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Author Topic: 4 weeks off PEP have questions need some support  (Read 15444 times)

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Offline RedDirtGirl

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4 weeks off PEP have questions need some support
« on: February 26, 2008, 07:48:55 PM »
Hi everyone,

I have met the man of my dreams and am getting married in June.

He has been positive for 25 years.

He recently switched  meds and his CD4's were at 90, his viral load undetectable. jst last week he had bloodwork done. I've been really nervous waiting on the results that finally came in today.

His viral load is still undetectable and his CD4's are now at 108. doc said he was disappointed they hadn't climbed higher but the way I see it at least they didn't drop 20 points, right?

So, I'm wondering, is it encouraging that his CD4's climbed almost 20 points or do they fluctuate like that in general on a daily basis?

Also, he's not on any type of antibiotics or other meds, just the Sustiva. Shouldn't he be on some meds to ward off opportunistic infections? His doc is a small town doc and I'm starting to think he needs to maybe get in with someone a little more up on things perhaps. Then again, all this HIV information is very new to me so I could be completely wrong.

Also, his viral load remaining undetectable - does this mean the virus is NOT replicating and not causing damage?

When I went to the doctor with him he told me that his viral load being undetectable makes it extremely unlikely that he will pass the virus to me ... as long as we use condoms of course. But then I read somewhere online that viral load can change over the course of the day and can be higher in semen than in blood thus making an "undetectable" viral load insignificant to the ammount of risk involved to me.

Thanks in advance for any help or information.

Offline structuredjen

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Re: New here - I'm negative and my boyfriend is positive - some questions
« Reply #1 on: February 26, 2008, 07:58:52 PM »
Hi RDG-

I'll let some of the experts chime in on the technical stuff - I just wanted to say hello! and welcome to the forums! :)

Jen

oh and congrats on the wedding!
« Last Edit: February 26, 2008, 08:03:30 PM by structuredjen »

Offline Assurbanipal

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Re: New here - I'm negative and my boyfriend is positive - some questions
« Reply #2 on: February 26, 2008, 09:29:55 PM »
Hello RedDirtGal

Welcome to our little band.  June bride . . . it must be tough balancing all this HIV stuff with everything else you are trying to do just now. 

You might want to read through the lessons on this site.

http://www.aidsmeds.com/articles/Introduction_4702.shtml

To answer your specific questions, some of the things you describe about your boyfriends medications do sound unusual:
1) It's pretty common for people with under 200 CD4 to be on Bactrim or another prophylactic against pneumonia
2) Usually people take Sustiva with something else (e.g. Truvada, or as part of the combination pill Atripla), not just by itself.

There's been a lot of discussion about transmission risks by undetectable folks recently -- for instance in this thread. 

http://forums.poz.com/index.php?topic=18704.0

But generally the message is that condoms work great if used right, and you might have other options once you get comfortable with the science.

Best wishes to you and the groom.

Assurbanipal
 
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 Teresa

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Re: New here - I'm negative and my boyfriend is positive - some questions
« Reply #3 on: February 27, 2008, 06:26:04 PM »
Hello RedDirtGal,

I'm married to a poz guy and I'm negative. I agree with what Assurbabipal told ya. He really should be on some kind of prophylactic . Hubby was on Dapsome until he had 3 set of labs that were over 200.

If I were you guys I would look for an I.D. Dr or one that knows quite a bit about HIV.

As for using condoms, we use them every time. I wouldn't have sex without one!
I do hope you read the lessons here and have him read them too. They really helped us.

Welcome to the forums!

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline Andy Velez

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Re: New here - I'm negative and my boyfriend is positive - some questions
« Reply #4 on: February 28, 2008, 09:44:40 AM »
Dear RDG,

Welcome! We're glad you have found your way to our site.

I agree with what has been said about your guy's treatment regimen. You mention that he's recently had a change of meds. There must have been some thought in why that decision was taken. I'm  I'm wondering if it would be possible for you to meet his doctor and have an opportunity to ask some questions. Would your boyfriend be ok with that? 

Meantime the consistent use of condoms during intercourse is essential to protect your sero-negative status. No exceptions.

You're welcome to discuss anything here and to ask questions. Keep us posted on how things are going. There are many thousands of sero-discordant couples having great lives together so you have lots of company in dealing with the relevant HIV issues.

