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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Purported cure for Latent Virus sustained ME/CFS by Joshua Leisk and Aline Nocon

joshua.leisk

Joshua Leisk (Researcher)
Messages
232
Location
Sydney, Australia
Thank you Learner ! yes I can see why it may seem that way to people who have watched many 'treatments' come and go. OK here is a picture of the exact things I am taking. In many cases they are in line with the dosage on the label, if not then I roughly follow Joshua's timetable, adjusting weights down if I think it might be too strong or if I am just starting it ( to check for allergies etc ). He recommends for example not taking full amounts of Reishi to begin with. Because its a liquid I lack an accurate way to compare the amount to what is stated in grams ( all reishi products vary anyway in their active ingredient amounts ), so I just judge it by how much is in the pippette, say 1 inch long amount, either once or twice into a cup of water. I use a digital scale to measure glycine and sodium benzoate and oat bran ( only taken the latter once so far ). Something you all might find interesting is that my urine has changed color to bright yellow, radioactive looking or florescent yellow like a high vis jacket.

View attachment 42795
Well done. :D

These look good.
I may have missed it - which reishi product are you using? The triterpenes / triterpenoids are the active ingredients. We're targeting around 40mg of triterpenes, at least 3x a day. This is what stops the viral alterations in the cell and allows them to signal for apoptosis... which then requires the immune response from the beta-glucans.

If anyone is unsure of their vitamin D status, I'd personally err on the higher side. The macrophage response from the beta-glucans requires normal serum D3 levels.

Also, my apologies for how sick you're going to feel for the next few weeks.. no one has enjoyed this part much. :D
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
don't think that @joshua.leisk proposed it as anything other than something hopefully helpful, that he and his partner have put an absolutely staggering shite-load of effort, work, thought, and research into.

To dismiss it as 'purported', as tho is had been proposed, as so many other protocols have been, as the absolute ne plus ultra of treatments, is unfair and quibbling.
If one listened to last week's OMF presentations, as well as the many other findings of the researchers, doctors and patients over the past few years, it is clear that ME/CFS is not one disease but rather a set of symptoms that can be due to spinal issues, other infections besides herpes family (cocksackie, enterovirus, chlamydia pneumoniae, SARS family, Lyme, Bartonella, etc.), mycotoxins, heavy metals, gut dysbiosis, autoimmune antibodies, nutrient deficiencies/imbalances, endocrine dysfunction, etc. generally found in different combinations with different comorbidities in different patients.

It is highly unlikely there's a single cure for all of the above, though it certainly would be convenient if there were.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
I have to agree. We are seeing so many subsets in this disease from all sorts of different studies. I think the treatments will be unique to each. I'm not far into Josh's protocol but I am still feeling quite "high". I will see how I sleep tonight. It makes me think of the over and under methylation research. Which shows two distinct groups within that, which require different approaches.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
If one listened to last week's OMF presentations, as well as the many other findings of the researchers, doctors and patients over the past few years, it is clear that ME/CFS is not one disease but rather a set of symptoms that can be due to spinal issues, other infections besides herpes family (cocksackie, enterovirus, chlamydia pneumoniae, SARS family, Lyme, Bartonella, etc.), mycotoxins, heavy metals, gut dysbiosis, autoimmune antibodies, nutrient deficiencies/imbalances, endocrine dysfunction, etc. generally found in different combinations with different comorbidities in different patients.
Which, to the casual observer, would make them different diseases with occasional and unpredictable intersections.
It is highly unlikely there's a single cure for all of the above, though it certainly would be convenient if there were.
I agree. It absolutely would be convenient if at least something had some beneficial effect on pretty much everybody, whether it's the total Holy Grail or not.

But there's another possibility: that the OMF, Drs, researchers, and patients are throwing everything at the wall and waiting to see what sticks, in a kind of frenzied desperation to come up with something that explains this niggling little jagged hamster-wheel of an illness.


It's not unlike what supplement manufacturers attempt when they're putting together something like, say, a probiotic: dump 15 or so different strains into a capsule and hope that one or two of them will have sufficient beneficial effect on enough of the people who buy it to keep them coming back for more, and thereby, keep the manufacturer in business,

Which doesn't mean that I don't agree with you. There are truly mysterious and counter-intuitive aspects to this illness, but to name as its cause pretty much everything that causes anything, from the spinal cord to the colon and back again, isn't going to serve anyone's interests.

@joshua.leisk has at least isolated a treatment protocol that seems to have worked effectively for himself and several others, and is sharing it with anyone who wants to give it a try, with no financial advantage to himself.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...

joshua.leisk

Joshua Leisk (Researcher)
Messages
232
Location
Sydney, Australia
If one listened to last week's OMF presentations, as well as the many other findings of the researchers, doctors and patients over the past few years, it is clear that ME/CFS is not one disease but rather a set of symptoms that can be due to spinal issues, other infections besides herpes family (cocksackie, enterovirus, chlamydia pneumoniae, SARS family, Lyme, Bartonella, etc.), mycotoxins, heavy metals, gut dysbiosis, autoimmune antibodies, nutrient deficiencies/imbalances, endocrine dysfunction, etc. generally found in different combinations with different comorbidities in different patients.

