• 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.

Uh-0h....a backslide

Messages
48
Hi everyone;

I recently started methylfolate and AdB12. (I had tried TMG and MethylB12 as well at one point but they caused anxiety)

Anyway, I felt really great after starting those two - my anxiety was 99% gone and the depression was too. My energy was really improved.

But I can feel myself starting to backslide - yesterday I was tired and had anxiety almost all day. Today I can feel some depression sneaking in.

What am I doing wrong?!?! I was sooooo hopeful that i had found a treatment that actually worked :(
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Hi everyone;

I recently started methylfolate and AdB12. (I had tried TMG and MethylB12 as well at one point but they caused anxiety)

Anyway, I felt really great after starting those two - my anxiety was 99% gone and the depression was too. My energy was really improved.

But I can feel myself starting to backslide - yesterday I was tired and had anxiety almost all day. Today I can feel some depression sneaking in.

What am I doing wrong?!?! I was sooooo hopeful that i had found a treatment that actually worked :(
Jammies,

It would be a lot easier to guess at the answer to that question if we knew your SNPs and what other supplements you're taking. For example, if you're MTHFR A1298C +/+ or +/- and MTR +/+ or +/-, you may need more methylfolate. But that's just one scenario. More info and I'm willing to take a guess.

And don't discount the possibility that you felt better and just did a little more than you're used to. (Like none of us have ever done that before!) You may need higher levels of supplements to support increased activity. Somehow, that scenario is also leading to more methylfolate again.

Well, before I just tell you to consider increasing your methylfolate, I should wait for a response. :)
 
Messages
48
Jammies,

It would be a lot easier to guess at the answer to that question if we knew your SNPs and what other supplements you're taking. For example, if you're MTHFR A1298C +/+ or +/- and MTR +/+ or +/-, you may need more methylfolate. But that's just one scenario. More info and I'm willing to take a guess.

And don't discount the possibility that you felt better and just did a little more than you're used to. (Like none of us have ever done that before!) You may need higher levels of supplements to support increased activity. Somehow, that scenario is also leading to more methylfolate again.

Well, before I just tell you to consider increasing your methylfolate, I should wait for a response. :)


Thanks so much for your response. It was silly of me not to include my snps. I just am not sure which ones are most relevant so I have to post all my 23andme Results. Sorry!!

As for the other questions - yes, I did probably overdo it a bit (or a lot :)) I guess I never thought that could make anxiety and depression worse though. But maybe it does?

My other supplements include: zinc, vitC, lithium orotate, evening primrose oil, vitamin D3, probiotics, topical magnesium, and 5-htp (for sleep). I do have subobtimal absorption in my gut and my last serum B12 was around 300 after about one month of eating liver instead of B vitamins.

OMT V158M GG -/-
COMT H62H CC -/-
COMT P199P GG -/-
VDR Bsm CT +/-
VDR Taq AG +/-
MAO A R297R TT +/+
ACAT1-02 AG +/-
MTHFR C677T GG -/-
MTHFR 03 P39P GG -/-
MTHFR A1298C GT +/-
MTR A2756G AA -/-
MTRR A66G AG +/-
MTRR H595Y CC -/-
MTRR K350A AA -/-
MTRR R415T CC -/-
MTRR A664A GG -/-
BHMT-02 CT +/-
BHMT-04 AC +/-
BHMT-08 CT +/-
AHCY-01 TT -/-
AHCY-02 AA -/-
AHCY-19 TT -/-
CBS C699T GG -/-
CBS A360A AA +/+
CBS N212N GG -/-
SHMT1 C1420T GG
-/-


Thanks so much for your help!!!!
 

caledonia

Senior Member
AdB12 is not involved in methylation. So you would basically be dosing with just methylfolate. It would combine with any B12 you got from food or was stored in your body. If you don't have much B12 stored, doing folate without B12 may possibly cause depletion of B12, at least that's what it seems like in my case based on symptoms. So that could explain getting good results, and then not. The methylfolate used whatever B12 you had to make methyl groups, then you ran out, so you stopped methylation and the problems returned.

