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Author Topic: Boyfriend tested +  (Read 12890 times)

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Offline Carly

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  • Posts: 56
Boyfriend tested +
« on: November 19, 2009, 02:25:29 PM »
Hello everyone, this is my first post, & I just wanted to say "hi" to everyone & introduce myself.  My boyfriend of 6 years just found out last week that he was HIV+, so right now were doing everything we can to educate ourselves & support each other.  Somehow, I've managed to stay negative, but I still have to test in 3 months to know for sure. 

I'm just interested in talking with others who are dealing with this disease & finding out all I can, as well as help others in the process.  We are still kind of in shock right now, but we're adjusting.  I guess we were in the category of people who say "this won't happen to us", but it did.  We're in a small town where the attitude is that HIV is only a "gay disease", & have nothing in the way of support groups, so we've turned to the internet.  He's already had his first appt. with his ID doc & we're just waiting for his lab results to come back to find out if he has to go on meds. 

The only people who know right now are myself & his parents.  That's it.  He still doesn't know if & when he should tell anyone else.  His brothers don't know & none of our friends know.  To be honest, I'm worried about the way they will react.  He's also a nursing student, & he's worried that his fellow classmates/future co-workers will be able to figure out what's wrong with him because he's going to be having doctor's appts. every 3 months & will probably have to take extra precaution when around others with infectious diseases.  But I told him we just needed to take one thing at a time, we've only been dealing with this for a week, & once we get his health back on track we'd worry about everything else.  We were planning on getting married & starting a family, but right now the starting the family thing has been put on hold.  We are still getting married in the summer though, and we're going to try & not let this thing take over our lives & define who we are.  He keeps telling me that he would understand if I left him (even though he always follows it with "but I don't want you to"), but he's really the love of my life & I already decided a long time ago that I wanted to spend the rest of my life with him, so that's not an option.  So we'll just have to adjust.

So, once again, I just wanted to say hello & introduce myself.  I thought it would be best to do that before I started randomly posting in the forums. ;)  From what I've read here already, this site seems to be a wealth of info & support, & I'm looking foward to being a part of it.

Offline Sebastian1969

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Re: Boyfriend tested +
« Reply #1 on: November 19, 2009, 03:03:04 PM »
Carly,
Sounds like you have a lucky boyfriend. 
I can tell you how we have dealt with telling people about my partners HIV.  It is completely up to you and him who and why you tell anyone, there is no reason to tell anyone if you do not think they are going to be supportive.  My partner told his mother when he first found out, she was a nurse and very supportive, and never spoke of it again--just told him to take care of himself and he can live a long happy life.  His mother has since passed, the only people she told, and only after asking my partners premission, were her best friend and his step father.  He has not said anything to any of our/his friends, (except for one) it's really none of their business since he doesn't sleep with any of them. 
It is a very personal decision and my partner does not want anyone wot worry about how he's doing, if he's taking care of himself, and so on--he's a big boy and does not want to cause anyone else any worrying since it's something we can't change, we can only deal with.
As far as appointment--my partner has been going to the doctor monthly until his numbers get up, he has PTO where he works, which means it is no one's business how he uses that time.  a doctor appoint ment once every 3 months is nothing that any friend/coworker should ever notice.  We do not worry about what people think, he just tells them he has an appointment and is taking PTO.
Now you know probably more than you wanted to on how we handle those situations, but truthfully there is no right or wrong way, it is whatever you guys decide to do.  This place is a good place for information and support, I think you will find it useful--I have.

Offline PRCR625

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  • Posts: 20
Re: Boyfriend tested +
« Reply #2 on: November 20, 2009, 01:02:19 AM »
Hi Carly,

Boy, can I relate! My situation is very similar to yours!! If you search my posts you can read my history.
You sound like a VERY strong woman. You should be proud!!

Your boyfriend will be able to handle anything with you by his side. You will both get through this and most likely become closer, just like me and my husband did.

Welcome to these forums. You have no idea what a comforting and knowledgable, loving home it is here. The moderators and taught me so much, the posters have given me hope and courage. This site changed my life, even when I was at my lowest point. I've learned HIV doesn't define or run your life. You do!!

Feel free to PM me any time.

God Bless!!

Chris


Offline Carly

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  • Posts: 56
Re: Boyfriend tested +
« Reply #3 on: November 20, 2009, 03:06:29 PM »
Thank you guys so much for responding.  It really means a lot to know that there are other people out there in the same boat as we are.    Sometimes I just wonder if I am going to be strong enough to handle all of this.  I try not to think about what the future holds & just stay in today.  I've dealt with a lot in my life (divorce, drug addiction, alcoholism, abusive relationships, depression, etc.), so maybe that's why I'm dealing with this so well.  Sometimes I think maybe it hasn't all sunk in yet.  I did a lot of crying the first few days after we found out, but I seem to be holding up better now.  It's almost like things are back to "normal".  I keep thinking it's all going to hit me soon & I'll just break down, but I haven't yet.

We still haven't gotten the results from his bloodwork back yet.  It was done Monday, & his next appt. is on Dec. 3.  His doctor said she'd call him if she felt that he needed to immediately go on meds, & we haven't heard from her yet which I suppose is a good sign.  He's at the dentist this afternoon to make sure that his mouth stays healthy.  He was worried yesterday morning because his gums were bleeding when he brushed his teeth, but I told him not to be too concerned about since everyone's gums get irritated from time to time.  I'm just glad he's taking such a proactive stance towards his health.  We're joining a gym, he's started taking daily vitamins, eating healthier, & he's stopped drinking.  

This just really puts things into perspective, especially when I hear people complaining about things like headaches or how they're not getting along with their neighbors (I'm an apt. manager), & I just want to tell them how lucky they are that that's the only problem they have.  It just kind of makes you think about what's really important in life.

We are trying to handle this thing with humor, & we've always been guilty of making the most inappropriate jokes ever, so that's helped us cope with this somewhat.  The other day he said that he felt like he could smell his own body odor, & that it smelled strange.  Then he blurted out (in a joking manner) "it's the AIDS!  I can smell the AIDS!"  This was on the next day after we found out, & that really gave us a chuckle & helped to cut the tension somewhat.  I also had an interesting experience earlier this week when I had to go buy condoms for the first time in years.  I felt like a teenager, & I kept trying to read the boxes from a distance so no one would see me.  I felt so silly.  This is a small town where everybody knows everybody, & I figured if someone saw me out buying condoms they'd think I was having an affair.  But honestly, I've never really been one to care what other people think, so I guess I shouldn't start now.  Just like Sebastian1969 said, it's none of their business anyway.

Anyway, thanks again for responding, & for letting me vent.  I look foward to being a member of these forums.
« Last Edit: November 20, 2009, 03:10:00 PM by Carly »

Offline Sebastian1969

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  • Posts: 71
Re: Boyfriend tested +
« Reply #4 on: November 20, 2009, 05:52:40 PM »
Funny you said that about condoms--I do the same thing.  I have even considered buying them online, its not like you can try them on in the stores anyway and see which ones fit and feel the best-lol.

This place is great.  Let us know when his results come in.  Our fingers are crossed they come in good.

Offline Carly

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  • Posts: 56
Re: Boyfriend tested +
« Reply #5 on: November 26, 2009, 09:10:03 PM »
Sebastian,

Just wanted to let you know I got your pm & I really, really appreciate your comforting words.  For whatever reason, I can't access the pm functions on here so I didn't even realize I had a message from you until I finally checked my email.  Just didn't want you to think I was ignoring you;)

We still haven't gotten his #'s back yet.  His first doctor's appt. was almost 2 weeks ago & his next appt. is Dec. 3.  His id doc told him that she would call him & have him come in if she felt that he needed to begin meds immediately, & we haven't heard from her so I'll take that as a good sign.

