ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[cogent_thought]

I want to thank @joshua.leisk for putting so much time and effort into this project with no specific career goals to attain. (Although the glory is nice! ). This thread has encouraged me to eventually retry some supplements I had put off.

Having a systems engineering background definitely allows one to dive more head on into tackling this issue than the typical medical approach as people experiencing these symptoms lumped into cfs/me are working through complex system failure. I'm probably biased as I also work in IT. This approach also reminds me of @Lassesen systems led approach which I don't see as mutually exclusive. Maybe a blog for this research would be more appropriate for @joshua.leisk as trawling through the thread a lot of information is going to get lost.

A systems engineering approach may not be quite as hippocratic minded as the typical medical mindset so I would urge people to be cautious before diving head on into the laundry list of supplements. Reminds me a lot of the methylation protocol and trying to overcome nutrient deficiencies by keeping dosages high. Ultimately this caused me a lot of additional complications in my health and life. I think go low and slow when starting so many new supplements at once if you have any commitments in your life and/or gains you don't want to lose, even if ultimately you want to cause an immune response. For me, reading through all this I do agree with the underlying thesis, however the approach of using so many supplements is going to lead to all kinds of interactions with people's secondary conditions. Why not take a more personalised approach if one is willing to do the research to understand effects?

• For example; NAC according to supp.ai has 615 possible interactions between Acetylcysteine and the following drugs and supplements. If you react strongly enough to that alone you're unlikely to be able to continue with the protocol. I'm bringing up NAC specifically because thanks to this thread I decided to retry it as I'm in a state of improved health now but at two 50mg dosages throughout the day. Seemed to have a beneficial effect, I was flying around fighting aliens in my dreams in a good way. I'll continue to titrate up the dosage and unblock things but I can't imagine it would be wise for me to do all of this at once
• If you are tracking your microbiome, you may be able to do better than the InnovixLabs Multi-Strain Probiotic 50 Billion probiotic although it does look to be a diverse one it may aggravate overgrowths if there is a lot of dysbiosis? Unsure on that one.
  
• Why are we using the same dosages across people with a range of severity and weight etc?
• Is the glycine/NAC + liposomal glutathione redundancy to ensure glutathione needs are sufficiently met.
• Why do we need a multivitamin that has so many of the individual ingredients added?

I've privately ordered an EBV IgG antibody test however I don't think many people have the resources to do the extensive testing to validate the HHV/herpes hypothesis in the papers. I've ordered most of the missing items from my medicine cabinet according to v3.3. I'm hoping that in a weeks time things will not have switched around on the schedule leaving me puzzled what to do next. I'm going to increase the items on the list and after enjoying my 2nd pfizer vaccine I'll give the fasting entry a shot.

For anyone curious, I've been taking the following the last week or to good affect;
selenium, sam-e, whey, butyrate, lactobacillus plantarum,symbioflor 2, magnesium glycinate, turkey tail.

Adding some NAC and vitamin C definitely made a difference. I might have been able feel a little activation of years long dormant herpes, maybe due to the betaglucans in turkey tail finally having some glutathione to work with. Hopefully following this protocol as a guide can help to shut/open the necessary pathways to make a dent on energy/sleep levels, digestive issues and support mental wellbeing.

Sorry for the brain dump, my doctors would never listen any of this. I'm very grateful for the thought you have all put into this.

 

[The Bard]

Is anyone keeping themselves fully abreast of this forum's nuances aware of whether one can reintegrate medications, i.e. Abilify, once surmounting the fast and embarking on the management protocol?

Moreover, is any specific predicate task required before entering into the fasting regimen? I want to ensure I resolve all outstanding matters prior to eschewing all foodstuffs this weekend. "The Bard" isn't quite ready to sing his last limerick just yet.

 

[godlovesatrier]

I think the theory is that after a few months of clearing out lytic cell infections you shouldn't need any medications for the ME anymore. Any diseases outside of that would of course have to be discussed with a doctor.

As for the fast (water) it may make you a lot worse as it's the more aggressive option and if you don't match the papers intended biological dysfunctions etc then that could be bad news. Also we have several auto immune Encephalitis patients @Hoosierfans and @lenora who were originally diagnosed with ME. Hoosierfans tried the protocol for 3 months and was unable to get any benefit in be end but she was very persistent in trying

So this is all to be bared in mind. I think severe patients always have to be extra careful as you just have little idea how your body will react to things. Sorry if that's not helpful but better to be honest. Wish I could give you better options I really do.

