A patient which I will only identify by the name of Ms. X, has provided me with her account of living with CFS, and how as a desperate measure she finally found a doctor that would prescribe her antiretrovirals. Ms. X is 36 years old, and has been living with CFS since age 24. She was once a very active person - having completed the Boston Marathon one year before coming down with CFS. It all started with flu like symptoms she states, but she never fully recover until... By age 25, she would endure malaise on a daily basis - seeing specialist after specialist - two rheumatologists, a sleep specialist, cardiologist. By age 28, she would struggle to work part-time. At age 31, she was admitted to a psychiatric hospital after becoming suicidal as a result of doctors giving her the runaround. It was at this time that she was diagnosed with CFS - and she began graded exercise therapy, which left her even more fatigued.
At the time the Mikovits et. al study came out, she had been unemployed for 3 years. At this time, she began to travel around the country looking for a doctor that would prescribe her antiretrovirals - most doctors were extremely relucatant, until she found one in San Francisco that treated HIV patients early in the epidemic. She was given a two drug combination - Isentress (Raltegravir), and Viread (Tenofovir). Initially, she felt worse (Fever, chills, cough), and almost stopped taking the drugs, but after 21 days began a rapid and sustained improvement. After 3 months, she no longer experienced any musculoskeletal pain, nor any post-exertional malaise, she would return to work full time by 4 months - and currently is capable of exercising 1 hour per day. For her, the monthly cost of the combo treatment comes to a staggering $1500 a month - something she could not afford on her own, nor would any HMO or drug plan want anything to do with it - luckily for help from her family.