Frazzledmom said...
Rowingmom-- thanks for all the good information. We have checked my daughter for PANS/PANDAS as well and are waiting for the results. How long did it take you to get results for the MTHFR test? If that test comes back positive what do you do? Change how you detox or what? I know that sounds crazy. Our dr is treating my daughter for confections but we do not know specifically which ones she has. Are there protocols in Buhner's book that could be good for the unknown?
It took a month or so to get the MTHFR test back. We didn't do 23andMe, just MTHFR through LabCorp.
Supplementation with low doses of the methylated versions of B vitamins are usually used if the deletion is detected. Do not eat foods fortified with the synthetic versions. Be cautious when starting because if any of the methylation pathways have been blocked/down regulated, starting them up again can cause a herx.
www.mthfrsupport.com.au/folic-acid-5-mthf-treating-mthfr-deficiency/www.mthfrsupport.com.au/what-is-mthfr/K tested positive for bartonella and IND for lyme through Igenex. Her babesia tests returned negative. She improved by 80% with abx treatment for bartonella; the addition of malarone (a babs drug) to those abx didn't improve her beyond that point.
The addition of Buhner's CSA (cryptolepis/sida/alchornea) combination tincture produced results that malarone hadn't. What species of babesia, or babesia-like-organism she has, I do not know, and neither does our LLMD. But CSA worked where pharmaceuticals failed.
K was never tested for PANS/PANDAS but was clinically diagnosed by our ped psychologist here in Ontario, who refused to test because she said strep titers would be high because K had strep so often.
Our LLMD told me right away, on our initial consult, that K had bartonella and that it was totally responsible for her PANS/PANDAS symptoms and that they would resolve with bartonella treatment.
They did.
Be aware that if your child has PANS symptoms, that they will flare significantly with herxing. Enuresis, decreased fine motor skills/spatial awareness, emotional lability. All of it. Be ready.
If your daughter has vertigo, I would have her tested for babesia.
Post Edited (rowingmom) : 11/6/2015 9:15:07 AM (GMT-7)