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Pediatrician just dumped my 16 yo DS


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Maybe don't treat the infections and just find some good supplements to control inflammation and then do IVIG when necessary?? Maybe that would be easier?

 

 

Actually, he's already on a lot of supplements (we see a holistic chiropractor, and that has definitely made a big difference, but truly doesn't get rid of the infections. He's also gotten a year's worth of IVIG (every 6 - 8 weeks). That made a HUGE difference the first few, and then helped keep things calmer after that. But, everyone of his docs (we see Dr. B., Dr. L, LLMD, and a DAN doc, plus 2 cardiologists, and...oh yeah...I forgot, a hematologist (because of the enlarged spleen), have all said we have to get rid of the infections. There's definitely a difference when we do treat aggressively (biaxin now, and then IV abx if we can get the approval,) but it just keeps coming back.

 

It just came as such a straange surprise when the doc pulled what he did...no provocation...nothing, except asking him to do followup blood work for tests that had already come back positive in the past (so even with insurance, it could be justified, because he was already positive for them all!)

 

Still waiting for my family practice docs to get back to me, but they're not open today. I'd be surprised if they say "no", although they might not want to do one or 2 of the things I listed, but I can always work around those. My doc is very open minded, as she was an NP before getting her DO, has an autoimmune disorder, and we've talked about my kids in the past. But, it's just very aggrivating that it came to this, particularly since I thought he was onboard.

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  • 3 weeks later...

How is your son doing now? Any better with Lyme treatment?

 

 

He's been getting lyme treatment for the past 1 1/2 years. Overall, he's better (as I had mentioned previously,) and I do attribute it to Lyme tx, HD IVIG (there were very clear and immediate benefits observed after IVIG), and supplements. But, we do still see a lot of up and downs.

 

Right now, he's on his way to the ER (with DH), because he fell on the stairs and school and hear a "loud crack" in his leg. He was having increased chorea before that, and although he denies that it was from sudden weakness and/or coordination, I have my suspicions, because he's also been having mood swings and memory loss the past few days.

 

Ugh!

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