ME/CFS Research: Herpes Autoimmune Spectrum Disorder

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joshua.leisk

Joshua Leisk (Researcher)
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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?

I'll see if I can help debug -

So in the model - the 2 key levers are a-KGDH vs GDH.

a-KGDH is impaired / reduced by ROS.

R-ALA is one of the most important inclusions in the protocol around ROS management. The protocol calls for multiple doses per day. I don't believe you've been taking R-ALA owing to nausea? This may mean your a-KGDH is fluctuating or impaired.

GDH is increased by viral alterations.

The reishi + EGCG dose are the current key inclusions to managing the GDH.
I don't think you've been keeping up the EGCG dosing due to nausea? This may mean your GDH is fluctuating or high.

I think the nausea you've mentioned is likely the same nausea that people often report in the early days, which usually coincides with any intense liver immune response. Most people report it coming and going for perhaps 3 days.

Fatigue and dizziness are also expected during the hepatic immune response phase. I don't believe anyone has avoided these symptoms of immune response yet. :)

Most people report being in bed wiped out for at least one week, after the initial onset of fatigue / dizziness. It's suggested in the draft spec to allow for perhaps 2 weeks away from current life.

I'd advise anyone that is considering self-experimenting with this research protocol that following the draft specification as strictly as possible will give the most reliable results. Where specific products have been named, using those products would be advisable. I'm also happy to eyeball products, where people are curious about compatibility.

One key aspect in the treatment design is also expecting (and making time) to experience (possible/probable) nausea, and (almost certain) fatigue, dizziness, inflammation, flu symptoms, nerve pain.. basically every infected cell being consumed by your immune system and replaced. It's not an enjoyable process and will test your patience, at the very least. Some painkillers like ibuprofen may be helpful here.

In the model, avoiding these immune symptoms by reducing or suspending dosing means that you're delaying the process and depending on the products you're not dosing, may end up incurring / continuing PEM.

eg. The lions mane and oat-bran derived beta-glucans can be temporarily suspended to reduce an immune response with minimal issues.

Everything else in the protocol needs to be maintained to prevent crashing, owing to their effects relating to the 2 enzymes mentioned above.

Regarding products - the reishi product quality variances are an ongoing, but partially-resolved problem - I'm currently in discussions with a number of reishi vendors and some labs around further testing. The USP report on reishi being faked / inconsistent has been echoed by some of the vendors I've been chatting to over the last few weeks.(https://www.realmushrooms.com/usp-say-reishi-products-not-authentic/).

In the meantime we're creating a list of 'known good' reishi products. The Life Extension product has been very consistent. I'm currently considering this to be the standard I'm comparing other products to, for now.

:)
 

godlovesatrier

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I would say the reishi life extension extract is really good, same with the TIME Lions Mane ultra strength pack. No issue with those for sure.

Don't know what the purity difference is between life extension green tea and Wells Pharmacy green tea. THe life extension extract looks almost pink, the Wells Pharmacy one is a dark colour (looks more like tea). But obviously that doesn't help denote potency or anything.

I've added the R-ALA back in for the time being anyway (added back in thismorning owing to ROS conversations), I guess I can continue to monitor PEM and fatigue over the next week or so to see if it improves as a treatment biomarker (so to speak!). I've been taking 75mg egcg since the morning of the 23rd, I had an 18 hour break on egcg while I recovered from the vomiting I had at the 25mg dose from the life extension brand.
 
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jump44

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definite liver weirdness and face feels hot after upping oat bran and full dose reishi today. Liver feels as if I went out drinking last night lol. Guess it’s a sign of something. Not pleasant . Spine also feels “inflamed”. Very strange but aligns with what’s been said before.
 
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Definitely experienced the spine inflamation especially near the top. Glad your having an expected reaction.
definite liver weirdness and face feels hot after upping oat bran and full dose reishi today. Liver feels as if I went out drinking last night lol. Guess it’s a sign of something. Not pleasant . Spine also feels “inflamed”. Very strange but aligns with what’s been said before.
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Uncanny I'm getting this spinal inflammation as well.
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Headpressure and headache. Pain behind the eyes. General Fatigue. Heat flushes. Variable brain fog. Irritation in throat seems to be abating. Irritation in tongue gone.
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Liver doesn't seem too burdened but tbh it's well supported TUDCA, Glycine, B-Vits, Choline, Liver extract, Milk-Thistle, etc...

