How do I get to talk to someone about the PEMT gene?
All my adult life I have experienced a pain condition that used to be called Fibromyalgia, but that has now been orphaned with no diagnosis. That condition has involved painful stiffness and hardening of some aspect of the muscle and/or connective tissue, that, if over-exercised, results in injury. This hardening can be easily detected by touch as the hardened tissue is quite lumpy and hard to the touch. In my case is was not accompanied by fatigue. It is responsive to barometric pressure in that it improved as low barometric pressure and gets considerably worse with high pressure. I will continue to call this FMS as there is no other diagnosis for it.
35+ years ago, I took Lecithin for something else, and my FMS symptoms improved dramatically - did not completely go away but I could function normally, with a little pain, but without injuring myself. I found that I needed a comparable level of fish oil for the lecithin to work, and at least some milk, maybe for the saturated fat, maybe for something else. All I knew is that it worked for me and kept me going, but that I regressed immediately if I missed a dose - a large dose 3 times a day. So for some 35 years I have been taking lecithin and fish oil 2 times a day, with a glass of milk once a day, to live a functional life.
Then in 2022 I got what was called covid, and when I left hospital, the FMS treatment was no longer working as effectively, and in addition, I had many vagus nerve issues and fatigue. The vagus nerve issues have largely resolved over time but the worsened FMS symptoms have not. I still have to take the lecithin to function at all, but need a higher dose to achieve less pain and stiffness relief. I have dropped below the level necessary to function normally in life.
I have recently been studying my genes. I have a whole range of variants on most of my methylation genes and vitamin d processing genes, as well as the PEMT gene, and understood the importance of the PEMT gene. I realised why I had been supplementing with Lecithin for so many years.
Then I came across an article on Substack by Chris Masterjohn, and discovered from taking his on-line quiz, that I am an 8 egg person - now that is a very high dose of choline, that I pretty much had to double my intake to achieve. Even with all the Lecithin and 2 eggs daily, i was only at about 4 eggs. That has left me pushing up my choline with various other supplements.
However, that has not achieved any reduction in symptoms, which may come down to the inability of my body to process the choline into phosphatidylcholine, meaning lecithin may be my only viable supplementation.
How do I find someone to talk to about this? As a pensioner I cannot afford the outrageous specialist fees charged for medicine not supported by the subsidised medical establishment in Australia, and standard GPs have no interest whatsoever in what I call FMS, let alone in genetics. I am putting it all together as best I can, but am seeing little health progress with all I am doing currently. Up until now I have resisted taking glutathione as I am nervous about supplementing with anything that the body is supposed to manufacture. In addition, the local pathology will not permit a glutathione test, so I don't know what my levels are, but by homocysteine is nicely mid range, so I am presuming my existing lecithin supplementation has achieved that.
SelfDecode says this about PEMT variants:
Primary SNPs:
PEMT rs7946
'T' = Doesn't correlate with obesity
'C' = Correlates with obesity
Population frequency:
Around 37% of the general population has the “CC” genotype
Around 10% of European descendants have this genotype
PEMT rs12325817
'G' = Correlates with lower rates of diabetes
'C' = Doesn't correlate with diabetes
Population frequency:
Around 61% of the general population has the “CC” genotype
Around 31% of European descendants have this genotype
Other important SNPs:
PEMT rs4646404
'A' = Doesn't correlate with abdominal obesity
'G' = Correlates with abdominal obesity
Population frequency:
Around 74% of the general population has the “GG” genotype
Around 43% of European descendants have this genotype
PEMT rs4646343
'T' = Doesn't correlate with abdominal obesity
'G' = Correlates with abdominal obesity
What are the three variants on the PEMT gene? I only know about two, both severely compromised (I think):
Ancestry rs7946 (T/T)
Ancestry rs12325817 (C/C)
How do I get to talk to someone about the PEMT gene?
All my adult life I have experienced a pain condition that used to be called Fibromyalgia, but that has now been orphaned with no diagnosis. That condition has involved painful stiffness and hardening of some aspect of the muscle and/or connective tissue, that, if over-exercised, results in injury. This hardening can be easily detected by touch as the hardened tissue is quite lumpy and hard to the touch. In my case is was not accompanied by fatigue. It is responsive to barometric pressure in that it improved as low barometric pressure and gets considerably worse with high pressure. I will continue to call this FMS as there is no other diagnosis for it.
35+ years ago, I took Lecithin for something else, and my FMS symptoms improved dramatically - did not completely go away but I could function normally, with a little pain, but without injuring myself. I found that I needed a comparable level of fish oil for the lecithin to work, and at least some milk, maybe for the saturated fat, maybe for something else. All I knew is that it worked for me and kept me going, but that I regressed immediately if I missed a dose - a large dose 3 times a day. So for some 35 years I have been taking lecithin and fish oil 2 times a day, with a glass of milk once a day, to live a functional life.
Then in 2022 I got what was called covid, and when I left hospital, the FMS treatment was no longer working as effectively, and in addition, I had many vagus nerve issues and fatigue. The vagus nerve issues have largely resolved over time but the worsened FMS symptoms have not. I still have to take the lecithin to function at all, but need a higher dose to achieve less pain and stiffness relief. I have dropped below the level necessary to function normally in life.
I have recently been studying my genes. I have a whole range of variants on most of my methylation genes and vitamin d processing genes, as well as the PEMT gene, and understood the importance of the PEMT gene. I realised why I had been supplementing with Lecithin for so many years.
Then I came across an article on Substack by Chris Masterjohn, and discovered from taking his on-line quiz, that I am an 8 egg person - now that is a very high dose of choline, that I pretty much had to double my intake to achieve. Even with all the Lecithin and 2 eggs daily, i was only at about 4 eggs. That has left me pushing up my choline with various other supplements.
However, that has not achieved any reduction in symptoms, which may come down to the inability of my body to process the choline into phosphatidylcholine, meaning lecithin may be my only viable supplementation.
How do I find someone to talk to about this? As a pensioner I cannot afford the outrageous specialist fees charged for medicine not supported by the subsidised medical establishment in Australia, and standard GPs have no interest whatsoever in what I call FMS, let alone in genetics. I am putting it all together as best I can, but am seeing little health progress with all I am doing currently. Up until now I have resisted taking glutathione as I am nervous about supplementing with anything that the body is supposed to manufacture. In addition, the local pathology will not permit a glutathione test, so I don't know what my levels are, but by homocysteine is nicely mid range, so I am presuming my existing lecithin supplementation has achieved that.
Where do I go to from here?