ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[Reading_Steiner]

I think the ACV is part of the pre workup to see how the patient responds. I assume it's like the succinic acid - you take a bit as a challenge to see how the body responds first.

I think the succinic acid challenge is only mentioned in the v2 pdf version. From memory anyway. Here we go from v2:

View attachment 42740

30 mg approx of succinic acid reverses almost all cfs symptoms for me for 6 to 8 hours. I didn't need to go up to 100mg, the response was so strong I would probably get good effect at 10mg. I was just eager to know if his stuff worked and whether it would work for me too, and this way was quicker than waiting to see if the immune system would activate when taking all the mushrooms and stuff. I plan to try the full thing soon but I am still missing the sodium benzoate and some digital weight scales.

 

[xebex]

@Reading_Steiner thats amazing! @joshua.leisk Was it mentioned anywhere why you couldn’t just take it daily to keep CFS at bay? Obviously you want a cure but could this be an interim solution?

Also I found this, any thoughts on it?
https://shop.zdravnitza.com/en/othe...odine-succinic-acid-and-vitamin-pp-30-ml.html

 

[Dubitat]

So far:
CFS/ME - most people
Bipolar disorder
Anxiety
Autism
IBD
Schizophrenia
Rheumatoid arthritis
Multiple sclerosis
Ehlers Danlos Syndrome
Lupus
Sjogrens
Major depression
HIV
Autism
2 more people starting soon with Parkinson’s disease..

Are you claiming to treat all of these disorders with your protocol?

 

[joshua.leisk]

Are you claiming to treat all of these disorders with your protocol?

Yes, these are just the ones we're testing now for case reports. Early results are highly positive.

We're in discussions around the structure for a clinical trial here in Australia. From the advice we've taken, at this stage it looks like we'll have 1 trial with cohorts of 10 patients for each of diseases we're going to test this against, including a number of different cancers.

 

[joshua.leisk]

yes I thought this too. In the paper @joshua.leisk describes these four things but earlier in this thread there is a coloured chart with all the things, but I'm not sure ACV is on that chart either.

These were from the first and second papers and v2.x draft protocol.

 

[joshua.leisk]

If the patient responds well to the succinic acid and the ALA/ACV combo does that denote a good prognosis for the protocol then working @joshua.leisk ? As I understood it on my first read, I may have got that completely wrong.

Yes. It shows the "mitochondrial fragmentation", as others called it, or a-KGDH deficiency / HIF transcription factors activated, as we described it.

 

[joshua.leisk]

@Reading_Steiner thats amazing! @joshua.leisk Was it mentioned anywhere why you couldn’t just take it daily to keep CFS at bay? Obviously you want a cure but could this be an interim solution?

Also I found this, any thoughts on it?
https://shop.zdravnitza.com/en/othe...odine-succinic-acid-and-vitamin-pp-30-ml.html

Because this is "treating the symptoms" - we did this as part of the v2.x protocol (you also need R-ALA, etc).

Unlike v3.x, it's not curative.

Additionally, as I described in the 3rd paper, anything you do to add energy into the mitochondrial reactions also creates more ROS (urea, PEM) and feeds viral protein synthesis tasks.

This accelerates your disease progression, however that could be somewhat mitigated by combining it with spironolactone or tenofovir.

 

[godlovesatrier]

So in theory you could treat the symptoms with the correct antiviral (for your infections) + amber acid/ACV and ALA? As a purely palliative care protocol not a treatment?

 

[joshua.leisk]

So in theory you could treat the symptoms with the correct antiviral (for your infections) + amber acid/ACV and ALA? As a purely palliative care protocol not a treatment?

Yes, pretty much. That was our old v2.x approach, which included a referral for spironolactone.

In this older version, I'd have typically chosen high dose ACV capsules over amber acid / succinate, as ACV contains other useful things, such as the acetic acid needed to make acetyl-coa. The amount of acetic acid / acetate in the capsules we used equated to around 350mg, 4x a day. Problem was, the popular sources / vendors for these products weren't forthcoming with product information when requested.

We had good success with some Australian and Kiwi brands, which labelled things accurately. I ran into problems with US vendors and after some frustrations, switched to using NAC as the acetate source. This was more reliable and included a cysteine donor.

We also included high dose R-ALA (400mg ballpark), 3-4x a day, along with a little over daily values for B12, B5, P5P.

 

[godlovesatrier]

Interesting. Finding good quality supplements is definitely difficult.

Have any patients not responded to the succinate acid challenge out of interest?

 

[joshua.leisk]

Interesting. Finding good quality supplements is definitely difficult.

Have any patients not responded to the succinate acid challenge out of interest?

Yes. It’ll depend on the serology (the assumption is they have some form of HHV infection, but a number of other factors.

eg. Someone on very high dose B12 will be making succinate already and likely not respond to the test, unless the B12 was depleted.

Anyone with typical hypoxia should see a result.

Would be an interesting test for long covid sufferers.

 

[godlovesatrier]

Interesting. I take aco b12. Transdermally. It's the only b12 I've found that actually works. My b12 serology levels are always fine. When I take aco b12 transdermally I feel a lot better but it leads to very bad insomnia. Last night I took 5-htp 2mg melatonin and 25mg nytol so I could sleep. And it was only the nytol that did the trick.

Thanks for the explanations.

 

[Reading_Steiner]

Because this is "treating the symptoms" - we did this as part of the v2.x protocol (you also need R-ALA, etc).

Unlike v3.x, it's not curative.

