1:16 titer for Coxsackie B; should I be concerned?

[Craig972672]

Also, here are my results for the CB test. Echovirus was completely undetected but it appears I definitely have a Coxsackie B issue, especially type 4.

 

[Hip]

I was able to get both ARUP tests done through Quest in Feb of 2022 using the instructions in this thread. I really appreciate all who shared info. I wanted to post the details of how I did it, in case it helps anyone.

Thanks very much for posting those instructions. That's very useful for other patients.

here are my results for the CB test. Echovirus was completely undetected but it appears I definitely have a Coxsackie B issue, especially type 4.

By Dr Chia's criteria of an active infection being titers of 1:160 to 1:320 or above in these ARUP tests, it looks like two active coxsackievirus B infections, 3 and 4.

I was hit by a really nasty strain of coxsackievirus B4 back in 2003, and this virus spread to all my friends and family, triggering serious health (both physical and mental) in many who caught it. Even a decade after catching it, my titers on a CVB antibody neutralization test (not ARUP's) were sky high at 1:1024.

See this thread for info on the "mini epidemic" of disease my CVB4 virus caused.

 

[vision blue]

What percent of people without CFS test positive for each of these viruses? (Preferably the data are available for each of the assorted test thpes)

 

[Hip]

What percent of people without CFS test positive for each of these viruses? (Preferably the data are available for each of the assorted test thpes)

Lots of healthy people test positive for one or more of these enteroviruses, but very few healthies have high titers as you find in ME/CFS patients. Dr Chia tested hundreds of patients and healthy controls using the ARUP Lab tests, and publicized his data in his videos.

 

[GlassCannonLife]

Has anyone here (with ME) had an ARUP test done and been negative to all of them..?

 

[EddieB]

Has anyone here (with ME) had an ARUP test done and been negative to all of them..?

I’m negative (like not a spec) on ARUP blood tests. But stomach biopsy was 2+ positive for entero virus.

 

[vision blue]

Lots of healthy people test positive for one or more of these enteroviruses, but very few healthies have high titers as you find in ME/CFS patients. Dr Chia tested hundreds of patients and healthy controls using the ARUP Lab tests, and publicized his data in his videos.

Just in videos or in peer reviewed journal articles?

 

[Hip]

Just in videos or in peer reviewed journal articles?

In his Invest in ME London presentations, and various other conference presentations, see here: Dr Chia, Symposium on Viruses in CFS 2008, timecode 10:34

Here Dr Chia explains how he calibrated the ARUP lab enterovirus antibody neutralization tests for use in ME/CFS viral infection diagnosis. The slide you see in that video is detailed further in this post.

There various Invest in ME London videos by Dr Chia are very informative for learning all about enterovirus in ME/CFS. There's a list of these videos on Dr Chia's MEpedia page.

For a deeper understanding of chronic enterovirus infections, see Prof Nora Chapman's Invest in ME London videos.

(But we are taking this thread off topic somewhat, as this thread is mainly focused on the significant difficulties in getting ARUP Lab tests).

 

[sometexan84]

I was able to get both ARUP tests done through Quest in Feb of 2022 using the instructions in this thread. I really appreciate all who shared info. I wanted to post the details of how I did it, in case it helps anyone. I'm located in the Dallas, TX area.

1. I asked my Doctor's office to put in two electronic Quest orders using the miscellaneous ARUP Quest order code, which is 39651.
2. In the notes for each order, I asked them to put the ARUP test code for the proper test. These are 0060055 and 0060053
3. Also in the notes for each order, I asked them to write "Test must be performed by ARUP labs. DO NOT substitute in-house tests"
4. I printed the test details for both tests from the ARUP website and brought them to the Quest lab.
5. There was some confusion from the Quest tech about the order but I just asked her to take the blood, send it to the distribution center (or wherever the ARUP quest code specified) and include the ARUP website printouts in the container with my blood.
6. About a week later, my Doctor's office confirmed that the blood did actually make it to ARUP labs (by calling them)
7. About a week after that, I received a notification from Quest that results were ready on their website portal. However, when I went there to check them, it just said "Report to follow" and still says that to this day. ARUP had to end up mailing (postal mailing) the results directly to my Doctor's office since Quest couldn't figure out how to show them in their electronic system. So it took a while, but I did get the results and they confirmed the tests were performed by ARUP labs.

