Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Another MTHFR C677T homozygous member here. Diagnosed by myself on accident through 23 and me.

Discussion in 'Genetic Testing and SNPs' started by DlanorSekao, Aug 7, 2017.

  1. DlanorSekao

    DlanorSekao

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    I have had years of suffering as a medical and Psychiatric enigma.
    Alas....maybe light at the end of the tunnel.
    I used to say the healthier I eat , the sicker I get. Possibly I know why now. The whole experience has been extremely traumatizing to say the least and has left me with severe PTSD , and Neuro symptoms and extreme depression , plus about any other Psych diagnosis out there.
    I have some really nice Snp's , that I discovered by accident when I did 23 and me for lineage info.
    2 years later I ran the data after I started taking supplements and everything went very bad to say the least.
    I didn't know that data was even there at all.
    I thought Yippee ! A Cure !
    Went to a MD that was supposed to be a Genetic Guru and all he looked at was the Homo MTHFR C677T and gave me a nice huge dose of Methyl Folate.....I'm sure you all here know how well that went , as I'm still trying to recover my brain and neuro. No other Snp's were even looked at.....Disaster !!!
    I'm 53 and my name is Ron.
    I hope to get some advice and help (and maybe even help others) as I studied orthomolecular nutrition (Phieffer , Hoffer , Supplements , etc) for 7 years trying to find my cure.

    Past exposures were tick bites from reptiles from around the world , Mite Bites also (I raised exotic reptiles for a living). Also exposure to mycoplasma , and a few other nasty things.

    Ive tested positive for Mycoplasma , West nile Virus , Duenge Fever , and a couple thers I cant remember right now. Lyme and associated co infections is still at the forefront in my thoughts , reguardless of the MTHFR , and other Snps.

    I have a mutation also (het) for FECH one of the sun sensitive porphyrias. This also concerns me as Porphyria has been mentioned more than once , also symptoms.

    Lots of Lead and Antimony exposure from Brass firearms scrounging over the years , but it never tests high in my blood , only my hair.?? Regular Drs say I don't have lead poisoning by the blood.......what do they know.
     
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  2. Valentijn

    Valentijn Senior Member

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    @DlanorSekao - Welcome!

    Good news: The common MTHFR mutations don't cause any diseases, and are very common. They aren't a diagnosis, as such. They do cause some slowing of folate processing, which can result in increased risk of birth defects for women with the mutations who have children. But even that risk disappears when eating a diet with a decent amount of vegetables or supplementing a normal amount of folate (400-800mcg).

    Are your infections active, and if so are you being treated?
     
  3. DlanorSekao

    DlanorSekao

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    I'm sure they are , but there is no medical here or anyone that knows a thing about mycoplasma , or MTHFR here.
    Its all a 4 hr drive one way and a 7 hr drive the other......I wish the house would sell so we can move !

    Maybe in theory MTHFR doesn't affect men , but in my case I can assure you it certainly does.
    I believe I overmethylated myself with Methyl B12 trying to get my levels up , and in the process ended up severely undermethylated because of a lack of REAL folate and B6.
    Its not an easy Balancing act at all. I call it riding the razors edge. Only now am I getting a bit better.
     
  4. DlanorSekao

    DlanorSekao

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    I see many here that do a balancing act with supplements and can relate to what they are doing. The thing is most Drs don't have a clue in my area , and I'm largely on my own using myself as a Guinea Pig.
    I get bloodwork done on Friday(I hope) so we can see where lots of my B vitamins , D , CBC, and thyroid are at.
    I have a few Snps that aren't helping either such as the warrior gene , vit D polymorphisms , COMT , and FUT , amd more.
    I'm chemicaly sensitive to toxins , molds , and a whole host of meds and additives.
    The Drs hate me when they see me coming as there isn't much on their drug list I can take (past experiences)
    From what I was told on a different site I just have a set of pretty messed up genetics.
    Cleaning up my diet , working on my gut (with so -so results) and supplements cautiously and in small ammounts is helping a bit.
    Problem is its hard to know what end of the snake it is I'm fighting. If you don't know exactly what the enymy is ? How can you fight him ?
    Causes tremendous stress when I can barely walk and am staggering around , and they want to put me on an antidepressant because they have no idea how (or are willing to) to test ammonia , Histamine , homocysteine , or anything else pertinent to the real problem.
    1.5 years ago when I had the West Nile Virus.......I went to the ER and was a extremely severe mess. I got a shot of Ativan and sent home !!!! Later I took the paperwork back and stuck it in their face as a Dr there had told me I was Psychotic and delusional.....lol. Yes......I was....I had a DISEASE from a mosquito.
     
  5. Valentijn

    Valentijn Senior Member

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    It has the same impact on slowing the enzyme in everyone. But the human body can tolerate a lot of slowing down of MTHFR before it causes any problems. And that's a good thing, because about 20% of the planet has the same level of MTHFR reduction as you. There aren't 1.5 billion people walking around with your health problems, however.

    And peer-reviewed published scientific research consistently shows that MTHFR activity needs to be slowed much more drastically before it causes problems. The pathogenic mutations reduce enzyme activity to 10% or less, versus the 30% seen with homozygous C677T or compound heterozygous C677T and A1298C.

    MTHFR C677T isn't making you sick. It's just a reminder to eat your veggies :p
     
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  6. DlanorSekao

    DlanorSekao

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    Is it possible that when I found out my B12 level was low and took too much that I undermethylated/ overmethylated myself ?
    The depression and other symptoms hit so suddenly , but this was before I knew I was MTHFR Homozygous.
    without tests backing anything up I have no idea where I stand. Lets just say whatever happened it was horrifying symptom wise.
    I don't know where to start at all.
     
  7. pattismith

    pattismith Senior Member

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    Hello Ron, I just received my 23andme results and saw that I am homozygote TT for this gene too....
    I have many issues too, prone to depression is one of them. I hope you will suggest me the right supplements to take for this condition.
    I had some lead in blood at a time but it went low when I stopped eating salmon/tune fish.
     

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