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How much weight should be put in HNK1 (CD57) Panel


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Hi! I normally post on the PANDAS forum as we have a dx for our 8 year old over a year ago and also suspect PANDAS in our 6 year old as well. I had an interesting conversation with another PANDAS mom this morning and we I was looking over my sons old labs from the Summer of 2009 when we first got the dx. Her and I were talking about testing for other bacterial infections and viral infections since we continue to see symptoms even after a year of abx prophylactics and 4 IVIG's. We saw him improve with the IVIG's but I don't think we are on the right abx so we are trying to get that changed soon. Anyway I am regressing, I mentioned to her that my boys did do the HNK1 (CD57) Panel and she said that could be a marker for Lyme and could indicate further testing is needed. Both of my kids scored low and as I look online I see that a low result (older son was 21 and younger son was 32 with the normal range being 60-360) could be indicativeof chronic Lyme Disease. Holy Smoke now I am freaked out!

 

What are your thoughts on my boys results and does it validate pursing further Lyme testing?

 

Thank you in advance for your thoughts or input.

 

Cindy

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Hi! I normally post on the PANDAS forum as we have a dx for our 8 year old over a year ago and also suspect PANDAS in our 6 year old as well. I had an interesting conversation with another PANDAS mom this morning and we I was looking over my sons old labs from the Summer of 2009 when we first got the dx. Her and I were talking about testing for other bacterial infections and viral infections since we continue to see symptoms even after a year of abx prophylactics and 4 IVIG's. We saw him improve with the IVIG's but I don't think we are on the right abx so we are trying to get that changed soon. Anyway I am regressing, I mentioned to her that my boys did do the HNK1 (CD57) Panel and she said that could be a marker for Lyme and could indicate further testing is needed. Both of my kids scored low and as I look online I see that a low result (older son was 21 and younger son was 32 with the normal range being 60-360) could be indicativeof chronic Lyme Disease. Holy Smoke now I am freaked out!

 

What are your thoughts on my boys results and does it validate pursing further Lyme testing?

 

Thank you in advance for your thoughts or input.

 

Cindy

 

Our LLMD says that mycoplasma can also cause a low CD57. There may be other infections too.

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Have your boys ever had lyme testing done? It may be worth it with the low CD57 scores. Not sure what labs to suggest. I'm sure others will post. My son's CD-57 is 100, which is lower than I would like it to be. He is PANDAS with questionable lyme. I wouldn't rule out mycoplasma either as it took my son a VERY long time to show titers for mycoplasma (a year on antibiotics). Dr. T explained it like this--when one thing leaves like strep, another infection often rears its head. It took a year for my son's anti-Dnase B to start coming down, but now his mycoplasma is high (had always been normal before). Interestingly, when our family was checked for mycoplasma about 6 months ago, ALL our titers were high, though my son's were normal. I would suppose he's had mycoplasma all along, just wasn't showing titers.

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My son's CD57 was 24 when we started treatment for 'lyme' and all the other issues listed below.

 

He also tested neg. on Mico several times with another doctor and tests. We took the route of visiting a lyme doctor first, before spending loads of money on testing. My thinking was, it can only possibly help but not hurt too much (psychologically because of all the dr. visits in the past). It was the best choice for us and saved us lots of money (initially anyway). Lyme doctors are not always 'in-network' so costs can be higher. But if it gets your children on a better healing track, then it is more than worth it.

 

You seem to be on the right track. Best wishes.

Edited by JuliaFaith
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I have heard that CD57 is not always considered reliable for children by some LLMD's. However, with your son's results and his lack of response to the abx and IVIG, I think it should be checked out for sure. The only other condition that I've heard of that can cause a low test is HIV.

 

Good luck!

 

Susan

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I have heard that CD57 is not always considered reliable for children by some LLMD's. However, with your son's results and his lack of response to the abx and IVIG, I think it should be checked out for sure. The only other condition that I've heard of that can cause a low test is HIV.

 

Good luck!

 

Susan

 

Yes, I've heard this too. I'm not positive, but I think I remember that the famous pediatric LLMD, Dr. J has said this.

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Thank you all! I really do not suspect Lyme but those numbers concerned me obviously since it is a marker for Lyme...but after reading the information about children and this test, I think my gut is right but better safe than sorry and we will likely test for it along with other virals and bacteria. Thanks so much!

 

I have heard that CD57 is not always considered reliable for children by some LLMD's. However, with your son's results and his lack of response to the abx and IVIG, I think it should be checked out for sure. The only other condition that I've heard of that can cause a low test is HIV.

 

Good luck!

 

Susan

 

Yes, I've heard this too. I'm not positive, but I think I remember that the famous pediatric LLMD, Dr. J has said this.

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