Purported cure for Latent Virus sustained ME/CFS by Joshua Leisk and Aline Nocon

[joshua.leisk]

I'm experiencing a return of normal symptoms as I taper off the Sodium Benzoate ( got it down to 0.2g now ),
no headaches in particular, or rather not the feeling that I really need to take it to relieve the pressure feeling.
So basically I felt really sleepy, lied down for a few hours without actually sleeping, just watched videos,
noticed my heart rate was up again and 'stronger', muscles in my thigh felt more sensitive and generally I had the feeling that I will get PEM if I keep trying to use energy. Now having some stomach issues flaring up again, this makes me wonder if the gut bacteria could be feeding on the excess nitrogen things we are generating ?
This isn't really a surprise because Joshua said that ' sodium benzoate provides a low energy pathway for removal of excess nitrogen'. So taking that away and the body gets stuck again in that cycle of maladjusted energy generation -> stop and purge the waste products -> repeat. Its also been a good few days now since I last took the succinate and I wonder if that may have an effect. Oh also fever is disappointingly lower / not obvious today.

We monitored someone using sodium benzoate for over 3 months, back on v1.x. It may be helpful by mechanistically being useful for the nitrogen management aspect (and downstream PEM reduction in our model), however wouldn't normally be needed once the triterpenes (reishi) are working..

The drowsiness and fatigue is hopefully an early indication of the expected immune response. Based on our experiences, people have seen these symptoms and liver pressure / tenderness (poking themselves just below the sternum) right before the "mono" stage. If someone wasn't seeing this within a week, I'd be eyeballing the reishi product, the amount of beta-glucans and the serum D3 status.

The stomach issues flaring up sound like a positive immune response. If it was me and they were tolerable, I'd be inclined to maintain or increase the beta-glucans and see if the stomach issues increase.

 

[joshua.leisk]

I took two capsules in the evening, I 'll take one in the morning next time...

The dose and timing is really important in our protocol.

The half life of EGCG is about 3.5 hours. Too much EGCG will “knock down” GDH, which is undesirable outside of the fasting protocol. Our goal with the protocol is to normalise GDH, which requires a mild/moderate reduction.

It’s really odd that most EGCG supplements available are “knock-down” doses.

One EGCG-containing supplement that we’ve found can be useful is Life Extension Mix, where they have 12 capsules being their “daily dose”, which can be broken up / reduced as desired.

We’ve done small scale testing and 2 of their capsules is approximately 25mg of EGCG and a good serving of B vitamins, etc., which can be used every 4.5h.

Most of the other EGCG capsules need to be opened and split into 8-10 doses.

 

[joshua.leisk]

How sure you are about the liposomal glutathione being essential?

I ask because I always been sceptical about the promotional unsubstanciated claims about superiority in intracellular absorbtion of liposomal ascorbate. Only last year finally a study testing found liposomal at equal doses increased serum levels equally, but intracellular levels only the area under the curve 50% larger. If one considers that liposomal is up to 80 times more expensive, and with only 50% more of super cheap ascorbic acid the exact same effect - not really cost-effective in any way,

To my knowledge, liposomal glutathione has also not been tested in humans but mice, which alledgedly already absorb regular glutathion much better than humans. Any additional research you came accross in humans I'm not aware of?

In the end, all of the following items are utilized for ROS reduction in this protocol:



I could think of dozen other co-factors in ROS reduction. Or much more effective doses, for example with vitamin C.

Also this article is interesting: https://drknews.com/glutathione-recycling-for-autoimmune-disease/ in mentioning alternative methods of boosting - like with nebulizer or suppository - as well as recycling glutathione:



Many more such articles about raising glutathione found on the net. For example: http://www.immunehealthscience.com/how-to-raise-glutathione.html or https://selfhacked.com/blog/glutathione-20-scientifically-proven-health-benefits-glutathione/



In the end, oxidative stress and glutathione status could actually be very different in different individuals, requiring different interventions. Not always the most expensive interventions - like liposomal glutathione - are that neccesary or even cost-effective.

Take my latest results:
oxidated LDL (oxLdL; 20-170 normal range; <60 optimal range): 44 ug/l (down from 140)
Glutathione peroxidase (GSH-Px; Selenium dependent; 27.5-73.6 normal; 69-90 optimal): 78 U/gHb (up from 43)

I think that an already by a 2/3 reduced oxidative stress, and doubled GSH-Px activity wouldn't still require the same ammunition.

We've had previous success with just high-dose R-ALA alone.

The challenge is consistency with results, due to individual circumstances. Without knowing exactly what each person is fighting with, a wider approach to supporting the key elements of ROS management may provide a more robust treatment protocol.

One concern with the non-liposomal glutathione products is that although they're digested and cleaved into parts that can be reassembled as glutathione, in our disease model, these metabolites are frequently used for other pathways, so there was no guarantee that glutathione would increase. I'd expect someone without ME/CFS / animal studies to have less issues around this.

