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is methylation just not needed for some?

Aerose91

Senior Member
Messages
1,400
I ask because, well, im on fairly high doses of everything now and i dont feel a damn thing. Im on 22.5 mg methylfolate, 15-20 mg mb12 and 1000 mg LCF per day and i just dont feel anything from it. Each nutrient gave me a little jitteryness when i first started but i was able to titrate up quickly. Im going to add TMG and see if that does anything but im already taking a lot of choline.

And no, no NAC or glutathione or anything. Just my methyl supps and cofactors.
 

whodathunkit

Senior Member
Messages
1,160
Aerose91: It's not clear what you're after. Are you looking for a buzz or for side effects? Are you looking for nootropic-type stimulation?

How sick are you? How is your energy generally?

If you're not extremely fatigued or have obvious nervous system problems, then it's entirely conceivable that these supplements aren't going to do anything for you.

These supplements have completely and totally changed my life. In two years I've gone from barely being able to work and walk my dogs to being able to work out 3-5 times per week (HIT, Pilates, etc.), plus my job, plus more dog walking. Plus some housework, although I'm still lagging on that. Because the energy is not limitless and because I don't want to throw myself into a crash, I still have to prioritize what I spend my precious energy on, and at this point housework still isn't at the top of my list. Sleep, family & dogs, work, and exercise are, in that order.

Point being, back when I first got here and I was still in bad shape the supplements produced noticeable effects. They were absolutely as powerful as some pharmaceuticals that I've taken, in terms of what I could feel them doing to my body. I got a lot of side-effects (although not as bad or as many as some), and it took about a year for them to subside.

But NOW that I'm healthier, I don't get sides or even the "kick" I used to get. I get stable, almost-normal energy from day to day. I don't feel anything more from a shot of mB12 and 1000mg of LCF than someone who's so healthy they don't need the supps. I keep taking them, though, because I know they are what made me healthy. I dearly wish I didn't have to, however, and wouldn't be taking them if I didn't need them.
 

Aerose91

Senior Member
Messages
1,400
I have rarely had energy issues with this disease, it started with encephalitis and the whole disease resides in my brain. Therefore, my symptoms are different than many so my goals differ, too.

I am very sensitive to energy expenditure still and have had some major disease progression from overdoing it in the beginning. Not having fatigue made it tough to monitor when id overdone it.

My symptoms range from bad dissociation to psychosis to dementia to all sorts of neurological problems, all of which are made worse by energy expenditure. None of these symptoms have been touched by my levels of methylation supp.s so far. Im wondering if im missing something.
 

Crux

Senior Member
Messages
1,441
Location
USA
Wow, that's a lot of methylation supps.

I would guess that, if you don't feel anything from those dosages, they're not necessary. ( could become harmful)

It could be the infections you have that are causing your horrible symptoms.

Pathogens can steal nutrients, and cause deficiencies, but I don't know if that's the issue.

We do know that Lyme Disease and other infections can cause these issues.
 

helen1

Senior Member
Messages
1,033
Location
Canada
What about the other active b12, adenosylb12? Some need that to start methylation improvements. I did.
 

Aerose91

Senior Member
Messages
1,400
@helen1 i do take adb12, probably 8,000 mg/week

@Crux yah i was a little concerned about too high a dosage. I do have bartonella encephalopathy so i can be considered a lyme-y. My doc and i agreed that i should get methylation going before taking abx so i can detox everything better but im not sure if its futile or not.

I should also note that a few times i had glutathione injections from my doc and i seemed to have no PEM for the rest of the day. I would walk through malls and be out doing stuff with no blowback days later so i know glutathione is an issue.
 
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Crux

Senior Member
Messages
1,441
Location
USA
I'm glad you have a good doc - we're complicated cases.

I haven't tried glutathione itself, some folks here report both positive and negative reactions.
You had a good experience - maybe there's some methylation block further on ?

