ME/CFS Research: Herpes Autoimmune Spectrum Disorder

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Second star to the right ...
@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?
I didn’t get even a vague whiff of “infantilizing” in your post.

On the contrary. What struck me was your concern for a new PR member who might be not be fully aware of the not inconsiderable dangers implicit in the off-label use of a potent anti-psychotic which has a considerable and impressive profile of side effects, ranging from the unpleasant to the potentially crippling.

It was very kind, as well as very gentle.
 

hapl808

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A few questions on starting the 3.3 spec.

I have some specific questions (like should someone remove rice, potato, or other carbs when starting - or best to have removed them days before?). Also the replacement of the B vitamins I guess with a multi?

I could ask individually, but more generally I think before you had more explanation of what each item did in the spec and maybe how to adjust it individually? Which are the core requirements, which things can be increased or decreased depending on immune response, etc?

I know I would do extremely poorly adding 10-12 supplements multiple times per day suddenly, so it would be great to know the best way to ease into the process.

For those of us that have sensitive digestion, suddenly taking 16 multis, 20k IU of Vitamin D, 2400mg of NAC, etc - would be difficult and guaranteed to lead to major digestive problems and likely poor absorption. However I've had good luck building up my dosage of various things and allowing my body to adjust. Is that possible in this system? Even just creatine - I've tried monohydrate and HCL in the past and noticed no benefits. Would that still be important to take?

Also, you mention a specific probiotic. I think someone asked about it, but I didn't see a reply. Is that the best one for a specific reason? Would yogurt or cottage cheese or other sources of probiotics be better or worse?

And another specific question - the BCAA or benzoate or LOLA - what is it removing the ammonia from? Is there something else that is triggering the dumping? I wasn't clear on what 'starts' the protocol working.

Thanks for your details on all this!
 

joshua.leisk

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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. 🥰
Sorry, that's very fair - I should have been more clear. 50% of the "primary issues" which have been discussed as the "goalposts".

There's all of the secondary cascade / reflex, which are downstream from low a-KGDH : high GDH.

In the model:
1. severe cognitive issues, akathesia, anxiety, depression
These primarily relate to issues with
- tyrosine depletion, which comes from phenylalanine overuse for phenylacetylglutamine synthesis issues from excess ammonia production, further causing acetyl-coa depletion.
- resulting dopamine and thyroxine deficiency (phasic), thanks to tyrosine low-availability.
- excess metabolism of myo-inositol, causing inositol deficiency.
- excess metabolism of other B vitamins, causing deficiency / cycle impairments (used for maintaining succinate, during a-KGDH impairment, once aspartate runs low).
- serotonin homeostasis, as a see-saw from dopamine and antibodies (lytic)
- antibodies for dopamine receptors, adrenergic receptors (lytic phase) and excess catecholamines produced which cause anxiety. These are created to primarily compensate for the beta-oxidation insensitivity.
- inflammation from hepatic encephalopathy, ROS.
- inflammation from phosphatidylcholine pathway impairment.
- sphingolipid synthesis impairment via cofactor depletion.
- GABA reduction (used for maintaining succinate, during a-KGDH impairment, once aspartate runs low).

2. fatigue
This is more complex, however the fatty acid oxidation pathways are affected in two places.
- Beta-adrenergic signalling dysregulation thanks to acetyl-coa depletion (latent) and antibodies (lytic). This also relates to orthostatic intolerance. This causes cortisol dysregulation, also.
- cAMP being impaired.
- Low thyroxine
- There's also the issue from the sleep deprivation / unrefreshing sleep, which relates to GABA:glutamate balance and melatonin signalling. This can be an additional factor for the head pressure, also.

We've recently found a small number of people who appear to have (some confirmed with serology) a co-infection to T.gondii and benefited from an additional plant extract that kills that efficiently parasite. (I suspect other parasites will have similar behaviour / response.)

3. issues with menstrual cycle
This one has a few factors, also.
- There are complications with the tissue health, which relates to HIF-1a, which relates to the hypoxia, low a-KGDH.
- There's also issues with e2 : DHT balance, caused by DHT metabolism issues and 3-HSD. The 3-HSD issue we further address in 3.3 with sulforaphane and related compounds.
- There's also a feedback loop for blood pressure / RAAS as part of the cycle, via hormonal signalling and blood volume reduction.

