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Author Topic: Probably paranoid and delusional but still looking for some feedback and answers  (Read 2699 times)

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Offline beck

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I'm on PEP for a possible exposure to HIV. I'm having trouble remembering to take the HIV medication because due to side effects I cannot take them at the same time as the immunosupressants I have to take (for another disease, not HIV). I was remembering pretty well for the first week but then on the second week I took one dose really late... then I missed one does and took the next one late. That was three days ago... yesterday I had a fever and was feeling a bit under the weather and now I'm sick... fever, sore throat, headache, etc.

I have a few questions:
1.) Is the Combivir still effective at lowering my risk of getting HIV. Also, if it's not should I continue to take it or is it safe to come off it? (I ask because it makes me sick to my stomach.)
2.) Does anyone know if the immunosupressants increase or decrease my risk for HIV? I ask because I have two friends who are both nurses and who seem credible (one is hiv-positive, the other works in hiv prevention) but they are telling me two completely different things. I don't know whether to say on them or come off. My doctor won't comment and refuses to make any recommendations and instead keeps telling me "it's a personal choice".
3.) How long would it take before an RNA test could detect HIV? (This is what they use for high risk cases at the clinic where I live.)

Sorry to bother you all with my worrying. Thanks in advance for your help! =)

Offline Andy Velez

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Re: PEP and some other questions
« Reply #1 on: June 18, 2008, 06:05:44 PM »
Beck, you want to be as compliant as possible in order to get the maximium benefit from the drugs you're taking. If you have questions about going off or modulating them, that's something to discuss with your doctor. It's not something to shop for opinions or to guess about.

An HIV test should be taken at 13 weeks AFTER the completion of the 28 day PEP regimen. An RNA test is not designed for diagnostic purposes and sometimes yields a false positive. You can do that 28 days after completing PEP, but even if you test negative you should still do an ELISA at 13 weeks.

What was your risk to begin with which prompted you to get started on PEP?

 
Andy Velez

Offline beck

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Re: PEP and some other questions
« Reply #2 on: June 18, 2008, 06:54:58 PM »
Thanks for your answer.
Yeah, I kind of realized right after I posted that I should talk to my doctor about anything regarding medication.
I had also been told by a friend that the RNA test aren't good for this type of thing but that's what they use at the clinic. They require me to go in four times at certain intervals after the possible exposure to test (I believe using an RNA test). I'm not going to argue with the DPH (as they're footing the bill for the PEP) but I'll be sure to keep what you told me in mind.

As for what happened... The condom came off when I was having sex. He came in me and to make matters worse I had been bleeding from a procedure done a few weeks prior.

Offline Matty the Damned

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Re: PEP and some other questions
« Reply #3 on: June 18, 2008, 07:07:25 PM »
Beck,


PCR testing in situations such as these is always fraught with complications and I'm really at a loss to understand why it's used for these purposes at all. Nevertheless, if PCR testing is to be used in such a situation, then PCR-RNA is the right one.

I presume the guy you bare-backed with was known to be HIV positive?

MtD

/edited to correct an error/
« Last Edit: June 19, 2008, 04:59:03 AM by matty.the.damned »

Offline beck

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Re: PEP and some other questions
« Reply #4 on: June 18, 2008, 08:29:15 PM »
Okay, thanks MtD.  I will talk to my doctor about using a different test next time I have to go in to get tested. (I'm not sure I have much of a choice though. I think that's their procedure and in my experience DPH has not been very flexible... but at least now I know not to immediately assume I have HIV if it comes back positive.)

Yeah, my sex partner is HIV+.

Offline Matty the Damned

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Re: PEP and some other questions
« Reply #5 on: June 18, 2008, 08:39:42 PM »
Beck,

That sounds like a plan. Whatever result comes back from the PCR test (be it DNA or RNA) you're still going to have be antibody tested 13 weeks from the end of the PEP regimen.

I know people think that early-bird testing with PCR assays can give peace of mind, but in my experience it's the opposite. It tends to create more anxiety and stress as the ultimate result needs to be confirmed by traditional antibody testing in any event.

