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Author Topic: need help  (Read 2479 times)

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Offline AtomicA

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need help
« on: March 25, 2007, 07:22:38 PM »
alright, I know I've been absent for a while but I'm really hoping someone on here can offer some advice. I've been with the most amazing guy for almost 6 months now and we were pretty much inseparable for months before that. He's known about my HIV status since the very beginning and when we decided to start dating we did our best to arm ourselves with information. I took him to the HIV clinic here and we met with a social worker/nurse person to talk about the best ways to keep him from being infected, we did a huge amount of our own research and we laid all sorts of groundrules as to what would happen sexually. Strict condom use, never getting my semen anywhere near a mucous membrane, no sexual contact within an hour of him brushing his teeth, We both started using listerine twice daily to prevent any chance of bleeding gums (and it works fabulously, no one should leave home without it). I also have had an undetectable viral load the entire time we've been together which, I know doesn't mean no risk at all but should count for something right? We also decided that he would get regular blood work (every three months) just so we would always know what was up

anyway, about a month and a half ago he started complaining that his neck was sore. Not a sore throat, but sore neck muscles on either side of his adams apple. It wasn't debilitating or anything and he didn't feel sick otherwise but it turned out to be quite persistant, lasting for well over a week. I suck at dates and thought that it had been three months since his last test - when in reality it hadn't even been two - and suggested that he go and get checked out. Up until that point we had both been totally confident and honest about everything. We hardly even thought about it, though to be honest the thought crossed my mind in a few brief fits of guilt and paranoia. Anyway, I guess my suggestion sowed the seeds of doubt in his brain and we have spent the last month three inches from breaking up. I dont' think it would have gotten this far had his neck not stayed so persistantly sore, going on 9 weeks now I think and he also started noticing he was clearing his throat alot. Having been in his position before I know that no matter how insignificant the symptom may be, if you think you might have the virus all rational thought can go on a long walkabout (anyone ever read the am I infected? forum?).

Here's where we have run in to real problems. Around the same time his neck/phlegm issue started he also increased his cigarette consumption by about 1000% which from my point of view is the only and obvious cause and yet even though he knows this he won't quit for a while to see what happens. He has also had a negative test at 4, 6 and 8 weeks after our last sexual contact and while the lab refused to do the proviral PCR test (go single payer public health systems... the government won't pay for it and we can't pay for it out of pocket even if we wanted to) but came back telling him that a negative 8 week test was conclusive. Part of the problem was a total mishmash of information. He moved here from out of province so has no family doctor and as a result ended up seeing several different docs on walk-in. The first one felt around his neck, told him it was sore, swollen lymph nodes and that he would have to wait at least 3 months to know for sure. The second doctor who gave him the 6 week test told him that not only was it not swollen lymph nodes, that swollen lymph nodes don't hurt and where he had pain there were no lymph nodes anyway, and ALL his lymph nodes were perfectly fine. That doctor also gave him  total blood workup which came back better than normal in most cases, all his lymphocytes counts were exactly what they were supposed to be indicating he wasn't fighting anything off. the third doc who requested the PCR for him told him that all his tests to date meant nothing and he would have to wait 6 months! then when he went for the results and to find out why they had done a regular anti-body test instead of the PCR, she apologized and told him the lab had corrected her in saying an 8 week test was definitive in an otherwise healthy individual (which he is, he NEVER gets sick... not even chicken pox). I have expressed to him that relying on the information that GP's have, who haven't heard anything abotu HIV since they were in med school in the 80's, is a sure fire way to get outdated and nerve-wracking information. That and he's spent alot of time on the net which, as we all know, could convince even the most rational of us that we have brain cancer every time we get a headache. The final point on he medical side of this story was when he called some lab in Seattle, one of the CDC's main HIV research labs (don't remember the name) and managed to speak to a researcher there. This guy told him that they along with several other labs have submitted reports to the CDC telling them to change their 3 month protocol as they have found that a 4 week antibody test in North America is conclusive.

