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Author Topic: 99% sure I have HIV, could use some help  (Read 3312 times)

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Offline WannaHaveHope

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99% sure I have HIV, could use some help
« on: April 02, 2022, 04:30:09 am »
Hello everyone

I was exposed over a month ago, and since then I have been very sick. Long story short, the person took off the condom at the end and came in me without consent. Based on things I've learned about HIV and otherwise since then, it's 99% likely he has HIV, lied about it, and has had it for a long time.

Since exposure (started shortly after, within the 1st week and symptoms have arisen or gotten worse or more consistent since), I have overall elevated temperatures with low grade fevers (100F) for many hours of the day, sometimes 101ish for a bit or higher quick spikes (it normalizes later in the day though it is slightly elevated from what my normal temp used to be, at night its normal/lower but im very very cold), I have muscle aches and pains and twitches all over my body, especially my forearms, back thighs, in the beginning calves, and butt muscles, along with joint pains. I have lost over 10lbs in a week or 2 (muscle as well), which eventually stabilized but now I am losing weight again, and since losing weight my body shape has changed and my thighs and butt are thinner but my lower belly and chest are taking on more weight in those areas then before. My skin has on and off bumps and skin blemishes that are not normal for me, my mouth has sores/bumps on the inside that come and go in multiple spots that are not normal for me, my tongue has a burning feeling most of the time and has a light white coating/color most of the time as well (not sure if its thrush or very light grade of it?). Also have subtle neurological issues as well, and have not been able to sleep properly, keeping waking up on and off every night.

I got an HIV RNA PCR test and 4th gen antigen/antibody test 19 days after exposure, and also 4th gen tests 28, 30, 37 days after exposure. I also got a 4th gen test that seemed less modern (a CMIA) and some type of NAT (TMA Panther something?) viral load test at 33 days after exposure as well from an infectious disease doctor (who doesnt seem to have updated his information since the early 2010s from HIV and is stubborn and I dont trust his judgement at all). All these tests are negative so far but based on my continuing symptoms I cant trust them. I also had a CD4 count of 675 33 days after exposure, which while technically in the normal range, seems low for me (I havent had a cold or flu in over 10 years, I RARELY get sick, also always had strong reactions to the covid shots too). My CD8 and CD3 counts were on the higher end if that means anything in this, and from 30 to 33 days after exposure, i had my platelets measured and it dropped 20 points, which I know is a sign of acute infection potentially (my lymph % dropped a little bit too).

I think the person who exposed me has had HIV for a long time and has a drug resistant strain. I learned that mutated drug resistant strains dont replicate as fast as wild HIV strains do, so that would make sense why it hasnt been detected thus far. I also have a reactive immune system so that would make sense why i got sick/symptoms so quick and continuous

I hope I dont offend anyone saying I'm pretty sure I have HIV without confirmation, but based on all my symptoms that have been continuous (severity has gone up and down and up but overall consistent) and how it lines up with acute HIV infection symptoms and how and whom and when I was exposed too, I dont see how it doesn't turn up positive soon.

I will be getting one more 4th gen test right after the window period, and will be seeing a more competent infectious disease doctor in weeks time, but overall think it will be positive. Just looking for overall advice and opinion and input if anyone could spare it. If you have read this far, thank you for your time

Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #1 on: April 02, 2022, 04:46:23 am »
Also important I have been extremely tired and worn out multiple times, 2nd-3rd week was consistently bad and last weekend was extremely bad as well. Overall very tired worn out and weak, work has not been busy or anything that would wear me out otherwise. And my overall bloodwork hasn't shown anything out of the ordinary other then what I've mentioned

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #2 on: April 02, 2022, 05:16:06 am »
Hiya,

Read your post three times.

Sorry to hear that the person took the condom off during intercourse and that you have been feeling unwell. 

About your issues, nothing you mentioned is HIV specific, and some of it has nothing to do with HIV from this recent event, regadless of your HIV status. Please continue to work with your healthcare provider instead of focusing on HIV, and I hope you feel better soon.

Regarding your HIV status, we recommend you test at six weeks post-exposure with a blood-drawn lab HIV antibodies test, and a non-reactive result at that time would rarely ever change. Generally, retesting isn't needed, but you can at three months if you wish.

Here's what you need to know to avoid HIV infection:
Use condoms for anal or vaginal intercourse correctly and consistently, with no exceptions. Consider talking to your healthcare provider about PrEP as an additional layer of protection against HIV

Keep in mind that some sexual practices described as safe in terms of acquiring HIV still pose a risk for other easier acquired STIs. So please do get tested at least yearly for STIs including but not limited to HIV, and more frequently if condomless intercourse occurs.

