Stopping in after long absence...

[Guest guest]

Hi Everyone,

I just wanted to tell the group a bit about my own recent progress.

I have Madelungs disease which is often associated with MERFF/MELAS

but sometimes associated with other mito and/or other genetic things.

Some time back I had a muscle biopsy. I am going to have to have

another one as soon as my primary doctor and cardiologist clear me

for surgery because there wasn't enough muscle tissue to complete

all testing. I still need the mito mutation series run. My amino

acid profile overall was on the lower side and a few of the amino

acids were actually flagged as low values (i.e. most values were at

the very lowest end of normal which is an abnormality in itself and

then three amino acids were flagged low as individual values) Anyway

two of the ones flagged low were Taurine and Ornithine which

multiple references suggested were very important. I began

supplementing them a month ago and have noticed big and rapid

improvements including (okay these aren't medically the most

important but I was delighted that my finger and toe nails which

broke easily for years were finally long and healthy and that my

hair which has acted for years like it was " missing something " no

longer is!

I have tumors everywhere and some of them have gotten noticably

smaller and my edema is greatly improved.

I encourage everyone to get copies of any results when genetic

testing is done as a lot of this you can manage with supplements and

my doctors really didn't pick up on the fact that they were supposed

to DO anything with the amino acids, till after I told them I had

started on the supplements. Evidently most docs out of school a

while may not be that up on maximizing what they can do for some of

us.

That's it from me for now! The best to everyone.