Hello! I am looking for thoughts and advice from others who have children being treated for Lyme and co.
My 6 year old daughter is being treated by an llmd for congenital Lyme and Bart since 5/10. We started treating Bart last month but she didn't respond well at all to rifampin, and we stopped after 3 weeks.
She has a seizure disorder, along with developmental delays, and had a huge increase in seizures during the rifampin treatment. (rifampin does alter seizure med effects in body, so we were prepared, just not for how severe they were)
She was also very lethargic the first week which I am assuming was a herx. To complicate things, she doesn't talk (or walk) and can't tell me what hurts.
Due to the increased severity of her seizures the llmd stopped for now to let her settle down, which she has thankfully.
According to our llmd, the only other option is Cipro. I am very afraid of this since I read this can cause tendon issues and she can't tell me what hurts her.
I mentioned co-treatment with Dr. J and Dr. L is all for it thankfully. I did get some info from his office but put the idea on hold when I heard how much the 1st visit would be.
My daughter is worth every penny, don't get me wrong, I just wanted to get opinions first before I commit to a visit.
I know he is the best, but my doc did train with him. She loves my daughter, but I think the seizure episode frightened her. Because of my daughters complex issues, I would really love to have him on our team.
Has anyone else used him as a consult and if so do you know about what he charges just for that? (I forgot to ask)
Any other advice for me regarding anything I mentioned here? I am open to all suggestions!
Thanks so much!
Posted by jenn (Member # 21687) on :
pm sent
Posted by kgg (Member # 5867) on :
I believe that Levaquin is more of a tendon issue than Cipro.
According to the Betterhealthguy's ILADS notes, Magnesium and Alpha Lipoic Acid taken away from Quinolones may help tendon problems.
FWIW.
Hugs to you and your little one, Karen
Posted by Peyjad (Member # 23228) on :
Jenn -i tried to send PM but mailbox is full
Thanks also Karen for replying ...so Cipro CAN be but not as bad as Levaquin? Gosh I hope, it would make the decision much easier for me