ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[godlovesatrier]

Sounds good about the protocol. Don't forget activated charcoal binds all sorts of things not just metals. So best taken away from food and possibly even supplements.

I'm just about to try taurine as I'm still waking up as per Josh's comment. Did you find 3mg was helpful then?

I might be starting to feel better today. But what with the old 48 hour delay on crashes and what not it's more me checking for a trend over time. As for mixing the glycine choline and nac with whey isolate that's going down extremely well. Nausea has really dialled right back. Hope to god it stays there tho!

I was totally wiped out last week for 4 days. But that was quite manageable compared to the nausea. I'm actually considering when I should started some graded excercise I think it might help my immune response. My neck still gets stiff easily tho.

Keep us posted how you get on.

 

[Hoosierfans]

@Hoosierfans are you taking the b complex as well?

I am.

 

[joshua.leisk]

I just feel like I am fighting an infection all the time. Feel cold, weak, nausea, no vomiting today so far.

I’d hope so - this is definitely the temporary goal.

By all reports, it won’t be enjoyable, at all.

The liver is an amazingly important organ and is pivotal to almost every pathway your body needs to operate. When it’s inflamed / being remediated, you may expect to feel weak, nauseous, tired, dizzy, etc. Your ability to metabolise things may be impaired.

If it helps people, here’s a model of a human liver, to help identify if this organ is inflamed, etc:

 

[joshua.leisk]

I'm just about to try taurine as I'm still waking up as per Josh's comment. Did you find 3mg was helpful then?

3-4g (about a teaspoon) is the suggested evening dose for sleep.

 

[ilmc]

I'm not following the protocol yet, just trying to see if it fits my case. Thanks for all the updates.

I was wondering regarding EGCG. According to wikipedia 100 ml of green tea contains 70.2 mg of EGCG. I'm drinking 1.5 liters of green tea per day, which means I would get 1053 mg of EGCG and do not need to take supplements? Furthermore, the wiki says >704 mg through beverages is toxic for the liver (uh oh ).

I guess drinking it through the day (spreading it out) is safe enough and there is also probably a difference in how effective it is when taking that amount as a one-shot supplement.

 

[godlovesatrier]

God and you can drink all that and not be throwing up? I wish I had your stomach haha =)

Can't comment on how much is too much, does seem like a lot though.

 

[terry_anova]

Specifically opened an account here because I'm following Joshua's protocol. And to have a place to document things.
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In comparison to many I have mild CFS right now.
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Get some PEM after exercise. Brain Fog. Susceptible to stress and Anxiety, Sore throat, Tinnitus. Cold Sweating.
.
Had chemical sensitivity. Had GI issues. Had Orthostatic issues.
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SO I have EBV Nuclear Antingen-1 IgG +ve EBV Viral Capsid Antigen IgG +ve confirmed, trying to get other HHVs tested. Hopefully I get a Virologist take me seriously. Appointment set for tomorrow.
.
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Minor difficulty completing tasks (was much worse before), am on Adrenal and Thyroid support now and god knows how many supplements.
.
.
.
So Reishi + Oat Bran + Lion's mane basically triggered:
- Sinus congestion
- GI issues returned -colitis
- inflammation along the spine - HLA B27 related
- Headaches, pressure pain behind the eyes
- More irritated throat
- Fatigue
- Body temperature increase
- And more brain fog.
.
These symptoms come and go. Like a tug of war, so far decidely in direction of recovering.
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If I stop Reishi + Oatbran + Lion's mane symptoms disappear and can operate relatively normally.
.
Reishi Extract especially seems especially to flare my throat and cause an increase in sputum, even if I swallow it quickly followed by a liquid. Nothing too serious but annoying.
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Looking forward to Joshua's more powerful triterpenoids
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As a treatment protocol.
-All the stuff in the HASD-ME-pilot-spec_v3.2 however instead of Sodium Benzonaete using LOLA powder.

