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MTHFR Mutations Questions

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thanks. Yeah, the Nutreval looks like a good test and eventually I’ll get it done, but it’s do darn expensive. I need to find a doctor That’ll do it with insurance...
Genova has a "Find a Doctor" page on their site. The Institute of Functional Medicine does too. In the US, when you use the prepay program, the test is around $189 which is an excellent value. (Always use the prepay program for the cheapest deal in tests like this.)
How do y’all find products that have such small amounts of these things? For example, Methyl B12 always comes in 1mg lozenges; do you cut that up in ultra tiny pieces or have I not found the right low dose product yet?
I wouldn't know. I need about 10mg MB12 a day. However, I also take balanced amounts of all the methylating nutrients (B6, B2, TMG, folate, magnesium, B1, molybdenum, methionine, glycine, NAC) so that it's being used. My doctor started me on lower amounts and then moved me up to my current levels.

If you are not tolerating tiny amounts, it's likely you have some sort of toxicity problem, like mold or heavy metals. A doctor could help you work out an appropriate protocol.

There is a B12 oil absorbed through skin you might look into in the short term, but you will need to take the other nutrients, too.
 

GreenMachineX

Senior Member
Messages
362
Couple updates:

I’ve been using Now Foods Adam Multivitamin the past 4 days and I’m pretty sure what I’ve been going through is Herx. The brain fog/dizziness/lightheadedness started the day I increased my methylfolate dose by 400mcg (mb12 was still 150mcg) and from then on, about 11am every day the fog begins. It’s getting better the past couple days with this multi, and the bloated gut is going away even though I’m eating less than stellar food. I’ve had an on and off mild headache the past few days as well. This is what’s in this multi:
9EE34A68-770C-4BAD-A0AD-ECC281F07923.png


I know it’s not the optimal forms of everything but even my angular cheilitis is healing. There’s another form of this same multi that uses solely methylcobalamin at 250mcg instead of mb12 and cyano b12 at 120mcg that I’ll be trying eventually. I’m adding in boswellia also to aid in histamine reduction and anti-Candida.

Debating on whether to add back in the bifido probiotics yet.
 

GreenMachineX

Senior Member
Messages
362
@Learner1 @caledonia @Sundancer @RWP (Rest without Peace)

I’m still experimenting with all of this and having trouble differentiating methyl trapping and potassium deficiency to possibly anything else. Also, Methyl trapping = Methyl block = folate trap = folate trap? All the same thing?

Is the only way to fix trapping by increasing b12? And does it have to be Methyl b12?

Could increased methylb12 cause increased histamine even with adequate methylfolate? Maybe just at first? In other words, are there detox symptoms I may need to ride out? Or, when it’s done perfectly right, one gets normal immediately?

I’m testing out 400mcg methylfolate and 250mcg methyl b12 right now (day 2) and I’m itching like crazy everywhere, even weird places like palms. It’s too early to see what’s going to happen with the angular cheilitis but I’m not hopeful. My hands have become ashy in the past day but my muscles are rocks anymore either. I have some methylb12 liquid I could add, but what will that do to my blood pressure? The best combination so far brings my blood pressure to 120’s over 80, and the worst combination has it 140’s over high 80’s with scary spikes in the afternoon.

Thanks in advance.
 

Sundancer

Senior Member
Messages
569
Location
Holland
Could increased methylb12 cause increased histamine even with adequate methylfolate

I'm not very experienced with all these things.

But I get histamine-reactions when I titrate up. So I go very slow and have found that taking bifido infantis during titrating up helps the histamine thing.

do not know if that will help you of course.

My dose is higher than yours though, seems my body can handle it better then you do. I go up with half a mg and on 3 mg now.

I've read that some people do better on adenosylcobalamine. I use that too and get no adverse reactions from it
 

GreenMachineX

Senior Member
Messages
362
@Sundancer
Well, I haven’t tried just going with a dose like yours all by itself yet (Or rather increasing that variable only), been a little afraid to. Maybe I should just add an extra 250mcg b12 to start with at lunch today (left it at home but could go grab it during my lunch hour) and see what happens? And have niacin and potassium at the ready?

Back to the potassium concerns I’ve mentioned earlier, what if I’m wrong about it? What if I increase b12, get side effects unrelated to potassium but assume it is potassium deficiency and take it? I’m sure in all this being discussed here someone has made that mistake and lived?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
It'd help if you had comprehensive nutrient testing done so you know what's going on. Knowing your genetics might help, too. There are a lot of moving parts here.

