Posted 2/27/2012 6:03 PM (GMT 0)
I am new posting on this forum, but have been reading here for a while. I have mostly been posting on the ACN lyme forum trying to figure out the lyme/bartonella/PITANDS mess that my 10 yo daughter finds herself in.
The LLMD thinks that my daughter may have congenital lyme (something else to wrap my head around). I have had some symptoms for about 6 years now but doctors chalked them up to peri-menopause. Bio-identical progesterone helped me immensely but after learning more about lyme I began a couple of herbal protocols (Buhner and Byron-White), went through some herxes with symptoms I have never experienced before - sensitive skin, and floaters with a return of myalgia/arthralgia. I feel much better now with some sense of calm. I have just started with a low dose parasite protocol - we'll see what happens.
My daughter was born very sensitive to sound, light and touch. She would scream every minute we were travelling in the car. She had gross motor difficulties, and lost all of her speech milestones after her 15 month MMR vaccine (another insult to her compromised immune system?), and was diagnosed with oral apraxia. She was socially delayed and could not interact properly with her peers. After 3 years of private speech therapy, OT, PT she was functioning fairly well, but still had troubles with concentration, emotional lability and rages (often hurting herself), was Dx with ADHD and Aspergers. Despite all of this she has a wonderful memory and taught herself to read at age 2 by watching the words I would read to her from children’s books. She learned to play the piano by memory, and it was only after 2 years of lessons that the teacher figured out that she couldn’t read the notes.
In 2008 she developed an atypical rash (I inch diameter, red border, no migration) from a bite received at the cottage and motor/vocal tics started 3 weeks after, with exacerbations to strep and then viral infections as well (then Dx PANDAS). In Jan 2011 she suddenly developed the pain symptoms that I now realize are caused by Bartonella: bone pains, headache, GI issues (cyclic diahrrea and stomach pain) etc. All of her symptoms would disappear each time she was given Abx for strep, only to return a few days after stopping the treatment.
She is now on biaxin/rifampin/A-Bart/A-L/cat's claw/japanese knotweed and of course probiotics, detox baths/supplements.
She is so much better now. Her motor/vocal tics have resolved (after a blip when we discontinued rifampin, but then restarted - quit too soon). Her pain and fatigue have gone. She is a wonderful, happy child, no rages, improved executive functioning. I hope at some point that we can eliminate the Abx and continue with alternative protocols. I see a few of you here have had luck with that.