Additionally, as I described in the 3rd paper, anything you do to add energy into the mitochondrial reactions also creates more ROS (urea, PEM) and feeds viral protein synthesis tasks.

This accelerates your disease progression, however that could be somewhat mitigated by combining it with spironolactone or tenofovir.

Thought so, based on the light headache I experienced that started about 1 hour after taking it. Other clues A) ME/CFS is thought to be some sort of antiviral mode B) Discussion surrounding the Nanoneedle and experimental drugs that induce the cells to behave normally.

It seems fair to assume that Succinate or even the mushrooms and stuff won't work for all sufferers. This is clearly an important research tool, it can help differentiate subgroups or further elucidate the disease mechanisms ( for the big labs to verify and expand upon your work ). It can allow the patients to test whether they might be suitable for the antiviral treatment without making big financial investment up front.

It struck me yesterday that this drug has long been associated with treating mitochondrial disease, its widely available ( 30,000 tonnes per year around the world produced estimated ), inexpensive. The label on the box even says 'improves metabolism and energy supply', so I found it odd that seemingly nobody had tried this already. Dubitat said in the other thread that they had tried it, up to 500mg, and it had no effect for them.

 

[joshua.leisk]

Thought so, based on the light headache I experienced that started about 1 hour after taking it. Other clues A) ME/CFS is thought to be some sort of antiviral mode B) Discussion surrounding the Nanoneedle and experimental drugs that induce the cells to behave normally.

It seems fair to assume that Succinate or even the mushrooms and stuff won't work for all sufferers. This is clearly an important research tool, it can help differentiate subgroups or further elucidate the disease mechanisms ( for the big labs to verify and expand upon your work ). It can allow the patients to test whether they might be suitable for the antiviral treatment without making big financial investment up front.

It struck me yesterday that this drug has long been associated with treating mitochondrial disease, its widely available ( 30,000 tonnes per year around the world produced estimated ), inexpensive. The label on the box even says 'improves metabolism and energy supply', so I found it odd that seemingly nobody had tried this already. Dubitat said in the other thread that they had tried it, up to 500mg, and it had no effect for them.

It has some really useful functions.

I’d keep it on hand in case you ever needed an emergency exit for doing the GDH-knockdown fast.

 

[godlovesatrier]

Dubitat said in the other thread that they had tried it, up to 500mg, and it had no effect for them.

Have you got a link?

Thanks.

 

[Reading_Steiner]

Have you got a link?

Thanks.

here https://forums.phoenixrising.me/thr...-succinic-acid-amber-acid.83827/#post-2337287

 

[Dubitat]

It struck me yesterday that this drug has long been associated with treating mitochondrial disease, its widely available ( 30,000 tonnes per year around the world produced estimated ), inexpensive. The label on the box even says 'improves metabolism and energy supply', so I found it odd that seemingly nobody had tried this already.

Succinic acid has been discussed and tried before, including on this forum: https://forums.phoenixrising.me/thr...ied-for-mito-disease-fumaric-acid-also.56669/

The NutrEval test results have also been shown to be unreliable. People who purchase multiple tests get different results every time, ranging from too low to too high: https://forums.phoenixrising.me/threads/wildly-swinging-krebs-cycle-labs-can-someone-help.53275/

 

[Dubitat]

Yes, these are just the ones we're testing now for case reports. Early results are highly positive.

We're in discussions around the structure for a clinical trial here in Australia. From the advice we've taken, at this stage it looks like we'll have 1 trial with cohorts of 10 patients for each of diseases we're going to test this against, including a number of different cancers.

You are also claiming this protocol will work against different types of cancer?

 

[joshua.leisk]

Have you got a link?

Thanks.

The interesting thing is - 500mg would have the opposite effect.

Dose is important.

 

[Hoosierfans]

Hey all, been surfing the thread and wanted to respond to a few questions / thoughts!

that's encouraging! i have been using their lions mane and will be getting the reishi soon!

what did you do about the hives caused by the lions mane? do you still take it?

I stopped it for several weeks and then reintroduced to make sure it was the Lions Mane and not something else. Hives returned. So I stopped again, waiting another couple of weeks and now take just a very small dose (1/2 cap once per day).

@Hoosierfans - thanks for the report. I appreciated your letting us know that your symptoms are not post - exertional, unless I misunderstand you - PEM. I always thought that was the hallmark of ME, as opposed to MS, for instance - but maybe that's CFS. Or maybe that has changed over time for you. Whatever is happening, I hope this protocol works out really well for you

. Correct, I don’t have PEM as I’ve heard so many people here describe it (crashing after exertion). I have been diagnosed with ME / CFS (in other words, it’s on my medical chart), but I don’t meet the more stringent, most recent criteria that requires PEM as a symptom. I’ve had some recent testing done and more and more it’s looking like I have some smouldering viral infections and a lot of nasty autoimmune antibodies that are attacking my peripheral and central nerves, as well as my vascular system.

I do rather like @Hoosierfans - apart from being just an all-round good person, she also has a very interesting set of symptoms and some variations outside the standard HHV serology, etc. I anticipate we'll get to the bottom of these fairly soon. The additional scope from the serology profile may be adding some fresh challenges, but I think we're getting somewhere.

. Awww shucks.

Have any patients not responded to the succinate acid challenge out of interest?

. I’ve tried almost all of the Protocol, in the various versions, with the one exception being the succinate. That’s really the only thing, besides spironolactone (but I’m taking valcyte in it’s place), that I have not tried.