Also, note that it is possible to have an STI and show no signs or symptoms, and the only way of knowing is by testing.

Kind regards

Jim

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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #3 on: April 02, 2022, 05:31:37 am »
Hey Jim, thanks for taking the time to read and respond to my comment. I've been reading POZ forums for information and advice the last month +, and I see you a lot (moderator, duh). Regardless of my HIV status, thank you and everyone here for the information and advice for everyone who comes here for advice and help.

I unfortunately don't have links at the moment, but from what I've read a lot of these symptoms (including some odd ones) did seem to overall match up with acute infection and with timing I thought. Just seems like too much of a coincidence of timing, but yes I will test myself one more time at the 6 week mark and see from there. Unsure who to go to at this point if it's not HIV, but I will figure it out. Thanks for the well wishes Jim, same to you

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #4 on: April 02, 2022, 05:47:44 am »
You're welcome.

Quote
but from what I've read

Coincidence happens, I had a piss this morning, flushed the toilet and then it started to rain. This does not mean my having a piss caused it to rain.

The same goes for your issues, and I have given you some insights; no offence, it is obvious you have been reading/collecting bits of information however it means nothing without correct context or more profound understanding that you simply can't gain within the short time span of weeks or months by reading stuff on-line.

My advice is to stop reading up stuff and instead work with your healthcare provider and test at the six-week mark. 

Jim.

p.s

Quote
Unsure who to go to at this point if it's not HIV, but I will figure it out.

You start with seeing your general practitioner. Explain to them what you are experiencing and keep your theories to yourself.
« Last Edit: April 02, 2022, 05:50:52 am by Jim Allen »
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #5 on: April 02, 2022, 08:11:41 am »
Hopefully it is just coincidence.

I didn't just look up bits here and there, I looked up a lot of information but specifically acute HIV infection symptoms and I've checked off almost all symptoms.I've tried to analyze objectively, the overall picture with information and perspective. Hence why I'm worried and looking for outside perspectives from the HIV+ community. But I appreciate your input Jim and acknowledge I could be wrong.

Just a waiting game at this point for the 6 week test. Do you or anyone know if being infected with drug/multi drug resistance strains could cause issues with testing accuracy? Specifically RNA/antigen (i would assume antibodies would be correct after window period regardless). Considering how many tests including recently are negative i just wonder.

Also my GP is useless I'm pretty much left to my own to find specialists  lol i need a new one I think...




Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #6 on: April 02, 2022, 08:47:51 am »
Hiya,

 ::)
Quote
no offence, it is obvious you have been reading/collecting bits of information however it means nothing without correct context or more profound understanding that you simply can't gain within the short time span of weeks or months by reading stuff on-line.

Acquiring HIV with resistance isn't going to change the HIV screening window period.

You don't need RNA testing.  Antigen testing isn't offered as standalone screening for good reasons, it's combined with antibodies.

If you are unhappy with your GP then start looking for a new one sooner than later.
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #7 on: April 02, 2022, 09:06:07 am »
I know the window period isn't conclusive until after it's passed, but does that mean RNA/NAT and the antigen parts of the tests are a waste? Meaning they wouldn't have possibly picked it up by now, 30-37 days after exposure? (Or antibodies made). Considering if my symptoms were in fact from infection too

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #8 on: April 02, 2022, 09:36:48 am »
About your issues, nothing you mentioned is HIV specific, and some of it has nothing to do with HIV from this recent event, regadless of your HIV status. Please continue to work with your healthcare provider instead of focusing on HIV, and I hope you feel better soon.

Regarding your HIV status, we recommend you test at six weeks post-exposure with a blood-drawn lab HIV antibodies test, and a non-reactive result at that time would rarely ever change. Generally, retesting isn't needed, but you can at three months if you wish.

Your symptoms are not related to HIV from this event. I already read your testing history and recommended you retest at 6 weeks with an antibodies test to confirm your HIV status, as I mentioned in my initial reply.

