Here is our daughter's (K's) timeline. She is now 14, her psychiatric symptoms started in 2008 (after her MMR booster) and her physical symptoms started in early 2011 (age 9):
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 to 100% 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.
K's psych symptoms were the result of PANS (Pediatric Autoimmune Neurological Syndrome - caused by organisms other than strep (in her case bartonella which is a very common coinfection of lyme)) and not PANDAS which is caused by strep.
Mainstream doctors are beginning to recognise PANDAS, but rarely understand that the same symptoms of brain inflammation can be caused by infections like bartonella, babesia, mycoplasma and viruses.
A negative PANDAS test does not rule out PANS. A negative lyme test does not rule out any of the coinfections (bartonella, babesia, ehrlichia, rickettsia, RMSF, mycoplasma and others), which may occur along with lyme infection or which may be stand-alone infections as well.
Mainstream medicine also does not recognise that when immune function is compromised by infections like lyme, that the other coinfections (which are generally self-limiting) can become chronic and must be treated differently than acute infection.
The infections will need a longer term of treatment, and immune response must be supported and brought back online to address persistent bacteria/viruses/yeasts or relapse will result.
K's initial blood work was also relatively normal. Nothing that would raise a red flag flag for our PCP. Her only abnormal result was the ANA - speckled type which is indicative of collagen damage. In my opinion the damage was actually caused by lyme spirochetes which have an affinity for/parasitise joint and ligament tissues. When her antibiotic treatment (for bartonella, with some very minor treatment for babesia) was finished, her ANA results became negative, likely because lyme was addressed by the same antibiotics.
It wasn't until I found a LLMD (with an ILADS recommendation) that I was told her symptoms were due to a bartonella infection (tested through Igenex) and that when the infection had resolved, the PANS symptoms would as well. They did.
As for leg pain, K had both types. Long bone (shin, forearm) pain is frequently a symptom of bartonella (because it infects bone marrow). Large muscle pain is a symptom of babesia (as is extreme fatigue) because infected RBC result in a lack of oxygen getting to muscle tissue.
For more information on PANS/PANDAS go to:
latitudes.org/forums/index.php?showforum=17,
although much of the treatment espoused there includes immunosuppression (which of course helps the symptoms but does nothing to treat the cause), which I do not necessarily agree with.
Please try to find a LLMD in your area who can diagnose your daughter. Our daughter recovered and yours will too. Take care.