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Hi everyone, Have any of you had a dramatic regression/increase in symptoms from starting Rifampin? To give context, I’m 22 and had untreated PANS for eight years. I got diagnosed at 19 in 2014, had two IVIG’s, a tonsillectomy, a year of steroids, and I went into complete remission by the end of 2015. I got Lyme in 2016 and relapsed, and I’ve since had another IVIG and have been treating Lyme and co-infections with an LLMD. I didn’t start Lyme treatment until December—nine months after the initial infection. I also tested positive for Babesia and Relapsing Fever. I was doing really well this summer and was definitely getting much better, but in the last few weeks, I’ve gone downhill fast. When I started Rifampin two weeks ago (in a MWF pulse dosing), it dramatically accelerated my decline. I still have an occasional, pretty-good day, but most of the time, I’m so depressed I can barely take care of myself. My word-finding issues have returned, and I speak nonsense frequently. The atonic seizures (one of my most severe PANS symptoms since 2014) have come back, too. I feel confused and disoriented often, with periods of time when I feel dissociated and really far away from everything around me. I’m having all of the symptoms that I get when all breaks loose with a full-blown PANS exacerbation/relapse. Yet my parents claim I don’t have the same “look” as when I’m really at rock bottom. My LLMD thinks I’m herxing, but my psychiatrist thinks it sounds more like PANS (purely autoimmune) and that Rifampin is making my psych drugs (Wellbutrin, Lamictal, and Seroquel) less effective. My LLMD did warn that this new Lyme protocol could make my mood symptoms worse, but why so many other symptoms? So far, my other herxes have never lasted as long as this, so I’m afraid this is an autoimmune thing again. I'm detoxing with Burbur and Alka-Seltzer Gold, but any reduction in symptoms never lasts long. Has anyone else had a similar experience with Lyme treatment, and especially Rifampin? If so, what do you do to make this better? I’m so tempted to do a Prednisone burst, because that’s almost always made PANS symptoms go away, but I know that’s a bad idea with an active infection. But how am I supposed to keep living like this?
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I have 3 children. DD10 and DS6 (twins). The boys just got their tonsils out on April 15 AND HAVE A + HOME R/S! I am floored. They were on Augmentin and dd10 had a + r/s on it. Changed to Azith. (Or maybe vice versa). Sorry. It's been a long month. Anyway. She tested positive on both. So she was changed to Duricef. They seemed to be doing well for a few weeks. Then one son started complaining of headaches, bellyaches and kicked up anxiety. The other son's OCD kicked up. I just did a r/s and one is very + and the other is very faint. Dd10 is negative. When my daughter tested + last time and was put on Duricef, they switched the boys to Duricef. Here is my question: can siblings that all have PANDAS do better on different abx? If it's group A...than why doesnt the same abx work? Am I asking that right??? *Brought them to Pedi today both R/S Pos. And send out cultures done. Alternative MD suggests adding Rifampin to Duricef. Pedi suggests changing to Augmentin. Any experience good?bad with Rifampin?
