ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[godlovesatrier]

I was just trying to get an idea of how many had joined who were contacts who hadn't signed any forms. Like myself.

And if you had included those people too or not?

Wasn't sure from your answer. Hopefully you'll get lots of numbers and we can a see the outcomes of your work.

 

[joshua.leisk]

Ahh no one has signed forms - thats just a draft doc for the clinical trial. It’s shocking that people are using it to heal themselves, but what can you do.

 

[godlovesatrier]

Thought so, just wanted to check

If it works it doesn't matter

 

[godlovesatrier]

Quick poll to see who's following the protocol and what diagnosis they have: https://forums.phoenixrising.me/threads/poll-people-active-on-herpes-veridai-protocol.83976/

 

[BrightCandle]

Day 6.
On Sodium Benzoiate about 50% to control headaches at the moment.
Food wise still keto but haven't introduced the tofu/potato/rice/dairy mix as of yet nor the microbiome bits.

Liver still tender, some muscle pain in legs, upper back and my private region! GI unhappy taking Fybogel to control as constipation being made worse.

Overall I have more energy, POTS response test is now "normal", headache is much less problematic and I have had many afternoons without a headache for the first time in 7 years. Heart rate down 15 bpm on average. In terms of hummingbird scale I would say 25% up from 10-15%. I can walk about and do things mentally and physically challenging. Still haven't hit a PEM limit, I am not trying at this point just gradually and carefully doing more awaiting for mono hit.

So far it has proved worthwhile anyway, several days without a headache was worth the 300 notes this cost me regardless!

 

[godlovesatrier]

Liver still tender, some muscle pain in legs, upper back and my private region! GI unhappy taking Fybogel to control as constipation being made worse.

This sounds really horrid, sorry you're dealing with that. Ascorbic acid always helps me with tummy trouble, as does liquid magnesium if you can get it. Obviously in moderation.

Yes my knees really are starting to hurt! As are the ligaments again. AN hour after my second dose. So what does the liver tenderness feel like? All I have is kidney aches, very interested in this liver tenderness.

That's amazing RE the exercise etc. I actually crashed pretty badly on Friday night and was almost back to my prior baseline Monday morning.

By the way the probiotic would potentially help with the constipation more than the mag/ascorbic acid route, at least I had some very unpleasant GI flares when I first started probiotics, took about 3-4 weeks to resolve fully. Private region could be bacterial too - quite possible. I got my gf this recently, it helps a lot (the reviews on amazon were pretty much 5* across the board): https://www.medino.com/product/opti...oqZkXhj7w6v-iwR32d9lcdIt7vW4fdABoCBJ8QAvD_BwE

 

[BrightCandle]

Liver tenderness feels like I am bloated under my rib area sort of like GI bloat but higher and when you push in it causes some discomfort. Honestly this is better than what I had before, my headaches were 6-8 all day everyday so headaches 0-3 with a bit of muscle soreness and liver tenderness is a lot less problematic! The muscles and ah nether regions are improving but also some ligament pain in my knees and back. Something is happening in my body anyway.

 

[godlovesatrier]

Interesting, I know a few others are experiencing this but I have definitely not experienced this in fact I don't think in my 5 years of being sick I've ever felt liver pressure.

When I was doing high dose thiamine I had a sudden onset of intense pain in my shoulderblades, neck and back. It was actually so painful I knocked myself out with some drugs and went tobed about 8pm. This went on for about a week probably. I am not sure if it was just ammonia and nitrogen etc, or if it was an immune response, a rapid die off of certain viral particles in that part of my body. Suffice to say stiffness in and around there is pretty much gone.

Amazing how you're feeling anyway, you sound pretty severe. THis gives me hope that more severe ME patients can follow this protocol, if they have the finances. Really glad it's working for you!
I can definitely feel it doing something too, it feels like a pretty robust protocol as it's definitely doing something every single dose I take.

