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

[Pyrrhus]

I am wondering if anybody has experience with low dose Valcyte? It would seem to me that the normal dose is way too strong for long term use and very expensive, even at todays lower prices. I would be happy to hear any stories, good or bad, about this.

Direct antiviral drugs such as Valcyte generally do NOT have a linear dose-response relationship. This means that the antiviral activity (and any related side-effects) is not simply proportional to the dosage.

Generally speaking, the standard dosage for a direct antiviral drug like Valcyte is chosen to be the lowest possible dosage that suppresses the virus. Generally speaking, a dosage below the standard dosage can NOT be expected to suppress the virus. As a result, some people get much worse side-effects from a lower sub-standard dose than they get from a standard dose.

Hope this helps.

 

[Badpack]

@junkcrap50 can you send me the link where you saw the $1000/month ss31? thank you.

 

[jstefl]

@Pyrrhus I thought that I had remembered someone on this site talking about this. I am sure that you are correct in what you are saying, but I would like to get an additional opinion from someone that has tried this.

Valcyte is an expensive drug and I was fortunate to have a doctor that would prescribe it and an insurance company that would pay for it. I remember taking almost $ 40,000.00 worth. There wasn't much information available twelve years ago+ and after 10 months I didn't see much change happening, so I was glad to stop.

At this point I doubt that my doctor would prescribe it and it is still expensive enough that I don't want to try buying it offshore unless I had some indication that it would help me.

The many improvements that I gained from the Valcyte have stayed with me for all this time for which I am very grateful, the only symptom that didn't improve is my fatigue, and I would really like for that to happen.

 

[wigglethemouse]

Cort Johnson wrote a clear description of this paper in his blog

Explaining ME/CFS? Prusty / Naviaux Study Ties Infections to Energy Breakdowns
https://www.healthrising.org/blog/2020/04/26/explaining-chronic-fatigue-syndrome-naviaux-prusty/

 

[Jessie 107]

@junkcrap50 can you send me the link where you saw the $1000/month ss31? thank you.

I would also like to know how to get SS31, I am severe /bedbound, frustrating to know this drug could potentially give me my life back, science taking so long.

 

[sebaaa]

@junkcrap50 can you send me the link where you saw the $1000/month ss31? thank you.

I would also like to know how to get SS31, I am severe /bedbound, frustrating to know this drug could potentially give me my life back, science taking so long.

I'm not sure which website he's talking about. It could be Alibaba. If you have a company you can request a sample of a few grams if you pay the shipping. That should be enough to test it for a few weeks. I'm also not sure how you intend to take it. IV seems a bit risky so oral might be better even though you might need to increase the dosage.

 

[Badpack]

@sebaaa thanks, he pm'd us already with the details. The studies use 40mg daily s.c. (subcutaneous). Oral cant work bc you would just digest the protein. I dont know about iv. (which isnt really suitable anyway if you want to do it on your own anyway).
Despite saying that, I think i will contact stealthbio first and see how far i come. I know its a 99% no, but cant be sure till i ask right?

 

[GlassHouse]

This is interesting and I’d like to know more. I had active HHV7 in my spinal fluid and tissue from my stomach/ SI/ colon. I did IV Vistide for 5 months. I had to stop because, once Covid19 hit the US, the twice weekly safety labs became too much of a risk. I also felt way way worse on the Vistide, like I was being poisoned and the amount of scar tissue I was growing on my veins was really painful (I grow hypertrophic scar tissue as part of my EDS).

I also now have confirmation of severe atlanto-axial instability (plus moderate instability everywhere since I’ve had hEDS my whole life and dislocate my ribs while breathing and my hips/ knees/ ankles whenever I walk through my house). The AAI is cutting off blood and CSF flow to my brain. I had mild dysautonomia since childhood that suddenly became severe along with an altered state of consciousness after the initial encephalitis when I was 21. I think the inflammation from the HHV7 made the EDS ligament laxity worse.

I still have no way to know which, if either, of these is responsible for my mitochondrial impairment (I did the 2day CPET at Workwell back in 2015).

 

[sebaaa]

@sebaaa thanks, he pm'd us already with the details. The studies use 40mg daily s.c. (subcutaneous). Oral cant work bc you would just digest the protein. I dont know about iv. (which isnt really suitable anyway if you want to do it on your own anyway).
Despite saying that, I think i will contact stealthbio first and see how far i come. I know its a 99% no, but cant be sure till i ask right?

Yeah, subcutaneous is what I meant to say. Personally, I still feel like that's a bit risky. I just hate needles. How do you know you can't take it orally? Do you have a source on this? Shouldn't some of it reach the bloodstream if you take enough?

 

[junkcrap50]

How do you know you can't take it orally? Do you have a source on this? Shouldn't some of it reach the bloodstream if you take enough?

Maybe sublingually that would work. But considering how expensive SS31 is, not practical.

 

[Badpack]

@sebaaa http://www.pharmatimes.com/news/oral_copaxone_for_ms_dropped_from_development_995357 its kinda like copaxone, which failed horribly trying it oral. Like @junkcrap50 said, maaaaybe sublingually, but the doses needed for the price asked would be horrendous and not practical.

 

[sebaaa]

Maybe sublingually that would work. But considering how expensive SS31 is, not practical.

@sebaaa http://www.pharmatimes.com/news/oral_copaxone_for_ms_dropped_from_development_995357 its kinda like copaxone, which failed horribly trying it oral. Like @junkcrap50 said, maaaaybe sublingually, but the doses needed for the price asked would be horrendous and not practical.

