Fixit Posted January 19, 2011 Report Posted January 19, 2011 (edited) Fat fingered it and just lost orignal post...Sorry edited 1/22/11 Edited January 22, 2011 by Fixit
MichaelTampa Posted January 19, 2011 Report Posted January 19, 2011 I've followed your case enough to have the opinion at this point, it looks a lot like lyme to me, but, if it is or isn't, still makes sense to try lyme treatment, see where it goes, yes, it could treat something else and you'd never know. Opinions from docs are all across the board on the CD57, who knows. I know it's really tracked the ups and downs for me, so I see the value in it for people that it works that way with. It's a test I think ideally you would get periodically to help track treatment, or at least see if it can help track treatment, because it can help you decide when to stop. I'd recommend definitely don't do it if you think your doc would withhold treatment based on a "normal" result. But that depends on what you know about where the doc is headed. It's ideal to get it before any treatment starts, because once treatment starts, you won't know how the treatment affected things. But, still, not really critical, for a 10yo, I wouldn't rush him in to get pricked one more time for that, but, maybe, next time you're having blood, have it be LabCorp and get that on the order. With insurance, for me, when done with other tests, it ends up costing like $6.
Fixit Posted January 19, 2011 Author Report Posted January 19, 2011 Thanks Michael, i really appreciate that.
sf_mom Posted January 19, 2011 Report Posted January 19, 2011 There are several that see Dr. S here in SF who discovered the association with CD57. He does use it to track treatment response both in children and adults. It 'might' give you an indication of how sick your son is based on his natural killer cells. -Wendy
Fixit Posted January 19, 2011 Author Report Posted January 19, 2011 (edited) so i guess its good to have a starting point..something to measure. how long does it take to get back? Edited January 19, 2011 by Fixit
MichaelTampa Posted January 21, 2011 Report Posted January 21, 2011 Ignoring delays related to getting the results to the doctor and then to you, the CD57 results are actually really quick--just 2-3 days. The reason is, what is needed for the CD57 deteriorates really quickly, so they must process it right away. For that reason, in some locations, it's bad to have the blood draw on Thursday or Friday, because the blood will be spoiled before they get to running the test.
philamom Posted January 21, 2011 Report Posted January 21, 2011 Ignoring delays related to getting the results to the doctor and then to you, the CD57 results are actually really quick--just 2-3 days. The reason is, what is needed for the CD57 deteriorates really quickly, so they must process it right away. For that reason, in some locations, it's bad to have the blood draw on Thursday or Friday, because the blood will be spoiled before they get to running the test. Arrggh! I just had this done last Friday...haven't received the results. Would it be in my best interest to call the lab to see if the test was performed the same day as the draw?
MichaelTampa Posted January 21, 2011 Report Posted January 21, 2011 If I were you, I think I would be calling to ask if it is complete, and then when the test actually was done on the sample. If you're lucky, the rep will have that info available and maybe you can end up discussing why you're asking, and maybe the rep will be able to see what the time limit on that one is supposed to be.
philamom Posted January 21, 2011 Report Posted January 21, 2011 If I were you, I think I would be calling to ask if it is complete, and then when the test actually was done on the sample. If you're lucky, the rep will have that info available and maybe you can end up discussing why you're asking, and maybe the rep will be able to see what the time limit on that one is supposed to be. Thanks Michael, I think I will. The day of the blood draw, the only 2 workers there had a difficult time figuring out what the test was.
Fixit Posted January 21, 2011 Author Report Posted January 21, 2011 Thanks Michael, I think I will. The day of the blood draw, the only 2 workers there had a difficult time figuring out what the test was. we did ours with ped...they didn;'t have tubes...had to order..they had to send to a different lab? they told her it would take 2 weeks??? i guess i'll be calling mon or tue also
MichaelTampa Posted January 22, 2011 Report Posted January 22, 2011 Yes, CD57 is one that a lot of lab techs have trouble with. It may help to have the "HNK1" code with you, to help them find it. The "NK" in HNK1 stands for natural killer cells, which is what is being measured.
Fixit Posted January 22, 2011 Author Report Posted January 22, 2011 OK..new question about cd57... on the thread about Transfer Factor..it was mentioned that it raises the CD57... What about LDN...does anyone know? the guy i went to for lymes and some here have posted that their lymse doc want them to take it... its anti-inflam..and also immune modulateing would that effect the cd57..could it effect it... of course i want my son healthy...but he has been off and on since last mayish... and on it steadily for the last 3 months or so...thats a long time i could see it effecting something.... cheez...it's just like the time we took the first cunningham test..and score was low...found out a coule months after draw that taurine lowers camkenase.... i went back to look at ds aminos and he was on high taurine for 3 months prior to draw.... second draw...no taurine...ds was horrible, cam was high.. So as i type this...and i heard that lymes can raise cam...i wonder if some the lymes docs should look into taurine. another question...can these medications change the numbers artificially, (like a band aid) or is it doing something to improve the immusne system... i cant' say ldn has any effect for ds...origiannly it made him like a disney(blue bird on the shoulder guy) but that is all i can say.. is it doing other stuff...couldn't tell you.. did the taurine really help his conditon...well things were better at the end of the 3 months..but we were also gfcf...and there was an exercise thing we did like "handle" 3 times aday(like the early autism programs)... but that was not the height of allergy season, like when we did second draw..
Suzan Posted January 23, 2011 Report Posted January 23, 2011 cheez...it's just like the time we took the first cunningham test..and score was low...found out a coule months after draw that taurine lowers camkenase....i went back to look at ds aminos and he was on high taurine for 3 months prior to draw.... second draw...no taurine...ds was horrible, cam was high.. So as i type this...and i heard that lymes can raise cam...i wonder if some the lymes docs should look into taurine. another question...can these medications change the numbers artificially, (like a band aid) or is it doing something to improve the immusne system... i cant' say ldn has any effect for ds...origiannly it made him like a disney(blue bird on the shoulder guy) but that is all i can say.. is it doing other stuff...couldn't tell you.. did the taurine really help his conditon...well things were better at the end of the 3 months..but we were also gfcf...and there was an exercise thing we did like "handle" 3 times aday(like the early autism programs)... but that was not the height of allergy season, like when we did second draw.. My dd8 was the same way, on taurine for her seizures and had a low camK at the onset of an episode (low end of pandas even though obvious strep connection and now positive lyme). I will bring this up with our neurologist when we go (but we are not going until March). He is getting involved in Lyme and very interersted in pandas and pitands. I don't know whether taurine helped us or not either. We were doing so many things at the time. It was all pre-pandas/lyme Susan
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