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Questions about CD-57 NKC test


pollywog
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Hello,

 

I have two children with PANDAS, and am wondering if Lyme could be the root cause. We are about to do the CD-57 NKC test, and am trying to get a better understanding of how diagnostic it is. I know that NKC levels can be altered by infections, other than Lyme (like XMRV, AIDS), so I was wondering if anyone knows why CD-57, in particular, would be low. In other words, what is the connection specifically between Lyme and this particular NKC. On previous tests, my son showed almost non-existent NKC activity, but it wasn't broken down by type of NKC.

 

Also, my son tested negative on the Western Blot. Can I say from that, with confidence, that he does not have Lyme? Can there be false negatives with the Western Blot?

 

We used Low Dose Naltrexone (LDN) to increase our son's NKC count with great success. Does anyone know if there has been success using LDN to improve the immune status from Lyme? Sorry for so many questions.

 

Paula

Edited by pollywog
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Yes you can have false negatives with basic WB. Some kids who are very sick tend to be very low antibody responders. Two of our children are serologicially negative for Lyme (not positive via Igenex WB) because it is congenital Lyme and the body doesn't even recognize bacteria as foreign. We only picked up positive Lyme results in the urine. There are two tests that can be preformed via this method Dot Blot or Urine PCR testing via Igenex. You would need to do proper antibiotic protocol to pursue this type of testing to provoke the infection to die-off and spill into urine.

 

I have heard very, very low NKC activity below can be indicative of a co-infections. I am sorry but I do not remember where I've read this so I can not provide link. BUT, you should be testing for co-infections regardless. A good LLMD would help with all of these issues/understanding.

 

-Wendy

Edited by SF Mom
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I think the CD57 is a nice companion test, but not a be-all end-all. Yes, false negatives with western blot. IGeneX is more expensive and less likely to have false negatives, as their testing is more complete. But still, can happen, particularly if body is just weak and not doing much fighting. I have heard CD57 below 60 implies lyme and mycoplasma pneumonia. Some docs think for kids, low CD57 is not meaningful either way, as they supposedly don't start really making those killer cells until age 13-15.

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Don't know if this counts as a "reference", not too much to go on, but, during the ILADS conference in 2010, during the Q&A following one of the talks, Dr. J. of CT, who works with lots of kids, chimed in and added that, in his opinion, the CD57 is no good for young children as regular healthy kids don't start making the NK cells measured by the test until about age 13-15.

 

Then, some docs use it.

 

All I've ever seen is some docs use it for kids, some docs say it's no good for kids. Not really much to go on, I know.

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I know Dr. S 'the Dr who discovered the test/association' runs it on the children he treats. Our Dr. does not run it on children. Our Dr. stated its a great bench mark for most adults about 90% and for about 10% adults in an inaccurate tool. Always good to do follow-up testing along with CD 57.

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This is just a thought..if it hasn't been discussed yet..

 

if cd57 doesn't start/kick in till 13-15....

that would be the age where some childrens symptoms remit...or ease

so once the cells become "active" i guess...they do thier job and start killing unwanted infections...

 

but just as a second thought/question...

if ds is 11 and his cd57 is 16...wouldn't that still be low...not looking for someone to yes me...but asking...do the NK just kick in one day...or do they build over time?

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This is just a thought..if it hasn't been discussed yet..

 

if cd57 doesn't start/kick in till 13-15....

that would be the age where some childrens symptoms remit...or ease

so once the cells become "active" i guess...they do thier job and start killing unwanted infections...

 

but just as a second thought/question...

if ds is 11 and his cd57 is 16...wouldn't that still be low...not looking for someone to yes me...but asking...do the NK just kick in one day...or do they build over time?

 

 

Good questions for someone who knows, perhaps an LLMD or two could talk about this. Dr. J. who says it's no good for kids, and any who uses them for kids, would be interesting what they would say about, if anyone has occasion to ask...

 

Interesting thought regarding is that when symptoms remit at a certain age. I haven't heard that for lyme at all, it certainly didn't happen that way for me. But, that has been reported in Tourette's, and, I believe, also PANDAS. Regarding the Tourette's, some have tried to tie it to the bones completing growth or catching up with each other, so to speak.

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