 

[Wisdom]

Im a CFS/FM er, Very Grateful for this New Hope thread. If CFS is mainly a liver problem, could milk thistle help as a daily supplement?

 

[Marylib]

@cogent_thought
This is basically my thinking at the moment, since following this thread. And thanks @godlovesatrier for summing up the theory. I have not been fully well since 1992, so I don't list all the protocols I have tried, tests, etc. I do appreciate noting them on this site when others list them. I should probably list my very all-time fave which I can't afford to do, and that's IV nutrition from a naturopathic physician, including the glutathione push at the end of the bag. It wakes me up to 'bright and busy-tailed' and puts me to sleep like a normal person. So in my case, it's quite clear that something is wrong oral nutrition. I'm gonna start a microdose of some NAC yet again and see what happens. Maybe I'll edge once again into a Sarah Myhill diet, and eat as many veggies as I want. @joshua.leisk may really be onto something here and it gives me hope.
(For those in the US, please be aware that the FDA is trying to ban the sale of NAC and a pharma company has a patent going. The research group doing a clinical trial needs to import it from Europe, says the guy running the trial)

 

[Marylib]

@The Bard - I'm assuming you are referring to low-dose abilify and do you have a psychiatrist/psycho-pharmacologist managing your trial of this? Are you aware that some included in that self-report retrospective article have developed metabolic disorders (and other nasty effects) that have not yet reversed upon discontinuation? It's good to keep your mind and your eyes open at the same time, in my opinion. You're just starting out on this journey, so just mentioning in case you are not aware. I don't mean to infantalize you, so forgive me if my words make it seem as though I am.

 

[The Bard]

@The Bard - I'm assuming you are referring to low-dose abilify and do you have a psychiatrist/psycho-pharmacologist managing your trial of this? Are you aware that some included in that self-report retrospective article have developed metabolic disorders (and other nasty effects) that have not yet reversed upon discontinuation? It's good to keep your mind and your eyes open at the same time, in my opinion. You're just starting out on this journey, so just mentioning in case you are not aware. I don't mean to infantalize you, so forgive me if my words make it seem as though I am.

Calculated risks appear unavoidable in the constant struggle to circumvent this disease. Of course there exists the potentiality for harrowing setbacks. What if my etiology doesn’t perfectly mirror that which the regimen is tailored toward? What if discontinuation of the modest Abilify dose thrusts me into a maelstrom reminiscent of the carnage witnessed at the Somme? What if I’m beset by a series of differential diagnoses, the likes of which are nearly incomprehensible to even the most seasoned clinicians? All real possibilities, but I’ve come to the conclusion that this disease isn’t a spectator sport.

Francis Collins isn’t coming to our deliverance. Nor koroshetz. Nor Fauci. Nor Wollensky, whose draft treatment guidance resurrects the dormant and discredited musings of Mike Sharpe. Perhaps not even Ron Davis, despite his venerable status and undeniable earnestness. I personally would rather die at the altar of reasoned experimentation than the bed of dissipation and indignity. I would never expect anyone to agree with this approach without prevarication, nor do I chastise those who operate with more circumspection. Defiance is my form of resistance, and the second that spirit wanes is the second ME defeats me.

 

[Marylib]

@The Bard - thanks. I fully support your approach, since it resonates with your own experience and your desire to be well. Calculated risks are all we have. My next pharmaceutical experience is titrating up on a dose of spironolactone. I had to agree to a very measured approach in order to maintain a good relationship with my GP. I have learned to be a 'compliant patient' because that's the only way I can try anything out. My own personality tends to be very adventurous so I am in a constant conversation with myself on how to best get what I want, while at the same time being mindful of how I can get it and maintain quality of life.

 

[joshua.leisk]

@joshua.leisk Do you have any (non healthy) women who are following your protocol? Seems it's mostly men on this thread unless I'm reading it wrong..whatever this disease is, it seems much more common in women. Thanks..

Yes, there are 6 that I'm aware of and 2 more starting this week. Additional monthly hormonal fluctuations will add some extra variability, however it's manageable. I'll be writing a bit more about this soon.

 

[joshua.leisk]

I want to thank @joshua.leisk for putting so much time and effort into this project with no specific career goals to attain. (Although the glory is nice! ). This thread has encouraged me to eventually retry some supplements I had put off.

