Help Otto With Lyme/PANS Treatment

Our son, Otto, came home from school with extreme ear and facial pain on November 7, 2013.  He never returned to school.  For the past 20 months Otto has been deteriorating before our and his younger brother's eyes.  After seeing specialists all up and down the east Coast, including every specialist you can imagine at Children's Hospital of Philadelphia, Nemours, Jefferson University Hospital, Pennsylvania Hospital, etc., we were unable to get a specific diagnosis.  He was diagnosed with Trigeminal Neuralgia (by Dr. Lee at Pennsylvania Hospital) and had brain surgery in March of 2014.  It was not Trigeminal Neuralgia.  Insurance covered that surgery, but have told us they will not cover his current diagnosis treatment as it is "experimental". We saw independent specialists in Florida, New Jersey, Washington D.C. and Harleysville, PA.  Last summer (2014), we finally got a blood work-up that confirmed co-infectious Lyme disease (Bartonella is the co-infector).  After months of antibiotics, anti-anxiety medication and anti-seizure medication, he was not improving at all.  It was actually the opposite. He was diagnosed by Dr. Souhell Najjar who has offices in Staten Island, NY and Lennox Hospital in Manhattan (See book "Brain on Fire") in December of 2014 with PANS (similar to PANDAS but with a different bacterial infection causing the syndrome - PANDAS is based on the strept bacteria while PANS can be caused by other bacteria.  In Otto's case, it is Bartonella).  Dr. Najjar prescribed Ivig treatment for Otto (Sub-cutaneaous Immunoglobulin transfusion).  Our insurance company has denied pre-certification for his treatment.  After our first appeal was denied, we tried a second appeal, which was absolutely compelling, but they have also denied our second appeal.  Due to his deteriorating state (loss of appetite, extreme anxiety, cognitive disconnect, paranoia and aggression), we have started his treatment out of pocket.  We have spent well over $46,000 so far on specialists and the beginning of treatment. We will file a third and final appeal, but we are not optimistic of a turn-over of denial.  Any and all help would be much appreciated.  Otto is a gifted child who just turned 14.  He is engaging, full of potential, lovely and witty.  He is missing some very important developmental and socially crucial years due to this syndrome. Please spread the word.  Thousands of families are in a similar situation.  We must get Lyme Disease, PANDAS and PANS recognized as REAL Diseases/Syndromes.