• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

B-12 - The Hidden Story

rydra_wong

Guest
Messages
514
I know that back when we went to the Pfeiffer Institute, they recommended Iodine, which prevents the conversion of histidine to histamine so that its often beneficial for both thyroid and histamine issues. Just thought I'd mention that in case both might be an issue so you get two for the price of one. Since most Americans use Sea salt to avoid the aluminum heavily added to baking powder & table salts, they are often iodine deficient anyway and many naturopaths are recommending iodine for this reason.
Greenshots, I don't know what your background is but you seem fairly knowledgeable and have a fresh perspective so I wondered if you (and Fredd, but I think I brought this up on other threads for his consideration) could comment on the use of P5P, specifically to attempt to prevent electrolyte issues caused by active B's. I have so many genetic defects (18 out of 30) that it is hard for me to say what causes what. but it seems to me that I used to not have electrolyte problems as a result of active B's and now I do (just from the active B complex alone - NOTHING else!). I was wondering if the key could be that I stopped taking my extra 50mg P5P. I am going to try it, but what is and is not true for me may not be generally applicable. I read somewhere that autistic individuals have a higher need for P5P for instance. Has your doctor said anything to you about P5P worth passing on? Thanks.

Also, too soon to say, but after I took the P5P I seem to be peeing more. I was retaining water still from last week's blood pressure problem when I had trouble peeing. I had managed to get my bp down but not to get rid of the water. Do you know if P5P has anything to do with the urea (ornithine) cycle? Thanks again.
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi Adreno;
This may or may not apply to your situation,but I'll take that risk and bring it up anyway. High histamine is associated with low stomach acid. Low stomach acid is associated with many conditions including allergies and IBS. I have a history of treating myself with HCL, cortisol, enzymes, etc. for this, and it's difficult to get it right. Taking HCL was very effective for some years for me, but I burned some tissues with it, and I'm still healing them after a year of stopping. Cortisol replacement also increases stomach acid, but not quite enough for me. Now, I'm trying to carefully add just enough HCL to promote thorough digestion without burn. This is rather difficult to do, but it does help me with some of the symptoms that are similar to yours, with distinctions of course. I did notice that when I've increased the Mb12 and Folate, some of my low stomach acid symptoms have increased...not sure why...don't mind....great benefits.
 

adreno

PR activist
Messages
4,841
Hi Adreno;
This may or may not apply to your situation,but I'll take that risk and bring it up anyway. High histamine is associated with low stomach acid. Low stomach acid is associated with many conditions including allergies and IBS. I have a history of treating myself with HCL, cortisol, enzymes, etc. for this, and it's difficult to get it right. Taking HCL was very effective for some years for me, but I burned some tissues with it, and I'm still healing them after a year of stopping. Cortisol replacement also increases stomach acid, but not quite enough for me. Now, I'm trying to carefully add just enough HCL to promote thorough digestion without burn. This is rather difficult to do, but it does help me with some of the symptoms that are similar to yours, with distinctions of course. I did notice that when I've increased the Mb12 and Folate, some of my low stomach acid symptoms have increased...not sure why...don't mind....great benefits.noticed

Hmm. I've been wondering about this, so it's interesting you bring it up. Maybe that could be why I seem to get more IBS from potassium supplements (the alkaline kind). I've noticed that when I take the potassium, some foods come out undigested.

There is a whole paradigm about health and Ph balance, that I don't understand. Acid it supposed to be needed to digest foods, but at the same time I often seen recommendations to avoid acidic foods (like coffee, meats and grains) and eat more alkaline foods (like vegetables/fruits). I don't understand how you can "alkalize" your body and still have good digestion.

I've tried HCL, but it causes burning. Enzymes seems to go well with me. I'm thinking maybe ascorbic acid could be used instead of HCL. That and potassium chloride. What do you think?
Also, is there any way of testing whether one is high or low in stomach acid? I sometimes get acid reflux. Thanks.