Having a systems engineering background definitely allows one to dive more head on into tackling this issue than the typical medical approach as people experiencing these symptoms lumped into cfs/me are working through complex system failure. I'm probably biased as I also work in IT. This approach also reminds me of @Lassesen systems led approach which I don't see as mutually exclusive. Maybe a blog for this research would be more appropriate for @joshua.leisk as trawling through the thread a lot of information is going to get lost.

A systems engineering approach may not be quite as hippocratic minded as the typical medical mindset so I would urge people to be cautious before diving head on into the laundry list of supplements. Reminds me a lot of the methylation protocol and trying to overcome nutrient deficiencies by keeping dosages high. Ultimately this caused me a lot of additional complications in my health and life. I think go low and slow when starting so many new supplements at once if you have any commitments in your life and/or gains you don't want to lose, even if ultimately you want to cause an immune response. For me, reading through all this I do agree with the underlying thesis, however the approach of using so many supplements is going to lead to all kinds of interactions with people's secondary conditions. Why not take a more personalised approach if one is willing to do the research to understand effects?

• For example; NAC according to supp.ai has 615 possible interactions between Acetylcysteine and the following drugs and supplements. If you react strongly enough to that alone you're unlikely to be able to continue with the protocol. I'm bringing up NAC specifically because thanks to this thread I decided to retry it as I'm in a state of improved health now but at two 50mg dosages throughout the day. Seemed to have a beneficial effect, I was flying around fighting aliens in my dreams in a good way. I'll continue to titrate up the dosage and unblock things but I can't imagine it would be wise for me to do all of this at once
• If you are tracking your microbiome, you may be able to do better than the InnovixLabs Multi-Strain Probiotic 50 Billion probiotic although it does look to be a diverse one it may aggravate overgrowths if there is a lot of dysbiosis? Unsure on that one.
• Why are we using the same dosages across people with a range of severity and weight etc?
• Is the glycine/NAC + liposomal glutathione redundancy to ensure glutathione needs are sufficiently met.
• Why do we need a multivitamin that has so many of the individual ingredients added?

I've privately ordered an EBV IgG antibody test however I don't think many people have the resources to do the extensive testing to validate the HHV/herpes hypothesis in the papers. I've ordered most of the missing items from my medicine cabinet according to v3.3. I'm hoping that in a weeks time things will not have switched around on the schedule leaving me puzzled what to do next. I'm going to increase the items on the list and after enjoying my 2nd pfizer vaccine I'll give the fasting entry a shot.

For anyone curious, I've been taking the following the last week or to good affect;
selenium, sam-e, whey, butyrate, lactobacillus plantarum,symbioflor 2, magnesium glycinate, turkey tail.

Adding some NAC and vitamin C definitely made a difference. I might have been able feel a little activation of years long dormant herpes, maybe due to the betaglucans in turkey tail finally having some glutathione to work with. Hopefully following this protocol as a guide can help to shut/open the necessary pathways to make a dent on energy/sleep levels, digestive issues and support mental wellbeing.

Sorry for the brain dump, my doctors would never listen any of this. I'm very grateful for the thought you have all put into this.

The interesting thing about people's response to different supplements / inputs.. Once you take the existing model and look at the inputs from dietary supplements / food that "unblock" a particular metabolic pathway, you can predict the symptoms they will next experience (genetics / microbiome will also influence this).

eg. NAC is just acetate, pathothenic acid, cysteine and more cysteine.. these are all consumed in a normal diet... albeit some highly restricted diets, once pain avoidance kicks in, will lack sufficient amounts to replace what's being lost in urine.

Genetics not withstanding, everyone has the same potential for the complete set of symptoms - it's a matter of which metabolite runs out first as to which symptoms you get.

If/when I have more time, I'd like to build an interactive virtual model of the cell that allows you to dynamically add inputs and watch the metabolic cascades / reflexes. (A little like the "Glooper" described by my favourite author, Terry Pratchett.)

The doses in the schedule have been designed to allow for a wide distribution of body mass. For things which are a problem when depleted, the protocol errs to the side of abundance.

The biggest variables are the influences for a-KGDH:GDH. For GDH, I list EGCG as a protocol variable with adjustments (I'll be publishing a list of a number of other influences). In the trial, we'll be measuring serum GDH. The tests are $5/pop retail as kit of 100 tests, so it amazes me that Labcorp, etc don't offer it.

