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

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I will post my experience here with this treatment plan, I previously have described how I reacted to Succinic Acid, which is one test that someone can do that indicates suitability for effectiveness of antiviral techniques that target HHV-6 and similar latent infection. You can find information about the science of this in the Latest Research section.

My background -
2015 - acute viral onset resembling Labyrinthitis, following exercise overtraining. Blood tests showed no definitive cause, conclusion at the time was probably EBV. Remained able to exercise at 1/3 capacity, with no endorphin response, this got lower in following weeks.
2016 - was still able to walk long distances, but started having to take breaks, felt stomach ache near the diaphram immediately after these walks, distance became less and less, was still doing heavy DIY though. Tried GET unofficially, it made me worse. Started to go into a downward spiral that nothing seemed to improve. In the space of 2 to 3 months I went from mild to very severe.
Unable to use computer, read a book, listen to music, eat food etc. Couldn't look out of a window or be blinded for minutes by light sensitivity. This lasted around 1 month,
I learned to control what I was thinking about and I imagined myself to be a different person with a different personality to facilitate this, shutting down access to my memories / usual preoccupations which placed a burden on mental energy. After this happened I was no longer able to tolerate any exercise such as walking, and I never tried to leave the house under my own physical power. Spent long time slowly improving by rest / pacing, but suffered terribly from orthostatic intolerance ( with occasional POTS ). I used VR a lot to block out visual clutter and help me ignore other people in the house etc. I used the beta blocker drug Propranolol to slow my heart rate and it seemed to help with muscle aches. I spent most of the time with legs raised using a chair that could do a lot of different stuff.
2017 / 2018 / 2019-
Reached a sort of equilibrium where I was effectively moderate, I would get bad PEM if I overdid things and I would sometimes crash, once every few months, but it was generally a week long thing, not on and off quickly. Developed noticeable MCS, particularly to black mould.
Left the house fairly often relying on mobility scooter. Learned a lot of different skills during this time, which seems to correspond with Joshua's theories ( if you read the papers ).
2020 / 2021 - Factors outside of my control / life circumstances changed and I had much more emotional / mental stress, physical exertion and environmental triggers. After a few months of this I developed new symptoms, what I called Super Hayfever at the time, my entire throat would burn in a prickly way, I had terrible nausea, I took to wearing a mask all of the time, even when sleeping ( nothing to do with coronavirus ). The worst of this resolved itself after a while but my symptom profile was permanently altered, with occasional sore throats, much higher MCS, and stomach sensitivity issues that scaled up when I was near crashing, crashes became much more frequent although often short lived, coinciding with elevated pounding heart rates that would not abate at rest, but minimal orthostatic intolerance and no POTS.

I had never heard of Joshua before I read the paper he put here about a month ago. I had been looking for a treatment that was safe, inexpensive / easily accessible, with a high enough predicted effective rate to be worth trying, previously the only treatments I had tried were probiotics and BCAA, I have some relief from the latter, hard to say with the former.
I have been most impressed in recent months by theories and observations regarding blood flow problems and latent viral infections, I found those to hold the most likely promise.

I have been taking the treatment described in the paper for 24 hours now, and I observe physiological changes consistent with the theory described in the paper, which align perfectly with the taking of specific substances. If I don't take the sodium benzoate fast enough for example I will start getting a pressure headache, which disappears when I have taken the drug.
My ME/CFS symptoms are noticeably reduced, and I feel what I believe is immune activation, particularly feeling differences at my stomach, face ( red face ? ) and brain. The immune reaction is not as strong as I expected however, it is not very uncomfortable yet.

If you have also decided to try this experimental method, please also add your experiences !
 
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Second night, have quite a fever going now that started around 24 hours into the treatment plan. I should be ready for bed by now but its making it difficult to sleep, I measured my temperature and it reads 38 degrees C, which is higher than any previous reading i've done ( usually its normal ( 37.5 ) or below normal even when I feel ill ).
 

Learner1

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I think for now, "purported cure" just about describes it. Succinic acid can be highly manipulated by B vitamins, to like riboflavin, folate and B12.

My initial instinct is if something sounds too good to be true it probably is. In this case there are some mechanisms I haven't seen discussed very much in relation to ME/CFS, so perhaps there's some validity to this, however, It does seem odd that other nutrients and biochemical processes don't seem to factor into this theory at all, which doesn't make sense.