EDIT: I have just been reading how low stomach acid actually contributes to high acidity in the tissues:

Compromised digestion, due to a lack of H.C.L. and enzymes, results in a fermentation of carbohydrates, putrefaction of proteins, and rancidity of fats and oils, all of which adds to internal acidity.
http://amy.wrytestuff.com/swa482190.htm
 
Messages
33
Location
INDIA
Dear Fred,

You write to take the dose of potassium as per effect. What effect would point to potassium deficency and also - is there any danger of taking too much potassium

Thanks,
Deepak
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi Adreno;
Yes, the whole acid/alkaline balancing bit numbs me. The PH throughout the body varys quite a bit, and the proper range for all organs is pretty narrow. Blood PH range is frighteningly narrow. I've also read that low stomach acid people can have acidic tissues as well. One reason is that if proteins are'nt properly cleaved and bonded, they can form other bonds that become noxious. For me, that means I'll end up with some noxious flatulence.
As for taking HCL, I agree that even 1 cap. of 650 mg. will cause burning in the kidney area for me. So it seems I need only a fraction of that amount. Many people respond very well to apple cider vinegar. One home test for digestive sufficiency is to try a tsp. or more added to a glass of water before a meal, and see if it improves digestion. Some people have used it for acid reflux. I've wondered if ascorbic acid would help digestion.... I also took digestive enzymes for years, and they did help very much. I would take them with food for digestion and inbetween meals for inflammation. They work very well, but as I took too much sometimes, I again caused some burn. But, as this applies to this thread, I am finding that the Mb12 and Folate are strenghthening my tissues and they are not so sensitve. They help with the use of amino acids that rebuild tissues.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
You write to take the dose of potassium as per effect. What effect would point to potassium deficency and also - is there any danger of taking too much potassium

Thanks,
Deepak

It is important to get potassium tested. You can have too much. Not reversable if too much damage is done. I have talked to my pharmacist and doctors.
 

adreno

PR activist
Messages
4,841
I also read you could test acidity by ph testing your saliva. Don't know if this is accurate.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Dear Fred,

You write to take the dose of potassium as per effect. What effect would point to potassium deficency and also - is there any danger of taking too much potassium

Thanks,
Deepak

Hi Deepak,

I would suggest you read this thread first and then let's dicuss it. http://forums.phoenixrising.me/showthread.php?15950-WARNING-LOW-POTASSIUM-IS-DANGEROUS

Actually achieving high potassium is very difficult and takes a really prolonged and abusive usuage of potassium in the absence of certain drugs or kidney damage.

As low potassium is a natural result of starting methlation it's even more difficult in the specific situation under discussion.
 

Crux

Senior Member
Messages
1,441
Location
USA
Yes, I've been using PH paper to test my saliva and urine, and it may apply if used in conjunction with symptoms, but I think it's rather vague.
 

Pea

Senior Member
Messages
124
I'm a bit confused by this Ph issue also. My friend who I'm helping through methylation has been testing his urine Ph. The nutritionist says if you have an alkaline body, you have an acid tummy & vice versa -you actually WANT an acid tummy because acid digests the food. His Ph testing had been right in the middle, but evening mental symptoms were like he was acidy (confused & anxiety), so she thought he was holding ammonia, and that the Ph reading was false.

We did this Vitamin C flush- http://forums.phoenixrising.me/showthread.php?16013-Ascorbate-Vitamin-C-Flush-Ammonia-Ph

And he totally cleared up mentally for almost 2 days. He kept burping while he was taking the ascorbate though - I'm trying to figure out what that means for his tummy. I suspect body is acid and his tummy is alkaline which is maybe why he's had gastritis?, and doesn't seem to absorb all of the nutrients. and he really didn't need Prilosec.

He also gets stuffed up/mucousy in the evenings. Inflammation?
 

adreno

PR activist
Messages
4,841
I'm a bit confused by this Ph issue also. My friend who I'm helping through methylation has been testing his urine Ph. The nutritionist says if you have an alkaline body, you have an acid tummy & vice versa -you actually WANT an acid tummy because acid digests the food. His Ph testing had been right in the middle, but evening mental symptoms were like he was acidy (confused & anxiety), so she thought he was holding ammonia, and that the Ph reading was false.

We did this Vitamin C flush- http://forums.phoenixrising.me/showthread.php?16013-Ascorbate-Vitamin-C-Flush-Ammonia-Ph

And he totally cleared up mentally for almost 2 days. He kept burping while he was taking the ascorbate though - I'm trying to figure out what that means for his tummy. I suspect body is acid and his tummy is alkaline which is maybe why he's had gastritis?, and doesn't seem to absorb all of the nutrients. and he really didn't need Prilosec.