Other parts of the protocol are to rehabilitate pathways which have been blocked or depleted by intolerance / symptom avoidance / sanity. For example, in the model, avoiding [magnesium, zinc, B6] / P5P halts a large amount of the ongoing cascade, however still leaves you with collagen synthesis issues, neurological issues, etc. So you'll have some symptom relief and this likely causes a new fear of various foods to develop.

In the papers, I've only named the key or "top layer" metabolites from the cascade.. I could probably write another 100-200 pages around all of the downstream pathways that are affected... on that note, I may be adding something in the next update to help more with the depression / de-realisation problems people often have, while waiting for a completed immune response.

The microbiome rebuild in the protocol comes from multiple angles -
Seeding fresh colonies from (time release) pro/prebiotics.
Raw plant material.
Repairing the gall-bladder and bile secretion, fixing SIBO.
The fermentation substrates (potato, soy, dairy, rice).

An increased immune response can be expected from the butyrates and turkey tail / beta-glucans (one of the reasons I have butter in the reference diet). This will be mopping up lytic cells and possibly some latent ones, too. Enjoy

I very much agree with your view on engineering vs medicine. Having a systems engineer background myself, I think it's a key difference in the approach which has mediated the outcomes here.

There's so much fear in medicine of doing something "wrong", or doing something unconventional and having your medical license taken away. I've spoken privately to 2 doctors / professors this last week who were struck off the register for various reasons. One of them was using fungi to treat cancers.. with successes noted.

Maybe we need Biological Engineers?

 

[joshua.leisk]

I think the theory is that after a few months of clearing out lytic cell infections you shouldn't need any medications for the ME anymore. Any diseases outside of that would of course have to be discussed with a doctor.

As for the fast (water) it may make you a lot worse as it's the more aggressive option and if you don't match the papers intended biological dysfunctions etc then that could be bad news. Also we have several auto immune Encephalitis patients @Hoosierfans and @lenora who were originally diagnosed with ME. Hoosierfans tried the protocol for 3 months and was unable to get any benefit in be end but she was very persistent in trying

So this is all to be bared in mind. I think severe patients always have to be extra careful as you just have little idea how your body will react to things. Sorry if that's not helpful but better to be honest. Wish I could give you better options I really do.

The fasting method has some evidence for being very useful in autoimmune diseases - https://www.researchgate.net/public...sociated_with_remission_of_autoimmune_disease

- however it can be highly unpleasant. Comments I've heard include "worst nausea and pain I've ever had".. followed shortly by "wow, I feel amazing! So much energy!"

The interesting thing is that people who start with the fast also report a delay of typically 7-10 days before the intense immune response kicks in. Presumably the fast, which rebuilds the immune system, takes some time to build back to full strength.

I also have very different views on auto-immunity, as we all know.

Working together, we actually resolved 50% of @Hoosierfans symptoms.. the complications however appear to be co-infection / contra-indicated medication which can't be easily discontinued. There's a "see-saw" arrangement between the two problems (dizziness, ammonia) where resolving the burning makes the dizziness worse.

We're still talking daily about strategies she can discuss with her doctor. It may be that correcting the dizziness first, while converting/dumping the ammonia - without fixing GDH - could be a better short-term strategy.

I'm really looking forward to the day she's free of this mess and gets her life back. Hopefully this can be something achieved sooner, rather than later.

..

On a related topic, we may have had some success with two common intracellular parasites this week. I'll keep everyone updated.

 

[godlovesatrier]

We also had Harold Shipman in the UK though. Sometimes they get struck off for the right reasons.

I think you always get best intentions until nefarious people use it for the wrong reasons. That's usually when the regulation comes in to prevent mal practice.

Not saying your wrong. Just that some might not see the great risk to the patient.

It's a fine line between innovation outside of convention and mad scientist comes along and inadvertently or advertently harms hundreds of people. We also have to remember that the most vulnerable in society ARE the most likely to be harmed. Just a sad fact of life we get scammed and conned all the time.

Then you also have the American corporations which seem hell bent on making American lives a misery. Erin Brokovich and Dark Waters come to mind on that front.

 

[joshua.leisk]

Im a CFS/FM er, Very Grateful for this New Hope thread. If CFS is mainly a liver problem, could milk thistle help as a daily supplement?

