ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[Martin aka paused||M.E.]

2 weeks on the protocol. 2 Weeks of diarrhea. No immune response . But Joshua tries to figure out what to do

 

[godlovesatrier]

Interesting replies here. All interesting reading too

The covid vaccine is making me grumpy and depressed at the minute. Immune reaction is pretty much on most of the time. So not pleasant. But still have plenty of energy. Feels utterly bizarre to spend most of the time able to just do "loads" of menial jobs and the like. Although mental clarity isn't great as I said due to the covid vax.

Definitely have been hit hard with mono/flu symptoms. Also probably made worse by mowing the lawn the other day. But it’s been interspersed with clarity/energy , which I never get with classic PEM. As a male however I admit I’m a bit concerned with the emphasis on androgen blocking and 5ar inhibiting- these things can cause issues that don’t just go away for some unlucky men.. however I am willing to take the chance if it ultimately helps the cfs but I do admit I find it somewhat concerning. I trust the other “pathways” will balance all this out.

What are the issues? Does it induce disease or lower t cell counts? Like Tagamet? Be interested to know.

Although like you based on my experiences so far I'll take this as a treatment until more science emerges.

@xebex you describe the same crash style as me. Sleepy then I rest, then it usually bottoms out or I have 48 hours of PEM and then it usually starts to lift. Although initially when I did the protocol PEM was much worse and seemed to go on for up to a week. This eventually lifted with the higher egcg dose which seemed to be critical to be honest as a protocol supp.

I used to get all the aches and pains you got but since taking Andrographis Paniculata all those pains went. This was a few years ago and I totally dismissed it as irrelevant. But now it makes me wonder when I took andro I had pain in the same places. Had to be viral?

Really pleased your doing well @BrightCandle and thanks for clarifying about him/her Hope the vaccine helps your long covid!

 

[joshua.leisk]

NAC lifts the toxic/flu brain feeling but doesn’t help the muscles in my back which are my main trigger for a crash.

How much choline is in your diet?

 

[Boba]

@BrightCandle Happy to read about your progress with the protocol. May I ask if you‘re affected by fatigue and if it helps?

 

[joshua.leisk]

2 weeks on the protocol. 2 Weeks of diarrhea. No immune response . But Joshua tries to figure out what to do

I'm quietly optimistic that the diarrhea is the same temporary phase people report during GI immune response, but we'll see - quite a number of fresh variables in play. Some big dietary changes from a zero fibre diet. I think it'll be a little rough.

I'm updating the preview of v3.3 to remove the Time brand reishi oil, as I'm now not convinced it's doing what it's supposed to. There were early good reports, here earlier.. Is anyone here successfully using it?
(..It looks like I'm unintentionally turning into a Life Extension shill)

I've also updated the feeding tube food section to 3 meals instead of 4 and added a brand of oat bran which states beta-glucan content. I've scaled back the calories in the feeding tube section to what may be a more appropriate target in this scenario.

I think it's quite possible the "oat fibre" product may be different / contain a different amount of beta-glucans. I can't find a lot of conclusive data on this. I think the previous oat fibre product was the outer membrane and the beta-glucans are in the endosperm. This might be a big piece of the puzzle for a lack of immune response, however there are other beta-glucan sources in the schedule, so possibly not.

I've also altered the feeding tube fat source to soy lecithin oil. I'd expect this to assist with choline and PC pathway needs, while hopefully improving flow through the tubes.

 

[godlovesatrier]

Nice work @joshua.leisk

 

[xebex]

How much choline is in your diet?

I have a fairly high choline diet I would say.
I have issues with phosphatidyl choline, Benadryl and Mestinon.
Why?

 

[joshua.leisk]

I have a fairly high choline diet I would say.
I have issues with phosphatidyl choline, Benadryl and Mestinon.
Why?

Just curious about muscle AChR.

So, NAC may have helped with the acetyl-coa. Did you try the water, BCAAs for the ammonia / urea? I consider the neck tension as a sign of ammonia/urea.

 

[xebex]

Inhab

Just curious about muscle AChR.

So, NAC may have helped with the acetyl-coa. Did you try the water, BCAAs for the ammonia / urea? I consider the neck tension as a sign of ammonia/urea.

More water just gets peed out instantly I dont Notice any effect from more water. I havent tried BCAAS yet they are on My list. I don’t get neck Tension but my thoracic spine feels permanently inflamed and if I do any kind of traction movement it feels tight and can make me crash - massage around that area relieves it very well. All the muscles spasm around the area too though I’ve managed to stop that abit with an infrared heat mat. The muscle spasm in my back is my worst symptom, for example I can lie down all day and compose music to a cognitively demanding level yet I can’t stand up for more than 20mins without the muscles spasming and causing a crash. I can walk longer than I can stand still. I can walk up and down stairs all day but standing to cook is very difficult. Sitting at a desk is almost impossible.

 

[jump44]

Interesting replies here. All interesting reading too

The covid vaccine is making me grumpy and depressed at the minute. Immune reaction is pretty much on most of the time. So not pleasant. But still have plenty of energy. Feels utterly bizarre to spend most of the time able to just do "loads" of menial jobs and the like. Although mental clarity isn't great as I said due to the covid vax.



