The hysteria of jtonic

[jtonic]

Umm, there should be NO IF or WHEN, you must insist on starting meds immediately and if your doctor disagrees, find another doctor. Remember, it is 2014.

There is NO advantage to waiting. HIV is invading your DNA every moment you wait. So don't wait. One last comment, as my ID doctor reminded me, you don't have to take meds for the rest of your life, only til we find a cure. And that will happen in our lifetime.

Thanks. I think I said "if/when" due to uncertainty (I hate waiting for results; will feel much better on Wednesday).

My doctor is pro-ARV and definitely an ID expert, so starting meds immediately shouldn't be a problem.

I just hope it will be one-pill-a-day. I hope they don't find drug resistance.

[jtonic]

Hello all,

My appointment is in a couple hours. Some of the anxiety is creeping back, but it's not like I will learn anything 'new'. I think I'm just eager to get answers (especially viral load), and get a plan going to knock it down.

Today feels bittersweet for me. As if fate wanted to test me, I had the most amazing date with this guy yesterday. We had chatted before on Grindr. Because of what I'm going through, I had no plans to hook up (as I usually would in the past). But he suggested a movie and I figured I could use some company. Turns out, we got along SO well. We really hit it off. We saw the X-Men movie and found out we're both geeky types. Had dinner, took a walk in Downtown Montreal. We could talk about anything and everything. Found out we share the exact same birthday next month. We even held hands (and I was never the type of guy who would do this in public).

There was absolutely no sex. So I didn't tell him about my status, and he doesn't know I'm about to spend the next few hours in a clinic. That is the bittersweet part for me. HIV didn't matter yesterday - and that felt good. I was on cloud nine. But as soon as I got home, it hit me. I feel like already, I hid something from him. I don't know when I should tell him. I do realize it's a bit premature to worry about my status. But we're meeting again Friday. It would be a 'take it or leave it' moment, which scares me a lot. I don't know how he would react. Perhaps I should tell him Friday before it gets any further? Or should I wait a bit longer (say, hold off on sex for a couple months until I have a chance to be undetectable)?

But first things first, I'm getting ready to leave for my appointment.

[Guest JizzDumpWI]

Day at a time. Sure he may go nuts when you disclose (and you should earlier rather than later). The loving thing is to disclose, caution against any sex until you are undetectable - and have been for a time; before you can seriously consider raw sex. But this gives you plenty of time to know each other on other levels should a serious relationship develop. If that doesn't happen, you had a great time with him yesterday.

[jtonic]

So... I went to my appointment today, and evidently, the roller coaster is continuing for me (both good and bad). I was expecting to find out my viral load and genotyping results for drug resistance, and even hoped to start meds right away. Instead, I got a curve ball.

First, the good:

It turns out, the test from my most recent visit (May 22nd) was undetectable!

(May 22nd is the day I found out I was poz from an earlier test done on April 28th - so those are the 2 dates when I had a test done)

This means that in less than a month, from April 28th to May 22nd, I went from positive VL to undetectable, without even starting standard ARV meds.

The nurse said that was an unusual finding; however, there are 2 possible reasons (1 very likely, the other much less probable):

1 - The reason I first went to the clinic (on April 28th) was to request PEP medication (post-exposure prophylaxis) as precaution after a doubtful hookup. They gave me a combo of 1 Truvada + 2 Isentress pills per day. While on PEP, I was technically poz - I just didn't know it. But those 24 days of PEP alone may have been enough to get undetectable. Or...

2 - the nurse said I might be one of those rare 'elite controllers' but it's too soon to confirm this conclusion; a new test will tell us more in a week.

The bad:

- because there wasn't enough detectable virus in the sample from May 22nd, they couldn't get any genotyping done, so I still don't know which meds I can eventually take.

- my CD4 count was low (240) but the doctor said I should definitely not worry, as this is just their first data point, plus I did experience a lot of stress and anxiety for 2 months, and it can still increase after I start proper ARV meds. but it's an indication that the infection did have an effect on me.

- the waiting game continues.

I was a bit confused at the clinic. I managed to ask some questions. But now I have more questions than answers:

- was it really Truvada that beat the virus on its own in just 3 weeks?

- is this good news?

- still no idea what my viral load was when I got diagnosed...

- in general, how do they know if a patient is indeed an elite controllers (is it something they can confirm with a test somehow?)

I chatted at length with poz1956 on Skype, and he said there are many possible reasons for the oddly fast undetectable result.

Perhaps it's a weak strain, and Truvada alone was enough to beat it down.