As for the medications you're on; well Combivir contains AZT (zidovudine) which is notorious for causing nausea so I'm pretty sure that's why you feel so ill. Are you only taking Combivir or have they got another ARV in there as well? Whichever combo you're taking it's important that you take exactly as prescribed. If you start to feel seriously ill, see your doctor.

MtD

NOTE TO WORRIED WELLS WHO MIGHT BE READING THIS!

The advice that's being given to Beck is specific to his circumstances and does not apply to you lot. I don't wanna see issues from this thread being quoted in other AMI threads. I don't wanna see you lot posting questions in this thread. I don't wanna receive snooping PMs from people asking me about Beck or his issues.


Offline beck

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Re: PEP and some other questions
« Reply #6 on: June 19, 2008, 01:52:03 AM »
The doctor in the ER started me off on Combivir and Kaletra (which she pretty much hijacked from the hospital's rape trauma center) but I only stayed on Combivir. Kaletra made me ill and I ran out of it after a week; I couldn't afford it and according to the DPH it's experimental for PEP so they wouldn't pay for it. My regular doctor wasn't pleased with this but the staff at the clinic said it was better for me to be off it anyway. (It's very confusing and kind of frustrating because they all keep referring me around in circles and everyone seems to have different opinions on what's best.)

Offline Matty the Damned

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Re: PEP and some other questions
« Reply #7 on: June 19, 2008, 01:59:08 AM »
Combivir on it's own is often used for PEP. It contains two drugs, the AZT I already mentioned and another drug called 3TC. Adding Kaletra is not uncommon in PEP regimens because it's a very powerful inhibitor of HIV, but not always necessary or desireable. Kaletra is rough stuff as you discovered.

There is debate about what combinations are best for PEP and probably Combivir is the best you're going to do under the circumstances.

Be well,

MtD

Offline beck

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Re: PEP and some other questions
« Reply #8 on: June 19, 2008, 02:25:22 AM »
Thanks MtD for the clear explainations... it's really helpful since I've felt a little lost through out this whole process.
Well, back to watching movies and eating popsicles. =)

Thanks again,
Beck

Offline Matty the Damned

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Re: PEP and some other questions
« Reply #9 on: June 19, 2008, 04:57:48 AM »
Actually Beck,

I've made a small but serious mistake here and for that I apologise. In fact it is the PCR-DNA test which is more prone to false positives, not the PCR-RNA.

So don't ask for a PCR-DNA test. If you have to have a PCR test, then the one the DPH is recommending is the preferred one in these situations. I've corrected my advice to you in my earlier post.

Once again I apologise for the mistake and any confusion it may have caused you.

Best regards,

MtD

Offline beck

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Re: PEP and some other questions
« Reply #10 on: June 19, 2008, 08:20:26 PM »
Okay, got it. Thanks!

Offline beck

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[I'm not really sure what section this should go in so apologies in advance if it's in the wrong place.]

My partner is HIV-positive. I've known him for several years now. Up until recently we had a good relationship first as friends and then later on as lovers.

We had sex a few times without a condom (the first few times were because I has tested positive (falsely) and hadn't received the proper followup... the other few times I guess I'd like to attribute to an adjustment issues and denial on his part that he can infect me (he's undetectable).... and low self esteem, approval seeking, and and some ill informed advice from an MD on my part). Either way, a good friend and mentor of mine (a long time hiv+ guy) sat me down and gave me some tough love and said, "I have no respect for your boy and what he's doing and I don't know if you're insane or asking for it but you have a second chance and those are fucking rare. You're already disabled... do you have a fucking death wish". My friend got though to me and I started insisting on using condoms again in the very beginning of December. I told my regular doc what had happened and I got what for all purposes my doc and I considered to be a conclusive negative result.

My partner said whether or not we use condoms is up to me... however, he almost invariably will ask me if he can fuck me bareback and just not come in me. (Answer is "no.) He'll ask a second time usually (which kinds of makes me a little angry).

