Hello to all.
My dd8 just tested positive for Bartonella last week. She tested below normal on her Igg in March and super high on her Hppv antibodies so the dr has been treating her for viral and bacterial since then. She has had awful herx on her antibiotics too several times (because I was confused and could not reach dr and did not continue them a few times). The herx lead us to take the imuno science Lyme test which was negative for Lyme but positive for Bartonella.
She is now taking
Azithromycin (she's already been on this for several months)
Rifampin
Bactrim (just M-Th)
She is starting on Banderol drops with Samento drops to be added and CSA tinture to be added.
Artemisia
Resveratrol (to help GI tract)
N-AC (to help liver)
Red Marine Algae (for Hppv virus)
Pure Encapsulations - O.N.E. Multi Vit (for MTHF gene mutation also discovered in blood test)
I am glad we have at least figured it out and our Dr (Dr Alarcio) is well versed on PANS and all of this. I am very worried and would love to know if there are and private parent groups in AZ or do people all talk on this board?
She has had ongoing issues with anxiety, ADD and frustrations for the last few years along with extreme frustration with writing. At first they said it was because she was highly gifted and then it was she has general anxiety and ADD you should try meds but go see this neurologist first to see if it could be biological instead of mental. The neurologist said her blood tests indicated she was fighting an infection and that the Herx indicated it was one that would qualify for PANS that it was impacting her brain and behavior and to hold off on pych meds. Is it possible that she has had it this whole time and it was gone into remission or was very light at times? She had a good 6-7 months in K 1.5 years ago and then it hit in 1st grade really bad -- got better and then she had strep and it got worse and then the herx made it REALLY bad (seriously crazy rage).
She had a really weird insect bite almost looked like the target tick bite but not red (was a bruise purple on outside and pink on inside and it started shooting down her arm towards hand with a purple line --Husband took her to urgent care and they said it could be insect or cactus but that it was infected so they gave her antibiotics but no follow up test -- It was so weird and was almost 5 years ago (she was almost 3). it could have been that or anything else I am just worried that she could have had this for that long and it won't ever go away due to being untreated. I just have so many questions and worries - thanks for letting me go on and on.
Thanks! - A
