Time to ask for help, and let it all out

[TonyDewitt]

Andy,

I'd like to once again ask you for your help please - you helped me immensely two years ago, along with Ann. At that time, I was perplexed by the disparity with the "conclusiveness" of antibody testing times (4 weeks vs 6 weeks vs 3 months vs 6 months), and you provided me with a clear, logical methodology that I could follow to determine if I was conclusively 100% infected or not. That methodology worked out great, not only because I was negative, but also because your method stopped me from having to keep worrying "what if it's not conclusive yet, should I test longer or more?", so thank you again. As bizarre as it might sound, it seems that nowadays vs two years ago testing advice has gotten exponentially more complicated (I would have expected it to get simpler or stay the same) and that your methodology is more challenged now than ever (I'd expect it to be a more accepted protocol).

Since two years ago, I really thought I had my head on right, was strong enough to say no to dangerous things (and did so many times). However, after a bad spell of many people dumping on me, I found myself in the worst possible situation, and participated in it, due to my emotional and physical fatigue. Because of that participation, I am back in illness hell.

Before I elaborate on my current problem, I want to say publicly that I owe Ann and her friends from the Living With forum an apology, because being so sick this time around, I was participating in that forum presuming that I am an infected. While I was always kind and helpful to the members on that forum, Ann's right that it was wrong to of me to participate in that forum without knowing for sure that I am infected. So, for what it's worth, I'm sorry - that forum has many wonderful and intelligent people, and they gave me strength to cope - I would do anything to repay them for that. Ironically, Ann is the reason for me getting tested (negative at day 87), because of her asking about my status, I couldn't wait any longer.

In the early hours of November 7th, I had unprotected sex with a guy who assured me that he was negative and gets tested regularly. Within a few days I was already feeling ill (severe body aches), so I asked that he get tested. This is when I found out that he hadn't been tested in nine months, and wasn't interested in getting tested for me. Coincidentally, he said that he needed to go to the hospital because he had developed a facial rash so bad that it affected his eyes. Of course hearing this I became really worried, thinking that this was an HIV rash, therefore this guy has HIV, and therefore I do too. Because of the threat that the rash had on his eyes, he spent a few days in the hospital until the rash was gotten under control. He claims that the doctor told him that the rash (Atopic Dermatitis) was not an HIV rash, and that the hospital tested him for HIV (negative). I say "claims" because he could be lying to me about his negative test results (due to fear of criminalization, etc), which relates to my later point (testing a person versus needing to know the partner's history).

I found a local infectious disease specialist, told her about my concerns, and she gave me a RNA PCR test at the 3 week mark (undetectable < 20), along with tests for all of the Hepatitis alphabet and Syphilis (also negative). When I pressed her as to how to make the HIV test results conclusive, she said that I should repeat the RNA test at the two month mark, which I did (undetectable < 20, and she repeated the Hep / Syph tests as well - negative). So at that point she referred me to a psychologist regarding my HIV concerns, while prescribing for me Doxycylcine for her suspicion that I have tick borne illness (Lyme & Rocky Mountain Spotted Fever).

In the meantime, I consulted the other forums, both reading previous postings and submitting my own. One forum whose rubber stamp response is "12 week antibody test is conclusive" replied to me that my doctor's RNA PCR tests are not conclusive (which contradicts the doctor who gave me those tests). When I posed the question "Can you see how this disparity between testing approaches could drive the patient insane?", my account was "warned", although I don't see the problem with asking that seemingly logical question relating to stress brought on by testing disparities. When other people expressed agreement with me, the discussion thread was closed (thankfully, it wasn't a forum on this site). Apparently the testing disparity question is a volatile one.

When I went to another forum, one gay doctor there told a heterosexual female patient who had the same testing as me (2 RNA tests at 3 & 9 weeks, one antibody test at 3 months, all negative) that she required no more testing, but recommended (much to my shock) six month testing for gay & bisexual men, or for "exposure to known HIV+ individuals". Does this mean that testing requirements are different even though we are all human beings testing for possible infection with the same virus? Until that shock, I had firmly believed that all of this doctor's advice was firmly based on his seemingly golden three month antibody testing rule. Does the aforementioned woman now need to know if her one time male sex partner has had MSM activity so her testing protocol can be modified based on his sexuality? Does she need to have her one time male sex partner tested so her testing protocol can be modified because of his HIV status? Are we testing people uniformly who have unprotected sex, or do we have different rules for men who have sex with men? Even better stated, are we using the test to scientifically test for biological markers at known time intervals for a given patient, or are we using the test for the statistical optimism that most people aren't infected, unless they're MSM, or having sex with a known positive person? I hope that you can see my dismay here - if the test isn't adequate for any type of unprotected sex, regardless of the patient's sexuality, or partner's sexuality or status, then it appears like we're just playing a numbers game, instead of medically testing for a virus - hopefully that is not what HIV testing really is in the year 2012. My MOST IMPORTANT question to you is has anyone who has tested negative at 3 months ever came back positive afterwards? I'm not a drug user, not a cancer patient, on no medications, no organ transplants, etc. Is that where the "97 percent test positive at 3 months" comes from - those categories I mentioned? I'm looking for 100 percent conclusiveness - does testing at 87 days do that for me?