400-600mg is actually pretty much, unless you're one of those people who requires a whole bunch. Rich Van Konynenburg had suggested 200mcg methylfolate, along with 200mcg folinic acid. Those are the final doses, not starting doses. Always Start Low and Go Slow to minimize adverse effects.

=-==-=-=-=
  1. COMT V158M GG -/-
    COMT H62H CC -/-
    COMT P199P GG -/-
    VDR Bsm CT +/-
    VDR Taq AG +/-
    MAO A R297R TT +/+
    ACAT1-02 AG +/-
    MTHFR A1298C GT +/-
    MTRR A66G AG +/-
    BHMT-02 CT +/-
    BHMT-04 AC +/-
    BHMT-08 CT +/-
    CBS A360A AA +/+
You have one First Priority mutation which is CBS A360A. This is the minor one, which people don't usually have a problem with, but you have two mutations, and you also have all the BHMTs, which can add to the problem. And you reported methyl B12 and TMG caused anxiety. This could be CBS causing this, so it would be good to do some testing to see if that's expressed. Then, if so, treat for that so you can tolerate methyl supplements. Look at Heartfixer or Yasko for more info on testing and treatment.

You have MTHFR A1298C, so some methylfolate for that.

You only have one B12 mutation, which is MTRR (B12 recycling), yet your B12 is low. You said you have gut absorption problems. My suggestion would be to start with the gut first. Do some stool testing and see why you have problems. Then use a 4R gut rebuilding program to address them.

For your COMT/VDR combo, Yasko would suggest hydroxycobalamin, adenosylcobalamin and also methylcobalamin, but less of that.

You have all the BHMTs, which is the secondary pathway, so some TMG and phosphatidyl serine for that.

MAO A +/+ would be consistent with mental health issues. Yasko suggests treating this SNP after the other ones have been addressed.

Check out the links in my signature for more info.

ps. if you're on any SSRIs or other psych meds, you'll likely need to taper off them very slowly. Your doc won't know about this and will likely give you too fast of a taper schedule. If you're having problems, reducing by 10% of the previous dose every 3-6 weeks has worked for many people. See the Paxil Progress forum for more info.
 

Violeta

Senior Member
Messages
2,895
I would guess that your liver is getting to the point of congestion from the supplements. Choline/inositol might help clear it out.
 
Messages
48
AdB12 is not involved in methylation. So you would basically be dosing with just methylfolate. It would combine with any B12 you got from food or was stored in your body. If you don't have much B12 stored, doing folate without B12 may possibly cause depletion of B12, at least that's what it seems like in my case based on symptoms. So that could explain getting good results, and then not. The methylfolate used whatever B12 you had to make methyl groups, then you ran out, so you stopped methylation and the problems returned.

400-600mg is actually pretty much, unless you're one of those people who requires a whole bunch. Rich Van Konynenburg had suggested 200mcg methylfolate, along with 200mcg folinic acid. Those are the final doses, not starting doses. Always Start Low and Go Slow to minimize adverse effects.

=-==-=-=-=
You have one First Priority mutation which is CBS A360A. This is the minor one, which people don't usually have a problem with, but you have two mutations, and you also have all the BHMTs, which can add to the problem. And you reported methyl B12 and TMG caused anxiety. This could be CBS causing this, so it would be good to do some testing to see if that's expressed. Then, if so, treat for that so you can tolerate methyl supplements. Look at Heartfixer or Yasko for more info on testing and treatment.

You have MTHFR A1298C, so some methylfolate for that.

You only have one B12 mutation, which is MTRR (B12 recycling), yet your B12 is low. You said you have gut absorption problems. My suggestion would be to start with the gut first. Do some stool testing and see why you have problems. Then use a 4R gut rebuilding program to address them.

