Re: Stopping in after long absence...

[Guest guest]

Thanks for sharing this. I will have to dig out my test results. My

values are almost all low - before any current suppliments. Some are

absent. I have been told by several docs that only the high values are

significant when dealing with mito. I have always thought that the low

values must mean something.

I'm glad the suppliments you are taking are helping you.

Good to hear from you.

laurie

> 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.

>

>

>

>

>

>

>

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>

[Guest guest]

Laurie,

The docs telling you only high levels of amino acids are significant

need to re-examine the current info on this. Some of the less critical

amino acids don't seem to be as important where there are low values

but for some of the so called essential ones low levels can be severe.

There are a few serious even fatal conditions that occur in the very

young with deficiencies of certain amino acids. You can actually buy

quite a few amino acids as supplements without a prescription.

Hope this helps!