So here's the problem... he still doesn't feel ok. We went from never thinking about this and being totally confident to a small nuclear meltdown in one month. I know I didn't deal with this as well as I could have, partly because I didn't know how to help him, partly because I was really annoyed that he wouldn't do the obvious thing first (quit smoking) and instead chose to manufacture a world shattering scenario in his mind and partly because I know I'm already terrified enough about giving this to him. I know that he doesn't have HIV. I know that with everything that we have been doing he never will get HIV, but he described the past few weeks to me as the darkest, loneliest time in his life and that he had never experienced anything like what he went through before. His entire personality changed and he told me he felt like talking to me about it was messing up our relationship so he shut down and did this all on his own. The only thing is, I was just honest with him, that's the only way I know how to be. I had told him when we started dating that something like this happening scared the hell out of me and that more than anything else, would be the reason HIV would fuck things up. Then a couple of weeks into this panic attack I was pretty blunt (maybe more than I should have been) and said that if we freak out like this every time he gets a cold or the flu that a relationship was not going to be possible. I still believe that and from a purely selfish place I can say that I know I don't deserve to be put through the ringer with guilt and fear, whether I'm doing it to myself or otherwise, no matter how much I love someone. Neither does he.

I just know that if him and I break up, which we are very near to doing, that in another month or so he'll go and get this magical three month test and find out that the best thing that has happened to either of us in years is over because of something that existed purely in the least rational parts of our brains.

Since the doctors can't help him feel better about this and I can't help him feel better about this I was hoping that someone on here had been through something similar. This has to be something that HIV positive/negative couples have faced in the past and figured out some way to get around it. Cuz right now I feel like we're failing some colossal test and I'm sick of crying myself to sleep.
Is there anyone on here that could offer some advice? maybe talk to him if at all possible, what would be ideal is if one of you wonderful people who has had an HIV negative partner for years and years could talk to us and tell us how you overcame this very real, very unavoidable road block. I will never know what it's like to be in his position so I have no idea what to say to help excercise the seed of doubt that keeps blossoming into a nasty tree of fear. 5 months of our relationship were incredible and so were the months before that when he was my best friend. I love him so damn much and I know this is worth saving...

sorry for the novel

Offline Ihavehope

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Re: need help
« Reply #1 on: March 25, 2007, 07:42:21 PM »
It sounds like he has many issues with your HIV and he needs to get over the fears or you need to get over him. It's going to be another rollercoaster ride you didn't sign up for if he doesn't change and I hate to see fellow poz people have to go through more unnnecessary drama. Having a boyfriend must be a wonderful feeling but having him scare the shit out of you every time he feels slightly ill will freak u out. You are the only person who can decide whether he is worth keeping or not, but I personally wouldn't be able to put up with it every time he feels a little under the weather. If you are taking care of him and yourself by using protection then I don't see how he could get infected. Maybe there are trust issues.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline aupointillimite

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Re: need help
« Reply #2 on: March 25, 2007, 08:05:53 PM »
Hmm... I have to agree with Al.

It sounds like anxiety is beginning to psychosomatically present itself in some way.

I have a question... all those precautions... they're very well and good, but I've never been that strict with a negatron partner.  Of course, condoms were a huge deal and used each and every time.

It seems, from your post, like you guys have made HIV a very important issue in the relationship... he might be acting out subconsciously or something.

Whose idea was it to do all of that stuff?
Your tastebuds can't repel flavor of this magnitude!

Offline AtomicA

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Re: need help
« Reply #3 on: March 25, 2007, 08:20:33 PM »
do all what stuff? the testing or the sexual stuff? the testing was all him. the sexual stuff we agreed on. And from this post it might make it seem like this was a big part of the relationship but let's be fair, it's the only part of the relationship I was really talking about. The reason this has been so overwhelming was that before this, HIV was not even a tiny part of our relationship. It's a part of me and something I have to live with so by extension something he has to live with, which at the beginning we decided was OK. I'm the first person he's ever met who's had HIV and definitely the first person he's ever slept with who has HIV. The whole going to the clinic thing was a way for us to get reliable information about risks and to take some of the responsibility off of me as the sole source of information. Before me he knew next to nothing about HIV, now he knows about a thousand times more than the average person. most of the information he has he took upon himself to find as well, part of what is so great about him. I went over all those medical things to illustrate what risks were actually present and what steps have  been taken to deal with said risks because I know people would have told us to do all that anyway.

personally it scares me a little to hear someone say that they aren't careful with the people they're in relationships with. To me, that sounds like a blatant disregard for their wellbeing which is not something I would associate with love.

Let's also be clear that he feels awful about this. He loves me. He doesn't even know why he is feeling this way.

If someone has actually faced an issue like this before, please let me know. I find it hard to believe that in a long term relationship between negative/positive partners something like this doesn't inevitably happen at least once.

