ShaesMom

Ditto Eamom. Reading your post and the first thing that came to mind were gluten and dairy issues. Enterolab tests for intolerances via stool sampling and doesn't require a dr signature.

So when you say longer dose, is LLMD giving the total same amount as before only over a five day period or giving the same daily dose for five days instead of two? I have never heard of anyone doing five straight days of IVIG-high dose or normal dose-and we are a monthly IVIG family. I would be concerned my dd would have a terrible reaction. Will it be done in the hospital?

Parasites and the full moon are often a big topic on Lymenet.

Don't know about the G6PD stuff but we are actually looking into Mast Cells for Shae. I'll have to watch this video. Thanks I've ran into a couple of blogs where the Mom's and kids have both lyme (congential) and MCAS. One poor lady is really sick with the MCAS. http://www.ticksandtrust.blogspot.com/ http://www.caringbridge.org/visit/elizabethfadling/journal/1

Our LLMD started us off on Ceftin and then added in Azith.

Yes, I TOTALLY agree! I've had several very lively discussions with my doc about my "carrier" son. Just because he doesn't have puss on his tonsils and a fever, and his strep doesn't clear with a regular course of antibiotics, doesn't mean we should just call him a carrier and give up!! Every single swab he's EVER had is positive, so we don't need to guess where the strep is. Clearly it's in the back of his throat, and likely elsewhere too. He had "migraines" and "allergies" which I believe was strep in his sinuses. They both cleared within 2 months of starting lyme treatment. My PANDAS son had major and continuous improvement when my "carrier" son was on abx along with him. Unfortunately, we were unable to continue abx with carrier DS, due to severe stomach pains. Ever since we took "carrier" DS off abx, PANDAS DS has been struggling. And at about 6 weeks off abx, carrier DS got that peculiar stink back on his breath. Ugh. At least the headaches haven't come back (yet). So frustrating! And my family doc doesn't believe a word I'm saying because it doesn't make sense medically. Okay, done ranting... for now... Have you considered meeting with an ENT and having carrier DS's tonsils removed?

I think this is a really great question and one that may be debated for along time. We are a family of four with Lyme and only one dx'd with PANS. PANS child is by far the sickest if you exclude my cancer dx. She has been dx'd with CVID, PANS, Lyme & Co & Eosinophilic Esogphagitis. Plus she has some yet clearly undefined problem with her right kidney that Dr's monitor yearly. She has had three periods where her sx's/illness was clearly more PANS and treatment of underlying infection (2 Pseudomonas & 1 Strep related) "cured" sx's. Currently, I believe her PANS is in remission. However, like ChristianMoms child, whenever she is ill her sx tend to be PANS like. No matter what is going on in her body, she always has leg pain, headaches, and mood issues that border on raging. BUT the mood issues are short lived, can generally be linked back to a trigger within four hours, and she is usually in more "control"-meaning she is able to say, I can't stop myself, leave me alone so I can calm down. So PANS like but definitely different. DS12 had ASO titers of 1100 and Dnase in the 400's when dx'd with lyme but no PANS sx. He actually had more typical EE sx. A year after starting tx his ASO is still in the 400's I believe but he has never had raging or PANS sx. DH has elevated Dnase but normal ASO titers. I have both normal Dnase & ASO but I recently failed a Pneumo Vax challenage and have low IgG totals, and Subclass 1 & 3; so I am headed towards a dx of CVID myself. So everyone in our family clearly has issues with strep but only one has the severe sx associated with PANS.