ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[godlovesatrier]

Good advice. Consider it added to 3.3.
I'm also hoping to have a larger list of GDH altering compounds soon. @mariovitali's very helpful software has already churned out some interesting early data and this will get better with some additional training.

No problem. I'm really interested in the GDH altering compounds, what would GDH alteration look like on an OAT test? Altered alpha keto glutarate? Can't wait to see the compounds.

 

[godlovesatrier]

@joshua.leisk is your protocol per day now then? As opposed to 3x? For maintenance I mean?

Hopefully some of us will be able to get there.

 

[Reading_Steiner]

38 degree C fever Lint. Have not measured that high before or since. I don't react as strongly to the antiviral treatment as others unfortunately, but I respond really well to succinic acid / ACV, only took that twice though.
We get the feeling this treatment will take months to see a major improvement rather than days or weeks.

 

[godlovesatrier]

Most anti viral protocols do take months it seems before you see an uptake. Although of beta glucans are as powerful as equilibrant and valtrex/valcyte combos, that's quite a statement which definitely needs baring out with pathology and trials.

But if that were true, it would be interesting to know how the mode of action is as potent and why - scientifically speaking.

 

[Reading_Steiner]

I'm very conscious at the moment that modern technology was a mistake but imagine if we had some sort of sensor that could detect levels of things thought to be relevant in real time, like the things related to the cell respiration cycle, or immune system vs virus, that would be so useful for our experiments here.

 

[godlovesatrier]

That will definitely be the case one day. But medicine seems to be super slow. We're in the technological revolution but definitely not the medical revolution. that's yet to come.

But I agree. In the future I'm convinced that's exactly what people will be able to do.

 

[godlovesatrier]

So just doing some quick reading does adenosyl and methyl b12 convert to succinyl-CoA which converts to succinate (temporarily making someone with ME feel better?) but also ramping up ROS in the process? If I read your page 15 post right:

Prefacing everything I mention below as "specifically, in our disease model", "this is not medical advice", "YMMV", etc -

"For a moment, hypothetically forget everything you know about the immune response, or that we've heard the words 'triterpenes' or 'reishi'."
(I think I gave @Hoosierfans a mild heart-attack earlier, as I ineloquently gave her a preview of this post content and my casual phrasing may have given her the impression I was abandoning my research. lol.. Not a chance!)

Lets carefully look at the disease model again and at the ROOT CAUSE of the cascade.

Per paper 3: All non-autoimmunity issues (AKA lytic phase) are created by the ratio of activity between GDH and a-KGDH.

The carbohydrate intake profile therefore becomes a sensitive lever (or driving force) for creating ongoing or additional ROS and PEM, primarily because the concomitant hyper-secretion of insulin (caused by high GDH) is forcing energy into the mitochondrial reactions (think about kids getting "high" on sugar).
1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3178282/
2) https://diabetes.diabetesjournals.org/content/51/3/712
3) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136010/

Simultaneously, due to high GDH:
If the mitochondria have been getting force-fed mostly from "anaplerosis" via

a. glutaminolysis (->),
b. glutamate->a-KG (with high NAD+),
or
c. (once ROS becomes so high that the mitochondria "fragments", being very low / depleted a-KGDH), transamination at akg->glutamate + aspartate->oxaloacetate
d. excess urea->fumarate
e. excess B12+P5P->succinate (human intervention)

then there is already "sufficient" (or excess, rather) energy inside the mitochondrial reactions.

My body seems to need tiny amounts of b12 - I can only assume my body is very good at turning b12 into succinate acid and when I have loads of that I end up with insomnia and headache/over stimulation?

 

[godlovesatrier]

Just violently threw up thismorning 2 hours after my first dose. Making me reconsider the r-ala that's for sure. Can't really think what else would do that to my stomach.

I'll try another dose after lunch but without the r-ala.

 

[jump44]

Just violently threw up thismorning 2 hours after my first dose. Making me reconsider the r-ala that's for sure. Can't really think what else would do that to my stomach.

I'll try another dose after lunch but without the r-ala.

Sorry to hear. Can I ask why you think it’s definitely the ala? You’re taking dozens of things so just wondering.

 

[godlovesatrier]

Well this will be tmi so don't say I didn't warn you! Those who don't want to know best not read on:


When I threw up the only thing that came up was a white sludgy substance. The only thing that's thick white powder is the r-ala.

However I did a little experiment today and I seemed to be fine with 4g glycine + the nac. But when I took the choline and egcg the nausea came on. This was with the r-ala removed.

If I drink green tea it makes me feel awful. Like very sick and nauseaus and just unwell. So your right I may have been wrong but it was 4am when I thought it might be r-ala! I'll take out the egcg for my evening dose and see how I get on! Process of elimination is all I've got to go on really...

 

[jump44]

Green tea give me nausea as well but only on an empty stomach, did you take on empty stomach?It’s possible that it was that or the powder went down the wrong airways haha. Anyways hope you feel better!

 

[godlovesatrier]

Hehe. That would do it

Yeah the first two doses are thirty minutes after food. So that should be fine really. However the evening dose is pre food. But I was fine for days. I do wonder if the new life extension green tea I started is much stronger and therefore the side effects are much worse. I'm still at the lowest dose tho.

Thank you. It's been a horrible day. But I'm determined not to loose the benefit of these beta glucans and triterpenes.

Evening dose (3rd dose) will consist of (for those would like to know):

4g glycine
600mg nac
Normally panthothenic acid but I will remove this.
980mg lion's mane
980mg reishi
200mg choline

Removed oat bran and r-ala.