You're providing all the nutrients for glutathione production, amino acids, minerals, B's.
Some folks here take NAC with positive results. There's a transdermal glutathione.

Now they're finding that gut microbes can make it. Do you have gut symptoms?
 

whodathunkit

Senior Member
Messages
1,160
To answer your original question: I suspect if you're methylating correctly these supps aren't going to help you.

I may be talking out my ass here, but I'm beginning to think methylation may help more in situations where there's a lot of long-term oxidative damage. It's involved with protein synthesis and a whole bunch of stuff I haven't had the mental wherewithal yet to put together.

But the point is that maybe the reason it really helps some and not others is because the cause of the symptoms we experience is different, even though the symptoms are the same.

I dunno. Just a thought. I wish you luck and health. :) As Crux said, you're a complicated case. We all are, I guess, but a big viral load just seems to make everything that much more tangled.

Have you tried NAC? It seems to do me good when I take NAC + glutamine + glycine to boost glutathione.
 

xena

Senior Member
Messages
241
Have you tried taking p5p? (Coenzymated b6)
And / or other bvitamins? Adding the active forms of several b vitamins seems to enhance fx for me

For me the b6 in particular seems to cause a massive uptick in internal glutathione production but only when I have enough b2

I did benefit from just methylfolate and mb12 in terms of sleep and brain fog but only with the p5p do I get a crank in gsh production. Panthetine (active b5) has completely normalized my sleep cycle.

I think the high doses of mthf and mb12 depletes other b vitamins; I started getting b2 deficiency symptoms several months in and feel better supplementing with low doses of source naturals coenzymated bcomplex which seems to have powerful fx at even 1/4 tablet sublingual per day. I take it only on and off BC it causes too much detox ATM (just started mold avoiding)

In summary it seems that the bvitamins are pretty interdependent in working
 

Aerose91

Senior Member
Messages
1,400
Have you tried taking p5p? (Coenzymated b6)
And / or other bvitamins? Adding the active forms of several b vitamins seems to enhance fx for me

For me the b6 in particular seems to cause a massive uptick in internal glutathione production but only when I have enough b2

I did benefit from just methylfolate and mb12 in terms of sleep and brain fog but only with the p5p do I get a crank in gsh production. Panthetine (active b5) has completely normalized my sleep cycle.

I think the high doses of mthf and mb12 depletes other b vitamins; I started getting b2 deficiency symptoms several months in and feel better supplementing with low doses of source naturals coenzymated bcomplex which seems to have powerful fx at even 1/4 tablet sublingual per day. I take it only on and off BC it causes too much detox ATM (just started mold avoiding)

In summary it seems that the bvitamins are pretty interdependent in working

I do, i take b minus by seeking health and extra b6 and b2 as well. I actually took those for a month or so before starting methylation so i had cofactors built up.


I used to take NAC but dont remember seeing any benefit from it after a year or so. I stopped it to start methylation supp.s.
 

xena

Senior Member
Messages
241
Well planned.
Interesting , NAC makes me super detox sick as does undenatured whey.

Presumably you took the NAC while in mold so if there was no effect, perhaps it wasn't being converted to glutathione if you didn't feel shitty
I guess if you're not converting NAC to gsh, that at least pinpoints a particular conversion problem. Maybe undenatured whey would do it of you. It contains glutamate-cysteine already bonded which leaves only glycine for the body to add

Does taking taking straight glutathione cause you detox?
 

Gingergrrl

Senior Member
Messages
16,171
I should also note that a few times i had glutathione injections from my doc and i seemed to have no PEM for the rest of the day. I would walk through malls and be out doing stuff with no blowback days later so i know glutathione is an issue.

@Aerose91 I was wondering if you could say more about this? I have been using both nebulized and transdermal glutathione from my mold doctor for approx 30 days and am finding them helpful. She does not endorse the IV or injection form and feels it is too big of a dose at once for the body to handle and then also leaves the body quicker. If I remember correctly, you also had mold exposure?