Anyhow, the thing that really concerns me is that every time except once when we used a condom it broke or slid off. I've only once had a condom break prior to this and I do know how to use them correctly and I check the expiration dates and don't store them in warm/sunny places. The one time it didn't break I was checking it every minute almost.

I know he cares about me and so I know this sounds really crazy and paranoid and whatnot but I'm starting to feel like maybe there's some foul play here on his part. I mean, how much back luck with condoms can one possibly have?

On the other hand I'm afraid to talk to him about this because if I'm wrong and he's as stressed out about this as me (which it doesn't seem but he does know how to keep his cool a little better) I'll feel like an ass it it could really tear us apart.

I guess I could just be freaking out right now because despite me going off immuno-suppressants in mid Jan (due to a low WBC) and since then my white cell count has dropped uncontrollably to near nothing. (It is expected to be above normal for someone with my medical history, not below.) My regular doc can't find anything odd except I had a low grade fever for a while. She's recommending that I get tested for HIV but she wants me to wait the entire six months due to the meds I was on and my illness. I'm honestly really scared.... Either way, I'm kind of in trouble... I either have HIV or some serious unidentifiable problem with my immune system... either possibility is not reassuring.... So I am under some stress and maybe that's where these awful thoughts are coming from.... but... I don't know.

I have a few questions:
1.) Is it really necessary to wait that long to get an accurate result... should I get a second opinion?
2.) What do I do about the situation with my boy? Am I just paranoid? Should I confront him? If so, how? If not, what should I do to get over this bad feeling I have about this? I trust his completely normally but he's kind of said a few things which were just really weird and kind of sent up red flags for me. I kind of hope I'm just making this up... who would do such a thing anyhow, right?

I'm sorry this is so long... I probably sound like a rambling lunatic but I need some support and guidance... so thanks in advance for taking the time to read this.

Offline Ann

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Beck,

I've merged your new thread into your original thread - where you should post all your additional thoughts or questions. It helps us to help you when you keep all your additional thoughts or questions in one thread. This forum is run very differently to the rest of the place.

If you need help finding your thread when you come here, click on the "Show own posts" link under your name in the left-hand column of any forum page.

Please also read through the Welcome Thread so you can familiarize yourself with our Forum Posting Guidelines. Thank you for your cooperation.



Wow, it does sound like "foul play" is going on here. Condoms just don't break all that often or that easily. (Am I correct in surmising that you mostly bottom in your relationship?) As for your question of "should I confront him", yes, it certainly sounds like you two need a very serious heart-to-heart discussion. The first possibility that springs to my mind is that he is afraid of losing you and thinks that if you're positive too, you'd be less likely to leave. You and I both know that if you love him you'll stay regardless, but maybe HE doesn't know this in his heart. He needs to know that if he infects you deliberately, that would be the more likely deal-breaker.

It is true that you're much less likely to become infected when your partner has an undetectable viral load - but that doesn't mean it's entirely without risk. There have been studies to this effect, but unfortunately these studies concentrated on het couples only, for the purpose of conception. Being the receptive partner in anal is always going to be more risky than being the receptive partner for vaginal, mainly because the anal tissue is much more fragile than vaginal tissue, and more prone to damage. Until someone does transmission studies looking at an undetectable VL in anal, we can't be sure if we'll get the same results as in the het studies. BTW - the VL test look at the VL in blood, but not semen. It is possible to be undetectable blood-wise, but not semen-wise.

About testing - what immunosuppressants have you been taking? The two types that are known to possibly delay seroconversion are chemotherapy drugs for cancer and anti-rejection drugs following organ transplant, but it doesn't sound to me like you're on either of those.

As you've stopped taking the meds in mid-January, it would seem to me that you would NOT have to wait six months for a conclusive result. Three months past your last condom break/bareback should be sufficient. You'd have to be very immunocompromised before your body would take a long time to produce antibodies. At the very least, a test three months past your last dose of immunosuppressant drugs should be sufficient - as long as that is also three months or more since your last exposure.

Good luck with the testing and good luck sorting this all out with your partner. Along with the condom good sense you've already listed, make sure that there is no air trapped in the tip of the condom when he puts it on (maybe YOU should be putting them on) and make sure you're using PLENTY of lube.