Things I tried before Quest that did not work:
1. AnyLabTestNow: They were really confused by the request and said the best they could do is take the blood and I'd have to figure out how to get it to the lab properly myself.
2. I tried calling ARUP labs and seeing who had access to their electronic system and could order the test in a direct way. I got a list of hospitals in my area. I tried calling the hospitals and they said they would only do those labs for inpatients.

I didn't even mess with trying to do it with Labcorp because I've found them pretty horrible to work with in the past anyway.

Solid!

I will say, I think the only reason I was able to get it done through AnyLabTestNow was because I'd previously established a relationship with the one closest to me. In hindsight, I doubt it would have worked if I tried to get ARUP labs done through ALTN during my first visit.

I'm going to use some of these steps you mention though in the future... preesh!

 

[vision blue]

In his Invest in ME London presentations, and various other conference presentations, see here: Dr Chia, Symposium on Viruses in CFS 2008, timecode 10:34

Here Dr Chia explains how he calibrated the ARUP lab enterovirus antibody neutralization tests for use in ME/CFS viral infection diagnosis. The slide you see in that video is detailed further in this post.

There various Invest in ME London videos by Dr Chia are very informative for learning all about enterovirus in ME/CFS. There's a list of these videos on Dr Chia's MEpedia page.

For a deeper understanding of chronic enterovirus infections, see Prof Nora Chapman's Invest in ME London videos.

(But we are taking this thread off topic somewhat, as this thread is mainly focused on the significant difficulties in getting ARUP Lab tests).

Actually, the topic of this thread is interpreting the result of the coxsackie virus tests, so the concern i raised (that the claims about virus test results in CFS vs non-CFS folk may not hold up to real scientific scutiny) is quite on-topic.

Thanks for the additional info but alas conference presentations, synposia, and videos are not a substitute for peer review journal articles in legit (non predatory) journals. When the latter don't exist on some extraordnary claim, that's a red flag. So his claim on the virus test results remain suspect. It's too bad.

 

[Hip]

When the latter don't exist on some extraordnary claim, that's a red flag.

There's plenty of published evidence for chronic enterovirus infections in ME/CFS patients, including via enterovirus VP1 tests, PCR tests, dsRNA tests, and antibody tests. If you are interested, start a new thread I will post some links to studies. Anyone whose researched viruses in ME/CFS will know all about this. Most of the posts in this thread are mainly about the difficulties of getting ARUP tests, so I don't want to answer here, because this is a very important thread for people trying to get ARUP testing organized.

 

[vision blue]

There's plenty of published evidence for chronic enterovirus infections in ME/CFS patients, including via enterovirus VP1 tests, PCR tests, dsRNA tests, and antibody tests. If you are interested, start a new thread I will post some links to studies. Anyone whose researched viruses in ME/CFS will know all about this. Most of the posts in this thread are mainly about the difficulties of getting ARUP tests, so I don't want to answer here, because this is a very important thread for people trying to get ARUP testing organized.

The thread is not on ARUP altho you and others have taken it in that direction

IPkease note that have not asked you for links or elaborations nor for you to do any work. . I asked one simple question which is a key one in matters of test interpretation, the topic of this thread, namely if you (or anyone on this list ) has and can post the numbers on the claim posted that ME folk and non ME folk have different titers and the like. (And then subsequently if these number differences have been legitimately published)

I think the answer to my question is simply “no sorry I dont; if you find that out please post the numbers and citation here”

 

[sometexan84]

The thread is not on ARUP altho you and others have taken it in that direction

IPkease note that have not asked you for links or elaborations nor for you to do any work. . I asked one simple question which is a key one in matters of test interpretation, the topic of this thread, namely if you (or anyone on this list ) has and can post the numbers on the claim posted that ME folk and non ME folk have different titers and the like. (And then subsequently if these number differences have been legitimately published)

I think the answer to my question is simply “no sorry I dont; if you find that out please post the numbers and citation here”

Hmm, I'm just now noticing that. You're right... topic is the CVB titers. My bad!

