B-12 - The Hidden Story

[*GG*]

Hi Ggingues,

Or you could Order a bottle of vitamin strength Metafolin and try it.

I don't have anything on this. It is all right here on the thread http://forums.phoenixrising.me/show...ucing-deficiency-called-quot-ddtox-quot/page4

Thanks for the link, somehow I have not subscribed to this thread!

GG

 

[nicola]

Been a while since I've been here, but I am trying the B vits again. Brief history - CFS due to mercury amalgams. Amalgams removed 5 years ago, slowly getting better. My two worst symptoms are POTS, now largely controlled with a beta blocker, and burning mouth syndrome, thought to feature most frequently in people with a hypersensitivity to mercury. I recently started taking B6 and 5mg of the Jarrow methyl B12 a day, and thought I noticed the burning mouth getting better. Upped my B12 dose to 10-15mg a day and, if anything, the burning mouth seems to be getting worse. Is this start-up? Should I push on or abandon? I am taking the folate a couple of times a week - I don't want to overrev methylation which is what I did last time, with a bad effect on my gallbladder and digestion (for some reason I don't understand).

any input gratefully received.

Nicola

 

[Freddd]

Been a while since I've been here, but I am trying the B vits again. Brief history - CFS due to mercury amalgams. Amalgams removed 5 years ago, slowly getting better. My two worst symptoms are POTS, now largely controlled with a beta blocker, and burning mouth syndrome, thought to feature most frequently in people with a hypersensitivity to mercury. I recently started taking B6 and 5mg of the Jarrow methyl B12 a day, and thought I noticed the burning mouth getting better. Upped my B12 dose to 10-15mg a day and, if anything, the burning mouth seems to be getting worse. Is this start-up? Should I push on or abandon? I am taking the folate a couple of times a week - I don't want to overrev methylation which is what I did last time, with a bad effect on my gallbladder and digestion (for some reason I don't understand).

any input gratefully received.

Nicola

Hi Nicola,

I had "beef-red burning tongue". I also has overall burning mouth. They both went away with the methylb12 but at different rates. The burning beef-red tongue went away faster and the burning mouth took some months. They also can be caused by methylfolate deficiency. Yopu need to read this new thread http://forums.phoenixrising.me/show...ucing-deficiency-called-quot-ddtox-quot/page4

 

[nicola]

burning mouth

Hi Freddd

thanks for this. My red tongue has also gone, but the burning mouth continues. Good to hear your experience. I shall continue....

Nicola

 

[undcvr]

Hi Ggingues,

I would try the Metafolin. It is totally more effective for many people. In some people folinic acid blocks Methylfolate and people have severe induced folate deficiency. I would be really sick in just a few days on that much folinic acid.

Is there anywhere I can find out more about how formyl folate might block methylfolate ? Are you talking about absorption or about it being used when in the folate cycle ?

I have taken Leucovorin at 15mg twice a day, it took me awhile to notice anything but the effects I have noticed are positive. I am beginning to realise that in terms of my reaction to drugs, I am VERY different from most other PWC here.

 

[Freddd]

Is there anywhere I can find out more about how formyl folate might block methylfolate ? Are you talking about absorption or about it being used when in the folate cycle ?

I have taken Leucovorin at 15mg twice a day, it took me awhile to notice anything but the effects I have noticed are positive. I am beginning to realise that in terms of my reaction to drugs, I am VERY different from most other PWC here.