Ann
« Last Edit: March 12, 2009, 08:57:47 AM by 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 beck

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Ooups... sorry about that... thanks for consolidating my posts for me.

Thanks for your input Ann. I read it this morning and then I talked to him today.... or at least tried to. It didn't go very well. He got all quiet and seemed rather angry but wouldn't say why.... so I don't know for sure if he was angry because I was wrong or because I was right. But the more I think about it the more I think I am right.... he's always been very dismissive when I test negative but then suddenly interested when I get a false positive (which has happened way too many times in the past). He's also suddenly interested in every medication I take. Also, he makes me feel like I'm overreacting to his serostatus when I want to use condoms and kind of scoffed at me and said "what am i going to do with you" when I sought PEP after an exposure.

Also, it doesn't really matter what the studies are for heterosexuals and/or homosexuals. Get back to me when they know about people whose sex isn't "F" or "M", but "X". Which is why I can't understand why he'd be worried I'd leave him... he knows what dating is like for me.... I often tend to see it more as a disclosure nightmare than fun.

As far as testing goes I called my doctor. She says since my WBC is 0.1 (normal is 3.8-10.8 thous/uL for this test, and around 20-30 for me) she wants to wait for the full six months but I'm not exactly sure what that has to do with anything. She was in a hurry and said she'd explain at my next appointment which isn't for another couple of weeks.

The medication I was on is azathiroprine, btw.

Thanks for the tips Ann but I'm already using plenty of lube and putting the condoms on him myself (because he looks at them like they're something he's never seen before).

I don't know... I'm really into him and I want this to work but on the other hand maybe it's time to just throw in the towel.

God, I feel duped.

Anyhow, thanks again Ann for your input.

Offline Ann

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Beck,

OK, now that we know what drug we're dealing with, I can answer more fully. It took me a while to track it down as you'd spelled it wrong - although it's a common misspelling. (there's no R in the word)

Azathioprine is used as an anti-rejection drug for kidney transplant, as well as to treat rheumatoid arthritis (which is why I suspect you were taking it). It commonly causes leukopenia (low WBC count) and it can also alter antibody production. HOWEVER... it is also well metabolized and rapidly eliminated from the blood and no azathioprine can be detected in the urine after eight hours. You stopped taking it mid-January and it should no longer be affecting your ability to create antibodies.

You can test at six weeks after your last exposure for a good indication of your status as the vast majority of people who have actually been infected will seroconvert and test positive by then. A negative six week result MUST be confirmed at three months. Your doctor is being cautious by saying you need to test at six months and while I would not expect a three month negative to change in your circumstances, you might want to test at six months purely for peace of mind - or as I said earlier, three months past your last dose of this drug, provided it is also at least three months past your last exposure.

BTW - hiv does not usually cause leukopenia. While it is true that it will lower a sub-set of WBC (CD4s), it does not affect the general WBC count itself. I've been poz for years and my WBC is always within normal ranges, even when my CD4 count has been low.

As for your relationship, it certainly does sound like he wants you to be hiv positive just like him. You are going to have to decide what is more important to you - your relationship with this man or your health. If you continue having condom failures when he's topping, you will end up positive sooner or later. You need to think long and hard about how you're going to feel about this man when this happens - will you still be so "into him"? And just for the record, I don't think he's evil, I get the feeling he's just terrified of being alone with hiv. If you really want this relationship to work, perhaps it's time for counseling. If he won't go with you, go on your own. You need to understand why you're willing to put your life and health at risk for someone who is so cavalier about the possibility of infecting you.

Keep us posted.

Ann

PS - something you need to keep in mind.... Autoimmune diseases are often the cause of false positive hiv antibody results. As you have an autoimmune condition, you will probably get more than your fair share of false positive results. Do you really want to put yourself in the stressful position of constant "accidental" exposures and frequent false positives? (one of which will sooner or later end up being a true positive...) Just something to think about. Take care of yourself - protect your negative status!
« Last Edit: March 13, 2009, 08:11:18 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

 


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