ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[Elike]

And if I understand correctly, you say it is necessary to do the dieting. My 5 cents to this are: I highly suspect that you are right, olthough when one feels so down, I did exactly the last months loads of sugar ... so absolutely wrong. And something I wanted to share here is, 4 years ago I had one severe crash and also some hardcore gastritis and IBS issues, so I thought since I hade some food allergies (crazy amunt to be exact, glutein, kasein, fructose, lactose-intolerance and loads of things like yeast, eggs) - so I thought lets try the carbivore diet.
Which as hard, since I really dont like eating meat. So for 5 weeks, I ate nothing else but meat, sweet potatoes, green salad with only salt, olive oil and lemon, and some rice. Only water to drink. Plus loads of supplements.
This wasn't easy, but my gastritis kind of helped not to want to eat a lot...

And low and behold, I had an energy burst like I can't remember in the past 15 years.
Only problem was I weighed 41 kg at the end.
So I started to eat again more and slowly all the other problems started to flare up.

I am ashamed that I don`t eat like that anymore, if thats the solution, but on the otherhand my doctor was almost angry with my weightloss ( I am 168cm) - so I guess he could have involuntarily hospitalised me, if I dropped 1 or 2 kgs more....

I just wanted to share this here, as kind of evidence for the dietary side of it, oulthough I really didn't want to do that again in that extreme form...

 

[godlovesatrier]

Yes another issue if like me you only weigh 10 stone is that these diets are hard to maintain weight on. Your supposed to eat about 150g of fat to prevent weight loss. As my nutritionist told me years ago. But getting to this fat content without dairy is really difficult and exceedingly boring/tedious or just time consuming.

Even so I found that if I ate about 115 to 125g carbs per day I had all the benefits of both worlds without any of the issues. I think it's about finding the carb content that best suits your body. Gluten free also helps tons too.

It's really frustrating getting the diet how you want it with so many restrictions. I can't eat fruit due to an allergy either. But fruits a little over rated.

 

[joshua.leisk]

Did you just change/start the reishi triterpenes?

If so, it's expected this will start releasing that purine nucleotide cycle blockage and the "crash" is the ammonia being dumped. The headache could last a few days - this is normally why the sodium benzoate, etc is added. If this is correct, you could introduce that now and alleviate some of the head pressure, etc.

 

[godlovesatrier]

I switched to the LFE reishi on the 12th or 13th, one of those days. Yes I took 2 benzoate capsules thismorning as that seems to be hte hardest hitting of the doses.

Just took dose 2 - a bit later today as I had to make about 50 glycine capsules. The gylcine is way too bitter for my teeth to deal with so I have to encapsulate it.

I am taking 3800mg glycine 3x a day now.

Also the reishi extract has given me some abdominal upset, but not dieherrea and I keep getting heartburn occasionally with it (though this could be the R-ALA and the reishi extract mixing together in my stomach). It also seems to be giving me some really horrible gas. As I say be interesting to see if these all clear up in a few weeks.

 

[Reading_Steiner]

Any idea what symptoms or sensations we might look for that would be indicative that ROS is still high ? sounds like it might be worth for me to drop the carbohydrates again, I wonder if my total calories intake could also be too high. I'm on good reishi now but I haven't made my own EGCG tablets yet. I sleeped for 12 hours and I have a little bit of light sensitivity, I seem to get restless legs every night after sunset, energy is not great, feel like im in that scenario where im always recovering from PEM and never quite get rid of all of it, went out a couple times yesterday and that probably knocked me down a peg again you see.

 

[joshua.leisk]

I switched to the LFE reishi on the 12th or 13th, one of those days. Yes I took 2 benzoate capsules thismorning as that seems to be hte hardest hitting of the doses.

Just took dose 2 - a bit later today as I had to make about 50 glycine capsules. The gylcine is way too bitter for my teeth to deal with so I have to encapsulate it.

I am taking 3800mg glycine 3x a day now.

Also the reishi extract has given me some abdominal upset, but not dieherrea and I keep getting heartburn occasionally with it (though this could be the R-ALA and the reishi extract mixing together in my stomach). It also seems to be giving me some really horrible gas. As I say be interesting to see if these all clear up in a few weeks.

