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The more you search for HIV - the more concerned you get?

I booked an appointment to see a GP today, and I feel great about it.   Please read this and answer the poll.  

Like many people on this board - I've been doing my own research to self diagnose rather than biting the bullet and going to the GP.    A case of trying to put off the inevitable whilst hoping the situation rectifies itself.    In the meantime, every little bump or lump or cough makes you search for that particular symptom, for weeks, months on end giving you intense anxiety!  And when your partner coughs - well, your stomach just drops and you start looking at them for more symptoms like a crazyman and start searching the net even more.

I've posted this - as I think, that if I searched and found this posting - it would have relaxed me a bit. And Im hoping it does so for others who find it.   The fact that you are reading in this forum, means that you are going through the same anxiety and concern as me and many others who are searching the internet looking for 'something' that says 'I dont have HIV - PLEASE, show me something that proves it'.   Does that sound familiar?

Of course - anyone that has risky sexual contact who then develops any type of symptoms, will start to come across all sorts of pictures, quotes, stories, symptoms that are highlighted in relation to HIV online.  Because we have come to trust the internet, we start to assume they must be correct.  It's like a smoker finding an ulcer on their lip and assuming the worst - when, it is just an ulcer.

I've learn't two things:  

1)The internet is full of websites that contain information that relates only to areas of popular interest or concern.   Anything that is 'uncommon or unpopular as a subject' is never really covered in detail, therefore less chance of appearing in results or Image results etc.
2)HIV, as it is related to the immune system, has many symptoms from all stages that are related to other common conditions and diseases, including common yeast infections and the flu - so anything you search for, could be (most likely) common - but you assume it is related to HIV!

If you put the two together, if you type 'HIV, Rash'   or  'Back Rash, STD'  'Fever, AIDS' into Google - you will often get results back that scare the hell out of you.    You then find words and terms, that you would never have typed in at all, that are related to HIV (ARS, folliculitis etc) and then search for those - scaring yourself even more.    

I know - I've been doing it for nearly 9 weeks, every day - often late into the night.     Sound familiar?

I've also posted one question about my symptoms, here, on the STD forum.   I wrote 500 word essay - just in case I missed something out.     Grace told me that it didn't sound like an STD, but of course to get it checked out. - However,  I would keep looking - because I did not have my mind put at ease.  Sound  familiar?

My own exposure of concern - was from unprotected insertive oral sex with a high risk contact for around 45 seconds.  Something I shouldn't have done (morally) and risk-wise.      However, was I to know that I could get HIV from this? No.  Did it even cross my mind when I got a burning symptom in my penis 2 days after exposure? No?     Did HIV come up as a result when I typed in 'Oral Sex STD' - YES..    Because some websites (those that take google advertising) tell you that you can get HIV from oral, without giving the exact details or references - you believe it to be true.   Did I then start freaking out on a downward spiral - yes.    I felt cheated that for all that 'you must wear a condom for sex or you get HIV', when I was growing up - no-one had told me that Oral Sex was a risk factor!  

Well - that's because Oral Sex is NOT a major risk factor.    If it was, you can bet there would be adverts about it in every college restroom.  I cannot tell you how many boards like this with health experts have repeatedly said 'Insertive Oral - no risk'  etc..        These are EXPERTS, DOCTORS and Health Organizations.   My new dread and infatuation with HIV symptoms outstripped any sane reasons for my symptoms and i kept ignoring the fact that all these people said 'no risk, no risk'.   The mere fact that I was thinking of HIV symptoms 4 days after exposure is just silly. But I was.  

So - when do I calm down? My fever has gone.  I still have strange itchy papules (you can bet I didnt know THAT word before I googled)  that appear and disappear on my arms, scalp and body.  I'm always lethargic ,sore stomach, even 9 weeks after possible exposure.   My girlfriend now has a dry cough, lethargic, vomiting and direhea - and had a few papules on her wrist.   She will recover then get ill again.  

I know that we have 'something' wrong with us, but reading all the advice here from Teak and others and on other boards-  tells me that my symptoms don't fall within the time frame nor 'all happen at once' factor etc for ARS (fever was BEFORE spots etc) - so I am starting to relax about the HIV thing.   But - the question is still 'what' is wrong.  It's still not  a pretty situation, but - I have finally accepted that these symptons are most likely to be something else and I should stop freaking out about the HIV bit.

