non-invasive test for Mitochondrial myopathy!

[David Staup]

from the mito group forum:

Dear Friends,
Many of you have either posted or read posts about
that big question..Do you or a family member actually have Mito or is it
something else, or a combination.

Then there is the problem of getting an appointment for a biopsy, which has it's
own sub-set of problems,
like will it be a fresh sample or a frozen sample and on that issue alone, there
are differing opinions from different doctors.

Then there is the question of the lab and the dreaded report, inconclusive, or
"If it were fresh rather than frozen, maybe I could have known better". Or ,one
lab is better than the other, but your doctor's hospital has a contract with a
local lab, locking your sample away from the more respected lab that understands
Mito.
We have read some of all the above situations and more, many times.

We and our doctors are all pretty comfortable with the simple labs that go out
to a local lab and most are hard to really mess up, except maybe what is your
coQ10 level, that one many labs don't get right.

But if your really big question is, do you or a family member actually have Mito
and you are looking for an answer which does not depend on how good the person
is at interpreting what the mitochondria should look like in the lab ( beside
the DNA /mtDNA sequencing done by machine) and the time delay, if they are a
good lab.

Well, it turns out that there is another tool we don't hear much about but it is
related to one we do hear much about, the MRI.
Since at least the 80's, there have been studies done and they got better at it,
for detecting Mito.

When you are measuring for Mito, first you see what the resting state level is
for ATP and compare that to what the existing resting state is also for ADP.
When ATP is used, the available energy is taken off ATP by striping off one
molecule and the stripped off version, minus some energy, is now ADP. The 'T'
stands for 'Tri' and the 'D' stands for 'Di'.

So, if you know how much ATP and ADP are present while at rest, then you do a
little work and get a second reading, If the ATP is low and the ADP is high, you
know the mitochondria are not recycling your ADP into ATP
and more, you have actual numbers in percentage, what is normal, what you are
producing and where you stand in results compared to normal averages.
Just like most lab results. Hard data, real numbers, no opinion or no wrong
opinion.
And you can read it compared to normal numbers.

Well, that technology is called
"phosphorus magnetic resonance spectroscopy" and if you google that term, with
the quotes, you will get a lot of results and some great reading, good papers,
done about people like yourself.

First, you can get the scan while keeping your muscle right where it is and
without getting a chunk of you cut away. Later, if the numbers come back to show
you are not making much ATP from all the surplus ADP like you should, then yes,
very likely it is a mito issue, so you can go further, get the biopsy and get
the DNA done so you know which complex.

But if your question is mainly do you have Mito, this method may be worth
knowing about.
I like the idea of knowing and having a number put on it, of what percentage ATP
before working to what percentage ATP after working, did I make? You should keep
up while working.
In this re-cycling ADP to ATP process, you should be making about your body
weight in ATP a day..Granted it's a closed loop system but that goes to show you
how much of the stuff is used to live and work.

Understanding how the machine works is easy if you look at it this way. Each
material has a different signature, like a bunch of bells of different size,
each has it's own sound.
As you strike each bell, it sounds out with a unique signature.

In the machine, fields are like the bell striker. Each shows up in it's own
place on a graph or chart.
So, it's all about numbers and is not subject to human error, it's a spectra
showing what is there and how much of each.
So, first a baseline reading, then some work, then another reading.

Some studies were on Mito patients from the same family and really conclusive,
with detailed numbers.
All without cutting.
Some were on heart patients, without cutting, to see how much ATP vs ADP was
present, because many did not show problems with EKG but had pains.

The machine can spot ATP to ADP ratios before / after workout so much earlier,
it can tell you about the issue before even having Mito symptoms. I would call
that quite a value.
Instead of having to wait before it looks like it's needed, you can know really
early on.
Most docs would not order a biopsy without strong suspicion.

Plus the machine can look where you want, not just where the chunk of muscle was
cut away.
What if the biopsy was not the most effected area? What good are the results?

