Testing for a coxsakie and enterovirus

[sometexan84]

what are the symptoms of enterovirus and or coxsakie?

For me, I had constant sinus infections and i had no idea why.

Later on, enterovirus in your gut can cause intestinal issues. Things never progressed further for me. But it's known to get into pancreas, cause more issues there. And I mean, it can really progress and get much worse from there.

Well in which case those HHV-6 IgG titers do not look very high to me, so probably not an issue; but only an ME/CFS doctor would be able to tell you for sure.

I have to disagree w/ Hip here. There's a lot of new evidence out there that suggest super low HHV-6 infections can cause serious CFS symptoms. Not only can a low HHV-6 infection wreak havoc, but it's very possible to have a solid active HHV-6 infection in organs that do not show in blood tests for IgG. In fact, it could show completely normal titers.

My above statement is obviously just a theory. But it's something that's concerned me a lot the past few weeks. Especially after Dr Prusty responded in an email to me the very same thing that I mention above.

Think about it. HHV-6 is known as a massive player in CFS. CFS often involves re-activation of latent/dormant viruses in your system, especially herpes viruses. So, in my case, when I did things that I shouldn't have that allowed my acute enterovirus infection to grow into a persistent chronic enterovirus infection, it re-activated my EBV.

I have very low HHV-6 titers. Lower than yours. But the fact that I have any HHV-6 antibodies means I had it at some point. If my enterovirus infection re-activated my EBV, why would I assume it wouldn't have also re-activated my latent HHV-6?

I have very little evidence to back this up. All I can say is, my HHV-6 titers are even lower than yours. I'm going to take Valcyte. And I'm going to see if I herx from it a few weeks in. Because I don't want to ever relapse. The end.

 

[Hip]

There's a lot of new evidence out there that suggest super low HHV-6 infections can cause serious CFS symptoms. Not only can a low HHV-6 infection wreak havoc, but it's very possible to have a solid active HHV-6 infection in organs that do not show in blood tests for IgG. In fact, it could show completely normal titers.

That possibly might turn out to the case, we will have to wait and see.

But to my knowledge, ME/CFS doctors will only treat HHV-6 if there are high antibody levels. So I am just reflecting current clinical practice.

 

[sometexan84]

But to my knowledge, ME/CFS doctors will only treat HHV-6 if there are high antibody levels. So I am just reflecting current clinical practice.

I had to send a bunch of info to my doc to get it.

 

[Hip]

I'd like to chime in on the Quest side of things. So, I have not had any success using the enterovirus ARUP test codes for Quest you find in the CFS Roadmap. If you go through Quest, I think now they put it in as Test Code 39651 "ARUP Laboratories Miscellaneous Order". And then the Quest people make a note of the ARUP lab test codes to be tested. It's been this way from at least June 2020 to now August 2020.

At Quest, they can't find the 59110 or 59117 codes in their system.

That's interesting. Would you mind reposting your findings on these codes in this thread, where all the discussion takes place the on ARUP lab coxsackievirus B and echovirus test codes used by LabCorp and Quest.

I will update the roadmap to include this new 39651 code.

 

[Emootje]

My september 2020 IMD coxsackie B3 neutralization test result: 1:20 [<1:10]
Did the blood drawn myself and send it from the Netherlands to Germany. It was so easy and cheap.
Thanks to @Hip and his excellent ME/CFS roadmap which explained which test and lab to use (thanks forever!!!).
In the past did a lot of not sensitive enough testing for detecting chronic enterovirus infection, best is to use the neutralization test, see below:

Old enterovirus test results:
2004: Cox 10, Echo <10, Pol <10 [negative <10] Radboud Nijmegen lab (I vaguely remember this was a CFT?)
2007: PCR Coxsackie stool: negative U-diagnostic's lab
2010: Cox B3: 16 Cox B1, B2,B4,B5,B6 <4 [negative <4] UMC Utrecht lab (neutralization test)
2011: Cox B3: 8 Cox B1, B2,B4,B5,B6 negative, Meirlier's lab (neutralization test)
2012: PCR Coxsackie/Enterovirus blood and stomach biopt: negative, Meirlier's lab
2018: Coxsackie virus IgA/IgG coxsackie virus: negatieve, Stein lab (ELISA?)
2018: PCR stool enterovirus: negative UMC Utrecht lab

 

[Hip]

In the past did a lot of not sensitive enough testing for detecting chronic enterovirus infection, best is to use the neutralization test, see below:

Does not look like you have any active coxsackievirus B infections, judging by your UMC Utrecht lab antibody neutralization test results, @Emootje.

I sent my blood serum sample to UMC Utrecht back in 2016, and had very high titers of 1:1024 to coxsackievirus B4, and not so high titers of 1:128 to CVB2.

So I would say I have an active CVB4 infection, but not sure about CVB2.

In the ARUP Lab tests, Dr Chia calibrated the threshold for chronic active infection to be titers of 1:160 and higher. This calibration cannot automatically be transferred to neutralization tests from other labs. because each test is slightly different. However, I think if you have very high titers from a neutralization test, you can consider that as evidence of an active infection.

Unfortunately UMC Utrecht have stopped offering their neutralization test, and only now do a complement fixation test for coxsackievirus B, which Dr Chia says is completely sensitive for the chronic infections found in ME/CFS.

 

[Emootje]

Does not look like you have any active coxsackievirus B infections, judging by your UMC Utrecht lab antibody neutralization test results.

