ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[Reading_Steiner]

I had the true fever for 2 days consistently, then yesterday it seemed to calm, and so far today I haven't felt it either. I didn't do anything or change anything, its quite frustrating.

 

[godlovesatrier]

I'm completely wiped out this evening. Just been to sleep. I should say that I'm taking a lot of everything. This is why I feel like I do. Might dial it back a little tomorrow. I have to say tho even though I'm drinking 3 litres a day it's not really enough. I'm just gonna drink a lot now to try and feel a bit more with it so I can remain awake!

Doing 13g of oat bran 3x a day. 980mg lion's mane and 980mg reishi 3x a day currently.

Definitely not had a fever once. But if your body is fighting a particular virus maybe that's just what your body needs. To get rid of it. Also induced fever is a treatment at least in Germany. Hypothermia treatment I think it's called. So it's good your body is doing that as I'm not sure everyone responds with a fever.

 

[Reading_Steiner]

Just walked about 700 metres without stopping too much to test, this would be consistent with my walking ability this time last year. Started to feel really hard about halfway as if I was 'overdoing it' and by the time I got back I felt quite disorientated and dizzy. Do you think this is caused by a spike in nitrogen then ? I have to go walking around some hospital tomorrow urgh anyway. If this whole removing the viruses idea doesn't pan out I could do with having a legit sanctioned diagnosis for various reasons.

 

[jump44]

I'm completely wiped out this evening. Just been to sleep. I should say that I'm taking a lot of everything. This is why I feel like I do. Might dial it back a little tomorrow. I have to say tho even though I'm drinking 3 litres a day it's not really enough. I'm just gonna drink a lot now to try and feel a bit more with it so I can remain awake!

Doing 13g of oat bran 3x a day. 980mg lion's mane and 980mg reishi 3x a day currently.

Definitely not had a fever once. But if your body is fighting a particular virus maybe that's just what your body needs. To get rid of it. Also induced fever is a treatment at least in Germany. Hypothermia treatment I think it's called. So it's good your body is doing that as I'm not sure everyone responds with a fever.

13 g oat bran?? Isn’t the recd dose just 1000 mg at a time? I’ve just been taking half a tablespoon at each meal. Sounds like your eating a whole bowl haha.

 

[BrightCandle]

Has anyone added extra protein in the form of whey protein yet?

I don't mind eggs but cooking 4 of them and eating boiled eggs everyday it just grinds me down for some reason. Last year before Covid knocked me out and my diagnosis was not clear I was GETing and I was using exercise bands after the weights started causing injuries and at that point I also started using Whey Isolate. I tried vegetarian protein and it really set my guts off as did normal whey protein but isolate seemed to work well and still does. In the midst of last year when I was very severe it was sometimes one of the few meals my body would accept.

I hadn't used it in many months until I started this protocol and needed protein in 4 times a day, isolate has crept in the past few days to delay cooking eggs! Bulk do some reasonable ones but don't get the mint or caramel chocolate!

 

[godlovesatrier]

13 g oat bran?? Isn’t the recd dose just 1000 mg at a time? I’ve just been taking half a tablespoon at each meal. Sounds like your eating a whole bowl haha.

I very gradually increased my intake from what your taking to a whole tablespoon 3x a day. I think I'm gonna go back to 2 teaspoons 3x a day for the time being.

Bit more awake now after food, kefir and 250ml water. Thankfully!

@BrightCandle if you can eat the eggs that's great. But understand re cooking them all the time. I've been intolerant to eggs since I was about 12 so for me it's not ideal. I did try some egg white last week and had nausea plus headache for about 4 hours.
Same here really. Whey protein no good. Pea protein (very bad insulin spike). Isolate I've never quite managed but I think that's entirely my own fault. I'm going to get some isolate of some sort although open to recommendations for a UK brand without fillers or preservatives? And mix it with soy yoghurt as I'm hoping that'll buffer the acidity and sugar so it doesn't cause my problems with my bloody teeth...

 

[Reading_Steiner]

I have been boiling the eggs then keeping some for the next day. Heres what I've taken to eating often though,
get kidney beans in a can which have no chilli or anything added, boil in saucepan with water, strain in cullender, add salt so they don't taste naff, while they are cooking open tuna can ( oil ones are better ), and make grated cheese, I use cathedral city mild type, then you sort of mix it together on the plate a bit as if you were doing baked potato with baked beans tuna and cheese. Non british people are going to laugh at this crude form of 'cooking' of course.

 

[godlovesatrier]

I have been boiling the eggs then keeping some for the next day. Heres what I've taken to eating often though,
get kidney beans in a can which have no chilli or anything added, boil in saucepan with water, strain in cullender, add salt so they don't taste naff, while they are cooking open tuna can ( oil ones are better ), and make grated cheese, I use cathedral city mild type, then you sort of mix it together on the plate a bit as if you were doing baked potato with baked beans tuna and cheese. Non british people are going to laugh at this crude form of 'cooking' of course.

Student food

 

[lint7]

I had the true fever for 2 days consistently, then yesterday it seemed to calm, and so far today I haven't felt it either. I didn't do anything or change anything, its quite frustrating.

How high was the fever?

 

[lint7]

This sounds like one of those "protocols" where you overwhelm your body with a bunch of supplements and a weird diet and feel terrible for a couple of weeks (that means it's working!). Then when you stop you feel relatively good because you're eating a good diet and not flooding your system with supplements, and the recent memory of feeling like death makes you feel like you have improved.

