Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

godlovesatrier

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Personally I think the cdr theory whilst appearing a bit far fetched could be a better root cause analysis. Whilst the viruses might be able to be put under control if the body is still not right and the anti virals don't help the cdr issue heal. Then the cdr problem would still be there after the anti viral administration. Also it depends if people are dealing with chronic infection that requires treatment or an immune system that is constantly having to over work to dampen reactivation of dormant viruses.

Even so after reading about cdr, assuming the theory isn't a load of crap and the treatments posited do actually work for ME. Then that might be the missing piece required to get the body in a consistent state or a cured state. As opposed to "a lot better but not 100%". Whilst I feel a lot better feeding my mitochondria and this often stops a crash dead in it's tracks. It doesn't cure me and nor would I think others if the underlying cause is not identified and resolved.
 

Learner1

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Even so after reading about cdr, assuming the theory isn't a load of crap and the treatments posited do actually work for ME. Then that might be the missing piece required to get the body in a consistent state or a cured state. As opposed to "a lot better but not 100%". Whilst I feel a lot better feeding my mitochondria and this often stops a crash dead in it's tracks. It doesn't cure me and nor would I think others if the underlying cause is not identified and resolved
There are a lot of people who believe in the theory. I first heard about Naviaux and CDR at Ben Lynch's SHEI conference, then heard him speak at the 2016 United Mitochondrial Disease Foundation Conference and then at the Stanford ME/CFS Symposium, where I recognized him before he spoke and was able to have a lengthy conversation with him about mTOR and this diagram from his CDR paper.

Screenshot_20200428-073234.png

I told him what I was doing with my naturopathic/functional medicine care, which involved many of the columns in his chart. He very much approved and said that the key was to bring the body out of winter metabolism into summer metabolism after removing the cell dangers. That inspired me to do the n=1 experimenting I've done.

If my case we're as simple as just having herpes viruses do damage to my mitos, all would be easy. Maybe this approach would bring a cure to some of you.


However, I had damage from Cipro and 2 chemo drugs known to cause mitochondrial damage before the viruses rose up. I also had genetic iron overload missed by my doctors til the excess iron had caused Fenton reactions and hydroxyl radicals to damage my cells. And, I had chlamydia and mycoplasma pneumoniae that were finally eradicated by 4 months of IV antibiotics after oral antibiotics failed, which wiped out the oxalate degrading bacteria in my gut causing mito-damaging sharp oxalate crystals to form. And autoimmunity, triggered by the infections. I have been unwinding each of these issues, too, and maybe fully resolving each one, excepting the genetic iron overload, which needs to be optimally managed, will completely cure me.

I don't expect all of you will also gave all my issues, but having communicated with many of you,. I've learned that a great many of you have other complicating factors including heavy metals, mycotoxins, lipopolysaccharides, other gut issues, nutrient deficiencies/imbalances, collagen deficiency/structural issues, etc.

Unless all the cell dangers are dealt with, and the body's processes righted, it will be challenging to get better. One thing may have set off a cascade of other damaging events and imbalances. It's not so easy to put Pandora back into the box with a pill. I think if will take thoughtfully unwinding the damage that's been done and repairing what's gone awry to get to a cure.

I've dug into mitochondrial medicine, and there are too few doctors and must of them are only interested in helping little children with genetic mito diseases not die. It's rare that they'll see an adult patient. Even when they do, the tools they have are different than the rest of medicine - they use large doses of mito nutrients to help patients function better. There are mito and metabolism research groups, but they don't really see patients. No one is developing solutions for patients with acquired mito damage - it's a dream for the future as diabetes, cardiovascular, and Parkinson's and other neurodegenerative diseases are known to have damaged mitochondria. Where the most money is these days is in curing cancer - every known cancer has abnormal mitochondria. What we can learn from cancer research is amazing. There's also anti-aging research, which offered hope, too.

The attached paper is from some of these researchers. I was familiar with their previous, independent work, but pleased to see them finding each other and talking to each other, and think that learning from their combined work can help us.
 

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raghav

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If OMF does not want to fund Prusty at least can they replicate the test in their labs and find out what the factor in the blood is ? That will give us a big boost in finding cure from existing drugs in tandem with measuring impedance (nanoneedle or no nanoneedle ) If the nanoneedle is not working use a goddamn 10 dollar multimeter !
Edited
I hereby rename nano needle as nono needle :D
 
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Badpack

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Even if Prusty is wrong with all of this, at least he talks to us and shows real compassion in his work. Kinda refreshing. You can feel he is doing it from the purest of his heart. Lets hope some ppl can pick it up and repeat it now. Till then i will drown myself in IlexgeninA hoping for SS31.
 

