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DS8 is 19 months in since the sudden onset. We've had multiple abx treatments, tonsils removed, IVIG, high dose pulse steroids, 10 weeks of partial hospitalization for ERP therapy, another round of diagnostic testing. Positive for D1 antibodies on Cunningham panel, positive for Babesia duncani, and lyme. Some indication of bartonella. Treatment for lyme & co-infections. Another HD IVIG...more Babesia/Lyme/Bart treatment. Added LDN...switching out abx for Lyme&Co. Overall better than last year but aggression and liability issues still. Still getting one or two red hot ears without explanation (maybe lyme?) frequently. Still dealing with enuresis. Currently on minocycline, cefuroxime, mepron, ibuprophen, LDN, glutathione, probiotics (visbiome & florastor), loratidine (antihistimine), vit D, BLT drops, phosphotidylcholine, multi-vitamin.

 

So the question is...do you think it is time for plasmapheresis?

 

Thanks!

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Isn't plasmapheresis not recommended when there's current infection? I'm not very familiar with it, but I was under the impression that the risks are high and the procedure expensive. Would something like rituximab be a bit less risky?

 

Have any of the various treatments brought relief from symptoms? Did the IVIg help? Is there an immune deficiency?

 

 

FWIW, Florastor is bad news for my child. It very quickly increases OCD.

 

My child also gets red ears though I never did quite figure that out. It's hard to tell these days when he has headphones on all the time at home.... If I recall, there were several possible causes and I narrowed it down but now I can't remember what my thought process was.

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Hi Jan251,

Thanks for your reply. IVIG has helped, but we are still not out of the woods. Fortunately we haven't had issues with florastor. It's been interesting that everyone in our household got the flu this winter except our PANDA/PANS kiddo.

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I think removing antibodies - which is what plasmapheresis does - would be the worst thing you could do with Lyme and co-infections. You need the immune system to have T cells that can fight these infections. You don't want to strip them away, making the body start all over again.

 

I know you might be thinking that pheresis also gets rid of auto-antibodies. But the better way to handle this would be to help the body reduce inflammation and hep close the blood brain barrier.

 

For bartonella, I've found arginine - an OTC amino acid supplement - to be very helpful for symptoms, especially fatigue and pain (500 mg 3x/day). I've also found Japanese Knotwood helpful for inflammation (1/2 tsp 3x/day). And Red Sage is very helpful for Pans symptoms http://latitudes.org/dan-shen-become-important-treatment-pandaspans/

 

For anger, 50-100 mg of niacinamide (flush-free niacin, which is vitamin B3) is really helpful. Calms my kids down w/in 20 min.

 

And 3000 mcg of sublingual adenocobalamin (a form of vitamin B12) pretty much cured enuresis here. https://www.hindawi.com/journals/isrn/2012/789706/

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