worriedmommy Posted June 13, 2010 Report Share Posted June 13, 2010 Dr. B ordered a bunch of blood work for dd (6), one of which was a C3D Complement test. We got the results back from the lab late yesterday and her C3D was 57, with the normal range listed as 0-8. I googled this test and see a lot mentioned about autoimmune disorders and inflammation...but I'll be honest that the articles are WAY above my head. Just curious if any of you are familiar with this test and are able to explaing the significance of having a high level? (I know that I'll get my answers next week when I call Dr. B...but the suspense is killing me.) Link to comment Share on other sites More sharing options...
kimballot Posted June 13, 2010 Report Share Posted June 13, 2010 Hi - we had c3d of 55, so similar situation. From what I recall from my conversation with Dr. B it is evidence of an autoimmune response - which can be used as evidence for PANDAS for future treatments. I really do not understand the specifics either. My goal this summer is to learn about the immune system so I can understand this stuff better! After you talk to Dr. B if you could post what you learn it would be great. I know many of us are trying to understand this test - it seems that the PANDAS docs are starting to order this and so far I have seen many kids with on this forum with elevated C3Ds. I am wondering if any of the kids on this forum do NOT have elevated C3Ds. Link to comment Share on other sites More sharing options...
worriedmommy Posted June 13, 2010 Author Report Share Posted June 13, 2010 Hi - we had c3d of 55, so similar situation. From what I recall from my conversation with Dr. B it is evidence of an autoimmune response - which can be used as evidence for PANDAS for future treatments. I really do not understand the specifics either. My goal this summer is to learn about the immune system so I can understand this stuff better! After you talk to Dr. B if you could post what you learn it would be great. I know many of us are trying to understand this test - it seems that the PANDAS docs are starting to order this and so far I have seen many kids with on this forum with elevated C3Ds. I am wondering if any of the kids on this forum do NOT have elevated C3Ds. Yes, I will definitely post what I find out from Dr. B. I would also be interested to know if others on this forum are getting high or normal results. Link to comment Share on other sites More sharing options...
dut Posted June 13, 2010 Report Share Posted June 13, 2010 Hi - we didn't get an elevated c3d.. in fact all our tests come back within normal, with some notable exceptions.. the CamK, and earlier GM1 lysoganglioside and just this week, strep in the gut. Other than those we are firmly within normal for everythign else and we seem to have tested EVERYTHING else..... Link to comment Share on other sites More sharing options...
kimballot Posted June 13, 2010 Report Share Posted June 13, 2010 Hi - we didn't get an elevated c3d.. in fact all our tests come back within normal, with some notable exceptions.. the CamK, and earlier GM1 lysoganglioside and just this week, strep in the gut. Other than those we are firmly within normal for everythign else and we seem to have tested EVERYTHING else..... That is so interesting - high Cam K but not high C3D.... someday we will have names for all these PANDAS patterns and then we will be able to understand everything so much better. I wish there was a researcher taking all of this information on all of our kids and putting into a great big database so it could help us and others in the future! Link to comment Share on other sites More sharing options...
dut Posted June 13, 2010 Report Share Posted June 13, 2010 Yeh, according to our tests my dd is the healthiest girl alive... that's never had anything! our camK wqas 165% out of exacerbations with borderline anti tubulin. She had an elevated GM1 anti lysoganglioside the year before. All her others including CRP, icomprehensive immunological lyme, cat ones, ebv, myco, strep all within normal. We have had positive swabs but only ever for beta hemolytic NOT group A.. so hey.. we got a well child.. oh yeh with the PANDAS exception.... Sounds a bit munchausen, but my heart drops when they come back within normal... still looking for that trigger or reason for this.. we're managing it well but I'd like to see something in her labs we can fight... Link to comment Share on other sites More sharing options...
LNN Posted June 13, 2010 Report Share Posted June 13, 2010 After you talk to Dr. B if you could post what you learn it would be great. I know many of us are trying to understand this test - it seems that the PANDAS docs are starting to order this and so far I have seen many kids with on this forum with elevated C3Ds. I am wondering if any of the kids on this forum do NOT have elevated C3Ds. Yes, I will definitely post what I find out from Dr. B. I would also be interested to know if others on this forum are getting high or normal results. My Pandas son had C3D of 51 (non-exacerbation) and CaM K of 187 (exacerbation). My daughter, who is a Pandas question mark, had C3D of 25 (no CaM K done). I didn't follow the Dr B explanation or the googled articles either, other than it's an indicator of autoimmune response. Dr B did say it explained all those complaints of muscle/joint pain I hear every night at bedtime. Link to comment Share on other sites More sharing options...
kimballot Posted June 13, 2010 Report Share Posted June 13, 2010 yes - I do remember that he told me this was probably the cause of my son's joint pain. It was good to know that it was not all in his head - as we had been thinking, and made me feel better about giving him ibuprofen when he complained of joint pain. Here is a link with a simple explanation of the test - not much info, but I can understand the stuff on here! http://www.answers.com/topic/immune-complex-detection. Link to comment Share on other sites More sharing options...
justinekno Posted June 13, 2010 Report Share Posted June 13, 2010 (edited) In reading the definition, it seems like if you've already had the ANA test done, which I see some people (ourselves included) on this board have had done, then you wouldn't need the C3D test done? Hi - we had c3d of 55, so similar situation. From what I recall from my conversation with Dr. B it is evidence of an autoimmune response - which can be used as evidence for PANDAS for future treatments. I really do not understand the specifics either. My goal this summer is to learn about the immune system so I can understand this stuff better! After you talk to Dr. B if you could post what you learn it would be great. I know many of us are trying to understand this test - it seems that the PANDAS docs are starting to order this and so far I have seen many kids with on this forum with elevated C3Ds. I am wondering if any of the kids on this forum do NOT have elevated C3Ds. Edited June 13, 2010 by justinekno Link to comment Share on other sites More sharing options...