@jump44 HCG btw to maintain T levels, especially to counteract Spironolactone effects
 

godlovesatrier

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Are you on the protocol as well @themjay ? I can't remember everyone who is and is not on it.

I used to get a lot of eye pain/aching when I started taking andrographis which is a very strong anti viral traditional remedy, but after using that and combining it with a load of other traditional anti viral remedies I haven't ever had that return really. I would say I;ve experienced it on this protocol but only mildly. When I say return I mean it's been hard to repeat the immune response that I first had when I first took traditional remedy anti virals.
 
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@godlovesatrier I have been having recurring uveitis for a year now so am unable to take the mushroom products. I just can't get the pain and neuropathy under control so am very reluctant to provoke more immune activity. However I am very interested in your self-experimenting.
 

godlovesatrier

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Ah yes I've seen a few people talking about that and that it was problematic. This disease certainly seems to do more damage over time, sorry you've got to deal with that. I've had sharp nerve pain in the past taking various traditional remedies but with this have not really experienced any which is good. Hopefully some of us will be able to get some benefits from this. Take care.
 

BrightCandle

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Day 12

On Day 10 I was feeling good, energy levels seemed much improved and I exercised without PEM and most of my symptoms had dissipated. I seemed mostly to still just be dealing with joint issues. I started the GI recovery aspect of the programme with prebiotics, probiotics and introduced of the 4 foods, all of which I am intolerant to.

Lots of GI and liver bloating, headaches, pressure, brain fog, sleeping through the day and struggling to sleep through the night and temperature fluctuations. Big headache, feel terrible but I don't necessarily feel sick, I feel like my ME when its worse.

Feeling properly rubbish and in pain at the moment and had to take some anti constipation meds to try and get my bowels moving again, it does not like rice! Not much fun today, this phase is as predicted all be it a little late and it needed the foods to kick me off.
 

joshua.leisk

Joshua Leisk (Researcher)
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232
Location
Sydney, Australia
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Uncanny I'm getting this spinal inflammation as well.
.
Headpressure and headache. Pain behind the eyes. General Fatigue. Heat flushes. Variable brain fog. Irritation in throat seems to be abating. Irritation in tongue gone.
.
Liver doesn't seem too burdened but tbh it's well supported TUDCA, Glycine, B-Vits, Choline, Liver extract, Milk-Thistle, etc...

@jump44 HCG btw to maintain T levels, especially to counteract Spironolactone effects
I'll be talking about hormones in a big post shortly and in the next paper. They have a large role in this disease model. The androgen receptor antagonism by spironolactone is very useful in this context.
 

joshua.leisk

Joshua Leisk (Researcher)
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232
Location
Sydney, Australia
I always get headaches, top of spine pain and eye pain/uveitis when I take reishi/lions mane.

I know I mentioned this much earlier but I have found the blog by the German researcher a few years ago that maybe of interest:

http://meversuscfs.blogspot.com/

https://forums.phoenixrising.me/thr...n-treating-icc-me-with-antiretrovirals.60633/

@godlovesatrier I have been having recurring uveitis for a year now so am unable to take the mushroom products. I just can't get the pain and neuropathy under control so am very reluctant to provoke more immune activity. However I am very interested in your self-experimenting.
Thank you! I'll check these links out. :D

What you've described is the paradox - the pain / headaches / inflammation is caused by the immune response, rather than the infection itself. Therefore, if you didn't trust that the process was effectively solving the issue, you'd avoid going near it as part of normal pain-avoidance behaviour and sanity preservation.

The key issue is that the infected cells are still happily replicating in the background via latent transcytosis and lytic phase activity (the latter triggers an immune response, the former doesn't). This is why HSV-1/2 causes lesions by lytic activity - the immune system detects the activity and attacks the cells. This causes pain and inflammation.

