UGH! PLEASE HELP ME MAKE SENSE OF IT!

[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, and that wont sleep all night long. I just need direction.

[momaine]

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, and that wont sleep all night long. I just need direction.

Wilma,

There are more than one drug that can eradicate both lyme and bartonella. My dd and I are both being treated for lyme and bart and we are both on different medications. I think you really need to find a lyme doctor and a pandas doctor that you trust and that are willing to work together and then put your trust in them helping your daughter. For sure, double check everything that they put her on, and ask lots of questions, but trust is important.

 

My dd and I have different lyme doctors who are treating us differently, but both courses of treatment can eradicate the diseases and I trust both doctors. If one can't tolerate one drug, thankfully there are other options. Right now I'm struggling with stomach issues and I'm not sure if it is a bug I've caught or from the antibiotics. And I'm herxing on top of that with brain fog and fatigue. Ugh!

 

Didn't I read that you were going to take your dd to Dr. J? Have you been yet?

[aidansmom]

I had a similar experience. I went to the PANDAS doctor first and then found out we were dealing with Lyme (IGenex IGG positive). Our LLMD also thinks we are also dealing with Bartonella even though testing came out negative - based on his symptoms.

 

At first the PANDAS doctor (same one as yours I believe) prescribed an antibiotic based on the IGenex outcome but for me personally I felt that dealing with both a LLMD and a PANDAS doctor was going to be too confusing. Many people keep the PANDAS doctor in the loop also and that is OK if that is what you feel is best. (Perhaps someone who is doing this can step in and give their point of view.) From my research and when I put everything together I thought that Lyme/bartonella was the overriding issue that is messing my son up and therefore I needed to let the LLMD be the primary person who treats. Lyme and Bartonella are very tricky to treat especially when they most likely have had it for a long time - likely since birth for Aidan and it sounds similar for your child.

 

When I have read your posts for a while I had often thought that Lyme and Bartonella was a possibility for you even before you got the test results. I guess I saw a lot of Aidan in your description of your child. I know how hard it is. You are doing such a great job.

 

Just to note Aidan had a CamK of 159 and also has had high ASO and antidnase and history of strep throat with behavioral changes. I know that your child had a high cam K but did she ever test positive for strep or have high ASO or antidnase? Our LLMD did acknowledged the PANDAS diagnosis and the Cam K number so perhaps if you feel the PANDAS part is really important than you can go to a LLMD who is versed in it also.

[kferricks]

Have you tried the meds that the Pandas doc gave for the lyme? My daughter is both Pandas & Lyme. I used what the Pandas doc gave until we got to the lyme doc. From here I am dealing strictly with the Lyme until it is gone. Once that is all under control, I will deal with the Pandas doc. But since you already have a lyme doc telling you to use the L, I would stick with that person until you got to Dr.J.

That being said, I do email my Pandas doc to keep him in the loop because I feel it is important for everyone to learn as much as they can about Lyme.