High viral load at conversion

[Casinokiwi]

Hi all,
I was diagnosed with HIV during an awful sero-conversion in late September.  Long story short, I was admitted to the hospital with an unidentified virus, spent 9 days there, was released with an "unidentified virus" and told my HIV test was negative.  Seven days later at a follow up appointment with the infectious disease doctor I was told that I was HIV positive.  I was also informed that my viral load was at 50 million and my cd4 was in the low 100's.  I was put on stribild and for the lt month I have been undetectable with a cd4 count in the 500 range. 

So here is my question, what does the high viral load count mean at sero-conversion?   I look at everyone else's post and it seems like my viral load was off the charts compared to anyone else's.  What is the impact of living with that high viral load before I got it down?  Is there any resource to explain why there is such a variance I viral loads and sero-conversions?

Thanks in advance if anyone has the information.

Ps.  HIV is some lonely shit!  Only my wife and our divorce attorneys know and it is hard.  How did you decide who and when to tell?

[buginme2]

A high viral load is not uncommon during seroconversion.  After seroconversion the viral load will start to decrease as your body begins fighting.  Most people are not diagnosed this early, so don't compare your first viral load test to others who were diagnosed later and therefore have a lower viral load.

It's great that you were diagnosed early and began treatment right away.  There is research coming out that is showing early treatment (especially during pre and early seroconversion) is very beneficial to the patient. Consider yourself lucky in this regard.  Here is a recent blog post from Paul Sax (HIV doc in Boston) regarding early treatment of HIV

http://www.thebodypro.com/content/70329/more-evidence-that-early-hiv-treatment--really-ear.html

As far as deciding who to tell about your HIV and when to tell them.  That will come with time. 

[oksikoko]

Heya, Casinokiwi. I don't know if this will help, but since I had a fairly easy route, I was able to test a few things to see what made it easier for other people to hear and deal with - there was little to lose if I did it 'wrong'. When I was diagnosed, I still had a month of work left, so (apropos of that other thread), there were still people around. I decided just to tell them all, rip the band aid off, get it over with. I also knew that I was going to be all alone soon, so I wanted to soak up as much goodwill as possible. I'm lucky, though. I worked for an LGBT organization, so goodwill towards newly diagnosed guys like me was sort of a given. Like you, I had been really sick, so people weren't surprised. I had lost so much weight so fast that it was clear something was up.

Anyway, I found that it was easier to be "out" if I was really informed and could just treat it like something that I was the specialist in, like I was your friend who knows all about baseball or ice fishing. I talked as openly about it as I could and was sure to always have the answer to anyone's questions - within reason. Most people know so little about HIV that it doesn't take long to be the expert. ;) I also made jokes about it here and there to help people feel comfortable around me (not everyone is into this, but I've always made fun of everything, so it seems weird to leave this out...).

Soon I realized, for me, anyway,  it was more about making other people know that it was OK so that they'd be comfortable than it was for me to feel OK. Because if they were fine, I was fine, the opposite of a vicious circle. People who aren't positive don't have the benefit of being forced to deal with this, so it's strange and uncomfortable for them in a way that it's not for us. They don't know whether to tell you it's going to be OK and give you sympathy or to pretend it's not a big deal or to act like it's a BIG FUCKING DEAL and cry with you, so they follow your lead. I don't know what your sexuality is or if you've ever come out before, but to me it was really reminiscent of that, so I tried to draw on those memories for how to 'behave' to make people comfortable about it. "I don't need pity, but I might need help at some point" was the nonverbal message I tried to convey.

This went over fairly well (I think?), but the first day I took Stribild (you're on it too, I see), I was completely unprepared for that manic rush - maybe you don't get it? - that I get for a couple of hours after I take it. It seems to have a very different side effect profile than the drugs everyone else is on, which for me was a little isolating. I dont' know if you've felt that. Anyway, I was climbing the walls, went home, lost my keys, sent a couple of strange texts. Disoriented. ;) That put a little hole in my plan to stay collected, but people were pretty cool about it, considering we were all losing our jobs in a week, hehe. I do think I made it seem 'normal' to everyone, so that even when it got weird it wasn't 'weird', but maybe I flatter myself.

That might be harder in your situation, but there does seem to be something to that "knowledge is power" platitude. The more I knew about HIV and HIV medications and HIV/AIDS history and (now trying to learn) HIV-related legal issues, the more confident I sounded if it came up and the more it felt like just another thing.

I know you're having some trouble where you live, and it's not exactly the same situation as coming out positive in NYC, but I do think it can't hurt to get as educated as possible. If nothing else, you'll feel more confident about it yourself. People can sense that kind of thing. If you seem unsure, other people will think you're unsure, and since they don't know anything about HIV, they'll think there's something to be unsure about.

I dunno, I'm rambling now. Stribild gives me insomnia too. ;) Anyway, good luck! Last practical advice: Find someone you know is OK with it, and practice with them. Just tell them up front that you're gonna talk about it too much for a while, and then just bring it up all the time until it's 'normal'.

[Ann]

A high viral load is not uncommon during seroconversion.

What Bug had to say about the whole thing is absolutely spot on. The viral load in a newly infected person is normally sky-high (of course there are a few for whom it is not; there are always outliers).

This (extremely high VL) can happen well before enough antibodies are produced to trigger a positive antibody test.

The VL can usually be picked up within two or three days to ten days or so following infection, whereas it takes about three to four weeks for there to be enough antibodies to test antibody positive. This is obviously what happened to you with your initial negative antibody test.

A high viral load often goes hand-in-hand with a low CD4 count during acute infection. The CD4s can stay low for as long as a year (in the absence of treatment), but they can and often do start to go back up within the first six months.

If the acute infection phase goes undetected (and therefore untreated), the VL will come down on its own and the CD4s will improve on their own. The body can gain some semblance of control over the virus - for many years in some cases - but sooner or later, things will go downhill with a gradual decrease in CD4s and an increase in VL.

Don't worry about having such a bad seroconversion and high VL. It doesn't necessarily mean that you have a nasty strain or whatever else you may be thinking.

I had an absolutely horrendous seroconversion illness (I should have been hospitalised), but I wasn't diagnosed for another four years. My numbers were very good at that point and I went a total of fifteen years before I started treatment. I started treatment last July, even though where I live my numbers weren't in the "start treatment" range. They were still good.

I strongly suspect that if I'd had a VL done when or just after I seroconverted, it would have been off-the-charts like yours. So don't read too much into that high VL.

The important thing now is that you're on treatment. You're going to be ok. Learn all you can about your new passenger and remember, you have hiv, it doesn't have you. It does get better.

You may want to have a look through this website's Lessons. You don't have to learn everything all at once though, and always feel free to come back into the forums to ask any questions that may arise while you read.

By the way, welcome to the forums.

Ann

PS - with starting treatment so early on during acute infection, you can expect your VL to plummet very quickly and your CD4s will likely go quite high, if not sky-rocket, also very quickly. You are going to be ok!

[DrewEm]

As others have said, don't worry about the high VL. I was in the same boat as you - I also spent nine days in the hospital. My VL was in the six figures and my CD4 was 8. My ID doc and I are both amazed I wasn't dead. I didn't get tested as often as I should as I wasn't the type to sleep around and I thought my ex was faithful - no idea what his status is, he has vanished from the area and he was the only person I was involved with. The entire winter before I was diagnosed I went without a cold or the flu. I take Norvir, Truvada and Prezista and at my last appointment my VL was 59 and CD4 was in the 500s.