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Pyroluria, Methylation, SNPs etc...

Messages
11
Hello!

I'm new here. I'm the founder of the Pyroluria group on Facebook (everyone's welcome to join https://www.facebook.com/groups/pyroluria/ ).

I've been addressing Pyroluria for about 10 years now with huge ups and downs. Recently I've done the 23andme test and a whole, huge universe in unfolding in front of me. I'm trying to make sense of it.

My main symptoms are prolonged (years) debilitating fatigue, brain fog, bad mood, depression, mental confusion. After light physical exercise I'm completely debilitated for 2-3 days with terrible migraine, general soreness, restlessness and terrible irritability.

I'm supplementing for pyroluria on and off as I believe I've taken too much vit B6 and zinc over 10 years of continuos supplementation. I've also taken virtually every supplement available.

It has been over 3 weeks on a gluten free, wheat free, dairy free, sugar free, alcohol free, smoke free regime. Not hyper strict, but very. I eat mainly meat, fish, brown rice, pulses, vegs, some goat cheese and a little yogurt.

I'm trying to address ammonia with charcoal flushes, yucca and manganese.

About 1 year ago I started taking 5-mthf and I felt great pretty immediately. Mental clarity, great mood... fairly close to normal. After 4-5 months I've started tiredness and brain fog creeping on me again until I felt really bad with huge migraines, huge inner tension with racing heart, short of breath, terribly tired. I've noticed that stopping 5-mthf helped and now it's about 10 days I'm off, feeling like my body is slowly going back to a better place. This makes me think I had an excess of methyl group donors build up.

Since I've started the diet I have red patches on groins flaring up, possible candida issues which I'm addressing (I did already in the past) with zero sugar / carbs and zero drinks diet and oregano oil + topic antifungal. I'm also treating locally a yellow toenail.

My stomach is not great, but not too bad either. I'm taking psyllum husk helping to get formed stools and I've 1-2 movements per day, fairly regular. Generally feeling a bit constipated.

My strategy is to get some tests done like hair analysis and ammonia, keep on going with the diet even if I'm worried I'm taking too much proteins (I feel my liver kind of heavy), keep supps to a minimum and experiment a little. Lithium seems to turn me into a killer so I've stopped it, but I'm thinking to try again minimum dose. Hydroxy B12 I'm taking 1/4 of sublingual pill, not every day. I'm waiting for some molybdenum to arrive.

Overall it's about 3 weeks I feel a bit better, since I've started the diet.

Below are my livewello results of 23andme.

Any comment/first impression/advise more than welcome.

Thanks a lot!
P
 

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Messages
15,786
@paquito - You probably need B12 in addition to the methylfolate. Methylfolate production is between 30 and 65% of normal based on your SNPs, and MTRR A66G means that you need 3-4 times as much B12 to recycle MTR at a normal rate.

Your temporary improvement with just methylfolate might have halted due to depleted B12 stores.
 
Messages
11
@paquito - You probably need B12 in addition to the methylfolate. Methylfolate production is between 30 and 65% of normal based on your SNPs, and MTRR A66G means that you need 3-4 times as much B12 to recycle MTR at a normal rate.

Your temporary improvement with just methylfolate might have halted due to depleted B12 stores.

Interesting. I had the idea that introducing B12 put everything off the scale so I assumed I had introduced too many methyls. Would it be a good idea according to you to stop 5-mthf and start taking Hydroxy B12?Thank you
 
Messages
15,786
Interesting. I had the idea that introducing B12 put everything off the scale so I assumed I had introduced too many methyls. Would it be a good idea according to you to stop 5-mthf and start taking Hydroxy B12?Thank you
HydroxoB12 generally is the safer form to try, especially if you think you might be reacting to an excess of methyl groups.
 

caledonia

Senior Member
@paquito - You probably need B12 in addition to the methylfolate. Methylfolate production is between 30 and 65% of normal based on your SNPs, and MTRR A66G means that you need 3-4 times as much B12 to recycle MTR at a normal rate.

Your temporary improvement with just methylfolate might have halted due to depleted B12 stores.

Yes, I agree, you've probably gotten yourself into a methyl trapping situation, i.e., more folate relative to B12. This stops methylation, which is the opposite of what you want. A better ratio is 5 parts B12 to 1 part folate, or 5 parts B12 to 3 parts folate.

So I suggest stopping the methylfolate for now, get some B12 built up and then resume.

You have a COMT mutation, so I also agree on trying hydroxycobalamin first.
 
Messages
11
That's great thank you so much. This is also the route I'm taking in the last few days. I'm starting with very little Hydroxy B12, 1/4 of a tablet sublingual to increase weekly.

What's your opinion about the diet? Is ammonia detox a crucial issue? And what about sulphites?

Thanks a lot
P