For the last 2 days we've been having to contend with some sort of rash that's broke out on his back, chest & upper arms.  It's driving him crazy.  We can't figure out of it's one of those hiv related rashes or just regular old hives.  He has to wear scrubs to work, & I recently washed them in scented gain detergent.  I normally use the "free & clear" detergent for everything else since my skin's very sensitive, but he's never had an issue so I just thought I would make his scrubs smell nice.  Now I feel horrible since I think that's what might have caused all this misery he's going through.  He's been taking zyrtec, beneadryl(sp?), & slathering on lotion & hydrocortizone cream, & he's still miserable.  I guess if it's not gone by Monday we'll have to call the doctor.

I just hate seeing him miserable like this.  But I guess it could always be worse!

 

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Boyfriend tested +
« Reply #6 on: November 27, 2009, 07:44:38 AM »
Hi Carly, welcome to the forums.

Now that you've posted three times, you'll be able to access your PMs on the website. You have to post three times before having that access - it's to stop people from joining for the sole purpose of spamming via PM. Yes, there really are people out there who do that. Just this morning I stopped someone from joining who has been doing this on other forums. People are strange. :D

Your bf's rash doesn't sound hiv related - your suspicion about the laundry detergent is probably correct. And you're also right to ring the doctor if it doesn't go away within a day or two. It's easy, especially in the early days, to put every little thing down to hiv, but more often than not, it's just something that could affect anyone. However, saying that, whenever something doesn't clear up in a timely fashion, or if there is a high fever involved, it's time to speak to the doctor.

It sounds like the two of you are handling this very well. Don't feel guilty about the black humour - many of us use humour to deal with things. It's like, you gotta laugh, it's more fun than crying. There's nothing wrong with a good cry from time to time though. A good cry can be very cathartic. So can a belly-laugh. :D

If you haven't already, you might want to have a look through the Lessons section of this website. They're written in plain English and contain a wealth of information. When your bf gets his lab results, there's even a tool here where he can keep track of them over time, called Graph My Labs.

Hang in there - it's going to be ok.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Carly

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  • Posts: 56
Re: Boyfriend tested +
« Reply #7 on: November 30, 2009, 10:28:34 AM »
Thanks Ann!  Now I feel like a dummy. :-[  I kept thinking that there must be something I needed to do to gain access to my pm's, but I just couldn't find it anywhere.  But now it all makes sense!

Well, his rash is getting somewhat better.  It keeps moving further down his body (it started out on his back, chest, & upper arms) but as it moves down the parts of the body where it started are getting better.  I made sure to wash his scrubs in All Free & Clear detergent last night! 

Thanks again everyone for your support.  I've got other stuff going on right now too with my job & it's all just stressing me out.  I was listening to the radio in the shower yesterday & that song "Streets of Philidelphia" came on & I just broke down.  I'm feeling a bit better now, but I'll still be happier once we get his numbers back.

I tried to get him to register & join this site, but right now he seems to be suffering from "information overload" & says he just doesn't want to read or look at anything else about hiv right now.  But at least he's doing everything he's supposed to do, so I can't complain. 

I realize that people can live long lives with this disease, but it's the quality of life that scares me.  I try not to think about it, but I can't help it.  I worry about it's going to be like 20 years from now when he's 50.  I'm the worst person in the world about projecting.  I've been seeing a shrink for depression for several years, & when I told him about my feelings he said that was just more reason to enjoy the time we had now.  When he said that it made me think that he wasn't going to be around much longer!  I realize that's not what he meant, but the irrational part of my brain always tries to jump to conclusions.

Anyway, I've rambled on about myself long enough.  But I'll probably post again once we get him #'s.  I'm just glad there are websites out there like this one.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Boyfriend tested +
« Reply #8 on: November 30, 2009, 10:57:20 AM »
Hi Carly,

LOL - don't feel like a dummy! It's not like that information is plastered anywhere. Maybe it should be pointed out in the main Living forum's Welcome thread.

It's not surprising your bf feels like he's suffering from information overload. That's quite common in the early days and it's also a good way to end up more confused then when you started. And that reminds me, when reading things online about hiv, it's always best to check the date of when any article was written. Stick to things written after at least the year 2000. So much has changed since the 1990s. Even better is to stick to articles written in the past year or so, especially when learning about treatments. He's not going anywhere any time soon - he's got plenty of time to learn.

It sounds to me like it might be prudent to get that rash checked out. It's lasting an awfully long time to be detergent related unless he's got a history of sensitive skin. Better safe than sorry.

Having hiv isn't necessarily going to give him a lower quality of life. The meds available now days are fairly side-effect free. I have to say I probably have a higher quality of life now. I do have some hiv related problems - but I'm happier now than I was before diagnosis and to me, that means I've got a better quality of life. Of course this didn't happen overnight and it took some work on my part (navel gazing, if you know what I mean), but he'll get there. Having you by his side will help immensely too.

When does he get his numbers?

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Carly

  • Member
  • Posts: 56
Re: Boyfriend tested +
« Reply #9 on: December 01, 2009, 01:36:53 PM »
Ann-

He gets his numbers back when he goes to see the doctor on Thursday.  His rash still hasn't completely gone away, & now he seems to think he has thrush because of a whitish area on the roof of his mouth back towards his throat.  He's also got this itty bitty flesh colored nodule that has formed in the back of his throat too, & I have no idea what in the hell that is.  Nothing in his mouth looks like the "cottage cheese" pics of oral thrush that I've seen, but he's the one who's in nursing school, so who knows?  He did just go to the dentist last week though, & I think if they noticed anything unsual they would've let him know.  And in a strange twist, the exact thing he's been studying this semester is autoimmune disorders.  Next week his class will be covering HIV.   It's strange how things work out sometimes.

Periodically I've been getting sore throats which are most likely due to nasal drainage from my allergies, but from time to time & I get like some of the people in the "Am I Infected" forums & start convincing myself that I'm seroconverting.  My last test was negative, but that was only a couple of weeks after we had sex.  So now I have to wait until Feburary to know for sure, & I guess in the meantime I'll just have to go on with my life & focus on helping him get better.

He's got class today & tomorrow, so he sees no point in trying to get into see the doctor any earlier than Thursday.  So, I guess we'll know then.  And hopefully the news won't be too bad.
« Last Edit: December 01, 2009, 01:39:17 PM by Carly »

Offline Sebastian1969

  • Member
  • Posts: 71
Re: Boyfriend tested +
« Reply #10 on: December 02, 2009, 02:53:00 PM »
Carly,
I'm hoping the news from the doctor on Thursday is good news and puts you and him more at ease.  I remember how we felt waiting for those first set of numbers.  Waiting is the hardest part, but it is the first step in determining what path to take to insure he is with you for a long time to come.
Hopefully the doctor can just tell your boyfriend, it's a rash and there is nothing else.  I think in the beginning, somehow we try to link it all to the HIV and forget that people get colds, people get rashes, sore throats, and all that crap and in time a happy medium is found and we stop looking for things to "go wrong" because of the HIV but at the same time Watch for things more closely that could cause problems--its a balancing act that comes in time and is always being fine tuned.  Everyone, negative and positive, would be heathier if we all listened to our bodies a little more closely-it's just more important for things to get caught early when someone has HIV.
Don't forget to "live" during this adjustment period, have some fun, and try not to worry.

Offline WildcatCC

  • Member
  • Posts: 91
Re: Boyfriend tested +
« Reply #11 on: December 02, 2009, 03:55:55 PM »
Carly - one day at a time. I know this is easy to say but really, live each day to the fullest and remain as positive and optimistic as possible.

It's great that  he is now watching out for his health and being proactive. I hope you are doing the same. It's never not a bad idea (triple negative?) to focus on a good diet, exercise and drinking less. In focusing on him, make sure you are taking time for you.

My BF (neg) is ultra-sensitive to everything related to my health. He won't let me go near the cat litter box (he read on the internet the dust from the kitty litter will cause me to get PCP again) - which is fine with me as in NO MORE kitty-duty duty  :-*
Everytime I sneeze it's "are you feeling ok?". If I take a mental health day it's immediate cause for concern regarding dementia. He's a peach and I love him but he can be a bit over protective.

