble along making compromises with the protocol so I can function.

klutzo

P.S. YES! I meant .25 mg. Xanax! I'd be asleep permanently with what I wrote...thanks for catching that. I will edit it.