CD 57+ and NK cells

[cave76]

The theory behind tracking CD57 markers or NK (natural killer cells) cells sounds very plausible and the doctor that proposed tracking them as a way of tracking the progress (or decline) of a Lyme patients had good reason to think it would be valuable.

Here is a very brief summary of the test:

"In order for a testing laboratory to measure the CD57+ NK level, it first measures the percentage of lymphocytes that are CD57+ NK cells. Then an absolute count is calculated by multiplying that percentage by the patient’s total lymphocyte count. The standard normal range for the absolute CD57 NK count is 60 to 360 cells per microliter of blood. This wide range was established based upon test results of hundreds of healthy patients. By these laboratory standards, a test result below 60 cells per microliter would be considered below normal and therefore associated with chronic Lyme disease. However, a recent study of my Austin patients has led me to believe that 100 cells per microliter is a more reliable threshold separating Lyme patients and healthy controls."

The entire article is linked below. Unfortunately it was published in a poor excuse of an informative newletter.

http://www.publichealthalert.org/Articles/gingersavely/everything%20you%20always%20wanted.html

Now that it's clear as mud----- let me go on.

I was one of that doctors first Lyme patients. Naturally, after the test was devised I was tested. At that point in my illness I could barely sit up at his desk for long. I often had to lay my head on my arms at his desk. "Sick as a dog" might describe my state with PROFOUND fatigue added.

So the next month, when I went back, imagine my (and his) surprise when my CD count was right smack dab in the normal range--- something in the 200s. He said I had enough to furnish Cleveland!

I began to read other peoples reports of their CD/NK test. Many people felt it did reflect their 'progress'. But almost as many had the same response as I did: very sick/weak and very normal test range.

Then a friend who also had Lyme but was barely sick with it had an almost zero result---- I think it was 5. I started hearing of others with the same 'anomaly'. Go figure.

Since my insurance would pay for everything I kept taking and retaking it every month. Even when I was in my beautiful remission the numbers stayed the same.

Go figure. My LLMD and I had a very good relationship so I felt free to ask him ----- WTH???
My interpretation (just mine) is that even though that test isn't reliable in the sense it was supposed to be------ science is science. Even negatives are valuable so I hope that somewhere/sometime those 'anomolies' will help.

I know that there will be people responding to this saying that the test show exactly what was going on clinically for them. There are many. I don't dismiss that but I also can't dismiss the many that didn't have a clear cut result from it.

[JackieCalifornia]

I have no say over anything that gets posted here, and you are free to say what you like -- my only concern is that there are many ill, fragile, frightened and confused people coming here who are new to Lyme or still struggling with it, and out of consideration for their frazzled nerves, a gentler approach to presenting opinions and information may be not only kinder, but also more effective.

Perhaps you never went through a 'fragile' stage, and so a more argumentative pose would not have rattled you, but I was very ill and confused and frightened when I got here, and this was a safe place to come to, where people would listen and 'talk' with me gently about their experiences and thoughts.

This site was a blessing for me, a safe place to come to where people understood and helped me deal with Lyme while also not scaring me to death with conspiracy theories.  You are free to say whatever you like, but I ask that you consider not everyone is as hardy as you are.

I occasionally make lightly snarky comments about docs, to make the point that docs are not infallible, and that they do make mistakes, as does all of medicine sometimes -- but I try not to go so far as to undermine all confidence in the medical profession as a bunch of greedy geeks.  

Not all of us are strong enough at any given moment to suddenly have all credibility in medicine torn away.  The endocrine effects of a Lyme infection are not to be discounted, nor the resulting mental and emotional upset.  It's fairly settled that post-partum depression (the 'baby blues') is a real thing driven by hormones changes; I think that's a fair parallel to what Lyme seems to do by messing with brain chemistry.

I'm in no position of authority here ... I'm just a human who found solace in this site when I was very very ill, had lost my job for being too ill to work effectively, and was having trouble taking care of my family.  Let's keep this an emotionally and psychologically safe place for others who are suffering too.  

I don't say this in public here to try to embarrass or shame you.  I do so because it's important for our fragile readers to understand that there are different ways to approach Lyme -- some of us swashbuckle because we have the energy to do so, some of us not.  Shouting at a spooked horse does not gentle it.

Thank you.

[cave76]

I'm sorry that telling my experience with the CD57 test (and my thoughts about it) was considered trashing. And if I worded it in such a way that could be considered trashing by some, I'm sorry. Let me be clear----- at no point was I belittling the test or how useful some doctors might find it.

Here's what I said (and still think) which mirrors exactly what Jackie said, in a slightly different way:

"My interpretation (just mine) is that even though that test isn't reliable in the sense it was supposed to be------ science is science. Even negatives are valuable so I hope that somewhere/sometime those 'anomalies' will help."

That's a different way of saying  'Natural killer cells are data, not a final answer.  The more data points a doc has, the better." Jackie's statement was more precise/clearer? than mine was---- but they're still the same.

The facts remain (and they're only data points)----- many people who are horribly sick have CD/NK tests that are normal.
Many people who have almost no symptoms have CD/NK tests that are close to zero. And remain that way.

That's the 'take-away point' I hoped to make. Evidently I failed.

[mojogal]

Agree with Jackie

[JackieCalifornia]

I know who the author of the piece you quote works with.  Very reputable medical people.

Natural killer cells are data, not a final answer.  The more data points a doc has, the better.  My doc used it, and it was helpful to him to see the whole picture.

Please don't be trashing testing that you simply disagree with.  If Lyme testing were as simple as a pregnancy test, we'd all be down at the drugstore buying a little test kit to take home to see if we get a + or a  -.

And if it were all that easy, we would all be well and not spending time on this website.  Seriously.

[cave76]

"anomolies" !!!!!  

Seriously??? LOL

[cave76]

I'm not doubting it's accurate for you. You're one of many.

[mojogal]

I first learned about the CD-57 from Dr Burrascano 's writing. Most people in the Lyme world follow him with great respect.

As for me, it has been a very accurate test. I am a 6 and I am very ill.