Testing for a coxsakie and enterovirus

[Hoosierfans]

Newbie question: when should your doc be testing you for the above two viruses? I’ve had LOADS of labs over the last 13 years of being ill, but never heard of the above two viruses until I read the ME / CFS guide (which is EXCELLENT).

My current doc is more versed in Lyme and mold / environmental illnesses. He recently ran labs, and the viral ones include EBV (all titers), CMV and HHV 6. But that’s the extent of viral testing.

not sure whether I should insist on testing for coxsakie and / or enterovirus. Any guidance???

Many thanks!

 

[Wolfcub]

My own feeling is to include these two viruses in any testing if possible.

I am going to tag @Hip because he may be able to help and advise you.

 

[Hip]

not sure whether I should insist on testing for coxsakie and / or enterovirus. Any guidance???

Some ME/CFS doctors only look at herpesviruses (EBV, CMV and HHV-6), and ignore enteroviruses (coxsackievirus B and echovirus). But all these viruses have been linked to ME/CFS.

If you plan to get tested for chronic coxsackievirus B and echovirus, note that the only blood tests known to be sensitive enough to detect these are the ARUP Lab micro-neutralization tests in the US. These tests are detailed in the coxsackievirus B and echovirus section of this ME/CFS roadmap document.

 

[EddieB]

not sure whether I should insist on testing for coxsakie and / or enterovirus.

I’m hoping to do this ARUB testing very soon. Seems a bit tricky to get the correct forms.

I highly suspect I have an enterovirus infection in my stomach. My doctor is trying to work with Dr Chia remotely. I did the standard coxsackie lab tests that came back negative. Is that a common finding?

 

[Hip]

I’m hoping to do this ARUB testing very soon. Seems a bit tricky to get the correct forms.

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.

 

[Hoosierfans]

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.

Hip, thanks so much. I have a long history of EBV (it’s what I originally came down with in 2006 and I’ve had several reactivations over the years but no doc has given me antivirals — too focused on mold, Lyme, thyroid, diet etc) and am waiting on an EA test right now.

So I’m wondering if it’s worth it to pursue testing for coxsakie and enterovirus given my history of EBV and (most likely), it’s active / chronic now. Or, do I just go forward w antivirals and then if I’m not responding in several months time go ahead at that time and pursue the other infections.

 

[EddieB]

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).

Thank you Hip, I’ll print all this out and send it to my doctor.

 

[EddieB]

I have a long history of EBV (it’s what I originally came down with in 2006

Hello Hoosierfans,
I have sky high EBV numbers, but never had what is considered an active infection. I want to try and rule out enterovirus before trying EB antivirals. I guess it’s a chicken/egg thing, but I think some of the treatments for entero might also knock out the EBV as well. Happy hunting!

 

[Hoosierfans]

Hello Hoosierfans,
I have sky high EBV numbers, but never had what is considered an active infection. I want to try and rule out enterovirus before trying EB antivirals. I guess it’s a chicken/egg thing, but I think some of the treatments for entero might also knock out the EBV as well. Happy hunting!

Happy hunting to you as well. I def had active mono in 2006....never recovered until docs propped up my system on a cocktail of meds (long story).
Question for you — what are the symptoms of enterovirus and or coxsakie? Are they similar to EBV? Or different? Just wondering why you are chasing down those despite high EBV numbers

 

[Hip]

Hip, thanks so much. I have a long history of EBV (it’s what I originally came down with in 2006 and I’ve had several reactivations over the years but no doc has given me antivirals — too focused on mold, Lyme, thyroid, diet etc) and am waiting on an EA test right now.

So I’m wondering if it’s worth it to pursue testing for coxsakie and enterovirus given my history of EBV and (most likely), it’s active / chronic now. Or, do I just go forward w antivirals and then if I’m not responding in several months time go ahead at that time and pursue the other infections.

There are no hard and fast rules about which tests and treatments to pursue first.

It's quite common for ME/CFS patients to have more than one chronic active infection. So although EBV may have been the trigger, it's possible you have other active infections in addition.

Dr Lerner would test for a range of infections, and treat the patient accordingly. If a patient only has active EBV, then he would prescribe Valtrex. If the patient had active CMV or HHV-6, then he would use Valcyte. Valcyte is antiviral for EBV, CMV and HHV-6, whereas Valtrex works for EBV but not CMV and HHV-6. Lerner would also test for bacterial co-infections, and treat those at the same time as giving antivirals.

Both Valtrex and Valcyte take some time to start showing benefits in ME/CFS patients, around 3 or 4 months for the first improvements to appear (assuming they do work for you), and around a year or more for the full benefits to manifest. So it can take some time (and expense) to figure out if they are working.