I'd guess you aren't taking enough MB12, but thsts just a guess. How much P5P or R5P are you taking? Magnesium? TMG? Glycine, NAC, and glutamine? B1 and molybdenum?

If you get methylation going tio fast, you can reverse it with niacinamide.
 

Sundancer

Senior Member
Messages
569
Location
Holland
this is not advice, just some thoughts and my experience

when you're itchy you've histamine problem. When I have histamineproblem I ride it out without changing anything ( well, I stop the new food I started) mostly its food that triggers it.

You seem to get histamineproblems from Methylcob, like me. EWhen I up the dose of metcob while itching it only get worse. I wait it out ( I am waiting it out at the moment) and take extra care with foodthings.

So I would not take more Metcob at all, but wait until stabilizes. I started metcob half a year ago, with half a mg, now last week titrated up to 3mg. again the itch thing. and the dizziness after taking it is back too, so I wait until my body is used to it.

Finding out the potassiumthing is easy and not scary. You take about 5 % of daily dose in a mug of water and wait for about half an hour. What happens to body? better? less cramps/palps/fatigue. Then it's spot on.

5 to 10 % is not dangerous to take and can teach you whether your problems are potassiumrelated.

I do not know how methyltrap feels, never had that. Hope someone else comes a long to tell us.

--
oh and Looking at your combi, I see several things that would make me ill. Don't say that's causing your problems, but I do not take combi's.
I cannot handle such a dose of selenium ( makes my heart race)
I once tried a toothpickpoint of molybdenum, made me ill for more then a week
Iodine does not sit well with me either

and Vit E in amounts higher then 100% daily advised gets me stressed out.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I cannot handle such a dose of selenium ( makes my heart race)
I once tried a toothpickpoint of molybdenum, made me ill for more then a week
Iodine does not sit well with me either
The body needs each of these nutrients to do its work. Depending on your genetics, environmental factors (infections, inflammation, mold or heavy metal toxicity), and your use of other cofactors (e.g., if you are short of something else used in a pathway, you may not be able to make use of another nutrient, causing a backup), your individual needs may vary. Comprehensive nutrient testing is useful in solving these problems.
 

caledonia

Senior Member
The original poster has given the explanational paradigm that upon solid and frequent administration of the said methylational-affecting and containing vitamin and mineral supplementation, heretofore, he or she has been experiencing the vastly unpleasant symptomology of itchiness without rash which he or she has given the actual interpretation of as having suffered from a constellation of unfortunate histamine issues.

As is often the case, myalgic encephalomyelitis also known as chronic fatigue syndrome patients are prone to suffer from the lack and disappointment of singular or even multiple synergistical resources to affect effective treatment applications and regimens from medically established and regulated professionals, henceforth, the visitation of certain patient centered and oriented forums on the internet information highway to derive and glean educational information related to the aforementioned myalgic encephalomyelitis and or chronic fatigue syndrome sufferer, in the hopes of obtaining satisfactory relief of the symptomology of the sufferance.

Therefore, it would seem that a positive and beneficial course of prudential and differential actionality, and notwithstanding the dialectical arguments for both mirroring sides, the addressing of the aforementioned unpleasantly suffered histamine issues after the discontuance and prior to the resumption of the aforementioned methylational containing vitamin and mineral supplementational substances; just to test the waters, so to speak.

Contained within the pages of the mightily researched book-formatted publication recently issued forth by the medically educated and degreed, one Benjamin Lynch, doctor of naturopathy from the Northwest Commission on Colleges and Universities(NWCCU) accredited Bastyr University of Alternative Medicine and the title of the aforementioned book-formatted publication being entitled “Dirty Genes”, upon which was spent by a medical research team of the highest degree of competence and education two years of scouring the published medical journal literature in service of the aforementioned Doctor Lynch to find and link dietary, environmental toxin avoidance and elimination, and vitamin and mineral supplementational therapy to the application of epigenetic manipulation of genetic pathways and enzymes in the service of bettering the public’s knowledge and health in this way.

The pathway and enzyme being thusly named d-amino acid oxidase, henceforth referred to as “DAO”, encodes the peroxisomal enzyme d-amino acid oxidase; hence the acronymical nomenclature; affects the presentation and possible eruption, in certain circumstances, of the aforementioned histamine symptomology. Therefore prudent application of the remedies and therapies set forth within the aforementioned publication could be eminently and discreetly helpful for the alleviation of said histamine-like symptomological sufferances.