Or he said my body is just fighting the virus well on its own.

At this point we truly don't know - including the doctor.

I will get news from today's test in about a week via phone call. The expectation is that the viral load will have increased again just a bit (since stopping PEP). If that's the case, the doctor will order genotyping to be done on those samples, and we can finally sort out the meds situation. If it's still undetectable, the waiting game will continue again, since they can't recommend me the right meds without genotyping (and that requires a viral load).

In any case, they said I should remain optimistic, and even take this as good news. I just wish I knew exactly why and how it happened.

Day at a time. Sure he may go nuts when you disclose (and you should earlier rather than later). The loving thing is to disclose, caution against any sex until you are undetectable - and have been for a time; before you can seriously consider raw sex. But this gives you plenty of time to know each other on other levels should a serious relationship develop. If that doesn't happen, you had a great time with him yesterday.

You're right. I dread this moment, but I will need to disclose. We're meeting tomorrow and I will tell him my status (that I'm poz and possibly viral, despite today's odd result). If he goes nuts, at least, I will have a clear conscience, knowing I never put him at risk. If he freaks out and stops talking to me, then it's something I will need to accept. If HIV is a deal-breaker for him, then I can't force him otherwise. I'm still extremely nervous about his reaction.

[PissPigBrooklyn]

Why are you anticipating his reaction? He may have dealt with this issue before. He may go nuts or it may not be any sort of deal breaker to him. I do understand your nervousness but it is like any news you have to break to any new potential dating interest. The only other advice I would counsel is to do it directly, not dropping hints and to do it with acceptance and confidence that it is a part of you and nothing of which you have to be ashamed or feel unworthy. You can show vulnerability after he has received and accepted the news. Good luck and keep us informed.

[lower_bucks_bottom]

Truvada and Isentress are a typical 3 drug treatment (truvada is 2 drugs in one pill and Isentress is the other) so it is very possible that this brought you to undetectable. This also shows that your virus is not resistant to Truvada and Isentress, so this is good news. If you had no side effects then you and your Dr should probably go with this as your treatment.

[Guest JizzDumpWI]

Why are you anticipating his reaction? He may have dealt with this issue before. He may go nuts or it may not be any sort of deal breaker to him. I do understand your nervousness but it is like any news you have to break to any new potential dating interest. The only other advice I would counsel is to do it directly, not dropping hints and to do it with acceptance and confidence that it is a part of you and nothing of which you have to be ashamed or feel unworthy. You can show vulnerability after he has received and accepted the news. Good luck and keep us informed.

Exactly. jtonic, his reaction or lack thereof will tell you a lot about him. PissPigBrooklyn is spot on though, you are who you are; no need to feel as though you are damaged, unworthy of love, etc. You have a highly controllable virus. No reason that if this were to ignite into a relationship that you two cannot enjoy the intimacy of raw sex with virtually no risk to him (virtually because risk is a natural part of living and thus nothing is totally risk free). Nothing about warrants shame. You are as worthy of a loving relationship as anyone else. While it makes sense to think about your words, please make sure that in your mind you are informing him because you see a spark you want to pursue, and this is a consideration he should know now rather than later. The labs will all be done sooner that it feels like (poptronic will attest it has been a fast 5 months). And whether you are an elite controller or just found excellent benefit from the Truvada/Insentress cocktail will be known soon enough.

[bbzh]

I would not tell my status until I was sure he had feelings for me. Why the rush?

That being said, you do have to play safe until you are ready to disclose.

You are in a delicate phase right now. Don't add extra drama to your life right now.

[jtonic]

Why are you anticipating his reaction? He may have dealt with this issue before. He may go nuts or it may not be any sort of deal breaker to him. I do understand your nervousness but it is like any news you have to break to any new potential dating interest. The only other advice I would counsel is to do it directly, not dropping hints and to do it with acceptance and confidence that it is a part of you and nothing of which you have to be ashamed or feel unworthy. You can show vulnerability after he has received and accepted the news. Good luck and keep us informed.

Exactly. jtonic, his reaction or lack thereof will tell you a lot about him. PissPigBrooklyn is spot on though, you are who you are; no need to feel as though you are damaged, unworthy of love, etc. You have a highly controllable virus. No reason that if this were to ignite into a relationship that you two cannot enjoy the intimacy of raw sex with virtually no risk to him (virtually because risk is a natural part of living and thus nothing is totally risk free). Nothing about warrants shame. You are as worthy of a loving relationship as anyone else. While it makes sense to think about your words, please make sure that in your mind you are informing him because you see a spark you want to pursue, and this is a consideration he should know now rather than later. The labs will all be done sooner that it feels like (poptronic will attest it has been a fast 5 months). And whether you are an elite controller or just found excellent benefit from the Truvada/Insentress cocktail will be known soon enough.

