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bigmighty

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bigmighty last won the day on July 31 2016

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About bigmighty

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  1. Carolyn Walsh in Leesburg is an internist who is very knowledgeable about lyme. No idea if she is taking new patients.
  2. Just wondering if anyone else on this board is in Pittsburgh. DS19 plans to keep his internist in northern VA so not super worried about finding any specific doctors here for him. Just wanted to know if there are any others in this part of PA.
  3. Derek Johnson http://wheezefree.com/about_dkj.shtml
  4. When my son was in the midst of his most severe exacerbation he did steriod taper for 3 weeks starting at 35 mg. It was about a month after the steroid taper ended (while still on Augmentin) that he began to improve. When he finally did improve, the improvement was dramatic and led to a very long remission of symptoms.
  5. Anyone else with kids who are generally immune deficit? DS18 has been on prophylactic bactrim during 1st year in college (after having tonsils out last spring). We had anticipated weaning him down and then possibly off by next fall. But now his labs are showing IGA and IGM deficiencies. Still has a CVID, as well, but not low enough to qualify for IVIG. I had thought DS would eventually be entirely off of antibiotics, by the end of his time at university, at the very latest. Now it is looking like he may be on them indefinitely. Are others in this boat? If so, how are you coming to terms with the possibility of daily antibiotics for life?
  6. DS takes turmeric 2x daily and it helps greatly with inflammation - http://amzn.to/2eh0G3Q
  7. Do symptoms decrease if you take ibuprofen or turmeric? Did Dr B Try prednisone and/or is that something you'd consider if you haven't already done it?
  8. DS had been in remission for quite some time when Dr K highly recommended that he have his tonsils out prior to starting college. He had them removed this past March, was on antibiotics and steroids for months afterwards. Strep and Mycoplasma were found on the tonsils. Anyway, he ended up getting mycoplasmic pneumonia and was sick for months including significant flair of most of his PANDAS symptoms. Ended up on bactrim since this past May. He is now away at college and can only keep his symptoms under control with the bactrim. Every time he either stops or switches to augmentin, his ocd returns in full along with inability to eat or make eye contact. Our feelings are mixed. On the one hand, there was clearly stuff trapped in his tonsils that was not good and now it's working its way out of his system. On the other hand, our goal in having his tonsils removed was to get him in a better position before beginning college and, at least for the short- and mid-range term, we inadvertently made things worse. Dr K thinks the only thing we can do is have IVIG, but we are hesitant.
  9. About six months ago, I was put on Alinia for a week, followed by Nystatin for a week. I recall the doc saying that I should not take both at the same time. So sorry for his reaction. I hope you figure it out.
  10. Wow. Thanks for sharing that.
  11. I can only assume this does not bode well with respect to insurance companies covering IVIG for PANDAS.....
  12. Conclusion IVIG was safe and well-tolerated. Between-group differences were smaller than anticipated, and the double-blind comparison failed to demonstrate superiority of IVIG over placebo. The observed open-label improvements indicate future trials would benefit from larger sample sizes designed in part to aid in the identification of biomarkers predictive of a positive response to immunotherapy. Future investigations focused on the natural history of PANDAS are also warranted.
  13. They released the paper from this study: http://www.jaacap.com/article/S0890-8567(16)31158-3/fulltext
  14. DS used ibu for nearly a full year. Recently tried turmeric, after having had no success with it five years ago, and it's working fairly well.
  15. Thanks for sharing this. My son was in the 2011 study, so I was fascinated to see this. NIH promised to send me a copy of the final full report, once published. The last I heard from NIH was about nine months ago for a follow-up phone interview. They assured me I would be informed when the full details were finally disclosed. And I have received nothing yet.