B-12 - The Hidden Story

[Freddd]

@Freddd, would you mind giving me your opinion of what is going on with me as posted earlier -

was wondering if my blood tests tell me anything about what could be going on regarding me trying to get my Krebs Cycle going and also better methylation.

Serum Ferritin 40 range (5-204) (don't take any iron supps)
Serum Vitamin B12 1213 ng/l range(189-883 ng/l)
Serum Folate >20 range 4.80-19.00 ug/L

Since mid September this year I have been using on average 3000 mcg Transdermal B12 which I believe is cynacobalamin to very good effect energy-wise. It made a massive difference to my energy and ability to exercise very quickly. I now do between 5000 - 6000 steps everyday according to my Fitbit.

have run into trouble whenever I have added any extra methylb12 in the form of aggression, hyperactive and insomnia plus migraines. I am ok if I add any ADNB12 in a liquid form (Metabolics) but I don't notice much effect in the liquid form of HydroxyB12 if I haven't taken any TD spray.

I hadn't used any B12 for 3 days prior to my blood test.

There is 112 mcg MB12 and 112 AdnB12 in my multi which I take daily as well as 250 mcg calcium folinate and 250 mcg methylfolate.

I cannot tolerate any extra methylfolate because of the same symptoms mentioned above. The migraines I get make me feel suicidal if I take methylfolate, or MB12 they become permanent until days after stopping it.

A Metabolic Analysis Profile this year showed I had a high need for folate and also a medium need for B12.

Thanks for any help. Forgot to say I do eat vegetables each day and also a lot of peanuts which contain natural folate but I am going to try very hard to change to other nuts from today because I do think I might well be addicted to them as I also have a lot of snacks of just peanut butter which I now crave.

Dr Amy Yasko says that in some people extra folate can turn into glutamate which is a neuro toxin and I am sure I am one of those people.

Pam

[/quote]


Hi Pam,

MeCbl is considered by researchers to have neurological properties totally unmatched by any other kind of cobalamin. Also, Methylfolate is the form that penetrates the brain. I would take the irritations as evidence that they are making it into your brain and being effective in the damaged already brain. The moods appear to be the limbic system which repeatedly causes the symptoms mentioned. Activation of damaged nerves is PAINFUL, and how that gets expressed depends on which nerves it is. The severe headaches, which I used to have, appear to be usually severe pain in the muscles or inflamed veins on the head/neck or nerve pain in the nerves of the scalp etc and they stereo-locate into the head. To get your Krebs cycle going take AdoCbl and LCF as well as methylfolate and MeCbl. It is a 4 way deadlock..

I've been through it and healed. The theories you choose to use determine if you can heal. Most of the theories won't result in healing. There are dangerous side effects like some of the induced deficiencies or high BP from CoQ10 (causes headaches too) and quite a few unpleasant side effects that are flags of healing.

 

[howirecovered]

have run into trouble whenever I have added any extra methylb12 in the form of aggression, hyperactive and insomnia plus migraines.

I get migraines lasting around 70 hours from vitamin D and in my search for solutions came across magnesium threonate which is the only magnesium to cross the blood brain barrier. I've been taking it for a few days now and feel more relaxed and sleeping better. note that all the other magnesium types I've tried energize me instead of relaxing me, so there really is something to the MGT/blood brain barrier thing.

 

[ahmo]

@Freddd, I wasn't able to get back to this conversation yesterday.

Increasing MeCbl quantities isn't likely to change the amount of l-methylfolate needed. Adding AdoCbl might increase need somewhat because it opens up other layers of healing. Deplin is Metafolin which is a specific stable form of l-methylfolate You are aiming for the amount that will keep you out of paradoxical folate deficiency/insufficiency. It might be 4mg it might be 30mg. At this point I'm inclined to say that having to go as high as 30 probably indicates a lack of other things. I found that I reached that point fastest by increasing the dose by 50%-100% a day until the symptoms were fully controlled or at least visibly healing, which now goes to my earliest onset symptom, retaining water. After dropping the extra B1, B2 and B3 I appeared to have folate deficiency minimized but after a few months the skin around my fingernails is too ragged. It is appears to be the most mild symptom that takes months to show. So I have increased my dose to 8mg a day, from 4 to try for the next few months and see what heals. Things get slower as you pick off the quick incremental changes.

THIS is the sort of guidance I was looking for. Also, I tried 200mcg folate at bedtime, and it didn't affect my sleep, which is what I'd been concerned about. So I'm now taking it in split doses TID. I'll now push up my dosages per your suggestion. Thank You!

@leela

This would be a really great thing to study, as so many people have both chronic Lyme and ME,
and optimal treatment order is a perpetual guessing game.

