ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[Marylib]

I think people have said many similar things over the last few decades. In this case, these things are really, really tiny.

.

@joshua.leisk I really enjoy the way you try to explain things to us in ways we can relate to. All those teeny tiny little MiRNA, etc.

 

[joshua.leisk]

@Hoosierfans - thanks for the report. I appreciated your letting us know that your symptoms are not post - exertional, unless I misunderstand you - PEM. I always thought that was the hallmark of ME, as opposed to MS, for instance - but maybe that's CFS. Or maybe that has changed over time for you. Whatever is happening, I hope this protocol works out really well for you.

I do rather like @Hoosierfans - apart from being just an all-round good person, she also has a very interesting set of symptoms and some variations outside the standard HHV serology, etc. I anticipate we'll get to the bottom of these fairly soon. The additional scope from the serology profile may be adding some fresh challenges, but I think we're getting somewhere.

Regarding the dietary parameters, as mentioned the other day on the PR discord, I somewhat rushed the 3.1 specifications document and later realised I was unclear about how the dietary plan needs to be implemented and managed.

I have just corrected this large oversight (sorry..) with additional guidance added to page 4 of the v3.2 spec - https://www.researchgate.net/public...for_Rapid_Testing_of_HASD_CFSME_Disease_Model

No other changes to supplements, etc.

 

[Reading_Steiner]

For those who are struggling to 'get it', are out of the loop or are just skeptical, Joshua isn't saying that he has done a bunch of advanced science experiments like Dr Davis would do and made new observations, he just looked at existing data and applied analysis and logic techniques with a good deal of biology and chemistry knowledge that he acquired through self learning, not formal academia. In doing this he was able to somehow make sense of what appeared to most people for a long time as contradictory research results, or things that in themselves, didn't lead experts to an obvious explanation of what the overall mechanism was, and what is the hidden connection between all these things. He created informed hypothesis and tested each one, make further observations, speculation. He was motivated by personal conviction that he experienced the same ME/CFS disease as everyone else, as a teenager but somehow he recovered.

The most relevant studies to this I believe are...
https://forums.phoenixrising.me/thr...ase-phenotype-in-me-cfs-lee-et-al-2021.82801/

https://www.healthrising.org/blog/2020/12/07/energy-production-chronic-fatigue-syndrome-system-wide/

https://www.healthrising.org/blog/2020/04/26/explaining-chronic-fatigue-syndrome-naviaux-prusty/

 

[godlovesatrier]

Hi Joshua,

Are you able to let us know which diseases patients have been diagnosed with? I saw hoosier mention that they didn't have a formal diagnosis. But I am sure you said the other two patients you treated did have an ME diagnosis?

Thank you

 

[Strawberry]

Most people I’m working with have been sick for decades. I’m hoping to get the treatment to a “once-per-day” administration with timed release.

Glad to hear that! Hopefully you have a protocol for heavy metals also? I’m certain I have lead and arsenic, just for starters...

 

[joshua.leisk]

Hi Joshua,

Are you able to let us know which diseases patients have been diagnosed with? I saw hoosier mention that they didn't have a formal diagnosis. But I am sure you said the other two patients you treated did have an ME diagnosis?

Thank you

So far:
CFS/ME - most people
Bipolar disorder
Anxiety
Autism
IBD
Schizophrenia
Rheumatoid arthritis
Multiple sclerosis
Ehlers Danlos Syndrome
Lupus
Sjogrens
Major depression
HIV
Autism
2 more people starting soon with Parkinson’s disease..

Most people have “disease cross-over”, having a personal selection of each “individual” disease. Although I have to say the IBD features pretty much everywhere, which will come as no surprise to anyone here. 😢

 

[Strawberry]

2 more people starting soon with Parkinson’s disease..

VERY interested to hear about this outcome.

 

[dannybex]

While glycine and cysteine are important for making glutathione, collagen synthesis, sleep, etc., cysteine is also used to make CoA, which becomes Acetyl-CoA.

