ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[joshua.leisk]

Yep I definitely continue to feel very tired and drawn. Spent most of the weekend in bed just resting. Definitely an immune response. Wasn't sure initially but it definitely is now. Sleep had improved tho and I don't feel as energised in the evenings. Which might be why sleep is better.

If it's anything like the protocol I did in 2018 I should get an energy boost in a few weeks.

I'm really not sure if the egcg is doing what it's meant to do though. But an oat test should help figure that out.

Sounds pretty similar to many of the journeys I've observed.

If it was me, I might try increasing EGCG from 25mg to 50mg or higher.

If I thought my GDH was higher than previous participants for any of the variables mentioned earlier (I'm still building a comprehensive list of drug and other influences for GDH), then a higher EGCG dose may compensate for this. It's a personal balance.

25mg + reishi has been reliable for most people, however this is still n=<40 and very early days.

Some testing for this could be nice. Closest I can find for this could be to do a serum C.diff test, which looks at GDH. If the lab ranges on this report are sensitive enough, this could be a direct way of quantifying the EGCG dose needed, per individual.

The most common experience timeline is "tissue inflammation in previous problem areas", which seem to disappear in a few days, "tired", "woozy/dizzy", then "liver pressure", followed by "I'm so sick, I can barely get out of bed. I feel like a truck hit me."

This isn't consistent - some people get "hit by a truck" on day 1/2/3. The immune response isn't predictable. From early data, the duration for the "truck hit me" phase appears to correlate to eg. EBV VCA, EBNA IgG titres, which is nice.

 

[godlovesatrier]

Yeah I definitely can't spend the couple of hundred pounds it would cost to get those tests but I do know a place I can get them locally

Thanks for your thoughts on the egcg.

Hopefully the gdx oat test will be useful. I'll have to order that soon.

 

[godlovesatrier]

I did increase egcg to 50mg but didn't really notice much, however I did buy a new kind of green tea extract which might be more potent.

 

[Mrparadise]

@joshua.leisk May I ask you how many people with CFS felt better or even went into remission after sticking to your protocol?

 

[pamojja]

I take this text from your paper to mean the beta-glucan content of lion's mane isn't known or too variable?

Beta-glucans - there are different types and it’s not clear which ones are the most effective for stimulating the immune response. We’ve found the mix of beta-glucans from lions mane, reishi and oat bran to be highly potent / potentially overwhelming. It may be that eg. a straight beta-glucan supplement, which is usually derived from yeast, could be equally effective, however this is currently untested.

LIONS MANE (beta-glucans) | https://timehealth.co.uk/product/lions-mane-capsules-polysaccharides/
Additional beta-glucans | https://de.iherb.com/pr/Now-Foods-B...r-Extra-Strength-250-mg-60-Veg-Capsules/35770

I'm still stuck with the question, how much of which kind of beta-glucan are actually needed? How much one actually gets with lions-mane powder? (so one can assume a comparable amount in a for beta-glucan standardized extract)

3 g/d Oatbran at 10% would contain 300mg beta-glucans. So the yeast beta-glucan with 250mg would have its capsules divided like the EGCG capsules too. If anyone tries this, please report back.

This article mentions: https://examine.com/supplements/lionsmane/research/#sources-and-composition_composition

The mushroom Lion's Mane (Hericium erinaceus) contains:

• Hericenones A and C-H[5][6][7]
• Erinacines A-K[8][9]
• Orcinol derivatives (Mycelium)[10]
• Sialic-acid binding lectin[11]
• Sterols, such as ergosterol and beta-sitosterol.[12]

And a polysacchaide component (Hericium erinaceus )

• Polysaccharides, named HEF-P and belonging to the beta-glucan family; which can be broken down into four polysaccharides[13][14][15] The percentage of polysaccharides in the fruiting bodies seems to be around 20%, with 18.59% found with an ethanol extraction[15][16] with the overall structure of these polysaccharides comprising xylose (7.8%), ribose (2.7%), glucose (68.4%), arabinose (11.3%), galactose (2.5%) and mannose (5.2%).[17]

At about 19% beta-glucans 750 mg/d lions mane powder would contain at the most 140 mg of lion's mane beta-glucans. Though one could interpret this text to indicate most polisaccharides in lion's mane are actually beta-glucans - how much of it still isn't really clear. Something between 70 to 140 mgs?

And if that is true, wouldn't a for polisaccharides standardized lion's mane extract not also contain at least half of it as beta-glucans?

 

[Reading_Steiner]

@joshua.leisk May I ask you how many people with CFS felt better or even went into remission after sticking to your protocol?

