vaginapagina | [Anonymous Post] I'm afraid I may have HIV

[Anonymous Post] I'm afraid I may have HIV

Hello, VPers. As you're probably aware, from time to time the VP Team makes posts on behalf of people who wish to remain anonymous or who do not have LJ accounts. This is one such post. Thanks in advance for your helpful comments!

P.S. For more info on anonymous posts, see this link.

Jocey
For the VP Team

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I was tested about a month ago for HIV, and according to my PCP, the results were negative. I say "according" because my PCP, for lack of better words, is a pain in the ass. I even called today asking if I may have the blood work script with the results - to actually SEE it and ease my mind a little. Of course, I got forwarded to the secretary who was of no help what-so-ever, and couldn't, or shall I say, WOULD NOT go about doing/requesting such from my doctor - given I provided her with proper information, even.

Needless to say, I am scared shitless right now. I'm what you might call a cyberchondriac. I keep digging, digging, digging throughout the web about HIV symptoms, the physical attributes of those with HIV/AIDS.. And now I'm finding little things about myself which make me think "This, and that, and this - all of them could be signs!!!" I think I've actually brought myself to a point where I really DO believe I have it - even though there's that great significance I actually do not, considering my research.

My worries stem from, basically, having felt like crap for the past several months. Currently, or THIS month rather, my glands have been swollen (though no sore throat), my chest breaks out into a rash every-so-often/get itchy all over the place, and sometimes I feel slightly feverish - which to me, so I've read, could be HIV. Could also be my body fighting against some odd strain of virus, or allergies... Can you tell that I'm driving myself insane?

Last I had unprotected sex with the, ugh!, "junkie" in question was mid-late August. Understood there's a window period, but the "vast" majority will test positive within 25/28(?) days. So I'm wondering if it's safe to say I am, in fact, negative.

Another question: Because my PCP obviously does not care about her patients, and I had to BEG to get the blood work done in the first place, I ordered a home testing kit from Home Access online. If I use that, say, late this month, and it comes back negative, am I THEN, without a doubt, negative?

Again, thank you all so much!!!

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You know, your fears remind me a lot of another recent poster who was going through an extremely similar situation. Because the situations are fairly similar, I will link you to my responses to that poster here. (http://community.livejournal.com/vaginapagina/12206218.html)

Here's the quick facts: 97% of HIV positive people will test correctly within three months of exposure, using the standard HIV antibodies test. That means that, basically, the vast majority of people who test negative after three months since exposure are indeed negative. To be eliminate the tiny chance that antibodies hadn't developed yet, the test can be repeated at 6 months following exposure.

However, as you can see in my response to the other poster, the thing to remember about HIV infection symptoms, called "acute HIV infection," is that they generally show up between two to four weeks following infection, and that they usually resolve within a month. Additionally, once symptoms have developed, there will be detectable HIV antibodies within the blood stream -- so if the symptoms you are experiencing were related to HIV, the test would almost certainly detect those antibodies.

In other words, the symptoms you're experiencing now have been going on for too long to indicate that it is acute HIV infection, and it would be extraordinarily unlikely to experience acute HIV without producing detectable antibodies.

Basically -- you are almost certainly HIV negative. (Reading up on the transmissibility rates for vaginal intercourse may calm your fears somewhat too -- even if a partner is HIV positive, the chances of getting HIV from each incident of vaginal sex is about 1 in 1000).

The only way to eliminate the tiny, tiny chance that your last positive is not correct is either to seek out an HIV RNA test (which I'm not particularly familiar with how to access, and are said to be expensive), which has a much tinier window (about a month), or to take another test after it's been over six months since the last time you were sexually active with the partner you're concerned about.

So take the home test if you like -- but it likely won't tell you anything you don't already know, which is at this point you are almost certainly negative, and the next step in eliminating any tiny possiblity is taking another test around late February.

Anyway, I hope that advice helps, and that you can keep reminding yourself that you are almost certainly, totally, positively HIV negative. :)

The only way to eliminate the tiny, tiny chance that your last positive is not correct is either

Ugh, last negative. :P I get my terms jumbled up too much.

I was just going to add since you already bought the home access test you could decide to wait a few months before taking it and sending it in. this way it would count as the 6 month bracket. just an option I suppose :)

I just wanted to thank you for such an amazing, informative and supportive comment.

:)

Fear of HIV is something that hurts so many people. Which is understandable, because HIV and AIDS is such a horrible thing that has devastated far too many lives around the world.

But I find that the flipside is -- the facts about HIV (not the "symptoms" you can read about online, but the actual facts of transmissibility, prevalence, and testing) are actually far more comforting than the very scary picture we see of HIV / AIDS in the media at large, or in sex-ed classes.

Overall, I think we're taught to fear HIV / AIDS... be terrified of it, even. So it's no surprise that incidents of questionable safety can leave so many of us scared almost to death. But there's no reason to be so scared -- that doesn't help anyone -- just informed and aware.

