Newly Diagnosed - Low Viral Load

[KCSHope76]

Hello everyone,

I tested positive for HIV in March of this year. Based on my last test being negative in October 2013, the furthest back I would have caught it would be July 2013. I am a 38 year old male.

My first test result came back with a CD4 of 506 and VL of 564 in late March. My doctor is in favor of starting treatment right away rather than waiting and thinks Complera is good (he first thought Atripla but I have bad nightmares and night terrors).

He recommended phenotype testing to see if I would be resistant. I drew blood two weeks ago but the lab order was cancelled because my viral load was too low (need a minimum of 500 VL).

After that he said I could either just start or wait for my next test in July and see if my VL increases to do another phenotype test.

I don't know what to do and wonder if anyone else had similar experiences. He thinks I may have a "weak virus" and doesn't think it's crucial to start right away. Again, he still favors immediate treatment but it's up to me.

I'm so terrified of starting treatment because I'm worried about adherence but know that I shouldn't wait until my immune system is severely damaged. I am also a smoker for 20 years but am planning to quit.

Would appreciate any help.

Thanks.

[vertigo]

Hello KCS and welcome.

Your numbers are OK, so your doctor is right that it would be OK to wait before starting treatment.  It would also be good to have an accurate resistance test.  Something like up to 20% of new patients do pick up a strain with some resistance.

There's no reason to be terrified of starting treatment, however.  The drugs are really good these days, with minimal side effects.  I would recommend avoiding Atripla, however, particularly given the night terrors you mention.  Complera is certainly a good, easy option.

Also, some doctors will start patients on one of the PI-based regimes if resistance issues are uncertain, or if there is any question regarding adherence.  You should get yourself in the mind frame that you will take all your doses as prescribed, however.  HIV needs to be taken seriously.

Just curious, is your doctor an HIV specialist?  It strikes me as a little odd that you say he "recommended" a resistance test.  That's pretty much part of the standard protocol at first blood draw, as far as I'm aware.  It's always good if your doc has had plenty of other HIV patients to gain experience with.

Good luck whatever you decide regarding treatment.

[KCSHope76]

Vertigo - thank you so much for your reply. I guess my fear of adherence is that I'll miss doses then my virus become resistant. But you're right. I need to get in the right mind frame. I've been putting on my contact lenses every day for the past 19 years so I'm sure I can do my meds daily especially since my health depends on it.

My doctor is an HIV specialist. He's one of three at the clinic I go to that's associated with our state university. I am wondering though about his experience and get the sense that he's fairly new. I never did ask him. I'm not 100% comfortable with him being my specialist and am considering changing. The resistance test was definitely a recommendation and not part of my initial test.  Starting treatment was always "up to me".

I will ask him about PI Based regimes.

Thank you so much. Your post helped relieved some of my anxiety.

Btw. Correction on my first VL. It was 464.

[bostonprofessor]

Short note to report on my own experience.  My first test was very good--CD4 of 576, 42%, and VL of just 111.  Yet we started right away, Complera, and within four weeks I was undetectable (CD4 of 594, 37%, and undetectable VL).  My primary care's advice was go ahead and start; starting early seems to be recommended these days, at least according to her.  Also, they did phenotype testing and everything else, and no one said the VL was too low to get good results.

Adhering to the routine is easy for me, but I also have a breakfast routine that I've built the Complera into.  So I took a routine I already had and built on that, didn't try to start a new routine from scratch.  I had already switched my breakfast to be less cereal and fast bagels, and more warming up of a legume-based soup.  I like Ana Sortun's Turkish red lentil soup that was published in Wall Street Journal "slow food fast."  She says she has it for breakfast, and that works well for me!  But that's what I like.  Find what works for you.

Good luck with everything, and hope you are able to find and maintain a good primary care person with HIV experience.