Who has had their CD57 tested?

[Cheesus]

Hi Folks,

I am seeing a functional medicine doctor in a few months, and I am trying to get as much NHS testing done beforehand as possible to make it cheaper and to paint a clearer picture at outset. One test that I am considering asking my GP for is a CD57 count.

Have many of you guys had CD57 checked out?
If so, what was it?
If it was low, were you later diagnosed with Lyme?

Thanks!

 

[atoska]

I had it checked and it was 68. I was diagnosed with lyme after a positive Igenex and infectolab test. Now treating with IV abx!

 

[Sushi]

Hi Folks,

I am seeing a functional medicine doctor in a few months, and I am trying to get as much NHS testing done beforehand as possible to make it cheaper and to paint a clearer picture at outset. One test that I am considering asking my GP for is a CD57 count.

Have many of you guys had CD57 checked out?
If so, what was it?
If it was low, were you later diagnosed with Lyme?

Thanks!

I had it checked and it was the low end of normal. I was later diagnosed with Bartonella through PCR.

I think CD 57 is a pointer toward Lyme and co-infections, not not a "clincher."

Sushi

 

[Cheesus]

Thanks for your responses

Yeah that's what I was thinking, @Sushi. I want it testing just so my functional MD has more to go on when I go to see her (she is 100 miles away and is very expensive so it is a special trip). If it is low I would expect her to order Igenex or, possibly, a new test I just heard about on Chris Kresser's podcast whereby they culture the blood.

Bartonella is a co-infection and not actually Lyme, right?

 

[Sushi]

Thanks for your responses

Yeah that's what I was thinking, @Sushi. I want it testing just so my functional MD has more to go on when I go to see her (she is 100 miles away and is very expensive so it is a special trip). If it is low I would expect her to order Igenex or, possibly, a new test I just heard about on Chris Kresser's podcast whereby they culture the blood.

Bartonella is a co-infection and not actually Lyme, right?

Yes, Bartonella is a co-infection though those you have it, very often also have Borrelia (Lyme).

There are many ways to try to check for Lyme and none of them are fully accurate: antibodies, PCR, culturing and the LTT test from Infectolab--to name the most common ones. Here is a quick definition of PCR--the test that found Bartonella in me:

The polymerase chain reaction (PCR) is a biochemical technology in molecular biology used to amplify a single or a few copies of a piece of DNA across several orders of magnitude, generating thousands to millions of copies of a particular DNA sequence.

http://en.wikipedia.org/wiki/Polymerase_chain_reaction

Sushi

 

[Cheesus]

Very interesting. The doctor I am seeing is the only functional medicine MD in Northern England who specialises in fatigue. She has 30 years medical experience under her belt and 16 years in functional medicine, so I think the best bet for me is to just put myself in her hands and let her guide me on this. I'll go around the bend trying to sift through it all myself.

EDIT: Though I will quiz her about all the different tests so that I can be confident of her diagnoses and treatments!

 

[ukxmrv]

I've not been able to get a CD57 count or any similar tets through the NHS. Had some correspondence with my PCT in Westminster and they say that this is not available through any of the London Hospitals that they have contracts with. One of the HIV /Aids clinics does a CD54 count but they will not allow this for non-HIV patients.

 

[vamah]

I had a low cd57, but tested negative for lyme (through igenx). I was positive for hhv6, which I think can also impact cd57.

 

[Thinktank]

First two rounds of testing pre-IV and oral abx showed borderline low CD57 (63), positive antigen on LTT and a medium positive IgG ELISA for borrelia burgdorferi. Those results combined with results from the inflammatory cytokine panel and other immune markers made my LLMD dianose me with (neuro)lyme. I've just one more day to go on the IV abx, then switch to oral abx and retest labvalues within a month.
My LLMD believes i have multiple infections but they didn't show up because my immune system is so messed up.
Mold infections seem to have an impact on CD57 as well.

 

[JT1024]

I had a CD57 done over a year ago by Labcorp in the US. My results (149) didn't seem of much significance to me or the doctor that ordered it.

Other testing was of more interest. He recommended I see an LLMD over a year ago. I had IGenex testing done as well as quite a bit of other testing. While my Lyme was CDC negative, there were 3 bands specific to Lyme. I also tested positive for antibodies to Babesia and Anaplasmosis. My dog tested positive for Anaplasmosis as well. So far.. no treatment for the Babesia or Anaplasmosis. My primary care doc did prescribe 28 days of Doxycycline when he saw my Lyme testing.

I had an appointment to go see an LLMD doctor when my brother became very ill and died. Needless to say, I had to cancel all my appointments. I have an appointment with another physician that takes insurance (in August) but I am on a waiting list. Most of my doctors do not agree with ILADS.. Most follow IDSA. As a result, I've been seeing neurologists, rheumatologists, and and orthopedic doc, in addition to my primary care doc who is also board certified in infectious diseases. Recent symptoms, bilateral in nature, go along with Lyme but I'm having to follow treatments common for neurologic/arthritic at this time. Of course they want to shoot me up with cortisone shots.

Very frustrated and tired.

@Thinktank... interesting about the inflammatory cytokine panels. What immune markers were you tested for?

To tired to proceed. Good luck! ~ JT

 

[Cheesus]

So it seems CD57 can be all over the place relative to Lyme!

@ukxmrv If you can't get it done in London I would be very surprised if I could get it done in Durham, then Have you tried asking the NHS for testing of co-infections? I'm also planning on attempting to get T3 and T4 tested and red blood cell magnesium. I have no idea if the NHS does the latter.

 

[ukxmrv]

I've asked the NHS for various types of tests for many . Started in the late 1980's with their VP1 test for Entroviruses (now withdrawn I think). I've had lots of tests through the NHS, however, they have been of doubtful validity (such as their Lyme test).

The UK NHS do very little testing of commonly found co-infections in CFS, largely don't recognise that bacterial or viral infections commonly found in CFS could be chronic and contributing to the disease or offer testing of the immune system that are available abroad or found in published research in CFS.

Most of my tests have been private. The NHS largely do not recognise that my private tests are valid or relevant to CFS or ME.

My magnesium tests were private and I don't know if the NHS can offer this now. It was in the 1990's. The NHS refused to supplement magnesium based on them.

 

[Thinktank]

@JT1024,

Cytokine panel:
IL-10s
IL-12p70s
IL-1betas
IL-6s
IL-8s
MCP1
MIP-BETAs
Tgf-BETA1s
TNFs

Other immune markers and related markers tested:

C3a
C4a
CD56 NK
CD57
Elastase expression
Perforin mRNA expression
Prostaglandine E2
Macrophage activity

IL-2 / IL-4 (Th1 / Th2 ratio)
IFNg / IL-4 (Th1 / Th2 ratio)

Also immunophenotyping, would be too much to write it all up but it includes T cells, B cells and NK cells

 

[JT1024]

I also had C3a and C4a. My C4a was over 35,000.... That was when the functional medicine physician wanted me to see the Lyme doc. I'm still waiting to see her.

Until the costs for the cytokine/immune profiles become more reasonable, I doubt we'll see routine testing performed unless it is associated with some sort of research.

Like many analytes, cytokines and other immune markers only capture a point in time. A good example would be a glucose level. Glucose levels vary constantly. Physicians wanting to see how a patient's glucose is in control over time will use different tests (e.g. Glycohemoglobin aka hemoglobin A1C).

Our pro-inflammatory cytokines will most likely be high when we are in a flare. Further research is needed. Hopefully, Dr. Montoya and Jarred Younger, PhD from Stanford will continue their research in this area!