The RNA test (costly) wasn't needed and the antigen part of the 4th gen test is nice but not conclusive, this is one of many reasons it's not a standalone component in HIV screening.
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #9 on: April 02, 2022, 09:42:46 am »
Alright, I understand. Thanks for the advice and input Jim, I appreciate it

Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #10 on: April 02, 2022, 11:33:21 am »
Sorry to keep spamming this I'm just sick and sure that this person infected me, most likely on purpose and I'm so scared. I have pancreatic problems already, combined with this I don't know how I will make it (and if this guy did in fact expose me knowingly, he is not virally suppressed and has drug resistance for sure probably multi strain, hes older too). I know i need to wait for the test but I'm fairly certain it will be positive. If it wasn't for the drug resistance and pancreas/digestive problems i know I'd be okay mostly but with these factors......

I know everyone has their own battles and many people have had it worse, I just have no one to talk about this that is knowledgeable and I just need to talk to people who do

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #11 on: April 02, 2022, 12:07:13 pm »
Quote
he is not virally suppressed and has drug resistance for sure

How do you know? You factually don't know this as you don't have access to his medical records and the guy being older has nothing to do with anything.

Anyhow, even if you did acquire HIV with some pre-existing drug resistance, it will not be the end of the world. There are plenty of drug combinations, you would not be ending up on salvage therapy or with resistance to all four drug classes.

In fact, acquiring HIV with resistance to all four drug classes is so rare that I've only heard of it happing once, it was so unique that they published a paper on it. 

So stop stressing about issues you don't have!

Getting back on track.

The results you already have means it's already 90+% certain you did not aquire HIV. Stop stressing and bypassing your GP. See a different GP if you must but talk to a GP about whatever is making you sick and treat it.

Test at six weeks post-exposure with a blood-drawn lab HIV antibodies test, and a non-reactive result at that time would rarely ever change.
« Last Edit: April 02, 2022, 12:19:18 pm by Jim Allen »
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #12 on: April 02, 2022, 12:34:50 pm »
Correct, but I'm basing it off the fact that if I do in fact have it, he is not undectable and has potentially built drug resistance, being older I mean he mightve had it for a long time and had statistically more time building up resistance (I don't apply this to everyone just this specific person who ended up being a liar and a really bad person and I'll leave it at that. A lot of my assumptions are based on the character and intent of this person based on actions. I dont generally apply this to anyone else in the HIV+ community)

Yea i agree, I'm not worried about total drug resistance. I do worry that i will have to be forced to take drugs or more drugs, that will cause issues with other underlying issues (having my options more limited). Thats a bridge I'll cross if/when i get to it

I'm still not sure I'm out of the woods, but I appreciate the response  Jim, I will figure out my other health problems too and get that 6 week test. Thanks again, i will update here regardless of the result (is that okay? )

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #13 on: April 02, 2022, 12:50:36 pm »
Being older or longer on HIV treatment does not equal greater drug resistance, that's not how it works. Also, as mentioned it's rather irrelevant at the end of the day.
 
Quote
Yea i agree, I'm not worried about total drug resistance. I do worry that i will have to be forced to take drugs or more drugs, that will cause issues with other underlying issues (having my options more limited). Thats a bridge I'll cross if/when i get to it

You won't be forced to take treatments for any of your medical conditions in life, but without treatment, certain issues could lead to an early death.

The odds are that the longer you live the more manageable conditions you will have that require treatment. Thankfully meds keep developing and getting better with fewer interactions all the time.

Quote
I appreciate the response  Jim, I will figure out my other health problems too and get that 6 week test. Thanks again, i will update here regardless of the result (is that okay? )

You're welcome.

If it's as expected a non-reactive result then I don't need to know. Not posting about it is the answer. You only should come back and post if it's a reactive outcome.
« Last Edit: April 02, 2022, 12:53:27 pm by Jim Allen »
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #14 on: April 02, 2022, 04:51:23 pm »
Being older specifically meaning he's had more time/years to miss medication and allow his strain to mutate, that's what I meant.

I will obviously take medication to save my life, but my condition and HIV/medication wont mix and it'll be bad. Pain, malabsorption etc. Thats what I worry about and am dealing with already but one step at a time.

Lets hope for everyone that medications and treatments keep increasing and becoming better at a faster rate, especially in this crazy uncertain world we live in. Gotta hold out and hope for better.

Understood! I personally still disagree, but I'm more open it can go either way. Hopefully we never talk again,  if thats the case, I wish you and everyone here the best in everything

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #15 on: April 02, 2022, 06:00:57 pm »
Quote
Being older specifically meaning he's had more time/years to miss medication and allow his strain to mutate, that's what I meant.

Big gaps in this logic.

Anyhow, it's not a debate, just test when due, in the meantime try to relax and then move on with your life.