One day I joked about it when I could not find my car keys and said "ut oh, it's the AIDs". He didn't speak to me for a day!
Apr  08 - Diagnosed
Apr  08  cd4 8, vl 150k
Meds: Prezista/Norvir/Truvada
June 08 cd4 250, vl 1600
Aug  08 cd4 275, vl 450
Meds: Atripla
Nov  08  cd4  386, vl 255
Jan   09  cd4  415, vl 2100 (spike?)
Feb   09  cd4 460, vl 212
May   09  cd4 515, vl 1200
Aug   09  cd4 717, vl 1535 % 23
Sept  09  cd4 535  vl 1710 % 18
Oct   09  genotype shows mutation. Discussing w/ ID Doc
Nov  09   cd4 480  vl 650   % 19
Dec  09 genotype slight mutation to Epivir and Retrovir
Jan 10   cd4 508 vl 250 (21%)  low vitamin d - on supplement 2000 iu/day
Mar 15 Change to Isentress and Truvada
May 5 cd4 498 vl 1485
June 16 cd4 550 vl undect!!!! (finally dammit)

Offline Carly

  • Member
  • Posts: 56
Re: Boyfriend tested +
« Reply #12 on: December 03, 2009, 05:45:52 PM »
Well, we got the numbers back today & they weren't so good.  His CD4 was 75 & is viral load was 136,000.  But on the "positive" side of things, he does have a type of virus that isn't resistant to any kind of medication.  And the down side, though, is that he has very bad GERD & had to take Prilosec every day or he has a volcano in his stomach.  His doc said it should be okay if he took Prilosec along with his medicine as long as he takes his hiv medication on a routine schedule.  Has any one else ever had any experience with this?  Taking ppi's with your antiviral medication?  His doctor started him on Atripla today.  His insurance only paid around $370 for a 30 day supply, & he ended up being charged around $1400 for the remaining balance, so we're basically scared all to shit about paying for this stuff.  His mother said she would help us, but my god that's a lot money.  We're going to look into getting some sort of assistance here, but I don't think there's too much, if any, available.  Especially since he already has insurance.  If anyone else on this site knows of anywhere in the Kentucky area where you can receive help with medicines, I'd greatly appreciate your imput!

The rash he has is somewhat HIV related (she said it probably was the detergent & that the virus makes people more sensitive to those kinds of things) & the white spot in his mouth is indeed thrush.  So his doc gave him some medicine for that.  I asked him if she told him that this meant he officially had AIDS, & he said she didn't mention anything but he thought that AIDS was no longer diagnosed by CD4 counts (I think he's wrong) but by certain OI's.  I also told him to ask her some questions about sex, namely oral sex, since there seems to be so many contradictions out there.  She told him we would need to use dental dams & condoms (for fellatio).   This has me all confused.  His next doctor's appt. is in February, & I'm just going to take off work & go with him.  He's frustrating the hell out of me with all his "I dunno" or "I'm not sure" or "well, maybe she said" stuff.  He told me after his last appt. that she had told him to use condoms with spermicide, which I thought were a big no no because of the irritation spermicide could cause, & that spermicide didn't kill HIV or any other std's anyway.  Then I posted the question over on Medhelp.com, & the response I got was exactly what I thought.  When I told him about this, he said "Well, maybe she said *without* spermicide" ???  So I'll just go with him next time & talk to her about this stuff myself.  I need to go with him anyway.  

As far as taking care of myself, I'm not really doing anything different than I was before.  I need to exercise more & probably not eat so much junk.  Actually, there's probably a lot stuff I need to do, like quit smoking for one.  Which I had planned on doing when we decided to have children (probably within the next year or two), but I may get a wild hair & do it before.  I don't smoke inside our house anyway, but I do smoke in the car with him, but with the window down.  Should I stop doing that?  I really don't want to do anything to damage his immune system or body any more than it already is.  I'm hoping to have him around for another 30 years at least, but today's news worries me that I may not be that lucky.  His liver enzymes are already elevated & he has protein in his urine, & I know that can't be good.  He didn't ask his doctor about that today & she didn't mention it, so that's just one other thing I'm going to talk to her about.  I'm not trying to be nosy or overbearing, but I do want to keep on top of what's going on & what we need to do.

And WildcatCC, I'm probably a lot like your partner.  I'm always worrying about him eating sandwich meat that's old or inhaling too much paint when he paints his deer stand (I protested against that, but we are in Kentucky after all), or if he's going to catch tapeworm from the dog.  But I do still try to make jokes, & it seems like the more idoitic & ignorant they are the funnier they are.  He wanted to have a drink of my coke to take his Benedryl with the other night, & I said to him "please don't get AIDS on it".   And he's always jacking the heat on the thermostat up to 75, which makes our apt. hotter than hell & causes me to sweat like a pig.  For some reason I find this both hilarious, ridiculous, & worrysome at the same time.

Also, I have another question for you about the cat.  My b/f's doc told him we couldn't have any cats because of the risk of toxoplasmosis.  We're both allergic to cats so we can't have one inside anyway, but I figured when we moved to somewhere bigger & more rural I'd like to have an outside/basement and/or garage kitty.  So is it really okay to have cats?  Is it just bad to have them around when your immune system is weakened?  And lastly, does your name have anything to do with the Kentucky Wildcats, by any chance?
« Last Edit: December 03, 2009, 07:44:10 PM by Carly »

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Boyfriend tested +
« Reply #13 on: December 04, 2009, 08:32:56 AM »
Hello Carly
Sounds like you are starting to get a real handle on things.  While the news on his counts is not good, it does mean that starting the meds is likely to make him feel a lot better over the next few months.  But now is a time when he should be extra careful with his health while his immune system starts to recover -- so if you are a little nervous about his health at first ... well, your timing is good  :)

BTW with a CD4 count under 200, the doctor should have also put him on a medicine to ward off pneumonia.  Usually that will be Bactrim or Dapsone.  Luckily it is lots cheaper than ATRIPLA, but it is important -- pneumonia is probably the biggest problem for people who are diagnosed late and the prophylactic Bactrim is quite effective at stopping it.

The ATRIPLA is an expensive drug though.  It is probably worth while for you to hook up with a local ASO to talk about whether your boyfriend can get assistance with the costs through ADAP.  ADAP (AIDS Drug Assistance Program) is federally funded, but each state administers it, so some of the provisions vary from state to state.  Your local ASO should be up to date on what is available in your state.  You can find a local ASO by using the look-up function on this site -- here's a link to that page : http://directory.poz.com/

If ADAP can't help, there are also patient assistance programs run by the drug companies.  The ATRIPLA one is here http://www.bms.com/products/programs/pages/atripla.aspx

Best wishes
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Ann

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Re: Boyfriend tested +
« Reply #14 on: December 04, 2009, 11:08:48 AM »
Hi Carly, sorry to hear his numbers weren't better.

Condoms with spermicide are a no-no. (it's usually nonoxonol-9, aka N-9) There were some studies a few years back that showed N-9 killed hiv in a test tube, but you're right in thinking it can cause irritation to the receptive partner. This irritation can make transmission more likely if there is an exposure to hiv through a condom break, for example. Some doctors latched on to the in-vitro studies and never noticed the subsequent reports that dispelled the notion of any protective properties of N-9. It is quite possible that this doctor is one of those people, as her other prevention advice is also outdated.

Dental dams? Forget about it. There's no way he's going to transmit his virus to you if he goes down on you. Not only is saliva not infectious, but it also contains over a dozen different proteins and enzymes that damage hiv and render it unable to infect. Dental dams when YOU are the hiv negative one is just plain silly. It's no different than kissing, and kissing is NOT a risk. As for you going down on him, if you have good oral health, I wouldn't worry about it because of the protective properties of saliva. If this worries you at all or if you have doubts about your oral health, abstain from blowjobs until his very high viral load comes down. Once he's undetectable, I wouldn't worry.

One thing that may help you put the safer sex question into perspective for you is this - you've been with him for six years and you're still hiv negative. All you really need to do in order to remain hiv negative now is to use condoms for intercourse. There have been long-term studies of couples where one is positive and one is negative. In the couples who used condoms for anal or vaginal intercourse, but no barrier for oral activities, not one of the negative partners became infected with hiv. Not one.