The game-changer here is the triterpenes and beta-glucans.

The triterpenes allow the immune system to "see" the "hidden" latent cells - which they normally cannot. Those infected cells signal for apoptosis, so when WBC, etc inspect them, they get consumed and replaced.

[ Imagine the "joy" (pain) you'd normally experience when your immune system attacks a smaller number of lytic cells... and then imagine what happens when suddenly all of the latent cells are subject to the same process, too. Now imagine how many latent cells there are, after decades of silent replication throughout the host... ouch. The longer the infection has persisted, the more inflammation / immune remediation work is needed. ]

This immune activity is metabolically quite costly and normally not something the body will actively sustain unless provoked. Beta-glucans from lion's mane and oats, etc provoke a sustained, intense immune response.

Suspending dosing the beta-glucan sources only can provide a temporary suspension of the intense immune response.

The combination of these two aspects is very, very effective by all reports. I'm hearing that ibuprofen is useful for most people (unlike other pain killers) and topical lignocaine is very impressive for people with serious VZV / HSV-1/2 infections. Those people report a LOT more inflammation, pain, etc - and since it's largely nerves being remediated... it's really, really unpleasant.


Day 12

On Day 10 I was feeling good, energy levels seemed much improved and I exercised without PEM and most of my symptoms had dissipated. I seemed mostly to still just be dealing with joint issues. I started the GI recovery aspect of the programme with prebiotics, probiotics and introduced of the 4 foods, all of which I am intolerant to.

Lots of GI and liver bloating, headaches, pressure, brain fog, sleeping through the day and struggling to sleep through the night and temperature fluctuations. Big headache, feel terrible but I don't necessarily feel sick, I feel like my ME when its worse.

Feeling properly rubbish and in pain at the moment and had to take some anti constipation meds to try and get my bowels moving again, it does not like rice! Not much fun today, this phase is as predicted all be it a little late and it needed the foods to kick me off.

Here's my personal update -

Started on the LEF reishi two days ago.

About 18 months ago, my left leg (vastus lateralis) got inflamed from an infection and I grew what appeared to be a 3rd knee. I went to a local doc, who gave me a script for cipro.. which I decided I’d keep for a bigger emergency, or a last resort and try to soldier through the leg pain. It went down over a week.

On the first night of LEF reishi, that same muscle got inflamed again.

The next morning, I was feeling mildly sick, fatigued and dizzy. Dropped my daughter to school and got "hit by a tonne of bricks". I got stuck in my car - dizzy, wiped out and sleepy. I couldn't drive home in that condition.. so I waited for a while, trying to figure out if it would pass, or whether I should try walking home, or get an Uber and get the car later.

The major dizziness and fatigue lifted after about 1.5 hours and I managed to continue with my day.

In the evening, I got a solid headache.

This morning, the left leg inflammation is better. My headache is much better, however I now have some neuritis in my left eye.

On the assumption this is thanks to the reishi and based on this response, I've increased my doses. Let's see where this rabbit hole goes. :D

Now I've been on "an hero" doses of raw reishi powder, lions mane and oats for over a month and only saw some minor immune activity in the beginning.

reishi.jpg

Here's a comparison between the raw reishi powder (left) and the LEF reishi extract (right).

The raw powder (left) tastes a bit "nutty" or "wooden" and slightly bitter. The alcohol extract (right) tastes like bitter dark chocolate. For science, I emptied a capsule into my mouth and I was concerned it actually was dark chocolate. Consequently, I've started adding this to my morning coffees and enjoying it.

Continuing our collaborative efforts to better understand the contents of reishi products available, some of my new favourite people have been contributing their research and photos -

reishi_s1.png


reishi_s2.png


and

reishi_r1.png


reishi_r2.jpg


reishi_r3.jpg


.. so already we can see a huge variation between various reishi products.

Different parts of reishi have different colours and different triterpene content.
https://www.ncbi.nlm.nih.gov/books/NBK92757/table/ch9-t1/?report=objectonly
(from: https://www.ncbi.nlm.nih.gov/books/NBK92757/#!po=0.381679)

Ganoderma_lucidum_01.jpg


The spores and the fruiting body contain the most triterpene content.