Cheers,

Andy Velez

Offline RedDirtGirl

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Serodiscordant relationships question
« Reply #5 on: June 14, 2008, 12:31:57 AM »
As many of you probably know I am an HIV negative woman in love with a positive man. We recently had a condom mishap, the condom came off during sex and we didnt notice until after. Ive been through 4 weeks of PEP which was EXTREMELY difficult on me physically and the emotional toll on both he and I was also horrible.

I have been trying to educate myself on serodiscordant couples since we started dating and I realized that he was the man for me. We have been together just over 6 months now and even though weve had our ups and downs I still feel very confident in what we have together. To put it short... I want to stay with this man.

But now, since stopping the PEP meds I find that I am afraid during sex. I cant relax due to fear that the condom will come off or break and we wont know until its too late. Even though he technically has AIDS *CD4s hovering around 130* for years and hes been infected for over 20 years, he feels well, works at a physical job every day and honestly you wouldnt know from looking at him that he is ill. His viral load is undetectable and has been for about 3 years now. So I know that even if we have another condom mishap my risk is somewhat low. But then I start thinking about the fact that we are so incredibly attracted to each other and our sex life is great ... basically, we are having lots of sex ... so it seems only a matter of time before this happens again, right? Condoms do break, and as Ive now found out they can also slip off without either person realizing. This is agonizing for me as I really feel I simply cannot go through PEP again. I was horribly sick all month, couldnt work, could barely function.

Since being off the PEP meds for a couple of days Ive asked him to pull out just before ejaculating. This seems the only way to ease my fear. Hes okay with this but it feels as though we are going backwards in the intimacy aspect of our lives. This is how we started out when we first became intimate until I got more comfortable being with him. Honestly, when he first told me he was positive I was VERY worried about even the smallest things such as any small cuts on his hands or being close with him if he was sweaty.... I hate to even admit that but I was very uneducated about the whole situation. But after reading ALOT, going with him to his doctor appointments and being close with him and getting used to everything I can say I was feeling very comfortable on every level.

So, can someone who has been in this situation please tell me, how does the negative person in a serodiscordant couple stay negative when the fact is that condoms do fail? Ive read on this and other sites that there are many serodiscordant couples who achieve this for many years. I know there are no guarantees and I suppose it all comes down to what risks am I willing to take? I imagine that no one can tell me anything I dont already know but I would love to hear from people in similar situations.

Offline Ann

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Re: Serodiscordant relationships question
« Reply #6 on: June 14, 2008, 05:54:40 AM »
Hi Red,

In all honesty, correctly used condoms RARELY break. Read through the condom and lube links in my signature line. The first one (it shows as "condoms are a girls best friend") has discussions on the correct FITTING of condoms as well. If the condoms you and your boyfriend use are prone to slipping, they're not the right size.

You might also want to look into and try the female condom. You don't have to worry about these slipping off and they don't seem to be prone to breakage. I've used them in the past and they are very good.

Ann
« Last Edit: June 14, 2008, 05:57:05 AM by 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 RedDirtGirl

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Re: Serodiscordant relationships question
« Reply #7 on: June 14, 2008, 08:39:42 AM »
Hi Red,

In all honesty, correctly used condoms RARELY break. Read through the condom and lube links in my signature line. The first one (it shows as "condoms are a girls best friend") has discussions on the correct FITTING of condoms as well. If the condoms you and your boyfriend use are prone to slipping, they're not the right size.

You might also want to look into and try the female condom. You don't have to worry about these slipping off and they don't seem to be prone to breakage. I've used them in the past and they are very good.

Ann


Thank you Ann. I have read through your links. In fact, that was one of the first things I did upon finding this site months ago. Thanks so  much for posting that in your signature, its very informative.

Its not that the  condoms we use are prone to slipping. I think what happened was that he didnt stay completely hard that one time and it must have come off at that point. I dont have a lot of experience with condoms and I just assumed a guy would FEEL it if it had come off. All guys Ive ever talked to about condoms say it feels completely different with one on so I have to wonder how he didnt notice. Then again, I didnt either so....

I admit Im having a bit of a trust issue with him. I know accidents happen but I feel kind of like this could hae been avoided.  But its horrible for either of us to feel like we have to to stop every few minutes during sex and check the condom. Ugh!

And we did try the female condom. We both really like it. He says it feels like theres no condom between us at all with the FC. But it has a higher rate of failure than the male condom in tests of how well it works against pregnancy. I think it was as high as 21%? Of course thats if its not used correctly EVERY time.