Once his viral load becomes undetectable and stays undetectable for six months, you can start thinking about that family you want to start. When he's undetectable, you can consider conceiving the natural way. We'll cross that bridge when the time comes. ;)

I wouldn't worry about smoking in the car - you're already doing it with the window down, and I'm sure it's not like you spend eight hours a day in the car with him or anything. Try to not fret about the little things like this.

How experienced is this doctor? Some of her advice is just so 1980s. Like telling you you can't have cats. ::) I've got three and there are loads of other members here who have cats. The only thing with cats - and this won't apply to you as you're not planning on having them in the house - is that you need to observe strict hygiene practices when cleaning the litter tray. Toxo is found in their feces, so it's only their feces you need to worry about. Wear gloves, wash your hands, and don't inhale any dust that may result from the litter being dumped into a bag. Not difficult. Same thing with the dogs - practice good hygiene especially if you have to handle their feces. Do you worry about getting tapeworms from them? He's no more likely than you to get them.

I'm glad you're going to his next appointment with him. Make sure you take a little notebook and pen with you and write down what is said about various things. It's way too easy to think "I'll remember that" but as soon as you walk out the door, you find you can't remember exactly what was said. That's probably what has been happening to your bf. It also helps to have questions written down before hand because they're just as easy to forget as the answers. I still do this to this day, after years of doctor appointments. I write the question down and leave a space for the answer before writing the next question down. This way, I can tell at a glance if all my questions have been answered. The blank space will be filled in. There was even a time when I used black for questions and blue for answers - back when I was still kinda lost and easily confused. :D

In light of his elevated liver enzymes, make sure he's been screen for hep B and C. All positive patients should be screen for both of these types of hepatitis anyway.

I can't offer any financial advice as I'm not in the States, other than to echo A's suggestion of getting in touch with your local ASO. When you do speak to them, I'd also ask about who is a more experienced hiv doc in your area. Going by some of the things the current one has said, she either isn't keeping herself up-to-date or she's inexperienced, or both. I'm shocked by any doctor today who would lay down a blanket statement like "you can't have cats".

Good luck and keep us posted.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Carly

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Re: Boyfriend tested +
« Reply #15 on: December 07, 2009, 10:05:08 AM »
Hello Carly
Sounds like you are starting to get a real handle on things.  While the news on his counts is not good, it does mean that starting the meds is likely to make him feel a lot better over the next few months.  But now is a time when he should be extra careful with his health while his immune system starts to recover -- so if you are a little nervous about his health at first ... well, your timing is good  :)

BTW with a CD4 count under 200, the doctor should have also put him on a medicine to ward off pneumonia.  Usually that will be Bactrim or Dapsone.  Luckily it is lots cheaper than ATRIPLA, but it is important -- pneumonia is probably the biggest problem for people who are diagnosed late and the prophylactic Bactrim is quite effective at stopping it.

The ATRIPLA is an expensive drug though.  It is probably worth while for you to hook up with a local ASO to talk about whether your boyfriend can get assistance with the costs through ADAP.  ADAP (AIDS Drug Assistance Program) is federally funded, but each state administers it, so some of the provisions vary from state to state.  Your local ASO should be up to date on what is available in your state.  You can find a local ASO by using the look-up function on this site -- here's a link to that page : http://directory.poz.com/

If ADAP can't help, there are also patient assistance programs run by the drug companies.  The ATRIPLA one is here http://www.bms.com/products/programs/pages/atripla.aspx

Best wishes
A

Thanks for the info on the Atripla.  My boyfriend is going to try & get assistance directly through the drug company, & we also found a local AIDS resource/assistance place locally that's ran by some church.  Hopefully, one of these two will work out.  The people here just seem so out of touch!  The first person he called was our local HIV resource person at the health department.  She was the lady they sent in to talk to us the day of his diagnoses, & was of absolutely no help at all.  But my b/f finally swallowed his pride & called her the other day to make an appt. to meet with her so she could do her "investigation", which I'm assuming consists of giving names of previous partners.  When he called her, she immediately started blabbing about what a busy week she had had, & how she had had 3 positives in the past week.  My b/f got a little irritated & just wanted to say "but enough about my problems, tell me all about yours".  But 3 positives in one week does seem like a lot for this area.  But that's no big suprise, since the people around here breed like feral cats anyway.  The he called the other lady with the church based assistance place, whom he believes has an addiction to pain medication because of the way she spoke.  One of the first questions she asked him was "have you applied for disability yet?".  WTF?  Does that mean that everyone with HIV should just apply for disability & wait to die?  Sheesh.  But hopefully we can at least get some help from these weirdos.

And no, the doctor did not put him on Bactrim or Dapsone, just some antifungal stuff for his thrush & jock itch.  He said he asked her about getting a pneumonia shot, & she told him there was no need.  So now I'm starting to get worried, but he doesn't seem too concerned so I guess we'll just have to wait & see.

Offline Carly

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Re: Boyfriend tested +
« Reply #16 on: December 07, 2009, 10:16:09 AM »
Hi Carly, sorry to hear his numbers weren't better.

Condoms with spermicide are a no-no. (it's usually nonoxonol-9, aka N-9) There were some studies a few years back that showed N-9 killed hiv in a test tube, but you're right in thinking it can cause irritation to the receptive partner. This irritation can make transmission more likely if there is an exposure to hiv through a condom break, for example. Some doctors latched on to the in-vitro studies and never noticed the subsequent reports that dispelled the notion of any protective properties of N-9. It is quite possible that this doctor is one of those people, as her other prevention advice is also outdated.

Dental dams? Forget about it. There's no way he's going to transmit his virus to you if he goes down on you. Not only is saliva not infectious, but it also contains over a dozen different proteins and enzymes that damage hiv and render it unable to infect. Dental dams when YOU are the hiv negative one is just plain silly. It's no different than kissing, and kissing is NOT a risk. As for you going down on him, if you have good oral health, I wouldn't worry about it because of the protective properties of saliva. If this worries you at all or if you have doubts about your oral health, abstain from blowjobs until his very high viral load comes down. Once he's undetectable, I wouldn't worry.

One thing that may help you put the safer sex question into perspective for you is this - you've been with him for six years and you're still hiv negative. All you really need to do in order to remain hiv negative now is to use condoms for intercourse. There have been long-term studies of couples where one is positive and one is negative. In the couples who used condoms for anal or vaginal intercourse, but no barrier for oral activities, not one of the negative partners became infected with hiv. Not one.

Once his viral load becomes undetectable and stays undetectable for six months, you can start thinking about that family you want to start. When he's undetectable, you can consider conceiving the natural way. We'll cross that bridge when the time comes. ;)

I wouldn't worry about smoking in the car - you're already doing it with the window down, and I'm sure it's not like you spend eight hours a day in the car with him or anything. Try to not fret about the little things like this.

How experienced is this doctor? Some of her advice is just so 1980s. Like telling you you can't have cats. ::) I've got three and there are loads of other members here who have cats. The only thing with cats - and this won't apply to you as you're not planning on having them in the house - is that you need to observe strict hygiene practices when cleaning the litter tray. Toxo is found in their feces, so it's only their feces you need to worry about. Wear gloves, wash your hands, and don't inhale any dust that may result from the litter being dumped into a bag. Not difficult. Same thing with the dogs - practice good hygiene especially if you have to handle their feces. Do you worry about getting tapeworms from them? He's no more likely than you to get them.

I'm glad you're going to his next appointment with him. Make sure you take a little notebook and pen with you and write down what is said about various things. It's way too easy to think "I'll remember that" but as soon as you walk out the door, you find you can't remember exactly what was said. That's probably what has been happening to your bf. It also helps to have questions written down before hand because they're just as easy to forget as the answers. I still do this to this day, after years of doctor appointments. I write the question down and leave a space for the answer before writing the next question down. This way, I can tell at a glance if all my questions have been answered. The blank space will be filled in. There was even a time when I used black for questions and blue for answers - back when I was still kinda lost and easily confused. :D

In light of his elevated liver enzymes, make sure he's been screen for hep B and C. All positive patients should be screen for both of these types of hepatitis anyway.

