AmySLP Posted July 15, 2010 Report Posted July 15, 2010 I had never heard this term before until Dr. B pointed out that it was one of the abnormal labs in our 3 yr old lab results. Is this elevated in other kids with PANDAS?
lynn Posted July 15, 2010 Report Posted July 15, 2010 Amy, you and I posted at the same time (mine is at the "IVIG should I or shouldn't I" post.) My DS also has abnormally high C3 circulating complexes, and it appears that there is some concern that this may affect IVIG. In addition, it is typical of Lyme involvement.
sf_mom Posted July 15, 2010 Report Posted July 15, 2010 Yes, read my comments there: http://www.latitudes.org/forums/index.php?...art=#entry75396 Full Lyme work-up via Igenex with co-infections should be preformed prior to IVIG. IVIG may or may not be helpful to child with with Lyme. Elevated immune complexes are common with Lyme but is not always present. The specific antibiotics targeting different tick born illnesses is critical to successful treatment. -Wendy
mama2alex Posted July 15, 2010 Report Posted July 15, 2010 Dr. K had our son's circulating immune complexes tested before he would recommend a second high-dose IVIG. I don't fully understand it, but I think if they are elevated, IVIG is counter-indicated, at least until they are normal again.
mandyknowles Posted July 16, 2010 Report Posted July 16, 2010 I had never heard this term before until Dr. B pointed out that it was one of the abnormal labs in our 3 yr old lab results. Is this elevated in other kids with PANDAS? my daughters was 19 i think
kimballot Posted July 16, 2010 Report Posted July 16, 2010 I am still trying to grasp the c3D compounds. I had not heard that IVIG is contraindicated. I thought it was evidence of an autoimmune disorder and helped to build a case to insurance companies to pay for IVIG. My son's are quite elevated.
monarchcat Posted July 16, 2010 Report Posted July 16, 2010 I am right at this moment looking at my son's lab results that Dr. B's office faxed to me today. I'll have a follow up appt to discuss with him, but for the moment I'm just looking them over. He tested low on almost all strep pneum. tests and the C3 is elevated (220 mg/dL, where the range is 90-180 mg/dL). I have no idea what that means! And, dammit, it looks like the lab screwed up because we specifically told them the Lyme was to be sent to Igenex (and it said it on the slip), but it was tested locally instead. He's negative according to the Lyme screen that was done, but it had been done this way before and Dr. B said it was worthless without the Igenex screen.
sf_mom Posted July 16, 2010 Report Posted July 16, 2010 (edited) Was he positive for any bands and if so which ones? For Igenex if there is two positive double stared bands they are positive for Lyme. The double stared bands are the following. **23-25 **31 **34 **39 **41 **83-93 Additional comments: ***** Presence of only one double starred band or indeterminate double starred in a negative report may indicated clinical significance therefore we recommend testing with another method or retesting in 4-6 weeks***** -Wendy Edited July 16, 2010 by SF Mom
lynn Posted July 16, 2010 Report Posted July 16, 2010 Does anyone know how the complexes decrease or what causes them to be high?
momaine Posted July 17, 2010 Report Posted July 17, 2010 I too thought a high C3d was indicative of an autoimmune process going on. If you google it, it says autoimmnue, commonly elevated in Lupus and another autoimmune disorder. (can't remember which one off the to of my head) I'm certain that Dr. B told me that the elevated number would help get IVIG coverage. He never said anything about IVIG being less effective in people with elevated C3d. Also, my dd has had one ivig with Dr. B 3 weeks ago and is improving despit eher elevated C3D. Angela
justinekno Posted July 17, 2010 Report Posted July 17, 2010 I wonder if the kids who have an elevated CD3 and are not successful with IVIG, are the ones who have Lyme or some other co-infection? I agree with other people who say it is important to test for these other infections prior to moving onto IVIG.
lynn Posted July 17, 2010 Report Posted July 17, 2010 I'm glad to hear that your DD is improving Angela! Is it amazing improvement or slow? My DS was tested for Lyme and scored all negatives on the western blot but it was not Ingenex. Wonder if I need to get it redone?
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