Newbie Questions-CoQ10, weight loss, exercise

[Guest guest]

I can't tell you all how much better I'm feeling, now that I've connected with

you folks. The

feeling of aloneness must have been more oppressive than I realized- Thank you!

Because I can't get into see anyone (including local MDA clinic) for 1-3 months,

I've done a

lot of research. Since the evidence seems to say it can't hurt other than the

hit in my

budget, I decided to start myself on the co-factor cocktail, based on Bruce

Cohen's

reccomendations at the 6/01 Mito conference.

If I dose by kilogram of body weight, even at the lowest reccomended dose I'm

still taking

825 mg CoQ10 /day- it sounds like you all are taking much less than that. Can

you tell

me why, especially, those who have a doctor's guidance? Is the Qgel stuff Janet

is talking

about better absorbed? Where do you get it? How do you get insurance to pay for

it?

Do most of you have the huge lag time in appointments? It's brutal here-by the

time I get

the results from my muscle biopsy it will be 6 months since the original

surgery. Does

anyone have any strategies to get yourself more front-burnered?

At about the same time I was diagnosed, I began to gain weight. some of that was

because

I had also become much less active, but now I wonder. I've been working to get

the weight

off over the last several years, without much success. I thought this was slower

metabolism, now I'm wondering if it's a damaged metabolism. Do others have this

experience?

The Neurologist I see told me I wasn't to do any exercise that makes me breathe

hard. Can

that be right? Somedays, climbing the stairs makes me breathe hard, and some

days I'm

fine. I have two young children, and we are a very active family- biking,

backpacking,

cross country skiing, hiking, etc. Everything has been getting harder over the

last couple

of years - I thought it was middle age -and we had to abort a backpacking trip

last

summer at 8,000 feet. Are there tests that can tell us if exercise is harming

us?

Has anyone approached researchers to take them on as a study subject? It seems

like we

ought to be faciniating to baby docs or PhD students, and that might be a way to

get some

intense focus on our medical issues. I partner with UC researchers in my work

(environmental restoration) and I pitch projects for them to take on all the

time. I'm

planning to approach our Exercise Physiology Department once I have lab results

to see if I

can get someone to work with me/use me as a guinea pig.

I guess this is enough for now- thanks for any answers you might have-

Kathleen