Atypical ME/CFS

[sometexan84]

Do you have psoriasis?

Guttate Psoriasis here

 

[sometexan84]

I really don't know how to proceed and after the last crash two days ago I'm losing hope that I find sth.

Didn't you say you had super high coxsackie B4 titers, like 1:640 or something?

You might not see consistency in cytokines, but many don't. But your CVB titers seem pretty consistent w/ others.

Pretty much all Enterovirus test results I've seen in PR have been high like yours, minus 1 person who only had one that was 1:80... but turns out they had Lyme.

Also seems CVB4 might be the most common, at least for the people in this forum. Looks to be mentioned the most, often at 1:160, 1:320, and 1:640.

All that said, I would proceed in this direction.

 

[DrUniverse]

Neutrophils High or low?
I believe the whole illness is an exhaustion of Lymphocytes explict CD8+
A viral infection gets under various reasons out of control. The Symptoms are the biochemical result of this highly active and chronical infection.
Mitochondrial Fragmentation etc.
Atp dont need to be low, the conversion cycle to ADP and back is fucked. This Hits in the Moment you start moving your body.
The IL-6,IL-10 is kinda random every body with Different genetics reacts Different.

Its like a big fire in the Amazonas which gets outta control and you need that big big airplane Full of water for rescue.

 

[Martin aka paused||M.E.]

Neutrophils High or low?
I believe the whole illness is an exhaustion of Lymphocytes explict CD8+
A viral infection gets under various reasons out of control. The Symptoms are the biochemical result of this highly active and chronical infection.
Mitochondrial Fragmentation etc.
Atp dont need to be low, the conversion cycle to ADP and back is fucked. This Hits in the Moment you start moving your body.
The IL-6,IL-10 is kinda random every body with Different genetics reacts Different.

Its like a big fire in the Amazonas which gets outta control and you need that big big airplane Full of water for rescue.

Neutrophils normal but lymphocytes are very low.

CD8 count is normal (CD4/8 borderline low at 1.18) but proliferation of t-cells stimulated with different pathogens (LTT) showed a T-cell exhaustion (a reduction of the immune function).
Goes hand in hand with MBL being below the detection limit.
My whole immune system is completely fucked. Doesn't matter what I test it comes back dysfunctional. But I don't think that it's the reason why I don't get better. I think it's a downstream effect.

Didn't you say you had super high coxsackie B4 titers, like 1:640 or something?

Hm yep. I take Equilibrant and Tenofovir. I'm a bit skeptical though because I think around 60% catches CB4 during their lifetime and it's only a kind of AB test. But in my opinion my worsening in 2017 at least is caused by an enteroviral infection. I just don't know if it's really only CB4 bc they only tested for a few s
saisonal enteroviruses.
Next week I watch the IAMECFS and hope that Chia has sth new.

Guttate Psoriasis here

Same! But no outbreak since 2016.

 

[MartinK]

@Martin aka paused||M.E. MIF test is in IMD? Probably not find it.
Lab4more is quality? I used only IMD in past.

Hope you find some new answers!
btw. did you tried ALCAR + Bromantane? Looks like for some works like Abilify, what I read on reddit.

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. MIF test is in IMD? Probably not find it.
Lab4more is quality? I used only IMD in past.

Hope you find some new answers!
btw. did you tried ALCAR + Bromantane? Looks like for some works like Abilify, what I read on reddit.

MIF was tested at Lab4More. They offer some things that you can't find anywhere else. I would say it's a good lab.

I wanna try ALCAR+Bromantane but I still have to get Bromantane.

 

[MartinK]

@Martin aka paused||M.E. Nice! Will look at this lab, hope its easy to send samples from Czech Republic to this lab. IMD like because always send me all tubes and material.

I thinking about buy Bromantane here

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. Nice! Will look at this lab, hope its easy to send samples from Czech Republic to this lab. IMD like because always send me all tubes and material.

I thinking about buy Bromantane here

Might be difficult with customs

 

[DrUniverse]

Im sure you mentioned it some where but How are your EBV , CMV and HHV6 Titers?

What you mean by down Stream effect?
So the low Lymphocytes are the result of the viral infection as i think (at least in my case)
The Exhaustion of B Cells gets worse over time. Thinks like Abilify counter act that through immune simulation, i read you took Delimmun obviously no success right?

 

[Martin aka paused||M.E.]