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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #16 on: April 03, 2022, 07:33:05 am »
I understand, my theory is he intentionally exposed me to HIV but I'll leave it at that (and pray I'm somehow wrong)

Thanks Jim. Hard to relax though when I continuously have abdominal and digestive issues though, I'm 99% sure I have Chronic Pancreatitis even before exposure. I think I am infected with HIV, causing reaction/progression of my CP, probably causing all my weird symptoms that dont seem typically HIV related. Need to wait to see my gastro and even longer to see ones that might be more useful.

Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #17 on: April 04, 2022, 06:27:02 am »
Developing mouth sores the last couple of days, my fever seems to be calming down from last week. I'm probably over/on the downside of seroconversion, continue to lose weight/redistribution of weight (Lipodystrophy) again over the last few days.

Gonna get tested soon, but I should be an official POZ member shortly

Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #18 on: April 04, 2022, 06:39:44 am »
Nvrm fever still here, but feels like it's reduced in severity/length the last few days somewhat

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #19 on: April 04, 2022, 06:43:31 am »
Hiya.

I wish you well but simply test to know your HIV status and work with your doctor to treat the other issues.

Please don't post about your symptoms any further. Thank you.

Jim
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #20 on: April 06, 2022, 05:08:53 pm »
Sorry Jim, waiting to see doctors still, I know I'm not positive (yet) but I'm 99% sure I am and could use some support and I don't have many places to turn too, sorry I keep posting. Keep having mouth pains and sores and tooth pains and white gums now (and my consistent tongue white cover), I've looked up symptoms of HIV and I know mouth problems are one the first to show up (it did over a month ago but getting worse). I know you said the symptoms i said weren't directly related (potentially) and I know you don't know me or can trust me and my analysis and you need to do your job as an administrator but this doesnt seem normal i feel like this is some weird strain that progressed quickly and somehow was missed.

Gonna get HIV tested really soon so should have an answer shortly.

Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #21 on: April 07, 2022, 05:00:52 am »
Jim, serious advice, if it's a super infection strain or some really progressive strain will I still be okay, will the medications still work? I figured out this guy is hypersexual with no regards for his own health or others and I'm extremely concerned and scared and my symptoms progress (gonna get checked)

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #22 on: April 07, 2022, 05:08:01 am »
Seriously stop posting about your symptoms. I've explained it and if you continue it will lead to a ban.

Quote
I figured out this guy is hypersexual

Ugh he could have fucked the entire town and be HIV negative or had sex only once and picked up HIV. Unless you personally witnessed him fucking everyone you have no real idea how sexual active he is or if he protects himself through PrEP, TaSP or condoms.

Hypersexual by who's standard. For all I know by my standards your the village bike or the local nun 😂

So stop it, understand that you are stressed but enough now.

Presuming that's he is living with HIV and not taking  medication then you had a risk. It's not complex, get tested and that the only thing that will confirm your HIV status.
« Last Edit: April 07, 2022, 05:17:51 am by Jim Allen »
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #23 on: April 07, 2022, 05:17:30 am »
I'll stop posting my symptoms, sorry Jim please don't ban me, this forum is important and going to be important to me soon.

Hypersexual as in he can't control his urges and will have sex regardless of his HIV status and health risk to himself or others. The fact he intentionally exposed me and lied about it after the fact and beforehand I made it clear (and he agreed) to use condoms the whole time proves a lot of that. And he's ALWAYS active on the hookup app I found him on. Thats where I'm getting at and it would lineup with stuff i mentioned earlier (wont talk about it though).

Will be tested very soon, regardless of our disagreement and my annoyance thanks for replying Jim

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Re: 99% sure I have HIV, could use some help
« Reply #24 on: April 07, 2022, 05:19:18 am »
Quote
Hypersexual as in he can't control his urges

You can't diagnosis that and even if that was the case it's totally irrelevant!

It's not complex, get tested and that's the only thing that will confirm your HIV status.
« Last Edit: April 07, 2022, 05:28:15 am by Jim Allen »
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #25 on: April 07, 2022, 05:20:14 am »
Did you edit your post after you initially responded btw? Seriously asking to make sure I'm not losing my mind lmao 🤣

Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #26 on: April 10, 2022, 07:54:22 am »
My 6 week test was negative but..... something still doesn't make sense I still think I have it.

I mentioned all my symptoms before (won't repeat ) and many still continue.

