MPS1978

LLM, thank you for the insightful response. Your thoughts certainly make sense to me.

Thanks Hopeny and rowingmom--I agree with your feeling that we're dealing with lyme/Bart. Wife did mention that DS has complained a few times about joint pain. No stretch marks. We get our lyme/co-infection results back in the next few weeks and will provide an update on the results. Thanks again.

Not yet--T&A is scheduled at the end of November. Are your thoughts that the Rifampin is doing what it's supposed to do and getting at strep lodged in the tonsils and hence the die-off reaction? Possible. Anyway, PANDAS/PANS is such a puzzle to address.

Dr. L's view is that Motrin temporarily closes the blood-brain barrier, which temporarily prevents the autoantibodies from attacking the basal ganglia.

Hi, 6.5 year-old DS was part of NIH clinical study and received 2HD IVIGs this past year, which got him back to 95% right before school started. Since school began, and the inevitable exposure to bacteria/viruses at school, he declined to a manageable range of 70% to 85% depending on the day/week. Dr. L is our outside PANDAS doc, and just saw her several weeks ago to resume treatment under her since we are now outside the 6-month NIH study mark (didn't want to do something on our own that biased the IVIG study). Since DS was not doing as well as we had him right before school started (but still manageable) at the time of the Dr. L appointment, Dr. L placed him no 7-day course of Rifampin to clear out any insidious strep that the Amox did not reach (up to then DS was on 1000mg of Amox a day). Anyway, during and now 4-days post Rifampin DS is sadly back to pre-NIH IVIG state of health. OCD/rate/emotional volatility is through the roof and back to where we were when we first came down with PANDAS. I've read here that Rifampin produces serious herxing for Lyme/other co-infections and now am thinking we must have stirred up something other than strep. Dr. L does not think it's a herx reaction and possibly a recurrence of strep (but DS tested negative on the rapid test), but my gut tells me something else is going on here. Part of me is hopeful that this is simply a herx and is just a matter of time for DS to recover after the dead/dying toxins are cleared from his system; other part is regretting the use of Rifampin since DS was manageable prior to it and fearful that the Rifampin herx has undone all the IVIG gains we realized by kickstarting his dysfunctioning immune system into overdrive that needs steroids or another round of IVIG to halt. We're in the initial phase of seeing McCabe to treat possible lyme/co-infections and candida and testing is underway. Any ideas/experiences to share? Maybe a steriod-burst if things don't get better in the next few days? Very much appreciated.

PowPow, can you PM the name of the integrative/LLMD doc in Fairfax, VA as well? Thank you.