Re: carbs and lactic acid/ need opinion

[Guest guest]

Good Morning,

As you already know I am relatively new to you list. I have not been

" diagnosed " with a name yet to what ever my " metabolic myopathy " is. What I do

know is that my blood pyruvate is way to low, my pyruvate kinase was within

normal limits, my CK's stay at around 350 but can spike to 2000 and maybe

higher but haven't caught them higher at this point. ( seems like I feel the

best when they are high and the pain and fatigue increase when they come down

and this I still don't understand) Not to long ago this new doc ( I have seen

about 6 so far....keep trying to find one who won't blow me off.)...anyway he

had me to a exercise stress test, actually it was more like a cardiac stress

test then did a lactic acid draw within 10 minutes of ending the test and he

said that it was 3-4 times higher than what it should have been. The told me to

eat light before I came....but since I wasn't hungry I really didn't eat at

all.. My appetite has sucked lately so I know that I haven't been eating as

well as I usually do, this has lead to a major reduction in carbs..ie no fruit,

I usually have a small frozen meal of some sort of pasta at work cause it's

quick, I haven't been eating my usual daily yogurt or salads....( I typically

eat only healthy stuff...I know BORING!!!!!!) Anyway, can anyone shed some

light on this for me? He is putting me on a ton a supplements and wants to see

me back in 2 months. You all have talked about the Atkins diet which I can''t

do...I have only one kidney due to a previous bout with kidney cancer and this

doc who is also a nephrologist said that I can't do all that protein. He siad

not to do any changes in my diet.....so I guess I have to cont to not eat more

or less for the next two months...hahaha and then he is going to recheck

everything! He said that I definitely have a problem but that I wasn't

presenting in a normal fashion...I had to luagh and siad well I don't do

anything normal........lol Any ideas? He thought that maybe as time progressed

more symptoms would pop up and they would find a name for whatever it is that I

have. I use to was 30 miles a week and now for the last 2 years I am unable to

do so. The debilitating fatigue I was experiencing is markedly less. My muscle

biopsy was " normal " last summer......If I do feel well enough to walk on the

treadmill now I " pay for days " . Any thoughts or comments would be greatly

appreciated. YOu knowledge and help is awesome!

have a good one

mary ann

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[Guest guest]

The Atkins diet thread is relatively recent, and not pervasive. But

I think many of us are frustrated with the " standard treatments " (the

mito cocktail) not quite giving us enough improvement, and linking

diet to a metabolic condition seems to be logical.

The only comment I could make regarding your dx is that my experience

was continually abnormal lactate/pyruvate ratios (lactate usually

normal, pyruvate very low), then eventually I got a fresh muscle

biopsy which confirmed mitochondrial disease.

There are many discussions on this list on " fresh " vs. " frozen "

muscle biopsies; did you see any of those? Maybe do an archives

search on the word " fresh " ...

Good luck!

Take care,

RH

>

> Good Morning,

> As you already know I am relatively new to you list. I have not

been " diagnosed " with a name yet to what ever my " metabolic myopathy "

is. What I do know is that my blood pyruvate is way to low, my

pyruvate kinase was within normal limits, my CK's stay at around 350

but can spike to 2000 and maybe higher but haven't caught them

higher at this point. ( seems like I feel the best when they are

high and the pain and fatigue increase when they come down and this I

still don't understand) Not to long ago this new doc ( I have seen

about 6 so far....keep trying to find one who won't blow me

off.)...anyway he had me to a exercise stress test, actually it was

more like a cardiac stress test then did a lactic acid draw within 10

minutes of ending the test and he said that it was 3-4 times higher

than what it should have been. The told me to eat light before I

came....but since I wasn't hungry I really didn't eat at all.. My

appetite has sucked lately so I know that I haven't been eating as

well as I usually do, this has lead to a major reduction in carbs..ie

no fruit, I usually have a small frozen meal of some sort of pasta at

work cause it's quick, I haven't been eating my usual daily yogurt or

salads....( I typically eat only healthy stuff...I know

BORING!!!!!!) Anyway, can anyone shed some light on this for me? He

is putting me on a ton a supplements and wants to see me back in 2

months. You all have talked about the Atkins diet which I can''t

do...I have only one kidney due to a previous bout with kidney cancer

and this doc who is also a nephrologist said that I can't do all that

protein. He siad not to do any changes in my diet.....so I guess I

have to cont to not eat more or less for the next two

months...hahaha and then he is going to recheck everything! He

said that I definitely have a problem but that I wasn't presenting in

a normal fashion...I had to luagh and siad well I don't do anything

normal........lol Any ideas? He thought that maybe as time

progressed more symptoms would pop up and they would find a name for

whatever it is that I have. I use to was 30 miles a week and now for

the last 2 years I am unable to do so. The debilitating fatigue I

was experiencing is markedly less. My muscle biopsy was " normal "

last summer......If I do feel well enough to walk on the treadmill

now I " pay for days " . Any thoughts or comments would be greatly

appreciated. YOu knowledge and help is awesome!

> have a good one

> mary ann

> ----------

>

> No virus found in this outgoing message.

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1/14/2005

>

>

>

[Guest guest]

In a message dated 1/15/2005 8:54:14 AM Eastern Standard Time,

makrn@... writes:

..)...anyway he had me to a exercise stress test, actually it was more like a

cardiac stress test then did a lactic acid draw within 10 minutes of ending

the test and he said that it was 3-4 times higher than what it should have

been.

Hi -Ann,

I had an exercise test done last year which showed a reduced anaerobic

threshold and my lactate increased 10 fold when comparing my before and after

levels. My pulmologist said that this is highly suggestive of a metabolic muscle

disease.

I had a fresh muscle biopsy that also came back negative, but so many of my

lab tests and my clinical history fit mitochondrial disease, that my mito

doctor strongly believes that this is what I have. If positive, muscle biopsies

are diagnostic for mito, but if they come back negative you can still have

mito, too. They are still learning so much about mito diseases that there is

probably much that still needs to be learned about diagnostic testing.

Malisa

[Guest guest]

Thanks Malisa I appreciate your response.

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