I've started Spironolactone 25mg daily 16 days - suspicious looking mini boils in my mouth cavity have disappeared, but even now my tongue no longer feels 'sore'

And continued with various other things I am taking right now:
-> Olive Leaf extract 500mg 20% Oleuropein x 2 daily
-> 300mg Monolaurin
-> Isoprinosine 500mg
-> GMAF powder from Saisei pharma
-> Inosine -550mg
-> Corcedyps 750mg (8% Cordycepic Acid - 02% Adenosine) x3 daily
-> Nigella Stavia 2000mg x3 daily
-> L-Lysine x500mg x3 daily
-> BHTx1 daily 128mg
-------------------------------------
To keep my immune system balanced I'm doing peptides:
LL-37 200mcg, TA-1 1milligram, TB-4 750mcg EOD
Thymus extract - 1mg, BPC-157 300mcg, HGH 4IU, HCG 250 IU EOD
(Please don't ask for peptide sources this can be discussed elsewhere)
............................
On a side note I never really liked green tea, it always made me feel weird.

 

[jump44]

Appreciate the post but you’re also on a million other things including hgh and hcg. I’m not really sure how you could possibly know for sure what’s causing what and as powerful as these combinations of supplements are proported to be , those other things have an equally if not more so powerful effect on the system(I know because I’ve done some of them.)

 

[godlovesatrier]

I agree with @jump44 your taking some very powerful and strong things that we've debated before on PR.

It's definitely impossible to know how you can differentiate between any response taking that much at once. Even if you did build it all up gradually.

Also you seem to be saying that your symptoms are slightly worse on the protocol (sore throat etc) than off it. Also do you have a diagnosis of ME or CFS?

Thanks.

 

[joshua.leisk]

I agree with @jump44 your taking some very powerful and strong things that we've debated before on PR.

It's definitely impossible to know how you can differentiate between any response taking that much at once. Even if you did build it all up gradually.

Also you seem to be saying that your symptoms are slightly worse on the protocol (sore throat etc) than off it. Also do you have a diagnosis of ME or CFS?

Thanks.

I think if this influence can be reliably repeated/demonstrated -

If I stop Reishi + Oatbran + Lion's mane symptoms disappear and can operate relatively normally.

then the primary drivers of the immune response are reasonably well indicated.

For context, we heavily explored nigella sativa, monolaurin and olive leaf extract while penning the first paper. We found they had some synergistic effects for assisting immune response around the lytic phase, only.

Monolaurin appears quite useful, however we found chronic nausea was a common complaint, both with/without spironolactone.

Nigella sativa is also rather impressive.

Spironolactone was also used successfully and used to be a key element of the V1,V2 design to manage lytic phase.

Based on the inferred serology data and reports, the combination of these compounds provided a "slow and steady" immune response.

Due to a preference for avoiding prescription medications (which are also off-label use and therefore at this stage require a compassionate doctor), plus the rather remarkable early efficacy shown by the reishi triterpenes, we've removed spironolactone from the draft specification for the upcoming trial, however it's not contraindicated.

 

[joshua.leisk]

I'm not following the protocol yet, just trying to see if it fits my case. Thanks for all the updates.

I was wondering regarding EGCG. According to wikipedia 100 ml of green tea contains 70.2 mg of EGCG. I'm drinking 1.5 liters of green tea per day, which means I would get 1053 mg of EGCG and do not need to take supplements? Furthermore, the wiki says >704 mg through beverages is toxic for the liver (uh oh ).

I guess drinking it through the day (spreading it out) is safe enough and there is also probably a difference in how effective it is when taking that amount as a one-shot supplement.

From my experiences, the EGCG content of green tea has been unfortunately a bit variable. Different strains, different brands, different steeping times, etc.

Some of the the other compounds in green tea also appear to have an opposing effect.. however this is currently unclear / unquantified in the literature.

Ultimately, using a standardised extract appears to be a more reliable approach. There are other factors which increase GDH, so this is somewhat of a moving target, overall.

 

[terry_anova]

Appreciate the post but you’re also on a million other things including hgh and hcg. I’m not really sure how you could possibly know for sure what’s causing what and as powerful as these combinations of supplements are proported to be , those other things have an equally if not more so powerful effect on the system(I know because I’ve done some of them.)

