Informing PANDAS dr and Cunninham of Lyme Dx

[Bill]

Bill - I am curious if Dr. L answered that question. It makes no sense that one infection could cause these types of symptoms but not another. Based on our experience they can all cause trouble in some! The treatment does need to be tailored to the bug though.

 

 

This was back in August 2010. I do not recall her specific response though I recall her considering what I said (What I like about her!). As someone else echoed, I get the impression that she feels Lyme is out of her realm of experience to some degree. She did not actively search for Lyme (& friends) though. I brought that up and then followed up with another doctor for the Igenex testing after the standard testing she ordered came back negative. Not faulting her. We are all learning and like everyone else on this board, I spend considerable time searching for answers for just my son. I have great confidence that she will continue to broaden her scope over time. BTW - she recommended we see Dr. J. when she saw the Igenex results.

 

What I am really confused about is why there are not more immunologist involved in this. Fundamentally, all of these come down to (my 2 cents only) the immune system not performing correctly or just being overwhelmed. We talked to our standard allergy/immunologist (two) and neither had any knowledge of these issues nor could recommend anyone.

 

bill

[pixiesmommy]

D- you read my mind (as usual!) I was just talking with Dr P yesterday about how I should let Dr Cunningham know Pixie is absolutely positive for Lyme. Does anyone have Kathy's email address and can you please PM it to me? I am sure I have our correspondence somewhere and could find it, but I have yahoo email and it lives up to its name when it comes to searching.

 

 

FWIW, we have not let Dr. K know because he was extremely discouraging/dismissive about testing and pursuing anything outside the realm of PANDAS when we have brought those things to him in the past.