The hysteria of jtonic

[jtonic]

So, they took blood samples on June 18. It's been 16 days and I still haven't heard back from my doctor. Getting anxious. I called my social worker and she said the results haven't come back due to several holidays we've had recently in Canada. But it seems unacceptably long to me.

The only thing that keeps me sane right now is knowing that, as of May 22nd, I was undetectable (to my surprise) - even though I hadn't started any of 'usual' meds like Stribild / Complera / Atripla, and instead, could be thanks to 3 weeks of PEP.

I'm just scared that in the 6 weeks between my last 'known' test and today, my viral load may have increased back. If so, I want to find out what it is right away.

Anyone ever deal with such a delay? (16 days and counting from test to result)

[bearbandit]

In the UK it generally takes a couple of weeks to get the result of a viral load test, longer if there have been bank holidays in the way. Unless there's been a query about a blood test I tend to just leave it till the next time I'm at the clinic; I've just changed clinics so I'm on a much shorter interval than I was as the new clinic works out how the trends are going.

When I phoned my old clinic to ask them to send me emails of my bloods (14 days after the vampire) viral load was the one that wasn't available yet. It's a pain in the ass, but VL is always the last result to come in. While you may have blipped out of undetectable, I'd doubt it would be by any great figure. In a seven month drug holiday some years ago (and remember I've been diagnosed over 25 years) while my CD4 count plummeted (880 to about 200), my viral load only went from undetectable to 65,000, enough to make me mildly infectious. It's possible that after your three weeks of PEP they're re-testing the same sample to be sure of the reading: you're in an unusual position.

I can understand your wanting to know right this minute, but if there's one thing you learn in the HIV game, it's patience. 3 weeks from Vampire to VL result wouldn't surprise me! I think it's probably reasonable to start daily phone calls on Monday. Right now, you're making stress for yourself.

[jtonic]

I have my appointment on July 22nd to find out once and for all.

[jtonic]

Appointment is tonight. Nervous as hell.

[jtonic]

Well, here's an update (even though nobody replies anymore, I'm posting just in case other poz readers find it helpful).

My appointment on July 22nd didn't go well. I had waited since June 18, hoping to choose a pill and start ARV meds as soon as possible. Instead, I was told the clinic 'forgot' to request the genotyping tests a month ago. They tried to apologize, saying I had a somewhat uncommon pattern, and because I was undetectable in May, they forgot to order genotyping when I visited the second time. Still a mistake, and poor follow-up in my opinion. I had to redo all the blood work on the spot. On top of that, the nurse messed up with the needle because he couldn't find my vein, so he had to abort and try again (I mean, how hard can a blood sample be?!?). I just broke down before we could get it done. Too much stress, too much frustration, not enough patience. I decided to leave. I only met the doctor briefly, and we sorted out some other issues (anxiety meds and antidepressants). They also noticed I have been losing weight due to the anxiety over the last 2 months. Clearly, despite the advice, HIV is starting to affect me physically - not the virus itself, but the thought of it. Another source of anxiety is that I’m also not doing well financially, so everything becomes a concern (paying the deductible for ARV, another deductible for anxiety meds, trying to watch my nutrition and avoid cheaper/lower nutrition food, the weekly appointments for support, less work hours, etc - it does have an impact on my budget). The doctor is trying to get me protein supplements under medicare, and I have a referral to go see a nutritionist so we can increase my weight back to normal range (I’m 5’4 and only 105lbs). Basically, it was not a good day. I left the clinic feeling like I was back to square one, with only some anxiety meds, and a bruise on my arm. The waiting period for genotyping is another 3-4 weeks.

They did tell me my viral load, however. It increased slightly from undetectable to less than 900 in the month since I stopped PEP. It was the likely scenario. My CD4 count was also unchanged. This almost confirms that PEP medication was the reason I got undetectable, therefore, I am not an ‘elite controller’ or a long-term non-progressor, as some of the users suggested here. The viral load is also low enough that there’s no rush to start ARV. That said, I was still mad that day, and I still feel an urge to get this virus back under control.

