Postcards from three HIVers’ treatment holiday:
Monica Johnson, 37
Columbia, Louisiana
Volunteer CEO, HEROES
Currently ON meds
VITAL STATS
Diagnosed: 1989
Before HAART: 700 CD4s, viral load unknown
Before break: Combivir and Crixivan; 650 CD4s, undetectable viral load
Length of break: 1 year
Before restarting meds: 650 CD4s; 80,000 viral load
Current combo and stats: Combivir and Sustiva; 902 CD4s, undetectable viral load
Took a break because: I was tired of being on the drugs. Plus, I found out that I probably shouldn’t have started at all, given my high CD4 count.
How she spent vacation: I did nothing special, other than getting blood work every two months.
Back on meds because: Neither I nor my doctor were aware of the latest facts about STIs, and my doctor started freaking out when my viral load hit 10,000.
How she’s doing: Fine. I’ve switched drugs due to kidney problems. I’m glad to be on a twice-daily regimen now.
P.S.: Before my break, I thought I could probably take one, but no one would listen. Then I met a doctor who told me to try it. Finally finding someone with initials after her name who agreed gave me the courage.
Scott Williams, 34
New York City
Associate editor in chief, Academic Physician and Scientist
Currently OFF meds
VITAL STATS
Diagnosed: 1995
Before HAART: 400 CD4s, 3,000 viral load
Before break: Viracept, d4T, ddI and hydroxyurea; 400 CD4s, 3,000 viral load
Length of break: three years and counting
Current stats: 520 CD4s, 10,000 viral load
Took a break because: I was feeling shitty between liver toxicity, neuropathy, Viracept runs and lipoatrophy in my face and legs. But even before these symptoms, I was contemplating giving my body a rest, and my doctor agreed.
How he spent vacation: I’ve taken some workshops in Reiki, a form of hands-on healing. A year ago, I quit my Madison Avenue job, which was too stressful. Now I have a saner 9-to-5 job.
Not back on meds because: 9/11 said to me there’s so much in life that we have no control over. I’m not in denial— I’m just not willing to live by my lab numbers anymore.
How he’s doing: Soon after quitting the drugs, all the side effects resolved—except that my lipoatrophy has not reversed.
P.S.: It’s incredibly liberating not to be on the drugs—your life isn’t constantly run by a pill-taking schedule, and it’s wonderful not to have the eating restrictions. I’d encourage people not to hop on the drugs too soon—they’re just too toxic.
Fred B., 41
New York City
Acupuncturist
Currently ON meds
VITAL STATS
Diagnosed: 1985
Before HAART: 0 CD4s, 3 million viral load
Before break: Kaletra, Ziagen, 3TC and d4T; 280 CD4s, 4,000 viral load
Length of break: Three months
Before restarting meds: 70 CD4s; 100,000 viral load
Current combo and stats: Kaletra, Ziagen, 3TC and d4T; 260 CD4s, 86 viral load
Took a break because: I get a toxic feeling on meds. And tests showed I had developed drug resistance, so I thought stopping might allow wild-type virus to proliferate. (It was actually the latest of five breaks I’ve taken over the past seven years.)
How he spent vacation: I kept taking the Chinese-medicine supplements and herbs I usually take, but I added milk thistle, alpha-lipoic acid and more of my usual mix of lemon juice and water to help detoxify my liver. I also boosted my vitamins and antioxidants, and did more acupuncture and yoga.
Back on meds because: A while into each break, my viral load bumps up again and I get pooped and unmotivated. That’s my signal to go back on.
How he’s doing: After I went back on my combo (the third time on the same one!), my viral load immediately went down to almost undetectable.
P.S.: These drugs do amazing things, but at a great price in side effects. That’s why it’s important for me to nurture my body both on and off meds.