No T Cells, No Meds, High VL
Jun 22, 2004
I will try to make this as brief as possible, but I have not seen anybody else whose disease has followed a similar path. I have been positive since at least 1992. My T-Cells have been less than 50 for 8 years. I have never had an undetectable viral load and am resistant to every med out there. I have had kidney failure twice (due to meds). I lost my right eye and sinuses to aspergillus 5 years ago. It was lodged in my sinuses and I was told that I was a dead man (had no T cells at the time of surgery), but they took out the eye and treated my with IV amphotericin for a long time, which somehow I tolerated. I survived and am doing quite well. I have gained back all the weight I lost. I feel strong and have not had another OI since then except that I have CMV retinitis in my left eye which has been controlled first with injections and now it has been totally suppressed by Valcyte for the past 2 years. My current CD4 level is 2, VL is 150000. For AIDS meds, I have been taking 3TC only, since my last kidney failure 2 years ago. I also take Bactrim, Diflucan, Sporanox, Biaxin, Cipro and Valtrx. My Doc says the 3TC will keep my virus weakened, rather than allow the more dangerous wild type to reemerge. My Doc wants me to start on T-20 and Tripranivir. I question whether or not to go back on meds at all, since I do not see my health declining at this moment and I feel that maybe I should wait until I really need these drugs rather than starting them now and possibly using up what could be the only two drugs that I may not be resistant to. My question is two-fold. First, have you heard of any other case like mine and secondly, do you think I should go on these meds now or wait until later? Thanks for all the help you have provided to our community over the years.
Response from Dr. Lee
You are certainly a lucky one in terms of surviving even the severity of the opportunistics you have experienced. First, there are other cases similar to yours in that folks with long-term severe immune dysfunction and very low CD4's do sometimes hang in for a long time. As you are aware, the deck is stacked against you in this setting and in terms of prognosis (or best guestimates) you are not in a strong actuarial position (actuarials are the "bets" insurance companies place based upon where they think a given individual falls within the bell curve of experience).
There are several infections that could lead to your death. Any infection for which we do not have "cidal" or killing drugs requires the body's immune system (notably the CD4's, etc.) to clear the infection. If you happen to get one of those, it is not very likely that you will survive. In fact, that is why your doc has you on the boatload of medicines to try to reduce the likelihood that some of these infections will try to take up residence in your body.
So to move on to your second question, yes. I think you would be more likely to increase your body's ability to fight off infection by using antiviral medicines to either shut off the virus or at least keep the virus "crippled" in order to protect your system and allow your CD4 cells to multiply as best they can.
I know a fellow who had a CD4 of 3 in 1993 and lost vision in one eye to CMV. Today his CD4 is over 400 and he is back to work and living a full life. I wish you the same good fortune.
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