Are you sure you have glycine? Should taste a bit like stevia.

 

[joshua.leisk]

Any idea what symptoms or sensations we might look for that would be indicative that ROS is still high ? sounds like it might be worth for me to drop the carbohydrates again, I wonder if my total calories intake could also be too high. I'm on good reishi now but I haven't made my own EGCG tablets yet. I sleeped for 12 hours and I have a little bit of light sensitivity, I seem to get restless legs every night after sunset, energy is not great, feel like im in that scenario where im always recovering from PEM and never quite get rid of all of it, went out a couple times yesterday and that probably knocked me down a peg again you see.

Hypoxia, PEM.

You could always bump up the EGCG to say 50mg (or even 75mg, if needed) and test for a few days?

 

[godlovesatrier]

Are you sure you have glycine? Should taste a bit like stevia.

Bitter probably isn't the right word. I meant to say it tastes a little sharp. Sweet but slightly acidic. I got this one anyway: https://www.bulk.com/uk/glycine.html

70% off currently if anyone wants to stock up!

 

[(mokamoka)]

On the fourth day
I feel tired in general ...
Is there anyone who spent 20 days or a month here to tell us if he's feeling better?

What are the symptoms that they are trying to fix ..?

How are they feeling now?

For me depression and anxiety are the main form, and it is strange that most of you do not complain about this

 

[Reading_Steiner]

Just chronic fatigue syndrome symptoms here Buh... I am under 40 and have stamina and short term memory of a 100 years old man. Depression some drugs can help with but some depression is also caused by someone's life experiences, its something they gotta think over and understand, but its also something that gets stuck in your head like a habit, an addiction, so it can take years to get better. Doctors just throw antidepressent drug at everyone, its not very smart.

Also Joshua I am trying my best, takes a while to get materials, thankyou for all your assistance thus far !
i'm doing less and less but my energy still dropping, possibly its the start of feeling really ill, because godloves also experienced something similar if I remember correctly. let you know in a few days !

 

[(mokamoka)]

Just chronic fatigue syndrome symptoms here Buh... I am under 40 and have stamina and short term memory of a 100 years old man. Depression some drugs can help with but some depression is also caused by someone's life experiences, its something they gotta think over and understand, but its also something that gets stuck in your head like a habit, an addiction, so it can take years to get better. Doctors just throw antidepressent drug at everyone, its not very smart.

Also Joshua I am trying my best, takes a while to get materials, thankyou for all your assistance thus far !
i'm doing less and less but my energy still dropping, possibly its the start of feeling really ill, because godloves also experienced something similar if I remember correctly. let you know in a few days !

I didn't take SSRI

how many days you was tired?
How many days you are in this protocol ?

People here talking in sciences always, i hope i can see results, any body have postive or nagitive experience after 2-6-8 weeks share it here, I hope to see someone who has symptoms like mild anxiety like depression, stress

 

[Reading_Steiner]

Tired for 5.66 years so about 2000 days. In this protocol rapid change between up and down... sometimes loads of energy sometimes can barely do anything and feel as bad or worse than normal. I heard some people are having more anxiety than normal while doing this. So you want traditional medicine or something which help with depression ? sorry I don't know about that one, I never took any drugs when I had depression. I have takendrugs for panic syndrome, one was called Citralopram one was called Propranolol, the latter seems very good for anxiety so if you have a doctor maybe ask them about that one. As I said sometimes we don't need drug and can get over anxiety just by time and change of life situation, becoming more mature or changing our perspective on the world.

This one is only gonna be good I think if your trouble is caused by Herpes virus which stays in the body and hides away, which I think is what might be giving me chronic fatigue ( can't work hard or exercise without feeling ill ).

 

[jump44]

Pretty sure this isn’t a protocol for someone w just depression or anxiety. Cfs goes much deeper than that . No offense intended of course and maybe something here would help but i don’t know that it’s geared for that at all.

