bigmighty

I am so sorry. It sounds like you've already tried pretty much everything, but I have to ask - do anti-inflammatories help at all? My son was helped tremendously by steroid taper. Prior to that, he did much better on ibuprofen 3x daily. Presently, he takes turmeric capsules 2x daily and that seems to keep most of the symptoms at bay. I realize it's not a real solution to reduce inflammation rather than address the inciting problem. But I suspect you'd take anything you can get at this point. If you can get her to take ibuprofen either capsule liquid 3x daily for a few days or take the turmeric and see if she feels any better, maybe you all could get a small measure of relief. Again, I am just so incredibly sorry.

DS is in remission from the PANDAS, but still has a CVID along with IGA and IGM deficiencies. Those seem to be gradually worsening.

My son also is compound heterozygous for MTHFR (A1298C and C677T). He has been on Bactrim for 17 months with no problems.

My son got mycoplasmic pneumonia after having his tonsils removed. Augmentin didn't help, so he was switched to bactrim. It took a good five months on bactrim to kick it entirely.

I wish I had known how helpful anti-inflammatories are while searching for a more permanent solution. Turmeric capsules 2x daily reduce inflammation enough to help DS cope when he has an exacerbation. Ibuprofen helps, too, but not as much. I wish I had known that a steroid taper can help verify that systemic inflammation is the cause of the symptoms (behaviors diminish or disappear entirely while on a high enough dose of prednisone then re-emerge as steroids are reduced.

Carolyn Walsh in Leesburg is an internist who is very knowledgeable about lyme. No idea if she is taking new patients.

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.

Derek Johnson http://wheezefree.com/about_dkj.shtml

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.

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?

DS takes turmeric 2x daily and it helps greatly with inflammation - http://amzn.to/2eh0G3Q

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?

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.

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.

Wow. Thanks for sharing that.

I can only assume this does not bode well with respect to insurance companies covering IVIG for PANDAS.....

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.

They released the paper from this study: http://www.jaacap.com/article/S0890-8567(16)31158-3/fulltext

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.

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.

They planned to remove adenoids, as well, but it turned out that he didn't have any. Apparently, they sometimes disappear on their own by age 18. Just got back from internist. She want to leave DS on bactrim until at least the end of October. He is now taking turmeric for the inflammation, but she gave him a prescription for prednisone in case he needs it.

Thanks. Will read the Buhner book. This is going to be tricky. DS has had significant allergic reactions to every herbal supplement we have ever tried, plus NAC and many other supplements. Between that and the heart problems, am almost afraid to try dan shen. will ask the doctor on friday though and see what she thinks.

Mycoplasma was one significant thing found on his biopsied tonsils in addition to strep. I didn't realize that it was time-consuming to treat mycoplasma. Maybe he still has that infection and just needs to kill it. He gets long q-t intervals when on azithromycin, so is not permitted to take it. Maybe biaxin if the bactrim doesn't work? Yes. The prednisone makes a noticeable difference. He has tried to taper back off a couple of times but had to go right back on in order to be able to eat. Gonna try turmeric again and see if that works as well. Would prefer to long-term steroid use, if yes. Thanks so much.

DS 18 had tonsils removed in March, at recommendation of Dr K after a phone consult. DS had been mostly in remission for three years, but had an exacerbation every time he was exposed to strep, which was six or seven times a year. We wanted to get him to a better place before college. So tonsils come out. They are biopsied and reveal lots of various types of infection. DS has a difficult recovery but gets through it okay and has had one flare after another ever since. He has been on Augmentin 875 twice daily since the tonsils were removed. Has gotten strep three times, plus had what the internist thinks was mycoplasmic pneumonia. Went on bactrim for 14 days for that and seemed fine. Went back to Augmentin for two weeks and totally tanked. Back on Bactrim and Prednisone. Having OCD, social challenges, difficulty eating and even swallowing. Starting to wish we had not had tonsils out. What am I missing and what ought we to be considering? Back to internist this Friday and another phone call w/Dr. K in early August. What labs should we be asking for and how can we get DS back to a reasonably good place before he leaves for college in a month? Thanks in advance for your thoughts.

http://wtop.com/health/2016/04/a-new-test-for-lyme-disease-comes-from-an-unlikely-source-a-summer-intern/