Purported cure for Latent Virus sustained ME/CFS by Joshua Leisk and Aline Nocon

YippeeKi YOW !!

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Second star to the right ...
Bear in mind that other countries will still be selling NAC, so you’ll be able to order it from eg. iHerb, Amazon EU, AU, etc.
I hope you're right, but when they pulled L-Tryptophan (some bogus story about a batch of contaminated supps from Asia), you couldnt buy it from foreign sources if it wasnt approved for use in the US.

The tentacles are long, grasping, strangling, and relentless ....
 

Reading_Steiner

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I got a generic pain in the right side of my body not long ( 1 hour ? ) after switching to the new type of green tea ( cut down from around 800mg to <100 mg ), feeled a bit like a stitch but I can't be sure, it could be muscular. They were prodding me a lot this morning for the ultrasound but that was 6 hours ago. very odd. Remembering back to Joshuas paper I ate a chocolate mouse and it seems to reduce the pain to tolerable levels.
 

joshua.leisk

Joshua Leisk (Researcher)
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I got a generic pain in the right side of my body not long ( 1 hour ? ) after switching to the new type of green tea ( cut down from around 800mg to <100 mg ), feeled a bit like a stitch but I can't be sure, it could be muscular. They were prodding me a lot this morning for the ultrasound but that was 6 hours ago. very odd. Remembering back to Joshuas paper I ate a chocolate mouse and it seems to reduce the pain to tolerable levels.
If it feels like a stitch, we’d normally see that as either liver pressure / immune response or if it followed activity, issues with beta-oxidation that in our model would normally indicate low Acetyl-CoA and suggest increasing NAC and EGCG dosing.
 

Reading_Steiner

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Its strange, just switching green tea shouldn't cause that, unless the amount in my old one was so low ( say 5mg ) that changing up to above 30 mg would cause an intense immune reaction specifically there ? it was more like a mild stabbing pain rather than the fevered ache I experienced days ago. I will see if its still there in the morning, switch back to my old green tea for now etc and see if it makes a difference. The only other thing I can think of is some sort of allergy to an ingredient in the new one ?
 

joshua.leisk

Joshua Leisk (Researcher)
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Its strange, just switching green tea shouldn't cause that, unless the amount in my old one was so low ( say 5mg ) that changing up to above 30 mg would cause an intense immune reaction specifically there ? it was more like a mild stabbing pain rather than the fevered ache I experienced days ago. I will see if its still there in the morning, switch back to my old green tea for now etc and see if it makes a difference. The only other thing I can think of is some sort of allergy to an ingredient in the new one ?
It sounds a lot like the expected liver pressure.. maybe check just below your sternum, also?

Interestingly enough, for reasons as yet unclear, the GDH being too high appears to impair the immune response. I’ve seen a couple of people increase EGCG and suddenly reach the “hit by a truck” phase.

I have some ideas about this, but I’m still exploring them. ☺️
 

Reading_Steiner

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Still got the unexplained pricking pains with total absence of fever, on the right hand side just above the belly button, and also depression now. Bit worried about liver damage from the mushroom or something like that. Its strange how it came on suddenly after going for an ultrasound and also taking a different green tea which was a bit stronger but not crazy high. Don't know if its safe to continue doing the experiment at this point.
 

joshua.leisk

Joshua Leisk (Researcher)
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Still got the unexplained pricking pains with total absence of fever, on the right hand side just above the belly button, and also depression now. Bit worried about liver damage from the mushroom or something like that. Its strange how it came on suddenly after going for an ultrasound and also taking a different green tea which was a bit stronger but not crazy high. Don't know if its safe to continue doing the experiment at this point.
I’ll be making a new post soon. I’ve had another big “aha” in the last few days - EGCG has a function which triggers additional immune response, alongside reishi (and others). The dose is quite important, as a bell curve applies.

Fever - this isn’t reported as always present. Often, it’ll come and go. Some people only have a few days of it, but have eg. 2 weeks of dizziness and fatigue.

One person recently had an ultrasound done for their liver and a MRI of their brain, following a month of mushrooms, etc.

Everything looked very good.

Brain was described as “beautiful” and the liver showed signs of what appeared to be the expected ongoing immune activity - despite the pressure having come and gone. They’ve also reported having the best day in many months.

The immune response is going to target any infected tissues. The fun part is there seemingly isn’t any logical pattern as to which tissues are targeted first. :)
 

godlovesatrier

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Hello,

Bit of a summary:

I was on the full protocol until last week.

