by Ephedra, Jun 25, 2013
All of my labs are normal except for this CD57 test, which clocked in at a 5.  Is this diagnostic for chronic Lyme, or are there other potential causes for a low CD57?    
Member Comments (39)
by mojogal, Jun 26, 2013
The CD 57 is a tool for Lyme. Yours is as low as mine. Recently, a great article was written on this test and how accurate it is by Dr B. if you google it, that article should come up.
Sorry but at least you know and can start long term abx (antibiotic) treatment.
by cave76, Jun 26, 2013
My CD57 was in the very much normal range. I was sicker than a dog.
A friend's CD57 was almost zero and felt fine except for a few minor symptoms.

The same thing has shown up for many others.

It can't be used as a 'direct' predictor for Lyme but will perhaps turn out to be a useful set of data in the future.

"One thing that probably needs to be said is that these tests, while they may be useful in supporting or adding another layer of data to the picture of immune dysfunction, are not definitively diagnostic of anything.

The tests listed above may or may not be useful to the patient and the ordering physician in looking into other areas of supportive treatment. If one's insurance carrier or Medicare pays, great. If not, the patient has to decide whether having the panel done is going to be interesting or useful enough (for example, in helping to support their claim of being too sick to work; in finding out about or tracking NK cell counts, etc.) to pay for the testing themselves.

If money is tight, as it is for most of us, then, since this is not a diagnostic test panel, don't have it done if what you are looking for is a diagnosis or confirmation of a different diagnostic test."

Another thread here shows a member who has the same feeling about the CD57.

All the Lyme forums will show the same----- many who feel it shows the status of their disease because the numbers actually matched how they were feeling and many who feel just the opposite.

It's almost like a coin toss.

@ephedra---- the low CD57 won't be data that any doctor will use ALONE as diagnostic and a reason to start abx. You'll need a lab test that show positive---- antibodies, pcr etc.

Please don't take just my word for this. Here are just a few comments from other sources:

Dr. S said at the ILADS 2010 Conference

" CD57 may be affected by Borrelia, Chlamydia pneumoniae, and Tuberculosis"

"CD57 can tell us the quantity of the cells but the issue may be the quality or whether or not the cells can function optimally."

Dr B. said--- same conference:

"CD57 suppression may occur in XMRV as well as in Borrelia. (Editor's Note: There was also talk at this event of Chlamydia pneumoniae causing CD57 depression as well as a discussion of CD57 going down when one is in the midst of a Herxheimer or die-off reaction. Thus, it seems that CD57 may not be as specific for Borrelia as may have been previously believed."

from LymeMD--- a doctor who writes a blog that many people here follow and respect----

"...I have been ordering this test for years. Thousands. Unfortunately, I am left with the conclusion that it has been of very little help to my patients. I have seen no correlation between CD57 and disease activity. Patients in clinical remission may have very low levels and patients with end stage tertiary Lyme disease may have very high levels. Individual immune responses are difficult to predict.

Dr. B has suggested that the CD57 test might be an inexpensive way to screen for Lyme disease. I do not agree. Physicians may order CD57 levels because they are looking for evidence to support the diagnosis. I do not think this approach will not hold up to careful scrutiny. Many patients unfortunately are getting the awful 13 band test performed at "mill labs."Patients don't want to spend the money to get a decent Lyme test.... my opinion and experience, this marker has not been clinically useful."
by mojogal, Jun 26, 2013
Sorry, but I disagree. The father of Lyme, Burascano just wrote a big article on it. In the majority of cases he says it is accurate. He says also do C4a.
In my case and everyone else I know with Lyme, its been a good predictor.
That doesn't mean there aren't exceptions to every rule but overall, it is a good test.
by cave76, Jun 26, 2013
"Sorry, but I disagree."

