ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[godlovesatrier]

Good it's less severe. I definitely recover more quickly and am less severe but I thiamine my PEM was almost entirely blocked. Of course on its own it's not enough.

I'm at 75mg egcg this for me seems to be a lot better a dose. Although I suspect potency of the egcg also plays a role between brands.

Hope your gains continue good luck!

 

[pamojja]

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

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.

About doses and triterpene content again: In the dosage chart the reishi alcohol extract 1:1 is given at 3 times 500 mg per day. Since a 1:1 extract contains the same amount as the constituents of a plain reishi powder, we assumed plain reishi powder just as effective.

At an other place in this meanwhile long thread you mentioned the daily needed triterpene would be 40 mg 3 times a day. Therefore 4 capsules of LEF reishi extract would be needed for that daily amount of triterpenes. Adding up to even 1760 mg of the LEF standardized reishi extract. So even more than indicated in the dosage chart?

With the added experience of LEF's reishi extract, how does it weight-wise compare to plain reishi powder?

Contrary to the initially assumed triterpene content of plain reishi powder, isn't it much stronger?

 

[godlovesatrier]

I remember your post about this @pamojja thought you raised some good points. Would be interested to know what others think.

 

[themjay]

Longecity have extensive, indepth threads dedicated to reishi and other mushrooms that are well worth searching for. All questions raised here are largely answered there.

 

[pamojja]

All questions raised here are largely answered there.

Just searched for Reishi at Longecity, read the first 6 threads and didn't find answers to my questions. Would I find it if I read the first 60 threads? Unlikely.

 

[joshua.leisk]

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?

I’d suspect you’d get “sick” and go through a similar process to others, yes. Perhaps milder, but I’ll likely regret saying that later.

Given the applications, it’s something I’ll be continuing as a daily maintenance protocol, indefinitely.

 

[godlovesatrier]

Given the applications, it’s something I’ll be continuing as a daily maintenance protocol, indefinitely.

Interesting your taking it long term and maybe not surprising considering lots of people take equilibrant long term and valtrex/valcyte was reported as being required long term in some patients. Although not everyone it seems but those reports exist.

Still if it works that's great. I'm definitely not as energised today as I was yesterday after my little bout of graded exercise, whilst my legs don't feel fatigued my body feels very tired like if I were to exercise it would probably set me back. Overall it still doesn't feel like remission. This is Day 17 for me. I do feel loads better this week than I did last week, this appears to be down to the increase in egcg to 75mg, whereas 25 appeared to do nothing. I am not really sure though at this point what else I can do to further increase the bodys ability or capacity to heal. A diagnostic test like an OAT might help to see what's going on and what needs tweaking, but I am waiting another 4 or so weeks before I get this. I have it ready to go though already.

 

[Hoosierfans]

Hey guys — so most of you know I have been on various parts of the protocol for a couple of months now. With the exception of one symptom (more on that later), I haven’t responded with the expected immune response / viral killing as expected. Trying to discern why and here’s a thought....

As listed on the protocol chart, Reishi is for three terpenoids (for immune system to see the cells), Lions Mane and Oat Bran is for the Beta Glucans (so the immune system goes ahead and activates and kills the cells).

Here’s the issue — I am not on oat bran and can’t take Lions Mane (except a baby dose). So am I missing one whole piece — the Beta Glucans?? My Reishi (Real Mushrooms brand) says it contains > 25 % beta Glucans, so I assumed I was getting it from the Reishi alone this whole time (2 mos now). But maybe not?

what say you @joshua.leisk or anyone else???

 

[godlovesatrier]

Can't comment on beta glucans much as that's a whole new experiment for me.

However I can comment on other immune modulators like inosine or astragalus etc. I would say if your getting a tiny dose of these well the immune activation would be way too low. So it just wouldn't have any effect (the triterpenes). Just my 2 cents.

What happens when trying the oat bran and lion's mane? Do you have some atomic scales so you can measure out tiny doses like 50mg and slowly titrate up over several months?

But as you have auto immunity Dr Chia found oxymatrine turned on auto immunity in patients who were predisposed to it. My worry is that with any immune modulator your activating the immune response and highetening the auto immunity. Which could make you much worse. That was my worry when you first mentioned the auto immunity in relation to any immune modulator.

