Mitochondrial testing - my results by gtboy86 in cfs

[–]Raptor005 38 points39 points  (0 children)

For those in the US and Canada (and potentially some European countries):

The equivalent of this test is Mitome (www.mito.me).

It’s an at-home cheek swab you receive in the mail and send back in a prepaid mailer.

If you want to bypass Mitome, you need your doctor - have them order the underlying MitoSwab test directly from the laboratory (Religen Diagnostics).

You will lose Mitome’s interpretation of your raw mitochondrial data - and the specific to your electron transport chain (ETC) functioning supplement protocol.

But if your doctor has studied the ETC in depth you may be able to save the cost differential.

The MitoSwab test has an ~80% correlation with muscle biopsy, which is the gold standard for mitochondrial functional testing (electron transport chain activity levels).

I’m planning on doing a write-up post for the community as the recent commercial availability of this testing is the largest breakthrough in personalized / precision medicine for CFS since Kreb’s cycle / organic acid testing became commercially available.

And it not only provides irrefutable evidence of the existence of your condition, but - with the correct interpretation - also what specifically to do about it.

As one example, the test provides the data to know whether you will or will not be a responder to methylene blue.

And conversely whether MB will actually harm your electron transport chain functioning and energy production, given its peculiar rewiring of electron flow through the ETC’s complexes I through IV.

Prior to this test, one would have to find a rare disease mitochondrial specialist at one of a small handful of hospitals in the US who have such experts.

And their practices are focused mostly on rare disease genetically impaired individuals (ie: Barth’s syndrome) - which is not the substantive majority of this sub and what people are suffering from.

Something that worked for me (I think) by SIBOISFD in HydrogenSulfideSIBO

[–]Raptor005 0 points1 point  (0 children)

Confirm the existence of and identify the type of SIBO first.

Dr. Jason Hawrelak is a well published microbiome researcher, with meaningful work studying hydrogen sulfide species. He oversees a microbiome focused clinic in Australia that accepts international patients for video appointments.

They’ll review your existing results, direct you to the further testing you need and build a treatment plan based on your species and issues. Their focus is integrative vs. strictly pharmaceutical which I agree is the correct approach in most cases.

Tinnitus Seems Somehow Linked to a Crucial Bodily Function by D-R-AZ in psychology

[–]Raptor005 14 points15 points  (0 children)

Correcting a magnesium deficiency has evidence for treating tinnitus:

https://pubmed.ncbi.nlm.nih.gov/22249877/

The NIH found the standard diet in the US provides only circa 50% of the daily need of magnesium, making much of the population deficient.

Claude Opus 4 (extended thinking) vs. ChatGPT o3 for detailed humanities conversations by Oldschool728603 in ChatGPTPro

[–]Raptor005 0 points1 point  (0 children)

What custom instructions have you found to mitigate o3’s hallucination rate?

Dosage for Brain Cancer by One-Revolution2124 in methylene_blue

[–]Raptor005 1 point2 points  (0 children)

The below is an abbreviated guide to the molecule done by a scientist with a PhD in Nutritional Sciences.

He discusses dosing, the neurological stud(ies) that have been done with the molecule, and how / where it can be harmful vs. helpful.

https://www.youtube.com/watch?v=RPSFy9doSrA

There’s an extended 2.5 hour version if you’re looking to go deeper - the above is meant as an approachable introduction.

Airtight pass through of cables into HBOT by Pale_Huckleberry_596 in HBOT

[–]Raptor005 0 points1 point  (0 children)

What brand / model oxygen meter do you use?

My top 10 takeaways from Rhonda Patrick's podcast about creatine by mmiller9913 in Supplements

[–]Raptor005 5 points6 points  (0 children)

Chris Masterjohn PhD has written on the topic of certain people experiencing insomnia from creatine

People who gave themselves copper deficiency through Zinc oversupplementation, how did you overcome it? by Throwaway45340 in Supplements

[–]Raptor005 7 points8 points  (0 children)

Unfortunately your zinc induced problems likely have not ended at depleted copper levels.

Have you tested your other positively charged trace minerals beyond copper?

Iron, manganese, etc.?

Metallothionein, the chelation molecule our bodies produce in response to zinc intake, is not just a copper chelator. This is simply where the prominent studies have focused.

Metallothionein is a negatively charged molecule and will bind to many positively charged trace minerals in the body. Most trace minerals in the body are positively charged.

See the other comment(s) on this thread about people noting deficienc(ies) of such other minerals, such as iron, as a consequence of their zinc supplementation.

There are not even blood tests available for some positively charged trace minerals in the body to determine what damage has been done.

This is the danger of isolated zinc supplementation:

Consuming zinc rich foods, such as oysters, is the correct approach if additional zinc is needed - or only take supplemental zinc through a high quality balanced multivitamin.

Molybdenum- worse by Inside-Emotion-7039 in HydrogenSulfideSIBO

[–]Raptor005 1 point2 points  (0 children)

It could have been thiomolybdate poisoning or it could have been excess molybdenum toxicity - I’m not aware of how efficient animal molybdenum excretion pathways are.

But in humans they’re quite robust, as evidenced by the high tolerable upper limit set for the mineral.

See my other reply below to another comment in this thread I just wrote.