I realize glycine is required for making glutathione, etc., but doesn't it also generate quite a bit of ammonia? Seems like I read it's one of two ammoniagenic (sp) amino acids...

 

[joshua.leisk]

Glad to hear that! Hopefully you have a protocol for heavy metals also? I’m certain I have lead and arsenic, just for starters...

Best general advice is to start with tests for that.
HTMA (provides useful “clues”, but the data needs to be interpreted as “what the body chose to incorporate into the strand”, which creates challenges) + a blood test for heavy metals.

For high-risk people (eating a lot of “large” fish”, exposed to industrial pollution, etc), I would definitely recommend doing this before eg. ALA or NAC, which are known to speed transport of mercury, etc past the blood brain barrier.

Depending on the results, people would normally look at chelation therapies. There are some really effective options here.

 

[joshua.leisk]

I realize glycine is required for making glutathione, etc., but doesn't it also generate quite a bit of ammonia? Seems like I read it's one of two ammoniagenic (sp) amino acids...

Good question - there’s evidence for both inducing and protecting against ammonia.

https://link.springer.com/article/10.1007/BF00998474

https://www.sciencedirect.com/science/article/abs/pii/0003986169901660

https://pubs.asahq.org/anesthesiolo...ia-Toxicity-Resulting-from-Glycine-Absorption

Overall, my opinion and experiences have been that it’s significantly more helpful than harmful.

I like it a lot.

eg. I personally use it as a sugar substitute and pour it into cereals, coffee, pasta sauce, etc.

My daily intake is usually between 30-60g

 

[joshua.leisk]

A week 7 update from someone I’ve been helping -

Don’t get too excited - this is only symptomatic remission. It’s based on 2.x protocol and the poor guy will still need to go through all of the immune response “joys” to be clear of this permanently. 🥲

 

[Reading_Steiner]

Whats the trick of the apple cider ? I know that many with the CFS/ME avoid drinking alcohol, so I've copied their advice and never tried it for fear of disease progression, perhaps this could be another clue that there is significance of the liver function ?

I hope to be able to try the 'succinate test' on Friday then everything else soon after, if it make any noticeable improvement for me it will feel like a miracle. Typical day for me at the moment is struggle to get up stairs, go slowly, spending lot of time on computer, any chemicals in the air unsettle me, feel nausea just resting looking on computer ( problem that started last summer ), go drive bike for 2 hours to pass the time and because clean air and adrenaline often seem to help me, after that my heart rate seem really high at rest and I feel sleepy, go to bed around 7pm and get up at 1am, will go back to sleep before dawn.

Open Medicine Foundation Open House May 2021 I wonder if this might contain any useful information for you ? also if you want a challenge of thinking, what mechanism explains how someone can go from mild to severe within the same illness ? could it be an increase in the % of cells that are occupied by what I call stealth virus, for lack of better understanding ? Could metabolic trap that is touted by Dr Davis explain how our bodies are susceptible to developing this problem at the point of onset whereas a normal person is able to full recover ? I wonder if it in some way limits the capabilities of the immune system that in some way allows the herpes virus to infiltrate and cause trouble. Also should we make another thread in the 'Treatment' section about this ?

 

[dannybex]

Good question - there’s evidence for both inducing and protecting against ammonia.

https://link.springer.com/article/10.1007/BF00998474

https://www.sciencedirect.com/science/article/abs/pii/0003986169901660

https://pubs.asahq.org/anesthesiolo...ia-Toxicity-Resulting-from-Glycine-Absorption

Overall, my opinion and experiences have been that it’s significantly more helpful than harmful.

I like it a lot.

eg. I personally use it as a sugar substitute and pour it into cereals, coffee, pasta sauce, etc.

My daily intake is usually between 30-60g

I agree that it's no doubt more helpful than harmful. It helps detox salicylates and I believe benzoates as well. I'm just probably a little too phobic about it after a hellish year or so of high ammonia levels (off and on) related to gut dysbiosis/c-difficile infection. I should give it a try...

