Lost remission after tonsellectomy

[bigmighty]

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.

[jan251]

For starters, has the immune system been looked at (for example, IgG subclasses) ?

 

What infections were found in the tonsils? That would seem a good place to go, treat for those.

 

Mycoplasma can be a long-term challenge to treat. Zith and Biaxin are among the usual choices. It is encouraging that Bactrim seemed to help though there are a number of things Bactrim may treat, such as bartonella, usually in combination with something else.

 

Has prednisone helped before? It can be unhelpful in some cases such as with lyme and/or the usual coinfections, of which myco is one.

 

Has he ever taken NAC? Might also be something to consider for myco.

 

Good luck - that's a significant time crunch!

Edited July 13, 2016 by jan251

[bigmighty]

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.

[jan251]

I think Biaxin might have the same QT issue but I'm no expert; ask the doc.

 

If you are interested in herbal treatments for myco, check out Buhner's book and also his website. The protocol in his book is different - I think the website is supposedly the most up to date but I found the book to be very informative.

[LNN]

I highly recommend Stephen Buhner's book on mycoplasma - he goes in depth on what's happening inside the body and why it can be so hard to treat and get rid of. It was fascinating. So if you can switch from augmentin back to bactrim or to biaxin, then that's the first thing I'd do. The second thing you can try is an herbal tincture called Dan Shen (aka Red Sage) which Buhner recommends. In January, research was published showing that this herb can prevent the migration of immune cells across the BBB - which is what causes PANS. So try treating the infection for months instead of weeks and consider Dan Shen to close the BBB

 

http://latitudes.org/dan-shen-become-important-treatment-pandaspans/

[bigmighty]

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.

[Gpookie]

I would check his IgG subclasses ASAP. And serotypes...Sounds as if he's immune deficient...

[Mommby123]

Did he have his adenoids removed also? It's usually hand in hand with the tonsils but sometimes they do one and not the other. My son had his out ( not tonsils) as a toddler but it grew back. I wish I had insisted on the tonsils for him. Daughter had both out and had done really well. They were surprised how nasty her adenoids were Tonsils were bad but the adenoid was a disaster with scar tissue and multiple infections. It took about a year but it got her about 80% over the PANDAS sx's.

[bigmighty]

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.