18 yo M dx with AI CNS vasculitis that caused him to develop seizures. He has been on some sort of steroids since 3/2015. Prior to his seizures he had a severe case of herpes needing to be hospitalized and I have seen elevated IgG for CMV in past lab work. He is trying to wean off prednisone currently, he hasn’t been able to in the past as he would develop a seizure.
His gut is a mess, BMs 2 times a week on antibiotics 3 times a week. At what point do you support the immune system? How do you do that when he is so suppressed?
He was told at one point that he had a T cell deficiency. I have him on castor oil packs, fish oil (3000 mg), vitamin D, and VSL 3, gluten/casein free diet.
Dr. Anderson:
General ideas are here:
NRf2 / Brain on fire
When in a flare I do not use “immune stimulants” but do use modulators like mushrooms, curcumin, boswellia, LDN etc.
Often with steroid withdrawal seizures we use Pregnenolone (100-400 mg HS) and if possible a slow taper (with adrenal support) of an equivalent dose of hydrocortisone (4 to 1 with pred) etc.
