Has anyone only gotten worse with IVIG

[kimballot]

Kimballot, how exactly are you dealing with the Lyme and how long were you told that Lyme treatment would take??

 

However, when we put him on a "lyme challenge" protocol prior to a round of testing (flagyl & Doxicycline), we saw an improvement in his OCD symptoms and more energy, and his CD57 was low, which can be indicative of lyme (CD 57 is not reliable in kids, but he is 14 and adult sized- so we took this into consideration).

 

Yes, it is so hard to say, esp. since flagyl and doxycycline are both anti-inflammatory so in theory, would have helped PANDAS.

 

 

Yes.... I can't say for sure WHY he is doing better I am just grateful that he IS doing better. We had several PANDAS docs, a lyme doc and the pediatrician all agree that he needed to stay on antibiotics for an extended period of time - as long as we are doing that why not play around and find the combination that seems to work best? Is it because we are killing lyme? Perhaps - that may be why he herxes with tindamax.... is it due to antiinflammatory properties? Perhaps - if so I am glad we found the right combination... is it because it is killing off some other infection yet to be named? That is also possible.... 12 years ago when I told the ENT that my son's behavior was out of control whenever he went off antibiotics we had no name for the condition... but it was real and the antibiotics helped. Now- a decade plus later we are beginning to understand the disorder.