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Giving up on methylation.

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50
I take Niacin only in low doses because of severe adverse effects at a certain threshold. In the context of the IDO trap, I would recommend taking low doses of Niacin, Niacinamide, Nicotinamide riboside, or any other Niacin metabolite that helps to support the NAD+ buffer. But most importantly, and I often don't remember to mention this because I assume it's common knowledge, I take Coenzyme Q10.



There exist mRNA tests that can screen the whole range of metabolites at once. But not many laboratories offer this. I'm from Germany, so maybe someone else knows where to test this in the US. For instance, I found this US laboratory that offers something similar, though not complete. Just make sure that homocysteine is also tested if it isn't included. I think this is the most important marker. If you also have methionine, cysteine, SAH, or SAMe levels, this allows for better profiling of the methylation status.

This website explains the extended methylation cycle in simple terms. Regarding NAD, I'd refer to this Wikipedia article.



Is there any particular reason why you take creatine? For Q10, there is a blood test available as well.


I was taking creatine because Chris Masterjohn said that a lot of methylation goes into creating creatine so supplementing it frees up methyl groups. Since I wasn't doing well on folate and b12, taking creatine helped my histamine intolerance slightly.
 

nerd

Senior Member
Messages
863
I was taking creatine because Chris Masterjohn said that a lot of methylation goes into creating creatine so supplementing it frees up methyl groups. Since I wasn't doing well on folate and b12, taking creatine helped my histamine intolerance slightly.

I'm just a bit sceptical about creatine supplementation because CFS/ME is associated with excessive creatinine excretion and creatine supplementation pushes this even further. The consequential creatininuria can flush out other things such as neurotransmitters and electrolytes along with it. The same might be a problem with CFS/ME drug candidates that cause polyuria. Creatine is metabolized from glycine, which might be depleted along with creatine. The methylation that has to go into the synthesis of creatine can be provided by taking TMG. But this only works in theory because it's impossible to estimate the different ill phases of the methylation cycle and ATP cycle. I think you just have to try what works for you the best and when.
 
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50
I'm just a bit sceptical about creatine supplementation because CFS/ME is associated with excessive creatinine excretion and creatine supplementation pushes this even further. The consequential creatininuria can flush out other things such as neurotransmitters and electrolytes along with it. The same might be a problem with CFS/ME drug candidates that cause polyuria. Creatine is metabolized from glycine, which might be depleted along with creatine. The methylation that has to go into the synthesis of creatine can be provided by taking TMG. But this only works in theory because it's impossible to estimate the different ill phases of the methylation cycle and ATP cycle. I think you just have to try what works for you the best and when.

Omg I didn’t realize that.. I know Chris recommended to take it with glycine but it made me feel bad so I didn’t. Maybe that’s why I feel bad now because I reduced my glycine? But my body would have made more glycine by now right? It’s been a few weeks since I stopped the creatine.
 
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50
Got my folate and b12 results back. They’re mid range, which is good because I wanted to make sure they weren’t high like they would be in a functional deficiency. They’re a bit higher than when I started taking the supplements 3 months ago.. which makes sense.

Still waiting for my thiamine lab.
 
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50
Have you considered a thiamine/vitamin B1 deficiency? Many of your symptoms fit those for that condition. See here for more info.

If you look around the forum, you would be able to find reports from several members who found that supplementing with thiamine helped with problems that arose after methylation treatment. See, for examples, here and here.

Also, there have been cases where thiamine supplementation helped resolve problems with electrolyte imbalance, including low potassium. See here.

@Eastman @Oberon Thiamine helped my palpitations and headache but made me feel very weak. Any ideas?
 

Oberon

Senior Member
Messages
214
@Eastman @Oberon Thiamine helped my palpitations and headache but made me feel very weak. Any ideas?

It's good that you're getting at least a partially positive reaction. Two things I would try and this is purely theoretical low risk things you can try.

Try putting a teaspoon of sugar in a cup of water and see if it helps or having a sugary drink like orange or apple juice. Just a theory but there's some indications in studies that thiamine can have an impact on glycemic levels, i.e. diabetes. It's possible taking thiamine is giving you a bit of a low blood sugar reaction. A bit of sugar would make you feel better very quickly.

Other thing I would try is having a little bit of salt. Sometimes when I'm feeling extra weak (i.e. more than usual CFS) I take a bit of salt and feel better rather quickly. Since thiamine does play a role in electrolyte balance it makes sense that a bit of salt or potassium could possibly help.
 
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50
If anyone is interested, I got my lab results back.

