Learner1
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A few weeks ago, I’d mentioned that I was doing some mitochondrial testing and would post when I had gone through the process successfully with the company, named MitoSwab. They have a cheek swab kit, that they have published results showing an 84% correlation with muscle biopsy, and a lot cheaper ($300) and less invasive. @BeautifulDay checked it out and she thought it might be a very useful test. It can be used iteratively, making interventions, then retesting to optimize function.
It took a while, as when I first talked with them, they were only testing complexes I and II. My reasoning for doing it was that I have had issues with very low/no succinate in my Krebs cycle, and I have been short of riboflavin. Both of these are used in complex II.
I also feel a muscle drain during exercise, either while attempting aerobic exercise or if I have a long period of being active (for me). Napping allows me to recharge, so it’s seemed like an energy problem. Tests have consistently found very high levels of oxidative stress... low glutathione,alpha lipoid acid, and vitamins A, C, and E, but my CoQ10 runs a little high and doesn’t seem to get used up.
I asked if they had ever done complexes II and III, and they said no, but they agreed to try it on me. I became their very first patient to get the full report. @Jesse2233 was the second and he posted about his experience in his thread. His results were easier than mine to digest.
http://forums.phoenixrising.me/inde...t-and-photopheresis.50260/page-18#post-972924
Part of the reason that getting my results took so long was that my results were more bizarre than they expected. They expected to see low complex I and high complex IV as they’ve seen in other ME/CFS and autistic patients.
The first surprise was that I have low mitochondrial content, which is not good. This is calculated from citrate synthase.
The second was that complex II was almost 400% of normal, which would generate a huge amount of free radicals. They did II and III together, and they were almost 200% of normal, again showing huge oxidative stress.
And my results for complex I were less than 50% of normal, while complex IV was again almost 400% of normal.
My results for Phase II are typical of cancer patients, and I was treated for cancer 3 1/2 years ago. The drugs I was on are known to impact complexes I and II. But this type of oxidative stress can combine with NO in the absence of enough superoxide dismutase, to impair mitochondrial function and damage membranes, and lead to future cancers, which I’d like to avoid.
And low complex I has been associated with neurodegenerative diseases, sepsis, and many other illnesses of aging.
So, it’s taken me awhile to digest my results, and I am looking at what I can do. On the one hand, I’ve already been doing many of the things I can to attack this, and my labs and function are better than a year ago, but it’s obviously not enough.
And, there are only a small handful of specialists in the US, most of whom seem to be treating children with primary (genetic) vs. secondary (acquired) mitochondrial disease, so it’s difficult to get help. I have the antibodies that Alan Light found in many patients, finding various mitochondrial mutations in virtually all of them. So, it could be that I have both primary and secondary mito disease.
So, it was a valuable test for me, and I would highly recommend it to others, with the caveat that once you do it, you will need someone who understands mitochondria and metabolomics to help you. Having my Genova Diagnostics NutrEval test results plus the MitoSwab results together lets us correlate the oxidative stress piece, but there are a couple of other tests that will be helpful in figuring out what’s going on, primarily looking at the NO/ONOO- and BH4 dynamics. And then, coming up with a more refined cocktail of injectible and oral supplements will be needed to optimize my function, as there aren’t any FDA approved drugs for mitochondrial disease, it’s typically nutrients to feed the biochemistry.
But though I got bad, even scary, news, this is a promising area, and one that I believe many of us can benefit in finding answers.
It took a while, as when I first talked with them, they were only testing complexes I and II. My reasoning for doing it was that I have had issues with very low/no succinate in my Krebs cycle, and I have been short of riboflavin. Both of these are used in complex II.
I also feel a muscle drain during exercise, either while attempting aerobic exercise or if I have a long period of being active (for me). Napping allows me to recharge, so it’s seemed like an energy problem. Tests have consistently found very high levels of oxidative stress... low glutathione,alpha lipoid acid, and vitamins A, C, and E, but my CoQ10 runs a little high and doesn’t seem to get used up.
I asked if they had ever done complexes II and III, and they said no, but they agreed to try it on me. I became their very first patient to get the full report. @Jesse2233 was the second and he posted about his experience in his thread. His results were easier than mine to digest.
http://forums.phoenixrising.me/inde...t-and-photopheresis.50260/page-18#post-972924
Part of the reason that getting my results took so long was that my results were more bizarre than they expected. They expected to see low complex I and high complex IV as they’ve seen in other ME/CFS and autistic patients.
The first surprise was that I have low mitochondrial content, which is not good. This is calculated from citrate synthase.
The second was that complex II was almost 400% of normal, which would generate a huge amount of free radicals. They did II and III together, and they were almost 200% of normal, again showing huge oxidative stress.
And my results for complex I were less than 50% of normal, while complex IV was again almost 400% of normal.
My results for Phase II are typical of cancer patients, and I was treated for cancer 3 1/2 years ago. The drugs I was on are known to impact complexes I and II. But this type of oxidative stress can combine with NO in the absence of enough superoxide dismutase, to impair mitochondrial function and damage membranes, and lead to future cancers, which I’d like to avoid.
And low complex I has been associated with neurodegenerative diseases, sepsis, and many other illnesses of aging.
So, it’s taken me awhile to digest my results, and I am looking at what I can do. On the one hand, I’ve already been doing many of the things I can to attack this, and my labs and function are better than a year ago, but it’s obviously not enough.
And, there are only a small handful of specialists in the US, most of whom seem to be treating children with primary (genetic) vs. secondary (acquired) mitochondrial disease, so it’s difficult to get help. I have the antibodies that Alan Light found in many patients, finding various mitochondrial mutations in virtually all of them. So, it could be that I have both primary and secondary mito disease.
So, it was a valuable test for me, and I would highly recommend it to others, with the caveat that once you do it, you will need someone who understands mitochondria and metabolomics to help you. Having my Genova Diagnostics NutrEval test results plus the MitoSwab results together lets us correlate the oxidative stress piece, but there are a couple of other tests that will be helpful in figuring out what’s going on, primarily looking at the NO/ONOO- and BH4 dynamics. And then, coming up with a more refined cocktail of injectible and oral supplements will be needed to optimize my function, as there aren’t any FDA approved drugs for mitochondrial disease, it’s typically nutrients to feed the biochemistry.
But though I got bad, even scary, news, this is a promising area, and one that I believe many of us can benefit in finding answers.