PissPigBrooklyn and JizzDumpWI - thanks for your kind words. I saw my counselor today (same ID clinic, but she's my social worker / psychologist). It was a good session. She echoed nearly everything you said. HIV is just one of many possible 'deal breakers' out there, and everyone has their own, from trivial to serious. A guy can be rejected for being too thin, too fat, too hairy, a drug user, a smoker, or perhaps living with his parents, maybe even too good-looking! HIV is just one of many 'things'. None of these attributes 'define' a person. So there's no reason why HIV should carry extra weight on my shoulders. In other words, I should stop being a 'poz drama queen' (not her words of course, but it became my internal speech).

I did meet my date later that afternoon. Mind you, it was only our 2nd date. But there's definitely a spark (he's still so damn cute!). So I felt it was time to tell him. The butterflies came back. I actually followed your advice. I did it rather directly, without dropping hints, without building any suspense. I flat out told him: "I feel the need to share something with you; I've been seeing a doctor recently, and I got a diagnosis for HIV". I teared up immediately after that, because I saw his shock and braced for the worst. Needless to say, he also saw me at my most vulnerable. He didn't freak out at all! There was no crisis, but I could sense hesitation. He just had to process the news. The first thing I uttered was "I'm sorry". Not sure why, but it came out. The second thing I said was "I would never put you at risk, so I wanted to tell you before things got any further". The third thing was "I'm definitely in good hands, and I'm not in danger of dying from HIV, especially in 2014". After some back and forth, he switched from concern to curiosity, which I took as a good sign. He started asking questions. He didn't know what undetectable meant (I told him about my test results)- so I explained viral loads and how meds work today. He asked if kissing was safe. He asked if using 2 condoms was safer (I don't think it is? due to unnecessary friction?). I also had to clarify that undetectable only means 'under control', definitely not 'cured' (you'd be surprised how many guys think that's the case). To my surprise, after 10 minutes, we were moving on to other topics - talking about IKEA furniture =) I have to say, that was a great feeling. At the end of the day, I'm glad I told him. Of course, I don't know what he's thinking tonight, or will think tomorrow. He might change his mind. But at least, it was a huge weight off my shoulders. This was actually the first time I told anyone I was poz (aside from the internet). In a way, today just invalidated the weeks of anxiety I had accumulated. And it confirmed what everybody here told me all along. HIV really doesn't change a person; it IS part of being poz, but it will never define 'you'.

I would not tell my status until I was sure he had feelings for me. Why the rush?

That being said, you do have to play safe until you are ready to disclose.

You are in a delicate phase right now. Don't add extra drama to your life right now.

bbzh - I agree the timing was a little weird for me (people should never rush a disclosure for the sake of disclosing), but there's a definite spark between us. We can't stop texting, holding hands or sharing every little details of our lives. There's clearly plans to meet again. So I felt like today, it was the right time to share what I was going through. Not too early that it feels out of place. Not too late that there's broken trust. Thankfully, the drama was all in my head. It was all gone after 10 minutes. There will be many more discussions if we get to the point of having sex. But for now, I appreciate your concern about going through a delicate phase. It's always good to reflect.

Truvada and Isentress are a typical 3 drug treatment (truvada is 2 drugs in one pill and Isentress is the other) so it is very possible that this brought you to undetectable. This also shows that your virus is not resistant to Truvada and Isentress, so this is good news. If you had no side effects then you and your Dr should probably go with this as your treatment.

I only had 10-15 minutes with my ID doctor the other day, so I didn't have time to dig deep on what happened (plus, there was the initial surprise of finding out I was undetectable, which threw me off). Basically, they will keep monitoring my viral load, based on a new sample taken yesterday. If my VL increased, it would indicate that 3 weeks of PEP medication (Truvada + Isentress) was enough to target the virus - and that would be the reason I was undetectable last month. Additionally, if there's enough virus to perform genotyping (VL above 400), then they will recommend a drug that will work as well as PEP did for me (but we would still favor one-pill-a-day as opposed to 3).

The other possibility (and the one my social worker is predicting) is that my VL will remain undetectable, even after stopping PEP meds for a month. In fact, it is entirely possible that I was already undetectable the day I first went to the clinic in April. Sadly, we don't have measurements before that. So there's not enough data to make a conclusion yet. Everyone says there's a possibility that I'm an elite controller, but it's too early to confirm. Regardless what happens with the next results, I should still welcome both scenarios as good news.

