New Mom trying to figure this all out!

[marajo]

Hi there! My son was just diagnosed with PANS. His was not an acute onset though and it seems like everything that I read says it is always acute onset.

As far as I can start to settle out from what the doctor said, my son has a low auto immune system- his IGM levels are low and he has a microplasma infection. His screener tested positive for Lyme but the doctor said that the hospital will send it out for further testing regarding the Lyme issue. He was put on Biaxin 2x a day with Culturelle between. Does this sound right to others?

Any suggestions on how to explain this to my friends/family/summer camp in an easy to understand way?

Any other suggestions and anyone else out there whose child didn't have an acute onset. My son is 12 and we have been dealing with all these issues for years now (mood swings, tics, sleep issues, stomach pains, hyperactivity).

Thank you!

[Dedee]

Welcome to the forum. You are in the right place. You need to come and join us in the PANS/PANDAS forum. Many of the folks there have kids with lyme and Mycoplasma. My daughter did not have the traditional acute onset. She is being treated for Mycoplasma / Lyme / Bartonella. She has been symptomatic since she was a toddler but it got extremely bad two years ago. That was when we got testing and started treatment. Biaxin will help but the best thing you can do is to find an LLMD (Lymd literate MD). These physicians are the only ones who truly know how to treat Lyme and the co-infections. My daughter did not start to improve until we started combination antibiotic therapy with the help of an LLMD. Most physicians really do not understand the complexities of Lyme and it's co-infections. If you come to the board many can offer you help and suggestions based on what area you live in for a physician. It is a wonderful, supportive group. This is a very hard road for families. Another suggestion is to get the book "Lyme Co Infections" by Bruhner. Our LLMD suggested we read it. It talks all about Mycoplasma and Bartonella. It is a wonderful book. We are using some of the supplements mentioned in the book and it has really helped. Hope to see you on the other board soon.

 

Dedee