Posted 8/5/2015 1:52 PM (GMT 0)
PANDAS syndrome is caused by strep infection. PANS syndrome can be caused by any number of organisms including bacteria (bartonella, mycoplasma, lyme etc), protozoa and viruses. So I'm not sure which tests you had run. Testing for all the lyme coinfections can be quite extensive.
Having improperly treated lyme and coinfections can supress immune response resulting in overgrowth of strep. This happened in our daughter's case.
Originally assumed by our pediatric psychologist to have PANDAS because autoimmune symptoms flared with strep infection, but unable to acquire IVIG treatment (we live in Canada and could not afford out-of-pocket IVIG in the US), we began investigating lyme/co and found otherwise.
K's PANS symptoms were caused by bartonella and asymptomatic, negative testing babesia. After 2 years of treatment for bartonella and gaining 80% improvement she was released by our LLMD.
I then set out treating herbally (Buhner) and was able to maintain her at 80% for 8 months. The addition of Buhner's babesia herbal combination CSA resulted in babesia herxing (air hunger, chest pressure, sighing, dry cough, thigh pain) as well as resolution of her remaining bartonella and PANS symptoms.
She is currently 100% asymptomatic and her PANS has completely resolved.
In my opinion IVIG will do nothing but help relieve symptoms by diluting the offending antibodies if infection remains ongoing. As the IVIG is processed out of the body, symptoms will return because the bacteria/protozoa are still present and the body will return to producing antibodies against those infections once more.
Again, in my opinion (and Buhner's as well), autoimmune disease is not caused by the body attacking itself, it is the body's attempt at eradicating intercellular infection and the resulting inflammation that is the problem. Take care of the infection and the inflammation caused by immune response will dissipate.
Here is her timeline:
DD13 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, SPD (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.
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 extremeties, chills and hot flashes, extreme fatigue, nightly fever.
June 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 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%