Offline Ihavehope

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Re: need help
« Reply #4 on: March 25, 2007, 08:30:35 PM »

You are totally right. I am sure this happends to poz/neg couples more often than we think.

The only thing I can tell you is that is takes a mature, intelligent, self-assured, trusting and wonderful being to be with someone who is HIV poz. Not many neggies are willing to do this so I can tell that he really cares for you and likes you, give him time and if it become to overwhelming for u then you need to decide what is more important to you, having a boyfriend or his and your sanity.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline aupointillimite

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Re: need help
« Reply #5 on: March 25, 2007, 08:34:40 PM »
OK, OK... understood.

It would scare me as well to hear someone say they didn't use condoms with their boyfriend or girlfriend if they were poz... I always did... took a couple other precautions too... but I can't say as I've done everything that you guys did.   

I've had two fairly long term relationships with negatrons since being diagnosed... one lasted almost a year, the other several months months... and nothing like this ever happened per se... it reared its head in far uglier ways.  Blah.

Although, I think it has to do with something very important that you mentioned... you're the first guy he's known who's poz.  One of the guys I dated already knew at least a couple of people who were poz.  It wasn't so strange... and strangely, he was the one who never mentioned the whole poz thing to me... the only neggie I've ever known who was completely cool with everything.

Maybe you guys could get couples therapy or something... I'm sure an ASO near you might be able to help.

Calgary's a large city, right?  Have you tried looking into support groups for serodiscordant couples?
Your tastebuds can't repel flavor of this magnitude!

Offline Central79

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Re: need help
« Reply #6 on: March 25, 2007, 08:47:20 PM »
Hey Atomica

Thanks for your post. I'm positive and my bf is negative - we've been together (on and off - the "off" was when I caught HIV) for 3 1/2 years.

I can relate to what you're saying. My bf has had a couple of bad colds since we've been together, and I catch myself wondering "what if".

It sounds like both of you are on a steep learning curve - for him its being with somebody HIV+, for you both its living with the uncertainty of a possible (though extremely unlikely) chance of transmission. It sounds like you've done all of the right stuff - discussing boundaries, and generally talking it out to each other. It also sounds like you are bouncing the least rational fears of yourself off each other at the moment.

I find that my bf, who is very HIV-savvy, generally takes his cue from me - if I start flipping out, so does he. So I am always ruthlessly rational in front of him when it comes to this stuff. It's in the back of my mind but everything I say and do around him is designed to say "you've got a cold...".

The other thing I think you guys need to do is not let HIV dominate your life together. You've chosen to be with each other, you're minimising the risk, he must accept the (very) small chance of transmission by virtue of being with you. Once you've got that - he should get tested every 6 months as a routine. Testing in response to every cold, bout of the flu, sore neck, or rash is going to drive you both crazy. Testing every 6 months becomes routine, part of him looking after himself, and will make no difference to him if he tests HIV positive - 6 months is neither here nor there in the course of HIV infection - he's not going to seroconvert and progress to needing meds in 6 months.

I'm glad you've found somebody you love. I know it's hard, but try and chill out. You're taking good care of him - and you're communicating well.

All the best,

Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline Robert

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Re: need help
« Reply #7 on: March 25, 2007, 09:55:21 PM »


Relationships take time.  A lot of time and a lot of effort.  You've only been together a relatively short time and perhaps  if HIV wasn't the issue, then something else would be.

Having said that, let me say my partner and Iwere together a long time before I even became positive and we also experienced what you and your partner are going through.  After my diagnosis he educated himself on the virus, transmission, meds, etc.  He also wanted to become part of the solution, so to speak and that was disaster.  For example he wanted come to the Dr with me.  He wanted to keep my pill box up to date every week.  He would wake up in the middle of the night to make sure I was all right.  He was sure every mosquito bite was the onset of the NILE VIRUS.  He was more obsessed than I.  Strangely enough, it wasn't the sex that bothered either one of us.  It was the health issues.    It was just too much of a strain and we were at wit's end.  We both finally agreed to put the virus on the back burner.  He doesn't ask me anymore if I take my pills.  He doesn't ask me about my health.  If he as a cold, I just shake my head and ignore it.  Frankly, I haven't been in such good health since my diagnosis.  No colds.  No flu.  I've just finished putting in a new irrigation system and it almost killed me.  Everyday for the last month I've been collapsing on the sofa from being so damn tired.  And we assumed, correcty, that I was tired from the hard work (admittedly the virus has sapped my energy.)