I can't offer any financial advice as I'm not in the States, other than to echo A's suggestion of getting in touch with your local ASO. When you do speak to them, I'd also ask about who is a more experienced hiv doc in your area. Going by some of the things the current one has said, she either isn't keeping herself up-to-date or she's inexperienced, or both. I'm shocked by any doctor today who would lay down a blanket statement like "you can't have cats".

Good luck and keep us posted.

Ann

Okay, I'm not really, sincerely worried about him catching tapeworm from my dog. :D  The logical part of me knows that's not possible, but the irrational part of my brain sometimes tries to tell me otherwise. 

And when I told my b/f about his doc's advice being outdated, his thought was that no doctor was going to advise against having safe sex, so that's probably why she suggest everything she did.  She does see most of the HIV patients in this area, & I've had other doctors recommend her to me, but I just don't know about this.  Maybe I'll feel better when I go talk to her myself.  I do worry about him getting pneumonia though, but she doesn't seem to see it as a concern & that really worries me.  Especially considering that he works in a hospital setting with lots of sick people.  She did advise him to get his flu shot & H1N1 flu shot, which he did.  So I guess at least she knew that much.

When we first started all this, our main concern was getting him to a specialist, any specialist really, so we could get him started on whatever kind of treatment he needed to be on.  We (myself & his parents) said that if we didn't like the doc he was seeing we could look for another one later, but right now we just wanted to get him on the path to getting better.  So I guess that's what we're doing now.  I just can't help but be worried.  He's lost sooo much weight & still doesn't have much of an appetite.  He's been on Atripla for about 4 days, & the only side effects he's having are headaches & vivid dreams, which is good I suppose.  It just scared me to death this morning when he put on his size 32 jeans (the size he normally wears) & was able to pull them an inch & a half away from his waist.  I keep thinking I'm going to lose him to soon, & that terrifies me.  Every time I get on the internet at home & mess around or stay up later than him watching television, I feel guilty because I think I should be spending all that time with him.  I keep hoping for the best, but I'm just still so terrified.  Hopefully in time he will start to get better & we can start to live a somewhat normal life.  I just wish that would hurry up & happen now!  But I know it won't, so I'll just have to accept that & take things as they come, I suppose.

And thanks again everyone for your responses.  You guys have no idea what a big help you've been in our lives.

Offline Assurbanipal

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Re: Boyfriend tested +
« Reply #17 on: December 07, 2009, 01:15:09 PM »
And no, the doctor did not put him on Bactrim or Dapsone, just some antifungal stuff for his thrush & jock itch.  He said he asked her about getting a pneumonia shot, & she told him there was no need.  So now I'm starting to get worried, but he doesn't seem too concerned so I guess we'll just have to wait & see.

Carly

Ann expressed some doubts about his doctor that I had been thinking about saying as well, and that he was not put on Bactrim is really quite concerning.  This is quite basic  HIV care and carries the strongest level of recommendation for medical practice.

The National Institutes of Health guidelines for treating the illnesses that come with HIV recommends Bactrim at under 200 tcells as an "AI" recommendation.  That's the strongest level they give -- "A" means "Both strong evidence for efficacy and substantial clinical benefit support recommendation for use. Should always be offered." and "I" means firmly supported by science rather than just customary practice "Evidence from at least one properly-designed randomized, controlled trial."  http://aidsinfo.nih.gov/contentfiles/Adult_OI_041009.pdf

Pneumonia is not to be trifled with.  For people who are diagnosed late like your boyfriend (and like me) there is a period of initial health risk until the medicines kick in and during that time pneumonia is probably the biggest killer and cause of long term disability.  I'm fine now, but I spent 2 months on oxygen support because of PCP -- part of them in intensive care; other people on these boards have continuing lung capacity problems from pneumonia years later.  AND IT CAN BE AVOIDED! with a simple dose of Bactrim.

Perhaps it is just poor communication; maybe there is some issue of nursing student vs doctor power thingie / head trip going on....  But in his shoes I'd be seriously checking out other doctors.  A (partial) list of HIV  specialsits is maintained by American Academy of HIV medicine  www.aahivm.org

Sorry to yell.  But this is one of those serious, he could die or have permanent lung damage items -- and the fix is both easy and non-controversial.

Best wishes
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Inchlingblue

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Re: Boyfriend tested +
« Reply #18 on: December 07, 2009, 01:47:28 PM »
Carly:

Reading your posts is very inspiring, you come across as very kind and very supportive of your boyfriend as well as smart and strong.

I did a little Google search about ADAP in Kentucky and the news is not good, they have the longest waiting list of any ADAP in the country (100 people).

Is it possible that your boyfriend's co-pay for Atripla is that high until a deductible is met and then it goes lower? That's how it is with me, initially high then becomes just $25. when deductible is met.

Is it possible to switch to a different plan (that would have coverage more appropriate to his needs) even if the premiums are higher?

I highly recommend getting on that ADAP list ASAP, you never know, they may get the funding soon and be able to do away with the waiting list.

Another option is generic Atripla, it's called Viraday. It's produced by a very reputable company in India called Cipla. There are several threads about it if you do a search for Viraday and several of those threads include information about online pharmacies where it can be purchased. The cost is waaaayyyy lower than Atripla (I think about $165/month or even less if you get 3 month's supply).

I think the co-pay assistance for Atripla will pay up to $200./month and it might pay retroactively if you already paid for a prescription.

There is also a program where the pharmaceutical company supplies the meds free of charge for a period time, you should ask about that. The ADAP counselors should have info. or call Bristol-Myers directly, link below.

There are also ways to possibly take fewer tabs of Atripla per week but he needs to be undetectable for a few months before you could even consider that so it's not worth discussing now (too much info!), just want to mention it for now.

Remember that once he starts meds he should not just stop since this could cause resistance to develop.

If you can't find the Viraday info., please feel free to PM me.

Keep us posted!

LINK (TO BAD NEWS ABOUT KENTUCKY ADAP):

http://www.poz.com/articles/kentucky_adap_waiting_hiv_1_17517.shtml

LINK (TO ATRIPLA CO-PAY ASSISTANCE INFO):

http://www.natap.org/2009/newsUpdates/042709_01.htm
« Last Edit: December 07, 2009, 01:52:10 PM by Inchlingblue »

Offline Sebastian1969

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Re: Boyfriend tested +
« Reply #19 on: December 07, 2009, 03:47:18 PM »
Carly,
Sorry to hear the numbers were lower than everyone was hoping for, at least now you guys know and have a starting point and you guys can move forward and see his medication take hold and his VL come down and his CD count go up.  When my partner got his numbers back the first time his VL was 190,000 and his CD was 105, close to where your parners are at, after less than 30 days on Atripla he was at 800 VL and CD was 156.  It is my understanding from talking to the doctor that the CD count goes up slower at the begining until the VL is down.
Check out his insurnace plan, maybe he has a deductable for prescriptions and up until now he never met it or something.  My partners insurance for 2009 sucks, he has a 2000.00 deductable which includes prescriptions and then a 5000.00 maximiuim out of pocket, within three months we reached the 5,000.00.  His insurance for 2010 is better, but the ATRPRLA has to be ordered through United Heathcare--his insurance company, not the local pharmacy or they won't cover it.  Since your bf has does have insurance--call the insurance company and just ask what the Atripla falls under, for example, Untied Healthcare classifies it as a specialty drug, therefore it falls under his Medical Plan, where Aetna classified it as a prescription and it fell under his prescription plan.  Do some checking and don't be afraid to ask more than one person when you call, I had to go through three people before I was comfortable in the information they gave me and until I got a person that knew what they were talking about.
We both have gone to doctor appointments, and it helps to have two sets of ears.
I have to agree--call the doctor and ask why he is not on Bactrim until his CD count gets higher, I have always heard CD counts less than 200 mean you are on BACTRIM or another type of antibiotic until they are higher--this will help to fight OI from occuring, and will help with the healing of the jock itch and thrush.  This is something I would do sooner rather than later, and not wait until the next appointment, if your doctor doesn't feel it is benefcial, just tell them, that you and your boyfriend feel differanty and would like it prescribed.
Hang in there, keep us posted on how you and your boyfriend are doing.


