So, after over 2 years of doing the rounds to have everything tested and excluded, learning about pacing, tracking my activities and refining my routines, and waiting for my Charite appointment, I now found myself with no future actions pending and nothing to do.
I read the last two lines of their letter again:
I took this to mean that they would not be available for any questions from me, a patient. Having obtained my diagnosis, I was now on my own again with nothing but their list of treatment recommendations, in which they appeared to have thrown in everything but the kitchen sink.
Until now I had avoided experimenting with supplements and self-medication, being concerned that, not knowing what I was doing, it may lead to unintended consequences / a worsening of my ME, that any relief found may only be temporary until my body re-adjusted and took me back to square one or worse, and a reluctance to give my money to people making bold unproven claims.
However, the choice now was between inaction (not having anything left to do), or taking a punt on the advice of the professors in white coats from the Charite. I must admit I’m a sucker for authority, so after having ignored all the supplement advice and threads on PR since I joined, I decided that with the blessing of the Charite, now was the time to dip my toes into the supplement waters.
I went through the letter again, making a list of the supplements that might apply to / benefit me. The list contained Zinc, D3, NADH, Omega 3, B12, and Coenzyme Q10. I decide to trial them seperately, so that I could see which one was doing what.
First up were the easy ones, Zinc and D3.
Zinc
My zinc level was 10.1 µmol/l (whatever that means) when it should have been in the range 12.0 – 26.0.
The Charite recommended 40mg per day for 28 days. I took 12 mg per day for 100 days, which works out as the same amount spread over a longer time, as the packet said I shouldn’t take more, and I’m a cautious soul who didn’t want to exceed the recommended daily dose by too much.
At my next blood test with my GP, my zinc level was 7.44 mg/l (recommended range 4.0 – 7.5). They seem to be using a different scale, but I took this to mean that I have gone from below the bottom of the recommended range to near the top. So I seem to have got my zinc level up to where it should be, and no longer need to take it, so I've stopped.
D3
My D3 level (or more precisely "25-OH-Vitamin D3 Se", whatever that means) was 26.6 nmol/l when it should have been in the range 50.0 – 150.0.
The Charite recommended “1000 E” per day. I took “1000 IU” (which means “25 µg” – no I don’t know what any of these units mean either, but I wish they’d all use the same ones) per day for over 5 months.
At my next blood test with my GP, my vitamin D level (or more precisely "Vitamin D (25-OH)" was 32 ng/ml (recommended range 30 – 60). Not to be disheartened by all these different units and scales, I concluded that I’ve just about pulled myself up to the recommended range. I am continuing to take vitamin D, mainly because the box is still half-full of pills and I’ve paid for them. Also because I’m still near the bottom of the recommended range, and as I don’t go out much I should probably maintain my level with a Vitamin D supplement, which doesn’t seem to be doing me any harm.
Which is more than can be said for my experiments with NADH and CoQ10 …
I read the last two lines of their letter again:
I took this to mean that they would not be available for any questions from me, a patient. Having obtained my diagnosis, I was now on my own again with nothing but their list of treatment recommendations, in which they appeared to have thrown in everything but the kitchen sink.
Until now I had avoided experimenting with supplements and self-medication, being concerned that, not knowing what I was doing, it may lead to unintended consequences / a worsening of my ME, that any relief found may only be temporary until my body re-adjusted and took me back to square one or worse, and a reluctance to give my money to people making bold unproven claims.
However, the choice now was between inaction (not having anything left to do), or taking a punt on the advice of the professors in white coats from the Charite. I must admit I’m a sucker for authority, so after having ignored all the supplement advice and threads on PR since I joined, I decided that with the blessing of the Charite, now was the time to dip my toes into the supplement waters.
I went through the letter again, making a list of the supplements that might apply to / benefit me. The list contained Zinc, D3, NADH, Omega 3, B12, and Coenzyme Q10. I decide to trial them seperately, so that I could see which one was doing what.
First up were the easy ones, Zinc and D3.
Zinc
My zinc level was 10.1 µmol/l (whatever that means) when it should have been in the range 12.0 – 26.0.
The Charite recommended 40mg per day for 28 days. I took 12 mg per day for 100 days, which works out as the same amount spread over a longer time, as the packet said I shouldn’t take more, and I’m a cautious soul who didn’t want to exceed the recommended daily dose by too much.
At my next blood test with my GP, my zinc level was 7.44 mg/l (recommended range 4.0 – 7.5). They seem to be using a different scale, but I took this to mean that I have gone from below the bottom of the recommended range to near the top. So I seem to have got my zinc level up to where it should be, and no longer need to take it, so I've stopped.
D3
My D3 level (or more precisely "25-OH-Vitamin D3 Se", whatever that means) was 26.6 nmol/l when it should have been in the range 50.0 – 150.0.
The Charite recommended “1000 E” per day. I took “1000 IU” (which means “25 µg” – no I don’t know what any of these units mean either, but I wish they’d all use the same ones) per day for over 5 months.
At my next blood test with my GP, my vitamin D level (or more precisely "Vitamin D (25-OH)" was 32 ng/ml (recommended range 30 – 60). Not to be disheartened by all these different units and scales, I concluded that I’ve just about pulled myself up to the recommended range. I am continuing to take vitamin D, mainly because the box is still half-full of pills and I’ve paid for them. Also because I’m still near the bottom of the recommended range, and as I don’t go out much I should probably maintain my level with a Vitamin D supplement, which doesn’t seem to be doing me any harm.
Which is more than can be said for my experiments with NADH and CoQ10 …