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B12 for probably non-ME/CFS symptoms

garyfritz

Senior Member
Messages
599
@garyfritz , it sounds like you really need to read the two stickies at the top of this forum:
Yes ma'am... :redface: I've skimmed through both of them a few times but I think it takes multiple passes to really grok what's going on.

P.S. Just remembered this...if you decide to ever try TMG, definitely do background on it thoroughly first. It's betaine, essentially a digestive supplement, and it could have implications for H.Pylori.
Thanks, I'll keep that in mind. I suspect it will take a while for me to work up to TMG.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
As far as the list of symptoms, Freddd has put that together a couple times, a couple different ways, expounding upon symptoms based on his observations and reports from others.

His way of writing can be hard for me to process, esp when I'm brain foggy, but it's worth re-reading these posts until they become clearer. (I'm of the more-words-is-better school of writing myself usually too, but probably not a good idea in this forum.)

I think this is the most recent, and it is from this thread http://forums.phoenixrising.me/index.php?threads/how-to-untrap-a-methyl-trap.28218/#post-430015

Many people have a response to MeCbl and Methylfolate of low potassium (increased BP and other things) and donut hole paradoxical folate deficiency where healing gets going in some triage layers and worsened deficiency symptoms in other triage layers. Common startup symptoms are listed below in categories.

Version 1.2 12/08/2013

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
 

garyfritz

Senior Member
Messages
599
Thanks, @sueami, I'll read through that.

It kinda illustrates some of the problems I have understanding this stuff, though. He has his own terminologies that I don't always "get." E.g. WTF is a "donut hole deficiency" or a "triage layer" ?? :lol:
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
I know. It's taken me a month or more of reading (either re-reading or seeing him restate things) to start to get the gist of what he's saying. He's using his own shorthand in someways. I did run across another post from him that was clearer to me and I'll see if I can find that and link it.
 

whodathunkit

Senior Member
Messages
1,160
What I finally did was I started saving the pertinent links and blurbs into documents on my computer. When I read some factoid(s) that was relevant to me or that I wanted to hold onto, I'd start a doc for the category it fit into, or add it to an existing doc (if it fit into a category I'd already started). I'd paste the factoid(s) and the link to the post they came from.

For example, I have a document for "Donut hole or paradoxical folate insufficiency" and I copied-n-pasted all pertinent things I found on the donut hole in that doc, along with the links to the posts that the blurbs came from. I also finally put the definition/concept into my own words at the beginning of the document. I find putting things into my own words helps me retain things.

Then I went back and re-read my docs. Still do. Still adding to them, too, although I haven't had as much time for researching and synthesizing stuff as I'd like lately.

Doing seemingly mind-numbing repetition is the only way I am able to hold onto concepts and internalize them. It's not actually mind-numbing at all...it's a remarkably effective retention strategy if you're trying to learn stuff.

Even more effective is actually copying the blurbs out longhand, then reading and re-reading your handwritten notes. But who in hell has time to do *that*? :p

One problem with this method is the docs get big and it becomes difficult to find exactly what you're looking for. But at least you've captured your factoid(s) somewhere for easier future reference than turning to Google for a site search.
 

garyfritz

Senior Member
Messages
599
Well, nuts. I boosted to 20mg methylB12 / day, and for two nights I slept like a log and had no RLS. Then last night I was up several times and it took several shots of Readisorb to settle things down. Still have some experimentation to do.

Meanwhile, my 23andMe report is in! Some interesting results:

MTHFR A1298C +/+
MTRR A66G +/+
MAO-A R297R +/+

COMT V158M +/-
COMT H62H +/-
VDR Bsm +/-
VDR Taq +/-
BHMT-08 +/-

So I'm homozygous for MTHFR, and homo MAO-A combined with COMT V158M is supposed to be extra bad. BHMT and COMT may contribute to ADD/ADHD symptoms. I do not have any mutations in genes associated with RLS, which surprises me. (Or maybe Genetic Genie just doesn't check those SNPs?)