Offline Carly

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Re: Boyfriend tested +
« Reply #20 on: December 07, 2009, 06:19:04 PM »
Well, this is my understanding of how his insurance works.  He gets his insurance through the university he attends, & it's not the best.  He can go to their health clinic there for free, but his insurance pays 80% of his visits to anywhere else.  From what we have gathered, his insurance has a $250 limit on prescriptions FOR THE YEAR.  Which is odd, considering that they paid $340 on his Atripla & his copay for his antifungal was like, $30.  He thinks this is because the insurance company might have some sort of discount program going on with Walgreens (where he gets his scripts filled) & that's why they paid $340 instead of $250 on his Atripla.

I turned into an old mother hen this afternoon & made him call his doctor today & ask her if he needed to be on Bactrim & if not then why.  She wasn't in, but is going to call him back tomorrow.  He did speak with a nurse though, & the only thing she could tell him was that the doc did have some of her other patients on Bactrim, but some she did not.  I just want to know what her reasoning is.

She's evidently supposed to be the shit in this area when it comes to infectious diseases.  I researched her online & found out that she formed the first Infectious Disease practice in south central Kentucky way back in the day (1989, actually), is the director of infection control & epidemiologist at both our local hospitals, her publications & grant funding during her fellowship at someplace in South Carolina involved both bench & clinical research, has been an active medical educator for this region, continuing in clinical publications, investigational new drugs, & a HIV educator for the Kentucky Cabinet for Human Resources, & her clinical research interests include antimicrobial agents, bacterial & viral infections, antibiotic resistance, effective empiric antibiotic therapies & hospital epidemiology.  And oh yeah, I almost forgot: she has 2 kids & celebrated her 25th year of marriage in 2006. ::)

And this is the same woman who told us not to have cats & to use dental dams.  I just don't know what to think.  I almost feel like she's gambling with my boyfriend's life, & it pisses me off.  But just by looking at her credientials it would seem like she should know what she's doing.  Maybe there's some sort of method to her madness.  Who the hell knows?

Offline Inchlingblue

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Re: Boyfriend tested +
« Reply #21 on: December 07, 2009, 06:22:11 PM »
Just in case, you might want to search this website to see if there are other HIV doctors in your area:

www.aahivm.org

You can search by zip codes for doctors nearby.

Offline Carly

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Re: Boyfriend tested +
« Reply #22 on: December 07, 2009, 06:29:06 PM »
Carly:

Reading your posts is very inspiring, you come across as very kind and very supportive of your boyfriend as well as smart and strong.

Lol, you're making me blush.  I do try my best to be kind & supportive, & I want to educate myself as much as possible.  As far as being strong, well, that's something I'm not so sure about.  I guess I haven't completely broken down yet & become a sniveling mess of a human being, so that's a good sign!  The way I look at the whole situation is, the man I love is sick, & I need to support him & take care of him right now.  I suppose if might be different if it were a situation where he had cheated on me & brought this virus home to us (as has happened in some of the stories I've read on this site), but that's not the case.  I know he contracted it prior to us getting together, & I could just as easily have done the same as I've engaged in risky behavior myself in the past.  So there's really no point at being angry & point fingers, as it won't get anyone anywhere.  If I were in his shoes, I would expect the same from him.  I can't abandon the person I love in their time of need.  We're not married (yet), but we've been together long enough that we've decided we want to be life partners, & sickness is just something that goes along with that, unfortunately.  But thanks for the nice compliments, though.  I'm glad I can be inspiring to others, as I'm having a difficult time inspiring myself!

I think the co-pay assistance for Atripla will pay up to $200./month and it might pay retroactively if you already paid for a prescription.

There is also a program where the pharmaceutical company supplies the meds free of charge for a period time, you should ask about that. The ADAP counselors should have info. or call Bristol-Myers directly, link below.


LINK (TO ATRIPLA CO-PAY ASSISTANCE INFO):

http://www.natap.org/2009/newsUpdates/042709_01.htm

We are checking into this right at this moment, actually.  I told him to go ahead & keep his appt. with the other lady for ADAP, though, just in case.  Thanks for the info!

Offline Carly

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Re: Boyfriend tested +
« Reply #23 on: December 07, 2009, 06:31:49 PM »
Just in case, you might want to search this website to see if there are other HIV doctors in your area:

www.aahivm.org

You can search by zip codes for doctors nearby.

Thanks for the link.  I've got it bookmarked.  I notice there were several doctors listed in Louisville, KY, which is about an hour & a half away from us.  I know he'd hate to have to drive that far for doctor's appts, but that may end up being something he just has to suck up & deal with.  If this crazy cat hating lady doesn't work out, we'll be checking into some of the docs in Louisville.

Offline Inchlingblue

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Re: Boyfriend tested +
« Reply #24 on: December 07, 2009, 06:45:59 PM »
Here is a thread from one of the forum members who has been able to get his meds for free directly from the pharmaceutical company, it might have some useful info.

Keep in mind he is on the same meds that comprise Atripla but he takes it separately, Sustiva and Truvada. It's the same thing, just two pills instead of one.

LINK:

http://forums.poz.com/index.php?topic=28752.0
« Last Edit: December 07, 2009, 06:50:43 PM by Inchlingblue »

Offline Carly

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Re: Boyfriend tested +
« Reply #25 on: December 08, 2009, 09:15:07 AM »
Here is a thread from one of the forum members who has been able to get his meds for free directly from the pharmaceutical company, it might have some useful info.

Keep in mind he is on the same meds that comprise Atripla but he takes it separately, Sustiva and Truvada. It's the same thing, just two pills instead of one.

LINK:

http://forums.poz.com/index.php?topic=28752.0

I showed this thread to him, & he said that this was what he is filling out paperwork for right now & is sending it in tomorrow, I think.  He has an appt. on Thursday to see about going through the state's program, but he seems to be more interested in getting his meds directly from the pharmaceutical company.  Hopefully one or the other will work out.  I'm just wondering how those places count income.  We live together, but we're not married.  His technically doesn't have any income except for his student loans.  I've worked for government assistance programs all my life, namely rental assistance.  I know that we require proof of income for all household members, & the same applies to food stamps.  I guess we'll just cross that bridge when we get there.

Thanks again for all the info.  It's been *very* helpful.

Offline Carly

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Re: Boyfriend tested +
« Reply #26 on: December 08, 2009, 02:34:03 PM »
Well, we got a voicemail back from his doctor today & she basically told us the following:  that she hadn't put him on Bactrim because she felt that the odds of him getting pneumonia were very low due to the fact that 1.) he hasn't had any issues with this type of thing previously & 2.) she thought the odds of him getting pneumonia between now & the time when his immune system reconstitutes itself were very low.  She said this was sort of a wait & see thing, & that she'd be happy to write him a prescription, but she really didn't see the need & didn't want to subject him to any more medicines & their side effects than necessary right now.

So, what do you guys think?  Does she seem to know what she's talking about?

Offline Inchlingblue

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Re: Boyfriend tested +
« Reply #27 on: December 08, 2009, 03:26:19 PM »
Carly,

I hate to tell you but this woman does not know what she is talking about in my humble opinion. You don't have to take my word for it. The official US Guidelines are online and they state:

Before the widespread use of primary PCP prophylaxis and ART, PCP occurred in 70%--80% of patients with AIDS (85); the course of treated PCP was associated with a mortality of 20%--40% in persons with profound immunosuppression. Approximately 90% of cases occurred among patients with CD4+ counts of <200 cells/ÁL.

So he has a very high probability of getting PCP, given the state of his immune system at the moment.

They recommend:

HIV-infected adults and adolescents, including pregnant women and those on ART, should receive chemoprophylaxis against PCP if they have a CD4+ count of <200 cells/ÁL (AI) or a history of oropharyngeal candidiasis (AII) (32,85,86). Persons who have a CD4+ cell percentage of <14% or a history of an AIDS-defining illness, but do not otherwise qualify, should be considered for prophylaxis (BII) (32,85,86).

They further explain what medications are recommended as prophylaxis. This can be found in the section called "Preventing Diseases."

