B-12 - The Hidden Story

Sunday

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bigdreams, congratulations. You might want to try taking it earlier in the day - although you might already be doing that and I'm reading your message wrong. Homeopathic coffea cruda can be surprisingly helpful for getting to sleep, might be worth a try.
 

dmholmes

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Hm, interesting David, I just started taking a magnesium with three forms of magnesium in it, and my OI seems (knock wood) to be settling down. However, I've been fiddling with my protocol a lot, adding and upping things, plus acupuncture, so too many variables really to say.
Hi Sunday, in my experience that kind of magnesium didn't do anything for me. In the book I mentioned she has a chapter on which forms to use for supplementation. In short, IV magnesium is most absorbable, followed by magnesium oil (magnesium chloride), then the oral amino acid chelated forms of magnesium glycinate, magnesium taurate, and magnesium orotate. Then magnesium citrate. She covers magnesium malate also. She specifically says to AVOID magnesium aspartate because it breaks down into the neurotransmitter aspartic acid, which is neurotoxic without being bound to other amino acids.

My take so far is that magnesium glycinate and magnesium malate work very well for me. Both of them I've tried contain magnesium from Albion Labs which was covered in the link to krispin.com I posted. You can search iHerb for albion to find all the manufactures that use their chelated minerals.

Magnesium chloride has been the most absorbable for me perhaps. I take 500mg a day of the chelated stuff, but one teaspoon of magnesium chloride (133mg) knocks me out. The chelated magnesium makes me more energetic instead.
 

dmholmes

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thanks David. I've been using 400mg/day of magnesium (mag glycinate chelate / mag aspartate). I may need to add a little more. Glad this is working for you...

joseph
Hi Joseph, I haven't tried it but the author of the book I mentioned says to avoid mag aspartate which can be neurotoxic when not bound to other amino acids.
 
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Thanks for the info on magnesium dmholmes.

I'm still trying to find a decent calcium/magnesium product and searching on albion labs I found this Bluebonnet product that seems good:
http://www.iherb.com/Bluebonnet-Nutrition-Chelated-Calcium-Magnesium-120-Caplets/13799?at=0

It's 120 capsules and 2/day gives:
Calcium (bisglycinate amino acid chelate) 500mg
Magnesium (buffered magnesium glycinate chelate) 200mg

I'd probably want to take 4/day which would mean it would only last a month though and it's about 16+shipping from iherb. I really need to find something more affordable, preferably available in the UK.
 
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Joseph, I just wanted to mention that potassium could potentially be very important. I can't remember where on this thread Freddd describes it, but sometimes reactions to the B12s lead to - could it be hyperkalemia? anyway, a potentially life-threatening thing. Potassium is cheap and usually doesn't create reactions; I'd highly recommend you take the supplements at least while you're going through the initial process.

I generally tell people that the first 3 pages of this thread will give you the basics of the protocol, then you can ask questions at the end. I read those first three pages over and over, since I had bad brain fog.

It's amazing what's out there about B12s, isn't it? According to Rich and Freddd, blood levels are a useless measurement for people with CFS/ME/Lyme's; it's the CSF measurement that counts. And apparently, that goes for a lot of other neuro diseases, too. I always find it kind of exciting when you hit overlap and commonalities. It seems hopeful for finding out how it works, or at least how to mitigate what it does to us.
Sunday, appreciate the potassium info. The local vitamin store has several different brands. I'll pick one and give it a try...small cost to avoid big problems

Thanks for pointing me to protocol pages. I'll use them as a reference as I navigate through the chaos. I've been learning as I read through other pages in the thread. One question pops into my mind: Is there a dedicated website for this methyl b12 protocol? I've developed neuro-psychiatric issues over the past few years. I've spent a lot of time scouring the internet for answers. I don't recall coming across this protocol until a few days ago. I don't know what would've happened if I didn't find this forum. The depression, anxiety, and cognitive issues were crippling me. I felt that I couldn't relax because of a constant inner agitation. This protocol needs to get out there front & center

Yes, it's amazing! I had no idea that b12 deficiency could affect so many things and be confined to the brain. I'm trying to learn all I can about it. I'm thankful I found this forum

joseph
 

dmholmes

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Thanks for the info on magnesium dmholmes.