I had been having various side effects for a long time and I couldn't figure them out but I was doing all sorts of experiments to get to the bottom of it. Side effects:

1. Declining sex drive which went to zero
2. Feeling hyper slightly wired but tired
3. Heavily disrupted sleep for months which never calmed down
4. Depression which gradually got worse and worse
5. Very tired eyes, very tired in the evenings. Not a symptom of ME as far as I'm concerned. Fatigue and exhaustion yes but tiredness like this...no
6. Increased brain fog

So some good news. Most of my symptoms which disappeared are still gone:
1. Virals symptoms, sore throat, lymph nodes swollen, getting a cold all the time and feeling sick all the time.
2. Cranial cervical spinal and muscular issues. Spinal issues are still gone proper methylation appears to have been the answer, haven't had any inflamation below my skull or in the occipital area for months. As for the muscle issues if I stop b12 they come back.
3. Fatigue: eventually it stopped and I haven't had it that bad for at least a month or two.
4. PEM is not blocked but substantially reduced 80%
5. I can go out 3 times a week now.
6. Until last week I was doing 40 minute walks 2 or 3 times a week. But then I had a sudden bout of gastrointestinal distress and now I am much weaker. No idea why. Suspect change in probiotic experiments ongoing.

So explanation on side effects:

1. 5-ar inhibitors: my prolactin came back very high, which means dopamine is low usually. My sex drive was zero, I was very depressed, I had no motivation to do anything. 2 weeks ago I removed lion's mane and this seemed to fix the problem. I'm fine now really sex drive normal, depression gone.
2. Wired but hyper: egcg was the culprit. This stuff is honestly brilliant but man it's hard to tolerate long term. It has so many awesome properties. It even helps my neck stiffness remain at bay. But it's another 5-ar inhibitor and it makes me feel off anyway.
3. Sleep: primarily b vitamin driven. Experiments ongoing but much better since I started removing and compounding my own b vitamin's.
4. Tiredness: the first few months of taking Thorne b complex my sleep was crap but my energy levels gradually improved. Then about a month ago when I had to start coming off it due to terrible sleep problems I noticed that my voice which had been rough and super croaky and my eyes which had become extremely tired disappeared. Both symptoms just vanished. For some reason b12 does this to me. Not got a clue why. It's nothing to do with potassium or too little folate. Experiments ongoing. Next to try bioavailable cofactors from b12oils.com.
5. Much worse brain fog: the b vitamin's give me brain fog simple as that. However on Friday last week before my gastro intestinal meltdown I got 5 hours of totally free brain fog from some b12 I took. The next day I took b12 and went to sleep for 4 hours. But I was sick by then so that night have been immune activation. Today is Monday I took b12 and didn't get much of a boost. Experiments ongoing: my bottle is a year old and running out fresh oil on the way!

Also I feel like I have symptoms of a bacterial issue all the time now. Like I can't concentrate easily I feel foggy drained or have little motivation. I want to buy anti biotics because I had an infection in my throat and I'm convinced it never cleared. I was feeling amazing until I got my second jab and subsequent throat infection. Felt like shit ever since. So another possibly experiment is a week of anti biotics. But I need to find the right one. Doxycycline possibly.

Basically my body works much better. Assume th1 potentiation and anti viral action. But my brain does not. Assume th2 suppression causing bacteria to proliferate more easily.

Re th2 experiments ongoing: try 150 billion cfu probiotic with over 30 strains and see if these symptoms improve. Solar ray 24 strain did wonders for me before I started the protocol.

Hope that helps.
 

godlovesatrier

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One last thing, at the start of august my neutrophil count was very low 1.6 and so were my WBC's. I reduced my oat bran intake by 2 3rds and as you can see removed quite a few other things. My prolactin was also very high.

I got re-tested on Friday and just got the results. Neutrophils are still very low, prolactin is still high. I haven't got the exact results, but this does not bode very well because my WBC's were fine before I started this protocol and I am not aware that my prolactin had any issues either. Which does make me wonder if it's somehow doing more harm than good.

I take now

  1. Reishi
  2. NAC
  3. Glycine
  4. Panthenic Acid
  5. B12
  6. B1
  7. B2
  8. B6
  9. Folate
  10. Vitamin d 8000 Iu per day
  11. 650mg magnesium 3 separate kinds
  12. mag ascorbate 3x a day
  13. r-ala 3x a day

So I was hoping my blood test results would have improved, if not my hypothesis about a bacterial infection would potentially appear correct because the neutrophils are chronically low and have been for nearly 2 months. So I am slightly worried now! and maybe I am a cautionary tale who knows.

With this news and the tiredness induced by the b vitamins, it might be time to remove them completely next and see if that improves my blood test results. It's that or come off everything apart from the oat bran and the reishi.
 

YippeeKi YOW !!