 

[jump44]

This sounds like one of those "protocols" where you overwhelm your body with a bunch of supplements and a weird diet and feel terrible for a couple of weeks (that means it's working!). Then when you stop you feel relatively good because you're eating a good diet and not flooding your system with supplements, and the recent memory of feeling like death makes you feel like you have improved.

hey even if that’s all it is, it’s better than laying there doing nothing but wishing and hoping that within ten years there’s a magical treatment(which will most likely involve dietary adjustments and medications and supplements anyways).

 

[joshua.leisk]

Has anyone added extra protein in the form of whey protein yet? Isolated hydrolized to be specific. Standard whey protein doesn't do me much good, but isolate hydrolized appears to be really good apparently - thoughts?

https://uk.bodybuilding.com/store/d...ed-whey-protein-isolate.html?skuId=DYM4760056

I'm keen to get more protein into my diet once the protocol has done it's initial doo da

The protocol suggests that your protein intake should be coming up as your digestion allows. 120-150g / day is a suggested range.

 

[joshua.leisk]

Just walked about 700 metres without stopping too much to test, this would be consistent with my walking ability this time last year. Started to feel really hard about halfway as if I was 'overdoing it' and by the time I got back I felt quite disorientated and dizzy. Do you think this is caused by a spike in nitrogen then ? I have to go walking around some hospital tomorrow urgh anyway. If this whole removing the viruses idea doesn't pan out I could do with having a legit sanctioned diagnosis for various reasons.

This is consistent with other reports - if the (liver) cells are busy with proliferation tasks to replace cells consumed via apoptosis / immune response, the ability to oxidize fatty acids or provide sufficient energy, in general, is impeded. This reportedly goes up/down on a daily basis and then lifts.

 

[joshua.leisk]

This sounds like one of those "protocols" where you overwhelm your body with a bunch of supplements and a weird diet and feel terrible for a couple of weeks (that means it's working!). Then when you stop you feel relatively good because you're eating a good diet and not flooding your system with supplements, and the recent memory of feeling like death makes you feel like you have improved.

Well, the people in remission are still on all the supplements, however we're going to eventually need to test their metabolic markers at some point without any influences / supplements.

 

[joshua.leisk]

13 g oat bran?? Isn’t the recd dose just 1000 mg at a time? I’ve just been taking half a tablespoon at each meal. Sounds like your eating a whole bowl haha.

1000mg of beta-glucans at 8%.That's just under a tablespoon of oat-bran.

 

[joshua.leisk]

I had the true fever for 2 days consistently, then yesterday it seemed to calm, and so far today I haven't felt it either. I didn't do anything or change anything, its quite frustrating.

Additional beta-glucans has been reported to increase the immune reponse. The oat bran in particular gets mentioned a lot.. the comments indicate some acute effectiveness there.

 

[godlovesatrier]

@lint7 while it's difficult to tell without getting any actual tests (I'll be getting an OAT test next week and publishing it on PR so people can see what 14 days on the protocol looks like). I have an old baseline OAT test which I'll be using as a rough pre protocol guide, it won't be perfect but the main issues should no longer be present in the new OAT.

I would say though that it's only when I added the reishi and upped the oat bran that I saw a worsening immune response. Plus some of me pre markers on the OAT were in line with what Josh expected, most of them actually. Just one that wasn't.

But I do understand what you're saying about multiple changes and the like, I haven't changed my diet much overall, but I do intend to up the protein as the nausea and bowl irregularity stopped a few days ago.

 

[godlovesatrier]

1000mg of beta-glucans at 8%.That's just under a tablespoon of oat-bran.

Thanks for the clarity. It might be worth renaming or adding an extra line in the protocol so that this is clear? Just a thought

 

[joshua.leisk]

Thanks for the clarity. It might be worth renaming or adding an extra line in the protocol so that this is clear? Just a thought

Good advice. Consider it added to 3.3.
I'm also hoping to have a larger list of GDH altering compounds soon. @mariovitali's very helpful software has already churned out some interesting early data and this will get better with some additional training.

 

[joshua.leisk]

@lint7 while it's difficult to tell without getting any actual tests (I'll be getting an OAT test next week and publishing it on PR so people can see what 14 days on the protocol looks like). I have an old baseline OAT test which I'll be using as a rough pre protocol guide, it won't be perfect but the main issues should no longer be present in the new OAT.

I would say though that it's only when I added the reishi and upped the oat bran that I saw a worsening immune response. Plus some of me pre markers on the OAT were in line with what Josh expected, most of them actually. Just one that wasn't.

But I do understand what you're saying about multiple changes and the like, I haven't changed my diet much overall, but I do intend to up the protein as the nausea and bowl irregularity stopped a few days ago.

Also, n=1, but I’m someone who is continuing to take this protocol as a maintenance regimen, for longevity.. and I’m not the only one in this household.

As I don’t have CFS/ME anymore, I can happily consume this daily without attracting any fever / acute immune response. It’ll be interesting to see if this affects skin quality or visible signs of ageing. A lovely 94 year old lady is starting soon. I’ll be very interested to see if she has general quality of life improvements and specific improvements around her arthritis, etc.

(edit: that white powder is glycine ❤️)