I have very different symptoms than you and do not have Bartonella but in my case, my mold doc felt it was better not to take the active methylation supps right now and not "open up this pathway" as when I tried even micro doses in the past, they were too stimulating for me and I got a severe over-methylation reaction. So in my case, I do better with nebulized glutathione than with the methylation supps, but I cannot tell you why.

I haven't tried glutathione itself, some folks here report both positive and negative reactions. You had a good experience - maybe there's some methylation block further on ?

@Crux, if someone had a good experience with glutathione, can you explain how that relates to a methylation block further on? I am compound heterozygous on the methylations genes. Am not sure what Aerose is?

There's a transdermal glutathione.

I use it and am not certain if it is helping in the same way that the nebulized form is helping but it definitely is not causing anything negative IMO.

Have you tried NAC? It seems to do me good when I take NAC + glutamine + glycine to boost glutathione.

@whodathunkit Am not sure if this is relevant for anyone here but my MCAS doctor advised me not to take NAC as it could be allergic in those with MCAS. In others, this is probably not relevant.

Presumably you took the NAC while in mold so if there was no effect, perhaps it wasn't being converted to glutathione if you didn't feel shitty

@xena, can you explain and I assume you mean if that if someone tries to detox mold while still in a moldy environment, that it will not work?

Does taking taking straight glutathione cause you detox?

For me, it does when I take it at the right dose. When I started it was a bit too strong so I had to reduce the dose and then build back up to original dose. Am soon going to increase it to 2x/day but have not done this yet.

Thanks in advance for any answers and @Aerose91 I am so sorry you are suffering so much and hope you not only get the feedback you need re: methylation but you find something to bring relief soon. Each one of us is so different and it is such a long and arduous process.
 

Aerose91

Senior Member
Messages
1,400
@xena
I actually was taking denatured whey when i was on NAC as well. I stopped those when i decided to go hard into methylation because many here, freddd included, said that those are methyl blocks but i havent found them to be a problem.

@Gingergrrl

I didnt feel any detox or anything, just better. It lasted for the rest of the day i'd say. This was all well before the mold exposure though so i cant give a good comparison. I also haven't tried other forms of gsh so i dont have a comparison.

My doctor and i agreed that i should get methylation going before taking the abx for bartonella. However, i don't know if this is doing anything. They only thing i have seen any benefit from was the glutathione reducing my PEM but id never be able to afford it anyway so its not an option to continue.
 

xena

Senior Member
Messages
241
@Gingergrrl
What I meant was that if the NAC/whey wasn't causing detox symptoms, that meant probably that it wasn't being converted to glutathione
I assumed producing glutathione in a moldy environment would produce nasty detox symptoms as it has for me.
Happy to hear that you are tolerating the glutathione. Were you taking a full vial at a time? I found it was too much for me. The oral form was even worse for me :( even plain charcoal makes me herx
I am hoping detox will be easier in my new place; so far idk

@Aerose91 hope you find something that works for you. I think it is only the undenatured whey that has the glutamylcysteine group if you get a chance to try it. Raw milk too. Or perhaps you could try boosting NRF2 ( curcumin, milk thistle, ashwagandha, green tea etc). And some folks are making lipo glutathione at home as well. @globalpilot or maybe the answer is in your SNPs. Best wishes.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl I didnt feel any detox or anything, just better. It lasted for the rest of the day i'd say. This was all well before the mold exposure though so i cant give a good comparison. I also haven't tried other forms of gsh so i dont have a comparison.

My doctor and i agreed that i should get methylation going before taking the abx for bartonella. However, i don't know if this is doing anything. They only thing i have seen any benefit from was the glutathione reducing my PEM but id never be able to afford it anyway so its not an option to continue.