To make me feel better, the doctor got me an appointment to sit down with a pharmacist the very next day and discuss the various ARV options - she said it would at least get me a bit further in the process. We spoke for about an hour; all the various combos and side effects. We narrowed the choices down to Stribild (because it’s single-pill, and I was told it was a bit more forgiving on the meal requirement). Another good option turned out to be Kivexa + Tivicay, which I originally dismissed, until they told me they’re about to be combined into a single pill within the next 6 months. That got interesting. Essentially, it’s about to overtake Stribild as the newest single pill regimen some time in 2014/2015 (has anyone else heard of this?). They don’t know what name it will be. But assuming there's no resistance, I might go with the Kivexa + Tivicay combo, then switch to the new pill in 2015, which the pharmacist said would be a no-risk, no-brainer transition.

My next appointment is today with my doctor and social worker. It’s just to check on me; I don’t think they’ll have the genotyping results just yet. They might have an updated viral load, but that wouldn’t be a critical piece of information. Whatever it is, I’m basically just waiting for a green light to start ARV as soon as possible. I'm still bitter that it's taking a month longer than it could have, if they hadn't forgotten to do the right test.

In the meantime, I’m trying to work the $80/month deductible into my budget in the near future. I have a number of semesters left at school, low pay job and unstable hours. On that note, does anyone from Quebec know if I can get any type of financial aid to help cover the deductible? My pharmacist hasn't been helpful on that subject, except for a brief mention of a copay program, which seems to be available only in the US upon further research. If anyone can advise me on this, it'd be appreciated.

On the dating front, I'm going through a dry spell. Aside from one pleasant hookup (which was quite therapeutic), it's otherwise difficult to find acceptance, especially on the more 'popular' places like Grindr. The sad reality is that young guys are uneducated about HIV. It's even more difficult if you're undetectable, because people automatically associate the word with 'poz', so they stop talking to you, even though you're technically the safest guy out there. I have reached out to a local organization that does support groups for youth, and after 2 months of hesitation, I'm considering their next session. Perhaps it will help me connect with poz guys around my age, and see how they're coping with this. I'm giving up on Grindr.

Hopefully, I will have better news in about a month!

[slowfuck]

Good to hear the update, both to know that you're fighting your way through this, and for generously sharing your experience for others to learn from. I hope the support group works out. Worth a go, and with your openness I imagine you will find it helpful. I hope so anyway. Looking forward to better news from you on the next update!

[Inception]

Do they not have someone at the clinic who can give you info on assistance if you are low income? I don't know Quebec, as I am in BC. Here HIV medications are covered 100%. You do have to pay Medical Service Plan premiums like everyone, but those are based upon you income level. I pay at the highest level, and it is still under $70 a month. I am not going to suggest moving to Vancouver because everything here (rent, food etc) is way more expensive than Montreal.

I haven't been coming to this site regularly lately, so I just read through this thread. I would say that more than anything you need to find a counselor you feel comfortable with to deal with your other issues, like the anxiety. HIV is easy to deal with compared to that.

[jtonic]

Good to hear the update, both to know that you're fighting your way through this, and for generously sharing your experience for others to learn from. I hope the support group works out. Worth a go, and with your openness I imagine you will find it helpful. I hope so anyway. Looking forward to better news from you on the next update!

Thanks slowfuck. I feel ready to approach a support group. Recently, I've grown tired of hiding and feeling ashamed. I'm in a phase where I need to connect with real people, hear other stories, and just be surrounded once in a while - in person. I contacted an organization called 'Maison Plein Coeur' in Montreal, and they immediately had me over yesterday for a 1-on-1 talk with one of their volunteers. They have a group called Youth+ for guys 18-35 living with HIV. I originally heard about them from my clinic. Aside from discussion groups, they also have sports and social activities every month, a drop-in center, and peer support. This will be an interesting step for me. Physically showing up at the organization was nerve-racking. But they're really great people and I think I will find a bit of solace there. They told me that sooner or later, I might be helping the next guys with their diagnosis. That's a good thing to hear, and I think they're right. They put on a list for their next event.

Do they not have someone at the clinic who can give you info on assistance if you are low income? I don't know Quebec, as I am in BC. Here HIV medications are covered 100%. You do have to pay Medical Service Plan premiums like everyone, but those are based upon you income level. I pay at the highest level, and it is still under $70 a month. I am not going to suggest moving to Vancouver because everything here (rent, food etc) is way more expensive than Montreal.

