The last 11 years he has feverently sought a treatment for his diseases and taken on daily tasks with the help of pain medication. Due to this country’s stance on pain medication Williams has been taken away along with his quality of life. The pain medications were decreased and his pain increased and the disease spread. Since June he has been hospitalized three times for weeks stay at a time for failure to thrive and adrenal crisis. He can no longer walk on his crutches due to the shoulder separation and osteoporosis. Every step is painful as are his in bed yoga stretches. His pain gets so high his adrenals burn through the cortisol and his blood pressure get extremely low. This cycle continues. The doctors lower his pain medications. His last visit at Cedar Sinai Hospital they did plasmapheris. We will continue this treatment once a week in hope that the antibody causing his pain receptor to go off will cease and to repair his neuro fibers.
William knows the only treatment to put him in remission is high dose ketamine protocol which would reset the MDA receptor in the brain. Dr. Scwartzman out of Drexel University has extensive research on this protocol. William had only four days of this protocol five years ago and went into remission. The treatment was on a federal trial and was not completed or followed through with boosters.
William needs your help to fight. The prescriptions have gotten costly, a moterized wheelchair is needed for stability and independence. The high dose ketamine is only offered on a cash bases and is not covered by insurance. Dr. Prauger out of UCLA is 60,000 for his protocol. There are others out of state still at a high cash rate.
Right now William fights every minute of the pain and the symptoms. He has acquired an amazing team of doctors at Cedar Sinai but some can’t follow him out patient. The insurance made it clear they do not want him in the hospital. William is fighting the pain every minute trying to reserve his cortisol so as not to go into adrenal crisis. He is at home fighting for the chance to have a time he feels no pain and can enjoy a simple moment of life.