Re: Difficult issue - any recovery of abilities with treatment?

[Guest guest]

Yes, I've had major improvement in various groups of symptoms with

riboflavin, carnitor, rx potassium, creatine & K-Phos neutral combined. Each

has addressed different issues. For me, recovery from a crash is primarily

patience, rest, pacing, diet, fluids. I do not change my cofactor doses at

all, in fact, making changes in doses can make it harder for my body to

regain its own fragile metabolic balance. YMMV.

Barbara

> Difficult issue - any recovery of abilities with

treatment?

>

> It seems that some of us have been happy with our " mito cocktail "

> results, but has anyone actually felt improved versus staying the

> same? I would say that I do feel improved compared to when I first

> got ill, in fact, Kent, I am able to play sports (hockey and soccer)

> again, when I was unable to even carry my equipment when I first got

> ill. I still can't tolerate light exercise, but can handle aerobic

> exercise using my placard to avoid light walking as much as possible.

>

> That doesn't mean I don't have some cognitive and weakness issues, but

> I have regained some abilities that I thought were long gone.

>

> One thing that seems to be a trend on this list is that recovery from

> crashes seems to be a combination of rest and the mito cocktail. Is

> that a correct assumption?

>

> I guess I just don't want people to give up hope based only on a

> potential or confirmed diagnosis of mitochondrial disease...

>

> Take care,

> RH

[Guest guest]

RH

What works for me for a crash is sleep (rest won't do it), increasing

my CoQ10 for a few days and drinking Gatorade. This is all per my

neuro.

My son who was very symtomatic as a child and young adult (using a

power wheelchair) has improved to the point that he walks the dog 3-5

miles several times a week with no cocktail. He does use CoQ10,

Creatine and Gatorade for the occational crash (like moving).

laurie

> > One thing that seems to be a trend on this list is that recovery from

> > crashes seems to be a combination of rest and the mito cocktail. Is

> > that a correct assumption?

[Guest guest]

> My son who was very symtomatic as a child and young adult (using a

> power wheelchair) has improved to the point that he walks the

> dog 3-5 miles several times a week with no cocktail. He does use

> CoQ10, Creatine and Gatorade for the occational crash (like moving).

That is nice to hear about your son's improvement - I find Gatorade

helps me a lot as well. I guess by " rest " I essentially meant " bed

rest " or sleep, just sitting around doesn't work, but lying in bed not

sleeping seems to rejuvenate me a bit (my husband brings me my food so

I would be only out of bed to use the bathroom). It is interesting I

get tired sometimes, but other times am fatigued (kind of weak and

heavy for want of a better description) but not sleepy.

Take care,

RH

[Guest guest]

I am MUCH MUCH better on the cocktail than before I started taking it.

I showed a left ventricular diastolic dysfunction on a couple of echos

in the last couple of years. I upped my daily COQ10 levels and my

recent echo is perfectly normal. Same cardiologist and techs too. Yes,

improvement can happen.

ohgminion wrote:

>It seems that some of us have been happy with our " mito cocktail "

>results, but has anyone actually felt improved versus staying the

>same? I would say that I do feel improved compared to when I first

>got ill, in fact, Kent, I am able to play sports (hockey and soccer)

>again, when I was unable to even carry my equipment when I first got

>ill. I still can't tolerate light exercise, but can handle aerobic

>exercise using my placard to avoid light walking as much as possible.

>

>That doesn't mean I don't have some cognitive and weakness issues, but

>I have regained some abilities that I thought were long gone.

>

>One thing that seems to be a trend on this list is that recovery from

>crashes seems to be a combination of rest and the mito cocktail. Is

>that a correct assumption?

>

>I guess I just don't want people to give up hope based only on a

>potential or confirmed diagnosis of mitochondrial disease...

>

>Take care,

>RH

>

>

>

>

>

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>

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>

[Guest guest]

I've made some improvements in areas such as mobility without the

cocktail. I had too many GI problems with the cocktail so I

discontinued it. I did however, make many lifestyle adjustments. I

used to be a highly driven person who didn't get enough rest. I had a

poor diet and over-exercised to the point of muscle damage and

injuries. Once diagnosed, I re-evaluated many aspects of my life. I

now rest when I need to, my diet has been highly restrictive and

extremely healthy, and my exercise is constistent and moderate, not

excessive. All of these things combined helped to get me from walking

with a cane to jogging. I've also lost 80 lbs and I'm down to a

normal, healthy weight. I really believe that there are many things

one can do on there own to improve their health. Some aren't willing

to give up the bad diet, or to exercise daily etc..., but I swear by

the changes I've made. Don't get me wrong, I'm not healthy and I

still have problems, but things would be a lot worse if I didn't do

what I've done.

bug