4. headaches and head pressure, insomnia
The main causes of encephalopathy and insomnia in this model relate to glutamate:GABA and ammonia.
- Normally, this relates again to a-KGDH low : GDH high and accumulated nitrogen. NMDA blunting from ammonia.
- There may be additional causes for this, with co-infections, such as T.gondii, HPV, other.
- Melatonin synthesis issues.

5. food intolerances
This one is multifactoral, also.
- HIF-1a signalling breakdown leading to skin, gut barrier issues via collagen synthesis impairment, prolyl hydroxylases.
- Zonulin overexpression, thanks to gut microbiome dysbiosis, SIBO from gall-bladder / bile metabolism issues.
- LPS-positive bacteria, causing gut barrier inflammation and leakage.
- Immune system dysregulation / mast cell activation, downstream of Platelet Activating Factor increases from the increased LDL (produced by lytic phase) coupled with low acetylhydrolase (from low acetyl-coa) and sphingosine-1-phosphate issues downstream of the P5P issues, plus cortisol dysregulation.

There are hundreds of other impacted pathways. Having had the pleasure of recently working with Metabolon data, it becomes very clear how broad the impact is and follows the model as downstream factors from the cascades we've described.

CFS/ME is highly debilitating, when untreated.
 

godlovesatrier

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Wow that's one hell of a write-up @joshua.leisk . If you were a business analyst I'd be in love 🤣

Do you think higher doses of thiamine beyond 200mg a day as in v 3.2 would be effective in modulating HIF so that it would be beneficial within the protocol? Not that I feel I need to do this personally. It's just a wider question for the protocol.

Day 27 now. I'm still waking up without fatigue even at a slightly lower egcg dose. 165mg 2x a day now I think. Of course the 2nd covid jab is giving me some fatigue but I don't wake up feeling unrefreshed. In fact I'm waking up after 8 hours sleep good to go and I seem to stay that way until I go to bed.

Still working on getting the sleep balance right. But it's been such a long time since I was at my body's own healthy normal you can imagine how difficult I am finding it in remembering what that was. I'm basically getting about 8 hours if I remain asleep for those 8 hours instead of getting 10 every night just to give my body even more time to do "something" which made the muscle fatigue better. No idea what that was.

Going to see how I get on today anyway still pacing cautiously currently at the start of the jab.
 

godlovesatrier

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I just had my usual immune response. Dry mouth for 2 weeks, no energy was in bed for 3 days on and off on two separate occasions. I also had intense nausea and vomited once.

I never had liver pressure or a fever but that might be because I've taken anti viral / anti bacterial remedies that are pretty potent since I got sick. First 2 years was Siberian ginseng. Next 2 years was andrographis paniculata. After that it was a combination of anti viral tinctures and andrographis. If I hadn't done that maybe the symptoms would have been more severe. Just a theory.
 
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I just had my usual immune response. Dry mouth for 2 weeks, no energy was in bed for 3 days on and off on two separate occasions. I also had intense nausea and vomited once.

I never had liver pressure or a fever but that might be because I've taken anti viral / anti bacterial remedies that are pretty potent since I got sick. First 2 years was Siberian ginseng. Next 2 years was andrographis paniculata. After that it was a combination of anti viral tinctures and andrographis. If I hadn't done that maybe the symptoms would have been more severe. Just a theory.
Hm. There shouldn’t be nothing of these drugs in your body anymore
 

godlovesatrier

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Yes but if we assume that the deep infective tissue viral load takes years to accumulate which can probably be explained partly via the mitochondrial breakdown in Josh's paper. I see the breakdown described in the paper as a possible explanation for the degenerative aspect of the disease and why someone would go to severe over time. Not immediately.

With that in mind as the immune system looses it's grip more and more the dormant viral load rises and spreads into more and more tissues. For me I really don't think it can only be the liver but it makes sense that it could be. I wasn't aware that viruses lived long term in liver tissue without being picked up by the immune system.

Anyway as it spreads this would get worse. If each successive traditional remedy "pauses" or reverses the deep tissue viral replication by 10% either of these would be enough to ameliorate the worst long term effects within Josh's disease model.