What is wrong, I have worked out today  - is that I am scared to tell my GF about what happened.     If she find's something out about herself before me at the doctor - I can act 'surprised' and maybe push blame on her (sound familiar).  Whereas - if I just go to the doc for an STD check, I means I have to approach it with her and highlight my infidelity.     If I was single - then, I wouldn't have a problem getting checked out.       It's wrong, again Morally and Ethically and for both of our health.   But - it's a reality I have realized and have to deal with.

Her health is important.  The longer I leave it, if there IS something wrong with us - I am intentionally hurting her and myself.   I cannot continue to do that.  We would need treatment WHATEVER we have and the sooner - the better, as no amount of searching will make it go away by magic and time keeps on ticking.

So - today - I booked an appointment with my GP for next week.  To finally get a proper TRAINED, EXPERT up close and personal opinion and stop panicking over results online that I assume to be my diagnoses from some very poor quality images on a website that may or may not look like what I am experiencing.

I just read this over again.  I really do think it would've helped calm me down a bit and I hope that someone else finds it useful.  There is no substitute for a professional doctors appointment and tests and the longer we leave it - the worse we can get.  

I will let you know what happens, but with my new confidence I actually feel that the results wont be anything too scary - and that is making me feel a lot better already!





19 Responses
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Avatar universal
Glad this is helping people.

It gets better.  I had the rapid HIV test (it's been 4 months since 'possible' exposure and, what do you know.... it's NEGATIVE.        

It's like a mastercard advert people.

Searching the Internet for symptoms..... 100 hours
Sleepless nights 130 nights
Rapid Clinic test - 30 mins.
Result and Relief ...... PRICELESS.

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1 Comments
Thank you for creating the original post and all that added their own thoughs and life experiences. Like all I you I am living this and I was not even at risk, but reading this helps make me believe what I know is true. Medical professionals and tests are factual, not fear based, beleive them!
693413 tn?1233732272
I HATE wrongdiagnosis!  It is allllll wrong and way off.  Us who fear HIV all think the same way with the colds and random itches on the skin.  I went through that and I was SO HORRIBLE. It starts to get ridiculous.  You have to start saying, "ok get a grip!!" to youtself!
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Avatar universal
This is a great thread. Yes anxiety can be very powerful. I was in a low risk situation (precum in mouth...and a bit in throat). The most irritating thing is...i had dry skin on my calf and it was itchy. So I went to wrongdiagnosis.com and saw one cause for calf rash was HIV. From that point I started monitoring everything that went on in my body. Every little red spot, every tiny ache...everything was a sign of HIV in my mind.

Now I have a mildly running nose, sneeze 2-3 times a days, and have a bit of a dry cough. Do I tell myself I have a cold? No, I tell myself I have HIV. Before I even knew about the symptoms of ARS, I never paid attention to details. Now I do, and I think we all do it cause we're THAT afraid to be infected.

I can only imagine how many people have unprotected sex, have ars like symptoms 2 weeks later, and don't worry about it. And then I ask myself: Why do I need to worry? Why can't I be like that? And the only answer is: fear, I'm so afraid of having HIV that I just cannot block out the "what if's". And when I read for example...catching hiv through oral sex is 1 in 2500, it sounds to me that it's an almost 100% chance. Though I know the odds, you always wonder if you might be the exception. It's not the way to live your life.

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755829 tn?1246919225
Yeah anxiety can be a real life destroyer, looking at symptoms on the net is crazy, especially considering there are viruses out there like stomach bugs and things that mirror colds that are really unknown, symptom searching seems to always result in something major and quiet often the less likely options.
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518970 tn?1235870419
Thanks a million for sharing your thoughts, research, and personal observations. Your essay speaks volumes for all us worried souls who to seek to find answers for our strange "ailments".

You are absolute right with all that was articulated. Your post should be used as a disclaimer for those to read prior to seeking advice and/ or direction for HIV related concerns. Great job!

Stay thirst my friends.
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693413 tn?1233732272
I love that this forum is posted.  I see HPV and I freak out.  I find myself somehow bringing it up to see what others say about it, just to get reassurance.  Numbers and letters make my stomach drop too.  I have gotten better, but at one point I couldnt move from my bed.  I was SO convinced I had it and I never even had an exposure.  It is unbelievable what we can do to ourselves.  I always say to myself "just trust yourself, you are healthy and have no health issues, u would know by now"  I find it hard trusting myself, and I cannot understand why.  I do seek therapy for this.  She thinks that I have this obsession because I am afraid in the back of my mind I am going to somehow "destroy" myself or I am afraid I already have?  That statement can say alot.  I was in a horrible relationship when I got this anxiety and he was so mean and verbally abusive and I was always so afraid of what he wuld say next.  So when I got an infection, that turned out to be BV, I assumed the worse, maybe because thats how I use to think when he would get mad at me.  