I  just cant seem to relax enough to enjoy the sex anymore. Like I said in my first post I imagine no one can really tell me anything I dont already know. He and i will just have to work our way through this one somehow.
« Last Edit: June 14, 2008, 08:41:45 AM by RedDirtGirl »

Offline Ann

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Re: Serodiscordant relationships question
« Reply #8 on: June 14, 2008, 10:13:13 AM »
Red,

You have to stop and consider one huge difference between sperm and the hiv virus. Sperm swim.

If you were engaging in frottage (the act of rubbing genitals together) and he came, you wouldn't be at risk for hiv because this occurs outside the body, in an area which the cells hiv needs to infect generally aren't found.

However, you could become pregnant if he came during frottage. Those little buggers sure can swim! It doesn't happen terribly often, but it is known to happen. I have to wonder if those women who became pregnant were removing it properly - you're supposed to give it a little twist to seal it off before you pull it out. It can be a little messy if you don't.

It sounds like you have a good relationship and I suspect all you really need is a little time and a few negative results under your belt. I know my (ex)partner and I relaxed more and more with each passing negative result. Negative results give you the confidence that you're doing what you need to in order to stay negative - and most importantly - you know what you're doing is working.

I found that condom-checking soon became second-nature. You don't necessarily have to stop and check, just slide your hand down and have a little feel now and then. The condom should also be checked any time either of you notice he's not completely hard.

You might also want to explore other ways of satisfying each other sexually - it doesn't have to be all about penetration. Be patient and don't rush it. Sit down together and talk about your feelings.



Good luck!

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 Prestige

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Re: Serodiscordant relationships question
« Reply #9 on: June 15, 2008, 06:34:24 AM »
I'm positive and my wife negative, trying to stay that way we use ALWAYS condom, I would advice your partner to check during sex if the condom is still in place, and with correct wearing does not break, of course checking every while does not make sex better, but who said that sex is better after HIV...

Offline justin

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Re: Serodiscordant relationships question
« Reply #10 on: June 19, 2008, 03:33:41 AM »

So, can someone who has been in this situation please tell me, how does the negative person in a serodiscordant couple stay negative when the fact is that condoms do fail? Ive read on this and other sites that there are many serodiscordant couples who achieve this for many years. I know there are no guarantees and I suppose it all comes down to what risks am I willing to take? I imagine that no one can tell me anything I dont already know but I would love to hear from people in similar situations.

Hi

Just saw your post. I am like you but I am the Husband & negative. My wife is positive but doing very well on Atripla.
I do not have any answer for you but just wanted to say keep a good thought.
Like you I worry but not much really. Maybe too little. For better or worse I just feel I love my wife & what ever will be will be. I do not mean for that to sound flip at all because in the past I have had many moments where I woke at night & just wondered. But in the end like you say ... it all comes down to what risks am I willing to take
I just feel so lucky for every moment I share with her & when I said for better or worse in sickness & in health till death do we part I never meant anything more in my life.

Good luck to you & your husband I wish the very best for you!

Offline megasept

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  • Steven here...
Re: Serodiscordant relationships question
« Reply #11 on: June 19, 2008, 04:29:52 PM »
I just assumed a guy would FEEL it if it had come off. All guys Ive ever talked to about condoms say it feels completely different with one on so I have to wonder how he didnt notice.

Hey RedDirtGirl. One reason guys enjoy erections is we feel everything when we are hard. Softer cocks feel less, especially pleasure. So your partner's not knowing the rubber fell off is not really all that strange.

Admittedly, this report comes from a gay guy, but, my last lover of years managed to stay negative, with me, so file that under "nice statistics" even if it's male/male. I bet your man appreciates your confidence and commitment just as I did my "negative" man.
 
8)  -megasept


Offline RedDirtGirl

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4 weeks off PEP have questions need some support
« Reply #12 on: July 06, 2008, 01:59:39 PM »
Hi All,

I'm not sure where my posts belong. I posted 2 months ago in the Loved One with HIV forum as my man is HIV positive and we had a condom mishap. But now I'm thinking my questions belong here as my real concern is about whether I am infected.

I tested negative by Oraquick 2 days after finishing PEP. I felt horrible on PEP and still, one month later feel horrible. Mainly, I'm exhausted all the time and unable to carry on my daily activities due to this. I have always had autoimmune problems (I've been on disability for 15 years) though never a specific diagnosis. So I'm wondering if the severity of the PEP meds just really knocked me for a loop?

For the past week I have also experienced severe nausea and diarrhea. I have to get up about 4 / 5 times a night to rush to the bathrom and have no appetite. I'm trying to tell myself I'm not seroconverting and I dont have other symptoms, no lymph node enlargement, no fever, sore throat ect... Just what feels like a severe stomach flu.