He also gets stuffed up/mucousy in the evenings. Inflammation?

I believe buffered vitamin C is alkaline. So you might try pure ascorbic acid instead, to get a more "acid tummy".
 
Messages
33
Location
INDIA
Dear Fred,

I read the link on the potassium deficiency danger that you gave me. The last test I did my potassium level is 5 - I was having an electroyltes drink daily prior to the test, so I guess thats why the level is high - or earlier, before the drink it used to be around 4.2

Sometimes I suddenly start sensing my pulse in different areas of the body - like in thighs or back etc - do you know if this could be a sign of b12 deficiency ? Also I just noticed my thumb nail has got a small horizontal pit lately

Also, do you know if omega 3 can be had via flax seed oil rather than fish capsules ?

Just feel so exhausted .....:(

Love,
Deepak
 

greenshots

Senior Member
Messages
399
Location
California
Greenshots, I don't know what your background is but you seem fairly knowledgeable and have a fresh perspective so I wondered if you (and Fredd, but I think I brought this up on other threads for his consideration) could comment on the use of P5P, specifically to attempt to prevent electrolyte issues caused by active B's. I have so many genetic defects (18 out of 30) that it is hard for me to say what causes what. but it seems to me that I used to not have electrolyte problems as a result of active B's and now I do (just from the active B complex alone - NOTHING else!). I was wondering if the key could be that I stopped taking my extra 50mg P5P. I am going to try it, but what is and is not true for me may not be generally applicable. I read somewhere that autistic individuals have a higher need for P5P for instance. Has your doctor said anything to you about P5P worth passing on? Thanks.

Also, too soon to say, but after I took the P5P I seem to be peeing more. I was retaining water still from last week's blood pressure problem when I had trouble peeing. I had managed to get my bp down but not to get rid of the water. Do you know if P5P has anything to do with the urea (ornithine) cycle? Thanks again.

I was an ICU nurse for 16 years until my son was diagnosed with autism and I needed to quit my job to recover him. I was the RN who questioned EVERYTHING and pissed doctors off royally! It wasn't enough to do something, I had to know why and I never trusted anyone (esp doctors!) with my patients and I'm proud to say, that for this reason, it kept many of them alive. Then my daughter was next in line (I have one boy who was never sick & has a good profile) she had her MMR at 2 years and was gone, gone, gone, within a week. I have spent the past 7 years doing nothing else but studying this medicine, taking them to specialists from traditional and not so traditional, like Pfeiffer and Yasko and then found my doctor. She is so different from anything I've ever seen that it was like the enormous pressure was finally lifted because she understands the genes very well. So much so that she knows when Yasko (and others) are spot on but also knows when they are either wrong or things could be done differently. For instance, she was the only one ever who told us about taking Potassium wit the B12& active folate. She knows when I'm just detoxing (my horrible, deep chills that come with sweats) vs. Electrolyte or other issue. So I trust her and don't double & triple check her anymore (but did so in the beginning).

As for P5P, I wouldn't start it yet. Unless your BHMT/CBS/NOS is controlled, I don't care what anyone says, the P5P will only drive the CBS harder. Autistics need it but can"t handle it until this happens either. I have seen it with my own kids as well as time and time again with others. In this instance, I believe Yasko is right. She sure isn't right about everything though, there are other ways to get there.

Angela
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Dear Fred,

I read the link on the potassium deficiency danger that you gave me. The last test I did my potassium level is 5 - I was having an electroyltes drink daily prior to the test, so I guess thats why the level is high - or earlier, before the drink it used to be around 4.2

Sometimes I suddenly start sensing my pulse in different areas of the body - like in thighs or back etc - do you know if this could be a sign of b12 deficiency ?

Also, do you know if omega 3 can be had via flax seed oil rather than fish capsules ?

Just feel so exhausted .....:(

Love,
Deepak

Hi Deepak,

Use of plant based omega3 oils is probably just fine as far as I know. Fasiculations around the body do happen with low b12. I'm not sure wheter that you are feeling are those or not. A literal "pulse" I don't know about. The potassium levels would go up as long as you are taking some. So keeping it up there would do the trick while stareting the b12s. When you get the adb12 and l-carnitine fumarate going you could have a very large pickup in energy. You also need the mb12 and metafolin and other factors. Pay attention to your potassium . It's good to hear of sombody starting near the top of serum level instead of near the bottom. Good luck and good health to you.
 

greenshots

Senior Member
Messages
399
Location
California
I realize that some symptoms are unspecific, but it's the itchy nose that makes me think histamine. Just wondering if there was any specific reason for the active Bs/folate to increase histamine levels.

