• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Seeing an Immunlogist on Friday...what tests?

cfsme23

Senior Member
Messages
129
Location
England
Hi All

Am seeing an Immunologist on Friday in London, I have a few ideas as to what battery of tests I should have as an initial ME/CFS profile (see below), but can anybody think of any additional ones to ask/plead for? Bearing in mind this is the UK, so we may not be able to go too exotic with the bloods, thanks ever so much :)

Natural Killer Cell Function Assay
HHV6 IgG & IgM
EBV VCA IgG & IgM
EBV EA (r+d) IgG
EBNA Ab IgG
HSV 1/2 IgG & IgM
CMV IgG & IgM
Parvovirus B19 IgG & IgM
VZV IgG & IgM
Mycoplasma pneumoniae IgG & IgM
Chlamydia pneumoniae IgG & IgM
Lymphocyte Subset Panel
IgG subclasses
CBC w/diff
Vitamin D, 25-hydroxy
ASO
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
You would want Vit D 1,25 too, and I'd think inflammatory cytokines would be useful. My doc tests sCD 14, C4a and some other things that I could pass on if you think you could get them

Best wishes,
Sushi
 

SOC

Senior Member
Messages
7,849
You might also want to consider CD8+ and CD4+ cell numbers. Sometimes ME/CFS immune abnormalities show up there rather than (or in addition to) in NK cell function. I second Sushi's suggestion that you also have your immunologist look at inflammatory cytokines.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Hi All

Am seeing an Immunologist on Friday in London, I have a few ideas as to what battery of tests I should have as an initial ME/CFS profile (see below), but can anybody think of any additional ones to ask/plead for? Bearing in mind this is the UK, so we may not be able to go too exotic with the bloods, thanks ever so much :)

Natural Killer Cell Function Assay
HHV6 IgG & IgM
EBV VCA IgG & IgM
EBV EA (r+d) IgG
EBNA Ab IgG
HSV 1/2 IgG & IgM
CMV IgG & IgM
Parvovirus B19 IgG & IgM
VZV IgG & IgM
Mycoplasma pneumoniae IgG & IgM
Chlamydia pneumoniae IgG & IgM
Lymphocyte Subset Panel
IgG subclasses
CBC w/diff
Vitamin D, 25-hydroxy
ASO

Hey Scavo86 - In your list of test you have the EBV EA (r+d) IgG. What does the "(r+d)" stand for? I know our test in the States are different from Englands, but I have never seen that and was curious. Thanks
 

cfsme23

Senior Member
Messages
129
Location
England
HI August...I need to take Immunology 101 myself, but I believe them to stand for Early Antigen diffuse (EA-D), and Early Antigen restricted (EA-R). I think they just give a handle on the the infection and how far down the road with it you are/whether it's persistent reactivation. What might also help is the website which is on the sticky in this particular forum which details what all lab tests means exactly. Probably better than relying on me, would you really want to trust a 26 year a trainee lawyer ;) Hope that helps nonetheless.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Make sure the NKC assay is done by flow cytometry. Results should be in lytic units (LU). I'm not sure how widely available this test is.

Most of the other tests will show if you've been exposed to any of those organisms. It's not the same as having an active infection. In my case I show exposure to nearly everything, but the numbers (the amount of antibody) vary over time. The result that was the most obviously abnormal for me was the NKC functional assay.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi Scarvo, are you seeing a NHS or private immunologist? Do you know which hospital the will be using the lab of?

I'm in London and have seen a few myself. If NHS they offer very few useful tests and if private it will vary depending on the lab.

Good luck!