Learner1

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If OMF does not want to fund Prusty at least can they replicate the test in their labs and find out what the factor in the blood is ? That will give us a big boost in finding cure from existing drugs in tandem with measuring impedance (nanoneedle or no nanoneedle ) If the nanoneedle is not working use a goddamn 10 dollar multimeter!
This thing isn't going yo be solved by one drug that tests well in the nanoneedle. We keep looking for the Holy Grail. You can't put Humpty Dumpty together with just glue, because Humpty splattered Al over the wall and walk and turned into scrambled eggs in the sun and then spoiled and dogs and ants ran around. It's going to take more going to fix cells that have HHV6 embedded in the DNA and mitochondria that are fragmented. There's a lot of collateral damage to cells and mitochondria. Yes, it's harder, but that's what we're faced with. Best case, it's a multi step approach.
Till then i will drown myself in IlexgeninA hoping for SS31.
What, exactly does IlexgrninA do? And does SS31 rid us of the HHV6 in our DNA, repair our immune systems, or fix our fragmented mitochondria? And if the factor in the blood is an antibody specifically targetting sncRNA U14, then what? Enbrel, Remicaid or Rituximab?
 
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godlovesatrier

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I have to agree to Learner. There's more to this than just anti viral treatment or mito treatment. The cure will require likely as Learner says a multi step approach. But these mitochondrial drugs if tbey are anything like uniquinol will only work for a short time. Until that under lying issue is also treated it just paints over a crack. Somewhat like Dr Chias patients who have to take 6 equilibrant tablets every day for life.

As for the costs it sounds like if we currency and consultancy fee adjusted the costs are the same. I didn't include consultancy fees because id rather get a test myself. Although all of the mito tests can only be ordered by a clinician which doubles the cost. Also the clinicians are all in London. I contacted all 14 myself. Only 2 are remotely affordable and all are in Surrey/London. Not saying you haven't got issues over there too. It sounds just as bad. It's also the same for us here if we get insurance the devil is in the detail. You could be exempt for all sorts of reasons.

Annoyingly I was about to start a new job wirh a great medical package but that all disappeared with covid.
 
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Could the factor in the blood be an antibody specifically targetting sncRNA U14 ? How to test that ?
I don't think so. The "factor" is the size of an exosome, so about 30-150 nm. An antibody is only 10 nm.

This thing isn't going yo be solved by one drug that tests well in the nanoneedle. We keep looking for the Holy Grail. You can't put Humpty Dumpty together with just glue, because Humpty splattered Al over the wall and walk and turned into scrambled eggs in the sun and then spoiled and dogs and ants ran around. It's going to take more going to fix cells that have HHV6 embedded in the DNA and mitochondria that are fragmented. There's a lot of collateral damage to cells and mitochondria. Yes, it's harder, but that's what we're faced with. Best case, it's a multi step approach.
It could be that the drugs that test well in the nanoneedle don't work, but what if they do? We will never know unless we try. Most of the drugs that could reverse mitochondrial fission have never been used in ME/CFS patients, and some of them haven't even been used in vivo. Drugs like SS-31, p110, mdivi-1 or M1 hydrazone. It could be that a multi-step approach will be the final solution. But then again, the mitochondrial route has a growing body of evidence. Again, no one will ever know unless someone tries them out.

What, exactly does IlexgrninA do? And does SS31 rid us of the HHV6 in our DNA, repair our immune systems, or fix our fragmented mitochondria? And if the factor in the blood is an antibody specifically targetting sncRNA U14, then what? Enbrel, Remicaid or Rituximab?
Ilexgenin-A inhibits DRP1, which regulates mitochondrial fission, at least in vitro. It's found in shan-lv tea. SS-31 could fix the fragmented mitochondria, which could lead to all the other issues being resolved. It hasn't done too well in clinical trials on mitochondrial diseases, but again, we just can't know unless we try it.
 

godlovesatrier

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@sebaaa You might find this interesting https://bpspubs.onlinelibrary.wiley.com/doi/abs/10.1111/bph.14823
@Learner1

I've had fantastic results with Andrographis, it's helped treat part of my ME I have no idea what. Could be lyme bacteria, could be anything. From the article:

Andrographolide administration improved behavioural deficits and attenuated loss of dopaminergic neurons in MPTP‐exposed mice and reduced cell death induced by rotenone in vitro. An increased mitochondrial mass, and decreased surface area were found in the striatum from MPTP‐PD mice, as well as in rotenone‐treated primary neurons and SH‐SY5Y cells, while andrographolide treatment preserved mitochondrial mass and morphology. Dynamin‐related protein 1 (DRP1) was identified as a target protein of andrographolide. Andrographolide bound to DRP1 and inhibited its GTPase activity, thereby preventing excessive mitochondria fission and neuronal damage in PD.

I only stopped taking this about a month ago as I left the winter season and entered spring. I always feel good for a few weeks after stopping Andrographis and then all my symptoms return. Maybe it's due in part to the DRP1 content?