So I guess what I'm trying to say is to approach your relationship from the point of view that's it's still in the beginning stages and you're still learning from each other.  Also, even more importantly, remember you love him and he loves you and you're going to work it out.  I think once you get through this first scare of possible HIV infection (which will all be for naught) future episodes will be far less dramatic.

don't give up.  be patient.  be really patient.  It' will be worth it.


Offline allopathicholistic

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Re: need help
« Reply #8 on: March 26, 2007, 08:59:01 AM »
Hi AA. I know about crying tears  :'( There's that old saying "You can never be too careful" ...Of course it's up to individuals and couples to decide how much they want to adhere to that saying. When I had a negative boyfriend we used condoms, hygiene and he never went down on me which is fine 'cuz it's not my favorite thing anyway and we only had sex on the weekends mostly. In our case, there was never any stress and this was a 3-year deal. If he had ailments, then I guess stress would've been involved. We were lucky. Well, not lucky enough to make the relationship last beyond 3 years. I often tell people "Oh the poz-neg thing wasn't a factor in the split" but maybe it was and I just don't want to face it.  ???

Anyhue, I want to give you my humble opinion about what you said about being blunt. IMHO, blunt is the way to be! I call it straightforwardness. Anyway, you guys have well-wishes from me, your neighbor to the south {{Hug}}

Offline thunter34

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Re: need help
« Reply #9 on: March 26, 2007, 12:52:26 PM »
As far as getting more communication support for the BF, he would qualify for an account here via his relationship with you.  That would be a start toward him being able to submit his concerns and get feedback.

For the record:  I used to smoke A BUNCH of cigarettes.  You said he had upped his cig intake to like 1,000 cigarettes.  During my puffiest phases, I got a neck dealy that sounds very much like what you described him going through.  And it didn't chill until I chilled off from the cigs.  And that was WAY before HIV ever came into the picture.
AIDS isn't for sissies.

Offline Christine

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Re: need help
« Reply #10 on: March 26, 2007, 05:37:03 PM »
I am positive, my husband is negative. We practice safe-sex, have since day one. There was some anxiety at first, but with knowledge on how hiv is spread, we don't really worry about it anymore. We know we have, and always have practiced safe-sex, so there is not any anxiety with sex now.

I go to a therapist, and Chris has gone a few times with me, and I think that has also helped us deal with the poz/neg status.

My opinion, I would be more concerned about his throat issues because of smoking.

All relationships have challenges. It can be hard sometimes, but it doesn't mean you should walk away. Start talking to each other, and work together to make things better.

Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Lisa

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Re: need help
« Reply #11 on: March 26, 2007, 06:30:53 PM »
I will admit freely that I have not read EVERY post carefully, here.
The first thing that came to my mind was the epicenter of his symptomology. And NOT from an HIV standpoint.
Your initial description sounded very much like edematous parathyroid glands.(can't take the ENT out of me) It seems you have practised safer sex practises from the inception of your relationship. I wanna throw you mad props for that!
I am not totally convinced that this is an HIV related situation.

I know that I have been guilty of relating some of my every day issues to HIV, which has been unfounded, but it is easy to make it take center stage when maladies come up.
Has your partner addressed this with any doctor yet? I would suggest making an appointment with an Otolaryngologist(ENT). The parathyroids can wreak havoc in many aspects of one's life.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline tigger2376

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  • too bad to die youngish!
Re: need help
« Reply #12 on: March 26, 2007, 08:08:57 PM »
My negative partner is aware of, but pretty phlegmatic about my status. Yes, hes careful, of course, but he's accepted, its part of me, and if he wants me, I come with a lot of baggage. we've been living together a year, having sex on and off for three, and he has had to have prophilaxia once. Sometimes, I know,he finds it very hard to understand how everything works, and thinks I blame HIV for too much.
Its going to be hard, I think, for any negative partner. you wouldn't be human if it didn't at the very least make you nervous sometimes.  BUT. Its there, its not going away and he loves YOU. Ask him not to let the HIV win. You have something special, it would be a shame if it ended over something you didn't want or ask for...and may be something you have...but isn't YOU the person. You are still 'atomica', who he fell in love with, not 'atomica who is positive', thats not your name, or who you are, its just something that happened
I hope this makes sense and maybe helps
Don't let it take over, and take him away from you
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!


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