Anyway, I know theres no way to know for sure until I test at the 3 month mark but that just seems sooooo far away.

My questions...

1. Why did I test at 4 weeks after exposure if its not conclusive until 3 months? How encouraging is that 4 week negative?

2. Is there any real info available as to whether PEP delays seroconversion?

3. I'm concerned that since I'm already unwell I willl be one of those people I have read about who seroconvert and go straight on to having AIDS. Can anyone elaborate or explain this to me? I know from past testing (due to my autoimmune issues) that my CD4s are in the low 500s which I believe is the low side of normal. Basically, I'm hoping someone can reassure me that even if I do test positive I can expect to be okay for some time.

I hate to be such a worried well especially since I made the choice to be in this relationship with a positive man. I have no one else to turn to for support. I've contacted my HIV clinic that prescribed the meds hoping I could find a counselor or program fo negative people in a serodiscordant relationship but to no avail.

Any help would be apreciated.

BTW ... I'm female and the exposure was vaginal and my mans viral load is undetectable and has been for years though his CD4's are around 100. He's been positive for 25 years.

Offline Andy Velez

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Re: 4 weeks off PEP have questions need some support
« Reply #13 on: July 06, 2008, 02:51:33 PM »
Feeling horrible during and even after PEP is not unusual. They are very potent drugs and often have tough side effects.
Nothing you are experiencing in terms of symptoms should be misinterpreted as being HIV-related.

When it's begun from 24-72 hours after a possible exposure PEP has proven to be very effective. The fact that your partner's VL is undetectable is also a very important point in your favor against transmission having occured. You can test at 4 weeks after the completion of PEP to get an initial result. Assuming you test negative it is a good sign that you will continue to test negative, but you do have to do a final test at 13 weeks after the completion of PEP.

If your symptoms persist you should discuss them with your doctor.

Good luck with your test results. 
Andy Velez

Offline RedDirtGirl

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Re: 4 weeks off PEP have questions need some support
« Reply #14 on: July 16, 2008, 12:22:00 PM »
Thank you Andy.

I guess the only thing to do is to wait until September for my 3 month test.

I'm realizing that I have way too much anxiety to continue in this relaitonship. I feel horrible about that as on every other level my man and I are perfect together. Yes, we've had our ups and downs but we've found our way through them. I hate to break his heart as he is so happy to have found someone to accept him and his illness. But I cannot live with this anxiety. The fact that I am already unwell and suffering autoimmune issues bad enough to need to be on disability just makes me think I must be crazy to risk such a serious illness! Mainly I have guilt because I have children, they need me to be as strong as poossible, mentally and physically.

I have another question for anyone that may know. I have read that there are different strains of HIV. My man and the woman he contracted HIV from have both been infected for close to 25 years. They are both relatively well and able to work full time. I'm wondering, are they just lucky? ... or perhaps they were both really healthy to start out with? ... or are some strains of HIV less aggressive than others?


Offline RedDirtGirl

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Re: 4 weeks off PEP have questions need some support
« Reply #15 on: July 18, 2008, 11:13:22 PM »
I have to say, seeing that this thread has been read over 3300 times and yet no one cares to respond to me is a bit unsettling. :(

Anyway, since I'm feeling VERY unwell and not up to doing much besides read and go online, I'm finding it difficult to put my fears to rest. If I was feeling fine and actually able to enjoy my summer I'm sure I wouldn't be so anxious hile waiting for my 3 month test. I know the advice is to get out and stop thinking about HIV but that's tough in my current situation. I won't go into details but suffice it to say I feel like crud nearly 100 percent of the time. I know symptoms are no way to diagnose but it's scary that prior to the condom failure I was feeling much better.

After reading about delayed seroconversion, I realize that since I have autoimmune issues I may have to test out even further. I don't have an actual diagnosis but my primary care physician has set me up with a rheumatologist and feels that's where I willl get answers to my strange symptoms through the years.

My question... years ago I was on IVIG. At the time I was diagnosed with CFIDS, but I think that is questionable as that's basicallly a diagnosis of exclusion.. Having never been diagnosed as having an actual autoimmune disease can anyone tell me what exactly IVIG does? I believe it boosts your IGG? Is IGG whats necessary to produce antibodies? Or is it IGM?

I do have high antibody levels to other viruses (EBV, HSV 1 and 2... though Ive never had any outbreaks until the past 2 months  and you can be sure that's scaring me) so I know my body does produce them.