Its crazy...But we are all here for eachother, we should start our own forum and get out of the HIV one and into the anxiety one!  
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Avatar universal
Read the following - posted on the anxiety forum:

I’d like to share my story with you. I’m not really sure whether I’m expecting help or maybe I’m just hoping this writing experience to be cathartic. There are many people in similar situations to me, but as always with this kind of thing, I’m convinced my case is “unique” or different.

Firstly, let me give you a bit of background. I have always been afraid of death (an intense fear). I’ve always been a hypochondriac. I have often experienced depersonalisation and derealisation, often in relation to the “death” issue. I am not religious, and so cannot find any solace in prayer.

I have a very low opinion of myself, I have no self-confidence and am struggling with my job / finances at the moment.

I have had one or two unsafe sexual exposures in my life. I have tested for HIV out to 22 months. All negative – but with very real ongoing symptoms since the exposure. Some can be attributed to stress / anxiety. Others cannot. Too much of a coincidence, I often think.

I struggle to accept my negative results. I look for every reason as to why I shouldn’t believe them. In the process I have convinced myself that I must have CVID (lack of antibodies) causing the frequent colds, oral thrush; I have then convinced myself that I am one of the serosilent who never develop antibodies. This leads to further depersonalisation. Fear. Anxiety.
My fears with this started with me being afraid of herpes. Then syphilis. Then HIV.

If you play the numbers game, I should be statistically in the clear – but what if I’m “the one” who is unlucky that the tests missed. I don’t trust my body.

And as with anything when one is incredibly worried, everywhere I look all I see are things related to HIV – articles, numbers, letters. A shudder instantly goes through my spine. It seems too much of a coincidence – almost like destiny.

I spend hours a day looking at all the HIV forums on the internet – looking for someone in a similar situation. Looking to convince myself one way or the other. Occasionally, I go through a few months of normality before the fear sets in again. The consequences are too dangerous to just “let it go”. I can't let it go for fear of it coming back to bite me.
Of course, I was unfaithful. I told my girlfriend. But when I look in to her eyes I can’t forgive myself. I don’t want to hurt her. I hate uncertainty.

I long to go back to my childhood (or even just a few years ago). When things were simple. When life was good. I don’t want to be here. Thinking about HIV, odds, statistics and symptoms. I want to move on. I am stuck in a nightmare of my own making.

As soon as I get some clarity of thought, I can relax somewhat, but I've read so much about testing and this disease that I know too much for my mind to rest fully. If it's not the fear of what it actually could be, it's the fear of what could have been. I seem to jump between the two.

I think my problems come from a number of things, such as fear of infecting a partner, my fear of death, hypochondria and other self esteem / anxiety issues. The combination of all of these has just blown me sideways.

I think this has moved beyond simple "guilt". It has been wth me so long now that it has almost made the disease a "reality".

My gf says that the key is forgiving myself. But I can't. I need assurances that people (and science?) don't seem to be able to give me. And when they do, I take them on board for around a week before I convince myself that just because they have said something, it doesn't change my situation or how I perceive it. Bizarrely, I keep thinking that getting alternative tests (not based on antibodies) will help, yet no doubt that if they returned negative (not that I can get them where I am anyway) then I still wouldn't believe them.

Today, I've been calculating odds like crazy – working out what the chances of different scenarios, the chances that I may not have this, the chances that she doesn't have it, the chances that the tests are correct etc. I like to try and look at the numbers to help me put things into perspective. I even try to visualise them (for example, imagining a packed football stadium full of people), but again, logic does not help.

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Avatar universal
Yes,it sounds very familiar.
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769494 tn?1235327075
Searching the internet for symptoms related to HIV is futile. All it does is fuel one's anxiety. Symptoms are never a reliable indicator when it comes to HIV testing. Most people on the forum have not had a risk in contracting HIV. Those with a risk cannot judge based on symptoms. Only doctors can diagnose swollen lymph nodes and other ailments. As Teak says taking the proper test(antibody test Elisa or approved FDA rapid test) at the proper time (13 weeks after exposure) is the only way to confirm one's HIV status.
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Avatar universal
Yes, it is like your mind is connecting everything with HIV. My GF told me in the car the other day that a colleague at work has been taken to the hospital with pneumonia.

