NEED ADVICE PLEASE

[Wilma Jenks]

The PANDA Specialist said she has PANDAS, then he tests for co-infections and said she is possitive for Bartonella. He prescribes bactrim and biaxin. I then call the Lyme specialist we had gone to a couple of months ago.... and he said no,put her on levaquin, because it targets the bartonella better. I want to tell the PANDAS doctor this, but i have a tough time getting him on the phone. Is levaquin better than the other two. Please tell me your experience. The Lyme specialist also said my girls odd symptoms sound like PANDAS, and the PANDA specialist said her wierd symptoms sound like Lyme. I have this girl with severe OCD, distorted thinking that TRULY does not get tired. The Lyme specialist said try treating her for Bartonella, and if that does not work, put her in psych. hospital. I would like to try the IVIG b4 that, but I am concerned about doing IVIG if there is a co-infection.

[PhillyPA]

Anytime a specialist recommends a psych hospital, I would find a new specialist. The only thing a psych hospital will do is make deterioration come faster. I know this is hard but keep plugging away. Sometimes you can't find all of the answers in a day, week,month or year. Take it one step at a time. You could have her tested for Bart. at several different labs and see if you get the same result. You could treat her for the Bart. and then go for the ivig. Fight one battle at a time and take a deep breath. One step and one day at a time. Find a specialist who is supportive and hopeful.

[JJMom39]

Wilma, I can't help with the abx, but I agree with what Philly said about finding a new Lyme specialist since his/her advice is a psych hospital if treating your dd for Bartonella does not work. A psych hospital is not going to treat Bartonella or the other things she is struggling with. Since you are happy with your PANDAS specialist (at least I think you are) what about finding an LLMD who would be willing to consult with/communicate with him? It seems like some type of coordinated treatment will be necessary, or at least one specialist needs to be making treatment decisions, ideally with the knowledge and support of the other specialist. Having two specialists who contradict each other is going to make it very difficult for you to know what to try, what to do. I know you have a hard time reaching the PANDAS specialist--have you tried faxing a list of questions to the office and requesting a fax or email or call back? Sometimes getting a succinct list in front of someone can help with getting a response. Ask him for an LLMD recommendation. Treating the Bartonella first makes sense to me but my child does not have Lyme or co-infections so that is above my level of knowledge.