Got lab results - help me with interpretation please

[Markus83]

Maybe it makes sense to open a new thread about Parvo B19 because it seems a bit OT here? I think we should do some research in studies (not just CFS, as we're adressing diagnostics as a whole) and then work through them. If everyone can read through a few studies and can sum them up, so that we can collect as much information as possible, we can balance the work load (it depends on how sick you are, at least I'm able to read through one or two complete papers a day and give a short summary).

I should do some research about parvo anyway, because I have to argue for IVIG at my insurrance. It seems that the NS1 band (even outside the CFS community) is considered a hint for a chronic or more severe infection, as my lab (just a standard lab were all doctors send blood to) stated this, too.

What do you think about the idea to work through (at least the important) studies and sum them up for discussion in a separate thread?

 

[Hip]

Maybe it makes sense to open a new thread about Parvo B19 because it seems a bit OT here?

That might be an idea. I am slow at reading though, not only because of the ME/CFS brain fog, but also I have ADHD (my ADHD was caused by the viral brain infection which triggered my ME/CFS).

The most important thing is knowing how the ME/CFS specialist doctors diagnose chronic active parvovirus B19 infection in actual clinical practice. The fact that both Dr Chia and Dr Montoya use PCR to diagnose chronic active parvovirus B19 suggests that PCR is the way to go.

 

[Markus83]

Kerr et al. found that the CFS patients which tested positive for Parvovirus via PCR had between 10 and 1000 copies per ml blood. Given that my lab here can only detect a viral load > 100 copies /ml blood, I would skip the test, because that makes little sense in my eyes. Maybe I can find a lab with a more sensitive method.

 

[Hip]

Given that my lab here can only detect a viral load > 100 copies /ml blood, I would skip the test, because that makes little sense in my eyes. Maybe I can find a lab with a more sensitive method.

A lab with a more sensitive method would be better. However, if you had a positive result on your lab with the > 100 copies sensitivity, that would definitively tell you that you have an active infection; but if you had a negative result, you would not get any useful information from that, because you could still be positive by a more sensitive PCR.

Here are some European testing labs, in case these are useful (they come from my roadmap document):

The Doctors Laboratory (TDL)
TDL Manchester
Biolab Medical Unit (Biolab tests can be ordered via Dr Myhill's website; Dr Myhill's interpretation fee must be paid)
Dr MyHill's Test Portfolio
Genova Diagnostics

Red Labs (Belgium)
European Laboratory of Nutrients (Netherlands)
IMD Laboratory (Germany)
MDI Laboratory (Germany)

Neuro Lab
Invivo Clinical
YorkTest Laboratories
MELISA Diagnostics Ltd
Pure Health Clinic

Medichecks (sends samples to TDL)
Blue Horizon Medicals (sends to TDL)
Home Blood Testing (sends to Biolab)
Blood Tests London (uses TDL)
Privatebloodtests.com (Nuffield hospitals)
Privatebloodtests.co.uk (Spire hospitals)

If you find any other good labs in Europe, please let me know, as I'd like to put them in the roadmap.

 

[Markus83]

Hip, the problem is that even with the highly sensitive test, most CFS patients tested negative. I'm not sure if this rules out an infection, because 40 % of CFS patients had the NS1 band against 7 % of healthy controls. So I think it's not unlikely that there is some kind of problem with parvo if you have the NS1 band positive (like me) even if PCR is negative.

I could do the PCR here in the standard lab, coverd by the insurance. But it will come back negative most likely and that would be an argument for the insurance against IVIG ("chronic parvo infection ruled out because of negative PCR"). I could pay it on my own, but that would cost about 100 €, this is quite expensive. But if I find a lab which is more sensitive, maybe I'll do the test on my own and then negative results do not matter because the insurance won't get to know them.

 

[Markus83]

A little update: I found a lab in Germany which has a higly sensitive PCR method for detecting Parvo B19 and sent my blood to them (University Tübingen, Molecular Pathology/Cardiopathology). I asked my doc also to order a PCR for Chlamydia pneumoniae. I will give an update when I got the results.

I think you need a doctor and cannot send to the lab on your own (insurance will cover it). As I'm from Germany, I don't know if you can send blood from outside Germany, but I guess it won't be the problem.

 

[Markus83]

Got my results and both PCR, Chlamydia and Parvo, came back negative. But I'll ask the Professor if they really found nothing (= 0 copies) or just a few, which where considered not significant. Because in chronic infections these very small amounts that would otherwise be considered insignificant might matter.

 

[kewia]

@Markus83,
Why you didn't test for Varicella Zoster?
Where did you test the first time, at IMD?
And did you do some antiviral therapy in the meantime?

 

[Markus83]

Where did you test the first time, at IMD??

I took some standard and university labs in my region.

And did you do some antiviral therapy in the meantime?

No, there wasn't really any evidence for viral infections. In the meantime I found out, that my problems are most likely caused by CCI/AAI.