nerd
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@Martin aka paused||M.E. Is your test from Bavarialabs as well? I wish these markers would be tested more frequently, including EA and PCR. Most physicians only know VCA and EBNA.
How many of you have not found signs of persistent infection?
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Martin aka paused||M.E.
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You mean the interferons? It’s from lab4more (Dr. Bieger's lab). The EV test is from IMD Berlin. My EBV test in a local lab was non conclusive so I repeat it at IMD (Multiplex blot including EA, PCR was negative)
nerd
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Yes, Bavarialabs belongs to lab4more.
No, I haven't been convinced that some sort of persistent viral infection is responsible for my ME. If ME is caused by some sort of non-standard effect of a non-standard viral infection, such as semi-dormant viruses interfering with cellular mRNA, will the ARUP lab tests reveal it? I think it's also possible that we could have viruses that don't affect our ME, yet processing for a lab test could activate them and register as a problem, even though they aren't a problem in the body.
I suppose that if a virus was responsible for ME, I would expect to see much more supporting evidence from researchers and more verified success stories from antiviral treatments. A few success stories might be from people whose ME was kept active by a viral infection, but those might be rare cases rather than general cases.
I think the immune system can cause such symptoms, since the brain's immune cells do so many neural supporting/modifying functions. It would probably be quite difficult to prove that the immune systems can't somehow cause a specific symptom.
Martin aka paused||M.E.
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There is a lot of science on herpesviruses and EV. You just have to take it seriously... The very problem is the treatment! Because of immune exhaustion
wabi-sabi
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I don't really understand what this means. Can you be less metaphorical?
Yes, I think I'm literally being poisoned lol
This is my "malaise" and as such it is very difficult to describe. But the best description I have is the one you don't understand (and I don't blame you). I might take that to mean that you don't have this as a symptom, because when I first heard somebody describe their symptom like that, I immediately went "aaaah!"
It's like a yucky, dirty, sick feeling all over the body but particularly deep in my core. It's not nausea, it's not fever, it's not anything else I've ever felt. It's a very dirty feeling. It causes me to feel like I need to try and escape it. It makes somebody talking to me too much to bear. It's like the life has been sucked out of me. But ultimately it feels like there is something very toxic in my body. It feels foreign. Poisonous.
Which is why when I feel only a bit sick I feel absolutely euphoric.
sometexan84
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I know you haven't. You're a hard one to convince.
Yes @Wishful, the arup test will reveal all aspects of your ME, including pathophysiology, the cure, and a comprehensive interpretation of your astrological profile
wabi-sabi
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So very true. I don't think I do have this feeling.
Sometimes I feel like I am dying-I can feel my life energy draining away. I would describe it as the feeling of bleeding out or freezing to death in the snow- not that I've done either of these things! But the sick feeling deep in my core? No.
Someone has opened the spigot to my life force and is letting it drain out all over the ground. Watching yourself die like that is...terrifying.
heapsreal
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Ive used valcyte, and it helped. Not a game changer for me. Famvir seems more effective and less sides for me.
heapsreal
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Not sure i understand. Immune exhaustion from chronic infections or from the antivirals.
I agree of the immune exhaustion, maybe low nk function is a sign of this immune exhaustion??
heapsreal
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With high varicella titres, did you have chickenpox or an obvious shingles outbreak. Also possible to have internal shingles or mollarettes meningitis type of infections?
Martin aka paused||M.E.
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From chronic infections.
That's the strange thing. I had no such symptoms
Yay! I'm sure that the comprehensive interpretation of my astrological profile would be life-changing.
My question was about how limited the tests are due to overall knowledge of viruses. Before we knew of that mRNA effect on cells, it couldn't be tested for. So, ARUP can tell what known viruses you have, and test your known responses to viral infections, but it can't test for what we aren't yet aware of. I expect that it also can't actually tell whether a detected virus is responsible for a given set of symptoms. Maybe the virus is not causing any real problems, but the labs will interpret the cytokines and whatever else as due to the virus because that assumption would most likely be correct for otherwise healthy people.
If a person has a raging fever and a blood test shows large numbers of a specific virus, the likelihood of that virus being responsible for the symptoms approaches 100%. For some semi-dormant virus hiding in a small part of the body, and ME complicating immune system responses, it would be a lot harder for a simple--or even fairly sophisticated--test to accurately determine the effects of that virus.
wabi-sabi
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Yes, it's one thing to have a positive test result and another to know what that test result means.
I had chicken pox as a child, so that virus is still in me. Is it doing anything now? I doubt it.
BrightCandle
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The long hauling Penile Dysfunction guy I think shows that not only can a virus hide in the body and cause disruption only in certain places but also have this generic ME like body impact. They also completely hide from our ability to find it, he was not positive on covid tests at all despite having an active infection that was clearly causing a severe dysfunction. After that paper I consider there to be a great chance that what we find is the root cause of ME is ongoing viral infections, the pieces are really stacking up in that direction as viruses being the root cause.
But finding them and treating them is an issue. They don't appear in the blood in any traceable volume as they are local infections of certain cells and the body isn't putting up much of a fight (immune exhaustion?) and there aren't really any drugs that can help with a lot of viruses. So its absolutely possible, even likely that nothing of much will show up on a blood test for a viral infection but it could still be the cause, we have certain evidence of this with covid19 and I suspect strongly we will get it for other viruses in the coming years.
But finding them and treating them is an issue. They don't appear in the blood in any traceable volume as they are local infections of certain cells and the body isn't putting up much of a fight (immune exhaustion?) and there aren't really any drugs that can help with a lot of viruses. So its absolutely possible, even likely that nothing of much will show up on a blood test for a viral infection but it could still be the cause, we have certain evidence of this with covid19 and I suspect strongly we will get it for other viruses in the coming years.
Martin aka paused||M.E.
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The problem is that if a virus is non-cytolytic like EV living in your cell or a herpesvirus that reactivates from time to time you won't get rid of it with antivirals. As long as you don't produce a sufficient amount of certain interferons (or have an infusion with is really too costly - like IFN lambda for EV - you won't get rid of it.
Furthermore most AV don't pass the BBB. Autopsy studies showed viral DNA in brains.
So atm we won't go any further.
HDACi are interesting but very risky. Mild HDACi like byturates don't even knock at the door.
sometexan84
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Well, actually, when Dr. Chia's looking at persistent EV infection in ME/CFS, he says about 1/3 have it in the blood.
It's been found in other places too, it's just that it's almost ALWAYS found in the stomach.
In the majority, it's an over-active immune response. Like, a constant fight against a very evasive virus. The overactive immune response is almost certainly a contributor to the autoimmunity seen in ME/CFS/LC.
Didn't it say in Chia's latest presentation that it was only found in 1/3?
I've said this before, but I think it's important to note that Chia seems to report findings from mostly very severe patients. My guess... again, just a guess, is that only a small minority including severe ME/CFS patients have virus in the brain.
Martin aka paused||M.E.
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Possibly right. Might explain why I don’t improve until a certain point.