Now what do I do??
 
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sueami

Senior Member
Messages
270
Location
Front Range Colorado
Glad you got your results!
I would suggest running your results through mthfrsupport.com, if you haven't already. I got a one page report from Genetic Genie and 19 pages from mthfr support -- an overwhelming amount of useful info. I think it runs $20, iirc, but well worth it.

I have your homo MAOa and hetero COMT v158M combo as well. Curious where you read about that particular combo.

I'll leave the analysis to others as I'm a complete neophyte here.
 

garyfritz

Senior Member
Messages
599
Sue, it's in my GG report under MAO-A: "When a (+/+) MAO-A mutation is combined with a (+/+) or (+/-) COMT V158M mutation, imbalances in neurotransmitters may be more severe. These imbalances can potentially lead to neuropsychiatric conditions and symptoms such as Obsessive Compulsive Disorder (OCD), mood swings, and aggressive and/or violent behavior."

I'll check out the mthfrsupport report. I already found Promethease.com, and got their $5 report. Talk about an overwhelming amount of info!!
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
Oh, I did see that in my GG report too. I kind of blew it off b/c I've made it 49 years without killing anyone, or for that matter, getting OCD about much. Mood swings I got. In spades. Thank god for mindfulness practices!
 

whodathunkit

Senior Member
Messages
1,160
This is really interesting. Now I wonder if I have those mutations. :eek: It's getting harder and harder not to have my genetics checked. Does anyone know if there's a snp for paranoia? :p
 

garyfritz

Senior Member
Messages
599
Yeah, I also don't show those symptoms (I think!).

Got the mthfrsupport report, and it lists a bunch more mutations:

+/+: ACE Del16, CBS A13637G, DAO, DHFR, FUT2 (3 variants), MAO A R297R, MTHFD1 C105T,
MTHFR A1298C, MTHFR (4 variants), MTRR A66G, NOS3, PEMT, SHMT2

+/-: AGT M235T/C4072T, BHMT-08, COMT, COMT H62H, COMT V185M, FOLR2, GAD1 (3 variants)
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@whodathunkit @sueami I have a brilliant little program for you. I'd been using a notebook program for several years, had some trouble w/ it recently, then they wanted me to pay $50 for upgrade. Or, lose all my notes. Went looking and found this FABULOUS little program, $5.00....oh, it's a Mac Program....Anyway, if you're not on Mac, maybe you can find another: http://growlybird.com/notes/index.html

@garyfritz MAO++ suggests a predisposition to histamine issues. What I've eventually learned is that histamines affect no only things like allergies, rashes, but blasting the brain w/ histamines can amplify any of the mental tendencies.

And COMT is known as the Warrior/Worrier gene. I was on the warrior all my life, until the stress of ME/CFS pushed me into the worrier side, compounded by my warrior over-reactivity. I've recently had a major adrenal clearing, which has shifted my whole life-long temperament. B12/folate had eliminated life-long insomnia, created calm. But this new aspect went far deeper than that. cheerful, resilient, a deep inner relaxation I searched for 30 years, thru all manner of therapies and meditation. Methylation support plus detoxification work!
 

whodathunkit

Senior Member
Messages
1,160
Jeez, it sounds like everyone both sides of my family is probably homozygous COMT. o_O My father used to joke all the time about "the worry gene" that my mother's side of the family manifests so prevalently. But after doing a little reading I think a highly expressed COMT mutation would explain a lot of weird stuff about us.

Thanks, @ahmo!
 

garyfritz

Senior Member
Messages
599
My mother has also always been an inveterate worrier. I used to have some of that tendency, but I weaned myself of it in my 30s.

@ahmo, your comment about histamine rings a bell. I've always wondered if I was over-histamined. My body finds lots of ways to itch: sensitivities to mosquitoes and other biting bugs, dry skin and eczema-like itch, even "cold allergy" (cold urticaria, hives-like rash when I get chilled), etc. Do you know if any course of action is recommended for MAO or COMT?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
highly expressed COMT mutation would explain a lot of weird stuff about us.
:whistle:

Do you know if any course of action is recommended for MAO or COMT?

