Not sure if there is any help for my child.

[MamaOnAMission]

When she is on the bactrim and minocycline for bartonella, she is so much more locked in her own little world. Just stuck on one TV show all day long. The one thing she's able to do is shower and brush her teeth though. When i back down on these antibiotics...she is not able to get herself dressed or brush teeth. She said when she tries....her brain just turns off (her words.) This turning off of the brain happens with any kind of school work too. Anyway....she is on prozac, and it helps with severe OCD, but she is not able to brush her teeth or shower, until I up the antibiotics.

 

I think she has two things going on here. I think the OCD looks a bit better on the prozac, but she needs something else to help with the confusion and not being able to shower, brush teeth or do any kind of learning. I know this is a very scrambled letter. Just tired. Please give me any advice you can give. She is also very mean on Abx. and it never gets better. She is on them for 5 month now.

[LNN]

There is always hope. It's just that there's this key chain with 100 keys on it and you have to find the right one to unlock your child - and you may need more than one key. Very, very frustrating, but not hopeless.

 

What has your doctor said about her lack of progress? Is he an ILADS LLMD or a general practitioner?

[mdmom]

My DS14 has Lyme, Bartonella, Babesia and PANDAS. He went undiagnosed for at least 10 years. We have worked with an LLMD for 1 year now. After 9 months on oral meds, we switched to IV treatments. He is showing more improvement on the IV meds. His main symptoms are pyschiatric - debilitating OCD, anxiety - both of these have led to social issues as well. Would your doc consider IV moving to IV?

[Fixit]

My DS14 has Lyme, Bartonella, Babesia and PANDAS. He went undiagnosed for at least 10 years. We have worked with an LLMD for 1 year now. After 9 months on oral meds, we switched to IV treatments. He is showing more improvement on the IV meds. His main symptoms are pyschiatric - debilitating OCD, anxiety - both of these have led to social issues as well. Would your doc consider IV moving to IV?

 

with the iv abx you shouldn't get gut issues right...or not as many gut issues

just curious, does your son herx with the iv abx? is there a patern to getting the iv and any ramp in symptoms?

[MamaOnAMission]

Im having a really hard time communication with our LLMD. He is tops in the lyme feild, I am a bit frustrated. Super nice person though. I need to move on, but I spent a small fortune with this person. He thought her severe symptoms were bartonella, but she was not getting better on the bactrim and mino. At the first meeting he said that is wasn't PANDAS. Now, he wonders if it IS PANDAS. The bactim and mino, helped a bit with SEVERE sleep issues (a little), but mades her mean and it never lets up. We had to get some kind of relief for OCD. It was super super bad. She is on prozac along with bactrim and mino. Not sure if Abx. are hleping at all but I don't want to take her off just yet, in case this really is bartonella causing all of those wierd psychiatric symptoms. It's just crazy. This beautiful child can't eat, dress or play, because of this stupid sickness. She looks so normal on the outside, but her brain is one big mess.