ATP test: 99,2%

[Martin aka paused||M.E.]

Hi guys,
I'm severe and very Los in energy. Now I let my mitochondria checked by lab4more in Munich: the outcome is that my mitochondria works fine and I have an ATP 99,2% and there is no sign of a mi to dysfunction.

How is that possible?

Also there are no signs of inflammation, no sign of immune activation but under stimulation I get a TH2 shift

I get PEM, I'm very severe.

??????

 

[andyguitar]

and there is no sign of a mi to dysfunction.

How is that possible?

The simple answer @Martin aka paused||M.E. is that, if the tests are correct, you dont have a disease that is caused by lack of energy production. Nor is there anything wrong with mito's.

 

[Martin aka paused||M.E.]

So I have a completely other disease that probably no one knows and studies

 

[Hip]

I'm severe and very Los in energy. Now I let my mitochondria checked by lab4more in Munich: the outcome is that my mitochondria works fine and I have an ATP 99,2% and there is no sign of a mi to dysfunction.

It's only a theory that ME/CFS patient may have energy metabolism dysfunction. It is not proven.

And even if there were an energy metabolism dysfunction in ME/CFS, the lab4more ATP lab test you took may not be able to detect it.

There is not yet any energy metabolism lab test which can distinguish ME/CFS patients from healthy controls. The Acumen Lab ATP Profiles test claims to differentiate, but a recent study was not able to replicate their results, so a question mark now hangs over that test.

 

[Martin aka paused||M.E.]

It's only a theory that ME/CFS patient may have energy metabolism dysfunction. It is not proven.

And even if there were an energy metabolism dysfunction in ME/CFS, the lab4more ATP lab test you took may not be able to detect it.

There is not yet any energy metabolism lab test which can distinguish ME/CFS patients from healthy controls. The Acumen Lab ATP Profiles test claims to differentiate, but a recent study was not able to replicate their results, so a question mark now hangs over that test.

They measured the ATP level in %T cells ... that doesn’t sound like they measured ATP itself and furthermore it doesn’t sound like intracellular ATP. Does that makes any sense @Hip

 

[Hip]

They measured the ATP level in %T cells ... that doesn’t sound like they measured ATP itself and furthermore it doesn’t sound like intracellular ATP. Does that makes any sense @Hip

I'd have to read about the lab4more test to understand it more.

I know a bit about the Acumen Lab ATP Profiles test (I detailed it in this long post), which measures 5 parameters related to mitochondrial energy metabolism, including the amount of ATP inside cells.

 

[Pearshaped]

My labwork was sent to a mito -and metabolic disease specialist a while ago,
he was utterly convinced that my mitos themselves are fine.
But strongly suspected a pathogen.
(If I remember his name I will post it)


Nothing was found.
I know how you feel..
hang in there Martin

 

[Countrygirl]

I have just been discussing this over this weekend with an infectious disease consultant and ME specialist who runs a clinic from my home in SW England every couple of months, and he is convinced that mito dysfunction is a major factor in this disease. He also believes that an endogenous retrovirus is involved and has some success with a few people in a small anti-retroviral trial. (He is not currently using A/Rs, before you ask!! However, if you would like to see the best adult specialist ............perhaps the only experienced adult ME specialist in the UK............ then you need to get in touch with me. He charges half his usual fee if you see him in my home for an hour to sometimes nearly two hours, depending on need. Patients lie down on a couch during the appointment, if you are worried about sitting up. I am also collecting the names of children for the well-known paediatrician who will also see patients at my home.....................and sorry to take your thread off course @Martin aka paused||M.E. )

 

[Rufous McKinney]

My labwork was sent to a mito -and metabolic disease specialist a while ago,
he was utterly convinced that my mitos themselves are fine.

We were just discussing in another thread the recent discovery of free mitochondria in the bloodstream that nobody knew were there. Were those mitochondria examined by these tests? Seems like its possible for- some specific tissue or feature to produce- something that isn't turning up in these tests. You can't find what your not looking for.

 

[Wishful]

How is that possible?

It's just that there's no proven theory that ME is caused by general mitochondrial dysfunction. Maybe there's mito dysfunction in a specific area of the brain, or maybe mito dysfunction is a secondary disorder that some people with ME get. I'm convinced that a blood test for mito function would show that mine are working fine. Various things that should affect mito function do make my ME worse, so maybe my ME involves a sensitivity to deviations from normal mito function caused by other factors.

Also, some people here report some benefits, typically minor, from treatments supposed to boost mito function, and some people report no benefits. To me that says that trying to treat mito function isn't a magic bullet, guaranteed to reduce your symptoms.

I don't know of any tests that will provide a prescription with a greater chance of working for ME than just trying treatments (herbs, drugs) more or less at random.

 

[Rufous McKinney]

Maybe there's mito dysfunction in a specific area of the brain, or maybe mito dysfunction is a secondary disorder that some people with ME get. I'm convinced that a blood test for mito function would show that mine are working fine.

Ignoring the chicken or egg coming first question.... I suspect- the wrong instructions are being sent out of an inflammed and now probably collapsing lower brain stem.

example- heart rate variability. Once I understood which variabilty we were discussing....so healthy people exhibit a variability that disappears in sicker people. Instructions are off. Its neurological, maybe...but I also understand that hormones and other chemicals are also- sending instructions.

Genetic predisposition X virus or critter X other factors X gradually all the message get more and more wrong.

So I"ve pondered a bunch of symptoms that Got Way Worse when I was acutely bad- but I've managed to get them to go away mostly- by doing almost nothing for 5 straight months. No lunch, no trip, on chat, no shop, no clean.

