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Trapped (and methyl trapped)

Discussion in 'Lifestyle Management' started by Ninan, Jun 16, 2016.

  1. Ninan

    Ninan Senior Member

    I have had ME/CFS for 12 years and this is the first time I feel total hopelessness. I have been doing okay on Fred's methylation program. Without it I'm terribly sick and with it I can at least see friends once in a while.

    I November last year I got a candida infection. That led to allergies to vitamin C and almost all foods, and since I needed 5 grams of C/day for methylation to work I had to stop the program in March. To my amazement I didn't get extremely sick, I felt pretty good. Since then I've been okay and I realized fasting one day a week made it even better.

    A few weeks back I've had adrenal symptoms and started crashing. I've realized the energy I have is probably increased cortisol due to candida infection. So I've been going around with high cortisol and using energy I guess I didn't have for months. When I crash now, my immune system stops working, I get lots of infections symptoms within hours and then like a miracle: I bounce up again. I guess it's the increased cortisol from fighting the infections.

    I realize this isn't going to work for long and that it's probably true that the longer I stay like this, the worse off I will be. But mending my gut and getting rid of the infection that keeps me going would cause me to crash so hard I'm not sure I'd survive. Or at least I suspect I might have severe neurological symptoms. I can feel them coming on even now. I was going there three days ago and it was extremely frightening: I felt I couldn't move my arms, breathing took too much energy. I felt like I was dying.

    Part of the story is that I met a fantastic guy in November last year, same time as this started. He's the best I've ever met, we're planning on moving in together and I've been so happy. Now everything is falling apart. II just won't believe that we only got seven months together.

    I'm trying to change my situation. I'm ordering the ONE test from Genova and will have it analyzed by a methylation doctor. But really, how big is the chance I'm going to get out of this? I'm 36 and pretty sure my life is over. My life, and my love. I feel trapped, desperate, sad and I'm scared to death.

    I felt like putting this together, maybe more or less for my own sake. I don't think anyone can help me but sometimes just expressing the situation helps a bit with coping.

    I don't want to die and I don't want to spend my life in bed with severe neurological symptoms. But I'm starting to realize that might be where I'm going.
  2. helen1

    helen1 Senior Member

    @Ninan, I feel for you. This is a tough place to be in.

    To clarify, are you saying that if you cured the candida infection, you fear you might crash horribly due to a critically low cortisol level?

    If that's what you're predicting, have you thought of treating the candida more slowly while also taking adrenal extract or hydrocortisone? I know those are tricky meds to take, but if you took very small amounts and only for a short time, it could be helpful. Just a thought...
    Ninan likes this.
  3. Ninan

    Ninan Senior Member

    Yes. Or just due to over exertion since it's all just cortisol. Just woke up sweating with high pulse, can feel it coming on.

    I can't tolerate even crumbles of any adrenal extract (even tried Wilson's adrenal rebuilder) and my doctor won't prescribe hydrocortisone. I was thinking about modiodal but not sure if it would help or make it worse.

    Anyway I suspect it might be too late. I guess maybe I'll bounce up a few times more. Maybe if I try to pace and save that energy for healing... Or if I can get hydrocortison somewhere else. But I crash even from folic acid so I wonder if HC would be too stimulating.

    Thing is I'm terribly sick without methylation. And now it's that and adrenal and crash after stress. I'm not brave enough to go down there.

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