Posted 6/17/2015 9:28 AM (GMT -6)
Here is K's complete timeline, taken from the ACN PANS/PANDAS/Lyme forum where I post as rowingmom as well:
DD13 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.
2008 - MMR booster and insect bite (bruise-like rash) - 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.
2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.
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 extremeties, chills and hot flashes, extreme fatigue, nightly fever.
2011 - Igenex PCR positive bartonella, Negative ELISA, 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 treatment with LLMD.
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, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing 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.
Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.
Dec 2013 - 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 to Present - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%
Raging was definitely one of her symptoms, and was turned mostly towards herself. She had a very low tolerance for frustration and if she was incapable of doing something she would hit herself and scream.
If you take a look at the PANS/PANDAS forum, you will find that all of these symptoms - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function - are indicative of PANDAS (Pediatric Autoimmune Neurological Disease Associated with Strep) and PANS (Pediatric Autoimmune Neurological Syndrome - triggered by infections other than strep).
Because we live in Canada, the routine PANDAS treatment (IVIG) was not available to us and we were unable to purchase them privately. But by perusing the ACN forum I figured out that many PANDAS symptoms looked like the symptoms of the children who had lyme infections. So I did the next best thing and found an LLMD close to us, but in the US. We paid out of pocket for everything; testing, Dr visits, abx etc. It cost us close to the equivalent of a University degree, but was worth every penny, because now K has a chance to do just that, whereas before she was quite compromised.
Our LLMD immediately clinically diagnosed bartonella and told me that if we were able to get a handle on that infection, her symptoms would resolve. Igenex testing confirmed bartonella and lyme, but we only treated the bartonella infection with the LLMD. I am now treating her on my own (herbally) for babesia as well.
Raging is a very common symptom of bartonella, as are many other psychiatric issues:
Neurological Manifestations of Bartonellosis in Immunocompetent
Patients: A Composite of Reports from 2005–2012
E. B. Breitschwerdt,1 S. Sontakke,1,2 and S. Hopkins3
13 yo daughter:
2010 - Dx ADHD, Tourette’s, Aspergers, motor delay, PANS/PANDAS
June 2011 - Igenex PCR positive bartonella, IND lyme. CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, herbals/homeopathics
April 2013 - ANA titers negative. Weaned abx. Start Buhner bartonella protocol, methylation/detox protocols, organic PerfectHealthDiet gf/cf/sf. Minimize EMF exposure
Nov 2013 – Clinical babesia diagnosis. Start Buhner babesia protocol
Sept 2014 – Symptoms 99% resolved