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wisdom_seeker posted a topic in PANS / PANDAS (Lyme included)We finally have DS16's Cunningham Panel, IgeneX, and other lab results. Given the elevated CaMKII, there is definitely an autoimmune reaction, but it's not clear to me how intense, and whether any of the pathogens he tests positive to are likely to be the culprits, or if we need to look further. Cunningham panel: test = value (normal range; mean) DRD1 IgG = 500 (500-2,000; 1,056) DRD2L IgG = 4,000 (2,000-8,000; 6,000) LYSO-GM1 = 80 ( 80-320; 147) anti-Tubulin = 1,000 ( 250-1,000; 609) CaMKII = 184 ( 53-130; 95) The Ca++/Calmoudin-dependent protein kinase (CAM KII) activation seems high. But how high is it? Moleculera Lab writes that they now have a database of over 1000 patients, but their attached 2006 paper by Kirvan, Swedo, Snider, Cunningham only shows data on their first 16 PANDAS patients. DS's levels are higher than all but two of those reference kids with acute PANDAS, and almost as high as that in kids with Sydenham's chorea, but is that high enough to impress someone like Swedo or Dr. K? And more importantly, insurance companies to approve IVIG? I'm also fuzzy on how CAMKII activation would acount for the extreme anxiety, multisensory integration, choreiform movements, pessimistic thinking and other symptoms. Causative agents: MDL / IgeneX, stool pathology, etc: The good news is that there's no sign of Lyme or coinfections by ELISA or Western blot. He does have elevated antibodies to some pathogens (EBV, HHV-6, west nile virus, Mycoplasma) but PCR is negative. Does that mean those area all past infections, or simply dormant at the moment? For example, here's Epstein-Barr virus, tested in 11/2011 and 2016 Also tested now through MDL, which give unit-less index values, plus they test for virus fragments by PCR. MDL index 2011 2016 normal (neg <= 0.89, pos >=1.10) EBV EA IgM 0.52 EBV EA IgG 39 41 <100 u/mL 0.48 EBV VCA IgM 4 18 <100 0.09 EBV VCA IgG 1030 H 971 H <100 4.88 EBV EBNA IgM 0.21 EBV EBNA IgG 444 H 510 H < 100 1.83 EBV RT PCR negative OK, how to interpret this? I thought IgM disappears after a few months, not that there are low residual levels. And that IgG ought to drop with increasing years since an infection unless there are reactivations. So: Does a +15% in EBNA and quadrupling in IgM simply show uncertainty in lab results, or that there have been some reactivations since? Since EBV RT PCR is negative, does that mean we need not worry about EBV as a causative agent for his PANS, or simply that there's not been a reactivation the last month? How can there be such a difference between the two labs? I'd assumed the index is simply an absolute value / normal level, which fits the EA IgG, but not the VCA or EBNA values. Similarly, Mycoplasma pneumoniae: 2016 normal MDL index: IgM EIA 78 <770 0.38 IgG EIA 1.21 <0.90 1.43 PCR negative Does this indicate a distant infection? I read that IgM can last up to a few months, so I'm surprised to see any level of IgM. Unless it too can establish a latent intracellular infection, as theorized. Still, there are no smoking guns here. Ditto for HHV-6, West Nile Virus. The only other things that fournd were MARCONS in Dec, and 4+Mucoid Escnarchia coli and 3+ Citrobacter freundi complex in stool parastiology. Where do we go from here?
Hi all, I have very high titers of coxsackie a/b, mycoplasma p, EBV, HHV-6, and was rx'd Valtrex by Dr T. I started it last week for a few days (took half dose for 2 days, then full dose for 1 or 2 days?) and then stopped due to what I thought might be side effects. In general I was noticing an increase in anxiety and emotional lability. It's certainly possible this was coincidental and not related to Valtrex - I don't know. I really want to give it a try though and see if it helps me - Dr T wants me to too (we're hoping by reducing titers my anxiety/OCD sx will improve). Anyone out there with good, bad, or indifferent experiences?? How long did you take it and when did you notice improvement? Thank you all so much...