Is it possible somehow if it's a very mutated weird drug resistant strain that the tests wouldnt pick it up yet? I've read information that mutated strains dont replicate much or as well so the viral load could still be low somehow, including antibodies? (Asking a question). These tests are supposed to be 99% accurate and i shouldve made antibodies by now, but my body hasnt been the same since exposure...

I've been seeing doctors with no answers, seeing another infectious disease doctor soon hopefully get some answers and rule out or confirm HIV.

Can I post the article I got my information from? Its actually about a drug resistant strain to all classes from Europe, I think Jim mentioned it earlier too

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #27 on: April 10, 2022, 08:07:40 am »
Hiya,

I've already answered that regadless of drug resistance or mutations, type or subtype the window period of 6 weeks is the same and even that is being extremely cautious.

You didn't acquire HIV from the concerned encounter, please work with your GP to treat the other illnesses and issues you do have and to be clear I wish you well but if you post about this again it will result in a ban from the forum.

Best, Jim. 

Quote
Can I post the article I got my information from? Its actually about a drug resistant strain to all classes from Europe, I think Jim mentioned it earlier too

Not interested and it changes nothing. Whatever you think you have read it doesn't change the answer I have given you already and trust me I've read it and I've been reading, studying and learning two decades more than you about HIV. 
« Last Edit: April 10, 2022, 08:36:41 am by Jim Allen »
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Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #28 on: April 16, 2022, 07:52:51 am »
Posts removed that were outside this thread and as warned 28-day ban for continuing to post when asked not to do so about this encounter & symptoms even after your non reactive test results.
« Last Edit: May 26, 2022, 07:18:23 pm by Jim Allen »
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Offline WannaHaveHope

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Re: 99% sure I have HIV, could use some help
« Reply #29 on: May 25, 2022, 09:10:42 am »
Hello everyone

I was potentially exposed to HIV over 90 days ago. In the week after exposure, I started getting really sick and had many symptoms and body changes that persist to this day (the severity has improved the last month but symptoms still present). I've had many HIV tests, all negative. At 90 days, I got tested for HIV 4th gen antibody and RNA viral load, both negative. I know that should be without a doubt conclusive but so many symptoms and body changes right after exposure pointed to HIV so much.......

I saw many other specialists and doctors and bloodwork and tests to figure out what else it could be, no one has answers.

Recently i keep having consistent sore throats and dry cough too (its been on and off since exposure, but consistent more so the last 2 weeks, not covid,flu, strep). Also keep having mouth pains/burning and skin issues since exposure that have not stopped. (Not gonna name all the other body changes/symptoms too many)

Is there any possible way it's still HIV? I don't see how I wouldnt have made antibodies by now, my only theory is that it's a weird/new strain or something thats not registered for testing diagnostics (I know the odds are REALLY low but shit happens). Or maybe I somehow didnt make antibodies (doubt that). Is there any possibility that if it is some weird abnormal undiscovered HIV strain that the HIV antibodies would be different too/undiscoverable via current testing? If that's even possible, how would I even figure that out and who would I go to?

Kinda at a loss what to do at this point, my health has deteriorated since potential exposure, not recovering, symptoms persist, and I've seen countless specialists and done SO many tests for many other things. Timing, exposure, and symptoms matched up with HIV. But tests say no.

Could use some insight and input on this HIV wise. Otherwise I'll just get a rapid antibody test in a month, maybe check my CD4 counts at some point and just continue to live my life and see doctors if anything gets noticebly worse.

Offline Jim Allen

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Re: 99% sure I have HIV, could use some help
« Reply #30 on: May 25, 2022, 09:32:00 am »
Please continue to work with your doctor to treat whatever is making you sick, and stop focusing on HIV and coming up with imaginative but flawed ideas like new strains as it simply isn't HIV.

We have been over this, your symptoms have nothing to do with HIV from the incident, and you did not acquire HIV from the concerning incident.

Finally, as warned, you now have an eight-week ban for continuing to post when asked not to do so about this encounter & symptoms even after your non-reactive test results. If you come back again after this ban with more of the same, it will result in a permanent ban from the forums.

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Anyone who continues to post excessively, questioning a conclusive negative result or no-risk situation, will be subject to a four week Time Out (a temporary ban from the Forums). If you continue to post excessively after one Time Out, you may be given a second Time Out which will last eight weeks. There is no third Time Out - it is a permanent ban. The purpose of a Time Out is to encourage you to seek the face-to-face help we cannot provide on this forum.
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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You can read about HIV prevention here:
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Read about PEP and PrEP here
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