T_Anna Posted January 22, 2013 Report Share Posted January 22, 2013 Ok, we went to Dr.T and we are trying Doxcyclomin while we wait for IVIG. Anyone try that? DS was in a much better mood yesterday (still not over avoidance), I think it was because he finally told his best friend that he has PANDAS. T.Anna DS 14.5 Link to comment Share on other sites More sharing options...
Hopeny Posted January 22, 2013 Report Share Posted January 22, 2013 We used Doxy for Lyme and co-infections. It had an almost miraculous effect when DD was in a major exacerbation on a 5 day course, for her most alarming psych symptoms. Literally within 24 hours. It does not work on Strep at all and has some action on Mycoplasma. We also did a 60 day course which I had high expectations for but did not get as much mileage as the Biaxin/Augmentin combo. I wanted to pair it with Rifampin for DD's Bartonella but she refuses to take it again because the liquid tastes really bad. This is not an issue in winter but you need to be very careful with sun exposure. Link to comment Share on other sites More sharing options...
T_Anna Posted January 24, 2013 Author Report Share Posted January 24, 2013 Last night he decided to shower and sleep in his own bed...and followed through. It wasn't easy and I'm sure he did rituals in the shower, but it was 12 days of nothing, I even heard him do some exposure work in the bathroom. Maybe the Doxy is working?? T.Anna - typing with her fingers crossed! DS 14.5 Link to comment Share on other sites More sharing options...
Hopeny Posted January 24, 2013 Report Share Posted January 24, 2013 Thats great! If you see an impact from Doxy I would highly suspect Lyme/Lyme confections. And even if he has Lyme it doesn't rule out other infections. It just makes it more complicated to figure out what's what. I think you said your son was very tired., another major Lyme flag. IMO given Lyme could be a factor be very careful with steroids , steroids will exacerbate Lyme. Unf. I have personal experience with this. Will be interesting to see what happens with lethargy, if I recall it took longer for this symptom to completely resolve with my dd but we did see early improvement. Rifampin/doxy can be a very good combo for Lyme/bartonella. Does your son have any rashes/stretch marks or foot sole pain? Link to comment Share on other sites More sharing options...
T_Anna Posted January 24, 2013 Author Report Share Posted January 24, 2013 We tested for Lyme (with Dr.T which may not be the right test), and it was negative. We are scheduled to try a steroid burst on Saturday, he did one before (late November), but it only seemed to make him sad last time. I have an appointment with a psychiatrist tonight to see if we should work with him on that end. I was thinking that maybe the sleeping a lot might be associated with depression/anxiety?? I read somewhere that depression in teens looks different than in adults though??! T.Anna DS 14.5 Link to comment Share on other sites More sharing options...
T_Anna Posted January 24, 2013 Author Report Share Posted January 24, 2013 Oh and no rashes or foot pain. T.Anna Link to comment Share on other sites More sharing options...
Hopeny Posted January 25, 2013 Report Share Posted January 25, 2013 That's good about the rashes and foot pain which can be signs of Bartonella which Rifampin treats. Lyme is EXTREMELY complicated and can be very hard to diagnose, it is generally made as a clinical diagnosis with supporting information from tests. We don't see Dr. T but from what I have read he is not an "LLMD" (neither is our PANDAS doctor or any of them as far as I know, so this is not a comment specifically about Dr T, its the specialty in general). PANDAS docs seem familiar with Lyme but don't really know how to read the tests, even if they do use Igenex or Stonybrook labs. Your son's extreme lethargy was a flag for me for Lyme, cannot recall if he had joint pain or not. At some juncture it would be good to get an eval by an LLMD to be thorough. A good response to Doxy could also be Mycoplasma, but the response you are seeing to me would also be a Lyme flag. Doxy does not touch strep. I do not pretend to understand this article but this psychiatrist is in Red Bank, NJ, not sure where you live. http://www.ilads.org/ilads_news/2012/robert-c-bransfield-md-the-psychoimmunology-of-lymetick-borne-diseases-and-its-association-with-neuropsychiatric-symptoms/ He might also be a good resource for you as someone who is knowledgable about treating psychiatric conditions triggered by medical illness, Lyme or otherwise. We have not seen him (too far for us) but our LLMD recommended him and I know he is widely respected. Good luck Link to comment Share on other sites More sharing options...
T_Anna Posted January 25, 2013 Author Report Share Posted January 25, 2013 Thanks. Went to see highly recommended psychiatrist in Manhattan (psychiatrist and pediatrician) and I was surprised with how ignorant he was regarding PANDAS. I really need a psych who has treated PANDAS kids before. I left him the Saving Sammy book, but as smart as experienced as he seems, I have no patience for being any ones test patient. I will look into how far Redbank is, at this point I'll travel 45 min.- 1 hour if it's not every week. He has no joint pains and the lethargy may just be how his body copes with meds/illness. He did test positive for mycolplasma so that may explain why it was working at all or why he just tested positive with a rapid strep test. T.Anna Link to comment Share on other sites More sharing options...
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