It is highly unlikely there's a single cure for all of the above, though it certainly would be convenient if there were.
Very much agree.

I’m on a bit of a mission and currently looking into some of the other infections / causes... there are so many ways to reach this state. This may be my focus for quite some time.

So far (very early indications) -

Genetic mutations (now patchable, in many cases)
Coxsackie, enterovirus, etc (these are very much a WIP right now)
SARS (seems to be reactivating HHV, same HERV).
The endocrine dysfunctions are also looking frequently like downstream of undiagnosed pathogens (HHV, HIV, coxsackie, enterovirus, etc., bacterial infection - C.diff) and ageing / genetics / trauma (that’s the next paper).
HIV looks positive from early testing (that’s another paper coming out shortly).
Gut dysbiosis.. (that’s different paper and a huge societal mess.)
Autoimmune antibodies (appear to be mostly HHV).
Heavy metal poisoning (big WIP - I really need to look more into this angle. I’ve been made aware of some interesting treatments in recent weeks.)
Intracellular bacteria (WIP - found some interesting options)


“More research is needed.” 🤔🤷🏻‍♂️
 
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Reading_Steiner

Senior Member
Messages
245
@Reading_Steiner ...

I can't tell you how grateful I am, both for your willingness to engage in @joshua.leisk 's program, but also to post so lucidly and concisely here about exactly what you're taking, and how it's affecting you. You are my new hero. Which is not to disparage my other 2 or 3, but believe me, it's not something I say lightly :thumbsup::thumbsup: :woot::woot::woot: :angel: :angel::angel::angel: :trophy::trophy::trophy::trophy::trophy:.


I don't think that @joshua.leisk proposed it as anything other than something hopefully helpful, that he and his partner have put an absolutely staggering shite-load of effort, work, thought, and research into.

To dismiss it as 'purported', as tho is had been proposed, as so many other protocols have been, as the absolute ne plus ultra of treatments, is unfair and quibbling.

Unless I read @Reading_Steiner 's post incorrectly, they've been on the protocol for 3 days now. It's the introductory first step, and is only 4 days long, so they've been on it for 3/4's of the length of time required for its completion.

I could be wrong. Wouldn't be the first time ....

Yes. Yes, I totally can.

You're absolutely right, as well as courageous and generous in your sharing of your experience, and the exact products you're using.

I'm holding the biggest bundle of good thoughts and positivity for you, and onward and upward :rocket::rocket::rocket:!!!!

Thanks ! I always enjoy your posts. I called it purported because I didn't want to give people false hope, I do believe that the treatment is effective for the people that Joshua says he has tried it on, and I had a feeling it would be for me too, but theres such a thing as scientific method and its good to maintain a semblance of that if we want to be taken seriously by academic types who have access to funding and expensive laboratories.

I suspect there might be subtypes, because if you consider the case of Jen Brea and Jeff Wood, sorry if I got their name wrong - did the me/cfs cause their CCI ? or did their CCI cause their ME/CFS, if the former then why did they recover after correcting this physical issue ? If its the latter then it confirms there are multiple root causes. Learner just said a similar thing.

This isn't my first time doing this sort of thing. I studied here for 2 years https://en.wikipedia.org/wiki/Royal_Latin_School That was before the internet though and online ordering, I also had no money, so I never really experimented with something like Chemistry as much as I would be able to now. I didn't feel like going into Research Science, for some reason I thought that it was the only application for studying classical science at university, and I was playing a lot of online PC games, which was an emerging technology at the time, and hacking those games and writing programs in Java etc, so I ended up studying computer science instead, which I thought was fairly useless. Being similar to the Sheldon Cooper or Maurice Moss archetype I had trouble relating to people, particularly in an urban metropolitan liberal progressive setting where people were less academically inclined than the school I had came from. I ended up developing depression and OCD which killed off my programming career before it really got going, moved back to my home town and was what they call a NEET for about 5 years.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
I'm going to try to keep this brief so we dont take this thread off-topic, so forgive any terseness ....
I called it purported because I didn't want to give people false hope,
I didnt take it any other way. Maybe change to 'proposed'? 'Possible'?
I suspect there might be subtypes,
I completely agree. I think your subset is determined by your weakest link, whether genetic or spinal or neuro. But the fact remains that the primary attacker is till ME, the subset is a follow-on.
I studied here for 2 years
WOW !!! That's an incredible CV !!!! Thank you for the link, I'd never bumped into Royal Latin before ... I also wasnt aware that Edward VI had ruled long enough to do that much damage ....
particularly in an urban metropolitan liberal progressive setting where people were less academically inclined than the school I had came from.
You're too kind. The truth is that, as the last four years or so has shown, there are an awful lot of idjits in the world, and they'd all hate anyone with the kind of education and credentials you carry. You life-long struggle, other than mE, will be finding your tribe :woot::woot: :thumbsup: :hug:...
 