He sort of said earlier on in the thread or possibly in another thread, he showed a short video that one of them had sent him of being able to walk through the woods at what seemed like high speed. I can't imagine that anyone would create such a video for any other purpose lol. Sounded like there were at least 2 or 3 people that responded, of course we had no proof that those people even existed or that they actually had a disease that would meet diagnostic criteria for me/cfs. We just had to trust what he was saying. In my case everything has turned out exactly as he described it would so far. He said recently n<=40 but that probably means people who have tried it, not succeeded. It does cost a good bit of money, but its hard to think of something that could be a better use of money.

It seems like this is a 'world first' achievement, describing the complex biological mechanisms that can cause a mysterious disease which many uninformed or wilfully corrupt people still say is psychological in origin, and proof of the theory by experimental results, of course only a few of us are picking up on it and its not been widely publicized. How often is it that patients get to interact directly with the top scientists in any medical field ? especially in an informal setting.

 

[jump44]

I unfortunately think I’m allergic to reishi or something weird. I took my 3rd dose Saturday evening and my face blew up like crazy , like legit two times normal size. A lot of underarm sweating and some itching. I didn’t take it yesterday but took the rest of the components and actually felt better and had more of the expected “immune response “ in the afternoon. The reishi feels like it’s hyping my system up and I hadn’t had the “mono type symptoms”. Idk what to think. I know it could be a bad batch of reishi but it was really weird. Are there any other herbs/ supplements etc that contain the prerequisite triterpine? The protocol is definitely doing things for me but i intuitively feel like my body does not like the reishi and Saturday was not an immune response in the way we are looking for. it felt like straight up allergy or acute hormonal response that was very unpleasant.

 

[pamojja]

If it was me, I might try increasing EGCG from 25mg to 50mg or higher.

Also, since I already take 337 mg of EGCG in one casule (LEF) on empty stomach in the morning, half-life seems to be ~5 hours and therefore taken trice a day, could it be disadvantagous to just divide such a capsule in 3 parts, and thereby getting a trice as high dose as needed on the maintainance protocol?

Would Jiaogulan Ext. with the Reishi alcohol extract be counterindicated?

I unfortunately think I’m allergic to reishi or something weird. I took my 3rd dose Saturday evening and my face blew up like crazy , like legit two times normal size.

Sorry if already mentioned, but which product you used? Some come with many additives which too could cause allergic reactions.

 

[jump44]

Also, since I already take 337 mg of EGCG in one casule (LEF) on empty stomach in the morning, half-life seems to be ~5 hours and therefore taken trice a day, could it be disadvantagous to just divide such a capsule in 3 parts, and thereby getting a trice as high dose as needed on the maintainance protocol?

Would Jiaogulan Ext. with the Reishi alcohol extract be counterindicated?



Sorry if already mentioned, but which product you used? Some come with many additives which too could cause allergic reactions.

It’s host defense alcohol extract. According to the label ot has no other ingredients besides the reishi and alcohol.

 

[godlovesatrier]

You could just be allergic to it @jump44 . I keep having asthma episodes (not air hunger) but they are random and it's not every single day. But I do suspect it's a reaction to what I am taking. At any rate I wouldn't be surprised, we seem to get histamine reactions more easily than healthy people anyway right? So might make sense.

I am definitely having an immune response now though, must be my third or fourth day of it. My blog on PR has all the details. Some symptoms have waxed and waned, but the immune response has remained.

 

[jump44]

You could just be allergic to it @jump44 . I keep having asthma episodes (not air hunger) but they are random and it's not every single day. But I do suspect it's a reaction to what I am taking. At any rate I wouldn't be surprised, we seem to get histamine reactions more easily than healthy people anyway right? So might make sense.

I am definitely having an immune response now though, must be my third or fourth day of it. My blog on PR has all the details. Some symptoms have waxed and waned, but the immune response has remained.

Thanks for the response. Nice to hear it’s doing things for you too. I can’t afford to continue to let my life pass by in a passive position waiting for a miracle from researchers etc, so at the very least it feels good to be taking action even if this doesn’t end up being the full answer.

Yeah I’ve definitely had histamine problems throughout my illness. I do overall feel better(especially mentally with better clarity) and have had times of increased immune activation that led to tiredness that somehow feels much more “normal” than regular cfs fatigue(only someone w cfs can possibly know what this means haha). The diet seems to have eliminated my post meal crashing where I’d eat and have no choice but to lay down. So there are some promising signs. I hope there’s a workaround for the reishi thing.

 

[godlovesatrier]

Yep I would agree, overall pretty good so far. I remain skeptical purely because I've been here before, but if it can get me back to where I was 18 months ago, even that would be terrific. Generally in the past I've been able to feel a clear down throughout my body finishing with my head that's allowed me to get to about 80% but no further. So I'm excited at least to give this a go and see how far it will take us all.