You could look at IV and rectal administration of non-liposomal glutathione, however these options may be less attractive.

 

[godlovesatrier]

I'm experiencing a return of normal symptoms as I taper off the Sodium Benzoate ( got it down to 0.2g now ),
no headaches in particular, or rather not the feeling that I really need to take it to relieve the pressure feeling.
So basically I felt really sleepy, lied down for a few hours without actually sleeping, just watched videos,
noticed my heart rate was up again and 'stronger', muscles in my thigh felt more sensitive and generally I had the feeling that I will get PEM if I keep trying to use energy. Now having some stomach issues flaring up again, this makes me wonder if the gut bacteria could be feeding on the excess nitrogen things we are generating ?
This isn't really a surprise because Joshua said that ' sodium benzoate provides a low energy pathway for removal of excess nitrogen'. So taking that away and the body gets stuck again in that cycle of maladjusted energy generation -> stop and purge the waste products -> repeat. Its also been a good few days now since I last took the succinate and I wonder if that may have an effect. Oh also fever is disappointingly lower / not obvious today.

Interesting I had be exact same response as you. It could be a coincidence. But I too was sleepy in the evening. Although I ended up wide awake after taking the glycine and egcg in the evening. So I assume the caffiene kept me awake. Also I feel rough thismornjjg, mild ME symptoms.

The dose and timing is really important in our protocol.

The half life of EGCG is about 3.5 hours. Too much EGCG will “knock down” GDH, which is undesirable outside of the fasting protocol. Our goal with the protocol is to normalise GDH, which requires a mild/moderate reduction.

It’s really odd that most EGCG supplements available are “knock-down” doses.

One EGCG-containing supplement that we’ve found can be useful is Life Extension Mix, where they have 12 capsules being their “daily dose”, which can be broken up / reduced as desired.

We’ve done small scale testing and 2 of their capsules is approximately 25mg of EGCG and a good serving of B vitamins, etc., which can be used every 4.5h.

Most of the other EGCG capsules need to be opened and split into 8-10 doses.

Are you able to link the lfe? I had a look but couldn't spot it. I'm worried that my dosing is wrong for egcg as well.
As I haven't had a proper immune response at all. I started the lion's mane last night took 2 capsules about 800mg and experienced no immune response. So I'm sceptical that my body is actually going to respond to beta glucans at this point.

Vitamin d levels are fine. I've had it tested loads of times it's always ok.

 

[pamojja]

Are you able to link the lfe?

https://www.lifeextensioneurope.com/life-extension-mix-capsules#description

I've had it tested loads of times it's always ok.

Which range of levels is actually required?

 

[Reading_Steiner]

Interesting I had be exact same response as you. It could be a coincidence. But I too was sleepy in the evening. Although I ended up wide awake after taking the glycine and egcg in the evening. So I assume the caffiene kept me awake. Also I feel rough thismornjjg, mild ME symptoms.



Are you able to link the lfe? I had a look but couldn't spot it. I'm worried that my dosing is wrong for egcg as well.
As I haven't had a proper immune response at all. I started the lion's mane last night took 2 capsules about 800mg and experienced no immune response. So I'm sceptical that my body is actually going to respond to beta glucans at this point.

Vitamin d levels are fine. I've had it tested loads of times it's always ok.

they take a while to build up I think, 20+ hour half life, remember reishi also have beta glucan which probably vary per product, I didn't start to get a good fever until 24 hours after starting both.

 

[pamojja]

Which range of levels is actually required?

When I did some personal testing, 5000IU gets me to 120nmol/L ballpark, 10000IU got me to 240nmol/L. According to an infectious disease expert I’ve been enjoying getting to know, somewhere inside of that range has been useful for his CFS/ME patients.

So between 48-96 ng/ml.

 

[godlovesatrier]

they take a while to build up I think, 20+ hour half life, remember reishi also have beta glucan which probably vary per product, I didn't start to get a good fever until 24 hours after starting both.

Good to know. I only just started everything in earnest this morning. I feel like inflammation is clearing from my shoulders up into my brain, but can't help but feel I am just imagining this, so we will see. Still very much fingers crossed for me, not where I want to be yet.

 

[Reading_Steiner]

Good to know. I only just started everything in earnest this morning. I feel like inflammation is clearing from my shoulders up into my brain, but can't help but feel I am just imagining this, so we will see. Still very much fingers crossed for me, not where I want to be yet.

cleared but tired I would say, I don't feel like studying anything hard at the moment but at same time my nerves aren't shot anymore, can play video games without feeling tense inside like im gonna have a heart attack, ride fast without it causing exhaustion / crash, and I don't get in a bad mood just by going outside like just before I started doing this. Its a bit paradoxical. My muscles definitely cleared up, I was standing on tip toes to strengthen my muscles up which I never usually do as I noticed its one of those things which is too tiring with me/cfs, I even jumped up to grab a kitchen roll from above the cupboard like it was a basketball hoop because my mum wanted me to get it down ( she uses too much of it, half the amazon rainforest gone ). I very rarely jump, or run. I didn't manage to jump very high though maybe 6 inches to a foot.