I'm still trying to find a decent calcium/magnesium product and searching on albion labs I found this Bluebonnet product that seems good:
http://www.iherb.com/Bluebonnet-Nutrition-Chelated-Calcium-Magnesium-120-Caplets/13799?at=0

It's 120 capsules and 2/day gives:
Calcium (bisglycinate amino acid chelate) 500mg
Magnesium (buffered magnesium glycinate chelate) 200mg

I'd probably want to take 4/day which would mean it would only last a month though and it's about 16+shipping from iherb. I really need to find something more affordable, preferably available in the UK.
Doveman, you're welcome. In researching magnesium, calcium excess seems to cause a deficiency of magnesium. I'd be sure you need a cal:mag ratio that high. The Calcium Lie covers it quite a bit, although some of the ideas in the book could benefit from more references.
 
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3 week update

Cutting back the mb12 dose to 2-3mg has helped some with the strong emotional swings. I started splitting pills Friday. Smaller amounts spread out throughout the day seem to be helping. Here are some positives from the first 3 weeks: better sleep (starting to feeling rested for the first time in yrs), body temperature up, and some memory improvement. My emotions are still on a rollercoaster but they havent been going to the extremes over the past few days. Im reminding myself that startup issues are a good sign. I currently take 800 mcg of active folate in divided doses. I wonder if I can do this totally with sublingual mb12 or if Ill need to get shots at some point? I plan to stay with the sublinguals for now and see what happens. The neuropsychiatric issues are the biggest problem. Im hoping for healing

joseph
 

Freddd

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Found an article that mentions a B12 deficiency that is confined to the brain. Has anyone come across this before? I'd be interested to hear your thoughts --joseph

http://www.mts.net/~baumel/B12.html

"There is an intriguing reason why some people with normal blood levels of B12 may need megadoses of the vitamin. They may have a B12 deficiency that is confined to the brain.

While most doctors would never consider such a possibility, studies have documented local cerebral deficiencies of B12 (using cerebrospinal fluid levels as a measure) in people with Alzheimer's disease, postpartum depression, and toxic neuropsychiatric disorders, including toxic depression."

Hi Jmiller,

Low levels of b12 in the cerebral spinal fluid have also been documented in CFS and FMS as well as alzheimers and some others. This can often require larger doses of b12. I inject 10mg of mb12 3x per day otherwise my feet go numb and I loose contgrol of my legs and I would end up in a wheel chair.

The hypothesis is that some people have an inability to transport it into the CSF. ANother study using itrathecal injections of mb12 found that some peole clear the mb12 out of the CSF much more quickly. Some had cleared in in less than 3 months and others not in a year.
 

Freddd

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Cutting back the mb12 dose to 2-3mg has helped some with the strong emotional swings. I started splitting pills Friday. Smaller amounts spread out throughout the day seem to be helping. Here are some positives from the first 3 weeks: better sleep (starting to feeling rested for the first time in yrs), body temperature up, and some memory improvement. My emotions are still on a rollercoaster but they havent been going to the extremes over the past few days. Im reminding myself that startup issues are a good sign. I currently take 800 mcg of active folate in divided doses. I wonder if I can do this totally with sublingual mb12 or if Ill need to get shots at some point? I plan to stay with the sublinguals for now and see what happens. The neuropsychiatric issues are the biggest problem. Im hoping for healing

joseph
Hi Joseph,

Only mb12 injections will be more effective than sublingual mb12 and then not always due to many problems. Based on 7 years experience, I consider sublinguals to be more reliable than injections which are subject to easy breakdown and loss of effectiveness from light exposure at any point. If 15-20mg of sublinguals don't produce all the effectiveness you need and you try the 50mg single dose and find substantial beenfit, then injections of 7.5mg or larger of MB12 could help.
 

Freddd

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Thanks, Freddd. I crashed yesterday. Was able to have a wonderful day from 9-4 running errands and shopping.. felt somewhat near normal. Got home and knew I was toast. I didnt know adenyl is not used up.. was thinking maybe I need more and maybe I do for reserves.. ?? Took 4 1 mg jarrow M12s today and will take one more at least. I was taking 4 mg total per day. Also took half a AB12 (4.3 mg) and more methionine, which has helped me in the past.