Histamine seems like a double-edged sword. Daytime fatigue and sleepiness, dysfunctional diurnal rhythms, both of which are common in CFS/ME could very well have low histamine levels in the brain. Modafinil works by increasing histamine levels (among other mechanisms), That's also why centrally active anti-histamines makes people sleepy.

On the other hand, histamine is involved in allergies and asthma. Histamine is released by mast cells, and there is a syndrome known as Mast Cell Activation Disorder, where increased activity of mast cells cause a lot of problems. Mast cells are a central part of the immune system. So I was wondering about the relation between mast cells and active Bs/folate.

Maybe mb12 raises histamine, along with other neurotransmitters, or maybe more mast cells are created on the protocol. I don't believe we can reduce everything to low potassium, and/or low/blocked folate.

Here's kind of another Pfeiffer Ins. issue but overmethylators & Undermethylators respond to the B vitamins and Folate very differently. For instance, an undermethylator won't often do as well with the B'12s & folate (active B 12's or folates) as an overmethylator will. This doesn't always apply as I am definitely an undermethylator & do okay on the B12's but they don't give me energy like they do for other people. We all cross over somewhat on symptoms of behaviors so I don't think its that black & white but if you tend to fall in one category, this may be one issue for you.

Undermethylators

High Histamine Levels Histadelic

Hypoimmune State
High Folate levels
Low Serotonin

Characteristics:
Perfectionism
Strong willed
Seasonal Allergies
Increased Libido
Slenderness
Internal anxiety
Addictions of all kinds: eating (with bulimia), gambling, shopping, sexual, drug, alcohol, smoking, etc.
Anorexia & Eating disorders

High rate of: OCD, ODD Oppositional defiant disorder
Schizoaffective Disorder
Trichotillomania

Avoid: B-12 (adenosyl or hydroxy B-12 often tolerated), Folate; folinic, & 5 MTHF

Common Lab Findings: Low serotonin & calcium
High Folate levels

Treatment: SAMe, Methionine, IP-6, Calcium, magnesium, Zinc, & P5P


Overmethylators


Low Histamine Levels Histapenic

*Probable Metallothionein (MT) issues with poor heavy metal excretion

Hyperimmune State
High Nor-epinephrine
Low Dopamine

Characteristics:
Depression
Aggression
Hyperactivity
Dry eyes
Low perspiration
Low motivation
Upper Body Pain
Anxiety & Panic Attacks
Artistic or musically inclined
Learning Disabilities/ADD
Food &/or chemical sensitivity

High rate of: Hallucinations
Paranoid schizophrenia

Avoid methylgroups:
SAMe, Methionine, Vit B-6, P5P, Folic acid, DMG, TMG, Melatonin, etc.

Intolerant to: SSRIs (Prozac, Lexapro, Paxil, Zoloft & SNRIs (Effexor, Pristiq, Wellbutrin), & IP-6 (inositol)

Taurine & GABA may not be tolerated

Common Lab Findings: Copper overload, Niacin, B 12 & Folic Acid deficiency.
*Can have High Homocysteine (depending on whether CBS or AHCY defect present)

Treatment: Aggressive Folic acidactive version (5 MTHF), B12, B3 (niacin), & BH4
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Here's kind of another Pfeiffer Ins. issue but overmethylators & Undermethylators respond to the B vitamins and Folate very differently. For instance, an undermethylator won't often do as well with the B'12s & folate (active B 12's or folates) as an overmethylator will. This doesn't always apply as I am definitely an undermethylator & do okay on the B12's but they don't give me energy like they do for other people. We all cross over somewhat on symptoms of behaviors so I don't think its that black & white but if you tend to fall in one category, this may be one issue for you.