I haven't been coming to this site regularly lately, so I just read through this thread. I would say that more than anything you need to find a counselor you feel comfortable with to deal with your other issues, like the anxiety. HIV is easy to deal with compared to that.

I met the doctor again yesterday. I told her about my money problems. Heck, I even had to disclose that I didn't have $20 in my pocket to cover the anxiety meds she prescribed me; at least not until I get another paycheck. She told me not to worry. The clinic and the pharmacy will find a way to cover my meds, even the deductible portion. In the meantime, I'm considering going on welfare while I look for a more stable job, hopefully by September/October when I start tritherapy. The freelance work I do isn't enough right now, and things have been slow for the past 2 months. My anxiety and lack of sleep lost me a good chunk of my usual business. But I'm hoping it's temporary. I've been surrounding myself a lot, exhausting every possible source of help. I have my doctor, 2 social workers, 2 different therapists, a nutritionist, an assigned pharmacy rep, and soon a support group. The clinic says I'm one of their most proactive patients (literally the entire staff in the building knows me now). It's a lot of appointments to fit in, but I'm taking this head on.

[slowfuck]

Really good news. You have friends here who can try to help by words, but there is nothing better than meeting other people in face to face dialogue, seeing as most communication is non-verbal. Taking it head on and creating something good out of a desperate situation seems is a great way to deal with it and you will find it feels great to be able to help others deal with what you're going through. Indeed helping yourself while helping others. And who knows, you may well find someone special at the social group too. Well done, glad to see you're on a good track.

[lower_bucks_bottom]

To make me feel better, the doctor got me an appointment to sit down with a pharmacist the very next day and discuss the various ARV options - she said it would at least get me a bit further in the process. We spoke for about an hour; all the various combos and side effects. We narrowed the choices down to Stribild (because it’s single-pill, and I was told it was a bit more forgiving on the meal requirement). Another good option turned out to be Kivexa + Tivicay, which I originally dismissed, until they told me they’re about to be combined into a single pill within the next 6 months. That got interesting. Essentially, it’s about to overtake Stribild as the newest single pill regimen some time in 2014/2015 (has anyone else heard of this?). They don’t know what name it will be. But assuming there's no resistance, I might go with the Kivexa + Tivicay combo, then switch to the new pill in 2015, which the pharmacist said would be a no-risk, no-brainer transition.

A good source of info on different meds is http://www.aidsmeds.com/list.shtml. Kivexa is called Epzicon in the US. One of its components is Abacavir which can cause a serious reaction in some people with a specific genetic marker. The prevalence of this marker is only 1.2% in people of asian ancestry so you should not have a problem, but they should test you for it before putting you on Kivexa + Tivicay. You can read more at http://en.wikipedia.org/wiki/Abacavir and http://www.aidsmeds.com/archive/Ziagen_1589.shtml.

I have been taking Kivexa + Tivicay for a couple of months now and am waiting for the combination pill (it looks like a potential name is Trii) to come out.

I hope this helps.

[jtonic]

Thanks everyone for your support (including those who reached out privately).

 

So here I am, a month later. My genotyping results came in a while ago. It was all green. The doctor said I could choose any ARV medication I wanted. I settled for Tivicay and Kivexa (Epzicon in the US). A big plus, for me, was that they don't necessarily require a meal, they have a longer half-life than many pills (so taking them a couple hours late won't be as dramatic), and most of all, they are getting combined as a single pill called Triumeq. It was approved in the US last August, but not yet in Canada. Hopefully Canada will follow suit and I would be able to switch instantly when it's available. 

 

My doctor wrote the prescription 3 weeks ago. But I wasn't ready to take them yet. I had a lot on my plate (filing for bankruptcy/debt consolidation, moving, breaking up with the boyfriend, etc). Most of this is behind me now. And tomorrow is the day. I have a checkup appointment, and I'm thinking of grabbing the pills and go home with them. Now, I'm mostly worried about side effects and whether I'll be able to adjust to the idea of taking them every day without missing a dose. I read a couple other threads, and it seems everyone goes through an adjustment phase. Apparently, the more you worry about side effects, the more likely you are to notice them, almost like a placebo effect. So my plan is to treat it as if it was an Advil that will also magically strengthen my immune system. Kinda childish, but my therapist says I should visualize it like a simple Advil. Reduce the fear, one pill at a time.