Good luck with your experiments. It might be helpful if you explain which part of the protocol that you are doing, and why are you were choosing to do that specific part of the protocol at any given point in time.
 
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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.

needed chemicals.jpg
 
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Yes the bright yellow is from the b vitamins, that's normal, comes with taking such high doses.

You've more or less bought the same stuff I did. I'm just not sure if I've got the right green tea extract, time will tell. I got this one:

1620651258716.png

1620651268743.png


Hoping to split the green tea pills/capsules to get to Josh's recommended dose.

Just a question Steiner - how did your first 4 days taking the sodium benzoate, panthothenic acid, glycine and cysteine go?

Hoping this works for you, fingers crossed.
 
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I haven't done all 4 days yet, this is day 3. I'm not getting as bad of a headache as it says to expect, and fever overall hasn't been that bad, little to no pain in the liver. It could be that I am not taking enough reishi. I know that the lions mane I have says 450mg but when you actually look at the bottle, it says thats for 3 pills, so actually they are only 150mg, bit of a false advertising really.
 

pamojja

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I know that the lions mane I have says 450mg but when you actually look at the bottle, it says thats for 3 pills, so actually they are only 150mg, bit of a false advertising really.
Pretty common practice with all supplement companies. Therefore reading the ingredients list of any supplement is a must. There usually it does indicate how many pills make a serving, and its content.

Your's however seems to be a very high quality product. At 1:12 concentration (ie. a 150mg pill is concentrated from 1.5g dried powder), standardized to 50% polisaccarides and 30% beta-glucans. Haven't yet seen any mushroom extract with such high concentration of beta-glucans - I usually don't buy anything from amazon. What is its company name (can't recognise on the small picture).
 
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Pretty common practice with all supplement companies. Therefore reading the ingredients list of any supplement is a must. There usually it does indicate how many pills make a serving, and its content.

Your's however seems to be a very high quality product. At 1:12 concentration (ie. a 150mg pill is concentrated from 1.5g dried powder), standardized to 50% polisaccarides and 30% beta-glucans. Haven't yet seen any mushroom extract with such high concentration of beta-glucans - I usually don't buy anything from amazon. What is its company name (can't recognise on the small picture).
oh really ? brainpower supplements it says at the top, green logo.
 
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https://www.amazon.co.uk/gp/product/B08BLJ3JZL/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
  • NO ARTIFICIAL FILLERS - Each serving of 3 daily capsules provides 2100mg of Reishi (from 15:1 Extract). We have only added brown rice flour to aid the manufacturing process. Each bottle contains 120 capsules providing 40 servings.
    [*]BOOSTS BODY DEFENCES. The active ingredients in the Reishi mushroom have been shown to have a powerful effect on the bodies defence system. This includes improving the symptoms of allergies, supporting bodies defence and relieving inflammation.
    [*]HERBAL ANTIOXIDANT. Known as the “herb of immortality”, Reishi has been used for over 5000 years for its overall health and anti-ageing effects on the body.
    [*]POWERFUL ADAPTOGEN. Our 15:1 concentrated mushroom extract helps to ease the effects of stress and anxiety, by modulating the release of stress hormones. Its tonic effect on the body combats fatigue, supports heart health and promotes overall wellness.
    [*]GOWER HEALTH & FITNESS GUARANTEE. Gower Health & Fitness Ltd. is a UK based family run business. We pride ourselves on providing the highest quality products. We offer a 100% MONEY BACK guarantee! If you are not satisfied for any reason we will refund you, no questions asked.
Ingredients:

Bulking Agents (Brown Rice Flour), Reishi (from 15:1 Extract) (providing 30% polysaccharides), Vegetarian Capsule (Hypromellose).
I've got this one upstairs, but I end up high as a kite even if I take one capsule and that normally means I'm crashed by the next day.
 

pamojja

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If one doesn't know what they talk about its deceptive. 1 capsusle only contains 233,33 mg of a 15:1 extract, made from originally 700 mg of Reishi. Since it is standardized for polisaccarides only, it isn't standardized for triterpenes. For the purpose at hand useless.

Do you have a link to the reishi you bought?
https://www.indigo-herbs.co.uk/shop/buy/reishi-tincture-100ml is what @Reading_Steiner bought.
 