Reading_Steiner

Senior Member
Messages
245
I'm going to try to keep this brief so we dont take this thread off-topic, so forgive any terseness ....

I didnt take it any other way. Maybe change to 'proposed'? 'Possible'?

I completely agree. I think your subset is determined by your weakest link, whether genetic or spinal or neuro. But the fact remains that the primary attacker is till ME, the subset is a follow-on.

WOW !!! That's an incredible CV !!!! Thank you for the link, I'd never bumped into Royal Latin before ... I also wasnt aware that Edward VI had ruled long enough to do that much damage ....

You're too kind. The truth is that, as the last four years or so has shown, there are an awful lot of idjits in the world, and they'd all hate anyone with the kind of education and credentials you carry. You life-long struggle, other than mE, will be finding your tribe :woot::woot: :thumbsup: :hug:...
Thats one way to look at it. I've expanded my understanding of different peoples perspectives and motivations since then, I have a sort of each to their own attitude for the most part, rather than condemning sections of the population I accept that there are inherent differences that sometimes we can't change and theres not necessarily a right way to be, its easy to make the mistake of thinking that the way we are as an individual is the right way everyone should be.

I studied at what we call a comprehensive school before that ( I think it means just get people to the level where they can just about comprehend the essentials ? ), I had to sort of work my way up to get recognized as being worthy of going to a school that was more demanding, but I feel as though I missed out on a lot of core education as a result, I wasn't quite as good at maths as others, and knew or retained very little information about history didn't really start to appreciate that until I was much older.

Anyway experiences today with the treatment.... I left the house for a couple of hours not having any access to water, this was an 'interesting' experience, I started looking at puddles on the ground and they looked very tempting. I probably drank 1 litre plus already before that, in a few hours ( got up late ). No change in symptoms particularly, energy levels are still above what they would be on a normal 'good day' of late, but when the drugs start to build up later in the day, the fever starts to kick in and I feel a bit whacked, not wanting to move or commit to any activity.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
its easy to make the mistake of thinking that the way we are as an individual is the right way everyone should be.
I guess I was saved from that by the lucky break of spending much of my childhood and into my very early adolescence in another country .... it really changes your perspective. I'm grateful for that almost every day ....
didn't really start to appreciate that until I was much older.
I hear 'ya. I dont know why everything's a double-edged sword, but those seem to be the rules ......

It's good to hear your progress continues to be promising and not unpleasant, at least so far ... thank you again for posting all this :):) :thumbsup: :hug::hug: ....
 

Reading_Steiner

Senior Member
Messages
245
treatment chart.jpg

If anyone ends up trying this in the future and they can't be bothered to keep remembering what to do or figuring it out again every day, I just made this so I don't have to keep drawing it by hand. Some people choose to only take certain ones from the list Joshua published, I don't take sublingual what not or melatonin for example.
 

joshua.leisk

Joshua Leisk (Researcher)
Messages
232
Location
Sydney, Australia
[copy/pasta from @godlovesatrier blog day 1, for visibility]

I’m paradoxically happy to hear you’re getting sick.. (what an unusual thing to normally say..) 😂

My general advice for anyone following along is that from our experiences, reishi and beta-glucans should normally invoke a strong immune response within the first week.

If someone is confirmed HHV-positive and not weakly cursing my name from their sickbed by day 7, they may have an unsuitable reishi product (which doesn’t have the required high triterpene content). LEF reishi complex has quantified triterpenes.

Maintaining optimal serum D levels is also important for macrophage functions that may be stimulated by beta-glucans.
 
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godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
LEF means Life extension in this context. Josh sent me a Life extension reishi extract which works out as about £40 a month UK money. This has the triterpene content. I think I'll have to get this as I am not convinced the indigo herbs tincture is doing the trick. Promoting an immune response yes but possibly not a strong enough one and I do think potency is important because Dr Lerner was using Valcyte. So surely the beta glucan immune response needs to be comparable.
 

BrightCandle

Senior Member
Messages
1,152
I don't take sublingual what not or melatonin for example.

I had trouble finding the sublingual but I found some yesterday so that will get added at some point. Melatonin is an odd one for me, I was taking it sometimes for the past 1.5 months before starting the protocol and I found it did help me get to sleep really well but I would often feel groggy for most of the next day. That passed after a while however and I have considered just a net gain drug since.

I certainly don't feel good at the moment on day 3, getting a blocked nose, hot and cold and more fatigued, certainly feels like I am coming down with a bug. Hoping for the onslaught of glandular fever again soon! This is the weirdest thing to want to happen, it feels odd telling the wife I plan to "have a cold" on Thursday for 2+ weeks.