That's your prerogative. :)
by Ephedra, Jun 26, 2013
Thanks cave76 and mojogal :)

I had a negative LabCorp western blot, but we all know that's less than perfect.  I'm glad something showed, so at least there will be some looking into.  I'm sure different Drs believe different things too.  I just think there is more to this!  I began oral antibiotics right before the test, just to see how I'd respond....  Well, I can't say I feel any different.  I know the IGenex would probably be the best, but I don't necessarily want a false positive either.  It seems everyone test positive through them, doesn't it?

I had a sed rate that registered at 2 mm/hr.  It's within normal range, but does this seem a little odd?    
by cave76, Jun 26, 2013
" It seems everyone test positive through them, doesn't it?"

Not at all! I'm not sure where you got that information but it's wrong. :) It might have been a CDC or IDSA site that was blowing smoke about how 'bad Igenex is. I never received a positive WB for Lyme through Igenex, just IND or neg.

"I had a sed rate that registered at 2 mm/hr.  It's within normal range, but does this seem a little odd? "

Nope---- although the sed rate is supposed to measure inflammation my sed rate was always normal. Not just me---- many other. Those that did get a sed rate out of range were 'lucky' since then a doctor might take them seriously.  
by mojogal, Jun 26, 2013
No, I have never heard of a false positive with IgeneX. I had a false negative with my first Babesia test there..

Several months later it came back positive. Luckily my LLMD and many that I have heard about will treat based on symptoms because it sometimes does takes time to sometimes get a positive result. It took my friend 6 tries to get a positive.

The sed rate sounds kind of low but not being medically trained, I can't really say much except from my own experience. By the time I got very sick, most all my blood tests including sed rate were in the abnormal range.
by wonko, Jun 26, 2013

I was a case where my CD57 value before treatment was in the normal range (around 150, I don't recall the units but I believe them to be consistent with the values others are reporting here.)

After a couple of years of treatment, and measurable gains in how I felt, my CD57 was dramatically lower, in the mid 30's.  

My LLMD said that in some cases it was useful for tracking progress with treatment, but not in all.

I also had a negative (by CDC standards) western blot through Igenex.

Finally, my sed rate was measured to be high on several occasions, I think up in to the 40's and 50's (mm/hr).  My c-reactive protein, another inflammation marker, also often tested high.

So, I had good CD57, a negative western blot through Igenex, and an out-of-range high SED rate.  My diagnosis of Lyme and Bart. was made mostly on clinical evidence, and I greatly improved with antibiotic treatment.

In the same vein as some other recent posts here, I can say that I've never been 100% convinced of what was making me sick, but it best fits Lyme and co-infections.  My LLMD used to tell me that he uses "Lyme" to encompass a number of conditions, and I tend to agree with that perspective since it seems no two cases are the same.

As with any decision, deciding whether or not to pursue antibiotic treatment with an LLMD can be approached with a risk/benefit analysis.  In my case, despite the lack of firm test results or even my own belief that I had Lyme, taking oral antibiotics was low risk.   The potential benefit of treating and curing my condition was of course all positive.  No other doctors with whom I consulted offered any treatment beyond some symptom control.  Also weighing in for me was that my illness took hold in my late 20's, so getting sick was also jeopardizing my hopes and goals for a career.  So for me, pursuing treatment for Lyme came out as an easy choice to make, even though a concrete diagnosis escaped me.

Your mileage may vary, but pursuing Lyme treatment with an LLMD, despite a lack of firm tests, helped me to recover from an illness that no other doctor could diagnose or treat.
by cave76, Jun 26, 2013
I believe that ephedra said :
" I don't necessarily want a false positive either.  It seems everyone test positive through them, doesn't it?"

That's not clear if she was asking if 'everyone got a 'false positive' because of the wording. I guess only ephedra can clear that up.

And Wonko has kindly told us that, in her case, the CD57 numbers didn't match up with how she felt. But she also said that other people's values do match up with how they feel/progress.

Which is what I said------ it's a coin toss. And if it isn't "almost" always correct (for what test is ever 100% correct?) then a blanket statement can't be made for it's value. That's my take on it.

Again what I said----- the data being gathered for those tests may provide us with valuable information in the future.