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anon23
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 Thu, Sep 14 2023, 12:01 pm
Hoping to get some help! My son developed PANS symptoms literally overnight: severe sleep anxiety, smelling hands, tics, and defiant behavior (he is normally very calm and easygoing). We did extensive bloodwork. Pandas is negative, but my pediatrician put him on zithromax anyway. Some days are better than others, so we don't know for sure if it's helping.
Lyme came back interesting: negative for most co-infections, but the lyme line blot is abnormal for 2 IgG tests. My pediatrician says that 5 need to be positive in order for it to be considered lyme. Chai for Lyme said if something is showing present, it's worthwhile to pursue, but most practitioners are out-of-pocket, as the CDC does not consider 2 factors a positive, and I heard too many nightmares of this being an endless financial road with no end in sight. We do not have spare money to spend on this. I would figure it out if I knew for certain that it's a worthwhile route.
Did anyone have not all factors test positive for lyme, treat for lyme, and have success? Thanks so much all.
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amother
Mulberry
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Tue, Oct 31 2023, 3:45 pm
I see this is a little old, and hopefully you figured things out by now, but 2 IgG sounds indicative of a past Lyme infection, not current. My child had Lyme (caught early BH and treated with antibiotics) a few years ago and I recently tested child and IgG p41 and IgG p23 were the only markers that came up positive.
BH, my child has no clear symptoms of chronic Lyme and the pediatrician said these results are nothing to worry about. However, since your child IS showing some behavioral signs, it's worth checking it out with a Lyme-literate doctor.
Does your child show any physical signs as well as the behavioral signs? Joint pain, nerve issues, fatigue, etc.
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anon23
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Tue, Oct 31 2023, 8:00 pm
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Thanks for all the responses. We did not end up going the lyme route because I couldn't get enough information. B"H, he is showing signs of significant improvement. He is still on zithromax because not all the symptom are away, but it's much better than it was before. I'm still open to hearing more information if anyone has, because he is not totally better, and I would pursue lyme if I had more concrete information.
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oneofakind
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Tue, Oct 31 2023, 8:33 pm
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Dr. Visconti is an infectious disease specialist in Staten Island. He's worth consulting with and is honest and knowledgeable so he'll will tell you if your child does or does not have Lyme or PANS
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anon23
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Tue, Oct 31 2023, 8:48 pm
| oneofakind wrote: | | Dr. Visconti is an infectious disease specialist in Staten Island. He's worth consulting with and is honest and knowledgeable so he'll will tell you if your child does or does not have Lyme or PANS |
Do you have personal experience with him? I was recommended not to go to him by someone who has experience. Would love to hear more info if you have.
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oneofakind
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Thu, Nov 02 2023, 10:21 am
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I sent a close relative and a friend there and both were very happy.
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