When I was- pushing to keep up with 5% of what my daughter and her family were up to for three long months...I had arrthymias....bouts... and falling overs.....and unable to hold a towel....or respond to outside stimulus by- moving out of the way of oncoming objects. Really extreme- sudden onset I want to END this now. Can't look out of my eyeballs at the outside scenery, cannot keep my eyes open in a moving car. Cannot sit up in this chair.

And sometimes when the above is happening- it just sure feels like I just abruptly ran out of ATP, and the body has simply no way to- do ANYTHING....breathing is- hard.

 

[Martin aka paused||M.E.]

Ignoring the chicken or egg coming first question.... I suspect- the wrong instructions are being sent out of an inflammed and now probably collapsing lower brain stem.

example- heart rate variability. Once I understood which variabilty we were discussing....so healthy people exhibit a variability that disappears in sicker people. Instructions are off. Its neurological, maybe...but I also understand that hormones and other chemicals are also- sending instructions.

Genetic predisposition X virus or critter X other factors X gradually all the message get more and more wrong.

So I"ve pondered a bunch of symptoms that Got Way Worse when I was acutely bad- but I've managed to get them to go away mostly- by doing almost nothing for 5 straight months. No lunch, no trip, on chat, no shop, no clean.

When I was- pushing to keep up with 5% of what my daughter and her family were up to for three long months...I had arrthymias....bouts... and falling overs.....and unable to hold a towel....or respond to outside stimulus by- moving out of the way of oncoming objects. Really extreme- sudden onset I want to END this now. Can't look out of my eyeballs at the outside scenery, cannot keep my eyes open in a moving car. Cannot sit up in this chair.

And sometimes when the above is happening- it just sure feels like I just abruptly ran out of ATP, and the body has simply no way to- do ANYTHING....breathing is- hard.

Yes it takes weeks up to months to get better and nanoseconds to get worse. Even if my ATP was right and in check, my metabolon results (they unfortunately only test for metabolic in the blood) shows that there can't be everything right with metabolism. And that's the mitochondrial thing: I googled yesterday for getting an answer it the answer was: there is no reliable commercial test to test the functionality of the mitochondria.

 

[Rufous McKinney]

I googled yesterday for getting an answer it the answer was: there is no reliable commercial test to test the functionality of the mitochondria.

and isn't that rather amazing?

 

[ljimbo423]

and isn't that rather amazing?

I don't know if they've run mito tests on the severely ill. If they did, it should show their mitochondria WAY out of whack and producing almost no ATP at all. Given their complete and constant inability to even get out of bed. If mito dysfunction was the major cause of symptoms.

I think the brain is causing most of the symptoms, from immune activation in the body. Basically Jarred Youngers' hypothesis. Most of the supplements I benefit from that have an affect on my mito., also affect the brain.

 

[Wishful]

and isn't that rather amazing?

Someone needs to see the profits possible with a device/app that monitors mitochondrial function, so that people can brag about their levels on social media.

 

[Wishful]

I don't know if they've run mito tests on the severely ill. If they did, it should show their mitochondria WAY out of whack and producing almost no ATP at all.

I'm not sure that's guaranteed to be true. I think it's possible that those completely bedridden PWME might have relatively normal levels of ATP, but there's a problem between thinking about moving muscles and actually getting them to contract properly. There are psychological forms of this, but I'm thinking more along the lines of partial dysfunction of neurons, which interferes with proper communications between brain and muscles.

I wonder if any studies have checked the strength of nerve signals in those severe patients.

 

[Martin aka paused||M.E.]

I'm not sure that's guaranteed to be true. I think it's possible that those completely bedridden PWME might have relatively normal levels of ATP, but there's a problem between thinking about moving muscles and actually getting them to contract properly. There are psychological forms of this, but I'm thinking more along the lines of partial dysfunction of neurons, which interferes with proper communications between brain and muscles.

I wonder if any studies have checked the strength of nerve signals in those severe patients.

I did a Metabolon test and it showed a highly disturbed metabolism. There are more severe cases with normal ATP. Unfortunately it’s nearly impossible during Corona to send blood to Stanford.
Ativan helps me just like it helps Whitney. I don’t think ATP is our main problem. I think it’s the interaction of the whole system and far more complex than our knowledge at the moment can explain.

 

[wigglethemouse]

@Martin aka paused||M.E. Do you know if they activated your cells to measure ATP? Several studies have shown no difference at rest, but a group difference when put to work - Stanford, Cornell, Newcastle, LaTrobe I believe I've heard mentioned.

A while back I did go through the Agilent Seahorse website and found a recipe for testing T-Cells which includes activation of the T-cells..........

 

[Martin aka paused||M.E.]

Metabolon only tests for extra cellular metabolites.
but yes, this activation test on T-cells was were I had 99,2%...

 

[YippeeKi YOW !!]

and isn't that rather amazing?

Not really, when you consider the extremely wide net that mitochondrial diseases cast, affecting endless different organ systems and tissues.

Add to that the even wider range of different symptoms with which each patient presents, and it turns into a complex game of medical 5-dimensional chess that no single diagnostic test could effectively diagnose. Or possibly even isolate.

Add to that the variety of different potential causes for mitochondrial disorders (genetic or epigenetic mutations in mtDNA), the possible negative intervention of adverse effects of everything from the drugs that Drs are so quick to push at ME patients to the already-known effects of viral infections like EBV, or even reactions to crap in the environment like organophosphates and termiticides, and whatever cities and states use to produce "drinkable" tap water, and it's not hard to see that creating an effective miito tst, or even an effective series of mito tests, is a long, rough road.

Probably longer now that research is laser-focused on COVID, and the once-promising Myhill test has been in question since sometime last year .... ....