HIV Anxiety Support User Group
I need some serious help!!!!
About This Group:

This support group is for those who are suffering from stress or anxiety associated with uncertain HIV status. HIV anxiety is extremely isolating for those who are going through it, as it is often very difficult to discuss with friends and family members. This group is provided for sufferers of HIV anxiety to discuss their fears in a supportive environment. Those with anxiety over non-HIV STDs are also welcome. For personal advice concerning HIV risk, testing, and prevention, please post in the HIV Prevention Community.

Founded by joggen on October 4, 2009
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I need some serious help!!!!

Hi Guys,

I have previously posted to the HIV prevention forum and someone stated that I should seek therapy. I tried to do so but it is just not helping much at all. I have had a pretty promiscuous life in my opinion. I have always asked my partners to wear a condom...no exception. I have been sexually active for eight years and had one unprotected encounter and one encounter with a condom break (no ejaculation). I recently thought to myself that it was rather irresponsible of me not to be getting tested. I recently went to go get three HIV test just to be sure. One was a rapid oral test and two were finger prick test (clearview complete). All three were negative, I thought that I was going to be okay but now I am still unsure of my status.

People on other forums are stating that I am suffering from anxiety....but I have a good reason to. I have read on several forums including medhelp HIV prevention,  where people get rapid HIV test and think that everything is all good and then they go take an ELISA test or donate blood and they test positive. I understand that my situation may not be like someone else's but there mere fact that it can happen scares the life out of me literally. Since reading these thing, I have not been able to function. I have lost almost 20 pounds this month alone, been hospitalized for a panic attack, had symptoms of a heart attack, developed some type of ringing in my ear and often can not sleep at night. Everyone keeps saying to go get an ELISA and it will be negative....yeah like the two individuals I have read about in these forums that did just that and TESTED POSITIVE. One of the guys even had I believe what you call a PCR or RNA test and that came back positive but had repeated negative rapid test. I just do not understand how the FDA or the CDC can even deem these test just as accurate as lab based test when things like this happen and if you bring these things up on forums....no one wants to discuss everyone just brushes off like that person is crazy or something.

At this point I do not know what to do, I am afraid that if I go and get the lab test....I am going to hear something I do not want to hear. I am afraid not to go get the test because I don't want to die a horrible death and I am tired of being this way. I do not want to hurt myself but it is getting to that point. If I were to take the test and it turned out to be positive, I would just end my life anyway. I understand that HIV if not a death sentence. But where I stand....it is. I am not an individual that believes in living a wonderful life with HIV and neither does my family. I once had a family member who had HIV and you would have thought he was the devil himself. No one wanted to be around him and no one talked to him. I was much younger then and did not understand. Unfortunately my family is still like this today.

When I decided to become sexually active it was never really enjoyable for me. I did it because I was in a relationship and I was trying to make my significant other happy. I never wanted to  have sex without a condom not even with the man I was SUPPOSED to marry. The incident when the condom broke, I ended up pregnant and yes I did keep my child but that started my HIV fear all over again. If I got pregnant from a condom break with NO ejaculation...then maybe I could still get HIV even with a condom. I also fear that maybe my partners weren't always honest about keeping the condom on or if it broke or not. I am just a mess right not and I wish that this would all end. I am sorry that this post is so long, I just need some help.
11 Comments
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1629919_tn?1407244906
Hiya. Well im going to make this quite short and simple,so their is no misunderstanding.

The odds of you meeting somone with hiv, less than 1%. The chance of getting hiv from the exposures you mention, less than 1%. The chance of a test giving a false negative, less than ·5%. The chances all 3 being wrong well at a guess 0.00001%.

Now of course if you really wont or have the time to do the maths you can see their is a possiblilty, but then thats about on par with winning the lottery 3 weeks in the row with numbers 1 - 6.

Its not possible to comment about the net and so called results because people make all kinds of rubbish up to scare other people, infact i have seen many first hand. So i would ignore those as none credible quotes.

Honestly, you are negative and to spend another second on this is not logical or healthy.
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Avatar_m_tn
Haven't you heard about false positive results? In all probability that is what happened in the posts that you read.

HIV tests can have a higher false positive rate than the true prevalence of infection (see below):

http://en.wikipedia.org/wiki/False_positive_paradox

The other reason why people can have different results on different tests is that they have tested recently (within a few weeks) after an exposure and are seroconverting.

