ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[BrightCandle]

Sorry you had to go through this. Did the protocol help with the fatigue?

Yes.
On the Hummingbird scale
Worst last year = 3%,
before doing this protocol = 5%,
currently = > 50% maybe more, I haven't tested my body beyond it but I am pushing bands again, jogging about etc it is a stark difference even at my lowest.

In usual ME speak that is Moderate/Severe -> Mild/Moderate or a 1.0 point improvement. I suspect today is PEM but the capacity and limit is much pushed back. I may have crashed but I am cooking my own dinner rather than eating through a straw so even a crashed day is vastly different levels of fatigue.

Doing a proper test tomorrow getting my vaccine, will probably walk about 1.5 miles, furthest I will have attempted to go in 2 years.

 

[godlovesatrier]

Well I redid my budget a few times. It's definitely about £210 a month for me without the creatine or the glutathione. Personally I don't think either of these need to be in the protocol but just my 2 cents!

Really nice to see the cost in Euros and your thorough calculations @pamojja . I'm thinking of increasing the reishi to three caps thrice a day in two weeks. As per your comments.

 

[pamojja]

I'm thinking of increasing the reishi to three caps thrice a day in two weeks.

Note, its only 2 caps thrice a day. Which I consider still a lot.

Quite an impressive increase in triterpenes. From originally 1.5g of plain Reishi powder with variable, maybe ~30mg of triterpenes per day. Over experimentining with 3 caps (~120mg triterpenes), to now again double that again, with 6 LEF Reishi-extract capsules daily! (or even about 3 g of the dual-extract ~ 240mg triterpenes!). At €2,73 per day.

From 1.5 g plain Lion's Mane powder to the same amount, but now as standardized to 30% Beta-Glucan ext. (450 mg). At €0.36 per day.

From 3g Oat Bran to 35g per day! (with ~2g Beta-Glucan) At €1.18 per day.

A 3/4 LEF decaffinated Green Tea extract cap at €0.19 per day.

Makes already €4.46 per day for the 4 core supplements!


12 LEF Mix capsules at €2.19 per day for conviniently replacing the Green Tea extract, the B-Vitamin Complex and Vitamin E is therefore not really a reasonable option:

2 B-Complex capsules for €0.43 per day.
1 cap Vitamin E for €0.08 daily.

4 R-ALA caps at €1.07 daily.
2.4g NAC at €0.31 daily.
4 caps liposomal Glutathione (not available at the moment) €2.26 daily.
12g Glycine powder (not available at the moment) €0.33 daily.
125mcg Vitamin D3 €0.01 daily.
1 cap Multi-strain Probiotic, 50 Billion (only 2 left) €0.35 daily.
10 g Creatine Monohydrate (not available at the moment) €0.23 daily.
1 cap Cholinebitartrate €0.08 daily.
3 caps Forskolin €0.73 daily.
1g Vitamin C €0.01 daily.
(additional? - thought these haven't been tested yet?) 6 caps Beta-glucan €1.19 daily.

€7.08 daily for those 13 additional supplements to be constantly taken. Makes €11.45 total, or roughly €350- a month.

Provided everything available. If not as at the moment, one can easily add a further €100,- per month. Additionally the only initially taken 14g BCAA and 4g sodium benzoate daily.

Other reasonably priced bulk protein providers in the EU are https://www.bulk.com/uk/, https://www.myprotein.com/ and https://www.blackburndistributions.com/

 

[jump44]

Yes definitely expensive for those of us debilitated enough not to have a sustainable income. For me though at this point I don’t have a choice.

 

[godlovesatrier]

Ah maybe it wasn't your recommendation then ha! I wrote down to take 1300mg resihi when I next start up. Not too sure why I thought that now. I should have added a note to my excel sheet... damn

 

[godlovesatrier]

That was always my concern not so much with the protocol but how would those who don't work access it @jump44 . Or those who still have the savings of course which most don't

 

[BrightCandle]

No doubt it is expensive. Thankfully I still have savings from my business from before getting ill. I think it is costing me more than that, I doubt I could get it that low and I am having issues with a few of the items. I started out with just enough to do the first week and have been replacing what runs out since. I definitely knew within 10 days it was worthwhile to me.

 

[godlovesatrier]

Your improvements been amazing. Long may it last for us both. I'm quite impatient for the covid immune reaction to be over so I can get back on the immune herbs and really get my life back. It still hasn't sunk in yet but based on how I feel now I think things can only get better.

 

[Reading_Steiner]

I get really inconsistent results on this protocol and as I see it the main variables are diet, exercise / exertion or rest, and spacing of doses, e.g. 3 hour vs 5 hours.

