Finally undetectable!

After almost 15 years of HIV, and six years of viral load testing, I heard on Thursday, June 21st 2001 that my viral load had dropped to an undetectable level for the first time. It was a milestone neither I nor my HIV consultant ever expected me to reach.

Fifteen months earlier I had taken a planned treatment interruption, and went off all antiretrovirals for a year. I had been on a variety of treatments, beginning with AZT monotherapy, since 1993. When the HAART (highly active antiretroviral therapy) era began, I had already become resistant to protease inhibitors, due to suboptimal early dosing of saquinavir, and by 1999 I was resistant to all three classes of currently available drugs. My liver also needed to recover from a (mitochondrially) toxic d4T/3TC combo.

Taking the treatment break wasn’t an easy decision, but with my liver about to explode, apparently, and a rising viral load, there seemed to be little choice. I kept going with acupuncture and herbs, managed a once-in-a-lifetime Millennium trip to Australia, and then, once my viral load began to hit the half-million mark, slowly began to fade.

I used all of what little energy I had to read everything about the latest treatments, including everything from NAM, and reviewed all my resistance tests. In February 2000, Kaletra (lopinavir/ritonavir) became available in Canada (where I was living at the time) on expanded access. Together with my HIV consultant, we settled on restarting with five drugs, recycling several older options, and including a completely experimental drug called mycophenolate.

Amazingly, my liver didn’t explode, and although I had the usual nausea and diarrhoea associated with starting a new regimen, within a few weeks I felt human again. After a month, my viral load plummeted from over 600,000 copies/ml to the 5000 copies/ml range. My CD4s began to slowly increase, but I decided to try and throw everything at the virus in order to give me the best chance of a full immune recovery.

A few months later, during a holiday in Spain, I added another three drugs, making eight in total. I was nervous adding more away from home, but since I was British, I naively figured I could get free hospital treatment in Spain if there were problems. Fortunately there weren’t, and, frustratingly, my viral load settled, remaining between 100-500 copies/ml for the rest of 2000.

I was one of the first to be offered therapeutic drug level monitoring in early 2001, and we discovered that all my measurable drug levels were far too low, despite above-average doses of Kaletra. My viral load finally reached undetectable after further adjustments, and another day of therapeutic drug monitoring.

From being at death’s door in March 2000, with a CD4 count of 30, I felt like I got my life back by the summer of 2001, with 210 CD4s. Most amazingly, my liver function tests were completely normal.

Therapeutic drug monitoring, along with Virtual Genotype testing, a great consultant, great GP, amazing partner and, above all, an almost pathological determination to beat HIV, got me to that point. Today my viral load is still undetectable and I'm taking ‘only’ six different antiretrovirals and two lipid-lowering pills as well as testosterone injections in order to live a full and happy life!

If anyone tells you that all that is left is palliative care and you're not ready, or you are too frightened to try new treatments, don't give up. For me, at least, the fight was worth it. 

Edwin wrote this story back in 2001. Since then there have been even more advances in HIV treatment. For most people handfuls of pills all at once are a thing of the past. 

Help us to support people like Edwin and make a donation to NAM today. Thank you.


By Martin

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.