ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[godlovesatrier]

@joshua.leisk Thank you, as you may know the lack of data around patients in general is a real pain with this disease, so that's the only reason I asked. Helps to build up a general picture.

You're saying you believe spironolactone is the wrong approach?

 

[godlovesatrier]

Strict paleo made me very ill, this was in my second year of ME. Still semi convinced that it impacted my immune system so badly I just ended up getting my first bacterial throat infection. I had another of these infections last year but that one was also combined with ebv. @Martin aka paused||M.E.

 

[joshua.leisk]

@joshua.leisk Thank you, as you may know the lack of data around patients in general is a real pain with this disease, so that's the only reason I asked. Helps to build up a general picture.

You're saying you believe spironolactone is the wrong approach?

v2.x + spironolactone is "OK". Just not as elegant and a much slower journey to full recovery.
(I never did update 2.3->2.4 on RG, as we jumped to 3.0 with the understanding from the third paper, however I simplified / refined some things from v2.3 and the LOLA dose we were considering using there was taken from published data that appears to be a lot higher than needed.)

 

[godlovesatrier]

Thanks for the reply

 

[joshua.leisk]

Thought I was better, so continued with exercise, and then forgot to take two rounds of supplements (EGCG, LOLA, etc.....) have crashed not extreme but wokeup inflamed, dazed, blocked sinus, inflamed spine, headache and unfocused. Definitely not in a good mood.

I wouldn't be using succinate in v3.x as it'll increase ROS in the same way that high GDH does.

10g of BCAAs and a lot of water is reportedly helpful to help quickly pull someone back out of a minor "crash".

 

[joshua.leisk]

Thanks for putting this together Josh. Really interested in your protocol. I still take your happy stack on and off every once in a while.

Is there any concern about liver damage with this protocol? The doses across the board seem to be rather high(usually 2-3x normal/recommended) for most of the supplements.

Is the full list of supplements imperative or is some of it recommended?

Are you planning on sliding the dosing back after achieving remission?

Is the keto light diet necessary or just recommended?

I'm somewhat interested in trying it, especially after having a good response from my covid vaccine both times which leads me to believe that kicking my immune response into over gear would yield positive results again.

Interesting question about the liver damage - interestingly enough, the protocol is killing and replacing cells, however none of the usual LFT markers have been showing as elevated / out of range.

At this stage, the list of supplements are quite rigid (known good) and we’re having to be really careful with brand / product selection due to labelling issues.

It’s not yet known exactly how long someone will need to continue dosing the complete protocol once all signs of immune response have abated. We’ll be looking into this soon.

The “almost keto” diet is required for the ROS reset period (usually 3-4 days) and then something closer to 1:1:1 macros spilt has been working well, with some flexibility based on glycogen usage.

Glad you enjoyed the uridine stack, also.

 

[BrightCandle]

After feeling quite ME I upped the ECGC dose from 25g to 50g and 75g and have settled at 100g which seems to give me the same effect as the 200g not split capsules from before. I strongly suspect that my supplement is mislabelled in how much it actually contains within a single capsule. I am taking nothing that ought to impact on this but I get a clear and massive reduction of headaches at 100g verses 25g but I don't think there is much more to gain beyond this dose. After 7 years and literally no one being able to help my headaches much at all to get days without them for the first time in a very long time is a wonder drug, thank you for that. If it doesn't ultimately cure me I have had some of the most productive days over the past weeks I have had in years already and if that continues my life has improved dramatically.

I have at this point gone from Moderate/Severe to Mild/Moderate, at least a 0.5 jump and as I test the limits maybe 1 point jump. The effect was pretty rapid, I am now 17 days in. Things aren't perfect I oscillate and get headaches on mental exertions still but my best and worst are quite substantially improved. Some part of this protocol does good work for me.

 

[joshua.leisk]

After feeling quite ME I upped the ECGC dose from 25g to 50g and 75g and have settled at 100g which seems to give me the same effect as the 200g not split capsules from before. I strongly suspect that my supplement is mislabelled in how much it actually contains within a single capsule. I am taking nothing that ought to impact on this but I get a clear and massive reduction of headaches at 100g verses 25g but I don't think there is much more to gain beyond this dose. After 7 years and literally no one being able to help my headaches much at all to get days without them for the first time in a very long time is a wonder drug, thank you for that. If it doesn't ultimately cure me I have had some of the most productive days over the past weeks I have had in years already and if that continues my life has improved dramatically.

I have at this point gone from Moderate/Severe to Mild/Moderate, at least a 0.5 jump and as I test the limits maybe 1 point jump. The effect was pretty rapid, I am now 17 days in. Things aren't perfect I oscillate and get headaches on mental exertions still but my best and worst are quite substantially improved. Some part of this protocol does good work for me.

Glad you’re enjoying the experience.

Don’t forget - you can also take a break from “doing the work” and have some more stable / enjoyable series of days by suspending the beta-glucans. The ongoing immune response influences the ROS, etc. However, this stalls the progress towards long-term goals.

On the assumption that your ROS scavenging is otherwise perfect, it may be worth increasing the reishi dose (the product variability could be here, as much as the EGCG) - it has an additional indirect influence (2 layers back) which reduces GDH.

