Posted 7/12/2016 9:51 AM (GMT -6)
Here is K's timeline. Her PANS/PANDAS was caused by a bartonella infection. Our LLMD was very cognizant that this was a possibility and didn't seem concerned about treating lyme. She said that if we treated bartonella that her PANS would resolve and it did. K's frequent strep infections were likely due to the immunosuppressive properties of the lyme/bartonella/babesia bacteria she was chronically (and likely congenitally) infected with. If I was you I would test and treat for more than simply lyme. Lyme rarely if ever, travels alone.
I have just finished compiling my didactic notes for our LLMD. She will likely present that at an upcoming ILADS conference. If you would like a copy, respond to this thread and enable your e-mail and I will send them to you.
Born Sept 2001 – born with light / sound / touch sensitivity. Nursed and slept well, appeared healthy, accomplished first year milestones but with low percentile height and weight. All vaccinations received on schedule.
2002 - Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination. Self weaned at that time.
2004 – Diagnosed with ADHD, Sensory Processing Disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia. Private speech therapy recovered speech by 2007 using the PROMPT method.
2005 - Private OT to improve fine motor control.
2006 – Enters school system with IEP. Kindergarten accommodations include OT, PT, weighted vest, ear muffs.
2008 - MMR / DPT boosters (told by GP that the original regression was a coincidence) and insect bite (bruise-like rash). New symptoms include: motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.
2009 - School IEP re-evaluated to include removal from classroom for tests with EA available to redirect to task, seating behind a screen for in-class work to reduce sensory overload, more time allowed for testing, decreased work and test load, removal to remedial class for lunch with EA available to redirect to eating. Accompanied by EA to the washroom to prevent wandering.
2010 – Diagnosed with ADHD, Tourette’s, Asperger’s, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremities, chills and hot flashes, extreme fatigue, nightly fever.
June 2011 - Negative Canadian ELISA, Igenex PCR positive Bartonella henselae, Negative Babesia microti. Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR.
Multiple Abx, methyl B12, methylfolate, P-5-P, herbal homeopathic and supplement treatment by LLMD.
2012 – Vaccine exemptions acquired.
Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.
April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, GF/CF/SF, organic, pastured, Terry Wahls / PerfectHealthDiet . Minimize EMF exposure.
Sept 2013 - CD57 45.
Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.
Dec 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.
ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.
Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.
Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture, diatomaceous earth and psyllium husk.
Dec 2015 – To present. Symptom improvement to100% with removal of PUFA supplements (Cod Liver Oil, organic hemp oil). B+/A student in Grade 9, active in Celtic Dancing, curling, cycling, church Youth Group. Remains 1 year or so behind peers in ability to socially interact.