 

[vision blue]

The one number I know of is chia says 80 percent of cfs folk on stomach biopsy test positive for the virus compared to 20 percent of non-cfs folk, but not sure yet if he has convincing data to back that up. Thats way too BIG a difference to be realistic.

 

[Hip]

The thread is not on ARUP altho you and others have taken it in that direction

People have told me they find this thread invaluable for organizing ARUP Lab tests, which is a very difficult thing to do, because LabCorp and Quest always screw things up. So the information here is important to ME/CFS patients wanting to get tested by ARUP Lab, and I often direct patients here when they ask me how to get the ARUP tests. This thread may have started on a different topic, but it ended up focusing on the fraught difficulties of LabCorp and Quest ordering of ARUP tests.

I have now asked the mod team to consider moving posts which are not about ARUP to another thread, for the benefit of patients who need to get ARUP tests. Alternatively, the mod team can consider moving the ARUP posts to a different thread, since the ARUP ordering information here is important to maintain.

 

[vision blue]

People have told me they find this thread invaluable for organizing ARUP Lab tests, which is a very difficult thing to do, because LabCorp and Quest always screw things up. So the information here is important to ME/CFS patients wanting to get tested by ARUP Lab, and I often direct patients here when they ask me how to get the ARUP tests. This thread may have started on a different topic, but it ended up focusing on the fraught difficulties of LabCorp and Quest ordering of ARUP tests.

I have now asked the mod team to consider moving posts which are not about ARUP to another thread, for the benefit of patients who need to get ARUP tests. Alternatively, the mod team can consider moving the ARUP posts to a different thread, since the ARUP ordering information here is important to maintain.

Since the origins and intent of the thread are about interpreting test results, my vote if moderators are reading this is that it woukd be very confusing if the posts that are ON topic are moved elsewhere!

I still think A simple “interesting question but I dont know”would have would have been an appropriate and swift end to my logical on-topic challenge to a claim in your post Not sure whats going on here.

 

[sometexan84]

Process I used to get ARUP enterovirus (EV) labs done here in the US.

It's a pain to get ARUP's EV labs. I was successful in the past, but those methods stopped working. I finally got the process down, and it should work for anyone in the US if you do it like this.

- You need a doctor willing to help. I told my PCP I was doing this before-hand. Told them I would be paying myself so they wouldn't worry about the financial logistics.

This is very important because ARUP will need a physician to fill out a certain form. Just keep your PCP in the loop and tell them they'll need to fill out a from from ARUP, and then send it to you once it's filled out. You will need this.

- Get authorization/requisition form from ARUP. You need to contact ARUP and tell them what you're doing so they can send this form to your PCP either through email or FAX.

Call the person that helped me, Bruce Collins, 801-583-2787 ext. 2015. If you can't get in touch w/ him, then just call ARUP's regular number and ask to talk to the Corporate Compliance Office. If you try and discuss this w/ a random ARUP employee, you might have trouble.

Bruce was super helpful in getting this done. Basically, tell them the labs you want, that you need that form sent to your doc, and that you'll be paying for this yourself. This way, they'll know to CC you in the email that includes a payment link you can take care of yourself.

- Hire phlebotomist to come to you. You can Google this and easily find a phlebotomist that will come to your house. It's super easy and inexpensive. MUST INCLUDE THE FILLED OUT REQUISTION FORM FROM YOUR PCP.

So, call phleb. tell them you're getting these ARUP labs done and that they'll need to send them directly to ARUP. When they come to you, show them the webpages on ARUP's website w/ the enterovirus lab info (names of labs, ARUPs ID numbers for those labs, drawing/sampling instruction, etc). They should be able to take it from there.

It's all here...
https://ltd.aruplab.com/Tests/Pub/0060055
https://ltd.aruplab.com/Tests/Pub/0060053

Again, give the phlebotomist your PCP-signed requisition/authorization form. When phleb sends your sample to ARUP, the package MUST include this form.

- Price. I paid $883 for the two lab panels below. However, I think you can talk to their Billing dept and ask about a self-pay discount. I remember someone mentioning this.

Test Names:
Echovirus Antibodies-0060053. Price $445.00
Coxsackie B Virus Antibodies, 0060055. Price $438.00
Total: 883.00

Lmk if you have any problems trying this method!