One of my students is a forty-year-old African-American man who manages to LIVE, go to school AND he is on scholarship. He is always smiling, and has been living with full-blown AIDS for over ten years.

We can all learn from him too. :)

Absolutely, yes.

My ex used to work at a combined gay bar / HIV - AIDS charity organization. Several of the employees there were HIV positive, including a manager who contracted HIV in the early 80s and watched many of his friends and lovers die before anyone had put a name to the "gay disease."

His story was amazing (especially for me, having grown up post-HIV); but always it was sadly capped off by the fact that he worked at the bar because his former job had found a way to fire him after finding out he was HIV positive.

If more people took the time to get to know, really know, people like your students and my ex' manager, then that sort of situation wouldn't have to happen again.

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i think its illegal to lie to a patient about that sort of thing. and i agree with the above poster about the secretary thing. it sounds harsh, but, well, your doctor has lots of patients. its not that she doesnt care, its just that... youre not the only one. however, i also think you should have been allowed to see your medical chart. you have a legal right to.

i get hives on my chest pretty much daily, especially after a hot shower, or after playing with my friends cats/dogs/horses, or if im really cold, or if my shirt is made of slightly itchy matieral, or if i skipped rubbing lotion on after my previously mentioned hot shower. minor skin rashes can basically be from anything. any time your skin gets annoyed.

as far as swollen glans, its winter, and everyone is passing around a cold or flu or some sort of bug. have you thought about being tested for mono instead? mono symptoms last for months, and basically make you feel tired and generally crappy. swollen glans is a symptom.

as far as home tests... i personally would never trust a home test with something as important as my HIV results. i would, however, trust my doctor, even if i personally disliked her. they are required by law to medically treat you. they are required by law to not lie to you about your medical results. they would loose thier license. or, say you *were* HIV positive and you died because you were told you were negative, they could be sued for manslaughter, because you thought you were fine and didnt seek treatment and died as a result.

also... i second ohmyvagina's suggestion of talking to a doctor or councelor about a possible anxiety disorder or depression.

best of luck to you.

I'm no expert but since you did test negative I would not freak out. The more you research your symptoms and over analyze things, the more symptoms you will get and the more convinced you will be that you do indeed have HIV.

I will say however all of the symptoms you are describing can be attributed to a cold or flu bug and since this is the prime time for these sorts of illnesses that is most likely your problem.

From my research I have found out that 97% of people with HIV test positive within 3 months. You did not specify the first time you had sexual contact with the person in question but you did state the last time was in August and since you were tested for HIV last month that would have been 4 months since you might have been exposed.

My advice is to wait a couple of more months and test again as there is a (very small) possibility that you could be infected. If you test negative a second time then you should feel confident that you are not suffering from HIV. The odds are really good though that you don't not have HIV. In the meantime I would suggest that you try and get plenty of sleep and make sure you have a set sleep schedule, also make sure to eat healthy, take vitamins and get plenty of exercise. All of these things will make you feel better if you are just suffering from a regular virus.

Also this might be good to mention-it sounds like you could possibly be suffering from depression or an anxiety disorder. Have you seen those commercials where they talk about "Depression hurts everywhere"? I suffer from depression and anxiety which I think I knew deep down but it wasn't until it was brought to my attention by a doctor after having gone in several times for feeling like overall crap that I really realized it. Try getting the sleep, eating healthy and exercising. It can't hurt and it sounds like it could be very beneficial to you. I know it made a world of difference for me when I was feeling under the weather for months on end.

I know that you wanted to remain anonymous (heck this is my anonymous journal too!) but if you ever need someone to talk to feel free to email me- rinster85@gmail.com

Best of luck to you!

I agree with xzarakizraiia. you should go back to your dr and ask about other things that could be causing these symptoms you are experiencing.

and I too am an avid online reader and I tend to think I have things I dont really have and sometimes panic myself. Hey, Last week I thought I had bacterial vaginosis cause my discharge texture changed and it was nothing at all, but i read a millionthings on BV and totally thought I had it when i went in. I think your test was probably very accurate, but since you've already ordered an at home one, save it for a few months and then take it as your 6 month one.

I would talk to another doctor if you feel this one can't speak to you respectfully. If there's anyone else in the same office, you *may* (though it might make drama) be able to talk to them and ask them to look in your chart and find it, and be able to see it yourself that way.

I agree with everyone else. I just wanted to ad you LEGALLY have a right to your medical information so all you have to do is either go into the office and sign a medical release form or write/fax them a letter stating you want a copy of your HIV test, and they must legally release it to you.

What kind of HIV test did you take? Because there are two different levels of confidentiality: confidential, or anonymous. If yours was the anonymous kind, then your doctor CANNOT (http://www.aids.org/info/testing.html#privacy) give you the written results.

Edited 2008-01-08 05:48 (UTC)

Beyond just wanting to echo want everyone else has said here about most likely being HIV negative, it almost sounds to me like you have Mono....

