MTHFS & MTHFD1 The Thorn In My Side

[KenJT]

Hi All,
I feel like I'm running out of ideas on how to treat this issue. My body has issues with TCN1 & TCN2 B12 Conversion along with the MMAB conversion that convert B12 to Adenocoblamin along with issues in the last stages of Folinic acid conversion (MTHFS, MTHFD1 MTHFD1L & MTHFD2). I was on some medication approx 2 years ago that seemed to flick a switch and as caused various issues ever since. Has anyone had any luck trying to treat this? I do supplement with Metafolin, Methylcoblamin, Adenocob, Carnitine, Magnesium, B6, B1, Vit D and various supps to try fix my damaged mitochrondria etc?

 

[pogoman]

I do not take folate by itself anymore, supposedly taking that can up the risk for peripheral neuropathy (which I have).
B2, Coq10 and L-carnitine all help me.
I haven't looked for awhile if there is new research out there.

https://www.snpedia.com/index.php/Rs1801198

 

[Thehealthofholly]

Which medication were you on? If you aren’t sure, the pharmacy usually keep records for 3 years, might be worth calling.

Are the mutations homozygous?

 

[KenJT]

Which medication were you on? If you aren’t sure, the pharmacy usually keep records for 3 years, might be worth calling.

Are the mutations homozygous?

I believe i was on Cymbalta or something to that effect. If my memory serves me correct it was one of the newer types of SNRI... I would love to be able to get rid of this pressure that seems top come and go in my head. When this occurs i lose all ability to think. Yes the mutations are +/+

 

[KenJT]

I should also note that previously before this incident i could take non active b12 and receive start up symptoms. Unfortunately i did not recognize these at the time and stopped. I am guessing at that stage in my life i was only b12 deficient. After the incident with the medication i only respond with activated b12's and now need methylfolate and go back straight into deficiency symptoms if i touch Glutathionine. Prior to that time i could also supplement with glutathionine and Nac etc with no issues. I am not sure what happened but there seemed a drastic change for the worse after this time and i have been trying to find the right balance ever since. If it wasn't for @Freddd posts i don't know where i would be at. My biggest problem i still face is the pressure in my head that hits me in waves through out the day which comes and goes. I also notice a sharp cognitive decline when this hits.

 

[Thehealthofholly]

The pressure you’re talking about sounds like “brain zaps” from venlafaxine/Effexor, another SNRI. I know that cymbalta/duloxetine affects nerves through the sodium ion channel blockade. I’m not sure how that translates to CFS. I tried to read an article on dysfunctional ion channels in CFS, but it was too scientific for me.

Have you had any luck figuring out the correct supplements for MTHFS mutations? Does magnesium glycinate help with the head pressure?

 

[KenJT]

The pressure you’re talking about sounds like “brain zaps” from venlafaxine/Effexor, another SNRI. I know that cymbalta/duloxetine affects nerves through the sodium ion channel blockade. I’m not sure how that translates to CFS. I tried to read an article on dysfunctional ion channels in CFS, but it was too scientific for me.

Have you had any luck figuring out the correct supplements for MTHFS mutations? Does magnesium glycinate help with the head pressure?

Hi GoLightly716,
I only know too well the brain zaps that you are referring too. I had these coming off Pristiq for about a month and a half. I found at the time taking high volumes of fish oil helped.
As for the magnesium i have been taking quite high dosages of the supplement as the regular dose seemed to make my head go fuzzy after taking the standard dose (2 capsules) The magnesium i take is a blend of Magnesium Phospahate, Oxide, Orotate, Citrate, Aspartate and Chelate. Doubling the dose to 4 capsules and doing this twice a day has provided some relief but not cured the issue.
I have found that supplementing with the Magnesium and FMN has allowed me to use folate from foods again where before if i had any folate based foods such as Bread, Fruits, Nuts and Salad i would feel my mood shift and suffer cognitive decline within 10 minutes of consumption.

 

[KenJT]

I also believe i have issues with my Krebs cycle as i feel noticeably better when i consume a product called 'amino energy'. I have been supplementing with D-Ribose at around 2mg a day and have not noticed any difference. What is intriguing is that a few months ago i took the amino energy drink followed by my regular muilti vitamin and than took a iron pill containing Iron, Methyl B12, Cyn B12, Folinic acid and Methylfolate and a small amount of vitamin c. I than got what Freddd calls "Neurological Brightening" . The best way i can describe it is my Brain suddenly went from constant thoughts to a focus of one and it appeared the room got brighter. I than trialed taking the same supplements again this time removing any one of the combined supplements and did not achieve the same success . It seems that i needed to take the combination of the lot to achieve the brightening effect.