I have been positive for 2 years now and am becoming more appauled with the blithe attitude that "life is o.k." once you start medications. This has been far from true for me, and I know for others, unless their delusional. I haven't felt "normal", or have been able to lead a "normal" life since diagnosis - due both to HIV and the meds. I am now facing the choice of discarding the poisonous meds and seeking out a wholistic path to healing. This is frightening for doctors as it means they are not needed any longer, and for me as I know the seriousness of HIV. I have been to several doctors and am now at a clinic that specializes in HIV. Every time I have mentioned to the PA about my rollercoaster ride of feeling bad to average they look at me with incredulity as if the meds "are suppose to make everthing better and seem to go away". It is far from the truth.
There are clearly patients who continue to experience symptoms either from HIV or from their medications despite taking HIV medications and doing well from the "blood test" perspective. In the pre-effective therapy days the average age of my AIDS patients who died (for a while averaging a death a week) was 35 and before they died they experienced an average of 4.5 life threatening and symptom causeing AIDS-related complications. More often than not their suffering was horrific and they generally asked at some point not to have their life prolonged. In 1996 in our clinic there was a 80-90% reduction in deaths and scores of very ill (and likely to die soon) patients recovered their health and many of those are doing well 10 years later. Still, many patients continue to have problems and ultimately finding both the right HIV regimen and a good provider who addresses all of a patient's needs remains a challenge for many. KH