Yes, this is a good suggestion, too!

If it will give you peace of mind, use some of that cyber time to look up patient's rights in your state. It is clearly unethical, and potentially illegal, for a doctor to knowingly give a patient incorrect test results, especially for a communicable disease. If you'll feel better getting another test - and I agree with everyone that you're most likely negative, but just for peace of mind - try your local PP if you have one.

Hope everything works out okay for you!

Though I did once have a doctor say, "Yes, yes, that test was fine. Now, your cholesterol levels..."
Me (thinking "they tested my cholesterol levels too?): What about them? Are they high?
Her: Well, they're not that unusually high...oh hang on a minute, these aren't your results at all."

I think she was looking at my mother's records by mistake. It could have been really Not Fun if she'd started reading my test results to my mother instead.

Anyway, no doctor will knowingly falsify or lie about an HIV test result. There's probably a tiny chance of an administrative error, so if you're truly worried then retest after 6 months, but the chances are very very small.

Have you by any chance considered that maybe your symptoms have nothing at all to do with diseases? You could be experiencing the symptoms of a food sensitivity that's finally catching up to you. After the birth of my 2nd child, I just could NOT get back on my feet, sleepwise. I was constantly fatigued, even when she was 8mo old snd sleeping through the night like a little pro. There were lots of other symptoms, including a re-appearing rash here and there, headaches, intense heartburn, and extreme moodiness.
Anyway, long story short: I have a gluten allergy. I've had it my whole life and didn't know it and it just got to the point where my body could not take it anymore. It's worth looking into because food allergies can cause all kinds of messed up things in your body and are often undiagnosed because unless they are anaphylactic, people tend to dismiss them.

Have you checked into seeing if you might have mono?

A lot of HIV symptoms are very similar to the ones you get with mono.

I want to reassure you that you are very, very, very likely to still be HIV-. :) In a lot of ways, having access to information is a very good thing. However, in others, it can totally freak people out. HIV is something that has such a terrible stigma in our society. HIV is scary, for sure, and it's not something that I would want ANYONE to have. But HIV is not a death sentence. Last year in my sex ed group we had a speaker come in who had been living with HIV for over 20 years, and he's still doing fine. The harsh realities of him showing us his daily regimen of pills and the fact that he couldn't do certain things anymore because his risk was too high was no fun, but he still had a good quality of life - when he thought he'd be dead 15 years ago.

HIV symptoms (and a lot of STI symptoms for that matter) are tricky because they're so much like anything else. HIV infection is generally noted by flu-like symptoms within a month of infection. But as other people said, you came up negative, and it's cold/flu season.. and honestly, if you're worrying constantly about having HIV that's probably going to take a toll on your physical health as well.

And your fear isn't yours alone, either. I still get really worried and scared that I might have HIV sometimes, even though 1) I'm a sex educator and know the basics of HIV like the back of my hand, especially how to protect myself (condoms are friggin amazing about it) 2) I haven't had condomless sex with anyone except my current partner, 3) I've been tested. So then I just rationalize, okay, I was tested a year ago, I'm in a monogamous relationship, I am positive I do not have it.

So I hope with all our answers you understand that you are okay. :) I also want to echo the other suggestions of maybe being seen for an anxiety disorder or depression or mono for your general physical not-so-great feelings.

I haven't read the other comments so this may have been touched already, but when I was tested for HIV they didn't put my name or anything that would identify me at all on the blood samples. Rather, they gave me a number, and put the same number on the samples. I was having other tests done the same day and while I could call and request those results the same way I would any other results, I had to go through entirely different people to get my HIV results. It was a huge confidentiality thing, so that might explain (though not excuse)the confusion in getting your results.

I know there are plenty of clinics and places that do free confidential HIV testing. Maybe you could try one of those

I am not sure if you live in a big enough city that would have these resources, but the last time I was tested, I went to a place where they test during these very specific hours of the day, you sign up on a clipboard and your name gets called when it's your turn. A certified counselor has you swab the inside of you mouth, up along the gum line, and then talks to you while the results are being processed about all the different actions you can take whether the result is positive or negative. Your name is not recorded, you are just given a number. Then about fifteen minutes later the results are there, and you talk more about your options. It's all free and anonymous, and maybe getting a second opinion right now before you take the home test in a few months would make you feel better. I found the one in my city by googling "free hiv testing". I hope you are doing well and not worrying too much - I know what it is to frantically comb the internet getting more and more scared with every link you click on!!

You'll probably actually have to physically go down to the office in person and sign a Release of Information (ROI) because they can't release any information/paperwork over the phone/via fax without one due to HIPAA mandates.

You might have to go in person to get your medical records--whenever I've had mine released I've had to put in writing what record I wanted and sign off on it. Sometimes there is a photocopying fee as well.

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[Anonymous Post] I'm afraid I may have HIV

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