 

[terry_anova]

Will soon run out of Herba Pharma Reishi Tincture extract, I think it's 'weak', that's just my gut feeling, will be switching to https://www.mycomedica.eu/eshop-reishi-triterpen.html in 5 more days, was recommended on the advice of lady named 'Denisa' and LEF Reishi Complex will take sometime to arrive from the United States to Europe. As well as other brands coming from China and other places in USA.
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Decided to test out my PEM response by doing some heavier exercise, seem to have a reduction in fatigue at this stage, but likely because of ECGC 50mg and LOLA and BCAAs and Succinic Acid.
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Still had the after workout brain fog and fatigue and pain behind my eyes. A rough night, still was dazed this morning with noticeable pain behind the eyes, then this afternoon seems to have cleared only to move towards pain in my throat. This time the Fatigue was less than the I don't want to do anything type of Fatigue and Brain Fog: I did the same type of workout as before.
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Have since upped my dose of Lion's mane to the recommended levels.
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Have to say it's my 7th day with Reishi and 18th Day with Spironolactone and the other Immune Supplements I was taking.

 

[JES]

Yep. If I add immune stimulants like astragalus, reishi or any other immune stimulant for that matter, my symptoms generally get worse in a matter of a couple of days. I tried a supplement with beta glucans several years ago and it put me back to bed with the most horrific brain fog and sick feeling, no doubt due to the stimulation of my immune system. The problem is that even a small dosage causes worsening of symptoms.

The question then becomes, what do these immune stimulants really do other than activating an already heightened immune response? If the idea is to actually kill off some viruses with active ingredients of these compounds, you would typically need a fairly large dosage and even that might have little direct antiviral effects. In vitro many of these compounds are good at killing viruses, but in vivo is an entirely different story.

 

[godlovesatrier]

Yep and we've discussed the in Vivo potency of quite a few at length on other threads. It's certainly a huge factor. Potency can be really low in Vivo.

Must admit I've never tried beta glucans. All I know is that things like inosine give me loads of energy within a few hours or a day of taking a decent dose. I just think the glucans have made me dizzy on the whole but considering I am taking them with so many other things. It's very hard to know.

 

[Hoosierfans]

What happens when trying the oat bran and lion's mane? Do you have some atomic scales so you can measure out tiny doses like 50mg and slowly titrate up over several months?

But as you have auto immunity Dr Chia found oxymatrine turned on auto immunity in patients who were predisposed to it. My worry is that with any immune modulator your activating the immune response and highetening the auto immunity. Which could make you much worse. That was my worry when you first mentioned the auto immunity in relation to any immune modulator.

I haven’t tried oat bran yet; Lions Mane causes hives and increased dizziness.

But your response raises the Million Dollar Question of @joshua.leisk’s Protocol, which he and I have discussed — whether the Protocol is appropriate when one has significant auto immunity. His view (and correct me if I am wrong Josh ), is that all autoimmunity can be cured through his approach because all autoimmunity is caused by latent viral cells (whether HHV-6, EBV etc) which cause the body to produce B cell antibodies. If you eliminate the latent viral cells (via the Protocol), the autoimmunity will also disappear as there are no more cells causing the body to produce rouge antibodies. Thus it’s appropriate (dare say necessary) to induce a heightened immune response to rid the body of latent viral cells and therefore any autoimmunity.

Ive discussed this at length with @Learner1 and (correct me if I am wrong love! ) and she does not agree that all autoimmunity is viral cell driven.

So the Million Dollar Question is — for those of us with significant autoimmunity, is the Protocol appropriate?

So far I can’t say I am worse for having tried it (except an addition of high dose glycine and taurine that was recommended just for me which resulted in a severe fainting episode earlier this week). But I also have not seen my main neurological and autonomic symptoms improve either.

interested to hear others thoughts....

 

[godlovesatrier]

To be honest I don't think it's all viral cell driven either. For me it's more the fact that if a few people all have the same viruses all get the same infections but ultimately half of them remain healthy well into their later years, then there has to be a genetic factor there for it to be like that.

It makes sense that a heightened immune response would be vital to clear the viruses out. Although b cell apoptosis is a whole other matter, we haven't really gone into detail about this on this thread at all. From everything I read before this thread came along, it was a rather tricky and difficult thing to do, hence why Dr Lerner used Valcyte and other drugs to achieve it and it took years usually.