The fact that people have tested positive on an ELISA or PCR test and negative on a rapid test probably means that they just had a false positive. There is no such thing as a false negative on a rapid test after the window period.
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Avatar_f_tn
Thank you for the math breakdown of my chances with meeting someone with HIV. Unfortunately, in the city I live in....it is much more common. I live is Washington, DC where we are supposed to have the highest HIV rate is the United States even though most people I have been friends with get tested way more often than I do and have all tested negative. So either, someone is fabricating the HIV rate hear in DC or everyone that test negative really isn't negative. I do understand that people put all sorts of things on the internet to scare people....I do not doubt this one bit. But, I do not believe that someone who is sincerely getting tested and later on finds out that their results are not what they were initially told would not lie nor would they go and donate blood knowing that you are tested for HIV when donating blood.  The post that I read,  that is exactly what happened. This young lady was not trying to scare anyone, she just wanted to know how in hell she tested negative with a "rapid HIV test", goes to donate blood and is being told that she tested positive, finally goes to her doctor and is diagnosed as being HIV positive and all of this after a four years exposure. The only thing that she could possibly be lying about is the date of her exposure but I seriously doubt  that she was. One thing  I have learned by reading numerous HIV forums is that people that find out they are HIV positive usually just accept the results and move on. They may be pissed, hurt, sad, confused but they do not go on some denial rampage. On the other hand, someone that has been told "you are HIV negative", who tested outside the window period and with a FDA approved test and then test positive after donating blood.....now that's a person that would go on a denial rampage. Who could blame them, I would too. As far as spending another second thinking about this....you are absolutely right, it is both illogical and unhealthy; but how can I not stop thinking about it when something like this can happen. At this point, I feel as though I can not donate blood, I can't have another child, I can't get married and I can't even make plans for my future all because their is a possibility that I can go take an ELISA test and it come back positive not saying that is will. I pray to GOD that even though I have been reckless in my eye sight that the rapid test was true and accurate. That I really don't have HIV, that GOD had mercy on me and that this is just a lesson that I need learn. I hope that this is what this is because in that case I have truly learned my lesson and honestly will never have sex again. You are saying that the chances of me contracting HIV from the exposures that I mentioned are less than 1%. Okay, like I said....I consider every single time  that I have had sex to be an exposure because condoms are not 100% and even though I said use a condom and saw them put the condom on does not mean that they kept it on or if it broke that they would tell. I say  because when I got pregnant, I had no idea the condom broke until my partner told me the next day but I am sure he knew that it broke the moment it happened. So, that why I am so scared, if he didn't care enough to say "hey the condom broke, let me put on another one"...how am I so sure that anybody else I have been with would not do the same thing. I said the same thing "that there is no way three  can be wrong" but according to places that have used rapid test in private studies...rapid test can be performed wrong. I am not sure how you can mess up picking someone's finger or swabbing their gums but these people in these studies have in fact found that is can be done.
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Avatar_f_tn
@ Joggen,

Yes, I have heard of false positives but usually when a false positive occurs, the person is not diagnosed as being HIV positive. I used that young ladies post as an example because she was diagnosed by her doctor as being HIV positive after having two negative rapid test. Now I am not a medical professional, but from what I understand doctors consider ELISA test the standard gold and to be more accurate than any rapid test again...not my words but the words of many studies from many HIV specialist and doctors that I have read. I even called a lab the other day and asked them about the accuracy of the rapid test and this women said and I quote "I have been performing HIV testing for over 15 years and the ELISA test trumps the result of any rapid test" and she goes on to explain why, she said "when you do an ELISA test, a larger sample of blood is being tested which makes the antibodies easier to detect, when performing an ELISA there are trained professionals to run positive/negative controls and to ensure the equipment is running correctly, rapid test can and have been know to be faulty, the individuals that perform these rapid test are usually not properly trained and often do not follow protocol.....and the list goes on. I was floored at the reasons this women gave why people should not trust rapid test, especially the one about the amount of blood. I mean, does that in fact matter? Also, when d...doesn't doing a PCR test doesn't that look for the virus itself...so if that comes back positive doesn't that mean that the actual virus was detected. I do not understand how a test that was designed to look for the HIV virus itself can be a false positive if it found what it was designed to look for? Anyway, like I stated, I am just really scared at this point. I said on my HIV prevention post and I will state it again, I do not understand rapid test and how they are similar to ELISA test and no one has yet provided and explanation.
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1629919_tn?1407244906
Due to the lack of paragraphs its really hard to follow your posts and more so the rambling than having a particular point you wish to make.