To be fair I didn't state the order in which I started things.
.
So before I started Reishi + Oat bran + Lion's mane I loaded on the other compounds:
.
-> Olive Leaf extract 500mg 20% Oleuropein x 2 daily - 3-4 years taking this, if I don't take regularly my immune system weakens and I start getting colds and fungal infections
I have a history of weak immune response and nasty pneumonia, so my story dates a long time ago. I think carrying a single HLA-B27 gene halotype, is what prevented me from getting much worse disease. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6627668/ https://arthritis-research.biomedcentral.com/articles/10.1186/ar571)

-> 300mg Monolaurin - Loading Phase 1-2 days
-> Isoprinosine 500mg - Then added this 1-2 days
-> Inosine -550mg - Added last 7 days
-> GMAF powder from Saisei pharma - These 3 added together
-> Corcedyps 750mg (8% Cordycepic Acid - 02% Adenosine) x3 daily - These 3 added together
-> Nigella Stavia 2000mg x3 daily - These 3 added together
-> L-Lysine x500mg x3 daily - Started last month, not much of a noticeable effect
-> BHTx1 daily 128mg - 1 year taking this, I never really noticed much of an effect but this was also while taking Olive Leaf Extract
-> LL-37 200mcg, TA-1 1milligram, TB-4 750mcg EOD - With exception of LL-37, I've taken TA-1 and TB-4, with TB-4/TA-1 producing a 'feel good' factor, I think they might be immunomodulatory, I've been taking these before the protocol.
-> Thymus extract - 1mg, BPC-157 300mcg, HGH 4IU, HCG 250 IU EOD - I've also been taking these before the protocol, these seem to help me with energy level and i think the HGH will help replacing cells killed by Apoptosis

The above with the exception of Olive Leaf Extract didn't produce any noticeable changes, even Olive Leaf Extract if you don't pay really close attention you don't realize you aren't getting sick anymore.
.
I have noticed that Corcedyps + Nigella Stavia + GMAF gave me more energy.
.
Another important note is I get plenty of Sun exposure, I make it a point to bathe in the Mediterranean sun daily for 20-40min, and in winter time I take Vitamin D3, I follow this with K2 to avoid calcification of the arteries.
.
To be sure Reishi is creating an effect I had purposely taken half of my Reishi Alcohol extract bottle, my reasoning any reaction I can survive, as I have adequate physical energy buffers. to be sure the effect was slow to appear at first but unmistakable, feeling like run down by a train and a flare up of many old symptoms. The most noticeable is inflammation on my spine, this I thought I managed to heal, just came back like hello I've been here waiting for you.

 

[pamojja]

however instead of Sodium Benzonaete using LOLA powder.

What is LOLA powder?

 

[jump44]

To be fair I didn't state the order in which I started things.
.
So before I started Reishi + Oat bran + Lion's mane I loaded on the other compounds:
.
-> Olive Leaf extract 500mg 20% Oleuropein x 2 daily - 3-4 years taking this, if I don't take regularly my immune system weakens and I start getting colds and fungal infections
I have a history of weak immune response and nasty pneumonia, so my story dates a long time ago. I think carrying a single HLA-B27 gene halotype, is what prevented me from getting much worse disease. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6627668/ https://arthritis-research.biomedcentral.com/articles/10.1186/ar571)

-> 300mg Monolaurin - Loading Phase 1-2 days
-> Isoprinosine 500mg - Then added this 1-2 days
-> Inosine -550mg - Added last 7 days
-> GMAF powder from Saisei pharma - These 3 added together
-> Corcedyps 750mg (8% Cordycepic Acid - 02% Adenosine) x3 daily - These 3 added together
-> Nigella Stavia 2000mg x3 daily - These 3 added together
-> L-Lysine x500mg x3 daily - Started last month, not much of a noticeable effect
-> BHTx1 daily 128mg - 1 year taking this, I never really noticed much of an effect but this was also while taking Olive Leaf Extract
-> LL-37 200mcg, TA-1 1milligram, TB-4 750mcg EOD - With exception of LL-37, I've taken TA-1 and TB-4, with TB-4/TA-1 producing a 'feel good' factor, I think they might be immunomodulatory, I've been taking these before the protocol.
-> Thymus extract - 1mg, BPC-157 300mcg, HGH 4IU, HCG 250 IU EOD - I've also been taking these before the protocol, these seem to help me with energy level and i think the HGH will help replacing cells killed by Apoptosis

The above with the exception of Olive Leaf Extract didn't produce any noticeable changes, even Olive Leaf Extract if you don't pay really close attention you don't realize you aren't getting sick anymore.
.
I have noticed that Corcedyps + Nigella Stavia + GMAF gave me more energy.
.
Another important note is I get plenty of Sun exposure, I make it a point to bathe in the Mediterranean sun daily for 20-40min, and in winter time I take Vitamin D3, I follow this with K2 to avoid calcification of the arteries.
.
To be sure Reishi is creating an effect I had purposely taken half of my Reishi Alcohol extract bottle, my reasoning any reaction I can survive, as I have adequate physical energy buffers. to be sure the effect was slow to appear at first but unmistakable, feeling like run down by a train and a flare up of many old symptoms. The most noticeable is inflammation on my spine, this I thought I managed to heal, just came back like hello I've been here waiting for you.