...also, chronic lyme and autism.

@bertiedog

Dr Amy Yasko says that in some people extra folate can turn into glutamate which is a neuro toxin and I am sure I am one of those people.

GABA might help balance the excess glutamate. Also, pg 5-6 in this Yasko doc suggests Vit K might also help. (Brazil nuts have a good amount of selenium, which might be useful, tho maybe not an answer to any of your questions.)
http://www.scribd.com/doc/97861218/The-Role-of-Excitotoxins-in-Autistic-Type-Behavior

And, @howirecovered, again a big THANK YOU for creating that wonderful FAQ page!

 

[knackers323]

Hi Fredd

What does it mean when we get a huge positive response from carnitine? I've just added it and from the first dose I feel much better. Thank you

 

[Violeta]

I get migraines lasting around 70 hours from vitamin D and in my search for solutions came across magnesium threonate which is the only magnesium to cross the blood brain barrier. I've been taking it for a few days now and feel more relaxed and sleeping better. note that all the other magnesium types I've tried energize me instead of relaxing me, so there really is something to the MGT/blood brain barrier thing.

Do you take any Vitamin A? Some people who get sick from Vit D do well with Vit A. Also, if you have any of the "autoimmune" issues, Viamin A can be good for them.

Another thing about Vitamin D is that it increases calcium absorption. If one has a lot of acids in the bloodstream, the calcium is used to neutralize them, the blood gets thick, circulation is blocked, and the brain suffers terribly. It's not good to let that happen. I used to try to suffer through my headaches, but that's not good. You can try to thin out the blood some how and improve circulation.

 

[howirecovered]

Do you take any Vitamin A? Some people who get sick from Vit D do well with Vit A. Also, if you have any of the "autoimmune" issues, Viamin A can be good for them.

Another thing about Vitamin D is that it increases calcium absorption. If one has a lot of acids in the bloodstream, the calcium is used to neutralize them, the blood gets thick, circulation is blocked, and the brain suffers terribly. It's not good to let that happen. I used to try to suffer through my headaches, but that's not good. You can try to thin out the blood some how and improve circulation.

thanks Violeta, I do take 20,000 iu Vit A per day... also take a lot of fish oil which I think thins the blood.

 

[ahmo]

@Freddd: I think I've cracked the code! I think I've finally got a handle on this balancing act. Last night I increased MTHF, taking my daily total from 1.1mg to 1.4mg. I awoke about 4 hours later, needing K+ and Mg. I'd also done a coffee enema, and had earlier taken extra K+ to ramp down the caffeine. But now I needed more, and felt weird, eyes looked weird. I then got smart, and stuck an ET B12 into my gums before I returned to bed. Body tested strong YES! for this. So I've finally been able to correct the balance nearly immediately, instead of just counteracting w/ large doses of K+. Feel fine in the AM, no need for extra K+, but continuing w/ the additional B12.

My earlier, separate experiences of "overmethylating", once due to excess MTHF, the other excess B12, both created scalp outbreaks. And I'm now reasonably sure that this was the cause of losing my hair in handfuls. My understanding took a long time. Now, at last, I'm correcting the imbalance at the outset, instead of halting my progress. This is just the point you've been making about "detoxxing"--so-called. Certainly that's what I initially thought about my hair loss. It now occurs to me, or rather did last night when I was in an altered state, that this is also the same point at which/for which Dr. Ben Lynch suggests niacin, to overcome the effects of "overmethylation", or too much folate. But it's in fact B12 that's needed, not niacin to mop it up.

Now I'm really ready to move forward. I can see why I kept stalling here, my responses, both negative and positive, are very quick. And I appreciate your oft repeated reassurances that some of the negative symptoms are inevitable as healing starts. I feel like my methylation system is working for the first time in my life. I've further decreased my thyroid dose, a drop from 60mg T3 to 40 mg during the 9 months I've been on the protocol, and my gall bladder is now fully functioning. I posted elsewhere today that I've now used my little capsule filler to really simply divide Swanson Vit B complex into 1/2 doses....Feel like I'm cooking with gas now! cheers and Happy Hols, ahmo

 

[knackers323]

B12 Treatment Plan

FREDDD on B-12 Treatment

I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don't work at all, a few work very well and most are mediocre. Some products are unique. These are for trying to maximize the probability of healing.

Absolutely critical minimums for basic healing.

• Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
  
• Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
  
• Solgar Metafolin 800mcg
  
• Jarrow B-Right b-complex, 1 capsule twice a day
  
• Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.
  
• Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.