If the balance is not being met around GDH : a-KGDH, then a single high net carb meal can induce PEM. The profile of those carbs and how this relates to blood glucose is of high importance.

When looking at the infected cell behaviour, the energy in the mitochondrial reactions is what controls latent vs lytic states. GDH is something which controls mitochondrial energy. There are other inputs. eg. Arginine increases mitochondrial energy via fumarate (think arginine in HSV-1/2 flare ups). Stress increases adrenergic signalling and increases energy from fatty acid oxidation. Sunlight / UV exposure increases ETC and ROS. Exposure to other forms of radiation may do the same thing.

From the serum, the immune system can detect and kill lytic cells. This is when we “notice” an infection - because it hurts when the immune system attacks the cells / tissues.

The immune system can’t easily see inside cells and requires the cell to signal for apoptosis when it detects that the “running code” is different to the “stored code”. This is mediated by NF-kB.

Adding further complication is that the cell appears to prioritise mTOR / protein synthesis over apoptosis. (“I cannot die until my work is done.”) The viral protein synthesis tasks drive mTOR up, by default.

Until you bring the energy in the mitochondrial reactions down and pull down mTOR, it appears that even if you’ve “fixed” NF-kB, the cell won’t signal for death / replacement.

Does that mean we want the cells to go into lytic state ? I thought we were increasing mitochrondrial energy by doing these interventions, and therefore supposed to be feeling better.

After the rough period I have had I am going to see if I can induce fever again by sustained rest and playing around with EGCG, possibly going higher on reishi. The highest I've done so far was about 100mg EGCG but that isn't the only variable in the equation I suspect, which complicated things. Will also increase glycine intake to the recommended amount.

 

[Martin aka paused||M.E.]

He/him, another pesky male in remission.

Today my back started to "resolve", it has felt fused and unforgiving for years but today I feel almost flexible, I can reach further to my toes having done nothing at all, my back just arches more. A lot of the pain went a week ago or so but now my back is feeling improved, this is one of the areas I would guess from the historical pain was/is infected.

Energy is good today, I am starting to jog up the stairs in my house just normally (I always used to jog around all over the place before I got sick) and I am moving with normal pace again without regard to energy. My broadband was broken this week and I had no issue spending 2 days testing routers and flashing firmwares and complex network setup as well as walking out to chat with the engineer who broke it.

Still having some coordination issues (dropped an egg for example) and fogginess mostly by the end of the day. I also spend most of my day now without headaches and the clarity is coming through at times. I haven't finished improving yet, still on 3.2 of the protocol I haven't moved across yet.

C19 Vaccine on monday, off the oats from now until some point next week as recommended and I hope that doesn't knock me on my arse, but since I was made worse by a C19 infection last year I am hoping for some of that sweet long hauler improvement from it in the end.

How did it take to get from severe to where you are with the protocol?

 

[pamojja]

..without the creatine or the glutathione. Personally I don't think either of these need to be in the protocol

Also for someone like me, who already supplements comprehensively since many years, there seem to be only 4 core supplements, as I indicated above.

Everything else I already supplement at various doses. Some like ascorbic acid at seemingly excessive doses, at 25 g/d for 13 years, with amazing results in remissions. Most remarkable with a walking-disability from PAD.

And since ascorbic acid isn't endogenously produced in humans as in most other mammals at similiar amounts - it additionally boosting endogenous glutathione production - I see absolutely no need for liposomal Glutathione in my case too (confirmed by lab-testing). Or the overpriced R-ALA. Without these 2 items its cuts down the cost by €3.33 daily already. By replacing if for €0.33 with 25 g vitamin C. Probably still not a viable option for many others.

 

[godlovesatrier]

I've also never tolerate ascorbic acid at any time. Causes me no end of issues. So I only use magnesium ascorbate in encapsulated form. I buy powder and make it into capsules.

Buffered vitamin c might work for some but magnesium ascorbates the only one that worked for me.

 

[Reading_Steiner]

how long does EGCG take to kick in ? could we take 20mg every 15 mins until we feel it doing something ? to find the correct level ? I wish there was a more scientific approach.

 

[godlovesatrier]

Any reason why you can't graduate up by 25mg for your daily doses over 48 hour periods until you see a change?

I took 25. Then 50. Then 75. Then 100 and then I either did 125 or randomly tried 200 - I forget which. But it was fairly straightforward to see the effect at those graduations. 125 was when I first noticed something and 200 when it was fully blocked.

I'm now at 157mg which is still very good but covid vaccines buggered up my baseline so I have no idea currently.

EGCG hits the bloodstream in 20 minutes like anything you take that's encapsulated in a capsule. For me personally it then seems to take maybe 30 minutes to have its full anti PEM and muscle fatigue (upon immediate exertion) effects. But only at the higher doses. 125mg up to 200mg.

