ME/CFS Research: Herpes Autoimmune Spectrum Disorder

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joshua.leisk

Joshua Leisk (Researcher)
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I don't know if you want to hear from me or not. I'm a 74 yr. old female who has had ME for 35++ years (forget), have Syringomyelia (SM) and Arnold-Chiari Malformation. I've had surgery for both many years ago and this is some of my input.

Prior to the SM & ACM being discovered, I was also diagnosed and treated for a pituitary tumor. I was on bromocriptine for years and I really had no overt symptoms. I am always being tested for thyroid problems, but nothing ever seems to show up. That's fine...I'm not looking for other trouble.

I never had an eating disorder until I had Shingles which left me with anorexia. It took a long time to return to semi-good health b/c I had 3 attacks one after the other. This made 4 attacks in total, the first was when I was 30.

Since your research included people with eating disorders, isn't it possible their hair fell out b/c of it?

I've never had problems taking acetyl-choline.

No, I don't like milk of any kind (well, almond milk, but that's it). Eggs, no but I will eat a fried egg sandwich.

My protein level is probably lower than it should be, but I do have one really nutritious meal/day. I still don't eat much, but have gained weight due to meds b/c of multiple hospitalizations over the past 18 mos. or so.

I have severe allergies and immune problems that never end. I've had a mild heart attack & have 6 stents and high BP and cholesterol (don't know how!) My father died at age 40 of a myocardial infarct.

I take medication for anxiety/panic disorders and have depression if I'm not on medication.

May I ask what led you to the conclusion (?) that the liver is involved? I did read your research, but I'm getting a bit too old to be reading involved research. (And my mind won't let me remember everything.)

I'm from a large family. When I was a child one of my sisters had hepatitis. I can't give you more info because it was during childhood, my mother and just about all of my brothers and sisters have passed away. I did ask that sister if she knew what type of hepatitis it was, but she didn't. She was younger than I was at the time.
She also had an illness known as Stiff People Syndrome...nasty business.

I have autoimmune encephalitis which has impaired my thinking. Used to have a great memory, but even though I've tried very hard, I can't get it back to what it was before the encephalitis. This is a new Illness.

I was also diagnosed with epilepsy...and indeed I have had blackouts. I broke my wrist during one but didn't realize the cause until I spent time and effort trying to figure out everything that had occurred. I'll be on medication for the remainder of my life. Epilepsy is also a fairly new Illness.

About 2 years ago, I heard about a form of celiac disease that does not present in the normal manner. The new form destroys the neurological system and seems to begin late in life. Thus far, there have been approx. 4 known cases of this illness. Even though patients are treated with chemo drugs, all have died. You may find research at Columbia. No pain is associated with this illness, but it looks like ALS.

I'm giving you this information b/c not too many people of my age are involved and we're a hard group to reach. I thought you may find it of some interest...if not, that's fine.

Thanks for trying to help us. I'm glad that you recovered...enjoy it. Yours, Lenora.
Hi Lenora,

I would very much like to help you.

I've just linked my latest paper above. It's written for a general audience and has actionable information in it.

Cheers,

Joshua
 
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This is an amazingly thorough and what appears to be scholarly and studious read. I have tweeted the publication to my followers, hopefully someone more important will pick it up and tweet it on.

I don't know the science from experience, just recent reading and what I've read on HR and PR, but this is fascinating stuff.

The writer in me LOVES this line "Is the symbiotic evolution of the herpesviridae family and their metabolic alterations directly responsible for the increased intelligence of homo sapiens as a species, while simultaneously shortening our lifespan via creating cancers and senescent cells? (Interestingly, HHV appears to function as a ubiquitous / highly transmissible viral equivalent of the “Apple from the Tree of Knowledge” described in Biblical texts. If someone wanted to deploy a resilient “software patch”, this is a really logical way to facilitate that.)"

I first thought bacteria might have a symbiotic relationship with human evolution when I realised lyme bacteria seem to be in every human host (or potentially many) and when it came to dormant virus'. Surely there not really that dormant and actually have a function? The same as lyme. Until we get people with ME who end up getting sick.
 
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gbells

Improved ME from 2 to 6
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Hi Lenora,

I would very much like to help you.

I've just linked my latest paper above. It's written for a general audience and has actionable information in it.