Wondering now if daily activity, pushing the muscles.. which i did... I could feel them working and flexing like when i used to work out and took such things forgranted.. what a great feeling. At the same time, I could tell they were not recovering well.

I've been looking int o my genetics. I am MTR++ which means both genes in the pair are defective. This gene is supposedly responsible for "using" MB12 specifically. ++ indicates I am a MB12 guzzler and use too inefficiently, too fast. One MTRR gene is hetero +-. This one is involved in recycling B12.. so this can be slowed down due to this gene. So despite my COMT++, ++ status which honestly I am abit confused about though am warned not to take too many methyl groups because of, I may very well need a continual supply of MB12.

I dont understand how small amounts of MB12 can make up a deficiency or what exactly defines that. It seems to me if one is always needing to "reload" then one is at least dependent. If the body needs to function and one constantly needs to reload to do that, then are we talking repair stage or to function stage? If you stopped MB12 would you go downhill or stop progressing?

Regarding your RBCs.. are you sure your methylation cycle is balanced?

Thank you Lena and Sunday for your updates. It helps to hear.
Hi Soulfeast,

Methylb12 is "used up" and some people are more effcient than others at reactivating it before it is excreted. Some people appear to excrete it much more quickly. Some people dump it out of their cerebral spinal fluid more quickly and all of these for unknown reasons. Adb12 once parked in mitochondria tends to stay parked. However, to form new cells requires both mb12 for DNA replication and adb12 for mitochondria. I was totally unable to build more muscle until I made the adb12 available vias supplements, then I was able to restore muscle tissue rapidly.

When stopping mb12 most people notice an increase of symptoms starting after about 3 days. It appears to me that once neurologically damaged it always requires more mb12 to maintain functioning or damage returns. Without these larger doses of mb12 the damage had been considered "permanent" in the past. It appears that larger doses of mb12 restore functioning rapidly but that actual healing takes a lot longer. Some docs say 5 years to heal with some permanence.

Mb12 has very few methyl groups availalbe compared to SAM-e for instance, or TMG. The methyl group of an mb12 molecule is 1.3% by mass. So 1.3% of 1mg is very little compared to whatever the percentage is of 400mg of SAM-e or 1000mg of TriMethylGlycine. Methylfolate also is a more geneorous methyl donor than mb12 and these other sourcves supply the methyl groups for recycling cobalamin that has already donated it's methyl group.
 

Freddd

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Hi Soulfeast,

I would like to add one thing to my previous answer to you concerning "small amounts" of mb12. The body is thought to actually "exhaust" just some small number of micrograms daily, some say as few as 2 mcg and even with zero reabsorbtion probably less than 100mcg. Most of an mb12 dose is excreted via the kidneys within 24 hours. These facts about b12 lead some to believe that more can't be effective. I, and many others, have experienced the benefits of an excess over the amount exhausted daily. The effect is that the mb12 is instantly available for functioning anywhere in the body without waiting and that appears to happen only when there is enough to mb12 present to be able to diffuse to where it is needed, bypassing the standard distribution system. With the excess I have enough nerve function in my feet to be able to walk normally and not fall down, to sense the position of my feet and legs, to feel a stone in my shoe or a toenail digging into another toe or anything else. Without sufficient excess, my feet have increasing numbness within 3 days and it gets worse from there working up to my thighs and becoming incontinent. Eighteen months ago, before finding the effective dose, I was falling down, unable to sense where my feet were with large totally numb areas in my feet. Right now they hurt like hell, but believe me, that is far better than numb and I am not in a wheel chair. Right now, my feet are more functional than they have been since 1993. It takes 3 x 10mg injected daily to be this functional despite the damage. The actual healing goes slowly but appears to be progressing. I lost the last dead numb area a few months ago and it hasn't been back. On Cycbl or Hycbl I would be in a wheelchair in diapers, unable to read, unable to type (loss of fine muscle control in my hands), loosing my memory and cognitive abilities. That was close to where I was at 7 years ago, getting very close to that wheelchair. More likely I would have been dead by 5 years ago. I was headed rapidly that direction when I tried the mb12 for the first time. I have no desire to go that far down that path again.

