Our daughter was diagnosed with Asperger's, Tourette's, ADHD, motor delay and probable PANDAS (exacerbated by strep) by our pediatric psychologist in 2010. Her Canadian ELISA was negative, but we continued with Igenex WB and coinfections testing with an LLMD in Buffalo NY. Her WB was IND for 39kDa and not much else. She was highly positive for bartonella though. The LLMD said her PANS was caused by the bartonella infection, which it was.
She would have PANS flares with every infection (viral or bacterial). During periods of fever however her symptoms would resolve for a short time, only to reoccur after the fever had passed.
After 2 years of abx treatment for bartonella she had improved approximately 80%. After another year of herbal treatment (which I am doing myself in consultation with Stephen Buhner's associate Julie McIntyre) using the full bartonella protocol (with the addition of several herbs from the babesia protocol), our daughter is approx. 99%. Tourette's, Asperger's and the full compliment of PANS symptoms (every one) have resolved.
I found our daughter's Tourette's/PANS symptoms were the result of her bartonella infection, while the Asperger's was caused by some unknown species of protozoan. She had good improvement with cognitive/executive function on malarone, but it wasn't until we trialed the babesia herbs that she had a babesia herx (air hunger, sighing, chest pressure, dry cough) and the LLMD clinically diagnosed her with babesia - she had previously tested negative for both babesias and was otherwise asymptomatic except for her cognitive/executive function difficulties.
I continue trialing herbs, and if I increase the babesia protocol too much she will herx a bit (problems concentrating mostly), but otherwise she is perfect. Helpful, happy, no problems with executive function, math or writing.
No ticcing, no ASD, no raging, no frustration, no urinary frequency, no OCD, no bone pain, no dizziness, no tingling, no headache, no hot flashes/cold flashes, no night sweats, no insomnia, no loss of motor control, no ADHD, no fatigue. She is just GREAT!
I post as rowingmom on the ACN PANS/PANDAS/Lyme forum as well. If you want to see what we have been through please search the archives there.
2010 - Dx ADHD, Tourette’s, Aspergers, motor delay, symptoms of PANS/PANDAS autoimmune neurological syndrome.
Jan 2011 – bartonella pain symptoms begin.
June 2011 - Igenex PCR positive bartonella, IND lyme. CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, herbal, homeopathic treatment.
April 2013 - Weaned from abx treatment. Continuing wth Buhner, methylation/detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure
April 2014 – Symptoms 99% resolved. ANA titers negative. Mainstream classroom, no accommodations, B+/A student.
Post Edited (rowingmom) : 8/27/2014 8:44:23 PM (GMT-6)