Cheers,

Joshua
I had a shingles outbreak too. It's another ME virus but it must be well controlled by the antibodies to not spread much otherwise it wouldn't be limited to the bands. Fast treatment with acyclovir is very important to prevent severe pain. There is a good vaccine for it now too.
 

lenora

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Hello Joshua,

Yes, the antivirals were just at the beginning of their use when I had my last Shingles attacks. I've definitely had the new vaccine...couldn't get it fast enough. Each outbreak of Shingles is worse than the one before it. I've never really recovered my so-called "health" since those outbreaks. A bad memory indeed. Let me just say that I live in fear of a repeat of it.

Would you mind giving me the link for your latest paper again? How do you suppose that you were able to over ME. Also, do you suppose that mechanical (surgical) causes could be responsible for many cases in the first instance. Neck injuries are especially bad.

I don't expect changes at my age, but I would like to see them for those much younger than I am. That's why I thought the experiences of an older patient may be of some use to you and your partner. Thanks for even reading my rambling commentary. And stay healthy! Yours, Lenora.
 

gbells

Improved ME from 2 to 6
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Hello Joshua,

Yes, the antivirals were just at the beginning of their use when I had my last Shingles attacks. I've definitely had the new vaccine...couldn't get it fast enough. Each outbreak of Shingles is worse than the one before it. I've never really recovered my so-called "health" since those outbreaks. A bad memory indeed. Let me just say that I live in fear of a repeat of it.

Would you mind giving me the link for your latest paper again? How do you suppose that you were able to over ME. Also, do you suppose that mechanical (surgical) causes could be responsible for many cases in the first instance. Neck injuries are especially bad.

I don't expect changes at my age, but I would like to see them for those much younger than I am. That's why I thought the experiences of an older patient may be of some use to you and your partner. Thanks for even reading my rambling commentary. And stay healthy! Yours, Lenora.
Get the Shingrix vaccine to prevent more attacks.
 
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Joshua I have mentioned this in a message to you but the non-fast you've got is a bit confusing compared to the fast option. It doesn't list all of the non fast quantities, there's no explanation of how it would or wouldn't work compared to the fast option (you seem to hint that it should work but there's no explanation as to why - apart from the lengthy paper that is). Also the sodium benzonate appears to have a cancer risk - are you aware of this?

If the intended duration for non-fast is 3-4 days, most people on the forum take NAC long term, with our without glycine, so why would these be taken only for a short period? The fast I can understand as a full system reboot, much like turning a computer off and then powering it back on from scratch (my god I need to think of a mainframe for this metaphor to make more sense these days! ha!). But the non-fast option is a bit vague.

Would love to hear your thoughts on the above. Thanks.
 

joshua.leisk

Joshua Leisk (Researcher)
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Hello Joshua,

Yes, the antivirals were just at the beginning of their use when I had my last Shingles attacks. I've definitely had the new vaccine...couldn't get it fast enough. Each outbreak of Shingles is worse than the one before it. I've never really recovered my so-called "health" since those outbreaks. A bad memory indeed. Let me just say that I live in fear of a repeat of it.

Would you mind giving me the link for your latest paper again? How do you suppose that you were able to over ME. Also, do you suppose that mechanical (surgical) causes could be responsible for many cases in the first instance. Neck injuries are especially bad.

I don't expect changes at my age, but I would like to see them for those much younger than I am. That's why I thought the experiences of an older patient may be of some use to you and your partner. Thanks for even reading my rambling commentary. And stay healthy! Yours, Lenora.
Hi Lenora - here you go!
https://www.researchgate.net/publication/350956432_CFSME_A_New_Hope
 

joshua.leisk

Joshua Leisk (Researcher)
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Joshua I have mentioned this in a message to you but the non-fast you've got is a bit confusing compared to the fast option. It doesn't list all of the non fast quantities, there's no explanation of how it would or wouldn't work compared to the fast option (you seem to hint that it should work but there's no explanation as to why - apart from the lengthy paper that is). Also the sodium benzonate appears to have a cancer risk - are you aware of this?

If the intended duration for non-fast is 3-4 days, most people on the forum take NAC long term, with our without glycine, so why would these be taken only for a short period? The fast I can understand as a full system reboot, much like turning a computer off and then powering it back on from scratch (my god I need to think of a mainframe for this metaphor to make more sense these days! ha!). But the non-fast option is a bit vague.