Lower carbs definitely helps with that. I think I noticed huge differences with wheat (which I very rarely eat) when I added thiamine into my regime about 4 weeks ago.

But yes the mast cell thing seems common and an odd extra factor. Good luck to us all

 

[Reading_Steiner]

I unfortunately think I’m allergic to reishi or something weird. I took my 3rd dose Saturday evening and my face blew up like crazy , like legit two times normal size. A lot of underarm sweating and some itching. I didn’t take it yesterday but took the rest of the components and actually felt better and had more of the expected “immune response “ in the afternoon. The reishi feels like it’s hyping my system up and I hadn’t had the “mono type symptoms”. Idk what to think. I know it could be a bad batch of reishi but it was really weird. Are there any other herbs/ supplements etc that contain the prerequisite triterpine? The protocol is definitely doing things for me but i intuitively feel like my body does not like the reishi and Saturday was not an immune response in the way we are looking for. it felt like straight up allergy or acute hormonal response that was very unpleasant.

its not the alcohol in it is it ? I don't enjoy the ones with alcohol although it doesn't cause a strong allergy. Thats part of why I switched to LE capsules, also I couldn't tell how much of the active ingredient I was drinking before.

 

[jump44]

its not the alcohol in it is it ? I don't enjoy the ones with alcohol although it doesn't cause a strong allergy. Thats part of why I switched to LE capsules, also I couldn't tell how much of the active ingredient I was drinking before.

I tend to doubt it, the amount of alcohol is really minuscule and I’ve never had this reaction to alcohol in my life. I guess to be totally sure I could order the lef product and test it out. Although I am hesitant because whatever it was has stopped since stopping the reishi two days ago and it was not pleasant.. I didn’t “feel bad” like I was in trouble but I was anxious and my face looked like a watermelon lol and I was sweating like crazy for hours. It felt hormonal or allergic in nature.

 

[joshua.leisk]

I tend to doubt it, the amount of alcohol is really minuscule and I’ve never had this reaction to alcohol in my life. I guess to be totally sure I could order the lef product and test it out. Although I am hesitant because whatever it was has stopped since stopping the reishi two days ago and it was not pleasant.. I didn’t “feel bad” like I was in trouble but I was anxious and my face looked like a watermelon lol and I was sweating like crazy for hours. It felt hormonal or allergic in nature.

The expectation from reishi is that any problem tissues (including areas that flare up with allergies) will become inflamed during the process.

The concept is that these tissues are infected and the reishi is allowing an immune response to remediate this.

It’s not pleasant, at all.

Everyone who pushed through has noticed these problem areas subsequently no longer flare up, suggesting the earlier “allergic responses” were a legitimate, but incomplete immune response.

In our model, reishi’s triterpenes allow those cells to signal for apoptosis, so over the course of the treatment (and some acute inflammation), progressively less infected cells remain.

 

[joshua.leisk]

@joshua.leisk May I ask you how many people with CFS felt better or even went into remission after sticking to your protocol?

Bearing in mind that this relates to very early data, so please take this with a grain of salt.

A small number of people started a few months ago with v1.x, v2.x and they responded predictably - symptomatic remission was reliably demonstrated. Conversely, there were a couple of people who responded predictably to key aspects of the 2.x protocol, yet did not achieve remission.

This suggested there were some complications which needed further investigation and raised questions about what variables weren't accounted for: co-infections, dietary adherence, medication interactions, gut microbiome, etc. Current data is looking like most of this related primarily to medications / diet and we are somewhat moving forward, although there are limitations around medications and timelines / processes for discontinuing.

My focus is now largely on creating a comprehensive list of medications that may interact with the pathways being remediated by the protocol, for people to perhaps discuss with their doctors (and also as exclusion criteria for the upcoming trial.)

(On a semi-related topic, we've also been testing some ideas about how the benzo withdrawal experience can be improved, with early success.)

Since 3.x protocol was drafted, many more people have recently started self-experimenting. At last count, 27 people were at "feeling better" or "responding predictably" (ie. they feel a mix of some symptomatic relief at the same time as being horribly "sick" / seeing acute immune response in previously observed problem tissues, including the liver, GI tract, neck, face, distal tissues). We've also been monitoring people who are self-experimenting with other diseases mentioned in the papers with high success rates. Aline has volunteered to start compiling the raw data into formal reports.

9 people are reportedly in remission. 6 of them via the v3.x protocol, which is largely based on correcting the impaired immune response.