Essential, usually needs supplementing

• Zinc - 50 mg
• Calcium/magnesium supplement
• D - 3000-5000 IU total
• A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
• Vitamin E, NOW Foods Gamma E complex
• Vitamin C – 4000+mg/day

Possibly Critical Showstopper Cofactors - add after initial stages, any number of these in any combination may be required for maximum effectiveness or in some cases to work at all.

• SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood
  
• TMG - enhances SAM-e, methylb12, l-carnitine
  
• L-carnitine fumarate (acetyl might work better for some), works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood
  
• Alpha Lipoic Acid - enhances l-carnitine and adenosylb12
  
• D-Ribose - enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy

Additional possibly helpful cofactors

• Selenium
• Lecithin
• Chromium GTF
• many other supplements

THINGS TO AVOID

Glutathione and glutathione precursors such as NAC and glutamine, undenatured whey. The glutathione induces immediate active b12 deficiencies, apparently by converting active methylb12 to inactive glutathionylb12 and rapidly excreting it.

DEEP NEUROLOGICAL HEALING

The most frequent neurological problems are peripheral neuropathies, often characteristic in stacking-glove distribution. Sublingual methylb12 and adenosylb12 appear quite satisfactory in healing these in a sizable percentage of the time. There exists a class of more severe neurological damage. This is sometimes identified as subacute combined degeneration and takes place in the brain and spinal cord. This can occur in people severely deprived of active b12s by diet or lack of absorbtion by other reasons.

Another hypothetical cause may occur in people who for unknown reasons have a depressed Cerebral Spinal Fluid cobalamin level compared to their blood serum levels. In addition there may be mood and personality changes, hallucinations, sensory changes, psychosis and an abundance of neuropsychiatric changes. Some of these changes can be corrected with sublingual active b12s but some require much higher levels of active b12s than are usually achieved with sublingual tablets. In these situations usually only injections will help.

B12 INJECTIONS

The usual kinds of b12 injections, cyanocobalamin and hydroxycobalamin, are virtually always ineffective on any schedule. The once a month schedule for cyanob12 and the once each three months schedule for hydroxyb12 is useless as well. Daily sublingual active b12s are far superior to these in every way. These occasional injections were developed as a means to prevent people with pernicious anemia from dying. They do not promote neurological healing in any significant way.

In order to promote neurological healing methylb12 injections of larger than usual size and greater than usual frequency must be used. My own experience is given below and corresponds with the ZONES defined on another posting. All injections are subcutaneous as that produces a slower diffusion into the blood maintaining a steadier serum peak.

1. Single or multiple injections per day to 5mg methylb12, each injection. ZONE 2, fully equivalent to sublingual tablets, did not stop continued neurological deterioration and progressive numbing of feet of 15 years duration.
2. Single 7.5mg methylb12 injection per day stopped the progressive numbing of feet of 15 years duration.
3. Two 7.5mg methylb12 injections per day caused some small reversal of numbing of feet and of neuropsychiatric symptoms.
4. Four 7.5mg methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms.

Is the jarrow b right complex and others still the ones that are recommended?

Is there a multi that has most of the cofactors in at but does not have the unwanted forms of folate or B12s in it?

It is mentioned that all forms of potassium are the same. I have heard differently. Has the opinion on this changed?

Thanks

 

[Silva]

Hi,
I have been using Jarrow Formula´s Methylcobalamin for a few days now but today I read one of Fredd´s posts that says that Jarrow changed their formula and that the product is now less effective. I am considering changing to Enzymatic Therapy´s Methylcobalamin but the only one I could find on iHerb says "chewable tablets" on the bottle. Can these "chewable tablets" be taken sublingually or do they (Enzymatic Therapy) have a specific sublingual product? Also, I could only find a 1000mcg dose. Do they have a 5000mcg product?
Thanks
Silva

 

[pela]

Enzymatic Therapy B12 infusion 1000 mcg is the one. It works best when placed between cheek and gum and left there for 1-2 hours. No 5000 mcg available at this time.

 

[woleile]

Here is a presentation by James A. Neubrander MD on autism, methylb12 and adenosylb12 in which he distinguishes between b12 deficiency and b12 dependency. He also discusses the biochemistry of many of the same supplements that I use in the high dose active b12 protocol. He also talks about the "over methylator" idea and how it leads to wrong conclusions in avoidance of methylb12 in favor of hydroxybcobalamin. I think this is a must read paper.

Just posting a corrected link to the paper:

http://www.drneubrander.com/Files/Methyl-B12; Myth, Masterpiece, or Miracle.pdf

Laura

 

[woleile]

I had terrible neck pain and problems for decades. The methylb12 deficiency caused tight muscles twisting my neck into a reverse curvature characteristic of ME. I had horrid neck pain.