The reason I googled this is because you mentioned Shan-lv tea which is very bitter. Andrographis is extremely bitter, but you can buy it in extract form unlike the tea which means each capsule has 10% andrographolides. It does make me wonder if this is why andrographis has always been my best friend with both illness (viruses) and energy. In the spring and summer months I can take andrographis 3x a day and live a reasonably normal life. It also crosses the BBB and I believe has hugely reduced my cognitive issues, especially dizziness. As it is favoured in auto immune patients, it stimulates the immune system without causing direct damage to it in the process. It also acts like a benzo - calming the CNS.

@Hip has also calculated that Andrographis is also 1 quarter the viral strength of Valtrex
 

Learner1

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Drugs like SS-31, p110, mdivi-1 or M1 hydrazone. It could be that a multi-step approach will be the final solution. But then again, the mitochondrial route has a growing body of evidence. Again, no one will ever know unless someone tries them out.
None of these is FDA approved. Someone needs to run clinical trials for some indication then get it approved (likely as an orphan drug). Then, 5-10 years later, it goes on the market for that one indication at some exorbitant price that our insurance/government will refuse to pay for. These things all look worth experimenting on, but they don't look like anything that will help anyone over 50 soon enough.

The problem is, one can count mitochondria helping drugs on the fingers of one hand. Or maybe one finger. This is an area that more science is needed and more clinicians helping with.

I've spent the past 5 years asking the cancer survivorship people at 2 major cancer centers how they are going to fix the mitochondria they damage with their chemo drugs and radiation and all I get is blank stares and "Gee, we're sorry."

And the few mito doctors there are won't see ME/CFS patients or cancer survivors, and even if they would, they don't know what to do, as they are focused on little children with genetic mito diseases.

However, the good news is mitochondria can recycle every 6 weeks or so. Ideally, if there's enough raw material around to make new ones, they'll form. One can stimulate the proliferation of more mitochondria, too.

Seems to me the questions are, how to stop the damage bring done, by stopping this aberrant viral process, then fixing the mitochondria by getting happy ones to be created in the recycling process, which can be done without a drug today.
Ilexgenin-A inhibits DRP1, which regulates mitochondrial fission, at least in vitro. It's found in shan-lv tea. SS-31 could fix the fragmented mitochondria, which could lead to all the other issues being resolved. It hasn't done too well in clinical trials on mitochondrial diseases, but again, we just can't know unless we try it.
Again, mitos have a short lifespan. Why not just make good new ones?
Thanks! Very interesting!
 
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Badpack

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@Learner1 the assumption right now is that the mitochodria are in a state of infinite fission because of, yet unknown (possible small non-coding RNA U14), components in the blood. So the approach of "just make new ones" wont bring us far. Because the mitochondria arent defect. They just malfunction. So new ones wont help. But stoping the forced fission could help. Thats the hype around those things mentioned here, like SS31, Ilexgenin A, mdivi-1 and so on.
 

MonkeyMan

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This thing isn't going yo be solved by one drug that tests well in the nanoneedle.

Respectfully, I cannot agree. If I sleep less, I feel much more energetic and clear-headed. So my working hypothesis is that the "something in my blood" is created while I sleep. If there is an agent that can stop this substance from being produced by my body, then I expect it would have a major beneficial effect on how I feel.
 

MonkeyMan

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If OMF does not want to fund Prusty at least can they replicate the test in their labs and find out what the factor in the blood is ? That will give us a big boost in finding cure from existing drugs in tandem with measuring impedance (nanoneedle or no nanoneedle ) If the nanoneedle is not working use a goddamn 10 dollar multimeter !

Couldn't agree more!
 
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None of these is FDA approved. Someone needs to run clinical trials for some indication then get it approved (likely as an orphan drug). Then, 5-10 years later, it goes on the market for that one indication at some exorbitant price that our insurance/government will refuse to pay for. These things all look worth experimenting on, but they don't look like anything that will help anyone over 50 soon enough.
I don't think it's too difficult to get them on the market without FDA approval. They're readily available from Sigma-Aldrich and Alibaba. Just about anything can be sold as a research chemical.
 

Badpack

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@sebaaa no FDA approval, no patent, no money. So dont expect anything below 5-10 years without patients going out of there way to play the guinea pig.
 
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So dont expect anything below 5-10 years without patients going out of there way to play the guinea pig.
... Which is literally what most ME/CFS patients are doing. How many times have you, among others, mentioned wanting to get your hands on ss-31?
 

Badpack

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@sebaaa yea, its pretty sad that this is our only way. Just like the Ampligen study, which needs the participants to pay for the Ampligen to get it done.
I already paid 8k for rituximab and other treatments by now that all did absolutely nothing.
 
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