LNN Posted August 18, 2013 Report Share Posted August 18, 2013 DS (Pandas/lyme) is AG DD (Pandas-ish but no issues since using methylation supps) is also AG DH who doesn't have Pandas but whose family originates from the Greek/Turkish isthmus is also AG I am GG As Norcal mom points out, gene mutations can raise or lower your risk to certain disease but it doesn't cast your fate in stone. It's often a combination of various genetic mutations that have greater infulence than any single gene. Cobbiemommy - As I understand it, this paper was looking to idenitfy a gene that could be used as a marker for diagnosis - much like Cuningham's test - something that says Pandas likely or Pandas not likely. They're saying TNF -308 may be a good marker for diagnosis. But as Norcal mom says and our small sample of results show, it may be limited to ancestry linked to Turkish decent and may not apply to others. It's possible a treatment like IVIG could suppress gene expression temporarily and allow symptoms to resolve. But that's me thinking out loud. I don't know of any research to support that idea. From all I can tell, no one knows why or how IVIG works for some kids with Pandas. EAMom 1 Link to comment Share on other sites More sharing options...
pr40 Posted August 18, 2013 Report Share Posted August 18, 2013 the study says that another Canadian study reached different results in respect to AA. AA goes for boys and for a specific genetic type, Turkish or something. (I have some of those, too.) Which itself suggests that there are other genes which are involved. the reason they went for TNF is that it is implicated in other auto-immune conditions. There is a whole slew of such studies in fact for all sorts of things including cancers. Another implication of this study that was not mentioned is that we can treat PANDAS the way we treat rheumatoid arthritis by suppressing TNF. I am saying that that is a potential implication not an actual fact.Looked another way, this study is just making us run in circles. The real breakthrough would be that they identify mechanism underlying auto-immune conditions and then also identify genes that are involved. EAMom 1 Link to comment Share on other sites More sharing options...
T_Anna Posted August 18, 2013 Report Share Posted August 18, 2013 (edited) Ds15 is AG German/Russian (ashkenaz) Btw, listening to some archived Radio Pandas and heard that Dr.K said at some point that from over 800 patients the majority were Jewish, Italian and Celtic British (in that order). Anyone else have any info on that? T.anna Edited August 18, 2013 by T.Anna Link to comment Share on other sites More sharing options...
EAMom Posted August 18, 2013 Report Share Posted August 18, 2013 Here is a link to the chart in the study http://www.ijhg.com/viewimage.asp?img=IndianJHumGenet_2013_19_2_196_116116_t1.jpg So, according to the study, all PANDAS kids had at least 1 A allele, and most (86.5%) were AA. None of the controls were AA and most (91.4%) were GG. That doesn't seem to be the case here (so far)... Maybe the difference is strictly genetic (Turkish vs non-Turkish). Or, maybe there is a difference in US vs Turkey due to different strains of strep. Maybe in the US we now have strains of strep that will trigger PANDAS in the GG's. Or maybe in the US we have more underlying Lyme, which makes GG's vulnerable to PANDAS. Link to comment Share on other sites More sharing options...
EAMom Posted August 18, 2013 Report Share Posted August 18, 2013 (edited) T. Anna yeah, the problem with Dr. K's ethnic findings is that his patient population is extremely biased. Lots of PANDAS goes undiagnosed and certain demographic groups (think kid in the foster care system, or single parent with no computer, no education, culturally doesn't know to question the first misdiagnosis and research PANDAS, unable to travel or see specialists, or pay out of pocket for IVIG) are NOT going to be flocking to him. He's also in the midwest. Here's a study in Polynesians..."strep, OCD, autoimmune, depression, illicit drug" use are all mentioned but I don't see "PANDAS" in the summary! http://www.ncbi.nlm.nih.gov/pubmed/12860788 Edited August 18, 2013 by EAMom SSS 1 Link to comment Share on other sites More sharing options...
lynn Posted August 19, 2013 Report Share Posted August 19, 2013 DS is AG Link to comment Share on other sites More sharing options...
Dedee Posted August 19, 2013 Report Share Posted August 19, 2013 We are all GG here. Irish / German heritage. Dedee Link to comment Share on other sites More sharing options...
Kristen_B Posted August 19, 2013 Report Share Posted August 19, 2013 My PANDAS son and I are both GG and my son is part Turkish, though mostly German/English/French/Scandanavian. Link to comment Share on other sites More sharing options...
Kristen_B Posted August 19, 2013 Report Share Posted August 19, 2013 I wonder if the "PANDAS" kids in that study were actually garden-variety OCD. EAMom 1 Link to comment Share on other sites More sharing options...
Kristen_B Posted August 19, 2013 Report Share Posted August 19, 2013 ....my other thought is that my boys didn't inherit any As from their (now deceased) Turkish Dad, if he had any As. I think I had/have PANDAS, so don't think it all is wrapped up in the AAs or AGs. Link to comment Share on other sites More sharing options...
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