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ME/CFS Research: Herpes Autoimmune Spectrum Disorder

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pamojja

Senior Member
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2,398
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Austria

Always read the ingredient label of any supplement you take very carefully, as in the picture above.

This one isn't standardized at all! Standardization is more expensive, and would be proudly announced in the supplement facts to increase its perceived value. Instead of standardization of the extract itself, all they did was testing different patches (most likely from China, otherwise indicated too) for their minimum Catechin and Caffeine content. It's EGCG content is unknown, or if they also tested, simply too insignificant to be mentioned.

I can vouch for the LEF decafinated Mega Green Tea extract I took already for many years (though as whole capsule in the morning on empty stomach), which is high quality and actually low cost. Since on this prodocol 1 capsule has to be divided into 12 parts, I would use a clean surface, like a small tablet, Make an equally formed heap of one capsule's contents, divide in 3 equally sized heaps, and devide those 2 further times to receive 12 equally sized parts. 1 to be taken for each dose. Taste wont be very pleasant. One could also fill each dose in a empty capsule and take it that way.

No opened green-tea capsule's powder would loose significantly its EGCG content in only a few days. In Ayurveda they assume a herb-powder is usually most potent the first half year. Protected in capsules ~2 years. And due to the compressed nature in pills (less oxidation) even much longer.
 
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pamojja

Senior Member
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2,398
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Austria
that matcha one I was looking at also has a cherry thing added which has high vitamin C which seems not good for this purpose.

Also the LEF Mix Capsules sugested by @joshua.leisk above contain almost 1g vitamin C in a daily dose, beside many fruit and also cherry extracts. So such seems not at all counterindicated. Lack of standarization for EGCG would be.

Joshua also above recommends a different NOW green tea extract actually standardized for EGCG: https://www.iherb.com/pr/Now-Foods-EGCg-Green-Tea-Extract-400-mg-180-Veg-Capsules/11598
 
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Reading_Steiner

Senior Member
Messages
245
Always read the ingredient label of any supplement you take very carefully, as in the picture above.

This one isn't standardized at all! Standardization is more expensive, and would be proudly announced in the supplement facts to increase its perceived value. Instead of standardization of the extract itself, all they did was testing different patches (most likely from China, otherwise indicated too) for their minimum Catechin and Caffeine content. It's EGCG content is unknown, or if they also tested, simply too insignificant to be mentioned.

I can vouch for the LEF decafinated Mega Green Tea extract I took already for many years (though as whole capsule in the morning on empty stomach), which is high quality and actually low cost. Since on this prodocol 1 capsule has to be divided into 12 parts, I would use a clean surface, like a small tablet, Make an equally formed heap of one capsule's contents, divide in 3 equally sized heaps, and devide those 2 further times to receive 12 equally sized parts. 1 to be taken for each dose. Taste wont be very pleasant. One could also fill each dose in a empty capsule and take it that way.

No opened green-tea capsule's powder would loose significantly its EGCG content in only a few days. In Ayurveda they assume a herb-powder is usually most potent the first half year. Protected in capsules ~2 years. And due to the compressed nature in pills (less oxidation) even much longer.
Empty capsule is an excellent idea, I will probably do that if I can, I was just looking at 10ml bottles or 5ml glass cosmetic / wax jars. I think problem is solved now.
 

godlovesatrier

Senior Member
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2,554
Location
United Kingdom
My last vit d test was 109nmol, the same year I got sick it was 95 nmol. Seems like it hovers around here.

Yes I'm tipping out and weighing 57mg of the green tea and popping that into a new capsule to take.

Overall the immune response is probably mild but lasts a few hours after dosing. My sore throat has gone again, which for me is great because I just hate the symptom! However I'm now battling a very dry mouth, I get this when my immune system is busy (when I get a cold). So I would say for me personally it's a good sign. But I'm not getting excited. Brain fog is a lot better and energy levels are much more stable I would say. PEM is very low, but haven't tested this to the limits yet.

Sleep is still not fantastic, slept very badly last night. My audio sensory over stimulation seems worse if anything at night, this has been my worst symptom with ME for sleep. I wake up to the smallest sound and it disappeared taking high dose thiamine, but now it's back. But it's very early days currently, I am not expecting to feel any dramatic results for another 9 days (this is due to having had fantastic results with other traditional medicine protocols in 2019 after 2 weeks).

