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dbasel

ASD/PANS/PANDAS with Lyme and low immune system - IVIG solution?

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I have a 3y10m old kid here who had an early ASD diagnosis, was later found to have tons of infections (C.Diff, H.Pylori, Strep, Mycoplasma, etc., etc.) and also found to have Lyme.  Lyme was inconclusive (IND band 41) but with highly positive IGXSpot (>3) and IgeneX confirmed B.Henselae as well as B.Duncani.  Dr. C.R.J. prescribed antibiotics which have made a great improvement and he's still taking them after ~5-6 months.

In parallel we tested immune function with Bouboulis and IgG as well as IgA we below the Low levels for his age.  Multiple docs are recommending IVIG and I found this article: 

https://www.elynsgroup.com/journal/article/pandas-baseline-immunoglobulin-levels-predict-achievement-of-remission-at-one-year-following-ivig-therapy

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Based on this correlation I am hopeful that IVIG may be the answer and help lift some of the core symptoms?  At the moment he has pretty much lost many of the ASD symptoms but he appears to have PANS-PANDAS like symptoms -- OCD, anxiety.  Repetitive language (form of OCD?)  No tics.  One concern is that his OCD is 'calming' whereas  apparently in true PANDAS cases it accelerates anxiety and vice-versa?


Has anybody here gone through similar?  Lyme (maybe congenital?  wife tested same on IgeneX and DNA Connexions) plus low immune system, with ASD-changing-into-PANS/PANDAS type symptoms?

 

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We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?"

Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there.  But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety.  So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all.

If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).

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