ARGH ... I'm rambling. It's Friday night and I'm stuck home feeling miserable and afraid. I reallly do suck at life it seems.

I realize that I should discuss this with my doc but honestly I hate to tell him I've put mysef in this situation. He's known me for 25 years and knows the struggles I've been through with my health.
« Last Edit: July 18, 2008, 11:16:01 PM by RedDirtGirl »

Offline RapidRod

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Re: 4 weeks off PEP have questions need some support
« Reply #16 on: July 19, 2008, 05:53:43 AM »
You won't have to test out any longer than the 3 months after your last dose of pep.

Offline Ann

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Re: 4 weeks off PEP have questions need some support
« Reply #17 on: July 19, 2008, 08:20:10 AM »
RDG,

I've never heard of autoimmune problems causing delayed seroconversion. However, sometimes autoimmune conditions can cause FALSE positives. You haven't had one of those.

I fully expect you to continue to test negative.

If you keep your doctor in the dark concerning any of your recent medical history, you're making it impossible for him to do his job properly. Forget the shame or whatever and talk honestly to the man. He's there to help, not judge.

I'm not familiar with IVIG. That's something you need to discuss with the doctor who prescribed it for you.

Hang in there. Like I said, I fully expect you to continue to test negative.

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 RedDirtGirl

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Re: 4 weeks off PEP have questions need some support
« Reply #18 on: August 20, 2008, 07:02:45 PM »
Hi All,

I  went to my regular doc today for unassociated issues. I asked him for an HIV test and he promptly agreed, no questions asked. I ended up telling him the situation anyway and I'm glad I did. He was supportive and reassuring. The test takes about 5 days he said and they call me in if it's positive. I have a follow up appt next week for other bloodwork too. So heres hoping the phone doesn't ring from their office over the next week. I may just call them and tell them not to call me either way, I can just get the reults when I go in. Wish I'd thought of that at the time.

I know I have to take another test at 3 months post PEP. But I figure I'm at 15 weeks from exposure so if it's still negative then things are looking good.

Offline Ann

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Re: 4 weeks off PEP have questions need some support
« Reply #19 on: August 21, 2008, 04:52:51 AM »
Hi RDG, thanks for the update.

But I figure I'm at 15 weeks from exposure so if it's still negative then things are looking good.

Absolutely correct. I really don't expect your earlier negative result to change.

Let us know how it turns out.

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 RedDirtGirl

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Re: 4 weeks off PEP have questions need some support
« Reply #20 on: August 21, 2008, 11:24:03 PM »
Hi again,

It's been a busy day. Last night I started to have a horrible pain in my lower jaw, right ear, neck area each time I swallowed.  I thught perhaps an er infection or tooth problem as the cause. It was really intense and kept me up all night even after taking Tylenol. This morning it was better though not oompletely gone.  I was thinking I would give it another day before I had it checked out as I have a lot on my plate these days. But by 4pm it was excruciating again.

So I called my doc and was told to come in. He checked me out and said he believes it's a swollen lymph node in my neck. This is not the same doc as I saw yesterday. I actually don't much care for this doctor but he is part of the group. I had already decided not to mention anything HIV related to him. Of course, hearing him diagnose the pain as being caused by a swollen lymph node did NOT help my worries. Anyway, he went to check my chart from yesterday and saw the notes regarding my HIV concern and immediately went into "Oh this is not good. Not good at all!"  Sheesh! Talk about poor bedside manner.  :-\

He then got on the phone and called the lab and asked if any of my bloodwork results were in. He asked for a verbal on the HIV test and was told it's negative!  :) I was very surprised that the test was done in 24 hours as the nurse told me it takes about a week. Anyway, long story short, the test was negative.

Looking at my calendar this test was done 104 days or basically 15 weeks from the incident and 71 days or 10 weeks from my last dose of PEP.  I'm scheduled to have an Oraquick test on Sept 12 at the HIV clinic. I will still keep that appointment but I'm confident I would have seroconverted by now if I was going to.

I disagree with the doc that the pain in my jaw is from a lymph node. He did say he felt a slightly swollen node where the pain is but also felt the same on the other side. I can't feel anything swollen. He then cautioned me that I should be tested monthly especially since I'm showing symptoms. Ugh ... before he read my chart he said "Lymph nodes swell ... it happens." ::)



Offline YaKaMein

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Re: 4 weeks off PEP have questions need some support
« Reply #21 on: August 22, 2008, 01:19:14 AM »
Another reminder that all physicians are not equal. Hope you can see YOUR doctor soon. Good news is that you don't have spend the weekend worrying about your test results. Great news is it's negative!!