 

I also got great news from my clinic / pharmacy. In Quebec, the public health care plan covers the meds, but there is always a maximum deductible of $80 per month. That's not a huge cost by any stretch, but when you're a starving student with mounting credit card debt, depression and unstable jobs, $80 becomes a concern in a monthly budget, knowing you have to buy them for life, and you can't skip a prescription. A month ago, I called Viiv Healthcare in Canada and the customer rep said there was no copay program, unlike in the US where they are more widespread. I was going to fork $80 per month regardless what happens. So I had to decide between starting ARV anyway and risking to go broke on occasion, or wait to get a better situation (stable income/stable lifestyle) before taking the first prescription home. But 2 weeks ago, I got a call that said my doctor applied for a lesser known "compassion program" offered by Viiv Healthcare, on my behalf, and Viiv accepted the funding! So until further notice, Viiv is going to help me cover the meds for as long as I take Tivicay/Kivexa. This was a huge relief! And I'm thankful for my doctor, who did the paperwork even though I hadn't asked for it. However, I'm a bit disappointed with whoever answered the phone at Viiv and told me there was nothing they could do in Canada. :-/  Turns out, they do have programs in place to help vulnerable HIV patients.

 

Recently, I also took a day out of my schedule and did a "grand tour" of all the HIV organizations that exist in Montreal. I think I visited them all. I opened files at ACCM and Maison Plein Coeur. I met someone at Rezo. I applied to a local charity that runs a food bank for poz living under hard circumstances (they approved me this month, which is great because lately, I'm tired to eat peanut butter toasts every day for a meal). I also got new appointments with a social worker and a nutritionist at a local health center. I'm exhausting every possible support avenue. It's been difficult on my schedule but totally worth it.

 

In the meantime, I also joined the Youth+ social group in Montreal. They had their first meeting last week (a pot-luck dinner). It was much less formal than I anticipated. It was pretty much a friendly dinner and chit-chat around a table. Showing up there alone was nerve-racking but I'm glad I went. I was the only new guy. They all seemed to know each other already, and most are between 25-35 years old. They're definitely further ahead than me, in terms of medication and coping with HIV. I felt behind. But I'll take it one meeting at a time. I wasn't able to socialize well. But they will have monthly discussion groups and social activities this year, so I plan to get to know them better and learn from whatever they personally went through. It was nice to chat openly with poz guys face-to-face. They had no problems telling me which clinic they went to and which meds they were taking. It felt good to be surrounded. The next discussion group is about dealing with prejudice. Perfect for me.

 

But right now, my mind is focused on tomorrow. It feels like the end of something which I can never go back to, and the beginning of something else.

 

A good source of info on different meds is http://www.aidsmeds.com/list.shtml. Kivexa is called Epzicon in the US. One of its components is Abacavir which can cause a serious reaction in some people with a specific genetic marker. The prevalence of this marker is only 1.2% in people of asian ancestry so you should not have a problem, but they should test you for it before putting you on Kivexa + Tivicay. You can read more at http://en.wikipedia.org/wiki/Abacavir and http://www.aidsmeds.com/archive/Ziagen_1589.shtml.

I have been taking Kivexa + Tivicay for a couple of months now and am waiting for the combination pill (it looks like a potential name is Trii) to come out.

I hope this helps.

 

Indeed, they tested me for abacavir, and it came back green, so I'm good to go. I was told it's a fairly new NRTI drug, but it's now part of every standard HIV-1 genotyping test. I'll be taking Tivicay + Kivexa too. Did you experience any side effects when you started a few months ago? I too, am hoping the single-pill combination from Viiv Healthcare arrives sooner rather than later. I heard the official name will be Triumeq.

 

 

When it becomes available in 2015, Triumeq will contain dolutegravir (currently found in Tivicay), and unlike Stribild, Atripla and Complera, will become the only single-pill that contains abacavir instead of tenofovir. I'm not even sure what that means. But it's great to see progress being made every year.

 

Really good news. You have friends here who can try to help by words, but there is nothing better than meeting other people in face to face dialogue, seeing as most communication is non-verbal. Taking it head on and creating something good out of a desperate situation seems is a great way to deal with it and you will find it feels great to be able to help others deal with what you're going through. Indeed helping yourself while helping others. And who knows, you may well find someone special at the social group too. Well done, glad to see you're on a good track.

 

Thanks slowfuck. I think the people on this forum have generally been very supportive and a great resource, especially those who post about their experience with their diagnosis and medication - highs and lows. I believe anything that is left here in written words can potentially help dozens, if not, hundreds of people online. Very few people actively share testimonials or stories about being poz online, but many more seek those stories. They may be invisible lurkers, but they I know they look up sites like this one in order to absorb as much information as they can. Sometimes, that's all they have access to.

 

 

Do they not have someone at the clinic who can give you info on assistance if you are low income? I don't know Quebec, as I am in BC. Here HIV medications are covered 100%. You do have to pay Medical Service Plan premiums like everyone, but those are based upon you income level. I pay at the highest level, and it is still under $70 a month. I am not going to suggest moving to Vancouver because everything here (rent, food etc) is way more expensive than Montreal.
I haven't been coming to this site regularly lately, so I just read through this thread. I would say that more than anything you need to find a counselor you feel comfortable with to deal with your other issues, like the anxiety. HIV is easy to deal with compared to that.

 

In Quebec, the premiums are not adjusted based on income levels, it's $80 for everyone, except those living on welfare (free). The pharmacy is aware I'm having problems, and they say I'm not the only one. I fall in the category of people who are most at risk of being stuck at the cash register one month and not being able to pay for the pills. I can't apply for welfare since I do have a part-time job, but I don't have a steady income either since I'm a full-time student and there's only so many shifts I can work in a month. But because I work a part-time job, there's no private insurance. In a way, I'm paying the same premium earning $600 / month as someone who earns $6,000. That said, my situation is temporary. The diagnosis just came at a bad time in my life. And my clinic was able to get an approval from Viiv to cover my premiums for now, as last resort. I'm so lucky and I will pay it forward, one way or another.

 

You're also right about anxiety. Turns out, my doctor is more concerned about my anxiety and depression than she is about HIV!

[jtonic]

2 weeks now taking Tivicay + Kivexa. So far so good.

No side effect, except mild fatigue and insomnia.

I'm actually impressed how far antiretroviral drugs have gotten.

Next step, the monthly medical visits to check on the viral load (it was approx 13,000/mL the day I started the pills).

 

Edited October 2, 2014 by jtonic

[jtonic]

Went in for blood tests 3 weeks ago, and the moment I was waiting for is there, my doctor told me I'm undetectable! (so it took 6 weeks, although I might have reached the goal earlier than that). I feel like I can finally breathe. The diagnosis was in May. All in all, it took some time. Waiting to start the medication was the worst part. My CD4 count also increased a bit, it was twice at 240 before I started, but 360 more recently.

 

I also gained back some weight after reaching a troubling low. I was only 99 lbs a month ago, went back up slightly to 105 lbs, and the goal is at least 125 lbs by next summer. Seeing a nutritionist is one of the best suggestions I received. I'm now loading up on calories, good fat, proteins and fiber, without changing my daily habits or spending more money on groceries / time on cooking. Sometimes, it's about tiny conveniences, such as cooking eggs in a microwave instead of a pan, or having a bowl of mixed nuts on my desk at work - those little habits can add up over time. As long as I gain weight I'm happy.

 

They also gave me a first set of shots today (flu + pneumonia), followed by Hep A/B and a tuberculosis test in a couple weeks. I'm still taking antidepressants, however, and will keep the same dose for another few months. I still have the occasional downs (loneliness, anxiety, fear of stigma), but I feel healthier again.

 

Finally, I decided to cut back on the sexologist and therapist. I feel like I've gotten the support I needed. I decided to keep only my social worker, nutritionist and I'm also going to my local HIV organization frequently now, every 2-3 weeks, meeting other guys, having group discussions, etc.

 

Felt really relieved coming home, so I wanted to share this update for anyone reading.

[lower_bucks_bottom]

Mazel Tov!

[jtonic]

Is it me or there just aren`t many young poz guys ?

Are they hiding or something? How do I find them?

My experience so far on dating sites (including BBRT) has been... mixed.