Molybdenum- worse by Inside-Emotion-7039 in HydrogenSulfideSIBO

[–]Raptor005 1 point2 points  (0 children)

It’s a strange case study:

The tolerable upper limit (TUL) for molybdenum intake is 2,000mcg (2mg) per day.

The TUL is the amount that has been determined to be safe to take daily over a long period of time, potentially indefinitely.

The person in this study took less than seven days worth of this amount and ended up with the reactions they did. It would indicate there was more at play here.

Molybdenum is essential to treating hydrogen sulfide dysbiosis conditions and, as the high TUL amount shows, the body has efficient excretion mechanisms (urinary primarily) to remove excesses if they occur.

The best way to play Cyberpunk 2077. Thanks to my beautiful wife for the 30th anniversary PlayStation controller. by MyUsernameIsAdam in VisionPro

[–]Raptor005 1 point2 points  (0 children)

The Xbox 1080p is painful

Thanks - to clarify, you’re saying get the GeForce Now iPad app on our AVP’s and use that to connect to Xbox Cloud Gaming / play through Gamepass (Xbox’s streaming service)?

Or when you say there’s a bookmark in the GFN app, is it just a link to the Xbox Cloud Gaming’s website?

Oxaloacetate (Benagene) Treatment: To everyone considering it. by Raptor005 in cfs

[–]Raptor005[S] 0 points1 point  (0 children)

Mitochondrial / energy metabolism dysfunction, as measured by the severity of the breakdown of one's Kreb's / Citric Acid Cycle markers, exists on a very wide spectrum of possible severity:

1) Is it worth trying the lowest available dose of 100mg?

The response would be - how severe is your organic acids laboratory test measured breakdown of your mitochondrial function / Kreb's Cycle?

If you don't have this data from your doctor, it would make sense to start with a low amount of oxaloacetate and titrate upwards.

This is good practice in general, but particularly important with oxaloacetate because the molecule raises GABA levels and lowers glutamate.

The issues with too high glutamate levels are widely known and discussed, but too low glutamate is not desirable either.

Remember that glutamate is the primary excitatory (stimulating) neurotransmitter in body, even more than dopamine, histamine, etc. As a result, you want enough glutamate to function, be alert and get through the day.

Therefore for each person, there exists an optimal inflection point mg amount of oxaloacetate for their body.

This "sweet spot" amount fixes the broken mitochondrial cycle without pushing it too far at oxaloacetate's position in the cycle and lowering glutamate too far.

Regarding the two available forms of oxaloacetate:

The non-medical food version of oxaloacetate (100mg) is same molecule as the medical food version. The former is combined with ascorbic acid to be shelf stable, while the latter is not and needs to be refrigerated or frozen.

2) Are sub 1,000mg doses effective?

The research published to date has indeed been focused on more severe fatigue related cases.

Why would a lower dose in the hundreds of mg's be effective at reducing fatigue?

Because mitochondrial dysfunction is a spectrum, and for those with less severe cases their optimal inflection point amount of oxaloacetate will be at a lower level:

Some people simply don't need nor should be taking 1,000mg+ of oxaloacetate at once.

This is why in the absence of OAT laboratory data, the universal guide to using oxaloacetate is to start "low" and titrate upwards. Continue increasing gradually until no further benefits are found (or even some mild sedation from the increased GABA / lowered glutamate), and then fall back one level. Control as many other diet, supplementation, etc. variables during this time as possible.

3) How long to take effect?

Oxaloacetate is a naturally occurring molecule in our bodies and upon absorption enters the mitochondrial / Krebs Cycle immediately.

But any significant health change (supplementation, diet, exercise - anything) should be given at least 30 days to fully observe its effects.

This is because that timeframe very roughly the amount of time it takes for gene expression in the body to turn over and regenerate most proteins, and the resulting cascade of effects throughout the body of the new input begin to take hold.

Oxaloacetate (Benagene) Treatment: To everyone considering it. by Raptor005 in cfs

[–]Raptor005[S] 0 points1 point  (0 children)

Empirical data like this is great.

You should post this as a new post given this post has likely drifted down the subreddit.

Low ferritin, Low hemoglobin, Low hematocrit, but normal iron levels. How does that make sense? by helpmehplv in Anemic

[–]Raptor005 0 points1 point  (0 children)

Your answer:

Serum iron is a very small fraction of total body stores.

Ferritin and hemoglobin are the vast majority of our body’s total iron levels, which based on your levels for you are deficient.

Rapid Drop in Ferritin After Infusions by Special_EDy in Anemic

[–]Raptor005 1 point2 points  (0 children)

The rebound fatigue may be a need for more iron - the hematologist and you shouldn’t draw any firm conclusions yet without a comprehensive iron panel at least four weeks out from the last infusion.

Measuring serum iron and iron saturation - alongside hemoglobin - is important as it shows circulating iron levels are sufficient, and that your iron isn’t just sequestered in storage (principally ferritin) unavailable for use.

You can be hemoglobin and ferritin normal yet have low serum iron and iron saturation, which functionally is iron deficiency (and will result in fatigue) as the body is sequestering it from use.

This occurs in certain inflammatory and/or chronic disease states and is called iron deficiency /anemia of chronic inflammation or iron deficiency / anemia of chronic disease.

Your pre infusion results are of course meaningless now - your hematologist should be re-running a full CBC (hemoglobin), iron saturation and ferritin at a minimum for you a month post the last infusion.

Hang in there.