CD57?

[Ephedra]

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?    

[cave76]

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.

[wonko]

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.

[mojogal]

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.

[cave76]

" 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.  

[Ephedra]

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?    

[cave76]

"Sorry, but I disagree."

That's your prerogative. :)