Here is the link for the CDC Guidelines:

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr58e324a1.htm

Other great sources are Dr. Joel Gallant and the doctors on thebody.com "Experts Forums." You can ask them medical questions as well as search archived questions.

LINKS:

http://www.hopkins-aids.edu/q_a/index.html?categoryId=9352&siteId=7151

http://www.thebody.com/content/art40482.html
« Last Edit: December 08, 2009, 04:00:58 PM by Inchlingblue »

Offline Assurbanipal

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Re: Boyfriend tested +
« Reply #28 on: December 08, 2009, 03:54:36 PM »
Carly

Not everyone responds immediately to ATRIPLA with a big increase in tcell count.  The (big) majority do, but not everyone.  So the doctor is putting his health at risk if he is among the few who do not respond.  Furthermore, the typical recommendation is to stay on Bactrim until the CD 4 count has been above 200 for 3 months. 

Primary pneumocystis prophylaxis should be discontinued for adult and adolescent patients who have responded to ART with an increase in CD4+ counts to >200 cells/μL for >3 months (AI). 
(Next page of the same source as before)

Since his counts are currently under 200 he should be on Bactrim for a minimum of 3 months, longer if he takes a while to get counts above 200.

So, definitely have her write up the Bactrim prescription and get it filled.  No need to tell her that you are also looking for a new doctor til you have found one.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Inchlingblue

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Re: Boyfriend tested +
« Reply #29 on: December 08, 2009, 04:02:16 PM »
Keep in mind there are a small percentage of people who can't take Bactrim if they are allergic to sulfa drugs, the guidelines address that and specify alternatives.

Offline edfu

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Re: Boyfriend tested +
« Reply #30 on: December 09, 2009, 02:02:14 AM »
He absolutely must be on Bactrim or an alternative--ASAP.  The doctor is incompetent; there are no other words for it. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Carly

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Re: Boyfriend tested +
« Reply #31 on: December 10, 2009, 09:46:16 AM »
Goddamit. >:(  So basically my boyfriend is having to deal with a life threatening disease & has ended up in the hands of an incompetent doctor.  Awesome. ::) 

I talked to my boyfriend about this & showed him the guidelines & whatnot, &  I even went so far as to ask the question to one of the doctors in the "ask an expert" forum at thebody.org, who told me pretty much the exact same thing that all of you have said.  My boyfriend's response was basically that his doctor had a reason for doing what she's doing, & that he had no reason not to trust her.  He also doesn't want to take any more medications than he absolutely has to.  He said that because he is a nursing student he's always doing self-assesments on himself anyway, so if he felt like something was wrong he would see the doctor immediately.  So, bottom line, his mind is made up.  This is how he wants to do things, & unfortunately no one can make someone else do anything that they don't want to do, so I guess I'll just have to accept his wishes & hope for the best.

I did tell him that if he did end up getting sick with PCP, his doctor would probably die.  At my hands.  Because I will kill her.   Well okay, maybe not literally, but I will make her fucking understand that's she's an incompetent fuck up. 

Offline Inchlingblue

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Re: Boyfriend tested +
« Reply #32 on: December 10, 2009, 11:27:47 AM »
Carly:

As an aside I want to recommend Shawn Decker's blog. Shawn is a hemophiliac and contracted HIV as a child. He's married to a woman (Gwenn) who is HIV-negative.

They do speaking engagements, etc. in which they educate people on how HIV is spread and are living proof that it's possible to be in a happy and healthy serodiscordant relationship.

LINKS:

http://blogs.poz.com/shawn/

http://www.cnn.com/2009/HEALTH/11/30/hiv.aids.couples.relationships/index.html


Offline Carly

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Re: Boyfriend tested +
« Reply #33 on: December 10, 2009, 11:31:01 AM »
Carly:

As an aside I want to recommend Shawn Decker's blog. Shawn is a hemophiliac and contracted HIV as a child. He's married to a woman (Gwenn) who is HIV-negative.

They do speaking engagements, etc. in which they educate people on how HIV is spread and are living proof that it's possible to be in a happy and healthy serodiscordant relationship.

LINKS:

http://blogs.poz.com/shawn/

http://www.cnn.com/2009/HEALTH/11/30/hiv.aids.couples.relationships/index.html



Thanks for the link to the blog!  I've already got it bookmarked.  We were just reading the CNN article about this couple the other day. 

Offline Sebastian1969

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Re: Boyfriend tested +
« Reply #34 on: December 10, 2009, 05:30:33 PM »
Carly,
I wanted to throw my two cents in again about the Bactrim, I have talked extensively with our doctor about that as well as some other medications, and times have changed, taking Bactrim now is more a preventitive measure than anything else, his doctor is right, there is a chance he may not ever get PCP, but on the other hand, there is a chance he could.  Bactrim can help ward off other infections too during this time period and give your BF's body a chance to "get better" and get his cd count up.

Most imporatantly to me is that you trust your doctor.  This should be a plan that he and his doctor have for him, not just his doctor planing the corse of action.

I hope you and he all the best.  I feel for you and know exactly how helpless you are feeling at times, that comes from loving him.

Offline justin

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Re: Boyfriend tested +
« Reply #35 on: December 14, 2009, 12:24:14 AM »
HI Carly

I dont check in often but just wanted to say I'm sorry to hear about some of the problems you have encountered while trying to adjust. Also wanted to say as others have already that it is very admirable how you are approaching it with such a positive attitude.

My wife is + & I am - but I felt the same as you when I found out. I never entertained the thought of not being with her forever.

I know the beginning is tough but you seem to be approaching it with a positive frame of mind & that is so important. I hope you find a source to help out with the meds. We were very lucky that although we have a skinny plan we never had to pay more than $30 a month for Atripla. Which helped my wife immediately with CDA & VL numbers.

I only skimmed many of the follow up posts but one thing that caught my eye was Bactrim

Please be sure to check that your partner is not allergic to it if they do put him on it.

My wife initially was put on it for a urinary track infection & it almost did her in before they realized she was allergic. She nor I ever thought about it when she was prescribed Bactrim.

Good Luck & I wish you both all the best.
Congrats on the coming marriage too.

Offline Carly

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Re: Boyfriend tested +
« Reply #36 on: December 14, 2009, 08:33:45 PM »
Carly,
I wanted to throw my two cents in again about the Bactrim, I have talked extensively with our doctor about that as well as some other medications, and times have changed, taking Bactrim now is more a preventitive measure than anything else, his doctor is right, there is a chance he may not ever get PCP, but on the other hand, there is a chance he could.  Bactrim can help ward off other infections too during this time period and give your BF's body a chance to "get better" and get his cd count up.

Most imporatantly to me is that you trust your doctor.  This should be a plan that he and his doctor have for him, not just his doctor planing the corse of action.

I hope you and he all the best.  I feel for you and know exactly how helpless you are feeling at times, that comes from loving him.

Thanks for the kind words Sebestian.  You are such a sweetheart.  I'm honestly not sure if we trust this doctor or not.  We're already talking about looking into some other doctors, that are a little further away, but I guess distance isn't really a factor when you're trying to save someone's life.  He seems to be doing pretty good right now, he's feeling better & is getting his appetite back. He still gets dizzy spells though.  I'm not sure what's causing that. 

But, still no Bactrim.  I guess we'll just wait & see.

Offline Carly

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Re: Boyfriend tested +
« Reply #37 on: December 14, 2009, 08:41:02 PM »
HI Carly

I dont check in often but just wanted to say I'm sorry to hear about some of the problems you have encountered while trying to adjust. Also wanted to say as others have already that it is very admirable how you are approaching it with such a positive attitude.

My wife is + & I am - but I felt the same as you when I found out. I never entertained the thought of not being with her forever.

I know the beginning is tough but you seem to be approaching it with a positive frame of mind & that is so important. I hope you find a source to help out with the meds. We were very lucky that although we have a skinny plan we never had to pay more than $30 a month for Atripla. Which helped my wife immediately with CDA & VL numbers.

I only skimmed many of the follow up posts but one thing that caught my eye was Bactrim

Please be sure to check that your partner is not allergic to it if they do put him on it.