Bad news is the pain in the neck doctor who saw you along with the pain in the neck. Hope you get some relief with those and have a great weekend.
09/11 Endocrine Consult
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Offline Ann

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Re: 4 weeks off PEP have questions need some support
« Reply #22 on: August 22, 2008, 08:12:49 AM »
Hi RDG,

This doctor sounds like an ignoramous who needs some hiv awareness training pronto.

I still do NOT expect your test result to change.

And if I were you, I think I'd take that jaw problem to a dentist. Do you still have your wisdom teeth? I had a problem that sounds much like yours when my wisdom teeth started acting up and needed removal. (Well, it was just one of them acting up, on the bottom right, but they ended up taking them all out.)

Hang in there.

Ann
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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 RedDirtGirl

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Re: 4 weeks off PEP have questions need some support
« Reply #23 on: October 21, 2008, 09:39:46 PM »
Hi all. I just need to have somewhere to talk. Things haven't been going well lately. My boyfriend is very unwell and has been hospitalized for the past week. The hospital he is at is about 150 miles from my home and Im pretty unwell myself. So, I haven't been able to get to see him as often as I would like to.

As I posted previously I had a negative test at 15 weeks post exposure and 10 weeks post PEP. Im not feeling well at all. My lymph nodes under my arms are swollen and painful, Im exhausted from the moment I wake up, Im nauseous and can't eat and have horrible joint pains, chills and night sweats. In general I feel miserable. I do have a history of autoimmune issues.

I know I have to retest and that my last test wouldnt be considered conclusive. After seeing how ill my boyfriend is and realizing I could lose him Im so afraid right now. I worry so much about both of us being sick. I am trying to find the courage to get tested again but so far, I can't bring myself to get it done.

My question - I had been starting to feel unwell before being tested the last time. I had some swollen lymph nodes under my arm and nausea and fatigue though not as bad as I am now. Im wondering what exactly it means when your lymph nodes swell? I know they are fighting infection but would it stand to reason that if I was tested several weeks afer noticing painful swelling of my nodes wouldn't I have tested positive if I as infected?

I dont know why I find this so hard to put into words.... :-\ I guess what I'm trying to find out is: wouldnt I have been producing antibodies if I already had lymph node swelling at the time of my test?

I really need some help and encouragement and I guess just confirmation that whats going on with me physically could be unrelated to HIV. I hate to come here and complain but I really don't know where else to turn.

Offline Ann

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Re: 4 weeks off PEP have questions need some support
« Reply #24 on: October 22, 2008, 06:49:06 AM »
Red,

Yes, you should get your confimatory test done - BUT - it's unlikely to be any different to your ten week test result. NEGATIVE.  And yes, if your lymph glands had anything to do with hiv, you would have tested positive at your ten week post-PEP test. You didn't and you're not likely to either.

There are hundreds, if not thousands, of reasons why lymph glands will swell. You really need to see a doctor to find out what is going on with yours. Whatever is going on has nothing to do with hiv.

I'm sorry to hear that your boyfriend has been unwell. Hope he gets better soon.

And PLEASE, see a doctor! You might have something serious - other than hiv - going on in your body and ignoring it isn't going to help.

Take care of yourself and get some medical attention pronto.

Ann
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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 RedDirtGirl

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Re: 4 weeks off PEP have questions need some support
« Reply #25 on: November 04, 2008, 09:36:16 AM »
Ok, I went for an HIV Elisa blood test yesterday morning at the clinic that gave me PEP. The Dr told me she's supposed to have me come back in 3 days but she's going to save me the trip and call me with the results. She said she would know by last night. It's now next morning and I still haven't heard. All I can think is the Elisa was positive and they're confirming.

So she wanted to save me a trip and instead she's driving me nuts with worry about why she hasn't called yet. :(

I know I shouldn't be trying to figure out why she hasn't called yet but I can't seem to let it go. Anxiety is the worst! I'm shaking like crazy!

Offline RedDirtGirl

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Re: 4 weeks off PEP have questions need some support
« Reply #26 on: November 04, 2008, 09:43:53 AM »
She just called when I clicked POST. The test was negative! Phew! This test was done 5 and 1/2 months from xposure so it's completely conclusive.

Ok I can put that behind me.  :)

Thanks everyone!

 


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