Generally you see a lot more success stories in patients trying Valcyte than Valtrex.

I would imagine that if you did also have say an active coxsackievirus B infection alongside an active EBV infection, then Valtrex might not be very effective, because you may have more than one virus at play.

There are not many options if you have active enterovirus; oxymatrine is the mainstay of Dr Chia's enterovirus treatment. This is relatively cheap and available to buy as a supplement.

 

[Hoosierfans]

There are no hard and fast rules about which tests and treatments to pursue first.

It's quite common for ME/CFS patients to have more than one chronic active infection. So although EBV may have been the trigger, it's possible you have other active infections in addition.

Dr Lerner would test for a range of infections, and treat the patient accordingly. If a patient only has active EBV, then he would prescribe Valtrex. If the patient had active CMV or HHV-6, then he would use Valcyte. Valcyte is antiviral for EBV, CMV and HHV-6, whereas Valtrex works for EBV but not CMV and HHV-6. Lerner would also test for bacterial co-infections, and treat those at the same time as giving antivirals.

Both Valtrex and Valcyte take some time to start showing benefits in ME/CFS patients, around 3 or 4 months for the first improvements to appear (assuming they do work for you), and around a year or more for the full benefits to manifest. So it can take some time (and expense) to figure out if they are working.

Generally you see a lot more success stories in patients trying Valcyte than Valtrex.

I would imagine that if you did also have say an active coxsackievirus B infection alongside an active EBV infection, then Valtrex might not be very effective, because you may have more than one virus at play.

There are not many options if you have active enterovirus; oxymatrine is the mainstay of Dr Chia's enterovirus treatment. This is relatively cheap and available to buy as a supplement.

@Hip thank you so much for this. My most recent labs, in addition to the high EBV titers, show HHV-6 for the first time, IGG 1:80. No IGM. I’m not sure if this warrants treating the HHV-6.

Chatting with my doc, he’s much more comfortable using acyclovir b/c of the side effect profile he’s seen in clinical practice. That being said, he’s an open minded guy so if I send him some info I’m sure he would consider having me try Valcyte and / or testing for the other viruses. You’ve been a huge help...thank you so much.

 

[EddieB]

Question for you — what are the symptoms of enterovirus and or coxsakie? Are they similar to EBV? Or different? Just wondering why you are chasing down those despite high EBV numbers

Because so many of my troubles center around digestion. I have terrible reflux and stomach pain that is unexplained, and supposedly enterovirus can cause this. If the enterovirus testing turns up negative, than I may try antivirals for the EBV.

 

[Hip]

@Hip thank you so much for this. My most recent labs, in addition to the high EBV titers, show HHV-6 for the first time, IGG 1:80. No IGM. I’m not sure if this warrants treating the HHV-6.

On your HHV-6 antibody test report, what is the reference range for a negative result? It's usually something like 1:10.

 

[Hoosierfans]

On your HHV-6 antibody test report, what is the reference range for a negative result? It's usually something like 1:10.

Yep its 1:10

 

[Hip]

Yep its 1:10

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.

 

[junkcrap50]

Would it be worth it sending a small bowel biopsy sample to Dr. Chia for enterovirus testing?

I am likely (hoping to) getting a small bowel biopsy for gut related issues (malabsorption, IBS-C, celiac, MCAS). If they're already getting a sample, now's the time to get one for enteroviruses. But I don't really see much of a point. There's not much to do with a positive result, except Equilibrant. And I've done 9 months of max does Equilibrant with no changes.

Dr. Chia's test cost $250. Would that be totally out of pocket? ARUP's neutralization enterovirus antibody testing is ~$300-$600, right? Does insurance cover that?

Just seems like an expensive test just for my own knowledge. If the costs could be lower, then I'd do it.

 

[EddieB]

Would it be worth it sending a small bowel biopsy sample to Dr. Chia for enterovirus testing?

Not sure that anyone going to be able to get to Dr Chia for some time. My PC doctor contacted him several weeks ago, and was told he is not taking anymore new patients. I did finally get my blood tests back from ARUP lab, negative.

 

[junkcrap50]

Not sure that anyone going to be able to get to Dr Chia for some time. My PC doctor contacted him several weeks ago, and was told he is not taking anymore new patients. I did finally get my blood tests back from ARUP lab, negative.

I don't need to see him. Just for him to do the enterovirus testing on the biopsy. I thought only he does those. And that he does do lab testing for patients.

 

[Hip]

If the costs could be lower, then I'd do it.

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. The staff at IMD lab speak English.

Like the ARUP tests, these are sensitive neutralization tests.

 

[EddieB]

I don't need to see him. Just for him to do the enterovirus testing on the biopsy. I thought only he does those. And that he does do lab testing for patients.

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.