 

[joshua.leisk]

Whats the trick of the apple cider ? I know that many with the CFS/ME avoid drinking alcohol, so I've copied their advice and never tried it for fear of disease progression, perhaps this could be another clue that there is significance of the liver function ?

I hope to be able to try the 'succinate test' on Friday then everything else soon after, if it make any noticeable improvement for me it will feel like a miracle. Typical day for me at the moment is struggle to get up stairs, go slowly, spending lot of time on computer, any chemicals in the air unsettle me, feel nausea just resting looking on computer ( problem that started last summer ), go drive bike for 2 hours to pass the time and because clean air and adrenaline often seem to help me, after that my heart rate seem really high at rest and I feel sleepy, go to bed around 7pm and get up at 1am, will go back to sleep before dawn.

Open Medicine Foundation Open House May 2021 I wonder if this might contain any useful information for you ? also if you want a challenge of thinking, what mechanism explains how someone can go from mild to severe within the same illness ? could it be an increase in the % of cells that are occupied by what I call stealth virus, for lack of better understanding ? Could metabolic trap that is touted by Dr Davis explain how our bodies are susceptible to developing this problem at the point of onset whereas a normal person is able to full recover ? I wonder if it in some way limits the capabilities of the immune system that in some way allows the herpes virus to infiltrate and cause trouble. Also should we make another thread in the 'Treatment' section about this ?

The apple cider vinegar capsules are dried powder and slow release into the large intestine. I talked about fruit vinegars in the second paper, as they closely resemble the output of a functioning gut microbiome - same microbes, same fibres, same organic acids. ❤

Those organic acids contain eg. Succinic acid, malic acid and pyruvic acid.. plus useful acetic acid (for Acetyl-CoA) etc. I had some frustrations with US vendors not supplying product information on request, so retired these in v3.x for NAC (Acetate, CoA, Cysteine).

There’s no alcohol.

The reason alcohol can’t be metabolised is seemingly the same reason DHT is high.

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

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

Seems to be downstream of retinoid metabolism

 

[joshua.leisk]

how someone can go from mild to severe within the same illness ? could it be an increase in the % of cells that are occupied by what I call stealth virus, for lack of better understanding ?

More infected cells, definitely.. however the rapid downhill one is simply *diet*.

It can be just increasing (high GI) carbs, or taking high dose B vitamins, trying to help their issues. (eg. I’m still not 100% convinced that the high dose Thorne B Complex we’ve been using has the most optimal B12 dose for this application, either. This is something that needs further testing and may be adjusted eventually.)

 

[splusholia]

I’m confused about where the ACV and glycine came from. I had thought we were just taking four substances: reishi, ECGC, R-ALA, lion’s mane. Obviously I’m missing something... oops

 

[Reading_Steiner]

Succinate confirmed working here. I took about 30 mg, the tablets are 100mg each in a packet of 20.
I wouldn't describe it as merely an adrenaline boost, it took me down 2 to 4 points on the 10 point scale of me/cfs severity within 10 to 15 minutes of taking it. I could describe it in quite a lot of detail, perhaps should do a thread in the treatments section of this website though.

 

[xebex]

I’m confused about where the ACV and glycine came from. I had thought we were just taking four substances: reishi, ECGC, R-ALA, lion’s mane. Obviously I’m missing something... oops

yes I thought this too. In the paper @joshua.leisk describes these four things but earlier in this thread there is a coloured chart with all the things, but I'm not sure ACV is on that chart either.

 

[godlovesatrier]

I think the ACV is part of the pre workup to see how the patient responds. I assume it's like the succinic acid - you take a bit as a challenge to see how the body responds first.

I think the succinic acid challenge is only mentioned in the v2 pdf version. From memory anyway. Here we go from v2:

 

[godlovesatrier]

If the patient responds well to the succinic acid and the ALA/ACV combo does that denote a good prognosis for the protocol then working @joshua.leisk ? As I understood it on my first read, I may have got that completely wrong.