Serum potassium: 4.0 (3.5-5.3)
RBC potassium: 92 (90-11)

Whole blood thiamine: 85 (78-185)

Not sure what to make of it. Potassium supplements are giving me palpitations now (serum and RBC magnesium are at good levels) so I'm not going to risk taking those. I'll have a few bananas every day but since I'm not taking any folate or b12 and my potassium levels are decent, I don't think potassium is the issue anyways.

Thiamine has helped to calm my racing heart and allowed me to get to sleep, but something still feels off. Drinking juice with the thiamine supplement did help the weakness, so thank you Oberon.
 
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50
Going to document my experience this last week here for reference:

Wednesday, 4/28 - Horrible episode of profound weakness with decreased strength in extremities. Brother sat with me for about 45 minutes. Heart was racing, palpitations, and chest tightness. Over the course of the 45 minutes, I took about 100 mg of thiamine hcl. This was my first time taking it. The palpitations ceased, heart rate slowed, and I was able to sleep lying flat for the first time in 2 weeks (heart would race and palpitations increased if I wasn't propped up on 3 pillows).

Thursday, 4/29 - Woke up feeling very weak. However, no episode occurred. I took another 75 mg thiamine hcl. Due to the weakness I experienced, I decided I was going to wait for my thiamine lab result to come back before taking anymore. I was not aware that whole blood thiamine is not an accurate indicator of status. Drinking sugary juice helped slightly with the weakness.

Friday 4/30 - Sunday 5/2 - No episodes! Except one small one on Saturday after forcing myself to go to the mall with my sister to look for her bridesmaids dresses. However, this episode was mild and did not escalate. No supplements taken during this time.

Monday, 5/3 - Wednesday 5/5 - Thiamine whole blood came back on the low end of normal. No episode, just felt weak. Periods of chest tightness and shallow breathing. No supplements taken.

Thursday, 5/6 - Stayed awake the entire night with palpitations and feeling like my breathing was shallow. Twice I fell asleep but woke in a freight due to sleep apnea. At around 4 AM, I felt desperate enough to try thiamine again. I took a small crumb. Palpitations went away and I was able to sleep for 4 hours.

Friday, 5/7 - Took about 10 mg of thiamine hcl over the course of the day. Was surprised that it did not have the same positive effect as previous times...even the night before. I actually felt horrible by the end of the day. My body felt inflamed, weak, and I had a bad headache. Felt discourage because I thought thiamine was the answer. Either it isn't thiamine or I am missing a cofactor. I have B-Minus from Seeking Health here that I am considering trying to get the other B vitamins without any folate or b12. Still trying not to touch those again anytime soon.

I'm concerned because according to Dr. Lonsdale's articles, continuing to take B1 will eventually lead me to need folate and b12. I feel like those are what got me in this mess in the first place. Don't know what I'll do at that point.
 

seamyb

Senior Member
Messages
560
Hi @xinamatusx how are you doing now?

I just wanted to draw your attention to the line of treatment I've been trying recently. I became intrigued by it when I started to think about other possible causes of air hunger. I get this from from B12 just like you.

The thread detailing what I've been doing is here

https://forums.phoenixrising.me/thr...r-nasal-mold-triggered-significant-pem.75311/

I start to come in around page 3 or so.

I suspect I have a chronic fungal sinus infection from exposure to mold and water damage. Have you ever been exposed to this?

I'm inhaling iodine vapour in an attempt to kill microbes and have been doing this for 8 days. Already I am seeing promising signs.

I think you should watch this conversation, because the air hunger from b12 etc is very in line with my version of this disease.
 

Methyl90

Senior Member
Messages
273
If anyone is interested, I got my lab results back.

Serum potassium: 4.0 (3.5-5.3)
RBC potassium: 92 (90-11)

Whole blood thiamine: 85 (78-185)

Not sure what to make of it. Potassium supplements are giving me palpitations now (serum and RBC magnesium are at good levels) so I'm not going to risk taking those. I'll have a few bananas every day but since I'm not taking any folate or b12 and my potassium levels are decent, I don't think potassium is the issue anyways.

Thiamine has helped to calm my racing heart and allowed me to get to sleep, but something still feels off. Drinking juice with the thiamine supplement did help the weakness, so thank you Oberon.

laboratory potassium values are useless in my experience. What matters is to introduce it when you take folate / B12 / alcar.
 

Lalia

Senior Member
Messages
127
Location
Australia
@xinamatusx if you work up the courage to try methylation again, you may be interested in the b12 oils protocol, which looks to build co-factors and B2 before finally adding B12.
More information can be found by searching ‘b12 oils’ or ‘Greg Russell Jones’ on PR’s Google Site Search.
He has a website with a clear overview of testing, a step by step protocol, and there’s a FB group for people doing the protocol to learn more. So there’s a fair bit of support available, if you feel this is the right approach for you. More info at b12oils.com and b12oils.com/rnb