Have you tested for Enterovirus B? (+which lab, +results) POLL

[sometexan84]

Can Choose Multiple Answers

For the purposes of this poll, I would like to define "abnormal" results as a titer of 1:80 or higher.

 

[sometexan84]

@Studi Can I ask, which lab you used?

 

[Diwi9]

Why have you designed this poll as you have combining Coxsackie B and Echovirus? I tested positive for both (Coxsackie B4 and Echovirus 30) through ARUP Labs.

 

[sometexan84]

Why have you designed this poll as you have combining Coxsackie B and Echovirus? I tested positive for both (Coxsackie B4 and Echovirus 30) through ARUP Labs.

I listed separate responses for the combined testing and individual tests.

 

[sometexan84]

I guess not.

Oh, sorry about that. Yes, that should count. So you actually had a stomach biopsy? But never any antibody testing for it?

But I don't really know how to add an option like that, that would fit in...?

 

[sometexan84]

Antibodies test, as in the blood labs? Yes I had coxsackie/ echo virus blood test through ARUP. Those were negative. Logged in above poll.

Oh. So, you were neg w/ ARUP, but positive w/ the biopsy?

 

[Hip]

Oh. So, you were neg w/ ARUP, but positive w/ the biopsy?

The ARUP Lab echovirus test does not test for every echovirus, only the 5 most common. But there are 32 echovirus serotypes which can infect humans. It has also been speculated that there might be unknown enteroviruses out there which can cause ME/CFS, in addition to CVB and echoviruses.

So this may explain why patients can be negative on the ARUP test, but positive on the stomach biopsy, as the biopsy can detect all enteroviruses, even ones presently unknown to science.

At timecode 2:46 in this video, John Chia very briefly mentions a patient who was negative on ARUP but positive on stomach biopsy, saying "so this was one of the other enteroviruses".

 

[Dubitat]

Is Dr. Chia the only provider of the stomach biopsy test for enterovirus?

I'm somewhat skeptical of single provider niche lab tests that disagree with results of major labs like ARUP. I understand that Dr. Chia claims to test for a wider range of enterovirus variants, but I worry about false positives in some of these less proven tests.

 

[Hip]

Is Dr. Chia the only provider of the stomach biopsy test for enterovirus?

I'm somewhat skeptical of single provider niche lab tests that disagree with results of major labs like ARUP. I understand that Dr. Chia claims to test for a wider range of enterovirus variants, but I worry about false positives in some of these less proven tests.

Dr John Chia uses both stomach biopsy and ARUP lab antibody tests. I believe (I assume) these tests are usually in agreement.

It was Chia who discovered that ME/CFS patients often have high antibody levels on the ARUP lab micro-neutralization tests for coxsackievirus B and echovirus, whereas he observed you may not see these high antibodies on antibody testing using other methods like ELISA, IFA or CFT, which are less sensitive than neutralization.


It should be mentioned that the CDC agreed to test Dr Chia's formalin-fixed stomach biopsy samples for enterovirus, and the CDC were not able to find enterovirus in his samples (unpublished result). But the CDC had left the samples hanging around for a year before they got down to doing their study, so there has been some suggestion this may be the reason they did not find enterovirus.

I am not sure of the method used by the CDC, but Chia has used 3 methods of detecting enterovirus in these biopsies: a stain for enterovirus VP1 protein, PCR testing to detect enterovirus RNA, and a test to detect enterovirus dsRNA.

 

[sometexan84]

The ARUP Lab echovirus test does not test for every echovirus, only the 5 most common. But there are 32 echovirus serotypes which can infect humans. It has also been speculated that there might be unknown enteroviruses out there which can cause ME/CFS, in addition to CVB and echoviruses.

So this may explain why patients can be negative on the ARUP test, but positive on the stomach biopsy, as the biopsy can detect all enteroviruses, even ones presently unknown to science.

At timecode 2:46 in this video, John Chia very briefly mentions a patient who was negative on ARUP but positive on stomach biopsy, saying "so this was one of the other enteroviruses".

Thanks for this reminder. I need to remember this going forward

 

[Alvin2]

If any of you know about the High Expectations Asian Father meme he would say:

Why you look for Enterovirus B?
You want Enterovirus A+

 

[sometexan84]

@Hip
Hey, so doc wants me to do this Enterovirus RNA PCR test. Do you know much about this method and how it correlates w/ the usual testing we talk about?

Do you know what I should expect? Like, is this the sort of test that might end up being negative, despite my consistently high positive ARUP antibody tests?

https://testdirectory.questdiagnost...irus-rna-quantitative-real-time-pcr?cc=MASTER

I'm also supposed to do the PCR for EBV, which I've actually never done. These tests seem to serve no purpose in my opinion. They've already seen my positive labs for these. I hate that they're making me do these....

 

[Hip]

Do you know what I should expect? Like, is this the sort of test that might end up being negative, despite my consistently high positive ARUP antibody tests?

Yes, PCR a blood test will probably be negative, even though your tissues may have an enterovirus infection.

John Chia spent 5 years testing the blood of hundreds of enterovirus ME/CFS patients using sensitive reverse transcription PCR, and he found that sometimes you could detect enterovirus RNA in whole blood samples, but more often than not you would not be able to detect it. It was hit and miss.

And if you did detect it in a patient, the next time you tested that patient they might be negative again. Chia says this shows very little virus is found in the blood, which is why PCR detection is hit and miss.

However, when he tested severe bedbound ME/CFS patients, then this RT-PCR blood test would be positive around 70% of the time. So with severe patients, as you might expect, there is a little more virus in the blood, so the PCR test comes out positive more often.

 

[sometexan84]

Yes, PCR a blood test will probably be negative, even though your tissues may have an enterovirus infection.

John Chia spent 5 years testing the blood of hundreds of enterovirus ME/CFS patients using sensitive reverse transcription PCR, and he found that sometimes you could detect enterovirus RNA in whole blood samples, but more often than not you would not be able to detect it. It was hit and miss.

And if you did detect it in a patient, the next time you tested that patient they might be negative again. Chia says this shows very little virus is found in the blood, which is why PCR detection is hit and miss.

However, when he tested severe bedbound ME/CFS patients, then this RT-PCR blood test would be positive around 70% of the time. So with severe patients, as you might expect, there is a little more virus in the blood, so the PCR test comes out positive more often.

I was afraid of that.

 

[sometexan84]

Taken w/ a grain of salt... since not that many responses, but....

8 of 10 who've tested for either Enterovirus (coxsackie or echo), at a lab other than Quest/Labcorp, say Abnormal results.

 

[sometexan84]

Bump.

Hoping for more responses cause guys, these results so far seem significant.

If you don't count the Quest/LabCorp tests, or the Echovirus testing alone w/out the Coxsackie...

... then it's 10 of 11 Abnormal results.

and of course not counting the 7 who have not been tested.

 

[ChookityPop]

Tested positive for Coxsackie virus B3 and B5 via neutralization test from https://www.kgu.de/

 

[sometexan84]

Well then make that 11 of 12 have Abnormal results

If you don't count the Quest/LabCorp tests (because they just test the acute infection, which we don't have), or the Echovirus testing alone w/out the Coxsackie...

 

[Springbok1988]

I wish we had the same poll for healthy controls…

 

[Hip]

I wish we had the same poll for healthy controls…

For the ARUP lab tests, we do have the heathy control data: see the presentation slide in this post.

You can see that out of 150 healthy controls, all but 13 healthies had titers of 1:80 or less on the ARUP lab CVB and echovirus tests.