How long does it take for methylation to show full effect

[willywonkacfs]

Hello!

I've been on a methylation protocol for 2 months now. After 2 weeks I saw some improvement which has been on and off and not really progressed since then. Is this what I can expect for the future or is there a chance that I will continue to improve at say 6 months, 9 months, 1 year?

Thank you

 

[Wishful]

The problem with ME is that the answer depends on the individual. What works for one doesn't work for another. Someone might try exactly the same protocol and get gradual improvements over a year, while someone else might show improvements in days ... and then have those improvements disappear a few days later and never show any benefits from that treatment again. Maybe there will be several people who report a similar improvement/timeline, which might increase the odds that it would also apply to you, but it's certainly no guarantee for basing a continue/discontinue decision on.

Basically, for any treatment, you have to take other people's responses as "it worked this way for them, but that doesn't really mean much for how it will or won't work for me".


Irritating disease.

 

[willywonkacfs]

Thanks for the response, I guess im just looking for some hope that my improvements can continue past 2 months instead of plateauing or fading.

Irritating disease? Seems like a joke that I have the most complex disease with the worst symptoms for quality of life and there's not even a whiff of a cure. Oh and you look normal on the outside so people think its in your head! Extremely irritating, yes.

 

[hapl808]

Irritating disease? Seems like a joke that I have the most complex disease with the worst symptoms for quality of life and there's not even a whiff of a cure. Oh and you look normal on the outside so people think its in your head! Extremely irritating, yes.

Yes, mildly frustrating indeed.

t's the combination of all those things that make it infuriating - none of the kindness you would get if you had some other ailment, none of the effective treatments, and a certain level of straight up gaslighting. I find it generally easier to just withdraw and hide my illness as much as possible, which is not very possible once I slid more into severe. Oh well.

 

[Methylbabe]

Here are some of the phased reactions my Dr outlined for me that could help.

 

[GhostGum]

You know I have been doing supps and with a solid methylation protocol for probably 15 years now and it has been a gradual change of tinkering, learning and progress. In saying that I think there are other factors to my progress, the methylation treatment itself obviously never got me there, but has allowed for improvement in some symptoms and quality of life, especially cognitively.

But I recall the guideline from the b12oils website is 12-24 months, it is suppose to be a gradual thing and gradual healing, never likely to be a sudden remission.

Even after all these years too there seems learning to be done, I have known for instance B2 is important for MAO-A -/- people but never knew about higher dosing 100-400+mg which my friend and I are going to experiment with now, and which comes from the guidance of an expert here in Australia. I have also only this year gotten much more seriously into glutathione supplements which seems to have been helpful.

Have you got the cofactors in order? B2 seems pretty essential before adding other stuff like the B12, but maybe gene dependant.

 

[JES]

I have seen little evidence from actual patients though who would report feeling better in a 12-24 months' time frame. Typically ME/CFS patients respond fairly quickly to a treatment or they don't at all at least based on my own experience and the posts I have read on different forums.

There are of course exceptions like if you are let's say heavily depleted in a mineral, it could theoretically take quite a while and say, if you want to treat a chronic infection, it could take a long time to get rid of it completely.

 

[GhostGum]

I have seen little evidence from actual patients though who would report feeling better in a 12-24 months' time frame. Typically ME/CFS patients respond fairly quickly to a treatment or they don't at all at least based on my own experience and the posts I have read on different forums.

There are of course exceptions like if you are let's say heavily depleted in a mineral, it could theoretically take quite a while and say, if you want to treat a chronic infection, it could take a long time to get rid of it completely.

My understanding though when it comes to methylation or more specifically B12 treatment is it can take time to heal neurologically, but maybe it is dependant on the protocol and dosing, some people seem to be able to handle high frequent doses of B12 while others seem to have to take it slowly.

I think Greg's protocol is a reasonably slow one, where you want to start with cofactors first for a while, 3-4 weeks then introduce B12 slowly, weekly to fortnightly, maybe dependant on how you respond then build up to more frequent.

Has taken me years to get in the groove of getting a protocol right and feeling comfortable with it, glutathione this year I think has been quite helpful, and now the higher doses of B2 which I had no idea about might be interesting, especially as someone with MAO-A -/-.

I have read a lot of stories over the years of people giving up pretty quickly as well which I think is a mistake, something you need to keep tinkering with and even different brands or forms. But I also think it is important to have your personal genetic data, so you have a much more solid idea of what pathways you should be targeting.

 

[Scasy]

Hello!

I've been on a methylation protocol for 2 months now. After 2 weeks I saw some improvement which has been on and off and not really progressed since then. Is this what I can expect for the future or is there a chance that I will continue to improve at say 6 months, 9 months, 1 year?

Thank you

What exactly is a methylation protocol?

 

[Rufous McKinney]

What exactly is a methylation protocol?

something which gives me a headache.

seriously, this topic was " too complicated" for me to grasp, six years ago. Let alone now.

I can't tolerate less than a drop of B-12. It sits rotting on a shelf. I got nowhere. I can't tolerate feeling that horrible on purpose.

I take a daily vitamin that comes with some methyl groups: and thats where I end grasping this topic.

 

[Rufous McKinney]

I take a daily vitamin that comes with some methyl groups: and thats where I end grasping this topic.

I am wrong. I take the Life Extension 2 per day and IT DOES NOT CONTAIN: methyl folate.

Really? Thank you AI.

Google AI Says this:

• 
  
• 
  
• Life Extension's Formulation:
  While Life Extension 2 Per Day does contain folate, it's not specifically formulated to address MTHFR mutations. Individuals with MTHFR mutations may need to supplement with methylfolate or avoid synthetic folic acid.
  
  
  3. Methylfolate's Key Advantage:
  • Unlike folic acid, which needs to be converted by the body into its active form (methylfolate) through a multi-step process, methylfolate is already in the active form.
  • This means the body can use it immediately without requiring further conversion, potentially making it more readily available, particularly for individuals with certain genetic variations like the MTHFR mutation that can impair folic acid conversion.
  
  

  My understanding though when it comes to methylation or more specifically B12 treatment

  how does B-12 relate to B-9 (methyl folate)?