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Getting a CD57

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Posted 10/31/2012 3:21 PM (GMT -5)
I am considering asking my primary to order a CD57 test. I have never had a "proper" one done by the correct lab. So I wanted to find out what lab do you use to get the right numbers so you can interrupt if your Lyme is active. I am actually being sent to an oncologist next week for suspicion of Lymphoma. My primary cannot believe how calm I am about the whole situation. I told him I just don't believe I have it as Lyme is the great imitator and can mimic anything it wants. I will either not have cancer or have both cancer AND Lyme. I think once they really delve into the symptoms they will see that it isn't anything like cancer and I will back at good old fashion Lyme. Don't get me wrong I don't want cancer by any means - it is just amazing to see how fast doctors actually "operate" and get moving when they think you have something like cancer but when you are disabled from Lyme there isn't a care in the world. My mom died of cancer so I am very sensitive to the subject but I feel that it a tradegy the way that the world of Lyme is treated and ignored and I have been shown more care and attention within the past two weeks with the "thought of cancer" than I have been shown within the past six years of having debilitating Lyme disease.

If anyone can help me know what lab I should ask my primary to use to get this test done as just yesterday his quote to me was "I will order whatever test you need" I better use that while I can! Sad but true use the power while you have it. Wish I could say I heard the best way to treat even the thought of this is a PICC line for 6 months :) but I don't think they will fall for that LOL.

Thanks for everyone's help. I pray you are all finding the healing you deserve!
Blessings,
Leah
Posted 10/31/2012 4:50 PM (GMT -5)
The first thing that a regular doctor mentioned to me was Lymphoma also. However, he was not very aggressive in testing for it so I still sometimes worry I may have it.

As for the CD57, it is NOT always low with Lyme. Some people's CD57 does not drop. If it is low, you can use it as supporting evidence for a Lyme diagnosis, but as a stand alone test, it is not diagnostic for Lyme. In other words, no normal doctor is going to see a CD57 as definitive "proof" of Lyme.

From a LLMD's point of view, under 100 is Lyme, under 60 is chronic and under 20 is "severe illness." But this isn't always the case as some people may have a normal number and still be severely ill with Lyme. You can use either labcorp or Igenex as the lab.

I was someone who was "lucky" and got a really low under 20 number lol. It helped to convince me that I was definitely treating the right thing. I also had a CDC positive WB. The test is only about $120 OOP so it's worth it in my opinion.
Posted 10/31/2012 5:06 PM (GMT -5)
I was about to say the same thing as Summer3 - a CD57 isn't always low with a Lyme infection.

I did also want to say how sorry I am that you even have to have this concern on top of all of the Lyme stuff! Hopefully, as you said, you will be back to dealing with good old fashioned Lyme soon! That's more than enough for anyone to deal with!!

Please do be sure to let us know how things go!!
Posted 10/31/2012 7:53 PM (GMT -5)
My CD57 is 13! :( I had mine tested through Igenex for $138. But Labcorp also does it. My LLMD said that he would re-run the test towards the end of my treatment. Like Summer3 mentioned, my doctor said that once I reached 100, I would be on the right track.
Posted 11/1/2012 10:09 AM (GMT -5)
I've always gotten my CD 57 tested through labcorp and my results have always seemed pretty consistent with my condition/progress - no one had ever mentioned to me that it was the kind of test that you have to worry about incorrect results, although of course keep in mind that this test is not the be all and end all of Lyme, just a useful sign post.
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