Testing for a coxsakie and enterovirus

junkcrap50

junkcrap50

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EddieB said:
That’s what we were asking for, and told no, only for current/previous patients. But call and give it a try, seems like my doctor couldn’t get anywhere.
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Hmm.. Seems like it's readily advertised on his foundation's website and available for purchase: https://www.evmedresearch.com/store/p1/Enterovirus_Protein_(VP1)_Immunoperoxidase_Staining.html

EddieB said:
Enterovirus and echovirus testing, sample drawn by Labcorp, sent to ARUP, about $800.
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That is after insurance or with no insurance?
 
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Markus83

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277
Hip said:
You can consider IMD Lab in Germany which provide individual antibody neutralization tests for CVB3, CVB4, CVB5 and EV6, EV30. These tests cost €34 each.
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I'm from Germany and it looks like my insurance would cover these tests.

@Hip What do you think, would this testing at IMD be sufficient or do I have to find another lab which covers all relevant serotypes? Testing at ARUP is definitively too expensive for me and I don't even know if I can send to them from Germany.

I'll try to find another lab in Germany which can test all relevant serotype. Maybe someone from Germany can help me with this already.
 
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knackers323

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Dr Chia has been treating patients for a long time now, does anyone know what sort of success he is getting?

If he is not taking any new patients it seems to suggest the treatment needs to be ongoing and isn’t achieving good results
 
Hip

Hip

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Markus83 said:
@Hip What do you think, would this testing at IMD be sufficient or do I have to find another lab which covers all relevant serotypes?
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Dr Chia John Chia observes that the CVB and echovirus serotypes most often found in ME/CFS are: 1

• CVB3 and CVB4 first and foremost
• Then CVB2, EV6, EV7 and EV9
• And then much less EV11

So you are covering the two most common CVBs, and some of the EVs.


There is also a coxsackievirus B antibody neutralization test available at the Hellenic Pasteur Institute in Greece for €68. This covers CVB1 to 6.
 
Hip

Hip

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Markus83 said:
Is there anybody who got tested at the Hellenic Pasteur Institute already?
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A few people, but it can be hard work getting it organized. They may also be busy because of coronavirus, as the HPI is the national lab in Greece.
 
Hip

Hip

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Markus83 said:
I just found that Erlangen University (Germany) also can test Coxsackie B1-B6 as neutralization test: https://www.virologie.uk-erlangen.d...e/dateien/Diagnostik/Anforderungsformular.pdf (first page, left side)
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Wow, interesting find! The "NT" I guess must signify neutralization. I will add Erlangen University to the enterovirus testing section of my roadmap.

If you can get some info on the price, and how to order the tests, please let me know, so that I can include it in the roadmap. Neutralization tests for enterovirus are very hard to find, so it's useful to know labs which offer them.


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.
 
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Markus83

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Hip, it's unclear if you can send your blood to Erlangen from outside Germany. Even we Germans must have a prescription from a doctor to get tested; you cannot just send your blood to a University lab like you can in the case of IMD. At least this is my experience with Frankfurt and Tübingen University. But I'll try to ask at Erlangen next week. I've been at Erlangen University a few weeks ago (Immunology) and they wanted me to do the Coxsackie NT, but this was not possible at that time because they needed testing resources for Covid19. But maybe it got better in the meantime.
 
Hip

Hip

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18,148
Markus83 said:
Even we Germans must have a prescription from a doctor to get tested; you cannot just send your blood to a University lab like you can in the case of IMD.
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Yes, sometimes labs may require a doctor to order your tests. I know one person who tried to get a test at the HPI in Greece, and the HPI told him he needs to get his doctor to order it. But another person who used HPI was not told this.

I think sometimes it may depend how you come across: if you seem to know what you are talking about, medically speaking, they may serve you. But if you sound like you do not know much about medical matters, then maybe they will tell you to get a doctor's order for a test. Maybe that's how it works, I don't know.

When I got a CVB1 to 6 antibody neutralization test at the University Medical Centre of Utrecht, in the Netherlands, they did not require a doctor's order. (Unfortunately Utrecht stopped doing the neutralization test).
 
Hip

Hip

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Markus83 said:
Yeah, look at this: https://www.kgu.de/fileadmin/redakt...ungsverzeichnis/LV_Virologie_August__2019.pdf

The Echo-Virus testing as well as Coxsackie B1-5 in Frankfurt are all NT (= neutralization test).
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That's pretty good. Though whether it is possible to get tested at Frankfurt as a private patient, that's another question.

It is possible that some other commercial lab in Germany might offer the CVB and echovirus tests performed at Frankfurt, sending the blood samples to Frankfurt for testing (like IMD do). So you might not be able to get tested directly at Frankfurt, but might get tested indirectly, via a commercial lab.
 
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Markus83

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I will try to talk to someone in Frankfurt if it is possible to send blood from outside Germany. At least from Germany with a doctors prescription it should be no problem.
 
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Markus83

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Short update: At the moment it is not posible to get tested at Erlangen or Frankfurt because they ran out of capacity due to Covid-testing. I'll ask again in 4 weeks and then I'll ask, too, if it is possible to send blood from outside Germany and what the prices are. Give me a reminder in 4 weeks if I don't give you an update.
 
Cipher

Cipher

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Markus83 said:
Short update: At the moment it is not posible to get tested at Erlangen or Frankfurt because they ran out of capacity due to Covid-testing. I'll ask again in 4 weeks and then I'll ask, too, if it is possible to send blood from outside Germany and what the prices are. Give me a reminder in 4 weeks if I don't give you an update.
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Any update? :)
 
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Markus83

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277
Cipher said:
Any update? :)
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No. I did not ask again. I have an appointment with my neurologist in September and before this I will talk with the Frankfurt lab if Coxsackie testing is possible again. It makes no sense for me to ask now because it's a long time till September in Covid-times. Besides this, Germany ramps up his Covid testing, so I doubt that they have capacity for Coxsackie testing at the moment and I fear they will have even less capacity in September.
 
sometexan84

sometexan84

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Hip said:
It's really tricky. Lots of people use LabCorp or Quest to order the ARUP tests, but very often LabCorp or Quest screw up and do the test in-house (which is the wrong test). See here.
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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.

@Hip
 
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