My first thought was: Oh my god, he has PCP! He must be infected too.

Probably another related side effect from this obsession: starting to plan your own suicide, googling for "what is the least painfull way to commit suicide" and the list keeps on growing.

That's some weird sick thinking isn't it? I am starting to get over it, but it is not easy.

I never thought this would happen to me, really. Well educated, always careful and now this???

Anyway, the more I read now, the more I calm down. However I still need to get rid of my obsession and I have a feeling it is moving into the right direction. Nevertheless it will take some time to heal.

I needed to tell this to someone. Thank you for listening (reading).
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Avatar universal
Thank you for this! I really need something like this. I'm worse! I see a plate number that starts with P and I say "Oh, it's a sign! I'm positive" LOL! I go back to the net and start looking for a symptom again. Thanks again for this. Helps a lot.
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Avatar universal
100% AGREE on going alone!!    Thanks NurseGirl - great follow up.    

Hope everyone is looking at the poll results also - kind of says it all.
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480448 tn?1426948538
Excellent post, I truly hope it helps a lot of people...as this forum is overwhelmed daily with people that have become obsessed with HIV, and convinced they have it, despite either a NO risk factor or multiple neg test results, or frequently, BOTH and it is frustrating.  We recommend that people #1......LISTEN to what we have to say (have an open mind and be reasonable), #2 see their doctor for any "symptoms" they may have...and to get reassurance that they, indeed did not have a risk, or are conclusively negative, and #3...STOP searching the internet...it is the very worst thing you could do.  It would be like a person with a deadly fear of snakes sitting in a snake pit all day long.  Not really a great idea, right?

There is NEVER a substitution for "in-person" medical care.  You can read online alll day for whatever ails you (generally speaking...not speaking of just HIV)...but until you have been seen by a health care professional, you are only guessing.  And, that can lead to more trouble...as some people start "self-treating" based on info they read online.....how many posts have we read here...people poking and prodding at what they think are swollen lymph nodes....others scraping their tongue...when the new "mysterious" coating/film was there all along, they simply never had a reason to look before.  Just gets into dangerous territory, and of course makes the obssession worse.

I sincerely hope that people read this thread and take it to heart.  When it comes to HIV....it is NOT an easy virus to transmit.....actually it is QUITE difficult and requires basically a set of near perfect circumstances to allow for infection.  There is never EVER a reason to not protect yourself when it comes to sex outside of a mutually monogamous relationship where both parties KNOW each other's status.  HOWEVER, when a circumstance arises and a person feels they have had a risk...then getting a risk assessment on a site like this is a good idea.....but when you read the replies...believe them...and don't go into "panic" mode, as it will only lead to serious emotional/mental distress.  Do the right thing...see your doc, get tested at the recommended times....and when you receive your conclusive result...BELIEVE IT...BANK IT, and move on.

"concerned" (OP)...I just wanted to also mention something to you about your specific situation.....anything that happens at the doctor is CONFIDENTIAL, and that relates to your GF as well.  If you CHOOSE to share the info with her...or you choose to have her be a participant in your appt, then fine.  As long as you are having protected sex with her until you get your STD tests back (not HIV), then you are protecting her from any risk.  Personally, I would go to your GP appt alone.....it will keep you less stressed, more focused on the questions/concerns you want to share with him/her, without you worrying about what she may "hear"...or having to come up with some ridiculous excuse to salvage the moment b/c you haven't thought through how you are going to handle the situation. The time to do all of that certainly isn't at your physician's appt, in my opinion.  

I'm very happy for you that you managed to find some level of peace as you go through this process...and that you realize that indeed.....99.99999% of your "worries" were based on full panic mode, and the cycle of anxiety that was only worsened by being glued to your computer 24/7.

Best of luck.
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Avatar universal
man I couldn't have said it better. I had sex with a female 6 months ago unprotected and I'm still rattled. My GF now gets a zit and I freak out, its crazy
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693413 tn?1233732272
I like this post. This was me 110%- I was SO OBSESSED with thinking I had HIV.  It is just stained in my head now, I know I really don't, but I cant get it out of my head still.  My therapist said to me last week "lets face it, we would know by now if u had it"  LOL I have cut off my sex life and have not been active in almost 8 months!  Anxiety is a killer!  
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Avatar universal
Sounds very familiar!
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Avatar universal
Thanks!
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Avatar universal
General Practioner.   Doctor.    Sorry - hangover terminology from Australia
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Avatar universal
what's  "GP"
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