Input on Antibody Results

[Swim15]

So I know this is sort of the most high level overview testing but just wanted to get some thoughts on these blood draw antibody levels.

I don’t think it’s particularly worth trying to do in depth testing for enteroviruses at this point because it doesn’t look like the Coxsackie virus is high enough to be the source of problems although obviously not definitive.

Treatment for enteroviruses is so hard that I’m more so relying on my CFS being caused by EBV and/or HSV since mono is the only one I’ve ever had symptoms of and there are antivirals that cover both.

General thoughts?

 

[Hip]

Your enterovirus antibody tests may not be valid in the context of ME/CFS:

To reliably detect chronic enterovirus infections in ME/CFS patients, it is only antibody tests using the gold-standard neutralization method that are sensitive enough, according to Dr John Chia, an expert on enterovirus ME/CFS.

Antibody tests using the CFT method are too insensitive to detect chronic infection, he says. And antibody testing methods such as ELISA and IFA, although more sensitive than CFT, may not be sensitive enough. The CFT, ELISA and IFA methods are fine for acute infections, where there is lots of virus present; but to detect chronic low-level enterovirus infections, Dr Chia found you need to use the neutralization method.

In his enterovirus testing recommendations, Dr Chia suggests using the ARUP Lab micro-neutralization antibody tests for coxsackievirus B and echovirus. See this ME/CFS roadmap for more info on these tests.

Dr Chia says complement fixation testing (CFT or CF) antibody assays are worthless for detecting chronic enterovirus:

The typical antibody that the laboratory would do is called the complement fixation test, which is neither sensitive nor specific. That means if you get a positive test, it's worthless. And if you get a negative test, it's worthless. Well that's wonderful.

— Invest in ME Conference 2009, timecode 27:54

Dr Chia explains how he calibrated the ARUP Lab enterovirus antibody tests for use in ME/CFS in the Symposium on Viruses in CFS 2008, timecode 10:34.



Labs which offer antibody neutralization tests include:

• ARUP Lab in Utah: antibody neutralization tests for coxsackievirus B and echovirus, costing $440 each.

• Cambridge Biomedical in Boston (now owned by BioAgilytix): echovirus antibody neutralization test, costing $390.

• Hellenic Pasteur Institute in Greece provide a coxsackievirus B antibody neutralization test for €68.

• IMD Lab in Germany provide individual antibody neutralization tests for CVB3, CVB4, CVB5 and EV6, EV30, costing €34 each. There is an IMD test offering CVB4, CVB5, EV6 and EV30 together (but not CVB3).



Treatments for enterovirus ME/CFS used by Dr Chia include: oxymatrine, Epivir and tenofovir. See the roadmap for more info on these.

 

[Swim15]

Sooo I’m going to assume my post wasnt read as I understand the testing for enteroviruses.

Any thoughts besides the enterovirus portion?

 

[Hip]

Sooo I’m going to assume my post wasnt read as I understand the testing for enteroviruses.

So why did you order the wrong enterovirus tests then? Your test appears to be a complement fixation test, which Dr Chia describes as "worthless" for ME/CFS testing.



I read your post, you said:

it doesn’t look like the Coxsackie virus is high enough to be the source of problems although obviously not definitive.

But the point about an antibody tests not being sensitive enough is that even if you have a chronic enterovirus infection, an insensitive test will not show high antibody levels.

Also, to be accurate, antibody tests have to be calibrated by an ME/CFS doctor. Dr Chia calibrated the ARUP Lab tests (as explained in the link to the video posted above), but tests from other labs have not been calibrated.

 

[Swim15]

So why did you order the wrong enterovirus tests then? Your test appears to be a complement fixation test, which Dr Chia describes as "worthless" for ME/CFS testing.

My doc just threw it on there. It’s kind of a moot point IMO because enteroviruses are the least likely to be treatable so fuck me if that’s what’s causing it. The EBV or HHV6 are much more treatable so I think it’s better worth the time and money to go after those and hope that’s the root until we get better info on CFS determination and treatment in general

 

[Hip]

It’s kind of a moot point IMO because enteroviruses are the least likely to be treatable

The main treatment for enterovirus ME/CFS used by Dr Chia is oxymatrine. This has the virtue of being cheap, available without prescription, and the full benefits appear fast, within about 2 months (if it does work for you).

You have to be lucky for oxymatrine to work for you, but it's very straightforward and cheap to try. So there are useful options open for enterovirus ME/CFS. Tenofovir is another treatment that can be used for enterovirus ME/CFS.

You can even try oxymatrine without getting an enterovirus test (this is what I did, as at the time I could not find a lab that could test me).


For herpesvirus ME/CFS by contrast, it takes a year or so for the the full benefits of antivirals such as Valtrex or Valcyte to appear, and these drugs are costly. And like oxymatrine, you have to be lucky for these antiviral to work for you.

 

[Diwi9]

FWIW @Swim15, I did ARUP Lab testing and my enterovirus exposures were different from serological tests. I improved with oxymatrine during my acute stage and later with Valtrex (took about 3 weeks to notice a difference). Dr. Chia prescribed both, although I commenced oxymatrine before seeing him. It's been over three years and I'm still sick, but in a less severe chronic state. The acute state was much worse. I've come to understand with my illness to learn as much as I can about any underlying issue or potential triggers. Of course the cost of testing is an obstacle.