The bits i picked up. Rapid tests are 99.9% acurate. They are fda approved and used by leading hiv experts.  I dont at all some of what you read and quite frankley im stunned you even belive it or more even bother to mention it, as it has no credible point at all and thats about a  woman tested negative then 4 years later she is positive?

So lets forget all the reasons to why you dont belive logic and your conviction  to find anything to back up your paranoia. Although as you said you have spent many hours reading about hiv tests etc, you must have missed the part about why your tests prove you dont have hiv.

So this is the only part i need you to answer, as logic and facts dont help with your ocd.

WHAT will convince YOU about your hiv status? Simple question and just need a simple answer.

Cheers
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Avatar_m_tn
You seem smart enough to be able to distinguish between reliable and unreliable sources of information, so I really don't understand why you are letting one or two posts in an internet forum ruin your life. You don't know if this person(s) is disregarding or not remembering other exposures they have had or just trolling. Do you really believe everything that you read on the internet? These tests were approved by scientific studies with hundreds of people. Do you think if you showed these posts to the FDA that they would take the tests off the market? You don't seem like the type of person to fall for a Nigerian email scam, but what you are doing requires a similar lack of critical thinking. I think you CAN distinguish good and bad sources of info, but your anxiety is interfering with that capability and making you latch onto things that fuel it as Apollo said.

Same thing with taking advice about the reliability of rapid tests from a technician. Did you know that a rapid test IS a type of ELISA test? The basic principles of the tests and the reagents are exactly the same. The rapid tests have controls so the amount of blood and technician mistakes are controlled for. The major difference is that with a traditional ELISA, an instrument produces a readout.

If you need an instrument to tell you your HIV status, then just take a traditional blood test. You can go to your county health department and put this behind you for good. As you yourself said, people who are diagnosed with HIV go on with their lives. They MOVE ON. Even if your paranoid fears somehow came true- three FDA-approved rapid tests gave you the wrong answer- it would be better than the way things are right now.
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Avatar_f_tn
I am very well capable of distinguishing reliable and unreliable sources of information. No, I am not the type that would fall for the Nigerian e-mail scam. I do believe everything that I read on the Internet but I do believe things when come from sources that have experience and work in a particular field. The question that I was asking as far as the blood amount is, does an ELISA and the rapid test use the same amount of blood, if so...why would the technician make a big deal about the amount being tested. As far as you comment about "if your paranoid fears somehow came true- three FDA-approved rapid tests gave you the wrong answer- it would be better than the way things are right now." That makes me fear the accuracy of the rapid test even more. If they were so accurate, you wouldn't make a comment like that. When something is accurate...people do not use terms like "even if". When something is accurate....that's it, that's all end of story....nothing will change. If my paranoid fears somehow came true....that would not make things better, it would make things worst. I would not go....I would decide to end my life. As I stated before...to me HIV is a death sentence. There would be countries I couldn't travel to, I would not be able to get married, have more children, tell my family, if anyone found out, people would discriminate against me and my daughter, my daughter would never have any friends, people would make fun of her. Does that sound any better to you. I am just praying to God that these test are accurate because of those reasons.
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1629919_tn?1407244906
So you missed my post that rapid tests are 99.9% acurate then? Oh thats the same as any hiv test, they are all the same.

Your comment on the hiv forum ( I would kill myself ) whilst sad, tragic and disgusting it indicates that you need help from somone who deals with mental health issues. 8 years you have wasted on this but its how you deal with other posts, by deflection and thoughts of death. I dont belive you are able to resolve this yourself, proved by 8 pointless years of worry, so

I urge you to seek urgent help for you mental health.
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Avatar_m_tn
You've already been told rapid tests ARE ELISA tests by Teak and myself and I told you that the reagents are similar. They both use antigens and use colorimetric reagents to give a readout, They simply work on a different scale, the rapid tests giving a visual readout and the traditional blood tests being measured by an instrument, The technician gave you false information- while rapid tests are purposely designed to be used with smaller amounts of blood, that DOES NOT affect the accuracy. I don't know why the technician told you that but it is wrong.

I said "even if" not because I believe there is a realistic chance that you have HIV (I DON'T), but because you've been ignoring everything that you've been told on this thread and your other thread in the HIV prevention forum, and arguing with the advice you are receiving by backing up your theories with bad information that you have become fixated on, and it seemed like the only way that you will be convinced that you don't have HIV is to take a traditional blood test. If you can truly get over this without taking a traditional blood test, then please try to ACCEPT what people are telling you here about the accuracy of the rapid blood tests rather then trying to read hidden messages into our statements or argue incorrect theories.

