Hi Dr. Cohen,

I'm not sure what to do...I was diagnosed HIV+ in 11/98 with VL 101,000 and CD4 480. I have not started meds. Both VL and CD4 have been re-tested in 2/99, 4/99 and 6/99 and each time the results have been consistantly the same, VL: +\-40,000 and CD4: 480. I know that established guidelines suggest to start meds but I've also been told by one Dr. that I am boarderline for urgent treatment and that I should consider waiting a while to start meds since I'm maintaining a consist VL and CD4. I generally feel okay (except for lot's of afternoon fatigue and a slightly low WBC) and I want to postpone meds as long as I can (quality of life, resistance issues, possibility of additional treatment options). I've done geno and pheno tests which didn't indicate any primary resistance. If I started meds now, it would probably be with Sustiva and Combivir (even though I do take Paxil and Wellbutrin and am concerned about the CNS issues with Sustiva - hopefully I'd have the vivid sexy dreams). As long as my VL and CD4 remain where they are, how long can I postpone starting meds and what might be the negative effects (if any) to my health, especially my immune system, by living with a VL of 40,000? Also, if I wait to start meds, will my response to them be the same later on as it would be now (again, as long as I'm maintaining my VL/CD4)? Thanks for your input.

Well, this is an aspect of treatment we continue to learn about. And debating.

There was some data presented recently at one meeting that added new information about this critical question. It was from a group in Europe who demonstrated that those who started treatment early were more likely to get the viral load way way down - not just below 50 , but in an experimental test - down below 3 copies. Those who started treatment soon after seroconversion were the most likely - and those who started treatment with a CD4 count above 500 were more likely to get there than those who started below 500. And we think that one of the best predictors of long term success on our antivirals is getting the virus to stop growing - and so anything that might help get HIV to below 3 copies per "drop" (a cc) of blood is worth considering. So that implies starting as soon as you are willing...

However, we do have much experience from people who have started treatment with CD4 counts below 500 - and they too so far appear to do very well. In the combination you mention - of AZT/3TC/Sustiva - over 90% who started and stayed with that combo had a viral load below 50 one year later. (and yes, some actually do get the better version of dreams on sustiva - one man told me he even got the ability to control his dreams, which of course can lead to many interesting possibilities...)

And so far the news is very reassuring of how well the immune system recovers - even in those who start treatment with much lower CD4 counts. But remember what is happening as the CD4 counts drop - the reason this happens is in part because HIV causes enough damage to turn our lymph nodes into scar tissue. Which can't be a good thing for the long term... even if we can recover function later.

On the other hand, meds have their issues - concerns for side effects. Concerns for the nuisance of taking them - and the significant impact missing even some doses can have on their success. Concerns that better meds and better knowledge is still on the way. So maybe you should hold 'em and not fold 'em...

Well - how to know what to do? There is no right answer here - and you have already shared some key info. Mainly that YOU don't want to take pills. And if you don't want to - you don't have to, and you'll likely be fine just monitoring. You'll want to monitor regularly - usually it is every 3 months or so... just to see what the CD4 counts are doing. Since if you do eventually see a downturn in the count, then maybe that increases the need to reconsider your plan. And while observing, you might consider a trial run on "mock" meds - just to see what the discipline of daily or twice daily pill taking is like. And to see how well you can do with that critical aspect of this process.

And of course keep your eyes open - since new studies and and new options keeping coming. For example we just presented some research on a variation on the theme of the combo you mentioned - using d4T instead of the AZT - and it did at least as well, perhaps even a bit better overall in getting initial HIV suppression. You might want to think about what it is about the current meds you don't like or trust - just to consider if there is something you would look for in a newer medication or combination. Studies in every city are always offering new options for people who have never taken antivirals before - some of them may have something worth considering as well.

Much to consider. Given your counts, you do have the time to do what homework and reading you need - before commiting.

Good luck. CC