 

[BrightCandle]

Not sure I can say much definitively at the 7 day point. Have had some liver tenderness days, GI distress and generally feeling unwell for about 3 of those but that seems to be dissipating yesterday and today. I am left with head pressure and a bit of liver bloat but my actual headaches are all but gone and I definitely feel like I have more energy and less brain fog. I don't know if I still have PEM, I have increased activity a little today. I am hoping to get really bed ridden unwell this coming week so it fits the profile of expected behaviour as I am pretty certain all the drugs are right.

I may go back to fasting to guarantee the energy deficit although I am doing keto diet solidly at the moment (pee stick says I am in ketosis).

 

[godlovesatrier]

Yep I definitely continue to feel very tired and drawn. Spent most of the weekend in bed just resting. Definitely an immune response. Wasn't sure initially but it definitely is now. Sleep had improved tho and I don't feel as energised in the evenings. Which might be why sleep is better.

If it's anything like the protocol I did in 2018 I should get an energy boost in a few weeks.

I'm really not sure if the egcg is doing what it's meant to do though. But an oat test should help figure that out.

 

[Elike]

I still havent started it properly, I left out the sodium benzoate part, cause I cant find anything on sodium benzoate, taking it in this quantity, safety, use besides as a preservative etc.
Please can someone offer some links where I can read up on it.
I just cant find anything useful on google.

 

[godlovesatrier]

If you leave the benzoate out then you just won't get the nitrogen disposal aspect. Which means your headaches and general head pressure will be much worse and will last a lot longer. Hope this helps. @Elike

 

[(mokamoka)]

Tired for 5.66 years so about 2000 days. In this protocol rapid change between up and down... sometimes loads of energy sometimes can barely do anything and feel as bad or worse than normal. I heard some people are having more anxiety than normal while doing this. So you want traditional medicine or something which help with depression ? sorry I don't know about that one, I never took any drugs when I had depression. I have takendrugs for panic syndrome, one was called Citralopram one was called Propranolol, the latter seems very good for anxiety so if you have a doctor maybe ask them about that one. As I said sometimes we don't need drug and can get over anxiety just by time and change of life situation, becoming more mature or changing our perspective on the world.

This one is only gonna be good I think if your trouble is caused by Herpes virus which stays in the body and hides away, which I think is what might be giving me chronic fatigue ( can't work hard or exercise without feeling ill ).

Pretty sure this isn’t a protocol for someone w just depression or anxiety. Cfs goes much deeper than that . No offense intended of course and maybe something here would help but i don’t know that it’s geared for that at all.

I still havent started it properly, I left out the sodium benzoate part, cause I cant find anything on sodium benzoate, taking it in this quantity, safety, use besides as a preservative etc.
Please can someone offer some links where I can read up on it.
I just cant find anything useful on google.

Yep I definitely continue to feel very tired and drawn. Spent most of the weekend in bed just resting. Definitely an immune response. Wasn't sure initially but it definitely is now. Sleep had improved tho and I don't feel as energised in the evenings. Which might be why sleep is better.

If it's anything like the protocol I did in 2018 I should get an energy boost in a few weeks.

I'm really not sure if the egcg is doing what it's meant to do though. But an oat test should help figure that out.

Did any one noticed reduce or improved in libido or testosterone during the protocol,?Did any one noticed reduce or improved in libido or testosterone during the protocol,? Reishi and lions mane most effect it directly but not long term right?

 

[joshua.leisk]

Pretty sure this isn’t a protocol for someone w just depression or anxiety. Cfs goes much deeper than that . No offense intended of course and maybe something here would help but i don’t know that it’s geared for that at all.

Actually, we're including cohorts for depression and anxiety in the trial. @Buhmza has disclosed a number of things to me privately which indicate he'd be a good candidate for participating in a different cohort.

 

[joshua.leisk]

I still havent started it properly, I left out the sodium benzoate part, cause I cant find anything on sodium benzoate, taking it in this quantity, safety, use besides as a preservative etc.
Please can someone offer some links where I can read up on it.
I just cant find anything useful on google.

You might like this one - https://www.tandfonline.com/doi/abs/10.1080/17425255.2017.1262843?journalCode=iemt20

You'll need the full text, although Figure 1 is a quick overview and is available freely on pubmed - https://pubmed.ncbi.nlm.nih.gov/27860485/