However since I had EBV last year and was in and out of hospital I just cannot get rid of the inflammation in my brain and at the back of my head. Today I thought I felt briefly as if something was clearing from my outer head/brain, whilst this sounds odd I've experienced it before and see it as a major plus. But I would like to feel it again so I know it's not just my imagination.

Glad everyone else is seeing results, I'm not too worried that I haven't had a very strong immune response. I'm now taking 980mg resishi, 980mg lions mane and 2000mg oat bran 3x a day.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Also does anyone else's wee now stink of asparagus? :rofl:

Supposedly that's related to sulfur. Haven't been able to figure out all the complex metabolomics re Josh's paper, so if anyone has any ideas I'm all for it.
 

jump44

Senior Member
Messages
122
Ready to jump in and try this protocol.

Is there any substitute for R-ALA? I have tried it before, it gave me some pretty bad GI upset.

Is there a benefit to using oat bran and lions mane for beta glucans? why not use a beta glucan supplement by itself?

that sucks you don’t tolerate the R ala. I was skeptical that there would be any difference between this and the regular kind , (regular ala never did much of anything for me) however the R version is like a totally different thing for me, I notice a difference in energy/clarity within a half hour every time.
 

joshua.leisk

Joshua Leisk (Researcher)
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232
Location
Sydney, Australia
I’ve had some interesting results so far. Much clearer brain and some chronic pains in body have vanished. Have had on off headaches that just went away. I think I had some liver pressure yesterday but this is a symptom that’s come and gone on me for years so idk. Sleep has been way better.. however- I haven’t had the what seems to be full blown desired immune response-(yet) , and the reishi seems to be causing some anxiety what I perceive to be “high estrogen” symptoms- I’m very familiar with this feeling as I was on prescribes testosterone for a time years back. It’s like a free floating anxiety and almost hot flashes. (I guess this could be some type of immune activation as well?)

I’m taking the host defense alcohol reishi extract. Now wondering if this is even effective based on the previous posts.. it’s frustrating being on a low budget and possibly throwing money away on ineffective products.. though the reishi is definitely doing “something “...

Also the nac/ala combo is very nice and I actually am enjoying the diet.
Glad you're enjoying yourself. Sounding pretty positive so far, although perhaps the triterpene content of that product is under-dosed. :D

One of the big tell-tale signs with the reishi products are that IF they contain large amounts of triterpenes (and you haven't been chronically using them already), the expectation when you first start dosing them is that the previously broken purine nucleotide cycle becomes 'unstuck'.

The larger the triterpene dose, the faster and more acutely this may happen.

From my experiences, the triterpene dose correlates to the severity of the expected headache / head pressure. This is one of the reasons we suggest starting with a lower dose of reishi / triterpenes, along with an appropriate dose of the sodium benzoate + cofactors, to cushion the unpleasantness expected from this unavoidable remediation task.

I've seen a handful of people have acute anxiety symptoms that correlate with other symptoms suggesting neural inflammatory (immune) response, which settled down at the same time as the other symptoms, over a week.

Wim Hof breathing technique has been reported as helpful during these times.
 

joshua.leisk

Joshua Leisk (Researcher)
Messages
232
Location
Sydney, Australia
that sucks you don’t tolerate the R ala. I was skeptical that there would be any difference between this and the regular kind , (regular ala never did much of anything for me) however the R version is like a totally different thing for me, I notice a difference in energy/clarity within a half hour every time.
Someone else reported a bad reaction to a R-ALA supplement recently. Some fillers appear to be responsible.
"MEDICALINE ALINESS Alpha Lipoic Acid R-ALA 200 mg 60 TABLETS"
 

joshua.leisk

Joshua Leisk (Researcher)
Messages
232
Location
Sydney, Australia
Ready to jump in and try this protocol.

Is there any substitute for R-ALA? I have tried it before, it gave me some pretty bad GI upset.