Hi Undcvr,

Right at the moment, all of the possibilities are hypothetical but pragmatically based. I'll sum it up as best I can. There is much discussion going on at several of the threads of the methylation/detox menu that this thread comes off of. For starters folate, all forms of folate, is absorbed by an active system. Active systems tend to be limited. It appears to be a zero sum game for absorption; if it absorbs 90% of it's capacity as folic acid only 10% is left for methylfolate. Same with active transport once it is in the body. So practically speaking, the form dependent upon being converted, and again that is a limited system can block more or less of the active form dependent upon timing. Then there is the genetic aspect. Approximately 50% of the population can convert folic acid to methylfolate to a limit of about 800mcg/day, which may no be enough for some people especially while healing. Approximately 30% can convert folic acid to methylfolate to a lesser total amount daily. Then about 20% of population can't convert folic acid to methylfolate at all. So if inactive folic acid replaces methylfolate in the absorption and transport system and the body can't convert it or can't convert it adequately then deficiency symptoms might appear.

The "competition" effects depend upon timing and relative amounts of folic/folinic acid to all appearances. The genetic non converting portion of the population, while documented in research, is not known to be the case in this circumstance. The connection is strictly conjecture attempting to explain that which is pragmatically demonstrable but not proven in any specifics.


I have taken Leucovorin at 15mg twice a day, it took me awhile to notice anything but the effects I have noticed are positive.

If Metafolin works better it might be noticable within hours, almost certainly within 3 days of your last dose of folinic acid. Generally the difference either is not noticeable or it is very noticeable.

For me for instance, my first dose of Metafolin doubled the amount of mb12 I could inject without it being visible in my urine. The first night I started dreaming again after decades without dreaming. Each time I would go into what I now know was paradoxical folate deficiency IBS would kick up about the same time as my angular cheilitis (sores at corner of mouth) has open sores, about day 3-5. Then IBS would end about 3-5 days after the cheilitis starts healing and everything would be completely normal for days or weeks or even some months. Before mb12 and Metafolin my MCV was 99.8 for decades. After mb12 it was still 99.8. After starting Metafolin it dropped to 96 and stayed there what with going in and out of paradoxical folate deficiency. Then I took glutathione and the MCV went to about 102 for the first time in my life in the worst folate deficiency I had experienced. I have been in and out of folate deficiency over and over since the glutathione. Now without folic acid I hope to stay out of it for 3 months solic and see what my MCV does. I figured there had to be a missing factor all these years because of the start and stop nature of my healing and the sudden start of tissue breakdown and then healing. It appears to be having a wrong factor, folic or folinic acid and an inadequate amount of Metafolin or poorly timed.

I'm 3 days into no folic acid at all. My central nervous system is starting to show more signs of starting to heal again, IBS is gone and cheilitis is healing faster than usual. Very interesting.

 

[Adster]

Freddd, is it possible that a sc injection of .15ml of 25mg/ml b12 every second day is not as effective as 2mg or even 1mg of jarrows sublingual against the upper lip daily? I have a feeling I've slid back a little since going to the sc injections. Thanks for your help, the time you put in to help others here is amazing.

 

[Freddd]

Freddd, is it possible that a sc injection of .15ml of 25mg/ml b12 every second day is not as effective as 2mg or even 1mg of jarrows sublingual against the upper lip daily? I have a feeling I've slid back a little since going to the sc injections. Thanks for your help, the time you put in to help others here is amazing.

Hi Adster,

is it possible that a sc injection of .15ml of 25mg/ml b12 every second day is not as effective as 2mg or even 1mg of jarrows sublingual

Yes. For several possible reasons.

1. Mb12 exposed to room light (not deep red safelight) during preparation, drawing into syringe or injection.
2. Original mb12 crystals are not as effective as other batches of mb12 crystals, hypothetically because of minor differences based on the bacteria used to brew it. Different forms are known to be produced but assumed to be the same.
3. Because of short serum halflife the average serum level is higher with daily doses.

I tested 5 different batches of b12 side by side and 30 or so over time. I have been injecting for 6 years. Even with injection I use Jarrow AND Enzymatic Therapy daily for their qualitative differences. The variability between batches of injectable mb12 are as great as the differences between brands. I consider the two brands to be the most superior mb12 I have been able to find to date, and they differ slightly from each other so I use both every day as well as 30mg of injection needed to penetrate the CSF/CNS. I am doing a new series of trials now that I have removed folic acid from daily usage.