By the way, I took home my results:

The only thing I'm truly worried about now is my CD4 count. The doctor said it's on the lower side, but there's nothing alarming. True: I don't know what my CD4 was before so I can't compare. But personally, 240 seems very low to me - especially when I see other members in the 500-900 range. I know CD4 is just a measurement in time. I was told it can fluctuate on any given day. And there's also the fact that I lived with high anxiety for two months now. Maybe I'm not eating well enough? Or maybe 200-300 was always a normal range for me? Am I obsessing too much over my CD4?

Overall, the past 2 days have been a roller coaster, but mostly a good ride today.

[Poz1956]

It's great that the date went well.

Dan Savage sometimes calls disclosure of HIV status a Superpower. It instantly detects Douch Bags. I'm glad he wasn't one.

The thing I find most troubling in this post is that the guy asked if Kissing was safe!

Is the state of HIV awareness really that low, that someone would ask about kissing? Our HIV education organizations have totally failed us. It seems that along with all the other burdens, it falls on the Pozzies to teach HIV 101, every time we reveal out status. I love the graphics produced by The Stigma Project, but I have sort of scoffed at the ones with info-blurbs about kissing, casual contact, and other ultra ultra basic concepts. Sadly I guess they are needed.

Edited June 21, 2014 by Poz1956

[bearbandit]

Have to admit that I loathe the duck in the bath one for its sloganeering: clean? A reqgular question I ask the guys I fuck with is "Sweat: prefer several days stale, just not showered today or straight from the shower?" (I like to cater to all tastes.) Given the window period period between infection and evidence (ie antibodies) is strikes me as shooting a hole in your foot. How many times does it have to be said that you cannot prove a negative? All you can say is that HIV antibodies, hep C antibodies, evidence of gonorrhoea was not found in the sample.

When I lived in North Wales I had a long conversation (heard by everyone on the bus - only a 15 seater) with our local Goth who genuinely wanted to know how to keep safe. Myfanwy and Emyr learned a lot that day...

[Poz1956]

Bear, I think you need to look at the full sized version of the duck. It says "Dirty is for laundry, not your HIV Status."

The Stigma Project is all about fighting the prejudice all us Poz guys face.

[Guest JizzDumpWI]

POZ1956, yes the state of HIV education (and education in general) is abysmal. I do disagree that it falls to "us pozzies" to teach HIV101; although I understand that much of the time education starts at disclosure. You've experienced our little cabal here that is bringing the conversation to a more informational level. Now if wee could package that up into one easier to read piece, put a Dan Savage humor spin on it, and put it the hands of most... oh, wait, right they can't read...

[bearbandit]

Poz 1956,

My deepest apologies: I've got to the point where I have reading glasses, computer glasses and TV glasses, and I simply didn't expand the image: I saw it at mid-morning when all the little monsters are taking up the local bandwidth. Sorry I got your message completely wrong - thanks for making it plain that I'd made a complete fool of myself before anyone else!

[jtonic]

The thing I find most troubling in this post is that the guy asked if Kissing was safe!

It seems that along with all the other burdens, it falls on the Pozzies to teach HIV 101, every time we reveal out status.

I do disagree that it falls to "us pozzies" to teach HIV101; although I understand that much of the time education starts at disclosure.

I didn't think twice when he asked if kissing was safe. It did strike me as obvious, but I anticipated questions like that. Plus, we had been kissing just moments before, so it's understandable that he asked. I answered the best I could. I think disclosure of any kind comes with a double burden: the discloser deals with stress, fear of rejection, then educating the partner. The disclosee has to deal with the initial shock, acceptance, then be able to absorb information.

Poz guys will always have to do some HIV 101, whether they like or not. But it's the same for any other kind of disclosure. For example, what if someone reveals to me that he's transgender, or deciding to declare bankruptcy, or that he has a condition that requires major surgery... something like that. The burden of 'teaching' always falls on the one having to disclose sensitive news. People tend to brush on issues until they're confronted with the reality. Thankfully, if your partner is truly accepting, then he'll learn on his own, whether that's living with HIV, or being transgender, or going bankrupt, etc. He'll quickly get to empathize and 'know' rather than judge and 'ask'.

How many times does it have to be said that you cannot prove a negative? All you can say is that HIV antibodies, hep C antibodies, evidence of gonorrhea was not found in the sample.

I wish every gay guy was aware of this. I see too many 'clean/ddf' statements and baseless 'neg' statuses on hookup sites.