Is there a benefit to using oat bran and lions mane for beta glucans? why not use a beta glucan supplement by itself?
One advantage of the oat bran relates to bile production, fibre and GI health. This is paradoxically why oat bran may also cause the most "stomach upset" issues in the beginning.

I'd try a different R-ALA supplement without fillers, if possible.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Is there any substitute for R-ALA? I have tried it before, it gave me some pretty bad GI upset
Someone else reported a bad reaction to a R-ALA supplement recently. Some fillers appear to be responsible.
"MEDICALINE ALINESS Alpha Lipoic Acid R-ALA 200 mg 60 TABLETS"
ALA can get into the mitochondria and pull out toxins, like mercury, which can make you feel sick. If this happens, one needs to have a methylation protocol in place, with adequate B1 and molybdenum to run the transsulfuration pathway to get it out of the body, if it will just redeposit somewhere else. Not good.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
ALA can get into the mitochondria and pull out toxins, like mercury, which can make you feel sick. If this happens, one needs to have a methylation protocol in place, with adequate B1 and molybdenum to run the transsulfuration pathway to get it out of the body, if it will just redeposit somewhere else. Not good.

Yes this is what I'm doing.

RE the triterpenes not sure yet if I simply need to take more of them, I might well do. I didn't realise triterpenes were so special as a viral attacking constituent, if anyone has any studies I can read on that one I would be interested.
 

Reading_Steiner

Senior Member
Messages
245
triterpene are also bitter, thats one way you can tell if it has any, for me its hard to differentiate from the alcohol ( ethanol or something else ? ), it doesn't taste like normal clean alcohol thats for sure.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
The LFE Reishi definitely tastes STRONG. Whether this means anything no idea. Just tasted some though and it's quite bitter. Not that I was doubting LFE products much but there we go.

I still just feel a tad dizzy most of the time, while I did get an initial improvement in symptoms to begin with, I seem to be back to my old self now. But too early yet, I am waiting until week 2 to see what effect it has + I need to also increase the oat bran dose today.
 

Reading_Steiner

Senior Member
Messages
245
Lets suppose for a moment that Joshua was wrong or that it doesn't work for us, then that begs the question, what is the fever about ? its obviously the beta glucans motivating the immune system, but what is it attacking ? could it just be random stuff thats floating around in everyones body but the immune system usually leaves along ? bacterias from the stomach ? other latent viruses like herpes voster ( shingles ? ), autoimmunity ? I don't know enough to even speculate accurately.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
Well I don't think we really know. For example some traditional medicines are potent against h1n1 like lomatium dissectum. But other traditionals like andrographis panciualta only work against 2 strains of dengue fever and do nothing for a third.

Immune modulators like ldn, inosine and others simply change the th profile in the body up and down regulating them. Ldn down regulates th17 for example.

I'm explaining this because it gives some context to the question of how do we know a fever is caused by immune modulation or direct anti viral action. It could be a th1 upregulation response (supposed to be very beneficial for ME) or a direct method of stopping viral replication in one or more viruses like cmv. Lomatium prevents h1n1 viral replication for example. I'm not aware it modulated th immune function.

Others might have more information.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
You could also speculate on auto immunity and other things. But on the whole a fever should be a good sign. At least even at lower temperatures have been good for me in the past.
 

jump44

Senior Member
Messages
122
Literally the only teo
Reishi products that I could find that state the triterpine content are orviedo and real mushrooms. The former is very cost prohibitive for me but the triterpine content is over 9 percent. Real mushrooms is over 5 percent. The one I’m taking mentions none of that, but like I said seems to do “something” so who really knows.. for the sake of being accurate I guess I’ll go ahead and get the real mushrooms product.
 

Hoosierfans

Senior Member
Messages
400
Hypothetically, a higher dose of EGCG could possibly counter the undesirable parts. I'd (completely) guess at 60-75mg of EGCG, instead of 25mg, if there’s a way to normalise this without reducing / removing gabapentin.

I am one of those that hasn’t responded to the Protocol (had some “immune response” but then that faded and went back to baseline...so no improvement) and am on gabapentin. Per @joshua.leisk’s hunch, I am going to try 75 mg EGCG for the next few days and then report back to see if that makes a difference. 👍🏻
 
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