@cummings3
I have had this awful disease since I was about 10. I am 58. Diagnosed at about 48. Had lump removed at 30 & they assumed it was cancer, but it was Histiocytosis. Read if u have CAEBV, u will get Histio. My saviors are Tramadol, a daily Acyclovir & Triple-Antibiotic. My flare ups have dwindled to 3 days in bed occasionally if I overdo it. One leg is now shorter & I have had tons of cortisone shots. I put Triple-Antibiotic salve in my nose with a q-tip when going out & don’t get sick anymore! (I got a cold/bronchitis every month b4 this). My partner has cancer & also doesn’t get sick anymore by using it! I have “shocks” in different parts of my body now, localized pain still & cold sores here & there. I am still suffering way too much still & use a scooter, so wanted to see what others do & wanted to share my tmts. I had to come to terms with my limitations, eat healthy & rest often. One dr gave me Presnisone (5-10mg) for vacations & it worked super, but drs all said it will just make things worse. Hoping this can help you all! Teach ur brain that this is ur new normal & just live the best u can!