Fredd,

Are you referring to kyphosis? I had not heard this associated with ME, but my sister and I have ME and my daughter has kyphosis and neck pain.

Thanks
Laura

 

[Freddd]

Fredd,

Are you referring to kyphosis? I had not heard this associated with ME, but my sister and I have ME and my daughter has kyphosis and neck pain.

Thanks
Laura

Hi Laura,

No. It was strictly limited to my neck. It was a symptom that appeared about 8 years before the 18 pain points of FMS. It was exactly as described and the "reverse curvature of neck" was quoted from the description. It was what caught my attention and explained so much. I had all the symptoms but I hadn't had the tests specified for the Canadian definition and it isn't recognized in the USA. It was commented on by my orthopedic surgeon who was evaluating the damage to my neck from the '72 car crash. He said it was very unusual. This was circa 1982, long before they were even making fun of "yuppie flu" in 1987. I had 20 years of missed diagnoses. It wasn't until 2000 I got FMS/CFS diagnosed, then it was from everybody I saw.

 

[howirecovered]

Just posting a corrected link to the paper:

http://www.drneubrander.com/Files/Methyl-B12; Myth, Masterpiece, or Miracle.pdf

Laura

what is b12 dependency?

 

[woleile]

Dr Neubrander was talking about autistic children whose symptoms continue to improve with twice-weekly B12 injections for up to two years, although after the first few injections they can no longer be said to have a deficiency.

 

[ahmo]

@Freddd,

I found that I reached that point fastest by increasing the dose by 50%-100% a day until the symptoms were fully controlled or at least visibly healing

I've been proceeding with this, it's been a week now. (only a week??!) This progress is working for me, I'm up to 2.3 mg MFolate, 2.4 tomorrow. No problems at all. And, another mark of success: 2 years ago I discovered hypothalamus and adrenal glandulars. These were life-saving in my then-deteriorating condition. Now I've been able to decrease these to daily instead of AM/PM, with no negative results whatsoever. A Happy New Year to all. ahmo

 

[knackers323]

Out of interest has anyone tried raising their glutathione directly through i.v. Or liposomal approach?

What were the results?

 

[Freddd]

Dr Neubrander was talking about autistic children whose symptoms continue to improve with twice-weekly B12 injections for up to two years, although after the first few injections they can no longer be said to have a deficiency.

Hi Woleile,

That's because the DEFINITION itself is faulty. The damage done in 1 year of deficiency can take a lifetime to heal, and it takes lots more to heal than to prevent.

 

[lefti2003]

Hi,
I am new to this forum. I am b12 deficient in 12-2009 I had a b12/folate read of 382/15.6. Then in 4-2013 it was 487/19.5. My potassium in 6-2012 was 4.5 and in 08-2013 it was 4.6. I tried the methylb12 1000mcg (Jarrow sublingual). The first day 12-19-2013 I took only about 1/4 under my tongue. The second day I cut it into 4 pieces and took 8 pieces throughout the day so 2000 mcg. I was on vacation at this time. The third day I only took about 4 pieces totaling 1000 mcg. The last day 12-22-2013 I just took one piece 250 mcg. On the third day I did notice some muscle spasms and ate a few figs/ cashews. That seemed to stop them. Later when I was able to get to a vitamin store I did take a few 100mg doses of potassium. I stopped the treatment since I was out of town at the time and wanted to be closer to home. So on 12-25-13 I took a multivitamin Source naturals. They say to take 2-4 a day. The first day I took 1. The second day 12-26-13 I took two. I felt a little nausea. I stopped. The next day 12-27-13 I took a New chapter multivitamin which has much smaller doses then the source naturals. I also took a 1000 mg vitamin C. I had some nausea again it lasted an hour or so. Then 12-28-13 I had some nausea close to lunch time. Last night 12-29-13 I had a horrible case of nausea. I could not sleep. I am wondering if it is some bad food, a bug or something from the vitamins I have been taking. I know I did not drink that much water while taking them either. Oh somewhere in those last 3 days I also took 1 capsule of the Thorne b-12 which has 300mcg each of methylb12 and adlb12. The last couple of days I have also been having some muscle spasms. For the last month or so I have also been taking vitamin d-3(2000-3000IU/day) and fish oil.

I stopped everything to flush my system and am seeking a ND to do the right thing for me. Help me look into my blood work and go from there. Any advice on the nausea and muscle spasms?

Thanks,
Lefti

 

[girlfromeurope]

Does somebody know if it's okay to supplement with 500 mg potassium doses
Or should it be more spread out?