 

[Reading_Steiner]

people on the internet are behaving unpredictably ! 【Shogun 2】Shameful Display

Liver pain...well it feels familiar somehow, I am guessing it has happened before to me in some sort of infection, flu maybe. It was quite noticeable a few days ago when this started but less so now, I just feel worn out in general and sleeping a lot or lying down, not leaving the house as much if at all.

 

[pamojja]

..Probably an artefact from my old CFS days.

PS. The supplement table you included was from 3.1 - I hope you've seen the dietary advice clarified in 3.2?

So many thanks for your dedication to respond to every question

You mean the low-carb advise?

...

Also I haven't seen you mentioning which nutrients to take with or without meals? Since you indicate AM, Noon, PM and Evening I assume the first 3 being with the main meals? What if one only eats twice a day?

Creatine Monohydrate I usually take 2g devided 3 times during the day without food. Read here on PM some had difficulty tolerating such huge doses, like 10g in one go. Can it be spread throughout the day? Or any spicific reasons to take it in the morning only?

Could the FOS powder also partially replaced with other prebiotics (resistand starches, inulin, pectin, acacia fiber..)?

 

[godlovesatrier]

I take pysillium husk myself. This stuffs amazing the scientific studies blew me away.

As for the creatine I don't take it. Pre ME lots of things seemed to make me very angry and violent. As violence and anger are family issues on my mother's side I think there's some sort of abnormality in the genes which predisposes the men to loosing it completely. Suffice to say I have to be careful with a lot of things as I can become physical with loved ones without even realising. From memory creatine and glutamic acid both can send me loopy. As can the amino acid profile in whey protein drinks. Although I'll probably try them again at some point.

I also liked your beta glucan post @pamojja

 

[pamojja]

I take pysillium husk myself. This stuffs amazing the scientific studies blew me away...

I also liked your beta glucan post @pamojja

Thanks. A very comprehensive write-up of all prebiotic fibers can be found at the undoctored forum: https://innercircle.undoctored.com/forum/topics.aspx?ID=19247 Though in the end its also said psyllium wouldn't act as prebiotic, don't know what's the source of this claim.

 

[godlovesatrier]

Not sure yeah. I researched it quite heavily. It calms intestinal permeability and repairs intestinal barrier levels to healthy. I am fairly sure it did help proliferation of microflora as well. But maybe there is something im forgetting.

Thanks for the link I'll check it out.

Didn't FOS get a really bad write-up on PR? I am sure I saw several threads that highlighted some downsides to taking FOS. Which caused me to go find pysillium husk.

 

[joshua.leisk]

I take pysillium husk myself. This stuffs amazing the scientific studies blew me away.

As for the creatine I don't take it. Pre ME lots of things seemed to make me very angry and violent. As violence and anger are family issues on my mother's side I think there's some sort of abnormality in the genes which predisposes the men to loosing it completely. Suffice to say I have to be careful with a lot of things as I can become physical with loved ones without even realising. From memory creatine and glutamic acid both can send me loopy. As can the amino acid profile in whey protein drinks. Although I'll probably try them again at some point.

I also liked your beta glucan post @pamojja

Based on the longer experiences I’ve witnessed surrounding people I’ve been working with who have schizophrenia and bipolar, I wouldn’t be at all surprised to learn that this is no longer an issue for you in the fullness of time.

Look up “bovine bonkers disease” in cattle if you’d like an example of how extreme nitrogen excess can be.

 

[godlovesatrier]

It would be nice if the sensititives calmed. But I've had them since birth so we will see. I was calmer in my teenage years but I don't think that means much on the whole.

I've seen plenty of therapists so all traumatic issues have been fully worked through. It's only when I take certain substances or immune modulators that I become angry, insecure and might get physically violent (this is rare but it tends to trend that way with sustained use). I'm not a violent person at all. So it really modifies my true base personality.

So you think it's primarily nitrogen excess? Interesting. I do feel a change occuring. The only thing I'm bothered about it the egcg. But my oat test should tell us whether that's working correctly right?