Ok makes sense Just as an aside/Can I ask how long you’ve been in hcg?is it for testosterone support? I took it years back when my cfs was milder and found it beneficial. Not trying to derail the thread just curious.

 

[Reading_Steiner]

Still doing the protocol, haven't died yet, the weird pain I was having has almost gone it seems. I feel a lot better today and I have no idea why, normally I strain to get going in the morning and frequent bad mood ( only in the past month that is ). I did go back yesterday to using the 'good' green tea that I made, which has more of the chemical in it. I was also cheating though and ate a few sugary chocolate things and a tiny pizza, but that was 24 hours ago.

 

[jump44]

Still doing the protocol, haven't died yet, the weird pain I was having has almost gone it seems. I feel a lot better today and I have no idea why, normally I strain to get going in the morning and frequent bad mood ( only in the past month that is ). I did go back yesterday to using the 'good' green tea that I made, which has more of the chemical in it. I was also cheating though and ate a few sugary chocolate things and a tiny pizza, but that was 24 hours ago.

Pizza cures everything

 

[godlovesatrier]

I continue to have PEM, malaise and fatigue. Even if I do feel better on 75mg egcg (which I started yesterday morning) I feel a bit wired, like the energy isn't clean energy and I'll end up crashing at some point. Feel like I am just in an over stimulated crash cycle, which gets worse the more I do over time. I'm seriously considering giving up this week as it's been 15 days so far. I think the science may be pretty good on the whole, but if a person has other pathways that are behaving oddly, the protocol is unlikely to cater for that too.

After my experience with the life extension green tea I went back to the wells pharmacy green tea and I've been ok on that one. But if anything the higher dose of EGCG makes the fatigue and PEM worse - I seriously wonder if this is due to the caffeine and theanine content?

 

[jump44]

I continue to have PEM, malaise and fatigue. Even if I do feel better on 75mg egcg (which I started yesterday morning) I feel a bit wired, like the energy isn't clean energy and I'll end up crashing at some point. Feel like I am just in an over stimulated crash cycle, which gets worse the more I do over time. I'm seriously considering giving up this week as it's been 15 days so far. I think the science may be pretty good on the whole, but if a person has other pathways that are behaving oddly, the protocol is unlikely to cater for that too.

After my experience with the life extension green tea I went back to the wells pharmacy green tea and I've been ok on that one. But if anything the higher dose of EGCG makes the fatigue and PEM worse - I seriously wonder if this is due to the caffeine and theanine content?

Do you possibly have any other circumstances like mold for instance ? I live in a mold ridden apt that im
Currently working on extricating myself from in the next month. Just thinking of things that could *possibly* interfere with this. I’m not sure it even would but just throwing it out there.

 

[joshua.leisk]

What is LOLA powder?

L-ornithine L-aspartate (bulk supplements)

We used it in v2.x for a while - it's useful for rapidly making urea from ammonia and hopefully excreting it, with sufficient water. As an aside, the aspartate can be used to create GABA in the retinae, when dopamine is also low.

 

[godlovesatrier]

Do you possibly have any other circumstances like mold for instance ? I live in a mold ridden apt that im
Currently working on extricating myself from in the next month. Just thinking of things that could *possibly* interfere with this. I’m not sure it even would but just throwing it out there.

Hi,

Sadly not, moved 6 months ago to a 5 year old new build house. Super dry and definitely no mold. I just don't think all the pathways are likely to be noticed yet and without a way to test for it, it's tricky to know the exact modality. Even so I am giving it a go for a few more days and won't dump the whole protocol, I'll just remove the bits that don't seem to be doinge me much good, egcg, extra vitamins, stuff like that.

Frustrated obviously, wanted it to work, but I just feel like all the symptoms are pushed to the background, or I wake up feeling worse than the night before most of the time.

Forgot to add the Taurine didn't work for me, it just woke me up, had to take some nytol to cancel out the Taurine stimulation. Took 1000mg.