OMG, please help

[ShaesMom]

Don't know what Dr T's stand is on Lyme but be aware that your Ped will likely look at you like are crazy if you mention chronic long term lyme especially if your son never had a bullseye rash. You're going to have to be the driving force behind this possible dx and seek answers yourself.

 

Can you get a copy of that Lyme test you had done on yourself?

[jenbug]

Yeah, I am going to get copies of all my stuff and the kids'. I agree with the me being the driving force, as it seems most docs here don't even want to or have time to try to look into this other stuff, which is unfortunate.

[mama2alex]

Be aware that Dr. T uses the CDC criteria to rule out Lyme, and believes it is very rare in PANDAS kids. Since so many kids from this forum have tested positive and/or been clinically diagnosed with Lyme, I'm not sure he's right about that. You can read his opinion on Lyme and PANDAS as stated on the PANDAS Network website under "Diagnostic Tests," "Immunological Workup," then click on "Lyme Testing Remarks." Lyme is a clinical diagnosis, just like PANDAS, so I don't really understand using the CDC's surveillance criteria to diagnose it in kids who have many of the symptoms.

 

If you want to understand the history and politics behind the CDC's testing criteria, a good book is Pamela Winetraub's "Cure Unknown: Inside the Lyme Epidemic."