What are the issues? Does it induce disease or lower t cell counts? Like Tagamet? Be interested to know.

Although like you based on my experiences so far I'll take this as a treatment until more science emerges.

@xebex you describe the same crash style as me. Sleepy then I rest, then it usually bottoms out or I have 48 hours of PEM and then it usually starts to lift. Although initially when I did the protocol PEM was much worse and seemed to go on for up to a week. This eventually lifted with the higher egcg dose which seemed to be critical to be honest as a protocol supp.

I used to get all the aches and pains you got but since taking Andrographis Paniculata all those pains went. This was a few years ago and I totally dismissed it as irrelevant. But now it makes me wonder when I took andro I had pain in the same places. Had to be viral?

Really pleased your doing well @BrightCandle and thanks for clarifying about him/her Hope the vaccine helps your long covid!

look up post finasteride or accutane syndromes online and you’ll find plenty of horror stories of men taking these 5ar inhibitors and being severely damaged.. now, I -am not- saying that the ones in this protocol do the same thing… however there are a few of them in here being taken at high dosages- and it appears Joshua is saying it’s a main goal of this is to really knock down/block the androgen receptors etc. Tjis isn’t something males should necessarily be taking lightly if they are predisposed to issues(which unfortunately there’s no way to really tell beforehand), so it’s just something I’ve had In the back of my mind.

 

[godlovesatrier]

Which are the 5ar inhibitors?

 

[godlovesatrier]

So accutane syndromes - related to the male component required to make a baby producing offspring that are deformed etc? I won't be having any babies so that's ok.

Fetal retinoid syndrome is a characteristic pattern of physical birth defects in a baby that has been exposed to retinoids during pregnancy. The best-known retinoid is isotretinoin (Accutane), a drug used to treat severe cystic acne. Babies exposed to retinoids during pregnancy may have a wide variety of symptoms.

As for the former one it's not clear how it links up with 5ar inhibitors.

post finasteride
https://www.sciencedirect.com/science/article/pii/S235228951930061X

This condition, termed post-finasteride syndrome (PFS) is characterized by sexual side effects (i.e., low libido, erectile dysfunction, decreased arousal and ...

https://www.pfsfoundation.org/frequently-asked-questions/

But a handful of PFS patients have reported to us that they've felt 80%, 90% or even 99% better over a period of one to five years. Other patients report that they become more stable and learn to better cope with the condition over a period of one to three years, rather than return to full health.

So if I am grasping it well (no pun intended) the 5-ar inhibitors reduce sex drive. To be honest I can't say I've seen that myself, Steiner hinted that he hadn't seen that manifest either. But that would be the warning sign right? Along with hair loss, testicular pain, lack of erection, or difficulty getting an erection, penile thickness, etc?

Correct me if I'm wrong.

 

[godlovesatrier]

I've moved the 5-ar comments to a new thread @jump44 : https://forums.phoenixrising.me/threads/herpes-veridai-protocol-5-ar-inhibitors.84232/

 

[YippeeKi YOW !!]

2 weeks on the protocol. 2 Weeks of diarrhea. No immune response . But Joshua tries to figure out what to do

Courage, @Martin aka paused||M.E., something you have in abundance ..... tho 2 weeks of bedbound diarrhea sounds pretty awflul ...

 

[Martin aka paused||M.E.]

Courage, @Martin aka paused||M.E., something you have in abundance ..... tho 2 weeks of bedbound diarrhea sounds pretty awflul ...

It is

 

[BrightCandle]

I'm updating the preview of v3.3 to remove the Time brand reishi oil, as I'm now not convinced it's doing what it's supposed to.

Yep I bought life extension as I am not convinced. But now there are potential issues with the oat bran as well this aspect is proving to be challenging to get right and likely explains my lack of illness. Stopping the oats left me shattered today which is an interesting response to that change, I'll finish the Time spores middle of the week and be on Life extension onwards.

 

[BrightCandle]

@BrightCandle Happy to read about your progress with the protocol. May I ask if you‘re affected by fatigue and if it helps?

I spent most of last year in bed with meals being brought to me unable to move far or really spend much time sat up let along walking or doing anything. I have suffered a few big PEM events that dramatically decreased my energy capacity and the one March 2020 after catching Covid19 was the worst but I had ME before then and had become house bound Jan 2020. I was fatigued all the time, house bound but thankfully improved a little from last year stuck in bed. So absolutely I had fatigue, PEM definitely with a very small capacity, I have everything on the CDC list for the condition including both optionals and POTS as well along with high basic heart rate when upright.

 

[Boba]

I spent most of last year in bed with meals being brought to me unable to move far or really spend much time sat up let along walking or doing anything. I have suffered a few big PEM events that dramatically decreased my energy capacity and the one March 2020 after catching Covid19 was the worst but I had ME before then and had become house bound Jan 2020. I was fatigued all the time, house bound but thankfully improved a little from last year stuck in bed. So absolutely I had fatigue, PEM definitely with a very small capacity, I have everything on the CDC list for the condition including both optionals and POTS as well along with high basic heart rate when upright.

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

 

[jump44]

edit wrong thread

 

[pamojja]

(..It looks like I'm unintentionally turning into a Life Extension shill)

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/