Over the course of a week you should get a good idea of what does works. I'm holding at 157 currently. At this dose it blocks 95% fatigue. Between 157 and 200 it blocks 100%.
5% because when I do a lot I'm on the edge and if it tips over I start to get muscle fatigue but it usually lasts 30 minutes and disappears with water or r-ala.

 

[cogent_thought]

Another male-centric post.

Regarding beta-glucans, immunity and androgens etc;

We can see here that Trametes Veriscolor has no effect on androgen receptors (page 8)
Trametes versicolor(Synn.Coriolus versicolor)Polysaccharides in Cancer Therapy: Targets and Efficacy

I can't see any references to Turkey Tail/Trametes Veriscolor affecting testosterone/libido etc. in the literature or anecdotally online. May have less of an effect on 5-ar than Lion's Mane?

According to this paper the beta-glucan content seems somewhat interchangeable if not higher in Turkey Tail. Understandably this will vary product to product.
Measurement of β-Glucan in Mushrooms and Mycelial Products
I assume something beyond beta-glucan content matters in these mushrooms as we know they're complex beasts.

I'm tempted to continue on with the Turkey Tail rather than hop onto Lion's Mane which has seemingly lowered my libido in the past. It's a tough call because I don't understand if lowering libido/T/5-ar or whatever is considered a positive outcome for inducing the correct pathways for viral immune response. Thoughts @joshua.leisk ?

Personal sidenotes

So I have been trying to read and absorb the information in this thread whilst getting possibly a little over excited at the prospect of this combination on having some effect on my remaining fatigue and secondary issues. To be clear, I do not experience severe PEM, I do experience varying levels of post-prandial fatigue from carbohydrates which, it turns out are pretty tough to avoid as a human.

The more I read, the more I'm realising I've been inadvertently doing much of this protocol. I've incidentally been taking arabinogalactan which the Now Foods Additional beta-glucans contains. You can read about them here, they have seemingly been doing something positive for fatigue and immune system in addition to the gut. Great stuff, unfortunately not cheap for effective dosage.

I have previously had good success using this beta-glucan blend from Oriveda which is quite pricey, containing Maitake, Reishi, Cordyceps Militaris & Turkey Tail. This felt like an androgen booster, but probably too much so for use during this protocol. I'm unsure how much better than average that company's products are to justify the price anyway.

Excited to fast this week.

 

[ilmc]

Out of curiosity, I looked up reishi in my favorite food store: https://www.pit-pit.com/reishi-gemalen.html
Could be useful for people in Europe/Netherlands. Interesting information: when reishi is dried with higher temprature it gets a darker color + it should have a subtle bitter taste. This could explain differences in how it looks between brands.

I have pitched the protocol to my doctor but he wasn't really convinced (and I rather do it with full support). He was mostly concerned about the mushrooms (in particular beta-glucans) as he said my immune system is already overstimulated, especially phase 1 (he based this on the last measurements of the cytokines I think).

My immune system is also activated after an 'active' day. When I'm high in energy these are sympoms like a running nose, sneezing, postnasal drip, etc. Could be a pathogen or my immune system is just abused/misused to clean up stuff from anaerobic oxidation (lactate, etc.)...

 

[joshua.leisk]

I get really inconsistent results on this protocol and as I see it the main variables are diet, exercise / exertion or rest, and spacing of doses, e.g. 3 hour vs 5 hours.


Does that mean we want the cells to go into lytic state ? I thought we were increasing mitochrondrial energy by doing these interventions, and therefore supposed to be feeling better.

After the rough period I have had I am going to see if I can induce fever again by sustained rest and playing around with EGCG, possibly going higher on reishi. The highest I've done so far was about 100mg EGCG but that isn't the only variable in the equation I suspect, which complicated things. Will also increase glycine intake to the recommended amount.

To clarify, we aren’t looking for them to be lytic. That said, thanks to the beta-glucans, both lytic and latent cells are targeted by the immune system.

I would wholeheartedly suggest looking at your current diet in cronometer.com and the comparing that to the example diet.

The closer you can be to the protocol examples, the easier it is to fine tune eg. EGCG doses.

 

[joshua.leisk]

how long does EGCG take to kick in ? could we take 20mg every 15 mins until we feel it doing something ? to find the correct level ? I wish there was a more scientific approach.

This is what 75mg looks like. This is also why in 3.3, the 4th evening dose is much smaller than the 3 doses during the day.

 

[joshua.leisk]

Another male-centric post.