I also have to concur with Apollo- the fact that you are expressing thoughts of suicide indicates the issue is most likely a mental health issue- depression with anxiety - that is making you focus on information that feeds your fears and not think rationally. If you were thinking rationally and objectively  about this, you would realize that to question the results of THREE FDA approved tests, the most accurate tests every designed in medicine, is quite absurd.

You said therapy doesn't seem to be working, but have you consulted a psychiatrist?  If you have a chemical imbalance then therapy alone is unlikely to work. If you are suicidal then you definitely need to consult with a psychiatrist.
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Avatar_m_tn
Okay, I found a link to an article from the CDC on rapid tests that I hope will be helpful. It explains rapid tests better than I can.

Here is a DIRECT quote from the article:

Rapid HIV Antibody Test Performance and
Interpretation of Test Results

Like conventional EIAs, rapid HIV tests are screening
tests. If performed correctly, they detect HIV antibodies
with sensitivities similar to currently available EIAs
[10,22,24–29] (Table 1). A negative rapid HIV test result
requires no further confirmatory testing.

Here is the link to the article:

http://www.cdc.gov/hiv/topics/testing/resources/journal_article/pdf/rapid_review.pdf

If you still can't believe us that your rapid tests are accurate, then I advise you to post in the Expert forum. Your doctor gave you bad information, so maybe you need to hear the correct information from another doctor.

http://www.medhelp.org/forums/HIV---Prevention/show/117

If you can't believe the article, and/or one of this site's Doctors, then consult with a psychiatrist.

That is all I am going to say on this thread- I think I've done all I can here.
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Avatar_m_tn
I understand what you're going trough right now, since I am in an similar phase. I was also "diagnosed" on various forums as mentally ill and I was given the advice to search for professional help.

You have to understand that those people here answer those questions on a
regular basis, and seriously if I was one of them - I would be probably p*** off after several
weeks and just quit.

I did the same you did: For over one month, I spent each day 3-5 hours on research, studies,
reading official papers etc. I lost weight (4kg) and I started to feel constantly ill. I didn't meet
with my friends and I became a prisoner in my own body. Some would think I am crazy - but I am not. I have a very high-level job, I am educated and I am the guy "everyone likes". And I always
take responsibility in my actions, and that's why I always used condoms, at least for penetrative sex.

The problem with all those forums is that the people here give you their opinion based on a) official documents/studies and b) their personal experience with "cases" on those forums. No-one can say that they are right in 100% in everything, but as I can see they are just as reliable in their risk-assessment as an HIV test, e.g. over 99%. I really admire them for the work they do.

Yet there is a little problem. Documented cases. I am an undocumented case. You are too. Let's say the worst happens, and one of us got HIV trough a "no-risk" scenario (for example unpr. oral sex). If I was them, I would never believe that guy, that states on a forum that he always had protected sex but got infected. Just as my doctor: When he saw me a few days ago for my blood test, he didn't believe me that I had always protected sex, although I told him a couple of times. We are undocumented cases, and we can't prove anything. That is the only thing that makes me anxious, and it's very logical & simple to understand why. All we can hope for is to be one of those 99,99% of people that are lucky.

Yet it makes me mad to see all those people posting here with their concerns, because I can understand them. So much money is being spend on HIV/AIDS yet only a handful of useful studies are coming out each 5 years. Only several studies concerning oral sex after 1990. THIS is what makes us "normal" (mentally healthy) people anxious. Let me remind everyone, that this is the biggest medical spending done ever - now for over 30 years.

Do yourself a favor and don't dig deeper. There is a lot of controversial information out there that will make you nuts at some point.

There is some advice though for your case: Those rapid tests you took tend to give more false-positives then false-negatives, it's just the way they work. Think logically: Better to have a false positive, then a false negative. The ELISA blood-test works exactly the same way - it gives false positives, but if you're negative you can be absolutely sure, especially if you do a duo that searches for the P24 antigen too.

I had almost the same case like you: I took three different home-tests (1x oral, 2x blood) and they came out negative. Then I convinced myself that I did something wrong, or that I can't trust the results and I went for a regular blood-test. It was negative, too. I would lie to you if I say that I feel no anxiety now - I do. But it's much better to handle with a negative blood-test, trust me.

You will be fine! But you need to take action, now. Do the test. You have no idea what a relief it is when you get your first negative "official" result.












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