Welcome!
Yes. Silymarin / milkthistle has relevance here and will be included in the upcoming list of GDH reducing compounds I'll be publishing soon.

 

[lenora]

It's been a coin toss for many, many years. Again, we're thankful to all those who try, but there are [those](which we didn't have to contend with many years ago), who simply want to make money on the backs of suffering people. Just be aware. Yours, Leonra.

 

[terry_anova]

There's so much fear in medicine of doing something "wrong", or doing something unconventional and having your medical license taken away. I've spoken privately to 2 doctors / professors this last week who were struck off the register for various reasons. One of them was using fungi to treat cancers.. with successes noted.

Maybe we need Biological Engineers?

.
Maybe the whole foundation on how to do medicine should be uprooted, AI already can do conventional medicine diagnosis better.
.
A combination of Genetics, OAT, Mineral analysis, some other specific tests, would usher a utopian model, but I think we are still very very far.
.
There's also a huge political obstructions, and interest groups. After all follow the incentives and you'll find the results. There's some wisdom in following the money trail I guess.
.
I'm just burning to go to the psychiartist office and have him issue me a diagnosis of not longer having ADHD oh and to all the people who said it can't be done .!.

 

[joshua.leisk]

.
Maybe the whole foundation on how to do medicine should be uprooted, AI already can do conventional medicine diagnosis better.
.
A combination of Genetics, OAT, Mineral analysis, some other specific tests, would usher a utopian model, but I think we are still very very far.
.
There's also a huge political obstructions, and interest groups. After all follow the incentives and you'll find the results. There's some wisdom in following the money trail I guess.

I was thinking a Metabolon test and AI..

 

[godlovesatrier]

Meanwhile my employer is running the NHS digital project (UK based), which is unknowingly pulling UK citizens personal medical records in non anonymised format and putting them onto the product. Nobody's asking any questions about security or how it will be looked after.

I know the BA on the project. Guardian had a great article this morning, I would urge UK people to read it: https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england

I like the AI diagnosis idea though. We've done ground breaking genetics work in the UK - but why is nobody seeing the benefit? I haven't heard of anyone getting a diagnosis from this apart from the original genetics england work.

 

[joshua.leisk]

Meanwhile my employer is running the NHS digital project (UK based), which is unknowingly pulling UK citizens personal medical records in non anonymised format and putting them onto the product. Nobody's asking any questions about security or how it will be looked after.

I know the BA on the project. Guardian had a great article this morning, I would urge UK people to read it: https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england

I like the AI diagnosis idea though. We've done ground breaking genetics work in the UK - but why is nobody seeing the benefit? I haven't heard of anyone getting a diagnosis from this apart from the original genetics england work.

The AI implications are amazing.

eg. I requested to throw a few selectors through @mariovitali ‘s software and it spat out a breadcrumb trail, in minutes, which would have taken me weeks to assemble.. and this is early days.

 

[YippeeKi YOW !!]

I’m so glad to see you participating in this thread, @The Bard ….. I posted a link to it for you in my welcoming post on your Introduce Yourself page about a week ago, but with no indication that you’d read it, I wasn’t sure if I should try to post it for you again, or if that would seem too pushy.

Thank you for relieving me of the burden of that decision ….

 

[Hoosierfans]

Working together, we actually resolved 50% of @Hoosierfans symptoms.. the complications however appear to be co-infection / contra-indicated medication which can't be easily discontinued. There's a "see-saw" arrangement between the two problems (dizziness, ammonia) where resolving the burning makes the dizziness worse.

We're still talking daily about strategies she can discuss with her doctor. It may be that correcting the dizziness first, while converting/dumping the ammonia - without fixing GDH - could be a better short-term strategy.

Woah woah woah there @joshua.leisk, you know we’ve worked well together and spent a crap ton of time trying to figure this out....but please don’t overstate what has happened. We haven’t “resolved 50 percent” of my symptoms. We got the burning to go away for a period of time, and it has come back (because I chose to go off the sodium benzoate, EGCG etc because of the fainting episodes I had)...but even at its best I wouldn’t say we resolved 50 percent of my symptoms — I have a laundry list...not just dizziness and burning. I have severe cogntibe issues, fatigue, akathesia, anxiety, depression, issues w my menstrual cycle, headaches and head pressure, insomnia, food intolerances.

You are working incredibly hard for me and you know I eternally grateful for it...but I also don’t want people to get the wrong impression.