Even myself, a poster who also suffers and is a longstanding patient of the disease of myalgic encephalomyelitis also known as chronic fatigue syndrome, has derived in due time and with very little effort from the transformation of dietary and supplementational habits benefitted from the aforementioned publication in terms of the PEMT gene and enzyme (PEMT which the acronym is an abbreviated representation of phosphatidylethanolamine methyltransferase); to wit, a gene that is important for the formation of the essential and omni-prevalent nutrient, phosphatidylcholine (abbreviated as PC), and which affects the operation of the bile, the vital and, indeed, necessary organs of the gallbladder and liver, not to mention the omni-present and vastly crucial cell membranes. Therefore, given my positive experience set forth above, the feeling and opinion is that the information contained within the aforementioned publication may also be of benefit to the original poster in regard to his or her histamine-like symptomology.

Wholly encompassing and enforcing disclaimer: As being solely a person who has unfortunately come to suffer with the disease called myalgic encephalomyelitis also known as chronic fatigue syndrome in certain countries, areas and jurisdictions of the known world, be it known to those whom it may concern, in whole or in part, that I do not possess any type, form, species or class of professional or degreed education, practice or licensure in the medical jurisdiction, and therefore the representations herewithin written do not represent any type, form, species, or class of medical advisement, in specific and complete compliance with the forum rules regarding medical advisement which are published elsewhere on this forum, to wit, Rule 5. The statements which have been set forth are merely opinion, suggestion or are dialectically educational in nature, and are not be misconstrued, in whole or in part, as the instructional telling of what must or should be done on the part of those seeking clarification of problematic symptomology as per Rule 5 and this also gives application to those who are merely participants or readers of the discussion, up to and not pretermitting moderational entities whether fully formed or in the process thereof.

To further encounter and regard information vis a vis, and related to the above and aforementioned, if any, opinions and suggestions, please visit the internet uniform resource location, also known as a hyperlink, set wholly forth, occurring within the signature section of this electronic transmission below, which, in turn, sets forth in a blog-type format handily provided by this forum and ostensibly for such a purpose, further informational and educational uniform resource locators and hyperlinks, documents, resources and even educational video regarding items discussed above.
 
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RWP (Rest without Peace)

Senior Member
Messages
209
@GreenMachineX

You're asking all the right questions, but I don't know how to answer them. I suggest following through on the suggestions put here by others. You still seem to be trying to figure this out while still on things, which makes it very complicated.

Sorry I couldn't be of more help.

RWP
 

GreenMachineX

Senior Member
Messages
362
@GreenMachineX

You're asking all the right questions, but I don't know how to answer them. I suggest following through on the suggestions put here by others. You still seem to be trying to figure this out while still on things, which makes it very complicated.

Sorry I couldn't be of more help.

RWP
@RWP (Rest without Peace)
Yeah, I’m more afraid of coming off everything again because of the nightmare that was. That was even scarier when I couldn’t breathe because my lungs locked down and felt like my throat was closing. I’m really starting to think my issue is low potassium (one of my issues I guess). I calculated my intake through my diet and realize I only get 2 grams probably a day. I’m going to increase through diet first to see if that makes a difference.
 
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GreenMachineX

Senior Member
Messages
362
@caledonia @Learner1

I also forgot to ask...Wednesday is my doctor appt with my TRT doctor who handles anything else I ask her to, and I’m pretty sure I’ll be going back on telmisartan for BP control. Since it is potassium sparing, how does that influence potassium intake and supplementation during methylation treatment? Would I still supplement just a bit less?
 

RWP (Rest without Peace)

Senior Member
Messages
209
@RWP (Rest without Peace)
Yeah, I’m more afraid of coming off everything again because of the nightmare that was. That was even scarier when I couldn’t breathe because my lungs locked down and felt like my throat was closing. I’m really starting to think my issue is low potassium (one of my issues I guess). I calculated my intake through my diet and realize I only get 2 grams probably a day. I’m going to increase through diet first to see if that makes a difference.

I hadn't read about that. Sorry for missing that detail. Yes, i agree about the potassium.

RWP
 

GreenMachineX

Senior Member
Messages
362
@caledonia @RWP (Rest without Peace) @Learner1

Wow! I just had a meal that was double what I typically get in potassium, and within 2 hours of it, my brain turned ON. It’s borderline too much actually. I definitely feel like I took a mild stimulant like caffeine or something. I have some niacin ready if it becomes too much but I’ll try to ride it out.

So, if I’m understanding what just happened correctly, not enough potassium keeps the methylation and healing from happening effectively, but upon raising potassium, it turns on? And without enough potassium, is any healing actually happening in that potassium deficient state?