Yes, it gives me expensive urine. However, it is what the mb12 does for me while still in my body that matters, not that it is rapidly excreted. I was told the same expensive urine story when I startted high dose vitamin C after 2 years of an incurable urinary infection. The "excess" vitamin C acidified my urine to the extent that the urinary infection subsided within days. In the short time I had it in my blood it also stopped cold my 6 streps a year and cut them down to less than 1 per year. It wasn't until I started mb12 that the streps stopped completely along with the pneumonias every few years, colds that went to my lungs for months, asthma and seasonal allergies, chemical sensitivities, etc. So "replacement" amount certainly doesn't indicate "effective amount".
 
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Fred's protocol- Hi can someone point me to the link with Fred's protocol? I'm brainfogged/ill can't find it. I fall into the chronic neuro lyme/MCS/ my type symptos (like optic neuritis, numbness, muscle strenghth, jerking/twitiching)- drugs and herbs have caused my illness/AI horrific reaction(which I'm still in now that started 6 months ago)- my naturopath is recommending methyl b12 shots-- I stopped everything in Feb when I became hypersensitive to everything/in downward neuro cycle ( I had a life in november/was declining but nothing like right now-now homebound/in agony and numbness continues to spread-a few things are better)Working with a classical homeopath and flower essence lyme practioner right now (and prayer/God).

in the past (when I was much better 2 years ago and was sleeping-sub ling b12 would give me anxiety/interfere with sleep)-has onyone had this?


Thoughts on B12 shots?

Fred- I think i read you had numbness--did you have other MS types symptoms? muscle weakness, shakiness- insomnia etc-can you point me to link with your story?
 

Freddd

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Fred's protocol- Hi can someone point me to the link with Fred's protocol? I'm brainfogged/ill can't find it. I fall into the chronic neuro lyme/MCS/ my type symptos (like optic neuritis, numbness, muscle strenghth, jerking/twitiching)- drugs and herbs have caused my illness/AI horrific reaction(which I'm still in now that started 6 months ago)- my naturopath is recommending methyl b12 shots-- I stopped everything in Feb when I became hypersensitive to everything/in downward neuro cycle ( I had a life in november/was declining but nothing like right now-now homebound/in agony and numbness continues to spread-a few things are better)Working with a classical homeopath and flower essence lyme practioner right now (and prayer/God).

in the past (when I was much better 2 years ago and was sleeping-sub ling b12 would give me anxiety/interfere with sleep)-has onyone had this?


Thoughts on B12 shots?

Fred- I think i read you had numbness--did you have other MS types symptoms? muscle weakness, shakiness- insomnia etc-can you point me to link with your story?

Hi Herbqueen,

The basics are covered in the first couple of pages of this very thread. Also, my personal story is on the personal story thread. Read the basics at http://forums.wrongdiagnosis.com/showthread.php?t=62327 . This has all the basic info concentrated in one place.

Fred- I think i read you had numbness--did you have other MS types symptoms? muscle weakness, shakiness- insomnia etc-can you point me to link with your story

These are all b12 deficiency symptoms which I did indeed have. On the list of symptoms and signs I had about 200 as listed on the most recent version of the list.

It is better to start with the sublingual 5 star brands as an injection can be totally overwhelming and only some small percentage actually need them. There is a way to tell if you can benefit from injections of mb12 once you titrate up to a large enough level of on the sublinguals that it won't flatten you. Even a 1000mcg sublingual putting 250mcg into serum if held under lip for 2 hours can floor a person. Also, the sublinguals are in general more reliable due to handling porblems such as exposure to light of the injectable. The startup responses can be intense as hundreds of things start happening all at once. Also, other vitamins and minerals can be rapidly depelted in the startup phase, potassium dangerously so. Read the basics and the cautions and then lets discuss it further.
 

bigdreams87

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Fred, I took zinc every day for about a week and it left me feeling like I could not stand in place. Any thoughts?

I am one of the ones who have used FIR sauna so who knows what is depleted.
 

Freddd

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Fred, I took zinc every day for about a week and it left me feeling like I could not stand in place. Any thoughts?

I am one of the ones who have used FIR sauna so who knows what is depleted.


left me feeling like I could not stand in place. Any thoughts?

What do you mean exactly? Too fidgety? Too dizzy? Or what?