is this a test that is generally recognized? ie, a lot of robust evidence
what kind of doctor evaluates mitochondrial disease?
thx
It is used at Children's Hospital of Philadelphia to evaluate children with mito disorders. The idea is to use it as I have - do it, make interventions and then test to see if they worked.
These are my results over time. I did 3 tests, on the dates at the top. Looking down, the second line has mitochondrial content, which is a problem for me - slightly less than half normal. Not sure if this is due to fragmentation, my chemotherapy and Cipro history, or what. It went up on the second test, but I was deficient of asparagine, which is critical for the die-off of fat sloppy old mitochondria, and when I brought that up, my content returned to its baseline.
The classic pattern for ME/CFS is low complex I function, and high complex IV, which you can see I had. The interventions I've made have brought my complex I function to normal - complex I is impaired in many serious diseases and can be brought on by peroxynitrites, which impair it. A lot of work I've done was to reduce peroxynitrites, which my testing said I improved over the same period of time, through doing HDRI nitrotyrosine tests, and using Martin Pall's protocol of folate, B12, and C (and recently BH4).
I was told that complex IV is high to compensate for underperformance elsewhere. I'm investigating to try to figure out why it's still so high - I believe I've had the 2 highest values of anyone they've ever measured.
My complex II was hyperactive, too and we believe this was throwing off excessive free radicals, so lowering it to normal is good, though I'm not sure what 2/3 of normal means. I'm also not sure why they measure II and III together, but they do. And, those are about normal. So, I think you can see why I'm a fan of the test...
So, I'm still left with why my content is so low and my complex IV is so high. My labs are saying I have below range pyruvate (and lactate - but I do some things to lower lactate) and I have a significant fatty acid oxidation problem that's shown up on OAT and NutrEval tests, as well as in recent metabolic testing (treadmill testing like a CPET, but measuring metabolites coming out of me during it).
So, I haven't fully resolved my mito issues, nor am I 100% sure they're fixable. I might have too much damage from the drugs. But, I am investigating how to optimize what I have, and plan to continue NT Factor, which has been a big part of it. I also think the oxidative stress I have isn't helping, and if my mitos are fragmenting, and that's why I have a content problem, maybe unstressing them will let them get back to more normal.
I'm not sure this test is widely recognized, but my conventional doctors have taken it seriously. They can read mito content, and mito function for complex I-IV and they can grasp that the %iles aren't normal. The notes on the test say it's about 85% correlated with a muscle biopsy but far less invasive and easier to do, especially repeatedly. The doctors now do realize I have a mito problem and factor it in. I suppose it will help me avoid mito-damaging drugs they want to prescribe (like propofol,for a colonoscopy...) and get me referrals to mito specialists, of which there are maybe two dozen in the US... I don't hold out much hope for any help there, but continue to work with my naturopath on strategies.
That's a good question. I"m looking into it, but am already doing a few things on the list here, like carnitine, curcumin, glycine, Huperzine A (ups acetylcholine), manganese, NAD+, zinc. On the minus side, I take MitoQ and folate:
https://selfhacked.com/blog/the-brain-fog-gene-rs4880-or-sod2/
Let me know if you find any new insights, eh?