Unlike symptomatic remission from 2.x protocol, the timeline of the 3.x journey is more variable. The best progress through the "mono revisited" phase was 11.5 days. I've seen one "severe" person take about 3.5 weeks. Their EBV titres were.. "impressively horrible". It's very much too early to say how long it may take to eliminate all infected cells, or if this is even possible.. yet. I have some unpublished ideas around how this could be improved. I'm currently happy with the rate of immune response being reported by people using the reishi triterpenes and beta-glucans combination. Symptomatic remission of the main CFS issues appears to follow the "mono revisited" phase reliably, where the protocol is also being strictly observed.

The 4 remaining people who had partial responses are still a WIP and we're making some further progress in getting a complete understanding of their additional variables.

Overall, this is very exciting.

 

[joshua.leisk]

Also, since I already take 337 mg of EGCG in one casule (LEF) on empty stomach in the morning, half-life seems to be ~5 hours and therefore taken trice a day, could it be disadvantagous to just divide such a capsule in 3 parts, and thereby getting a trice as high dose as needed on the maintainance protocol?

Would Jiaogulan Ext. with the Reishi alcohol extract be counterindicated?



Sorry if already mentioned, but which product you used? Some come with many additives which too could cause allergic reactions.

The EGCG dose is highly specific. If someone is taking too much EGCG, they'll have a period where GDH is completely impaired. This prevents all reactions between aKG<->glutamate. While this is helpful for preventing any additional nitrogen creation during this period, too much of this may also prevent necessary tissue repairs and mTOR. This could lead to skin / gut barrier issues which perpetuate ongoing mast cell issues, allergies, etc.

Alcohol - this is a sensitive one. In our model, owing to disturbances with some enzymes, the body will have trouble metabolising alcohol and DHT (contributing to the endocrine problems - low LH/FSH, high DHT in males, etc.)
https://en.m.wikipedia.org/wiki/3α-Hydroxysteroid_dehydrogenase
https://en.m.wikipedia.org/wiki/Aldo-keto_reductase

Jiaogulan - looks really good, however untested at this time.

 

[joshua.leisk]

I'm still stuck with the question, how much of which kind of beta-glucan are actually needed? How much one actually gets with lions-mane powder? (so one can assume a comparable amount in a for beta-glucan standardized extract)



3 g/d Oatbran at 10% would contain 300mg beta-glucans. So the yeast beta-glucan with 250mg would have its capsules divided like the EGCG capsules too. If anyone tries this, please report back.

This article mentions: https://examine.com/supplements/lionsmane/research/#sources-and-composition_composition



At about 19% beta-glucans 750 mg/d lions mane powder would contain at the most 140 mg of lion's mane beta-glucans. Though one could interpret this text to indicate most polisaccharides in lion's mane are actually beta-glucans - how much of it still isn't really clear. Something between 70 to 140 mgs?

And if that is true, wouldn't a for polisaccharides standardized lion's mane extract not also contain at least half of it as beta-glucans?

We generally start with 1/4 teaspoon of oat bran x 3 and work up to a tablespoon x 3, alongside the lions mane.

There are different compounds in each beta-glucan source and I don't have enough data to suggest if eg. the Lion's Mane is optional and if the beta-glucans in oat bran alone would be sufficient. What I have seen is that a high dose of each is unpleasantly potent and useful. Oats are quite incredible.

I'd personally be aiming to dose these 2 as high as possible and get through the acute immune stage as quickly as possible, but that's possibly because I lack middle gears on some topics and also possess a low tolerance for "wasting" excess time being sick in bed. My philosophy is to "get it over with as quickly as possible'.

..Probably an artefact from my old CFS days.

PS. The supplement table you included was from 3.1 - I hope you've seen the dietary advice clarified in 3.2?

 

[godlovesatrier]

Thanks for all the info Josh very interesting update. Do the numbers include PR numbers or only those who've officially singed onto your trial?

What percentage did the water fast Vs the food fast method?

 

[joshua.leisk]

Thanks for all the info Josh very interesting update. Do the numbers include PR numbers or only those who've officially singed onto your trial?

What percentage did the water fast Vs the food fast method?

Yes, it’s early, but highly exciting. Definitely makes me feel happy about (so far) being the primary sponsor for the trial.

Those numbers are from multiple sources. I think only 3 people have reached out to me privately from PR over recent weeks.

One of them is on a feeding tube and is starting in about a week.

Another is already in remission. I’ve asked them to write a blog, which they seemed very happy to do.

The other person is just starting now.

I also do a lot of offline/direct consulting here in Aus (free for CFS people) and people also contact me via the website, reddit and discord.

It’s been a little busy.