What tests should be done to ascertain if antivirals should be trialed?

BenFromNZ

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I have read in the past about various tests for different viruses (EBV, various herpes viruses etc), and also that some test don't pick up reactivated viruses so you have to do other tests to pick that up.

The truth is I am currently very exhausted and brain fogged, and I just don't have the energy to research things like I would have in the past so I'm hoping for a little help on what are the tests I need to do to cover all my bases as far as possible viral infections go. Unfortunately I didn't delve heavily into this in the past as I've always been trying other approaches but now I want to seriously investigate viruses and immune system issues. So I would like to know how to go about deciding whether I might be a candidate for trialing an antiviral.

Many thanks for any advice
 

BenFromNZ

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Check out Hip's roadmap, it's a great resource.
Thanks I did see that earlier and it’s looks like a great resource. Unfortunately it’s still quite a lot to process and figure out so I don’t have the mental strength to do that. I’m really hoping maybe someone who is in the know or has been through the process before can tell me what tests I need to ask for to make sure my bases are covered.
 

Cipher

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Thanks I did see that earlier and it’s looks like a great resource. Unfortunately it’s still quite a lot to process and figure out so I don’t have the mental strength to do that. I’m really hoping maybe someone who is in the know or has been through the process before can tell me what tests I need to ask for to make sure my bases are covered.
He also got a mini-roadmap that's more condensed.
 

BenFromNZ

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@Hip I understand that for some of the tests(like the Coxsackievirus B and echovirus antibody neutralization tests) we need to send them to the specified labs on your roadmap. But I was wondering if it is necessary for others..., like as an example, for the CMV IgG I've found labs in New Zealand offering that test- so I was wondering if any CMV IgG test is likely to be good enough or do we really need to use the labs mentioned? cheers
 

Hip

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But I was wondering if it is necessary for others..., like as an example, for the CMV IgG I've found labs in New Zealand offering that test- so I was wondering if any CMV IgG test is likely to be good enough or do we really need to use the labs mentioned?
It's only for enterovirus that Dr Chia discovered you need the more sensitive neutralization antibody tests to detect chronic infections.

For herpesviruses (EBV, CMV and HHV-6) regular ELISA or IFA antibody tests are fine. Although the HHV-6 Foundation do suggest that for HHV-6, you use IFA antibody tests, rather than ELISA (this is mentioned in the HHV-6 testing section of the roadmap).
 

BenFromNZ

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@Hip Also, the lab in NZ doesn't mention EBV EA diffuse IgG testing, but it does mention EBNA IgG - my understanding is that is the same test, is that correct?
 

Hip

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the lab in NZ doesn't mention EBV EA diffuse IgG testing, but it does mention EBNA IgG - my understanding is that is the same test, is that correct?
There are 3 different EBV antibodies that are normally tested for, and they are not the same:

EA = early antigen
VCA = virus capsid antigen (also denoted by CA)
EBNA = Epstein-Barr nuclear antigen

Each of these three also come in the IgM and IgG varieties.

Epstein-Barr virus EA antibody tests are hard to come by.
 

BenFromNZ

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There are 3 different EBV antibodies that are normally tested for, and they are not the same:

EA = early antigen
VCA = virus capsid antigen (also denoted by CA)
EBNA = Epstein-Barr nuclear antigen

Each of these three also come in the IgM and IgG varieties.

Epstein-Barr virus EA antibody tests are hard to come by.
Hmm, this is quite confusing because ARUP's own test page for the EA diffuse IgG test lists at the bottom "Aliases" for the same test and says that EBNA test is a synonym for the same test. (as you can see here -scroll to bottom https://ltd.aruplab.com/Tests/Pub/0050225). I will note though because of what you said I looked up if there was a separate test and test code for an EBNA test and there was. Still a bit confused why they would say it is the same test on that page though.
 
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Hip

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I think that ARUP page may be in error.

You can see from the graph below that EA, VCA and EBNA are different:
1627151737626.png
 

heapsreal

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Thanks @Hip it looks like I will be able to do most of the tests in NZ (and just found out the HHV-6 test at the lab here uses IFA).

Found this article tonight on a strong correlation of EBV reactivation in sufferers of Long Covid

http://news247.co.nz/technology/lon...ly-caused-by-epstein-barr-virus-reactivation/
I will be interested if you get titre levels of the viruses. It might help me to consider flying across the pond to get actual viral titres tested.
 

