Serious nerves flare in my 7yo

[Rhnv14]

Hello everyone, 

 

Reading this forum for over a year, but this is the first time I'm trying to share my case and maybe find a good advise or analysis.

 

My girl D is 7 years old. She is diagnosed with Lyme and Bartonella for 14 months, but we all understand the disease was there even 2-3 earlier. She's diagnosed and went thro 12 months of ABX and 3 Ivig treatments, none of them have improved her but kept her on a gentle status que. Her only symptom was motor tics, and very light vocal tics. And we thought we're handling the situation.

 

In the last few weeks sh'es under a nerve attack. Started with serious motor tics, full body, then she was hurt with a loss of knee reflex, and as of few hours ago she developed a super loud - somewhat chilling - scream tic.

 

We're both with an immunologist and in the last couple of weeks a neurologist who believes she has a neurological lyme where only parenteral ABX can do the work. However, I'm not sure my kid would agree to do an MRI, which is probably needed.

My Qs:

1) do you have a familiar case of tics only onset and a lyme that was attacking the nerves system only?

2) did you have any success in getting your kid to do an MRI? And if yes, how so?
3) did you try parenteral ABX that did much better than oral ones?

Super appreciative for any help. We're in a tough condition as a family.

Thank you!

[HopeinHIM]

Hi

I cant say that IV anti B will or won't help. I can say that our DS had both Bart and Pans.  WE treated the Bart with three different anti B's for 3 months. But his gut took it hard and fatigue and disbioses set in creating many of the same PANS like symptoms. His nervous system only began to truly calm down (after 3 years) with specific vitamins ( organic urine test and 23 & Me test helped decide which) and diet changes.  We removed gluten dairy and soy products.  Dr  H Jnouchi believes that many of these children have innate immune responses to certain food proteins. These response can cause neurological symptoms.   Once her nervous system calms her tics should too. I avoided diet changes for years bc it was just too daunting to do with him.  He finally did it himself and says his brain is finally calm.  It took 3 months before I began to see changes. The two tests i mentioned showed that he needed B1 and zinc. we also dbl up on fish oils and specific pro biotics.  There is NO one panacea. Its a multi prong approach.  Those two tests will help you as you navigate.  A good nutritionist MD can order them.  The gut was the answer to calm my son.  The terrain of your child will dictates how her body responds to Lyme/Pans.  Read all you can on this site and don't get overwhelmed .  It will take some getting use to because everyone seems to know so much but eventually you too will pick up.  Quality sleep, nutrition and healthy daily bm's are very important as well.  I prayed continuously because i needed super natural strength. God guided and we followed.  Don't give up bc you are NOT alone!!!!!! 

Edited June 13, 2017 by HopeinHIM