 

[BrightCandle]

Day 8 or 9.

Bloated GI distress, liver pain and very tired, slept in the middle of the day and plenty of fatigue. Headaches remain mostly gone I took some SB yesterday afternoon I hope to get through today without any more but we shall see. Super hungry today, body is energy starved craving loads of energy dense foods. I don't feel great at the moment but it feels like ME rather than anything else to me so far.

A few days ago I received 50x 50ml sealable pots, saves so much time. I prepared a few days of powder and pills and tomorrow I plan to do a week of powders, pills and tablespoons of food stuffs so hopefully 4x a day I remove 3 pots, one goes in the microwave, one goes in some water and the other gets swallowed with the water. Should make life a bit easier! Not feeling up to that exertion today.

 

[HealthnHappiness]

Hey everyone - great to finally be participating in the discussion here (before this was just reading).

Anyone have a good source/product for Sodium Benzoate for USA?

 

[joshua.leisk]

Hehe. That would do it

Yeah the first two doses are thirty minutes after food. So that should be fine really. However the evening dose is pre food. But I was fine for days. I do wonder if the new life extension green tea I started is much stronger and therefore the side effects are much worse. I'm still at the lowest dose tho.

Thank you. It's been a horrible day. But I'm determined not to loose the benefit of these beta glucans and triterpenes.

Evening dose (3rd dose) will consist of (for those would like to know):

4g glycine
600mg nac
Normally panthothenic acid but I will remove this.
980mg lion's mane
980mg reishi
200mg choline

Removed oat bran and r-ala.

Nausea has been reported as common during the liver focused period.

My research this week suggests strongly that the EGCG adds to the immune response generated by reishi. There’s more involved and I’ll be sharing a lot of detail about this shortly. The dose is important, as a bell curve applies, however I wouldn’t consume it on an empty stomach.

 

[joshua.leisk]

Day 8 or 9.

Bloated GI distress, liver pain and very tired, slept in the middle of the day and plenty of fatigue. Headaches remain mostly gone I took some SB yesterday afternoon I hope to get through today without any more but we shall see. Super hungry today, body is energy starved craving loads of energy dense foods. I don't feel great at the moment but it feels like ME rather than anything else to me so far.

A few days ago I received 50x 50ml sealable pots, saves so much time. I prepared a few days of powder and pills and tomorrow I plan to do a week of powders, pills and tablespoons of food stuffs so hopefully 4x a day I remove 3 pots, one goes in the microwave, one goes in some water and the other gets swallowed with the water. Should make life a bit easier! Not feeling up to that exertion today.

Well done.

Someone mentioned they made up multiole “potion bottles” of the SB and a row of pill pots, along with phone alarms, in case they were too out of it to remember their dosing. Sounded quite convenient.

 

[joshua.leisk]

So just doing some quick reading does adenosyl and methyl b12 convert to succinyl-CoA which converts to succinate (temporarily making someone with ME feel better?) but also ramping up ROS in the process? If I read your page 15 post right:



My body seems to need tiny amounts of b12 - I can only assume my body is very good at turning b12 into succinate acid and when I have loads of that I end up with insomnia and headache/over stimulation?

That’s part of the model, yes.

I’ve suggested to some people that 3-4g of taurine before bed may be very useful for giving quality sleep.

https://pubmed.ncbi.nlm.nih.gov/18605241/

https://pubmed.ncbi.nlm.nih.gov/20493155/

https://pubmed.ncbi.nlm.nih.gov/18171928/

 

[godlovesatrier]

Cool look forward to your egcg update! Sounded interesting.

I've gone back to the old brand of EGCG for the time being, simply so I can keep on the protocol properly and that seems to be fine (so far), the benefits might not be very good but at least I am not throwing up! Definitely had a temperature most of today, but that's gone down now I've taken the reishi and lions mane. I managed to get whey protein isolate down too so that should add another 75g+ of protein a day. EBV doesn't seem to like high protein diets I've noticed.

Might give the Taurine a go, I just feel like I am fighting an infection all the time. Feel cold, weak, nausea, no vomiting today so far. But just wish I was really tired so I could just lie in bed or sleep, as it is my bodies very stimulated so it's hard to keep my brain quiet.

Glad I read the b12 part properly!

Thanks for the Taurine links.

 

[Hoosierfans]

So here’s my report after a week of being on higher dose of EGCG (along w a couple other things we switched).

Short answer: feeling way more fatigued, way more dizzy / drunk dizzy / no energy to go do anything, much more brain fog and memory problems. Good things: skin burning is down

Changes: upsized EGCG to 60 mg. Moved to low carb diet on Monday; added 250 mg sodium benzoate ans 250 mg glycine every 30 minutes starting Tuesday, along with upping NAC to 1000 mg 3 x day, ALA to 500 mg 3 x day, Vitamin C 250 2 x. Staying around 60-90 carbs / day. I’ve added charcoal out of concern that with all the NAC and ALA, I may be pulling some serious metals.

Also added taurine a couple of days ago, which seems to have zonked me out all night so I’m sleeping through the night. I took 3 mg. I’ve tried it during the day, 2 mg am and 2 mg afternoon.

I am starting to suspect that all the things supporting my Gaba system may be pushing it too far — ie I have a ton of glycine and a ton of taurine on board, in addition to the gabapentin I am already taking. And, the diet could be making me super tired and dizzy. @josh ans I will re regrouping to see how we proceed

 

[HealthnHappiness]

@Hoosierfans are you taking the b complex as well?