If you're no worse off then that seems like it might be worth persevering with I'll say that much. Like you I don't feel worse. In fact this week so far I am actually feeling a lot better, but this experience has been a tad bumpy so I am waiting to see if this "new" baseline irons itself out. If it does I've returned to a state I haven't been in for about 24 months. But only time will tell and I've learnt never to get excited with ME.

In my case I must clear this inflamation at the cranial cervical junction and I must get the dizziness to abate (on top of the PEM of course and those standard ME factors). For it to really be effective.

 

[Rufous McKinney]

Give it a leisurely browse ....

I tried to sales pitch my husband, it didn't work. I indicated there seems to be a cure, here in this 39 page document. If only somebody would help me.

He resumed reading his New Yorkers.

 

[Hoosierfans]

Hey all, just wanted to give y’all a heads up and warning to be careful... on Saturday I had posted:

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

Well turns out I was correct....on Tuesday morning I got up, walked down to my fridge and blacked out cold on my kitchen floor. Normally when I have a syncopal episode I feel them coming on...not this one. I got a second or two and then bam I was on the floor. Thank god I didn’t hit my head. When I came to I tried to crawl to the stairs and couldn’t even make it there...by then my kids heard me and came running. I slugged down some water and put on my bp cuff and I couldn’t even get my bp to register (it goes down to 70/30). In fact, I couldn’t get it to register for 15-20 minutes even laying down. I’ve had plenty of fainting episodes but this was the worst it ever has been.

josh and I problem solved and yep, way too much glycine and taurine given my body size, the fact that I’m on other gaba meds. So please please please be careful when adding things from the protocol, especially in some of the big doses that are recommended.

 

[Rufous McKinney]

Normally when I have a syncopal episode I feel them coming on...not this one. I got a second or two and then bam I was on the floor. Thank god I didn’t hit my head.

oh GOSH please be careful!

 

[terry_anova]

josh and I problem solved and yep, way too much glycine and taurine given my body size, the fact that I’m on other gaba meds. So please please please be careful when adding things from the protocol, especially in some of the big doses that are recommended.

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That sounds nasty. Benzos + GABA Modulators = GABA Comma, I've read stories where people messed with Phenyl-Gaba and Fasoracetam at sufficiently high doses, to cause them visit the ER, of course once it clears the system it's ok. The Brain rewiring caused by Benzos, is also of concern, so you'd have to respect dosing schedules and any tapering or loading like seriously.
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Personally I use Benzos when I'm desperate for sleep, but then they always mess my sleep 2-3 days later when the brain rebalances from all the fake GABA, making them not that useful.
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Two things I didn't add from the protocol are R-ALA and NAC but that's because of very high Mercury Burden I had. These two I react, especially the R-ALA - NRF2 pathway. Instead I use Chinese manufactured 'Emeramide', some folks used it and felt amazing then crash really hard afterward. For me it does the trick of ROS reduction at really low doses.
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[godlovesatrier]

I am so so pleased you didn't hit your head. Christ that sounds so close. What Rufous said. Take care.

 

[godlovesatrier]

Seeing some big improvements this week and today is no different. Had loads of energy all day, symptoms are a lot better too. Neck and occipital swelling has been minimal all day. But more importantly I actually did graded excercise again today 1 minute 30 on a free standing resistance bike and no PEM or muscle fatigue. I'm quite shocked by this.

I will do 2 minutes tomorrow and see how I get on.

Lots of changes too:
1. Mood this week feels like my pre ME mood, much happier, I have energy to have proper conversations with people all day long at work.
2. I seem to feel tired or I know when to stop, this might even be better than I felt before I had ME to be honest. Maybe this is the protein the lack of carbs or the GDH inhibition effect?
3. Sweat glands smell like they used to! I now stink a bit ha! But this was what it was like pre-ME.
4. Acne has come back, again this is what it was like pre-ME. I know R-ALA gives people acne but it still seems relevant.
5. PEM and fatigue might be coming under control but I can't say if it is yet until I've been on the protocol another week.
6. Dizziness might be improving, need to keep monitoring this symptom.

I do think removing carbs from my breakfast and reducing my carbs by half at lunch has probably sped things up a tad and give me the more sustained/stable energy boost. But I tried to do this months ago and it simply didn't have this effect and when I exercised I was just wiped out and when I Say exercise I mean small amounts like 30 seconds or something.

So I am excited to see what next week brings.