 

[godlovesatrier]

Yes the video game thing. That cleared when I took the thiamine. It's a lot nicer. No sudden adrenaline spikes and even if I do have them they don't floor me.

I can't wait to do some excercise to be honest. I miss it so much.

You should notice some personality changes as well. As I say the thiamine just totally changed me over the course of a week. But my body remained weak. It wasn't a cure. So I'm hoping this does cure me like Josh suggests.

Glad you had a decent day. There appear to be 6 of us on the protocol now!!

 

[Reading_Steiner]

This might be useful information for some, NAC is getting removed from stores, in the USA at least, seems to be because big pharma want to turn it into a drug that they can make a lot of money from. I randomly found out about this https://www.naturalproductsinsider....ly-removes-nac-containing-dietary-supplements

 

[godlovesatrier]

Thiamine is used by clinicians in exactly the same way, they use it like a prodrug. It's really bad that they have this kind of power. Removing drugs because there toxic is one thing, removing it just because it could be used as a prodrug is ridiculous. No wonder people have such strong reactions to NAC, it must be because of it's potency factor.

 

[Reading_Steiner]

I got this sooner than I expected, I should be able to say soon whether it makes a difference to the Indigo one which is in alcohol form not capsule. Interestingly this one says on the back that it also has 150mg of 'shell broken' spores. My fever came back a little yesterday but still not overwhelmingly intense, no liver pain, minimal headache, currently at 300mg sodium b 3 or 4 times a day.

 

[Reading_Steiner]

The firs time I took that product it quickly made me feel quite drunk and delirious for a while, and gave me a twitch in my eye temporarily, so possibly an immune activity in the nerves or brain, second and third time didn't cause this.

 

[joshua.leisk]

View attachment 42883

I got this sooner than I expected, I should be able to say soon whether it makes a difference to the Indigo one which is in alcohol form not capsule. Interestingly this one says on the back that it also has 150mg of 'shell broken' spores. My fever came back a little yesterday but still not overwhelmingly intense, no liver pain, minimal headache, currently at 300mg sodium b 3 or 4 times a day.

It's quite a funny position to be in.. probably at no other time of your life have you been looking forward to being extremely sick.

 

[Reading_Steiner]

Seems to be really working now Joshua, I can't sleep at all and its 8am already, too much pain, started feeling some odd signs in the evening ending in strong ear ringing around 2am, tried to sleep but felt itchy and fevered.
So about 7 days in and it seems to have activated.

 

[joshua.leisk]

Seems to be really working now Joshua, I can't sleep at all and its 8am already, too much pain, started feeling some odd signs in the evening ending in strong ear ringing around 2am, tried to sleep but felt itchy and fevered.
So about 7 days in and it seems to have activated.

My condolences for the next few weeks.

 

[Reading_Steiner]

it can last that long huh ? how many people are going through that phase now ?

 

[YippeeKi YOW !!]

is getting removed from stores, in the USA at least, seems to be because big pharma want to turn it into a drug that they can make a lot of money from.

They did the same thing with L-Trytophan in the 80's, when they discovered that a lot of people were using it to ameliorate or totally eliminate migraines. After which they decided to make an unbelievably expensive drug, something like 150 times more than just taking plain old, no longer available, tryptophan, that they called something like Tryptofin II for migraines. It took 20-plus years before L-tryptophan was again available to the general public.

They're miserable money grubbing little parasites, and my real opinion of almost all BigPharma is unprintable, at least in these threads ....

There are also two companies that base their astronomically expensive semi-nootropic "age-reversing" supps on NAC, and they might be the culprits, too ....

 

[joshua.leisk]

They did the same thing with L-Trytophan in the 80's, when they discovered that a lot of people were using it to ameliorate or totally eliminate migraines. fter which they decided to make an unbelievable expensive drug that they called something like Tryptofan II for migraines. It took 20-plus years before L-tryptophan was again available to the general public.

They're miserable money grubbing little parasites, and my real opinion of almost all BigPharma is unprintable, at least in these threads ....

There are two companies that base their astronomically expensive semi-nootropic age-reversing supps on NAC, and they might be the culprits, too ....

I often wonder who’s steering the ship and how they got there.

If this regulatory silliness around NAC continues, a separate L-cysteine supplement and ACV capsules can easily replace it. Bear in mind that other countries will still be selling NAC, so you’ll be able to order it from eg. iHerb, Amazon EU, AU, etc.