BenFromNZ

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I will be interested if you get titre levels of the viruses. It might help me to consider flying across the pond to get actual viral titres tested.
Funny, I was just looking into getting the EA diffuse test done in australia (which seems to be possible) if i can't get it done in New Zealand. Are you saying you've look into doing various tests there and it wasn't possible? Or are you saying they do the test but only confirm the presence and don't give you useful titre levels? Because I haven't asked about that, I was just looking at getting the tests done- I just assumed they would have the level on the results.
 

heapsreal

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Funny, I was just looking into getting the EA diffuse test done in australia (which seems to be possible) if i can't get it done in New Zealand. Are you saying you've look into doing various tests there and it wasn't possible? Or are you saying they do the test but only confirm the presence and don't give you useful titre levels? Because I haven't asked about that, I was just looking at getting the tests done- I just assumed they would have the level on the results.
All i have been able to get for viral testing is igm and igg positive or negative. No viral titre levels given. Ive enquired into several labs. VIDRL victorian infectious disease lab said they do viral titres for those infections but only if you have HIV. Got a no even if i payed for it myself.
My onset was from ebv, cmv, vzv. Lymphocyte sub set testing showed total T and most T cell subsets were elevated and pathology report said it indicates some type of infection going on. I did this test several months apart and got the same result so an educated guess we started on antivirals. Also have chronic moderate neutropenia and was in a griffith university cfs study which showed my nk function is low.
So with the immune tests leaning towards a chronic infection we assumed those initail viruses were still active and had improvement with famvir.
I have alot of posts about my famvir use on this forum all the way back to 2009.
 

BenFromNZ

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All i have been able to get for viral testing is igm and igg positive or negative. No viral titre levels given. Ive enquired into several labs. VIDRL victorian infectious disease lab said they do viral titres for those infections but only if you have HIV. Got a no even if i payed for it myself.
My onset was from ebv, cmv, vzv. Lymphocyte sub set testing showed total T and most T cell subsets were elevated and pathology report said it indicates some type of infection going on. I did this test several months apart and got the same result so an educated guess we started on antivirals. Also have chronic moderate neutropenia and was in a griffith university cfs study which showed my nk function is low.
So with the immune tests leaning towards a chronic infection we assumed those initail viruses were still active and had improvement with famvir.
I have alot of posts about my famvir use on this forum all the way back to 2009.
I see, thanks for letting me know, I will have to ask about that then. It will be a real pain if they don't. Initially i thought I'd have to send to the states, but I just imagine its going to be hard with the delays in shipping times from Covid.
 

heapsreal

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I see, thanks for letting me know, I will have to ask about that then. It will be a real pain if they don't. Initially i thought I'd have to send to the states, but I just imagine its going to be hard with the delays in shipping times from Covid.
From memory i think they have to have the blood within a certain time so express delivery needed and it was $$$. But if you can get a few people who are interested, you could share the shipping. NK function testing would help cement your immune dysfunction and probably chronic infections.
The lymphocyte subset test you should be able to get locally. Its all evidence that helps the dr feel more comfortable treating a cfser with antivirals.
Its also possible to have chronic bacterial infections. I got improvements with antibiotics as well, but again testing for common bacterial infections in cfs is hard to get as they are unreliable. So I've done a few treatment trials and feel better on antibiotics like doxycycline and bactrim. Im treating something, i just dont know what. Alot of chronic infection and immune testing here is limited compared to what ive seen in america and europe.
 

BenFromNZ

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Hey guys @Hip , @heapsreal ,

I've been emailing the head of immunology at one of the main labs here and told him that I need the actual titre levels rather than just a positive or negative result. Here's what he said in response:

"If you email me the results report you receive, I’ll email you back the raw quantitative results. Please note that CMV IgG will be in arbitrary Abbott units, EBV IgM will be a Sample/Cut-off ratio"

So do either of you think this information will be adequate?
 

Hip

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I've been emailing the head of immunology at one of the main labs here and told him that I need the actual titre levels rather than just a positive or negative result. Here's what he said in response:
That is the case with all ME/CFS doctors: they use the antibody levels (titer or index level).

Just being positive and low on an antibody test means you may have caught the infection in the past, and the infection is now dormant, or the infection has been entirely eliminated from the body. People typically maintain residual antibodies even decades after catching an infection. So positive and low means a past infection.

But if it is positive and high, then that signifies that you may have an active infection, and thats what ME/CFS specialists want to know.



So do either of you think this information will be adequate?
Which information, and adequate for what?