eljomom Posted January 6, 2012 Report Posted January 6, 2012 Kimballot got me thinking in a post reply to the CANS stuff....about how they don't address the kids who do NOT show a rise in titers with strep. I guess immune deficiency would be a reason a child might not have a rise in titer. But what if they are NOT immune deficient and still don't get a titer rise. Is this possible? Or maybe the rapid was false-positive? Other question from the CANS article....is the NDMA test proposed by these guys the same as the methylation gene people have talked about? Sorry to post 2 topics at once....on a very slow laptop right now, and don't have the patience to post twice...
peglem Posted January 6, 2012 Report Posted January 6, 2012 Kimballot got me thinking in a post reply to the CANS stuff....about how they don't address the kids who do NOT show a rise in titers with strep. I guess immune deficiency would be a reason a child might not have a rise in titer. But what if they are NOT immune deficient and still don't get a titer rise. Is this possible? Or maybe the rapid was false-positive? Other question from the CANS article....is the NDMA test proposed by these guys the same as the methylation gene people have talked about? Sorry to post 2 topics at once....on a very slow laptop right now, and don't have the patience to post twice... I don't think its possible to have a false positive RST. That's just my opinion-the RST checks for antigen(s) specific for strepA. If it signals positive, that antigen is present in the sample. BUT, I think its possible, that the strep maybe disabled by abx and so will not grow out in a lab culture. Also possible that while the strepA antigen(s) are present, actual infection may not have occurred. I think the NDMA test is done through a spinal tap and is a different deal than the methalation thing. But, others here know tons more about both of those tests than I do, so you should probably wait for one of them to come along.
airial95 Posted January 6, 2012 Report Posted January 6, 2012 It IS possible to not have a rise in titres without any immune deficiencies - my son is a walking example. Never has had an elevated titre, even at the time of positive rapid and lab cultures.
trggirl Posted January 6, 2012 Report Posted January 6, 2012 Same here. We had a positive rapid and all the symptoms of strep and titers never did rise. And she did not have immune deficiencies according to bloodwork.
nicklemama Posted January 6, 2012 Report Posted January 6, 2012 DS has never had a rise in titers nor has he had a positive culture. Dr K told us he's treated over a hundred kids exactly like our DS. DS also has no known immune deficiencies that can be detected by blood testing. Dr T was very thorough and he's been tested twice. His mycoP and EBV titers are also negative. Dr K and Dr T both said its some undetectable(at present time) glitch in his immune system.
bulldog24 Posted January 6, 2012 Report Posted January 6, 2012 My son has no elevated titers at any time. But he is dx by nih
PowPow Posted January 6, 2012 Report Posted January 6, 2012 The nmda test has nothing to do with methylation. it is (usually) a paraneoplastic disease (meaning it comes from a tumor) that prevents the NDMA receptors from taking up glutamate. To be certain- it requires a spinal tap. Read about NMDAR encephalitis- if you are interested. If you are interested in a thorough workup (infectious and methylation) I have a LLMD who did this for us. I can give you her name, if you want.
butterflymom Posted January 7, 2012 Report Posted January 7, 2012 (edited) = Edited October 7, 2015 by tampicc
eljomom Posted January 7, 2012 Author Report Posted January 7, 2012 Yes, but do any of these docs have an explanation as to WHY This happens? No titers rise even when normal immune system?
socalmom Posted January 10, 2012 Report Posted January 10, 2012 I am VERY interested in this thread and what you guys have to say, as my son was positive for strep via rapid test and titers were " normal" as the neurologist and our pediatrician said. Only reason I tested my son for strep is because I found these board when I was frantically searching for a reason my son was ticcing and acting strange suddenly!
bigmighty Posted January 10, 2012 Report Posted January 10, 2012 DS's titer score came back "below the measurable limit for testing" even though labs were drawn just minutes after his quick test popped positive. He is also diagnosed by NIH.
Iowadawn Posted January 10, 2012 Report Posted January 10, 2012 Keep in mind that the titers rise a few weeks after the actual strep infection--ASO first, then Anti-DNase B. The titers could be high at the time of a strep culture or rapid if they didn't get a chance to recede following earlier infections. Dawn
dcmom Posted January 10, 2012 Report Posted January 10, 2012 Please look at the pinned threads above. I am pretty sure Buster pinned the study, that shows that a pretty large percentage (2- -30% ?) of the general population do not mount high titers to strep, even after known infection. These titers are actually a response to the toxins of strep, not the strep itself. I do not believe there has been any correlation made, negatively, about people that don't make high titers. Both of my kids had culture positive strep, with no titer rise. We have opted not to track titers, as for us, they are meaningless.
airial95 Posted January 10, 2012 Report Posted January 10, 2012 I've had our doctors quote a similar number to Buster (27% is what sticks in my head). No one has given me a really good reason. The immunologist mentioned that the titres don't really tell us much relating to PANDAS-specifically because it just means the body is mounting a response to an infection, and they're not always present anyway. The issue isn't whether or not the body is creating the antibodies to strep, its that the antibodies it IS creating are defective in some way, and there's no blood test for that at present. (She did mention that titres are helpful in cases where throat cultures came up negative, and this was a very simplified explination to my question about my son's maddeningly normal immune results and seemingly healthy immune system but 8 positive strep cultures in less than 18 months) Our pediatrician (just yesterday actually) hypothesized that just because they don't rise above the "normal" thresholds doesn't mean that they're not elevated. The "baseline" titres for our kids (when there's no strep issues at all) just may be very low - and they may increase significantly during times of infection - but not above that marker. But since no one thinks to pull strep titres when you're healthy - very few people have a really good "baseline" number to see if there is an elevation below the threshold. Not sure I explained that well - but we were just chatting yesterday when I had my son in for a throat culture (positive!) because of a backslide since his near miraculous recovery after his T&A. I'm shopping around for giant a giant bubble to keep him in if anyone is interested!
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