For your COMT/VDR combo, Yasko would suggest hydroxycobalamin, adenosylcobalamin and also methylcobalamin, but less of that.

You have all the BHMTs, which is the secondary pathway, so some TMG and phosphatidyl serine for that.

MAO A +/+ would be consistent with mental health issues. Yasko suggests treating this SNP after the other ones have been addressed.

Check out the links in my signature for more info.

ps. if you're on any SSRIs or other psych meds, you'll likely need to taper off them very slowly. Your doc won't know about this and will likely give you too fast of a taper schedule. If you're having problems, reducing by 10% of the previous dose every 3-6 weeks has worked for many people. See the Paxil Progress forum for more info.


Thank you! I guess I must have pretty strong methylfolate pills then, I am only taking one half of one pill per day! Oh wait----I just checked, my pills are 800 mcg not mg. Okay - I am taking 400 mcg per day.

The CBS thing is going to be a problem for me I think. I eat a pretty strict autoimmune paleo diet which really limits my food choices. I eat quite a lot of animal protein. I don't know how to get around that.... any thoughts?
 
Messages
48
Also, I forgot to mention that yesterday I started getting sores in my mouth. If I remember correctly that is one of the signs to watch for after starting methylfolate - indicating you may need more..... Does that sound right?
 
Messages
15,786
The CBS thing is going to be a problem for me I think. I eat a pretty strict autoimmune paleo diet which really limits my food choices. I eat quite a lot of animal protein. I don't know how to get around that.... any thoughts?

All of the research shows that CBS +/+ is actually the good version. Unless you have some other reason to think there's an ammonia problem, etc, I wouldn't worry about it at all.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Also, I forgot to mention that yesterday I started getting sores in my mouth. If I remember correctly that is one of the signs to watch for after starting methylfolate - indicating you may need more..... Does that sound right?
My notes say that a sore mouth and throat can be a sign of B12 deficiency. I do not know if sore mouth is the same as sores in the mouth.

Neither folate or B12 should be taken without the other as each can cause a deficiency of the other. It is a good idea to take a low dose B complex whenever you are taking any B vitamins as the B vitamins work best together.
 
Messages
48
My notes say that a sore mouth and throat can be a sign of B12 deficiency. I do not know if sore mouth is the same as sores in the mouth.

Neither folate or B12 should be taken without the other as each can cause a deficiency of the other. It is a good idea to take a low dose B complex whenever you are taking any B vitamins as the B vitamins work best together.

Thank you! I think perhaps that is what is happening. I am a little afraid to take a b multi since it made me anxious before, but maybe i can take a low dose.

Is Jarrow B-right okay?
 
Messages
48
All of the research shows that CBS +/+ is actually the good version. Unless you have some other reason to think there's an ammonia problem, etc, I wouldn't worry about it at all.

Good to know. It's a little tricky to navigate this field - seems there are so many versions of what to do!!
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Thank you! I think perhaps that is what is happening. I am a little afraid to take a b multi since it made me anxious before, but maybe i can take a low dose.

Is Jarrow B-right okay?
I’m not sure about the Jarrow B-Right. It may have folic acid which is not good for some people. It is also not real low dose.

Here are some discussions of B Complexes:
Looking for low-dose b complex...
Never ending search for a B Complex....how about this one?
B-complex problems
 
Messages
48
My notes say that a sore mouth and throat can be a sign of B12 deficiency. I do not know if sore mouth is the same as sores in the mouth.

Neither folate or B12 should be taken without the other as each can cause a deficiency of the other. It is a good idea to take a low dose B complex whenever you are taking any B vitamins as the B vitamins work best together.


I missed this comment somehow - but I do have a sore throat whenever I have this anxiety. I wonder if it could be related to low B12. Maybe it's time to order some....

Thanks!!
 
Messages
48
Increasing the methylfolate has gotten rid of the mouth sores, but I do have a constant twitch in my left eye now. Anxiety is up and down.

Maybe I need more potassium?