kimballot Posted June 13, 2010 Report Share Posted June 13, 2010 In reading the definition, it seems like if you've already had the ANA test done, which I see some people (ourselves included) on this board have had done, then you wouldn't need the C3D test done? Hi - we had c3d of 55, so similar situation. From what I recall from my conversation with Dr. B it is evidence of an autoimmune response - which can be used as evidence for PANDAS for future treatments. I really do not understand the specifics either. My goal this summer is to learn about the immune system so I can understand this stuff better! After you talk to Dr. B if you could post what you learn it would be great. I know many of us are trying to understand this test - it seems that the PANDAS docs are starting to order this and so far I have seen many kids with on this forum with elevated C3Ds. I am wondering if any of the kids on this forum do NOT have elevated C3Ds. My take on this is that C3D is an accepted test to show a general autoimmune response that can result in deposits in the joints and joint pain. The cause of the response could be rheumatoid arthritis, lupus, or other autoimmune disorders. Once a C3D is elevated then the doc tries to figure out what is causing the elevation. Regarding the ANA (I am assuming you mean Cunniningham's antineuronal antibodies), that would be a specific test to state what the underlying cause of the elevated of C3d is. The problem is that the ANA is still in the research stages, so it is not a diagnostic test - and PANDAS is not an ICD-9 approved diagnosis. So.. with the elevated C3D we can safely say that my son has an "autoimmune disorder", which is a diagnostic classification, and is eligible for insurance intervention and for letters to the school, etc. Also, (interestingly) while my son had an elevated Came Kinase of 156, he ONLY had anti dopamine -1 elevation, and that was only 4,000, which is just one dilution away from the upper limit of 2,000 in the normal subjects.... so there may be more going on than what we see in the ANA. So much to learn!! Link to comment Share on other sites More sharing options...
justinekno Posted June 13, 2010 Report Share Posted June 13, 2010 (edited) delete Edited June 13, 2010 by justinekno Link to comment Share on other sites More sharing options...
justinekno Posted June 13, 2010 Report Share Posted June 13, 2010 The ANA (Antinuclear Antibody test) I was referring to is the one that is a screening test for some autoimmune diseases. I've attached the link but not sure if I did it correctly http://www.labtestsonline.org/understandin...s/ana/test.html My take on this is that C3D is an accepted test to show a general autoimmune response that can result in deposits in the joints and joint pain. The cause of the response could be rheumatoid arthritis, lupus, or other autoimmune disorders. Once a C3D is elevated then the doc tries to figure out what is causing the elevation. Regarding the ANA (I am assuming you mean Cunniningham's antineuronal antibodies), that would be a specific test to state what the underlying cause of the elevated of C3d is. The problem is that the ANA is still in the research stages, so it is not a diagnostic test - and PANDAS is not an ICD-9 approved diagnosis. So.. with the elevated C3D we can safely say that my son has an "autoimmune disorder", which is a diagnostic classification, and is eligible for insurance intervention and for letters to the school, etc. Also, (interestingly) while my son had an elevated Came Kinase of 156, he ONLY had anti dopamine -1 elevation, and that was only 4,000, which is just one dilution away from the upper limit of 2,000 in the normal subjects.... so there may be more going on than what we see in the ANA. So much to learn!! Link to comment Share on other sites More sharing options...
kimballot Posted June 13, 2010 Report Share Posted June 13, 2010 The ANA (Antinuclear Antibody test) I was referring to is the one that is a screening test for some autoimmune diseases. I've attached the link but not sure if I did it correctly http://www.labtestsonline.org/understandin...s/ana/test.html Wow! I never heard of these! So much to learn - we did not have THESE ANA tests, so I really do not not know the difference between this and C3D.... Anyone else know? Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted June 13, 2010 Report Share Posted June 13, 2010 The C3D marker for auto-immune and/or inflammation is used for so many different diseases to track the progress of the illness. Now that we are in the lyme world, the C3D marker is heavily used to monitor the lyme treatment. Dr. Charles Jones recently told another mom on this forum whose daughter had a very high C3D level that that number would go away with the lyme treatment of multiple antibiotics. I am curious as to the direction Dr. K is heading in with the C3D marker. It seems as though not all PANDAS children have elevated numbers. Elizabeth Link to comment Share on other sites More sharing options...
justinekno Posted June 13, 2010 Report Share Posted June 13, 2010 Okay, now I'm really confused! I thought the CD57 was the marker in the Lyme world? Unfortunately, my son and I are both just starting to head down the Lyme path so I recently had the CD57 done for myself. Since the CD57 isn't used for kids, I am intrigued to find out if the C3D can be used in the same manner for kids. My son hasn't had the C3D test done. The C3D marker for auto-immune and/or inflammation is used for so many different diseases to track the progress of the illness. Now that we are in the lyme world, the C3D marker is heavily used to monitor the lyme treatment. Dr. Charles Jones recently told another mom on this forum whose daughter had a very high C3D level that that number would go away with the lyme treatment of multiple antibiotics. I am curious as to the direction Dr. K is heading in with the C3D marker. It seems as though not all PANDAS children have elevated numbers. Elizabeth Link to comment Share on other sites More sharing options...
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