methyl folate & b12

[Bluebonnet08]

Has anyone had any experience taking methyl folate & methyl b-12?  These were two of the supplements recommended by the CFS specialist that I see, but I was also hoping they might have a positive impact on the POTS symptoms as well.  I am getting the MTHFR gene test as well.  

[RecipeForDisaster]

I've taken these for many years. Some symptoms did improve, my numbness and tingling most importantly. I use both sublingually. I'm quite sure I have MTHFR mutation but haven't been tested.

[TCP]

I take sublingual B12 Methylcobalamin 1000µg. I also take a vitamin D for pain. 

[p8d]

I have the mutation and used to take both.  I never noticed any changes in anything.  I have also had elevated B12 blood levels for a few years but my PCP isn’t concerned.  

[MomtoGiuliana]

I take both.

I am feeling loads better after 2 months of a severe POTS flare.  I've been taking methyl-B12 and methylfolate for about 2 months now.

[Pistol]

I take cyaconobalamine 1000 mcg IM. What is the difference between that and methyl- B12?

[MomtoGiuliana]

Pistol from what I understand cyanocobalamin requires more steps for the body to process.  Some people have difficulty processing this form of B12.  For many people probably there is no difference in which form they take.  I have noticed on support forums for B12 deficiency that many take methyl or hydroxyl rather than cyano.

[ks42]

On 7/12/2018 at 3:52 PM, Pistol said:

I take cyaconobalamine 1000 mcg IM. What is the difference between that and methyl- B12?

To add to MomtoGuiliana's explanation, some people also have genetic mutations (MTHFR) which make it impossible for them to break down the regular (cyano) form of B12, as their bodies lack the ability to go through the processing step of methylating the B12 in order to utilize it. This causes an excess to build up in the blood, but the patient also can become deficient from what I understand (my sister has the mutation). Same with folate. Methyl B12 and methyl folate are already methylated and can be utilized by someone with this mutation. Apparently, the mutation is pretty common so a lot of supplement formulas are switching to the methyl versions of these vitamins as a default. 

@Bluebonnet - I'm not able to take any B vitamins when my adrenaline issues are out of control (I can get adrenaline surges - big ones - that are present 75% of the time in a 24 hour period). When that's going on, any B vitamin, especially the methyl versions, are too stimulating and can make the adrenaline surges and insomnia worse. However, if I'm in a period where the surges aren't the dominant symptom, they are amazingly helpful. I was taking both during a two year period where I was almost completely functional again. If I started to feel POTSy during the day, I'd take an extra dose (I never took large amounts at a time, so I was micro-dosing them anyway), and I'd instantly feel better. I had a comprehensive metabolic profile test done when I first got sick, though, and it showed all kinds of B vitamin levels were messed up, including folate, so that's likely why it helped so much. I started with 1/8 to 1/4 of the recommended dose, though, and found I didn't really have to go much higher than that at any point to feel really good effects from them.

[MomtoGiuliana]

ks42--that is so interesting.  When I was in a very severe POTS flare in May and June I could not tolerate B12 shots nor could I take more than 1,000 mcg of B12 in any form without more severe symptoms.  Now that I am out of the worst of the flare I am taking 2500 mcg daily with little noticeable affect.  I've even tried taking 5,000 and have felt OK.

[RecipeForDisaster]

Any form of cyanocobalamin made my deficiency symptoms much, much worse-intolerable. IM or intranasal was the worst. I tolerate 5,000mcg sublingual methylcobalamin just fine. 

[Potsie1990]

I get the b12 shot from time to time. I also take a b complex vitamin gummy from time to time also when I can remember. The shots are nice because it lasts a lot longer 

[zerohours000]

1 hour ago, Potsie1990 said:

I get the b12 shot from time to time. I also take a b complex vitamin gummy from time to time also when I can remember. The shots are nice because it lasts a lot longer 

I was told my doctor to not take b12 methyl.  My b12 is already above normal (926) but I suspect it’s because I’m not absorbing it due to an underlying autoimmune disease (not diagnosed).  Early on I had a myriad of symptoms that fit b12 issues.  I still do.  There is something called Functional b12 Deficiency, but my PCP doesn’t think that’s it.  But he couldn’t know this, I think, without running certain tests.  

[Bluebonnet08]

Thanks for the input!  Is there a good brand that you could recommend and what amount should I start with?  

It's interesting that B vitamins seem to make the surges worse when the system is already reeved up.  I've had that experience with many supplements as well. 

I am going to start on the methyl folate & B-12 and hope it makes a difference.

[WanderWonder]

I like Jarrows Methyl Folate and Methol B12 because it can be melted under the tongue. It's a mega dose. It tastes good, and can be broken into pieces if needed.
I have one MTHFR mutation, and some other random ones that say I can't absorb b12 well.

I've been taking it daily for about 6 months, and have been breaking it to smaller chunks to get less lately. I was feeling sad with ocassional tingling in my extremities when I first started talking it, but after the first month I'm no longer sad with no more tingles, so it definitely helped me.

 

[CallieAndToby]

Oh yea 2 years of experience. I have ME as well. I have tons of genetic mutations but my doctor put me on the mehtyl folate and we added B12 and niacin. They changed my life, I went from being homebound to leaving the house and having boost of energy and my ocd reduced by 75%. I do have one of the MthFR homozygous mutations. I had to quit taking them for the most part b/c of insomnia side effects, however very soon I'm seeing an ME specialist down South Florida and she heads up the ME gene study and does genetic medicine so I'm hoping she can really help. However to answer your question, never helped my POTS. 

[CallieAndToby]

On 7/17/2018 at 4:53 PM, zerohours000 said:

I was told my doctor to not take b12 methyl.  My b12 is already above normal (926) but I suspect it’s because I’m not absorbing it due to an underlying autoimmune disease (not diagnosed).  Early on I had a myriad of symptoms that fit b12 issues.  I still do.  There is something called Functional b12 Deficiency, but my PCP doesn’t think that’s it.  But he couldn’t know this, I think, without running certain tests.  

I can't take normal B12, makes me quite quite ill. But when I use methyl B12 which has to be used with methyl folate, I don't have side effects.