Hello.
I thought I'd share our family story in case our own experience can help someone or perhaps suggestions in our treatment will result.
My DD12 was diagnosed with Lyme and Bartonella February of 2011 by a well-known pediatric LLMD. His primary symptoms at the time were back pain, stomach, joint pain & fatique. He was previously dxd with Fibromyalgia and CFS by MG Rheumy.
His treatment started on oral Azith, Minocycline and Tindamax. As expected, he got much worse adding muscle spasms and neuropsychiatric symptoms to his symptom list. These include regressive behavior, sensitivity to light, and a neuro-psych exam confirmed processing, attention and memory problems.
Over last summer, he was put on IV Rocephin and he seemed to be improving but our dd14 was was diagnosed with a positive WB with Lyme. Her symptoms were less obvious -- hip pain and headaches. Nothing I would have ever thought was Lyme if it wasn't for her brother.
In September, after attempting to go back to school, he had a terrible set-back. He was in extreme pain with what we thought were returning muscle spasm. He also had profound bouts of weakness, bizarre psychiatric symptoms etc. After a few trips to ER and finally back his Dr. he was dxd with Myoclonus and his labs also indicated low IGG. As a result, we started aggressive IVIG treatments.
The first couple of IVIG sent him back to the hospital but the few treatments thereafter seemed to help. His Myoclonus stopped (although he still has shaky hands) -- we have not seen the disabling weakness, his GI issues improved for awhile and we felt we were on the right path,
Unfortunately, we've hit a plateau or another setback.. He was exposed to Strep that was missed for awhile, We've added Amox to his cocktail and it's too early to tell but he seems to be improving.
My son has not been to school for the most part of a year. My daughter is still on orals but may be put on IV soon. She continues to go to school but has terrible back pain and cognitive problems but so far, we have not seen any auto-immune abnormalities.
I was also diagnosed and think that I may have passed it to the congenitally despite their healthy baby and toddler years. We live in a very endemic area and I grew up 10 miles from Lyme Ct.
I thought I'd get this out there. As I said, we're treating for Strep now -- he remains on Rocephin and orals and we have appts. next week week.
Thanks,
Jen