The combined effect of EGCG and reishi on GDH is used to achieve a “normal range” GDH.

The reishi dose is important, as it also helps control another “backup” pathway / feedback loop for viral GDH elevation, which is altered by another enzymatic impairment.. which I’ll be discussing soon. (The level of redundancy seen in biology, including viruses, is something we should use as a model for engineering specifications.. truly amazing!)

I’ve been exploring some ideas to alter that pathway / impairment directly. There are some food items in the example diet above which also aim to help this. I’ll share a lot more about this soon, along with a growing list of GDH influences.

 

[godlovesatrier]

That's great news @BrightCandle . Really pleased you've had a big jump.

I've got a covid jab on the 3rd so I've got to come off anything immune exhaustive/aggregating and based on Cort Johnson's article MDs who were ME specialists recommended various things before the jab including vitamin c and glycine/nac but not limited to them. So this should allow me to test the no immune response theory.

I went out last night which I haven't done in probably 3 years and didn't experience any physical pain but the muscles in my legs did seize up while I was out. Although it was quite a contrast to what I was once able to do.

I did crash thismorning with muscle fatigue, what feels like brain inflamation and a ebv like swelling of the gland in my throat. I also seem to have a lot of mucus thismorning.

So I'll see what the protocol is like without any immune herbs.

 

[joshua.leisk]

That's great news @BrightCandle . Really pleased you've had a big jump.

I've got a covid jab on the 3rd so I've got to come off anything immune exhaustive/aggregating and based on Cort Johnson's article MDs who were ME specialists recommended various things before the jab including vitamin c and glycine/nac but not limited to them. So this should allow me to test the no immune response theory.

I went out last night which I haven't done in probably 3 years and didn't experience any physical pain but the muscles in my legs did seize up while I was out. Although it was quite a contrast to what I was once able to do.

I did crash thismorning with muscle fatigue, what feels like brain inflamation and a ebv like swelling of the gland in my throat. I also seem to have a lot of mucus thismorning.

So I'll see what the protocol is like without any immune herbs.

Without the beta-glucans, people report a pretty enjoyable experience. The reishi needs to be maintained, of course.

 

[godlovesatrier]

Good to know thanks.

It feels like ginseng currently without the beta glucans and the much higher egcg dose of 325mg (today). The difference being ginseng has an exponential buildup in the system so that each day you get x times more effect than the previous day. Which is rather useful for ME. Turns out that brings about its own issues. As it seems to imbalance the immune response. Both times I got bacterial throat infections I was on ginseng.

Also the side effects from bcaas and ginseng are quite similar now. I get angry and physical on both. Not a pleasant experience.

Anyway egcg today has left me feeling more like the ginseng early days where it made life much easier and many of my symptoms melted away. But my maximum exertional tolerance was still lower than pre ME.

I've done a lot today though and I think that's likely due to the egcg. Moreso as I woke up feeling a bit crashy. But seemingly recovered very quickly. I noticed standing up for long periods stil extremely difficult as it has been from day one. Just dizzy after awhile and feeling unwell/energy drained.

 

[terry_anova]

I dosed on the BCAAs, and LOLA and EGCG, energy is coming back slowly. Will just take it easy. Switched Reishi Brands now, using https://www.mycomedica.eu/eshop-reishi-triterpen.html - Nothing new or impressive to report, just a general sense of fatigue, slow thinking and slight pain behind the eyes.
.
Also no new colitis or inflammation on the spine.

 

[Reading_Steiner]

That's great news @BrightCandle . Really pleased you've had a big jump.

I've got a covid jab on the 3rd so I've got to come off anything immune exhaustive/aggregating and based on Cort Johnson's article MDs who were ME specialists recommended various things before the jab including vitamin c and glycine/nac but not limited to them. So this should allow me to test the no immune response theory.

I went out last night which I haven't done in probably 3 years and didn't experience any physical pain but the muscles in my legs did seize up while I was out. Although it was quite a contrast to what I was once able to do.

I did crash thismorning with muscle fatigue, what feels like brain inflamation and a ebv like swelling of the gland in my throat. I also seem to have a lot of mucus thismorning.

So I'll see what the protocol is like without any immune herbs.

Drinking alcohol ? if joshua is right then I imagine at sufficient level the EGCG would function similar to the succinate which as I described it does a similar thing, don't even feel like getting up and then super stimulated,
haven't experienced that yet with egcg but i'm below 50mg still ( recommended was 25 remember ? ). Again today it was past midday and everytime I felt like I was waking up I felt like I didnt have enough energy so just turned over and went back to sleep again, finally I did get up because a tiny bird climbed through my window and was chirping loudly so I had to get up and wave it away.

 

[godlovesatrier]

Hi @Reading_Steiner

I don't drink anymore. I stopped drinking in 2018 when I realised how much sicker it made me. Which it always did. Made my dizziness much worse. And I don't really have any intention of drinking again. I'm also very dairy intolerant. Going to the loo 5 times a day isn't worthit so I steer clear of that for the same reason

Yeah that's right it has a vaguely stimulating effect. I. Say vaguely because it's not super strong like ginseng but it's still there.