Stealth was trying develop an oral version at one point. Here:

Also, the company is developing an oral formulation of elamipretide , which targets mitochondria and reduces the production of excess reactive oxygen species. . .

Maybe it didn't work. I'm curious if a spray or a topical solution would work. Please let us know if you guys get your hands on it and if it works.

 

[godlovesatrier]

I also saw the ss31 links, when i contacted the said companies I got no response.

I was fairly convinced however on the links I did find that you couldn't buy it unless you were a science institution or a researcher, due to it being experimental. Even so we don't really know te long term effects, like so many other treatments you ight find out A) you have to stay on it for life at some unknown dose or B) it works for a few months and then suddenly stops. Everyone here has had this happen with a wide variety of different supplements and botanicals alike. Not all I know, but most I would say.

Also I checked valcyte and valtrex prices again (2 years after my last look), worked out about £6000 a month based on Lerner's required dosings.

 

[Matthew_2]

Does anyone know of any attempts to take this line of research to explain any of the autonomic dysfunction that plague so many with ME/CFS?

 

[percyval577]

Does anyone know of any attempts to take this line of research to explain any of the autonomic dysfunction that plague so many with ME/CFS?

There is none, so far, and will not occur in any self suggesting manner, I guess.

I think one also must reject the idea that the result would automatically explain any muscles feelings.


They say that there is something in the blood (from cells with integrated HHV-6) that alters the cells they looked at. This would go along with findings on blood cells, and with Davis´s finding that there is something in the blood.
One must but insist, that the majority of cells of the body doesn´t seem to work wrongly (at least I am not aware of obvious and known failures). So, how important can this something be? For which units of the body?

 

[raghav]

@sebaaa http://www.pharmatimes.com/news/oral_copaxone_for_ms_dropped_from_development_995357 its kinda like copaxone, which failed horribly trying it oral. Like @junkcrap50 said, maaaaybe sublingually, but the doses needed for the price asked would be horrendous and not practical.

@Badpack I tried Copaxone generic Glataxone from NATCO pharma subcutaneous for 11 days and stopped it since it made me extremely restless. FYI.

 

[ScottTriGuy]

with post-viral ME should all be on anti-retrovirals for the rest of our lives.

As I've said before and elsewhere, I often wonder if the antiretorivirals I take are why I'm 'healthier' then the majority of ME people I know.

 

[wigglethemouse]

Does anyone know of any attempts to take this line of research to explain any of the autonomic dysfunction that plague so many with ME/CFS?

I did look at google. There were articles about Diabetes and the effect on mitochondria came up. Several papers mention fission leading to increased DRP1 and other proteins which have been observed in diabetic neurpoathy. Neuropathy is damage to the nerves, which could then cause autonomic dysfunction............. I thought it was interesting but I'm not able to judge how valid that might be.

 

[Murph]

I know its a long shot, but maybe we can contact stealth biotech, the owner of SS31. Im not a native english speaker, so i dont feel that comfortable to do so. Maybe we could ask them, if by any chance, we can get our hands on SS31. Whats your opinion? Here is their eMail: info@stealthbt.com

Can someone please explain why this thread has turned into a desperate search for ss31? Absent a good explanation, @Sushi I propose this thread be kept on the topic of Prusty's paper.

 

[Learner1]

Prustys paper is fascinating. HHV6 or other infection getting stuck and causing mitochondria to fragment. If makes a kit of sense.

I still think we are likely to have different variants of this, those of us who have it at all I didn't think I was sick for about 2 years, but turns out my immune system was do screwed up it didn't know how to be sick. I have very high CMV and HHV6 numbers AND a positive PCR for EBV with fee antibodies and no IgM. With a HSV2 outbreak every so often. No fever.

1.8g a day of Valcyte for 12 months followed by another 8 months of 900mg a day helped a lot. After the first year, I embarked on a Mitochondrial repair program. Mitos recycle every 6 weeks or so. I'm not sure what Prustys fragmented mitos do - do they recycle too, into more fragmented mitos? Or good ones? I have a hard time thinking every single mito in the body is fragmented. We have millions of them in all of our cells. Is it only certain ones? Do they recycle? How do they get repaired! Does PARP fix them? Or what mechanism?

If we have enough asparagine (which I tend to run short of) dies this let the fragmented ones die off? My mito content was under 50% of normal. On the next test, it was 150% of normal, but I was depleted in asparagine which causes apoptosis of old, defective mitochondria. I took asparagine for 9 months, and my mito content went back down.

I added NT Factor phospholipids in the ratios they are found in mito membranes. I added B vitamins, BH4 (Kuvan)and C to reduce peroxynitrite production from superoxide radicals my mitos seemed to make too much. of. I took BCAAs, needed by mitos. I took ALA to get toxins out of my mitos. And added NMN and/or NAD+

I still have a few issues, like optimizing Darth acid oxidation and making enough pyruvate, but, all this work to shut the viruses down and get my mitos working better has been paying off. I have downhill skiied, I've walked 10.9 miles in a day, my life is fairly normal these days when I was at 40% of normal 4 years ago.

I do not believe there's one drug, SS31, copaxone, or whatever, that's going to fix us vecsusectgerex been a Cascade of events that's been going on ever since the initial insult But, I do think that reading the literature to get exists on shutting these viruses down and repairing mitos can get us a long way.

Prustys work is big breakthrough. I wish the researchers would start finding treatments. I think that others could benefit from some of the things I've tried - I read the mito and ME/CFS literature and did what was suggested... I'd like to know if more people could be helped....