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My Methylation Experiment

AndyPandy

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
My ME/CFS specialist has recommended methylation treatment. I am homozygous MTHFR C677T amongst other things.

I have been dragging my feet on starting this as I wanted to build up my immune system and be clear of viruses before I started.

Well despite trying extra supplements to boost my immune system, I am still struggling with back to back viruses with hardly a break between them. I seem to be getting worse and I'm spending more time in bed.

Yesterday I was reading "A Simple Explanation of the Glutathione/Methylation Depletion Theory of ME/CFS" by Rich Von Konynenburg. It talks about some people getting more and more infections over time. This is me.

So after reading this and some prompting by @Daffodil ;) I started methylation treatment this morning.

My starting dose is 156.25mcg Hydroxocobalamin. I took this under my tongue this morning after breakfast.

This is much less than my doctor recommended, but I do not tolerate meds well and I am firmly in the start low, go slow camp.

I am going to take this by itself once a week to start with and see how it goes. Then I will add in methylfolate.

I have had a busy morning with an appointment, so it is hard to tell whether how I am feeling is related to the HB12, but one thing I noticed which wouldn't be related to overdoing it is "clarity".

I have a sense of alertness or clarity, like a fog has cleared. My instincts are that if I had too much of this I would be agitated or hyperactive mentally. I will see how it goes.

I decided to put this information in a thread rather than a blog as I want to share my experiences with as many people as possible. I have benefitted so much from other people sharing on PR and want to pay that forward now.

Best wishes, Andy.
 
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AndyPandy

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
Ha ha ha @Daffodil. No matter, it was encouragement at the right time. I have done a fair bit of reading up and planning about a methylation experiment before launching into it. :p
 
AndyPandy

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
So after 4 weeks of HB12 156mcg once a week I have now added in Methylfolate 25mcg once a week on the same day.

Boom! Things are kicking off after one dose. Feeling very fluey and horrible. A bit like the bad early days. Glad I'm going low and slow.

Best wishes to all who are experimenting with methylation.
 
AndyPandy

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
So I have continued with the same amount of HB12 and Methylfolate for the past 6 weeks now. Once a week only. I have also been taking additional potassium, magnesium and B2.

My reactions to the dose are improving. I still take it and go straight back to bed with side effects on day 1, but days 2 and 3 are not as bad now. Week 5 with HB 12 and Methylfolate was a set back but could have been due to other things going on and overdoing it.

I have decided to seek advice from MTHFR Support here in Australia regarding dosages and supplements. They are in Sydney but will do phone and Skype appointments. It seems they are naturopaths who specialise in MTHFR.

I have a phone appointment in a couple of weeks. I will let you know how it goes.

Best wishes, Andy
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Hey there, AndyPandy!! TY. What made you decide to only take it once a week? I received Hydroxy today and I would like to take it daily for the energy, perhaps but in a smaller dose. What was your rational for once a week? Glad you are seeing some improvements or at least are able to tolerate it. : )
 
AndyPandy

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
Misfit Toy said:
Hey there, AndyPandy!! TY. What made you decide to only take it once a week? I received Hydroxy today and I would like to take it daily for the energy, perhaps but in a smaller dose. What was your rational for once a week? Glad you are seeing some improvements or at least are able to tolerate it. : )
Click to expand...
Gut instinct was too sick, too sensitive to cope with daily dose to start with. Have homozygous MTHFR C677T and a number of other methylation and detox mutations. Long history of bad reactions to meds. As it is, once a week is enough to handle just now. Will see what MTHFR Support has to say. Best wishes, Andy
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Andy, the key word is clarity with the B12. I saw you wrote that above. My mind became clearer. Boom!

I took it this AM and felt that. Super low dose.

It is wearing off and I want more, but I'm scared to do so. Too much methylation brings on major pain for me. I keep thinking of Scarface and the cocaine scene with Al Pacino. That's what I want to do with the B12! :)
 
Tammy

Tammy

Senior Member
Messages
2,185
Location
New Mexico
I've been on a liquid methyl/adeno b-12 for about a week and have noticed the clearing affect. My head doesn't feel like its under water. I've decided not to do methylfolate besides what is in food.......might change my mind about that later. I've also noticed just in a weeks time with the b-12 that I don't feel as fluey. I hold the liquid in my mouth longer than what is suggested on bottle.
 
Kathevans

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Andy,

You are a reminder of one of the virtues we would all do well to deepen: patience. Holding off and taking your methyl donors only once a week is behavior I’m not sure I could maintain. Yet I am coming to realize that just such pointed attention to the body is the only way we can move forward without injuring ourselves one way or another.

I found myself in the middle of some sort of methyl-trapping-folate insufficiency only years into taking a B-Complex that had changed their formula to include methyl folate and b-12. Now, like @fprefect I’m stuck in the middle of it and trying to work my way out. Today the lesson is about lowering that B-Complex substantially and increasing my potassium. Who knows what tomorrow will bring?

It probably doesn’t matter where we begin, the journey is complex and multi-faceted. Most of all, we need to learn to pay attention. But I believe there is a way. Today anyway! :p And for your great reminder, thank you!

K
 
AndyPandy

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
AndyPandy said:
So I have continued with the same amount of HB12 and Methylfolate for the past 6 weeks now. Once a week only. I have also been taking additional potassium, magnesium and B2.

My reactions to the dose are improving. I still take it and go straight back to bed with side effects on day 1, but days 2 and 3 are not as bad now. Week 5 with HB 12 and Methylfolate was a set back but could have been due to other things going on and overdoing it.

I have decided to seek advice from MTHFR Support here in Australia regarding dosages and supplements. They are in Sydney but will do phone and Skype appointments. It seems they are naturopaths who specialise in MTHFR.

I have a phone appointment in a couple of weeks. I will let you know how it goes.

Best wishes, Andy
Click to expand...
So I have continued with the same doses and the reactions are improving. Day 1 is only half bad after bed rest. I added in 25mg of B2 once a day at some stage recently (too tired to remember) and I think this helped with the reactions.

I have been feeling like I have slightly more energy and slightly better recovery from activity. I caught a virus last week and only had it mildly and was over it in under a week. My husband was way worse than me and took longer to get over it. This is a big shift for me as usually I am the one who is worse and it can take me 1 to 2 months to get over it. Hard to say if this is definitely due to methylation, but here's hoping.

I had a phone appointment with MTHFR Support today. It was one of the best appointments I have had in the past 4 years. Too tired to go into specifics now, but based on this appointment I would recommend them.

Best wishes, Andy
 
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