Undermethylators

High Histamine Levels Histadelic

Hypoimmune State
High Folate levels
Low Serotonin

Characteristics:
Perfectionism
Strong willed
Seasonal Allergies
Increased Libido
Slenderness
Internal anxiety
Addictions of all kinds: eating (with bulimia), gambling, shopping, sexual, drug, alcohol, smoking, etc.
Anorexia & Eating disorders

High rate of: OCD, ODD Oppositional defiant disorder
Schizoaffective Disorder
Trichotillomania

Avoid: B-12 (adenosyl or hydroxy B-12 often tolerated), Folate; folinic, & 5 MTHF

Common Lab Findings: Low serotonin & calcium
High Folate levels

Treatment: SAMe, Methionine, IP-6, Calcium, magnesium, Zinc, & P5P


Overmethylators


Low Histamine Levels Histapenic

*Probable Metallothionein (MT) issues with poor heavy metal excretion

Hyperimmune State
High Nor-epinephrine
Low Dopamine

Characteristics:
Depression
Aggression
Hyperactivity
Dry eyes
Low perspiration
Low motivation
Upper Body Pain
Anxiety & Panic Attacks
Artistic or musically inclined
Learning Disabilities/ADD
Food &/or chemical sensitivity

High rate of: Hallucinations
Paranoid schizophrenia

Avoid methylgroups:
SAMe, Methionine, Vit B-6, P5P, Folic acid, DMG, TMG, Melatonin, etc.

Intolerant to: SSRIs (Prozac, Lexapro, Paxil, Zoloft & SNRIs (Effexor, Pristiq, Wellbutrin), & IP-6 (inositol)

Taurine & GABA may not be tolerated

Common Lab Findings: Copper overload, Niacin, B 12 & Folic Acid deficiency.
*Can have High Homocysteine (depending on whether CBS or AHCY defect present)

Treatment: Aggressive Folic acidactive version (5 MTHF), B12, B3 (niacin), & BH4

Hi Greenshots,

Last time such a list was put up by me from some place or another, I went through and marked the various items as low mb12, adb12, methylfolate. Going over this list it has more characteristics and fewer symptoms. However, interestingly some of the things I listed as low methylfolate I now would list as low methylfolate - paradoxical folate deficiency. Most of the symptoms on both parts of the list are as before low mb12 and/or adb12 and/or methylfolate. Some of the things are specific to paradoxical folate deficiency or induced folate deficiency via the methyltrap, such as low folate symptpkms with high serum folate. So the impaired immune system goes with low mb12 and low methylfolate and hyper responsve immune system to even lower mb12/methylfolate perhaps via methyltrap.

As 50% are "low methylators" and 20% are "high" methylators and 30% are "normal", we could say that "low" is "normal". I found that my "energy" was added to by mb12, adb12, SAM-e, l-carnitine fumarate, Alpha lipoic acid and zinc. It's a lot more complicated than low or high methylators, and on the active b12 protocol, response patterns vary greatly by cofactros for both. Since as I have said before, mb12 makes very little difference in itself if lacking any of the critical cofactors, which most people are, I don't actually find this list predictive of anything except possibly what cofactors might be needed.

As a lot of people get far more eneregy from adb12 which isn't a methylator at all and l-carnitine fumarate whose function is the transport of fats into the mito for making ATP by adb12. As most symptoms on both partds of the lsit are deficiency symptoms of mb12,adb12, methylfolate, l-carnitine fumarate, SAM-e, vit A and other things who knows if it means anythiong at all.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Dear Fred,

Could pitting in the nails be a b12 def thing ??

Deepak

Hi Deepak,

Pitting as in a "small pit", not a depressed longitudinal line? The depressed line occurs when methylation turns off for a number of days. My partner was traveling and had a physical crash in China and she had a deeply depressed groove across all her nails and some hair fell out. Pits don't ring any bells.
 
Messages
33
Location
INDIA
Hi fred,

its a small transverse ( horizontal), depressed line on my thumb nail - Not across the entire breadth but about half of the nail towards the center.

Thanks ,
Deepak
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi fred,

its a small transverse ( horizontal), depressed line on my thumb nail - Not across the entire breadth but about half of the nail towards the center.

Thanks ,
Deepak

HI Deepak,

I had the opposite, a new plateau level of new thickness acorss my entire nails. MY partner had a groove across her big toes. At times I have had a 2/3 width ripple in my nails so who knows. I can't say for sure. With the b12/folate drops suddenly a lot of cell reproduction stops. it happens when during a long enough or serious enough cause tio stop the cells. Cancer chemo can do it. Severe deficiency of either or both can too.