Im sure you mentioned it some where but How are your EBV , CMV and HHV6 Titers?

What you mean by down Stream effect?
So the low Lymphocytes are the result of the viral infection as i think (at least in my case)
The Exhaustion of B Cells gets worse over time. Thinks like Abilify counter act that through immune simulation, i read you took Delimmun obviously no success right?

I can't find any infection except CB4 titers, positive for IGM for HSV I/II while PCR is negative and HHV-6 IGG and PCR blood and saliva <400 copies while serum 0 copies.

I mean that immune exhaustion is not the source of my weakness. --> downstream effect.

Delimmun with no immune response as well as Equilibrant right

 

[sometexan84]

Same! But no outbreak since 2016.

Did you do an ASO test for Streptococcus Pyogenes? Prob need to make sure these levels are normal. And easy to treat.

Hm yep. I take Equilibrant and Tenofovir. I'm a bit skeptical though because I think around 60% catches CB4 during their lifetime and it's only a kind of AB test. But in my opinion my worsening in 2017 at least is caused by an enteroviral infection. I just don't know if it's really only CB4 bc they only tested for a few s
saisonal enteroviruses.

I actually think Equilibrant does not usually work on B4 for some reason. I would look into probiotics. You might like this if you haven't read - Inhibition of coxsackievirus B4 by Lactobacillus plantarum.

It does seem to be quite common to have more than one EV infection around these parts.

 

[Martin aka paused||M.E.]

Did you do an ASO test for Streptococcus Pyogenes?

No, I havent
My doc said it's not necessary I would have symptoms and it would show up in my other test results (Procalcitonin, CRP). I don't know if that's accurate.

I actually think Equilibrant does not usually work on B4 for some reason

Hm, why? I think it doesn't work bc my immune system is so fucked.

I would look into probiotics.

I'm quite skeptical that these really have enough antiviral properties but it's cheap trying those, why not

It does seem to be quite common to have more than one EV infection around these parts.

yeah, they only tested B2,4,5 and E6,30. The rest was negative Influenzaviruses. I hope Tenofovir will be sufficient bc it's cheap and I tolerate it well.

I read you already take remdesivir. That's besides some other things like epivir interesting too.

 

[sometexan84]

I read you already take remdesivir. That's besides some other things like epivir interesting too.

I'm actually not taking anything at the moment. That should change here soon.

As for B4, I don't know why Equilibrant isn't as effective. Doesn't work on Echovirus either. Maybe has to do w/ CBV4's cell tropism for Natural Killer Cells? I know NK cells operate differently to Th1 and Th2... and Equilibrant is basically a drug that does nothing but alter the Th1/Th2 balance... so.. idk, maybe something there.

The probiotics, you have to think of them as support. Prob not a lot of direct antiviral effect. But they have the potential to alter your innate immune response, including interferon activity.

 

[katebrownell86]

Do you have splenomegaly? Have you tested that?

 

[Martin aka paused||M.E.]

Do you have splenomegaly? Have you tested that?

And don’t know f it’s splenomegalie but my spleen showed up a bit bigger than usual on sonography… but the docs didn’t do anything nor diagnosed sth related

 

[MartinK]

Just arrived my results from Lab4more - and have HIGH MIF too (2000 pg / ml)
Have you tried to take a closer look or find out how important this finding is @Martin aka paused||M.E. @WantedAlive ?

I'm going for a some big treatments, but of course I would like to relieve my body as much as possible from inflammation during that.

thx!

 

[Martin aka paused||M.E.]

Just arrived my results from Lab4more - and have HIGH MIF too (2000 pg / ml)
Have you tried to take a closer look or find out how important this finding is @Martin aka paused||M.E. @WantedAlive ?

I'm going for a some big treatments, but of course I would like to relieve my body as much as possible from inflammation during that.

thx!

No, I haven't. Nobody can tell me.
What ‘big treatment”?

 

[MartinK]

Today I ordered some ellagic acid - looks like it may help.
Treatment - looks like (I'm still deciding on the timing) FMT by microbioma + antivirals + IFN lambda + GcMAF.

Everything seems to be that my immune system is very suppressed and can't fight the reactivation of some viruses and all this is also caused by a bad GI.

 

[vision blue]

Wouldn't the "positive spleen" be enuf to get you taken seriously by conventional ID docs? (assuming you want that).