ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[joshua.leisk]

In which way does knowing about the viruses influence the protocol? I'm sure I have HSV 1&2 + HPV, but don't know about other viruses. Thanks Joshua!!

For HHV family - mostly to know how much misery you're going to enjoy and for how long. VZV remediation appears to rather unpleasant and needs additional pain meds / scheduling considerations.

Co-infections are currently where my focus is at.

For example, an additional anti-bacterial for T.gondii can be included, if it's known / inferred by DUTCH tests, dopamine metabolites, etc.. A couple of people have reported symptoms / infections which are outside the current scope and as they'll also need resolving, I'm documenting and describing these connections as new inputs to the model, etc.

 

[godlovesatrier]

I wondered why my libido had tanked. Although I noticed this most when taking the reishi and beta glucans. Slightly less once removed. Of course your talking about anti virals but that's just my own experience.

Sadly the blood test I'm now getting doesn't include hormones. Oh well!

 

[seamyb]

Lately, I've been doing my best to provoke any kind of immune response.
Breakfast is getting weird at my place.

View attachment 43202
Since those couple of days I had immune symptoms, I haven't noticed anything intense. Seeing what appears to be ongoing skin and other benefits.

So, does this mean that you are still on this protocol and that you are still susceptible to symptoms?

 

[godlovesatrier]

But as a root cause do you believe the gdh or viral infection comes first? In that correcting the mitochondrial metabolic pathway process might resolve most of the issues.

I ask because I had energy production issues since age 13 and no viral type symptoms until age 30. So I get the impression the metabolic processes that are defective might be driving forces and whilst it's vital to get the viral load down. I've always thought that. Correcting all those other pathways is possibly able to self correct and manage the other viral loads? My timescale of course here is months not weeks to recover by harnessing the power of a healthy immune system and beta glucans to do the shifting. As opposed to adding more compounds in.

I say this because if everyone else has these infections and there not sick it makes sense the metabolic pathways might be a root cause? Or part of it.

 

[joshua.leisk]

So, does this mean that you are still on this protocol and that you are still susceptible to symptoms?

Sorry for the confusion - I haven't had CFS/ME for 25 years.

I'm personally testing the protocol out against ageing / cancer / making sure there are no remaining latent cells in my body - I thought it'd also be useful to know what happens to someone without CFS/ME that takes the protocol.

Also to better understand the various reishi products on the market and prevent unwanted variables.

Given what I've researched and written about, I suspect I'll be continuing at a maintenance dose, indefinitely, using just the primary ingredients.

 

[joshua.leisk]

But as a root cause do you believe the gdh or viral infection comes first? In that correcting the mitochondrial metabolic pathway process might resolve most of the issues.

I ask because I had energy production issues since age 13 and no viral type symptoms until age 30. So I get the impression the metabolic processes that are defective might be driving forces and whilst it's vital to get the viral load down. I've always thought that. Correcting all those other pathways is possibly able to self correct and manage the other viral loads? My timescale of course here is months not weeks to recover by harnessing the power of a healthy immune system and beta glucans to do the shifting. As opposed to adding more compounds in.

I say this because if everyone else has these infections and there not sick it makes sense the metabolic pathways might be a root cause? Or part of it.

I've read studies showing latent infection passed down through the placenta and early childhood exposure.

There are specific situations that cause latent cells to go lytic.

Puberty / high levels of androgens, diet, microbiome, other infections. Via the lytic phase, it now spreads through the host.

If / when the lytic phase is ended, the tissues now begin their 'quiet' latent replication phase and continue taking over the organism, without being interrupted by the immune system.. thus begins the snowball effect..

 

[godlovesatrier]

Yes thanks for the explanation, I'm more in my mind pondering what the root cause might be for those infections to replicate more thoroughly in a large subset of the population, say 25 to 40% and not do so in the rest of the population at large. I guess in a population percentile that big it might be genetic in nature, but we obviously don't know if its down to metabolomics and mitochondrial issues. As the current science is focused there, if it isn't quite the right place to look, it makes sense it might lead to a new immune understanding that we haven't currently got which addresses how that 25 to 40% become sick.

The writer in me can't help but think about it!

 

[pamojja]

Given what I've researched and written about, I suspect I'll be continuing at a maintenance dose, indefinitely, using just the primary ingredients.

Primary ingredients are Reishi, Lion's Mane, Oat bran and EGCG?

 

[MartinK]

@terry_anova wow, amazing news from you. How looks your Spironolactone dose?
Mycomedica is brand from my country - Czech Republic... do you think, its a high quality?

 

[terry_anova]

@terry_anova wow, amazing news from you. How looks your Spironolactone dose?
Mycomedica is brand from my country - Czech Republic... do you think, its a high quality?