My immune system is fighting something in the cell (have high NK cells and activity, high CD57+ and a Th1 dominance) and I was hoping that a mild chronic coxackie B3 infection was responsible for this immune activation. Plan is now to test again after an aggravation of my chronic flu-like symptom's (sinusitis, nausea, headache). If there is no titer coxsackie B3 increase, I'm going to focus on other viruses. Thanks Hip

 

[EddieB]

I'm going to focus on other viruses.

After testing negative for entero/echo virus myself, I’m looking at other possibilities. Most of my cfs symptoms revolve around gastritis/nausea/sinusitis as well.

I’m currently looking further at h-pylori. I’ve been tested in the past, but recently learned here that by using antacids during the test, the results can be skewed. Just did a stool antigen test; my doctor insists it will be accurate despite me being on antacids, but I have my doubts.

Also reading there are other less common forms of helibacteria...
https://academic.oup.com/cid/article/36/3/349/354056

And that h-pylori can cause multiple other symptoms, like hives...
https://www.consultant360.com/articles/chronic-urticaria-associated-helicobacter-pylori-infection

 

[Hip]

The viruses that ME/CFS doctors usually test for are coxsackievirus B, echovirus, Epstein-Barr virus, cytomegalovirus, HHV-6, varicella zoster and parvovirus B19.

 

[Cipher]

I was told that University of Frankfurt do tests for CVB1 to 5, and EV 4, 6, 7, 9, 11, 25, 30. But I was not able to find out whether those were neutralization tests. I understand that IMD send some of their enterovirus tests to Frankfurt.

The Echo-Virus testing as well as Coxsackie B1-5 in Frankfurt are all NT (= neutralization test).

@Hip @Markus83 Would any of you happen to know the price of the coxsackievirus/echovirus antibody neutralization panels performed at the Universitätsklinikum Frankfurt am Main? I've sent an email to one of the directors who I've been told can answer, but she's on vacation.

 

[Markus83]

@Hip @Markus83 Would any of you happen to know the price of the coxsackievirus/echovirus antibody neutralization panels performed at the Universitätsklinikum Frankfurt am Main? I've sent an email to one of the directors who I've been told can answer, but she's on vacation.

I don't know. But if every subtype is tested separately, which would make over 10 different tests, I think it will lie between 500 - 1000 €. But that's just a guess.

The main question for me is if NT testing is available again. Do you know if that's the case? I did not ask again since my first call ( #36 ).

 

[Hip]

Would any of you happen to know the price of the coxsackievirus/echovirus antibody neutralization panels performed at the Universitätsklinikum Frankfurt am Main? I've sent an email to one of the directors who I've been told can answer, but she's on vacation.

I don't know, but at IMD Berlin, each of the 6 coxsackievirus B tests are €34.

 

[Cipher]

@Hip @Markus83 The director now replied that the tests cost 34,19 EUR per serotype, and that they currently perform the analysis once a week. That means their panels cost:

Coxsackie B1, B2, B3, B4, B5 170,95€
Echovirus 4, 6, 7, 9, 11, 25, 30 239,33€
Coxsackievirus A9 (classified as enterovirus B), A16 68,38€

When I called them earlier they said that they can receive samples from abroad (at least from within the EU), and that their shipping address is the one at the top left on their request form.

 

[Markus83]

@Cipher Do you know how much blood (serum) is needed if you want all tests? I think one serum tube would be not enough.

 

[Cipher]

@Cipher Do you know how much blood (serum) is needed if you want all tests? I think one serum tube would be not enough.

I asked the director what volume of serum is required for these NT panels and she said 1ml would be enough. I'm unsure if she meant for all 3 panels, or per panel. She also made clear that it needs to be a serum sample and not plasma.

 

[Hip]

The director now replied that the tests cost 34,19 EUR per serotype, and that they currently perform the analysis once a week.

Great find, Cipher. I think I should include University of Frankfurt in my roadmap.

When I called them earlier they said that they can receive samples from abroad (at least from within the EU), and that their shipping address is the one at the top left on their request form.

Is this pdf their request form, do you know?

 

[Cipher]

Is this pdf their request form, do you know?

From what I can tell, yes.

Great find, Cipher. I think I should include University of Frankfurt in my roadmap.

Great! To be precise it's the Institute of Medical Virology, University Hospital Frankfurt am Main (Institut für Medizinische Virologie, Universitätsklinikum Frankfurt am Main).

 

[Markus83]

Thanks to @Cipher and my neurologist I will send my blood to Frankfurt tomorrow and am curious what the results will look like.

 

[Markus83]

My results came back, I have attached them. I'll have to do some research what they tell me because the lab says: "Antibody tests are negative or unsuspicious positive."

 

[Hip]

My results came back, I have attached them. I'll have to do some research what they tell me because the lab says: "Antibody tests are negative or unsuspicious positive."

Looks like you have high titers to echovirus 9, 11 and 30, all above 1:160.

On the ARUP Lab enterovirus tests, Dr Chia calibrated this against ME/CFS patients and healthy controls, and determined that titers of 1:160 and above are indicative of chronic active infection.

While this threshold of 1:160 only applies to ARUP Lab, because tests from different labs may have different sensitivities, as a rough guide I suspect it may be OK to consider titers of 1:160 and above as possible evidence of active infection.

You also have coxsackievirus B3 and B4 at 1:80, which is one step just below 1:160.