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https://www.amazon.co.uk/gp/product/B08BLJ3JZL/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1


I've got this one upstairs, but I end up high as a kite even if I take one capsule and that normally means I'm crashed by the next day.
That one doesn't look likely to contain any of the tri - thingys, which are the important part here. It will only have them if its 'alcohol extracted'.

This afternoon ( 3rd day of treatment ) I am feeling really sleepy, unmotivated to do anything, but not feeling rough or ache, physical activity isn't causing neurological issues like it was before beginning treatment, but my muscles feel like they are straining to do stuff. I did manage to hoover my room earlier which is good.
I don't want to fall asleep though because I have to take the 3rd dose for today soon ( the PM one ). I am not experiencing the huge fever that I did yesterday, not yet anyway.
 

JES

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I have been taking the treatment described in the paper for 24 hours now, and I observe physiological changes consistent with the theory described in the paper, which align perfectly with the taking of specific substances. If I don't take the sodium benzoate fast enough for example I will start getting a pressure headache, which disappears when I have taken the drug.
My ME/CFS symptoms are noticeably reduced, and I feel what I believe is immune activation, particularly feeling differences at my stomach, face ( red face ? ) and brain. The immune reaction is not as strong as I expected however, it is not very uncomfortable yet.
Sorry to hear your struggles and hopefully you'll find a way to regain back some health. 24 hours is way too short to assess the impact of a treatment. There are lots of treatments that produce a temporary effect in ME/CFS, but then stop working. I have personally found temporary improvement from dozens of pharmaceutical and non-pharmaceutical treatments. Sometimes this improvement has been so profound I felt cured, but the benefits never lasted.

My assessment is that treatments, which produce quick (and often temporary) improvement are most likely far from targeting the actual cause of the disease. Rather, they alter the homeostasis, which sometimes can push things back towards a better state for a while, but eventually the system returns back to the ME/CFS state.

If the underlying issue is a chronic herpesviral infection and you want to get rid of that infection, the time frame for achieving that is months as per what Dr. Lerner and others have observed.
 
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That's true @JES but Joshua does say it takes 2 to 3 months to work.

Like you I've been able to get dramatic and small improvements to my ME taking certain things and these improvements never last. A few weeks or months after I stop them I go back to my baseline which has got worse over the years.

Therefore I do wonder what the maintenance protocol is to stay well once things work.

I've not long taken my third dose. No major changes yet. Just extra head pressure I think. But I'll note any dramatic changes on my PR blog.

And your right. Lerner had patients on valtrex or valcyte or both sometimes for years and many relapsed once in remission if they discontinued the drugs. Dr chias patients often take equilibrant for life to maintain the effects of remission from enteroviral infection. Seemingly a smaller subset can discontinue without effect. Makes you wonder if nutritional protocols work on this subset more easily than those who remain on the drug's.
Plus finding a maintenance regime is incredibly difficult even if you do manage vast improvements. It's very frustrating.
 
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That may be so but we won't know until a good amount of people have tried. I'm hoping we can at least eliminate some of the mystery surrounding the disease. To play devils advocate for a sec, how many of those theories had a solid scientific theory underpinning their mechanism, and a broad factoring in of associated systems that are indirectly affected or relevant ? You say Dr Chia was able to do this, yet OMF says still no evidence of 'a pathogen' with their big investment and technology. Can you see why I choose to put faith in the unknown ? for little seems known, all is based on shifting sand.
 
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Immune response that was low all day has come back now as soon as I went to bed and got warm. seems to be affecting the brain more today than yesterday. I started seeing flicker when I closed my eyes which is typically something I associate with light sensitivity, but this is not that. I got a clearer imagination than usual, what some people call 'lucid dreaming' where you are neither fully awake nor asleep, also random images flashing up at high frequency that were fragmented, obviously something neurological happening, several hours sleeped then waking up within the fever and just general sense of moderate confusion and not wanting to think, wanted to go back to sleep but I had to get up to drink water and take more sodium benzoate. Still don't feel like doing much, which makes 2 nights in a row - uncharacteristic.
 
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Second star to the right ...
@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 think for now, "purported cure" just about describes it.
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.
24 hours is way too short to assess the impact of a treatment.
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 ....
Can you see why I choose to put faith in the unknown ? for little seems known, all is based on shifting sand.
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:!!!!