.
I'm still waiting for LEF to arrive, shouldn't be too long now maybe 1 more week. Then I'd be able to compare quality, this was actually recommended to me by a woman from Ukraine. My fatigue is mild not severe, in that I can do a fulltime job but with difficulty and need frequent rest, and suffer from PEM, which can be treated.
So I probably won't be able to gauge quality based on symptoms alone.

 

[joshua.leisk]

Yes thanks for the explanation, I'm more in my mind pondering what the root cause might be for those infections to replicate more thoroughly in a large subset of the population, say 25 to 40% and not do so in the rest of the population at large. I guess in a population percentile that big it might be genetic in nature, but we obviously don't know if its down to metabolomics and mitochondrial issues. As the current science is focused there, if it isn't quite the right place to look, it makes sense it might lead to a new immune understanding that we haven't currently got which addresses how that 25 to 40% become sick.

The writer in me can't help but think about it!

My thinking is that it’s probably a race / battle between a fresh lytic infection and the host immune system, taking place in the liver.

.. which in the face of what’s in the protocol could simply come down to something as “trivial” as the dietary content of beta-glucans - oats (western) / mushrooms (eastern). Beta-glucans are in small amounts in wheat and larger amounts in barley, etc.

 

[joshua.leisk]

Primary ingredients are Reishi, Lion's Mane, Oat bran and EGCG?

Breakfast of champions. 😂
The EGCG will have a number of alternatives. Coffee is one I’m still trying to quantify.. there’s about 115 metabolites.. overall, so far it appears as though GDH is reduced by coffee, while increasing beta-oxidation efficiency.. however I’ve barely had time to study it properly.

 

[joshua.leisk]

@terry_anova wow, amazing news from you. How looks your Spironolactone dose?
Mycomedica is brand from my country - Czech Republic... do you think, its a high quality?

Someone else I know has been using that one and is currently switching to LEF. They did see some intense immune response earlier (which beta-glucans would allow for any “visible” cells, however they also have some ongoing issues, which may be diet / drugs / co-infection. We’ll be comparing the LEF to Mycomedica. I’ll update people / the list, as we know more.

 

[terry_anova]

Someone else I know has been using that one and is currently switching to LEF. They did see some intense immune response earlier (which beta-glucans would allow for any “visible” cells, however they also have some ongoing issues, which may be diet / drugs / co-infection. We’ll be comparing the LEF to Mycomedica. I’ll update people / the list, as we know more.

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Seems choco enough in colour, and has a nasty bitter taste but yeah will be comparing both.
.
My immune response has remained quite much the same: Light headache, general tiredness, slight inflammation in spine, throat irritation comes and goes. Not much extra.

 

[pamojja]

Oat bran too seems to come in variations of Beta-glucan content. Shopping around locally (I avoid amazon or ebay) I found most ('Hafer Kleie' in German) actually a mix of bran and germ. By this mixing-up reducing the Beta-glucan content to 3.5% only (on products its content is indicated). Highest I found was pure a Oat bran with 7.5% Beta-glucan.

 

[Marylib]

My thinking is that it’s probably a race / battle between a fresh lytic infection and the host immune system, taking place in the liver.

.. which in the face of what’s in the protocol could simply come down to something as “trivial” as the dietary content of beta-glucans - oats (western) / mushrooms (eastern). Beta-glucans are in small amounts in wheat and larger amounts in barley, etc.

There's someone advocating for a supplement made of the oat plant now. Avena sativa. I think she's using a kind of mineralized water with it. Deep Sea Water.

 

[Marylib]

For your mushroom powder, if anyone is interested or lives not too far from Oregon, US - I know the guy who runs this business. Hopefully the fires in that area last year did not set him back too much. Really great guy. I attended a workshop he did once on growing various mushrooms:
https://myriadmycology.com/?fbclid=IwAR3SJep5yXwjFOyo_PFiH5WHhzyyJUVjKRiJDYe7oqs2z5KFgx2hkTdU7sU

 

[godlovesatrier]

Day 25 today. Still doing well. Muscles were stiff thismorning but no physical fatigue. 4th day without any physical fatigue today. And on the 1st day I had done A LOT the previous day.

I'm excited but trying to remain cautious as we all know it doesn't always last.

How are you feeling now @BrightCandle ?

 

[Marylib]

@joshua.leisk Do you have any (non healthy) women who are following your protocol? Seems it's mostly men on this thread unless I'm reading it wrong..whatever this disease is, it seems much more common in women. Thanks..

 

[godlovesatrier]

I am not sure but I think @BrightCandle might be female. However I agree with you @Marylib would be nice to know the balance as it does mainly seem to be men who've responded and gone into remission.

I know bright candle said her headaches have gone completely after years of not being able to get it sorted.