Re: Newbie Questions-CoQ10, weight loss, exercise

February 5, 2006

Kathleen

I take 960 mg. of Q-gel which is more bioavailable than regular CoQ.

My MDA neuro is now recommending 40-60 mg. per kilo. That is really

alot, but some Parkinson's research has shown that little benefit was

seen under 1200 mg. per day.

I have found no way to hurry up appts, but now that I have an MDA

neuro, I see him every 3 months. I also see Dr. Cohen once a year.

Most of the time, it is just an update and some labs being ordered,

unless a new problem comes up. This has taken several years, so please

try to be patient. At least we have one another for support during the

wait which is more than there was when I was diagnosed.

I have a weight problem. I have always said that 1000 calories caused

weight-gain and no one believed me. Dr. Cohen told me to only loose

1-2 pounds a month. At that rate, I had better live a very long time.

I have been able to loose a little by resting (often means a nap) when

I feel hungry and it is not meal time. This was impossible when I was

still working.

On the exercise front - I use the hard breathing as a gauge of when to

stop. I can no longer do much. One of the hardest things for me to do

was give my cross country ski equipement away. I kept thinking that I

would one day get back to it. After I stopped pushing myself

physically, my progression of new symptoms seemed to slow down.

I have tried entering mito studies. I did send some blood off to three

researchers who wanted it and took part in a study of the emotional

factors of mito. I have worked with med students in an 18 month

program that is for them to learn about a chronic disease and how it

impacts the entire life a person. I am on the list for another 2

students. If you hear of the need for a guinea pig, I'm available.

laurie

> 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

>

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February 5, 2006

As far as the qgel goes I basically take less than recommended of the 5-10 times

body weight in kilos because of three reasons--the main two are because I have

mild symptoms, what I am taking is helping, and the expense factor. My son

needs it more than I do as without it he sleeps about 20 hrs a day just with

getting a virus. He also has not had an er visit for extreme constipation in

just over 3 years--since starting the carniqgel. We have a very limited budget

so I put most of our money into the carniqgel for him.

The other reason--and I have not asked him why yet--is that the doc in Milwaukee

who knows alot about melas and diagnosed us and others says the standard adult

dose of coq10 is 125 mg twice a day. Does not matter what your weight is.

As far as physical activity--we used to hike and stuff but do not do too much

anymore as my legs get tired easily--even walking around a super walmart. We do

still do it however and I try to plan it for a friday night or saturday when I

will have a full day to sleep and recover the next day.

Janet Sample