Of all the aspects of living with HIV, treatment and treatment decisions is one that I haven’t written about in any great detail up to now. I am acutely aware that I am fortunate enough to have easy access to anti-retrovirals while millions of my fellow positive men, women and children do not enjoy that privilege.
My experience of HIV treatment spans the last decade; I did not take any HIV medications for the first eight years after I was infected. By 1999, however, my doctor had noticed a declining trend in my t-cells and suggested meds were now necessary to avoid falling below the 200 t-cells mark.
Although I was anxious about starting meds I agreed because at the time I did what my doctor told me! 22 October, 1999 was when I first started on a cocktail and at the time I was on seven pills a day (3TC, Abacavir and Efavirenz).
Unfortunately I suffered what is now known as the hypersensitive reaction to Abacavir and within 72 hours of starting treatment I was hospitalised – and that’s where I remained for six days.
What an introduction to meds – it was such a shock to me on so many levels to go from being well with HIV to hospital as a result of the medications. I remained on treatment for four months and then decided that I wasn’t prepared to compromise my quality of life anymore and chose to stop all my treatment because of the side-effects.
At the time we did not know what we know now about treatment interruptions, but I was adamant I wasn’t going to carry on with the meds, regardless of the potential consequences.
Since my initial introduction to meds in 1999 I have chosen to stop/start treatment for the past 10 years. In that time I have been through six different combinations of anti-retrovirals, using 10 different drugs. The longest I have spent continuously on treatment was two years; my longest break from meds lasted four years.
When in August this year my t-cells reached a 15-year high of 711 (33%) and my viral load was undetectable, I decided that I was prepared to take the risk of another treatment break and chose to stop my anti-retrovirals on 18 August after a discussion with my HIV consultant.
Today (22 September) I went back for my first blood results after stopping the treatment. Unfortunately my “experiment” has failed spectacularly.
This time it has only taken a month for my t-cells to plummet to 159 (16%) and my viral load has gone from undetectable up to 61 543. My hope that I might have been able to have six months or a year off meds has been abruptly curtailed and I’m due to restart meds again on Thursday this week. The couple of days’ reprieve is so that I can go to the Chelsea v QPR match on Wednesday night and not have to worry about taking drugs during the game!
I am going through a mixture of emotions right now but the bottom line is that HIV cannot be beaten by willpower and attitude alone; it cannot be suppressed by taking a spoonful of manuka honey every day or any other “alternative” treatment. The only successful way to suppress the virus and give your t-cells a fighting chance is to take anti-retroviral therapy and I’m learning that the hard way.