@Aerose91 So you never felt a detox reaction that felt like a temporary fake flu/fever? I guess if you tried it before the mold exposure it might be different. The version I have was phenomenal and did the first 30 doses with no issue but when I did the first vial of the second batch (from same pharmacy) I had a bronchospasm reaction and something is different with this second batch but pharmacy closed until Mon b/c of holiday. So will have to wait to sort it all out but for me, the glutathione is worth the hassle. Am just using the transdermal cream now 2x/day and holding off on nebulizer until I figure out why this second batch is different.

How long do you have to take the methylation supps until you can take the antibiotics for the bartonella? Did you ever take mold binders? Sorry if you already posted this and I forgot!

@Gingergrrl What I meant was that if the NAC/whey wasn't causing detox symptoms, that meant probably that it wasn't being converted to glutathione I assumed producing glutathione in a moldy environment would produce nasty detox symptoms as it has for me.

Happy to hear that you are tolerating the glutathione. Were you taking a full vial at a time? I found it was too much for me. The oral form was even worse for me :( even plain charcoal makes me herx
I am hoping detox will be easier in my new place; so far idk

@xena thank you and that makes sense re: the NAC, etc, not converting to GSH if no detox symptoms. I did not begin the GSH until I was away from the mold. I was doing the full vial (of nebulized version) and it was initially okay, then too strong, so we lowered it and built back up to full dose. I then did the full dose for 1-2 wks with no issues until I started the second batch as I said above which has been so frustrating. I am allergic to charcoal so that is out for me. Are you in a new mold-free place now?
 

Aerose91

Senior Member
Messages
1,400
Nope, @Gingergrrl, no detox reacrions, just felt a little better for the rest of the day (physically, nothing helps my brain)

I didnt have a definitive time i was supposed to be on methylation supp.s before the abx, just long enough to get some detox going so i knew i could detox my abx, unfortunately i haven't felt anything.

@xena i may have to switch (back) over to the glutathione supp.s and abandon methylation, maybe that would privide more benefit
 

xena

Senior Member
Messages
241
@xena thank you and that makes sense re: the NAC, etc, not converting to GSH if no detox symptoms. I did not begin the GSH until I was away from the mold. I was doing the full vial (of nebulized version) and it was initially okay, then too strong, so we lowered it and built back up to full dose. I then did the full dose for 1-2 wks with no issues until I started the second batch as I said above which has been so frustrating. I am allergic to charcoal so that is out for me. Are you in a new mold-free place now?

I have been for almost 2 weeks now but I've contaminated it 3 times. I starting pushing internal glutathione production via methylation but got an unpleasant detox from that. How long did it take you to be able to tolerate glutathione once you moved?

Are you herxing from glutathione? And are you using another binder?
 

SOC

Senior Member
Messages
7,849
Not everyone, not even all PWME, have methylation problems. Treating a problem you don't have is pointless at best and expensive and potentially harmful at worst. It's not a one size fits all treatment.

@Aerose91, do you have any genetic testing that indicates methylation abnormalities? If not, you may be barking up the wrong tree and might benefit from spending your money elsewhere.
 

Gingergrrl

Senior Member
Messages
16,171
I have been for almost 2 weeks now but I've contaminated it 3 times. I starting pushing internal glutathione production via methylation but got an unpleasant detox from that. How long did it take you to be able to tolerate glutathione once you moved?

Are you herxing from glutathione? And are you using another binder?

@xena I don't want to side track Aerose's thread too much so will try to answer this via PM. If I forget, please remind me!
 

Aerose91

Senior Member
Messages
1,400
Not everyone, not even all PWME, have methylation problems. Treating a problem you don't have is pointless at best and expensive and potentially harmful at worst. It's not a one size fits all treatment.

@Aerose91, do you have any genetic testing that indicates methylation abnormalities? If not, you may be barking up the wrong tree and might benefit from spending your money elsewhere.

No, i didnt go into it blindly, everything im taking is based off of my snp's. I have the typical ME ones-
+/+ MTHFR 677,
+/- every COMT and MTR, MTRR.
+/+ MAO A,
+/- CBS
etc...

This was also all discussed with my doc before starting. I just can't figure out whats going on :confused: