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Author Topic: LTR Couple Recently Diagnosed  (Read 4260 times)

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Offline jimbalaya

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LTR Couple Recently Diagnosed
« on: June 04, 2012, 07:19:02 PM »
Hi all!

I'm not sure where to start...my partner and I met when we were 17 and 21, almost 15 years ago now.   Over the years we have had many ups and downs, mostly ups, with a few tragedies thrown in the mix.   In 2004, his brother passed away, and we kicked our lives into gear, went back to school, got degrees and education and are both extremely successful teachers at the same school.  In the past year I have been working towards my Masters Degree in Administration with an eye on becoming a Vice-Principal in the near future.   While we love and adore each other, over the years we have enjoyed some extracurricular fun, but always together (3-ways) never without each other. 

For people as smart as we are, we would sometimes go bare with people that we 'thought' were safe.....Looking back now I could kick myself for being so stupid, I had an Uncle who recently passed away who had HIV/AIDS since the mid 80's, so it's not like I didn't know the dangers, I suppose that I just never thought about it seriously or what the consequences could be, even though I had seen them up close and personal.  (again, how stupid!)   :'(

About 2 months ago, my partner got what we thought was the flu, and it hit him hard for four weeks of continuous fevers, hovering between 100-102.  After getting back test results they considered the possibility of it being Lymphoma, and he was hospitalized.  It was only after he was in the hospital that it came back that he was HIV-positive.  I went that same day to a resource center for a rapid test, and found out I was positive too. 

As many of you can relate, I went into full on panic mode.  It was hard to concentrate at work, all I could think of was how stupid we both were to not always be safe, and it consumed my every thought.  As a teacher it was hard to put effort into my lessons, and on a few occasions I got so stressed out that I had to go throw up in the bathroom, thinking that my life was over.   

Since that time I met with my primary care physician, and my partner and I were both referred to the same ID doctor from different people who claimed he was the 'best around'.  We had our initial bloodwork taken, and meet with him in two days to find the initial results.  My Dr. also gave me a prescription for Xanax to help calm the panic attacks I would get when thinking about what we had.  I will say that over the two weeks since we both tested positive (May 16, 2012--ironically the day that Donna Summer died), I have calmed a bit.  At first I was ready to throw in the towel, drop out of my masters program, and quit teaching.  It felt like my life was over for a short time.  I realize that I'm lucky in that this period lasted a short time.  I'm also lucky that I have a partner to share this with, and we seem to alternate good and bad days.  When I'm down about it, he can lift me up, and likewise. 

I'm beginning to realize that while this completely sucks, there are many worse things that could happen to me, and I can either sit around and hate myself for being stupid, or forgive myself and make the choice now to live in a way that will keep me healthy for years to come.  After all, there are no guarantees in life and who is to say that HIV/AIDS is what will get me in the end.  I could live 30 years and die in a car accident (not that I'm hoping for that)...I only mean to say that I can't see this as a death sentence, just a fork in the road that we will deal with, and at least we can deal with it together. 

The question that I have for now is that we know exactly who we got it from (One drunken night on Grindr from a guy in Florida on vacation).  We can assume that we got it around the same time, as we had both tested neg. months earlier.  My partner had a nasty reaction, lasting four weeks with fevers swollen lymph nodes, etc. meanwhile I've been asymptomatic.   My partner is convinced that this means he has a weaker immune system than me, and in the long run that I will be able to fight off the disease better.  Two doctors in the hospital have assured him that this is not the case and that everyone reacts to acute infections the same way.  I'm curious what symptoms others went through in the beginning stage, and if this does in fact have anything to do with long-term prospects.  I will ask our ID Dr. on Wed. but wanted to hear other real life examples also.

Either way I am determined to stay positive and know that we will fight this together, make whatever lifestyle changes we need to, and live together for many many years to come.  We have good insurance and plan to go on meds as soon as possible, and plan to allow this to make us live healthier, but not change my life goals and dreams.   

Thanks for listening, and I appreciate any feedback/advice you can offer!    ;D

--Jimbalaya

Offline Newguy

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Re: LTR Couple Recently Diagnosed
« Reply #1 on: June 04, 2012, 07:59:03 PM »
Hi Jimbalaya

I am kinda of in the same boat as you are in with respect to being in an early infection stage and so on. I too will start my Masters in September. I also had zero symptoms (minus a nasty syphilis outbreak) which led me to take the HIV test and found out I had HIV. But I am in no way thinking of not doing it because of HIV and you shouldn't either! Although we all can react differently to similar situation, you should probably just carry on as nothing has changed. Because really nothing has changed except you have a retrovirus inhabiting your cells.

99% of the worlds population have viruses inhabiting their cells. Hell I would say 100% except I do not want to generalize. You just happen to have one that has the potential to do serious harm if left untreated. And it already sounds like you and your partner have started the treatment process. Remember, things are different and technology is rapidly evolving. It is not at all unusual for scientists to throw around the eradication of HIV expression around. It is 100% possible, that much is proven but it might take some time to make eradication on a mass scale possible. And I suggest you stay healthy for when that time comes.

I hope this helps, as I am new to all of this and some members have already replied to some of my posts offering great support and great advice. Regarding your comment on being stupid yeah so what? All people make stupid choices some get burnt some don't. Get over it!

All the best

Newguy

Offline leatherman

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Re: LTR Couple Recently Diagnosed
« Reply #2 on: June 04, 2012, 08:05:29 PM »
Two doctors in the hospital have assured him that this is not the case and that everyone reacts to acute infections the same way.  I'm curious what symptoms others went through in the beginning stage, and if this does in fact have anything to do with long-term prospects.
everyone reacts to the initial infections differently - not the same way. Some have a terrible reaction and some have no noticeable reaction at all. Neither reaction nor no-reaction is a predictor of future progression, much less a predictor of anything. Everyone seems to handle HIV and the meds slightly differently.

of course, starting medications at the proper time and maintaining successful treatment basically negates any worry about whose immune system is weaker than the other. Successful treatment (reaching and holding Undetectable viral load) means that you both should plan on living a "normal" lifespan.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #3 on: June 04, 2012, 08:21:21 PM »
Leatherman...thank you...that was actually a typo...the Dr.'s have said that everyone reacts differently...I just can't get my partner to buy into that...he's convinced that it means his immune system is weaker than mine, since I've had zero symptoms....hopefully over time he will let that go....   :)   Thanks for the advice, it is much appreciated.   We definitely plan to do all that we can to let this be a bump in the road, not a dead end.     8)

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #4 on: June 04, 2012, 08:23:35 PM »
@Newguy...thanks for the encouragement...I've already made the choice to continue on with my life goals and not let this hold me back.... and I've forgiven my stupidity.....you are right, we all make bad choices from time to time... sometimes you get away with it, other times you don't......   

Offline Matty the Damned

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Re: LTR Couple Recently Diagnosed
« Reply #5 on: June 04, 2012, 08:27:52 PM »
Leatherman...thank you...that was actually a typo...the Dr.'s have said that everyone reacts differently...I just can't get my partner to buy into that...he's convinced that it means his immune system is weaker than mine, since I've had zero symptoms....hopefully over time he will let that go....   :)   Thanks for the advice, it is much appreciated.   We definitely plan to do all that we can to let this be a bump in the road, not a dead end.     8)

I had no symptoms at seroconversion. I was only detected because my GP had the presence of mind to take a sexual history whenever I had an appointment. When I reported unsafe sexual behaviours she had me tested for a variety of STIs and HIV came back the winner. :)

12 months after diagnosis I had progressed to AIDS. 4 years after diagnosis I had a viral load in the millions and 15 CD4 cells.

My numbers are ok now I'm on treatment but whenever I've stopped taking the medication my VL sky rockets my CD4s crash and I get sick.

I have no doubts that if it wasn't for treatments I would not have lasted these 10 years since I was diagnosed.

So print this out and show it to your partner. :)

MtD

Offline Newguy

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Re: LTR Couple Recently Diagnosed
« Reply #6 on: June 04, 2012, 08:31:26 PM »
At least being HIV positive, there is compassion from the system. I have experienced it so far in my friends and the medical community here in Toronto. It was my dumb choices that got me into this mess but I still get love. Imagine someone convicted of drunk driving. So many people do it but the ones that get caught are scorned for a long time!

Offline Matty the Damned

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Re: LTR Couple Recently Diagnosed
« Reply #7 on: June 04, 2012, 08:34:41 PM »
At least being HIV positive, there is compassion from the system. I have experienced it so far in my friends and the medical community here in Toronto. It was my dumb choices that got me into this mess but I still get love. Imagine someone convicted of drunk driving. So many people do it but the ones that get caught are scorned for a long time!

Not wanting to hijack Jimbalya's thread, but compassion is not in every system. Check this out: http://forums.poz.com/index.php?topic=43658.0

MtD

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #8 on: June 04, 2012, 08:36:27 PM »
@Matty....thanks for the info...while it might make him feel better, it has made me feel way worse!   :P   LOL      I'm glad to hear that you are doing much better on the meds though....and will make sure that we take our meds faithfully so that we can stay healthy.

Offline Matty the Damned

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Re: LTR Couple Recently Diagnosed
« Reply #9 on: June 04, 2012, 08:43:40 PM »
@Matty....thanks for the info...while it might make him feel better, it has made me feel way worse!   :P   LOL      I'm glad to hear that you are doing much better on the meds though....and will make sure that we take our meds faithfully so that we can stay healthy.

That's the key. Don't fuck around with your meds. ;)

MtD

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #10 on: June 05, 2012, 07:23:47 PM »
So, we are headed in for our first appointment with our ID Dr. tomorrow, anxious to get the results, and wondering what he will have to say......it's funny though how in the past couple of weeks I've gone from thinking my life was over, to realizing that things are starting to settle back into normal, and though there will be bumps in the road, I am ready to face them with a positive attitude and continue to live my life with as much normalcy as possible.  I will NOT let HIV define me......

 8)

Offline Cojo

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Re: LTR Couple Recently Diagnosed
« Reply #11 on: June 05, 2012, 07:50:14 PM »
Hey J,

Welcome to the forums and it sounds like given all the circumstances, you have a very realistic and positive (amazing how often we use that word eh?) outlook. I am just over a year into this and have a very similar situation to you - including the teacher and LTR part. I ended up poz, he is neg, thank God.

Your post and the feelings of "should have known better" etc really resonates with many of us. I am still struggling with the guilt of being an educated man who lived through decades of safe sex messages and somehow I failed it all and got it. I can't say that has dispersed completely, but I am trying to reframe the thought around the fact that I was the guy who drew the unlucky straw of the millions of people who dance with risks every day. None of us went looking for it with intention - it found us through letting our guard down in some way through the vehicle of the human condition. I also think that getting "it" while in a LTR adds a further layer of stigma... kind of the ... if you just settled down, were satisfied with what you had and kept it your pants you would never have got it stigma. In a strange way, single folks are seen as taking an understandable risk while seeking a partner where we should have just cocooned ourselves like the  "families" in the burbs!

I think our biggest battle once we are on meds and the treatment works (and it does!!) is to cope and deal with shame and guilt however that manifests itself - at least that is what is my biggest challenge these days.

Keep focused, keep optimistic, remember that with time it will get better and dwell in gratitude for the miracles of medicine in 2012. Be well.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD

Online mecch

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Re: LTR Couple Recently Diagnosed
« Reply #12 on: June 05, 2012, 08:37:45 PM »
My partner had a nasty reaction, lasting four weeks with fevers swollen lymph nodes, etc. meanwhile I've been asymptomatic.   My partner is convinced that this means he has a weaker immune system than me, and in the long run that I will be able to fight off the disease better.  Two doctors in the hospital have assured him that this is not the case and that everyone reacts to acute infections the same way. 

Hello.
I think you have either misrepresented what the doctors told you, to us here, or not understood something.
Everyone does NOT react to the initial HIV infection the same way. You two are an example.  Your bf got very sick, you did not.  Many people have no big reaction to the HIV infection in the beginning.
Secondly, maybe what you mean to say is that the doctor said a severe acute infection is not necessarily a sign of a poor long-term immune response.  This is true. 
Thirdly, you won't know much until you get labs that show how both are you are doing over the coming months.
Fourthly, it does not matter very much if either of you has a "good immune" response or a poor one, for the long term.  Assuming you both have good medical care and can get the HAART when you need it, it just means one of you might be on HAART before the other.  These days, you do not really need to worry about "fighting off the disease."  There is no fighting it off, in the end.  Some people need HAART in a few months, a few years, or many years later.  Its a crap shoot.  When you need the HAART, you take it and it works.  Its the HAART that corrects the death-sentence that HIV otherwise would be.  Not any "fight" you personally can put up.  These may seem like sober words but, in my opinion, its the truth.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #13 on: June 05, 2012, 08:59:51 PM »
Hi mecch,

Thanks for the response!  I had posted earlier, but perhaps you hadn't read it that I had a typo...the two Dr.'s in the hospital had said that everyone reacts DIFFERENTLY not the same.....whoops!   I agree with this completely, it's just getting my partner to understand that and not feel negatively that he has had horrible symptoms while I haven't had any....we meet with our ID Dr. tomorrow and get our first set of numbers so hopefully that will alleviate some of his concerns...I just want him to remain positive and not feel like his is at a 'disadvantage' because of his initial reaction...I firmly believe that a positive attitude is crucial so I want him to remain as positive as possible (about being positive, haha).   

Anyway, thanks for the feedback, and we'll see how it goes tomorrow!

Thanks! 

Jimbalaya

Online mecch

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Re: LTR Couple Recently Diagnosed
« Reply #14 on: June 06, 2012, 05:50:03 AM »
I know someone who had a gut wrenching seroconversion, then his viral load settled down to low hundreds and has remained so for several years now.  With some tests at undetectable!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #15 on: June 06, 2012, 05:22:02 PM »
So, we just got back from our first appointment with our ID Dr. (LOVE LOVE LOVE him!)....unfortunately the lab screwed up and didn't get all of our testing done, which is annoying, but it is what it is....

My numbers are CD4 471, 17% (which he was concerned about), viral load 58,000

My partner was CD4 504, 24% and viral load 186,000 (a few weeks ago in the hospital it was 3 BILLION).   He also thinks my partner has Hep C, but is doing further bloodwork to confirm......

We have to go redo our bloodwork because they didn't do the genotype like they were supposed to so we have to wait 6 weeks before we can start treatment, but everything seemed promising!     8)

Online mecch

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Re: LTR Couple Recently Diagnosed
« Reply #16 on: June 06, 2012, 05:48:10 PM »
Hmm 3 billion?  BILLION?  I had several MILLION and they said that was statospheric.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Matty the Damned

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Re: LTR Couple Recently Diagnosed
« Reply #17 on: June 06, 2012, 06:08:13 PM »
So, we just got back from our first appointment with our ID Dr. (LOVE LOVE LOVE him!)....unfortunately the lab screwed up and didn't get all of our testing done, which is annoying, but it is what it is....

My numbers are CD4 471, 17% (which he was concerned about), viral load 58,000

My partner was CD4 504, 24% and viral load 186,000 (a few weeks ago in the hospital it was 3 BILLION).   He also thinks my partner has Hep C, but is doing further bloodwork to confirm......

We have to go redo our bloodwork because they didn't do the genotype like they were supposed to so we have to wait 6 weeks before we can start treatment, but everything seemed promising!     8)

3 billion or 3 million honey? I wasn't aware that VL tests counted above 5 million copies per mm3.

MtD

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #18 on: June 06, 2012, 06:17:07 PM »
Maybe it was 3 Million...but I asked specifically 3 Billion? and he said yes....either way it dropped a ton over the last few weeks.
 :-*

Offline Matty the Damned

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Re: LTR Couple Recently Diagnosed
« Reply #19 on: June 06, 2012, 06:34:40 PM »
Maybe it was 3 Million...but I asked specifically 3 Billion? and he said yes....either way it dropped a ton over the last few weeks.
 :-*

Well so long as it's heading down. HIV is a bit of a wimpy virus really. HAART is devastatingly effective in suppressing it.

Good stuff, yes? :)

MtD

Offline leatherman

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Re: LTR Couple Recently Diagnosed
« Reply #20 on: June 06, 2012, 06:40:40 PM »
good news for both of y'all on those numbers. neither one of you has to stress about starting meds immediately. although you are both on the cusp - so definitely get that genotype.

have you ever checked out the Lessons section of Aidsmeds? (it's on the gray menu bar, first item second column, under treatment) there's a section on resistance that'll help you understand how the genotype test shows which meds will or won't work with your HIV (depending on who gave it to you and what meds they or others had been on could have mutated the HIV to not be effected by some meds).

while the 17% is a low percentage, what really matter with cd4s and viral load counts are the trends across at least 3 tests. CD4s can change by 100 pts a day so a range of 200-400 is actually possible if you were "normally" at 300. So looking at the trend really tells if your counts are going up or down.

also keep in mind that it really never matters what the exact cd4 count is. I've never met anyone who had their cd4s checked prior to diagnosis, so no one knows what their baseline cd4 count normally is.

And then when push comes to shove, it's all about how well your cd4s work. ;) it took me 12 yrs to get above the AIDS-defining count of 200 and now after 20 yrs of meds I'm just barely over 300 - but I haven't been back in the hospital for nearly 15 yrs, so my 305 tcells are doing exactly what they're supposed to. Who needs 1000 if the 300 keeps you healthy and happy?  :D LOL

that's good news for ya'll about your numbers, and that's good! ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Lad_Liam

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Re: LTR Couple Recently Diagnosed
« Reply #21 on: June 07, 2012, 11:39:25 AM »
Hi jimbalaya and co,
Sorry to hear the news but thanks for sharing. I'm with you and Cojo and the 'known better' / 'you've got a live-in boyfriend' / 'you're a safe sex educator FFS!!' thoughts. I managed to catch it using condoms, so also agree with the short straw analogy Cojo made. (Even with latex, there is that "er" on the end of "safer"...)

It just happened to us. The normal behavior for humans is unprotected sex, the normal behavior for this virus is to transmit in the way it does. No blame or shame really fits in that equasion. I know you're on to this...

Hep c.., good luck with that test to your man, let's hope he fails that one.

Vice principal... Who has threesomes.... Hot. I'm glad u won't let HIV stop that dream.  8)

Let's hope the lab gets it straight so you know where u stand ASAP. Good luck.

Anyway, thanks for sharing your story. Glad you like your ID Dr, it's great to read your enthusiasm on the relationship. I like mine too  :-*

a new dark passenger joins the ride

Offline jimbalaya

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Re: LTR Couple Recently Diagnosed
« Reply #22 on: June 12, 2012, 04:16:26 PM »
Thanks Liam!    ;D

Offline buginme2

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Re: LTR Couple Recently Diagnosed
« Reply #23 on: June 12, 2012, 04:37:25 PM »
Hey,

I also was diagnosed while in a long term relationship.  It is a stressful event however it is something that you can make it through. Look on the bright side, you have each other to count on for support.  Use it.  My partner and I are closer than ever, HIV has become a non-issue as far as our relationship goes.

I also was diagnosed while I was deep into finishing up my masters degree.  At first, it did effect my studies quite a bit.  More because I was obsessing about HIV and not studying.  I was able to get my head together and finished.  In fact, I changed my thesis topic to one that focused on HIV.  Don't let HIV keep you from finishing your studies or limiting your career.  It is doable.

Good luck. 

 


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