Test Results Confusing!

Hi, all. Just overwhelmed and looking for a little help brainstorming.

I became chronically, disablingly ill with Lyme almost four years ago, and the past six months have been the healthiest in that time, with the fewest Lyme symptoms. When I was at my sickest, by blood work was all normal, and my CD57 was 63.

Now, I have crazy immune system activity - eosinophils sky-high, and CD57 only 3. This would not surprise me if I were feeling very ill, but all that has been wrong lately is severe small intestine pain after eating, which is being investigated ... slowly ... by specialists who know nothing about each other's specialties, so I have basically no confidence that they will piece together the puzzle. And still, my Lyme stuff is rare and minimal.

I know CD57 is not a perfect test, but has anyone had a very low result in a low-symptom time period?

Anyone have low CD57 associated with mast cell disease?

My main theory was that I was having serious mast cell issues in my intestine, causing the pain and high eosinophils (they are the white blood cell deployed in reactions to histamine and parasites and IBD, but I have tested negative for parasites multiple times in the past month, and don't have the symptoms or inflammatory markers of IBD). Stool test shows a wonderful, healthy GI tract with no inflammation, all normal except for the crazy high amount of eosinophils. But with this CD57 result, I am feeling confused, as it does not fit my theory, I don't think!

I also had food allergy testing done, but I will not have those results for three more weeks. Anyone seen a correlation between food allergies and low CD57?

Uuuugh why must it be one thing after another?! I was so excited to be feeling better, finally. But a CD57 of 3 is so incredibly low!

I just moved and found a new LLMD. I wasn't thrilled with her, but at my second appointment she told me she's quitting! So currently I have no one to pester with these concerns. Perhaps I will do a session by phone with my old LLMD....

Thanks for your thoughts, everyone....

Hi saraeli, I found this blog post, maybe it will help?

https://lymemd.blogspot.com/2009/01/cd57.html

****** If CD57 responses are low, it may mean that these cells are being consumed by the immune system in the fight against Lyme. If they are high, it may mean that the body is busy cranking out the T cells to assist in the fight against Lyme. ******

****** 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. ******

For posterity, here's a wee update:

My CD57 was not a 3, as my doctor said. I saw the actual results today, and the PERCENTAGE was a 3. Totally different. Doctor fired.

CD57 was 36 with a reference range of 40-500, percentage was 3.0. (Quest)

My last test, two years ago, was a 63 with a reference range of 60-360, percentage was 3.7. (LabCorp)

So it's worse, but it's not terrible!

I have read there are two preferred labs for testing CD57, and neither of these was done at the preferred labs. I also find it really annoying that the reference ranges are different.

Now I can go back to freaking out about my gut eosinophil explosion. ;)