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Second star to the right ...
I had been having various side effects for a long time and I couldn't figure them out but I was doing all sorts of experiments to get to the bottom of it.
So some good news. Most of my symptoms which disappeared are still gone:
What a stunningly thorough, smart, incredibly good post, Trier ..... you've so totally lived up to your name, and your results, while not perfect, are impressive and engender hope, something we all need here !!!!


I've dipped in and out of your blog, but found it too challenging on my bad days, so was very glad to get the Cliff Notes.

Thank you, again, so much for posting this, and thank you @sb4 for the inquiry that led to their appearance here :thumbsup::thumbsup: :hug:!!!

Onward and Upward :rocket::rocket::rocket: !!!
 

godlovesatrier

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Thank you. I really don't think I could have kept up with all this if my mental and physical energy had not got so much better.

But these blood test results are very worrying, prolactin should not be very high, neutrophils before my 2nd covid jab were the healthiest they had been in years. But now they are almost at a critical point (in terms of neutropenia). So my next experiment will consist of totally removing the b vitamins (as they make me feel tired and tiredness usually means th2 suppression in my experience) - to see if they improve...I really hope they do I'd rather not dump the whole protocol :((((

Thanks all,
 

godlovesatrier

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Hi @Learner1

Yes that's my only other possible theory. My HTMA shows elevated levels for all of these, compared to my HTMA from 2018. But to my knowledge this could indicate that R-ALA is pulling minerals out into the hair/urine, whilst also dumping heavy metals at the same time.

At any rate I'll have to make more drastic actions now to get things under control. Can't totally rule out the covid jab, but my money is more on the throat infection I had causing me more long term problems. However every single immune cell went low. Also another trend I noticed my iron ferritin and the other iron blood test marker - well they've all fallen since I was on the protocol. So again that makes me think the ALA is slowly stripping my body of these minerals. I've taken the ALA out today.

As for the minerals I spoke to Greg at B12 oils and he said the same thing. Iodine, selenium and molydenum, in their respective bioavailable constituents not just the ordinary ones.
 

godlovesatrier

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Forgot to say. I've probably been taking potassium for over a week. 400mg then 1g then 1.5g a day in split doses. Didn't seem to do a lot to be honest. But one less thing to worry about.

Greg also said my b12 and folate being very high on serum tests indicates paradoxical b2 defiency due to lack of mineral co factors. As I'm getting plenty of b2. I guess taking b2 and b12 could have further depleted co minerals. With urine and hair binding from ala. So possibly not a very good recipe at all.

At any rate removed the ala for the time being. Will get some mineral co factors.
 

Learner1

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Greg says the same thing to everybody, no matter what they tell him.

However, ensuring you have the proper cofactors in place to support detoxification is critical.

The role of ALA is to pull toxins out of the mitochondria where they have been sequestered. This brings them into the bloodstream where you need the phase 1 and phase 2 detox processes and all their nutrients to be able to metabolize them and then send them to phase 3 for elimination. Not taking ALA will keep the toxins happily sequestered in your mitochondria until you get your detox processes working properly, but you will need it to get rid of the toxic stuff.
 

godlovesatrier

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Well I'll see how I get on. To be honest at this point I'm not sure what is causing the wbc drop.

If the htma is accurate then I've got plenty of each co factor present.

Good point about ALA. But doesn't clear up whether it pulls minerals as well hence lowering the bodies stores. And why iron is dropping too.

I'll probably try his co factors tho. Should have nothing to loose by taking those 3. I hope!
 

JES

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I react negatively to all B vitamins in a rather similar way as you. At first they rev up my system, which means I cannot sleep and later comes the brain fog and depression. I also got the tired eyes when watching any screen for a longer period of time, but it was actually the eyes being dry that caused my symptoms.

Folate and B12 were probably the worst, B1 and B2 a little more tolerable. I tested almost exactly middle of range for B1 and B2 whole blood years ago and somewhat high B12 and folate, so in my case it has probably nothing to do with deficiency or out of balance B vitamins.

The only B vitamin that doesn't do this for me is B3 (niacin), which actually does the complete opposite. It might have something to do with the fact that at least the niacinamide form acts on GABA receptors or it might be the undermethylation vs overmethylation with other B vitamins, who knows. Anyway, maybe B3 could help to reduce side effects from other B vitamins, that's something I haven't tested.
 

godlovesatrier

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Hi @JES

Yes same here with b3, it gives me brilliant sleep. I am sure @Mary said she used to use b3 for the same reason.

Problem was my depression seemed to get worse when I took b3, I've yet to retry it, although to be honest now I've removed all the b vitamins my sleep will be fine. I plan to put the b1 and b6 back in, as I was taking that before I started the protocol without issue.

But yes b3 is an interesting one, meant to knock out methyl groups as you say.