Most of these machines are at universities and like it's cousin, the MRI, they
use magnetic fields in the 1.5 Tesla to 3 Tesla range magnetic field strength.
Unlike other scan systems, there is not a radiation problem.
I'll take a magnetic resonance scan any day of the week compared to the other
type scans


"http://www.ncbi.nlm.nih.gov/pubmed/4037759

full text:

http://www.ncbi.nlm.nih.gov/pmc/article ... 2-0048.pdf

David

[Biologist]

So far I have been able to resist the temptation to post, since as I mentioned recently, I am and will remain very busy with other matters for many months. But this thread pushed me over the "resistance threshold," David.

Excellent find!

One of the reasons it is such a good find is because it shows there now exists (apparently) an objective means of evaluating TREATMENTS for improving the function of mitochondria. That's something that has not existed in the past, to my knowledge.

Dr. Graveline and I have both mentioned the potential of thyroid hormone-oriented therapy as a promising avenue for improving function of mitos via increasing a tissue's population of sound/healthy mitos versus dysfunctional ones through selective growth and replication of the good ones as "inspired" by appropriate thyroid hormone supplementation. (This might be done in concert with other protocols at the time such a monitoring / controlling antioxidant levels -- the theory of which is based on long-known fundamental mammalian biochemistry.)

Such an objective before and after test would demonstrate whether or not it worked. The same would be true for potential Methylene Blue (MB) therapies as Brian wrote about months ago. The Subjectivity Factor for subtle change would be removed from the equation. That is major!

For those who are unaware, and have time on their hands, you can probably find out more about MB here:

*http://www.google.com/search?hl=en&source=hp&q=methylene+blue+mitochondria&aq=0sx&oq=methyline+blue+mit&aqi=g-sx1

I read your post of your positive findings for ATP supplementation. Very encouraging. Thanks for your continued efforts.

(You too, Jeff/xrn -- I liked reading your paper recently.)

Biologist
_____________

PS. For those with GIRD, better read this post quick to get some free treatment (I would but my need for Tums evaporated completely after quiting Satins):

*http://www.proteinpower.com/drmike/supplements/protexid-and-protexid-nd-and-adventures-in-dr/

Here's a quote at the end:

"Anyone who wants to try this product can get it absolutely free by ordering on our website. The price should be set at $0. All you will have to pay is the shipping and handling, which is minimal. Please, though, no more than two per person. That’s TWO per person. It can be one of each or two of one kind, but not two of both kinds. I want to make sure that everyone who wants to try Protexid gets a chance, and there really is a limited amount left. No obligations on your part. You don’t have to sign up for more. Just grab it and run. So, if you or someone you know has the problem, give it a try."


While you are there, check out these two recent pieces:

*http://www.proteinpower.com/drmike/cardiovascular-disease/the-statinator-paradox/

*http://www.proteinpower.com/drmike/cardiovascular-disease/statinators-spill-the-beans/

Hey, Brian. Thanks for directing my attention to this website over a year ago. It is standard reading for me now. I agree with 90% of what he writes and 110% of what he writes on Statins (aka Satins).

Hey, DEB, I hope things are going OK with you. Something you may want to try is the supplement "Huperzine A." It is pretty cheap and is said by some neurologist to impede the uptake of acetylcholine in nerve junctions just as SSRIs do for serotonin. I do not know if it works for me or not as I have not quit using it long enough to find out if there is a difference. May be worth a try for you, Dr. Graveline and others with ALS or ALS-like symptoms.

OK, back to work...

[Biologist]

*http://en.wikipedia.org/wiki/Huperzine_A

NOW back to work...

Biologist

[David Staup]

Biologist'

I agree with you assessment...this could be an extremely important advance for our cause.. for diagnosis and as a quantifiable test of treatments for many of the symptoms...I am going to try to find a neurologist locally who might test the ATP supplimentation using this test but doubt I'll be successfull.

I hope someone who is still covered by insurance and in the diagnosis stage will take this to his doctor and get some results for us. couple this with the following on myopathy without elevated CK and no doctor (honorable) should pass.

http://www.mitochondrial.net/showabstra ... l+myopathy

and

http://www.ukmicentral.nhs.uk/headline/ ... ewsID=7699

I am sorry about pushing you over the edge but well this one could be a mythbuster ie RARE side effect



David