• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

MitoSwab mitochondrial function testing

ebethc

Senior Member
Messages
1,901
If superoxide dismutase is inadequate and NO is present, there is an instantaneous reaction to peroxynitrites, which impair function of mito complexes, creating a vicious cycle, as well as damaging mitochondrial membranes, causing leakage, and lessening the energy potential.

how do you increase SOD?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
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.



IMG_20200507_104113.jpg


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.

how do you increase SOD?
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?
 

ebethc

Senior Member
Messages
1,901
@Learner1

this seems like a great test... one that every CFSer should have... my doc tries to be helpful, but is adamant about only using tests w a lot of evidence... So, I always need to know if a test has strong/medium/weak evidence to justify to her..

I found this, which was interesting, b/c it's pretty much what I'm doing now! I have done something similar in the past, but timing + supplements formulations & brands & combinations are everything, so we'll see... Oddly, I tried Ubiquinol w PQQ before and sent it back to amzn... now I'm using nature's bounty coq10 and it seems better.

I've done some things on the SOD list, most don't work, but zinc is great for me... we'll see w the current mito stuff I'm doing now, then I can revisit SOD..
 

ebethc

Senior Member
Messages
1,901

thanks!

do you know if you can get this test w/o a doctor's signoff? If it's $400, maybe I can find a way to get it myself and just pay out of pocket
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You'll need a doctor's order. Doing the test is simple - 4 long cotton swabs, rotate each of 2 inside left and right cheeks, snap off long stick, put in small envelope and mail. Results take 3-4 weeks.
 

Gingergrrl

Senior Member
Messages
16,171
You'll need a doctor's order. Doing the test is simple - 4 long cotton swabs, rotate each of 2 inside left and right cheeks, snap off long stick, put in small envelope and mail. Results take 3-4 weeks.

This is an old thread (that I turns out I posted in several years ago :headslap:) but I was wondering if the MitoSwab testing that you did was a kit by "Religen"? If so, do you remember how much it cost, or if your insurance approved it? Also, did you ultimately find the results to be useful in a direct practical way in your medical care? I am debating doing this test (MitoSwab by Religen) and am in the process of getting some more info.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
This is an old thread (that I turns out I posted in several years ago :headslap:) but I was wondering if the MitoSwab testing that you did was a kit by "Religen"? If so, do you remember how much it cost, or if your insurance approved it? Also, did you ultimately find the results to be useful in a direct practical way in your medical care? I am debating doing this test (MitoSwab by Religen) and am in the process of getting some more info.
Yes, it's the same one. No,my insurance didn't cover it. It was about $350.

I did the test three times. I used Martin Pall's protocol, and Seyfried, Nicolson and D'Agostino's mitochondria correction protocol along with a HDRI nitro tyrosine test to look for peroxynitrites and a Genova Diagnostics NutrEval (The replacement test for this is Metabolomics+) to monitor progress.

From the first test to the third test two years later I was able to gain significant improvements in my labs, this test, am I overall function. It was definitely very helpful for me, but because I was using the nutritional testing and understood the attached papers.

The one problem I run into I was in taking it to conventional mito doctors, they only seem to know how to look for genetic mito diseases and treat those and have been pretty unhelpful in this area. But I have found excellent functional medicine doctors who have helped me with this, and this strategy has greatly helped me.
 

Attachments

  • Pall ONOO cure.pdf
    114.5 KB · Views: 25
  • Mitochondrial_Correction Dagostino Seyfried Riordan Nicolson.pdf
    421.7 KB · Views: 32

Gingergrrl

Senior Member
Messages
16,171
Yes, it's the same one. No,my insurance didn't cover it. It was about $350.

Thank you for all of this info and I appreciate it. I have the MitoSwab kit but am going to hold off on it for now b/c of the cost and b/c there are other issues that I am working on right now that are higher priority. But I am planning to read more about it for the future.