Regarding beta-glucans, immunity and androgens etc;

We can see here that Trametes Veriscolor has no effect on androgen receptors (page 8)
Trametes versicolor(Synn.Coriolus versicolor)Polysaccharides in Cancer Therapy: Targets and Efficacy

I can't see any references to Turkey Tail/Trametes Veriscolor affecting testosterone/libido etc. in the literature or anecdotally online. May have less of an effect on 5-ar than Lion's Mane?

According to this paper the beta-glucan content seems somewhat interchangeable if not higher in Turkey Tail. Understandably this will vary product to product.
Measurement of β-Glucan in Mushrooms and Mycelial Products
I assume something beyond beta-glucan content matters in these mushrooms as we know they're complex beasts.

I'm tempted to continue on with the Turkey Tail rather than hop onto Lion's Mane which has seemingly lowered my libido in the past. It's a tough call because I don't understand if lowering libido/T/5-ar or whatever is considered a positive outcome for inducing the correct pathways for viral immune response. Thoughts @joshua.leisk ?

Personal sidenotes

So I have been trying to read and absorb the information in this thread whilst getting possibly a little over excited at the prospect of this combination on having some effect on my remaining fatigue and secondary issues. To be clear, I do not experience severe PEM, I do experience varying levels of post-prandial fatigue from carbohydrates which, it turns out are pretty tough to avoid as a human.

The more I read, the more I'm realising I've been inadvertently doing much of this protocol. I've incidentally been taking arabinogalactan which the Now Foods Additional beta-glucans contains. You can read about them here, they have seemingly been doing something positive for fatigue and immune system in addition to the gut. Great stuff, unfortunately not cheap for effective dosage.

I have previously had good success using this beta-glucan blend from Oriveda which is quite pricey, containing Maitake, Reishi, Cordyceps Militaris & Turkey Tail. This felt like an androgen booster, but probably too much so for use during this protocol. I'm unsure how much better than average that company's products are to justify the price anyway.

Excited to fast this week.

I’m still doing research on other beta-glucans sources. There’s some interesting data on fermented shiitake and a few others.

The goal we have in mind here is “normalising” the hormones.

This also relates to females (PCOS, endometriosis), in the same way that it relates to males. Ovarian follicles are part of these disturbances
https://pubmed.ncbi.nlm.nih.gov/17134841/
(Note the hyperinsulinism and hyperandrogenism)

DHT is a 5-AR metabolite of Testosterone.

In the model, DHT is high, which becomes the dominant feedback input into the HPG, over e2, reducing GnRH->LH production, reducing gonadal T (->) e2 synthesis, proportionally.

DHEA is also generally low in reports. DHEA is an adrenal cortex derived metabolite which can be further metabolised into T, etc in hair follicles. DHEA, before it is metabolised, also antagonises the androgen receptor and acts to balance agonism of T, DHT on the androgen receptor.. this is similar to EGCG:
https://faseb.onlinelibrary.wiley.com/doi/full/10.1096/fj.10-167924

Every single hair follicle acts as a complete HPG, can produce all of the normal hormones and this also has implications for cortisol and immune response.
https://pubmed.ncbi.nlm.nih.gov/32522165/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3381079/

Part of the reason that DHT is high is due to a reduction in 3a-HSD -

https://en.m.wikipedia.org/wiki/3α-Hydroxysteroid_dehydrogenase

https://en.m.wikipedia.org/wiki/Aldo-keto_reductase

3-HSD metabolises DHT, allopregnanolone, alcohol and other metabolites. When it is low, the body cannot easily metabolise these things, which causes elevated serum levels for DHT and alcohol-related metabolites and low allopreg.

The goal here is to reach normal homeostasis. In this respect, we don’t want to reduce 5-AR below normal levels. We want it in the normal range.

Likewise, we want 3a-HSD normalised. This allows a normal amount of DHT, allopregnanolone to be synthesised and then metabolised.

In the same fashion, we’re not trying to antagonise the androgen receptor unduly - the goal is to restore the balance to the same levels as having normal levels of serum DHEA.

If this is correctly balanced, serum T, free T, e2, DHT should be observed as optimal.

These same issues are observed in cancer research.
https://clincancerres.aacrjournals.org/content/16/17/4319

One of the primary goals here is to get the ammonia production back to normal, apart from killing latent cells. In our model, that gets rid of PEM:
https://journals.physiology.org/doi/full/10.1152/ajpendo.00028.2010

Edits: mobile fat thumbs and UI. Clarified aspects.

 

[Calluna]

To clarify, we aren’t looking for them to be lytic. That said, thanks to the beta-glucans, both lytic and latent cells are targeted by the immune system.

What's unique about the beta-glucans that helps with targeting the latent cells? (Apologies if I've missed this anywhere, lots of info to digest )