The best advice I can provide is that you and your doctors seek consultation with a group of physicians who have engaged in research and reported on their experience with this disease. One such group is at the
Johns Hopkins Medical Center in Baltimore. Contact information follows.
Orden, Roy Anthony. Timble, Hersha. Saini, Sarbjit S.
Johns Hopkins Bayview Medical Center, Baltimore, Maryland., Division of Allergy and Clinical Immunology, Johns Hopkins School of Medicine, Baltimore, Maryland.