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Our visti today with Dr. B

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He confirms what Scott Smith told us. He said a severe case of PANDAS. He is going to try another abx. called ramiflex or somehting like that. Don't have the name in front of me. He gave us a Rx for the steroid burst, but we are hesitant becuase she gets so wild with so much. He is getting us ready for IVIG. Checking on insurance. He was kind and informative. He wants us to check for co-infections on the Ingenix test. I wonder why Dr. Beals did not have us do this. He is the Lyme expert. Just wondering...My gut tells me the IVIG is the way to go. This poor child has been so sick for soooo long.

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I am so glad today's appt was a step in the right direction.

Your girl reminds me of one of mine, and I will tell you- steroids did help her ALOT. For while atleast (months!) Sounds like you are heading in the right direction now. What a relief.

Been thinking about your appt today and so glad to hear about it. Any time frame on IVIG?

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I am so unsure of what to try. Everything seems to effect her in an opposite way, but I just have to keep trying since her life is non-existent. We are non-functioning family. She is sooooo soooo sick. I have 2 give her a chance, dontcha think. I am so afraid of causing her more harm. I am so numb over this.

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Hi All,

I am new to the Forum. I have seen Dr B and my daughter has been treated with IVIG, Steroid, long term ABX use, for co-infections related to Lyme, Lyme....she has had the Cunningham test...you name it..all of it. We see no improvement. This is not a stab at Dr B or any Dr for that matter, it's just how it is.


From what I understand, many Doctors DON'T test for coinfections because if you are being treated properly for Lyme it will catch the coinfections.


Good luck with all of this. It's a long, frustrataing journey. :(

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