The same doctor chastised one poster who had a 84 day negative test, saying "you're 6 days short of 90 days, so I can't say that you are conclusively negative". So he's also declaring the "12 weeks is conclusive" rubber stamp forum to be also wrong, since 84 days = 12 weeks - again very dismaying. A question at this point is that the typical excuse for these "not enough time" remarks is that some tests are accused of being older, so therefore more time needs to be added - is the testing where Ann is in Europe newer / better than in the United States? Would I have to worry in the year 2012 that HIV tests that I receive in the USA are old / inferior? Does that poster need to worry that the 84 day results aren't conclusive? Do I need to worry that my 87 day results aren't conclusive? If so, I will gladly take the 90 day test, I just want parity and sanity here please. Should I ask the testing center what generation of test or brand I took? Also, you probably have already heard this one - are the blood finger prick antibody tests EQUALLY accurate to traditional venipuncture (needle blood draw) antibody tests? Some allege that they are two percent less (95%) accurate, so why are they even being used?

I know this is much to ask of you - you have been the clearest person on this issue, so I am hoping that you will once again show me the path to sanity please. If my post testing issues don't resolve, I may need to become an actual patient of yours.

Thanks very much, I owe you big time.

[RapidRod]

Please do not start a new thread every time you have another question or thought - regardless if you think your questions are related to each other or not. It helps us to help you when you keep all your thoughts or questions in one thread and it helps other readers to follow the discussion. Additional threads will be merged.

If you cannot find your thread, click on the "Show own posts" link in the left-hand column of any forum page, under your name.

[TonyDewitt]

Sorry - I honestly was not aware of the protocol for posting.

[TonyDewitt]

PS: I believe that I've miscounted the days - early Monday am would have been 13 weeks (91 days), and I tested Friday afternoon, so it's more like 88 days.

[Ann]

Tony,

With those two negative RNA results, a couple days aren't going to make one bit of difference to your antibody testing. You do not have hiv.

You're going to have to get over the fact that there are no short-cuts to hiv testing. Regardless of what your RNA test results were, they still would have had to be confirmed with antibody testing. That's right, a positive result would also have had to been confirmed with not only a positive antibody, but a positive Western Blot as well.

Conversely, any negative RNA must also be confirmed with a negative antibody test at the appropriate time of three months.

Whether this three months is said to be twelve weeks or thirteen weeks is purely academic. If you count three months as being three four week periods, it's twelve. This makes for thirteen months in the year, but is the most widely used calculation in Europe. If you want to use the twelve months in a year method, then three months are thirteen weeks. As I said, it's academic and to worry about the difference is to split hairs.

The same tests are used in Europe and the US. The ones used in Europe aren't better or newer, they're the same.

What some doctors claim about the testing window period being different depending on your activities is just plain wrong. Gay men create antibodies at the same rate as anyone else and to say otherwise is just another form of stigma and discrimination. Don't buy into it.

Sorry - I honestly was not aware of the protocol for posting.

Bollocks. You've been coming here for four and a half years - it's not our fault that you never bothered to read our posting rules in all that time. They're easy to find - what did you think all those Welcome Threads are all about?

You were also recently given a 28 day time out and your PM privilege was removed for posting in forums meant for positive people only while secretly PMing poz members to ask transmission and testing questions. I should have remembered this, but hiv sometimes makes my short-term memory wonky. Warning to others reading this - I will always get you in the end if you're ignoring our rules.

I'm permanently banning you from these forums. Not only have you ignored our posting rules for far too long now, but you were also given a chance and ignored that too. I should have permanently banned you in January when you first came to my attention.

I suggest you find a therapist so you can work out why you continue to put yourself at risk and put a stop to it. Wanting to be a part of a group on the internet is not a good enough reason, no matter how much you think of us. Wise up already!

Ann