Josh has indicated to me privately and on this thread that it seems egcg and gdh inhibition is assisted by higher doses. Which is why I'm experimenting with high doses because the low doses seemed to give me some results. Albeit in a slightly volatile way so more makes sense. But yes 25mg egcg was the starting suggested dose. I believe Josh is working on another paper to explain his gdh and egcg theories in more detail soon.

It's been very up and down for me. Today was a really good day. Lots of energy I haven't crashed (yet) and not much fatigue on exertion but of course fatigue on exertion did kick in just a hell of a lot later than it usually does. Basically the length of time it takes my muscles to tire at these higher doses seems much longer. Hence it feels like taking ginseng. Which does the same thing. For me anyway.

Like @BrightCandle my takeaway so far is that I've gone up a level in terms of functioning. Not almost housebound like I was before. Able to go out seemingly almost every day. But the highs do seem to be higher and the lows lower. I'll see how the next 2 weeks go. I'm expecting the 2nd covid jab to knock me out.

But today's 325mg egcg experiment was interesting. That's the first dose for me that seemed to block higher levels of exertion throughout the whole day. But still need more time to correlate trends.

 

[The Bard]

@joshua.leisk

I'm endeavoring to deftly thread the eye of the needle, but prior to embarking on the fasting pilgrimage, I was hoping to speak to Joshua, or anyone for that matter, to ensure that I procure the correct supplements. I would hate to endure additional suffering just to be undone by a faulty reishi purchase. Is there by chance a master list delineating the most efficacious offerings for this treatment protocol? If not, would someone be willing to connect to share their insights and assist a fellow traveler on this unenviable inferno we've been forced to traverse? Also, I would have sent this communique via the private message function, but as a novice member, that feature is not yet available to me.

Quite candidly, the situation on the homefront is becoming rather dire and the hour is drawing late. If I'm unable to experience some sort of renaissance over the next several months, my family and I could be facing utter financial ruination. Not wanting to burden loved ones with my continued collapse, it would feel prudent to remove myself from the narrative, thus freeing them from indignity, poverty, etc.

 

[terry_anova]

Day 25 of EBV lytic suppression (Spironolactone), Day 13 of EBV latent attack (Reishi Triterpenoids, BetaGlucans)
.
The Premium extract seems to be stronger. https://www.mycomedica.eu/eshop-reishi-triterpen.html - It feels deeper reaching: a nice 'proper' headache, poor sleep, sinus congestion, general fatigue and slight spine flareup.
.
On a plus side seems like my throat irritation is now much less than it was initially.
.
I think this should be the worst, I'll be getting now.
.
Seems like I'll be sticking to Reishi for Life or at least infrequently.

 

[splusholia]

After feeling quite ME I upped the ECGC dose from 25g to 50g and 75g and have settled at 100g which seems to give me the same effect as the 200g not split capsules from before. I strongly suspect that my supplement is mislabelled in how much it actually contains within a single capsule. I am taking nothing that ought to impact on this but I get a clear and massive reduction of headaches at 100g verses 25g but I don't think there is much more to gain beyond this dose. After 7 years and literally no one being able to help my headaches much at all to get days without them for the first time in a very long time is a wonder drug, thank you for that. If it doesn't ultimately cure me I have had some of the most productive days over the past weeks I have had in years already and if that continues my life has improved dramatically.

I have at this point gone from Moderate/Severe to Mild/Moderate, at least a 0.5 jump and as I test the limits maybe 1 point jump. The effect was pretty rapid, I am now 17 days in. Things aren't perfect I oscillate and get headaches on mental exertions still but my best and worst are quite substantially improved. Some part of this protocol does good work for me.

Do you mean grams or milligrams?

 

[godlovesatrier]

Well thismorning I woke up without any physical fatigue and no brain fog or anything. But my muscles were very tired although no so tired that it would cause them to fatigue, hence I am saying there tired here and not fatigued. Quite a contrast to the last 5 years. My body did start to crash last night so I took 250mg R-ALA and that stopped the crash rather remarkably. This was part of my evening dose so I also took 5g glycine and 4g magnesium ascorbate.

Yesterday I took 325mg egcg, then another 325mg at lunch and then 125mg egcg at 5pm with no evening dose. Replacing the evening dose with r-ala might be quite advantageous in my case. To not have any muscle fatigue is really quite amazing. I have my jab on Thursday so all bets are off for me until a week or two's time.

 

[BrightCandle]

Do you mean grams or milligrams?

Sorry milligrams. My supplement is capsules contain 800mg of material claiming 200mg EGCG. I am now halving them instead of 8ths, so around 400mg total material and 100mg of EGCG (claimed).

 

[Reading_Steiner]

For the naysayers and doubters, I was able to make my fever come back ( after 2 weeks of no fever ), by following the new scientific insights that Joshua was able to divine since creating the 3.2 treatment plan.
Hopefully this time it really is the end of this stupid disease. 【東方ボーカルENG SUBS】THE END【A-ONE】
Thanks everyone.