Would love to hear your thoughts on the above. Thanks.
Hi! The second protocol I discussed in the paper boils down to -

Start with the ammonia management.
First 4 days should have:
1g of sodium benzoate, 4x a day
1g of glycine, 4x a day
High dose pantothenic acid
Additional cysteine


Include and continue with (beyond the 4 days):
20-35mg EGCG, every 4.5h
500mg of reishi 1:1 (or equivalent alcohol extract), 3x a day
250mg of lions mane, 3x a day
200-300mg of R-ALA, 3x a day
Add 5-10g of creatine


If someone has lytic HHV, those antibodies will take 6-8 weeks to clear out, as a combination of time for infected b-cells to die and IgG to metabolise.

They can add more oat bran as your tolerance for immune response allows.

Expect them to have symptoms of a nasty case of flu for a while - gut issues, fever, inflammation, swollen lymph nodes, etc.
 
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joshua.leisk

Joshua Leisk (Researcher)
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Thanks for the reply Joshua. So this looks good, but the reishi 500mg would cause insomnia (it does when I take it), creatine makes me crash. Any advise for these too? 1mg of melatonin won't touch a few days of reishi extract at 1:1 ratio 3x a day. Creatine would further up the insomniac effect I reckon.
I can’t offer specific medical advice owing to sensible forum rules designed to shield us all from splashback.
What I can say is that in general, people who are able to drop their current protocol/ confounding factors and follow the protocol described are seeing results. The first few days or so can be a bit unpleasant and then things improve. No one who has started on this path so far has regretted it.
 
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Another question here I think is, what is causing the low NK cell count? I read recently that ebv upregulates il10, which interferes with t cell cd4 and cd8 counts, so maybe that's why. But why is ebv not dormant in the first place?

I ask because I am reading Goldstein's work and trying his limbic/brain based treatments. I guess the root cause could still be these elusive anto antibodies, which longcovid researchers recently found. https://www.sciencedirect.com/science/article/pii/S2589909021000204 and Davis postulates exist.
 

joshua.leisk

Joshua Leisk (Researcher)
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Another question here I think is, what is causing the low NK cell count? I read recently that ebv upregulates il10, which interferes with t cell cd4 and cd8 counts, so maybe that's why. But why is ebv not dormant in the first place?

I ask because I am reading Goldstein's work and trying his limbic/brain based treatments. I guess the root cause could still be these elusive anto antibodies, which longcovid researchers recently found. https://www.sciencedirect.com/science/article/pii/S2589909021000204 and Davis postulates exist.
One thing - the research I cited showed that EBV and/or any other HHV are never dormant. They have multiple modes - the “lytic” phase (which is largely responsible for the autoimmune antibodies) and the “latent” phase (which is responsible for the metabolic alterations and CFS).

In latent phase, the infected cells replicate via transcytosis, locally. It’s like a sneaky “smouldering” infection.. which also ruins your day.

The lytic phase has systemic implications and is also rather unpleasant.

The people who have so far reached remission had previously shutdown their lytic phase with spironolactone or tenofovir. It took roughly 2 months to clear out the antibodies (IgG half-life is 21 days), according to real-time PCR tests, etc.

From what I can see, this will also happen with the treatment plan we’re testing and it’ll be a similar timeframe. Instead of targeting late-stage replication, we selectively kill the infected B-cells (and epithelial cells) and then just wait for the ab to get metabolised. At the same time, we shut down or impair the other replication functions of infected cells.

What we learned from earlier v1.x testing was that the lytic phase is unpleasant, however you can still enjoy your day.. it does take a while to clean up, however.
 
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Interesting. I wonder if I have already experienced this when taking my anti viral tonic in 2019. I used to take redroot, andrographis paniculata, knotweed, isatis, lomatium dissectum, milk thistle, dandelion 3x a day. If I added reishi or any adaptogens at all I ended up with insomnia. Suffice to say after 3 months on this protocol I began to feel pretty good and experienced a huge energy boost after only 12 days. Of course when these effects ended and I realised I hadn't found a cure for my ME, re-trying the protocol didn't help.

Of course your protocol includes a mito reboot, which mine never did. Thanks for explaining how the non-fast works and its effects on the infected cells.
 
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