Sorry I haven't been able to take part in this discussion as I haven't been too good recently and spreading myself too thin. In bed now with a chest infection.
So I haven't read all the thread, but wanted to say briefly (and perhaps ill say more another day) that I had mitochondrial function testing with Dr Myhill in 2010. Initially I was very excited to get some results that showed real disease process in my body.
My results were similar to many other PWME and it showed I was very very ill with a functioning score of only 25% on Bells scale. I also had problems with ATP, numerous nutritional deficiencies, very high cell free DNA, problems with translocator protein membrane, severe antioxidant issues etc etc.
I since tried all the mito support supps suggested. Most of them I couldn't tolerate so haven't been able to pursue this. The ones I could made no difference to me at all. I still take them in case they are helping in ways I cant feel.
In the end I have spent a lot of money on this when all it really showed was that I am very sick. It isn't specific enough to PWME - people with flu or having chemo have high cell free DNA. My GP dismissed it and despite symptoms they are not interested in muscle biopsies for testing. One GP told me the report and testing was 'too difficult' for him to understand. Despite low levels of CO Q10 I was refused a prescription for it in the UK, which would have made it free for me.
I don't honesty think mitochondria is the ROOT cause of this illness, or my illness. It was a red herring that sent me off on years of trying to fix it when I have now found out that I actuall have two possible bacterial infections which need treating. No amount of mito support is going to fix those, although I do believe it is part of the picture.
all the best
Justy
So I haven't read all the thread, but wanted to say briefly (and perhaps ill say more another day) that I had mitochondrial function testing with Dr Myhill in 2010. Initially I was very excited to get some results that showed real disease process in my body.
My results were similar to many other PWME and it showed I was very very ill with a functioning score of only 25% on Bells scale. I also had problems with ATP, numerous nutritional deficiencies, very high cell free DNA, problems with translocator protein membrane, severe antioxidant issues etc etc.
I since tried all the mito support supps suggested. Most of them I couldn't tolerate so haven't been able to pursue this. The ones I could made no difference to me at all. I still take them in case they are helping in ways I cant feel.
In the end I have spent a lot of money on this when all it really showed was that I am very sick. It isn't specific enough to PWME - people with flu or having chemo have high cell free DNA. My GP dismissed it and despite symptoms they are not interested in muscle biopsies for testing. One GP told me the report and testing was 'too difficult' for him to understand. Despite low levels of CO Q10 I was refused a prescription for it in the UK, which would have made it free for me.
I don't honesty think mitochondria is the ROOT cause of this illness, or my illness. It was a red herring that sent me off on years of trying to fix it when I have now found out that I actuall have two possible bacterial infections which need treating. No amount of mito support is going to fix those, although I do believe it is part of the picture.
all the best
Justy