 

[Rockt]

Freddd, what is the name of the Enzymatic Therapy Mb12? Is it available at iHerb.com?

Thanks.

 

[Freddd]

Freddd, what is the name of the Enzymatic Therapy Mb12? Is it available at iHerb.com?

Thanks.

Hi Rockt, Here it is.

http://www.iherb.com/Enzymatic-Therapy-B12-Infusion-30-Chewable-Tablets/2119?at=0

 

[Rockt]

Thank you, sir.

 

[jjpap]

J Neurol Neurosurg Psychiatry. 2010 Dec;81(12):1369-71. Epub 2010 Jun 28.
Vitamin B12-responsive severe leukoencephalopathy and autonomic dysfunction in a patient with "normal" serum B12 levels.

Graber JJ, Sherman FT, Kaufmann H, Kolodny EH, Sathe S.

Department of Neuro-oncology, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Abstract

Leukoencephalopathy and autonomic dysfunction have been described in individuals with very low serum B(12) levels (<200 pg/ml), in addition to psychiatric changes, neuropathy, dementia and subacute combined degeneration. Elevated homocysteine and methylmalonic acid levels are considered more sensitive and specific for evaluating truly functional B(12) deficiency. A previously healthy 62-year-old woman developed depression and cognitive deficits with autonomic dysfunction that progressed over the course of 5 years. The patient had progressive, severe leukoencephalopathy on multiple MRI scans over 5 years. Serum B(12) levels ranged from 267 to 447 pg/ml. Homocysteine and methylmalonic acid levels were normal. Testing for antibody to intrinsic factor was positive, consistent with pernicious anaemia. After treatment with intramuscular B(12) injections (1000 ?g daily for 1 week, weekly for 6 weeks, then monthly), she made a remarkable clinical recovery but remained amnesic for major events of the last 5 years. Repeat MRI showed partial resolution of white matter changes. Serum B(12), homocysteine and methylmalonic acid levels are unreliable predictors of B(12)-responsive neurologic disorders, and should be thoroughly investigated and presumptively treated in patients with unexplained leukoencephalopathy because even long-standing deficits may be reversible.


Check this new article out. Fredd you are right... in time it will be proven your claim...

 

[h4house]

Be interested to hear what you think of this test for active B12 status, Freddd/Rich. It is being offered by a company in Scotland.

http://www.active-b12.com/home

Personally, I'm rather dubious about many of this type of test. They seem to vary wildly one day to next. I've started the regime and will see what happens.

 

[Adster]

HoloTC b12 testing is supposedly the most reliable test currently available. It's been available in Australia for a while now and is easily accessible. That said, my test results before starting the b12 treatment were within normal range(for Australia) yet I have responded well to supplementation.

 

[jeffrez]

Starting to question this B-12 theory as perhaps just idiosyncratic results in certain cases. Been taking 3mg methyl B for a few weeks now, had a 5mg methyl B IV yest - notice no real differences at all.

 

[Rockt]

Hi Mr. Kite.

I didn't get much bang either. But I've started to gradually "expand my envelope" in the last 10 days or so -doing a bit more and not paying for it so much. So I'm hopeful. I ran out of Jarrow 5mg Mb12 and really noticed the difference. Since I can't get it locally, I bought some AOR 5mg Mb12 and if I take twice as much I don't feel as good as with the Jarrow, but I feel better than if I don't take it. Does that make sense?

Also, I'm starting to notice a bit of improvement from the Metafolin and Ab12, whereas I didn't notice anything at first.

And, starting to tolerate the co-factors. Taking 4000mg vit.C, 2 tbsp. fish oil, 5-6000 IU's vit D and after taking it a day here and a day there, I'm starting to tolerate vit. E regularly. Still have to add B-complex, calmag, etc., but it seems to be comiing.