Overall, this creates a significant problem for ensuring that you're buying a product that contains sufficient triterpenes to provide the desired physiological response.

https://www.realmushrooms.com/usp-say-reishi-products-not-authentic/

The basic tests (and I'm organising independant lab tests for a wide range of reishi products) are - needs to be alcohol extract, dark, bitter and taste like cacao. At this stage, only a couple of products meet this initial criteria.
 

godlovesatrier

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Be really interesting to know what that TIME Reishi spore one is like. Someone was going to try that brand, cannot for life of me remember who. Hopefully if there watchign this thread they can post back an update.

Are you doing a lab test for LFE Reishi? Or no need do you think?

Cool post thanks!
 

pamojja

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The game-changer here is the triterpenes and beta-glucans...

On the first night of LEF reishi, that same muscle got inflamed again.

I'm in the fortunate place of already having experienced remission from PEMs 2 years ago through comprehensive supplementation and life-style changes. However, I'm still not at normal energy level yet, and still have, though reduced, still excessive sleeping needs.

Therefore without access to any viral testing, I suspect high triterpenes and beta-glucan intake could serve as a diagnositic to detect still smoldering infections? - As it did in your experience above too?
 
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@joshua.leisk I understand what you are saying, but whenever I try any of these protocols I get severe uveitis which has sent me to the emergency eye department 4 times in the last 8 months - this is a sight threatening condition, requires a heavy dose of harmful steroids to resolve and has left me with what seems like permanent pain as a result as confirmed by a rheumatologist. I have severe M.E (diagnosed) for 20+ years so I acknowledge that I maybe different to some. Interestingly years ago when I took Takuna I had a similar reaction, but in the other eye. Many reviews of mushroom products mention headache.

@godlovesatrier I have tried the TIME spores. They taste very mild - I was expecting bitterness. I queried this with them and then assured me they were from a trusted source. If you want very bitter powder, you could try the Navi one: their stuff is always very good.

https://www.naviorganics.uk/product...pene-crystals-supercritical-extraction-powder
 

BrightCandle

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I am using the Time Reshi spores. Today I feel like I have just woken up after a night drinking, all that pain and suffering for 2 days and now I feel hung over. This has happened 3 times now, 1-2 days of getting worse and then my body backs off, I will likely feel great tomorrow. Definitely the worst one so far yesterday was pretty unpleasant. I don't know what that says about the effectiveness of the Time spores and their 30% Triterpenes .
 

godlovesatrier

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@godlovesatrier I have tried the TIME spores. They taste very mild - I was expecting bitterness. I queried this with them and then assured me they were from a trusted source. If you want very bitter powder, you could try the Navi one: their stuff is always very good.

https://www.naviorganics.uk/product...pene-crystals-supercritical-extraction-powder

Ah damn really? Ok well won't waste my money on that, the LFE one does seem decent based on what @Reading_Steiner and others have said. I guess we will have to keep our eyes peeled for another one. Saying that the navi one does look good too!

I've lowered my carbohydrate intake (in the morning meal) to tiny levels just to see how it effected me. Initially did get a bit of a keto flu reaction, but my body seems to have picked up and used the extra protein now which is good. Won't do full keto because I've got infections too many times on that diet, but lower carbs (to a limit) always made me feel better hence why I am trying to reduce it a wee bit.

Might also try an egg scrambled at lunch.
 

godlovesatrier

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I am using the Time Reshi spores. Today I feel like I have just woken up after a night drinking, all that pain and suffering for 2 days and now I feel hung over. This has happened 3 times now, 1-2 days of getting worse and then my body backs off, I will likely feel great tomorrow. Definitely the worst one so far yesterday was pretty unpleasant. I don't know what that says about the effectiveness of the Time spores and their 30% Triterpenes .

Thanks for the info on the TIME stuff. Maybe it is working then, but hard to know if you're body is just adjusting all pathways plus the GDH inhibition at this point.

How much EGCG do you take per day? and is your PEM fully blocked yet?
 
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