MAO:Lot's for you to look at below. the supps I now use: rutin, royal jelly, mangosteen. I find rutin works almost immediately if I feel a histamine surge.

COMT: I haven't thought much consciously about this one for awhile. I was reminded by zzz0r about the warrior/worrier. I think this one is mainly about getting the whole of the methylation cycle into better shape.

My brief notes: frequently implicated in bipolar, panic attacks; at risk of too many methyl groups; Degrades dopamine, norepinephrine...So maybe this is one of the snps that responds well to low dose lithium. Low dose lithium was fantastic for me. Stopped me bursting into tears at any sad story. Stops the rapid recycling of neurotransmitters. Others here have noted it seems to help w/ B12 uptake, which COMT also needs help w/. Oh...MAO is also rapid recycling of neurotransmitters. So the 2 together, like me, very labile moods. that's in the past for me. I'm now calm, cool, collected, and cheerful:smug: True. I'm ever so grateful.

The one to ask re COMT is @zzz0r He's been focused on trying to understand how it relates to folate/B12 needs, I think, and has a deeper understanding about the snp. I think @caledonia is also up on this one.

http://roosclues.blogspot.com.au/2010/03/overview-of-high-histamine-also-called.html
http://peelingbacktheonionlayers.com/could-histamine-be-sabotaging-your-digestive-health/
http://aminerecipes.com/low-amine-grocery-list/
http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/
http://thelowhistaminechef.com/
Video talk, incl. supps for histamine http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-pt2/
http://thelowhistaminechef.com/wondering-why-you-react-to-everything-you-eat/
The Many Faces of Histamine Intolerance http://healthypixels.com/?p=1044
 
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garyfritz

Senior Member
Messages
599
Holy smokes, lots more good info. Thanks @ahmo.

I don't have the mood swings you had. If anything my moods could be described as "phlegmatic." My friends used to say I was so laid-back I was almost comatose. I always wished (and so did my ex) that I had a bit more passion and joy in my life, instead of being so low-energy and "meh" about most things. Maybe the COMT is degrading my dopamine so I never get the energy and "passion" boost? ADD and RLS are also associated with lower dopamine levels. But I'm just +/- for COMT V158M & H62H so I'm not sure how likely that is to cause troubles.

I once tried a non-prescription lithium orotate supplement and didn't feel a thing.

What does a histamine surge feel like? I'm not sure I get those, just various itchies.

Sooo, action plan:

Work on B12, methylfolate, etc and restarting methylation for the MTHFR +/+.
@ahmo's links show recommendations for histamine reactions triggered by MAO +/+.
I should probably boost my Vitamin D, given my two VDR +/-.
Any other recommendations?

Not sure what to do about these:

MTRR +/+ (or does that get addressed by methylation reboot?)
BHMT +/- can contribute to ADD behaviors.
2x COMT +/-.
I'll track down @caledonia & @zzz0r for COMT ideas.
Any other suggestions for those?
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Histamine can create many neurological symptoms as well as itches. If you look at roosclues link, you'll read about these. This was my first link to understanding histamines. It's the blog of a mum tracking what was triggering her autistic son's behaviors.

I think MTRR probably can be taken just as a need to work w/ B12/folate.
BHMT 08 according to Yasko, relates to impact of psychological stress on attention levels. Since you only have the one, it will probably be addressed by your general B12/folate program.

If you put your snps into your signature line, it's available every time someone sees your post. You can do this from the profile page, I think.:balloons:
 

garyfritz

Senior Member
Messages
599
Ok. Looking at those links, I don't see much of a match. Itches (including a bit of itchy eyes in the spring) are about the only histamine symptom that fits me. I eat a lot of the high-histamine foods without any apparent reaction.