My wife initially was put on it for a urinary track infection & it almost did her in before they realized she was allergic. She nor I ever thought about it when she was prescribed Bactrim.

Good Luck & I wish you both all the best.
Congrats on the coming marriage too.

Thanks Justin.  The big issue with the Bactrim right now, (or lack thereof) is that it can be very hard on the stomach, & also aggravate thrush & other fungal infestions.  I realize that this is probably tmi, but until the last week or so, my boyfriend hasn't had a solid bowel movement in at least a couple of years.  And he's afraid that the Bactrim will upset his stomach & I can't blame him there.  The last time I took a sulfa drug I was on the toilet with a trash can sitting in front of me for 2 days.  It was not pretty.  And if he got in that shape it would probably be 10 times worse.  So, I can understand his concerns on that standpoint.  Hopefully he will respond well to Atripla & pcp will be one less thing that we have to worry about for a while

Offline Inchlingblue

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Re: Boyfriend tested +
« Reply #38 on: December 14, 2009, 10:10:09 PM »
  He still gets dizzy spells though.  I'm not sure what's causing that. 


Did it start after he started Atripla? That's a fairly common side effect (because of the Sustiva component).

LINK:

http://www.aidsmeds.com/archive/Atripla_1577.shtml

Offline edfu

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Re: Boyfriend tested +
« Reply #39 on: December 15, 2009, 03:22:52 AM »
times have changed, taking Bactrim now is more a preventitive measure than anything else

I am unaware that the times have changed to such a degree that a PWA with a CD4 of less than 200 does not absolutely require Bactrim or an alternative regimen.  That regimen is more than strongly recommended 100% of the time in such cases by knowledgeable medical doctors; it's not just a recommendation.    Bactrim in such cases has ALWAYS been a preventative measure; that's why it's also called a prophylaxis.  So I also don't understand what it means to state that Bactrim is "more" a preventative measure today "than anything else."  A "wait and see" approach is useless; once you "see," it's too late. 

Pneumocystis is ubiquitous, and only those without a damaged immune system are able to fight it off.  In the early days of the pandemic--before HAART and before Bactrim prophylaxis--80% of PWA's contracted it, and it was often, terribly so, fatal.   Scores of my friends and acquaintances died from it in the 1980s.  Nothing has changed in the interim except that today viral load can be decreased and CD4's can be raised, but the CD4's have to be raised first, to over 200 for several months. 

A desensitization protocol has been developed to prevent adverse reactions to Bactrim.  This involves beginning with a liquid pediatric form and gradually increasing the dosage: 

http://www.aidsetc.org/aidsetc?page=cm-1001_sulfa
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Sebastian1969

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Re: Boyfriend tested +
« Reply #40 on: December 15, 2009, 01:09:18 PM »
Edfu- What I said was "taking Bactrim now is more a preventative measure than anything else" meaning that at this point in Carly's boyfriend's treatment it is for preventative measures since he does not have pneumonia.  When saying times have changed--it was meant as more a statement and probably poorly placed in my response.  I know what I was trying to say and didn't realize it would be interpreted differently-- Sorry for the confusion. 
I am all for taking Bactrim.
Carly--I am not sure where you guys are at, but is there another doctor that you can see for a second opinion?  Even if it's an hour drive, it may be well worth it to get someone who deals more with HIV and specializes in that field.   I really would like to see him going to a doctor you both trust.

Offline Assurbanipal

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Re: Boyfriend tested +
« Reply #41 on: December 15, 2009, 02:45:32 PM »
Carly

I think one of the problems with this approach is the idea that you will both be on the watch for PCP and therefore you are assuming you will be able to catch it before it does much harm.

That may sound plausible, but I know there are members on this forum who got PCP after a poz diagnosis.  So they were on notice (and I believe had stronger immune systems).  But it was still a very serious event with permanent lung damage.  I don't know what the statistics are for that, but just based on the discussions on these forums it cannot be a zero risk proposition. 

Sincerely
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Carly

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Re: Boyfriend tested +
« Reply #42 on: December 15, 2009, 05:22:31 PM »
I understand what you guys are saying & I really think you guys are correct & know what you're talking about.  However, my b/f has already called & talked to his doctor & nurse once more & they have reassured him that they don't feel at risk for pcp.  That doesn't make any fucking sense to me, but whatever.  He's comfortable with what they've told him & he's made up his mind that he's happy with what he's doing now.

And as far as getting a second opinion, his parents, along with he & I (is that correct grammar?) talked about checking out other doctors a few days ago.  Right now, he just wants to get his treatment started & get back into better health.  But somewhere down the line (soon) we plan on trying to find at least one other doc that actually specializes in HIV & isn't just an id doc to give us a second opinion.

I would say that I pray he won't get sick, but at this point I don't really think praying does any good so I'll just hope for the best & expect the worst.

Offline lovinghim

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Re: Boyfriend tested +
« Reply #43 on: December 17, 2009, 12:31:36 PM »
hey everyone im new to this site. my bf is hiv+ and i love he dearly. im glad to see and talk to others like us .im hiv negative ..i look foward to learning everything bout hiv..
loving him always

Offline Carly

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Re: Boyfriend tested +
« Reply #44 on: December 22, 2009, 03:39:27 PM »
Well, good news:  he did get approved for the drug assistance program that's directly through the drug company, but that's only temporary (3 months).  He has an appt. to see our local ASO about getting help through ADAP, & she keeps pushing him to apply for disability.  It's almost like each program is trying to push us off onto another one.  The drug company wants us to use ADAP, & ADAP wants us to use medicare/medicaid.  But the thing is, HE'S NOT DISABLED!!!  He said he may end up having to apply for disability though, so he can get help through ADAP.  I just hope if he does end up having to do that now & then goes to work within the next year that it won't hurt his chances of ever receiving disability if & when he truly needs it.  Hopefully once he graduates in May he'll be able to get a job with decent insurance & we won't have to worry about this crap for a while.  It's just ashamed that people in this country have to beg & plead & be destitute & on death's door step before they can get any kind of help with their medical bills or get any decent medical care.  What kind of government treats its on citizens like this?  Even the damned "healthcare reform" they've been blabbing about is now looking like it's going to benefit the insurance companies, as if they need any more freaking benefits.  They've already got everyone by the balls anyway.  Fuckers.  

On the good side, though, he seems to be tolerating the Atripla pretty well.  But he keeps having pain in his back, namely his kidneys.  And he says it's only in the morning when he's in the shower & the water hits him in that area.  He says it feels better when he adjust the shower head, which is weird, but whatever.  When he had his initial lab work done (right before we found out he was positive) he was told he had protein in his urine.  And nothing was ever done about it.  So after some prodding from me, he finally called his doctor & told her about his issues.  He doesn't like calling her, because he says he feels like he's aggrataving her to death with "every little problem".  The way I see it, she's getting paid to take care of him, & she already told him to call her anytime he needed anything.  I mean, he does have AIDS for christsakes!  It's not like he's a patient with a cold who keeps calling her to complain about his stuffy nose.  But he says he just doesn't want to bother her, at least not until he finally called her today.  Now he's gone to get X-rays & bloodwork done to see if anything is going on.  I have no idea what the X-rays are for, other than just maybe looking for kidney stones.  But he hasn't been passing any blood, which I suppose is a good sign.

I'll just be glad when his body finally starts getting "better" & some of these constant issues will stop dogging us, even if it's only temporary.  I realize that it could be a lot worse, but that still doesn't make my worry any less.  Every day it seems like he has some sort of new skin rash & every morning I have to watch him sit on the bed after he gets out of the shower & wince in pain until his kidneys stop throbbing.  It really sucks, but I love the man & this is the kind of thing you sign up for when you commit yourself to another person, so I just deal with each thing as it comes.

Hopefully we'll figure out what's going on with his kidney's pretty soon, & then in February he gets more bloodwork done to check his VL & CD4 levels.  Then we'll get to see if the Atripla really is working.  

So, that's it for now.  Just needed to vent.  Thanks.

« Last Edit: December 22, 2009, 03:41:28 PM by Carly »

 


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