I will Google bovine bonkers

 

[godlovesatrier]

Just had a thought. I wonder if one of the reasons ME patients have sudden onset is because the body was already producing a dysfunctional environment internally way before the ME struck. But without any real symptoms or only very occasional symptoms.

Obviously someone like myself might feel fantastic prior to coming down with ME. But maybe it was boiling away underneath the whole time.

This wouldn't account for those suffering from infections which are sudden onset in themselves. Like Coxsackie B and the like. Especially as these are hard to treat and eradicate from the body.

 

[joshua.leisk]

Day 6.
On Sodium Benzoiate about 50% to control headaches at the moment.
Food wise still keto but haven't introduced the tofu/potato/rice/dairy mix as of yet nor the microbiome bits.

Liver still tender, some muscle pain in legs, upper back and my private region! GI unhappy taking Fybogel to control as constipation being made worse.

Overall I have more energy, POTS response test is now "normal", headache is much less problematic and I have had many afternoons without a headache for the first time in 7 years. Heart rate down 15 bpm on average. In terms of hummingbird scale I would say 25% up from 10-15%. I can walk about and do things mentally and physically challenging. Still haven't hit a PEM limit, I am not trying at this point just gradually and carefully doing more awaiting for mono hit.

So far it has proved worthwhile anyway, several days without a headache was worth the 300 notes this cost me regardless!

It’s a bitter sweet symphony and it gets better.

It would be nice if the sensititives calmed. But I've had them since birth so we will see. I was calmer in my teenage years but I don't think that means much on the whole.

I've seen plenty of therapists so all traumatic issues have been fully worked through. It's only when I take certain substances or immune modulators that I become angry, insecure and might get physically violent (this is rare but it tends to trend that way with sustained use). I'm not a violent person at all. So it really modifies my true base personality.

So you think it's primarily nitrogen excess? Interesting. I do feel a change occuring. The only thing I'm bothered about it the egcg. But my oat test should tell us whether that's working correctly right?

I will Google bovine bonkers

There’s seemingly a significant “programming” aspect to it, also - the nitrogen load can certainly act as a traumatic and wholly debilitating trigger, however the response patterns to that trauma may be learned from our environment and peers.. someone recently reminded me that aggressive behaviour can often be learned through overuse of negative reinforcement methods during childhood, often coupled with interrupted socialisation opportunities or limited outlets to express themselves meaningfully and be heard.

A lot of the discussions I have around this topic are often helping people consider that these things are not their fault and there are ways they can truly express themselves which help them release and communicate their feelings productively, without relying on actions that add fuel to any shame cycle.

In a nutshell, by helping someone understand why they felt a particular way, they may also come to understand why they don’t need to feel like that again in the future and you can then help them further by giving them better tools to process and conquer difficulties.

Life’s hard enough without carrying unnecessary baggage everywhere.

 

[joshua.leisk]

Just had a thought. I wonder if one of the reasons ME patients have sudden onset is because the body was already producing a dysfunctional environment internally way before the ME struck. But without any real symptoms or only very occasional symptoms.

Obviously someone like myself might feel fantastic prior to coming down with ME. But maybe it was boiling away underneath the whole time.

This wouldn't account for those suffering from infections which are sudden onset in themselves. Like Coxsackie B and the like. Especially as these are hard to treat and eradicate from the body.

I’ve heard a number of stories that indicate primary infection came via the placenta or during very early childhood.

My opinion, based on everything I’ve seen/read is that the increased androgens associated with puberty are liable to trigger lytic phase.

I’ve seen exogenous androgen use in young adults appear to trigger this state, twice in the last month alone.

 

[godlovesatrier]

That's where CBT can be useful, cheaper too if you can council your own thoughts ha!

 

[godlovesatrier]

Has anyone added extra protein in the form of whey protein yet? Isolated hydrolized to be specific. Standard whey protein doesn't do me much good, but isolate hydrolized appears to be really good apparently - thoughts?

https://uk.bodybuilding.com/store/d...ed-whey-protein-isolate.html?skuId=DYM4760056

I'm keen to get more protein into my diet once the protocol has done it's initial doo da