I'd say hang in for awhile. There haven't been any dramatic breakthroughs for me, but it's subtley coming along. I'm definitely going to keep at it.

 

[Mishe]

Positive reaction so far to Methylcobalimin

<3 Fredddddd!!! <3

I can't tell you how much I appreciate this info and so far (less than 2 weeks) am already showing a positive affect on the Jarrow b-12 5000mcg!!!!

I also received the Metafolin and B-right supplements this week. Still need to test the Metafolin before making any conclusions, but definitely seem to have a bad response to the B-right B-complex supplement. Increased fatigue, general body yuckiness, etc...very soon after taking which wasn't too surprising since thats the way I have responded to B-complex supplements for about 10 years. And multi-vitamins. And some other supplements.

Whats so neat to me is finally hearing someone confirm that that supplements like NAC, Undenatured Whey Protein and similar products that raise glutathione levels that are in so many formulas specifically recommended to improve the immune system and help those with ME/CFS are (well at least for some people) harmful! Not neat that it is harmful but just that my instinct was likely correct. Many times over the years I would endure some very miserable periods of time when I would set out to get "nutritional support" I believed that I had need of and also to get past the supposed "herx reaction" I would have taking those supplements and move onto better health. But that never happened. So for the most part I gave up taking supplements except for a few that don't seem to bother me.

Regarding B-12, In the first years I was ill I was near a city and I had more alternatives in health care than I do now in a small isolated town. I remember getting B-12 shots and immediately having beneficial reactions to them. I moved away and continue taking them, but from another pharmacy but for whatever reason they didn't work like they had before. I don't remember what the initial form of B-12 was, but I know the bunk stuff was cyanocobalamin and then hydroxocobalamin. I stopped using them.

Also have known without a doubt for many years that there is something in red meat (which I've assumed is B-12) that has a beneficial affect on me and if I don't regularly consume it my symptoms get worse. So no matter how many health fads or nutritionists or people who believe them say it isn't healthy I just can't agree with them in my case anyway.

 

[Mishe]

B-complex supplements not positive experience

Not sure what is in the B-complex vitamins that cause me such trouble, but usually folic acid is in there so maybe its that. Or is it common for people to react badly to certain B vitamins other than B-12? I'm concerned about taking so much b-12 and causing deficiency in the other vitamins though. Any ideas? Should I wait on the other B-12 Dibencozide do you think?

 

[jeffrez]

Thanks Rockt. I've actually been a little foggy since then, in what feels like a metaly kind of way. I'm wondering if the mb12 upregulated methylation too much and did in fact methylate some mercury.

How do you rebalance an overmethylation situation? Abstain from the methylator obviously, but is there any way to actively shut it down more?

 

[richvank]

Be interested to hear what you think of this test for active B12 status, Freddd/Rich. It is being offered by a company in Scotland.

http://www.active-b12.com/home

Personally, I'm rather dubious about many of this type of test. They seem to vary wildly one day to next. I've started the regime and will see what happens.

Hi, h4house.

The holotranscobalamin test is an improvement over the standard serum B12 test in that it measures only the B12 bound to transcobalamin in the blood, which is the fraction available to the cells of the body in general (not just the liver cells). As such, it is a more effective test for dietary B12 adequacy, proper absorption by the intrinsic factor mechanism in the stomach and gut, and transport by transcobalamin in the blood. However, there can still be a functional B12 deficiency because of genetic problems with enzymes in the cells that process the B12 when it enters them, or, in my hypothesis, from glutathione depletion in the cells. So the urine methylmalonic acid measurement is still better to test for that, as in a urine organic acids test such as the Genova Metabolic Analysis Profile. This panel also includes figlu, and the combination of elevated MMA and figlu are a good indication of a partial methylation cycle block due to a functional B12 deficiency. Better yet for testing for this partial block is the Health Diagnostics and Research Institute methylation pathways panel.

Best regards,

Rich