However without rectifying the krebs cycle issues it matters not because the body wont be able to make use of the better state. You might feel better for a bit yes but long term your body returns to tie prior state. I've seen my body return to how it felt when I discontinue everything and get worse as even more time goes by on several occasions ove 5 years.

So it's just a theory of mine. I could be totally wrong @Martin aka paused||M.E.
 
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Yes but if we assume that the deep infective tissue viral load takes years to accumulate which can probably be explained partly via the mitochondrial breakdown in Josh's paper. I see the breakdown described in the paper as a possible explanation for the degenerative aspect of the disease and why someone would go to severe over time. Not immediately.

With that in mind as the immune system looses it's grip more and more the dormant viral load rises and spreads into more and more tissues. For me I really don't think it can only be the liver but it makes sense that it could be. I wasn't aware that viruses lived long term in liver tissue without being picked up by the immune system.

Anyway as it spreads this would get worse. If each successive traditional remedy "pauses" or reverses the deep tissue viral replication by 10% either of these would be enough to ameliorate the worst long term effects within Josh's disease model.

However without rectifying the krebs cycle issues it matters not because the body wont be able to make use of the better state. You might feel better for a bit yes but long term your body returns to tie prior state. I've seen my body return to how it felt when I discontinue everything and get worse as even more time goes by on several occasions ove 5 years.

So it's just a theory of mine. I could be totally wrong @Martin aka paused||M.E.
Without the real immune response your body won’t kill the viruses and you will stay sick - as far as I understand
 

godlovesatrier

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I actually had a dream last night about a doctor in the future removing some sort of pathogen from the sinuses with some sort of vr interfaced to nanobots device. You know your brains into something when your dreaming it 😂

In Josh's model you need to have herbs that signal for apoptosis on the right cells and boost the immune response yep. Not sure if I understood your question fully tho so let me know if you were asking me something else :)
 
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I actually had a dream last night about a doctor in the future removing some sort of pathogen from the sinuses with some sort of vr interfaced to nanobots device. You know your brains into something when your dreaming it 😂

In Josh's model you need to have herbs that signal for apoptosis on the right cells and boost the immune response yep. Not sure if I understood your question fully tho so let me know if you were asking me something else :)
I mean a real immune response against viruses goes hand in hand with fever and often pain, sweating ... we all know that from Heavy colds or influenza
 

mariovitali

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@joshua.leisk

I think you will like this :

Impact of anti-androgen therapies on COVID-19 susceptibility: a case-control study in male population from two COVID-19 regional centers of Lombardy (Italy)
Importance There are gender differences in vulnerability to the Coronavirus disease 2019 (COVID-19), with men experiencing more severe disease at any age. The use of anti-androgen drugs, like 5-alpha reductase inhibitors (5ARIs), could protect from severe pulmonary disease.




https://www.medrxiv.org/content/10.1101/2020.04.20.20068056v2
 

Boba

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Did anyone have a strong immune response?
yes briefly but it only lasted around 2 days.. Its never been as debilitating or painful as Joshua said we should expect. It seems to come and go but often its quite mild, the last one was a few days ago. I've been experimenting with different variables to try and figure out whats going on, it seems to often coincide with with a rise in EGCG ( green tea extract ), but if I maintain it at the higher level the fever doesn't persist. Tried raising vitamin D this week and I have a feeling it made me worse, but it could just be a normal crash caused by over exercise.

My general experience on the protocol is an overall reduction of negative symptoms e.g. aches and pains, headaches, brain fogs, needing to sleep multiple times per day, MCAS, stomach issues etc. I get up the stairs much easier and more recently I've noticed that in some more ... private areas of life my stamina increased in seemingly impossible ways. Downside is I haven't been able to study science properly since starting the protocol, my brain seems like it wants to stay switched off in some ways, but in other tasks and general feeling its similar or better. Also it seems that if I do crash and the negative symptoms come back, I can lessen it with 5g BCAA, Joshua says 10g but that would be an overdose according to the label. Succinnic acid also removes all the aches and feeling of lactic acid / low oxygen etc, but it doesn't seem to fully restore energy / fitness when you are in that super tired worn out state, whereas the first time I took it, it seemed to unlock my full potential.
 
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