Newly Diagnosed...

[CallMeSid]

...I think!???

Prior to June 2007, my last HIV test was in the summer of 2006 and it was negative (as it had been for the prior 15 years).  In late June of 2007 when I went to my local anonymous testing center for my annual test, my fingerprick test produced such a faint line at the "T" mark on the dipstick that the counselor initially told me that I had tested negative and then when she looked again and saw the faint line, she wasn't sure.  Long story short, I went to my GP and had blood drawn for a confirmatory test (which he submitted under a false name because I am determined to keep this information out of my medical records as long as I can -- forever, if need be --and I paid cash).  The ELISA results (done in duplicate) came back as positive and the Western Blot result was labeled as "Positive" as well.  I got this news on July 5th.  The next week, we drew blood for CD4 results and VL.  They came back as 795 for the CD4's and an undetectable (<50) viral load.  I thought it was strange that my VL was undetectable since the absolute longest I could be infected is about 1 year.  (<-- If anybody has a comment on this point, I'm all ears.)  Anyway, I've done some reading since then and discovered that while the CDC guidelines would say that my WB results are "Positive", the American Red Cross guidelines would say that they are "Indeterminate" (my GP41 band was "Indeterminate" and not "Positive").  So, after doing some research and consulting online with a MD who answers questions on another web site, I'm going to have blood draw to do a "proviral HIV DNA" test in the next couple of weeks.  So, while there seems to be a small chance that I'm not infected, I'm thinking that I probably am.

I shared this news with a guy who had been a f***buddy when we had our first real "date".  We had planned but not yet had the date when I got the news.  I figured that this would be our first and last date.  I told him after we finished lunch and before we headed off to the movies when we were in a private space in the mall.  I was QUITE pleasantly surprised by his response -- he was not freaked out (and our activities had been rather low-risk for him anyway) and he thanked me for telling him and expressed concern for me and told me that he'd get tested and then said that we better get going or we'd miss our movie.  His fingerstick test was negative the next week and he'll go back and get tested in 3 months and then 6 months, but I think he's fine.  We're still going out and enjoying the process of getting to know each other (when I think about it, it brings tears to my eyes, but on our 3rd date, he said "I'm NOT going to NOT see you just because of this!" -- he's a good man).  I also told another f***buddy who I'd been seeing for about two years.  We had this conversation over the phone because the logistics were such that we wouldn't be seeing each other for a while and I wanted him to know what was up (especially since he has a partner).  Turns out he got tested back in March and was HIV-negative then and he'll go get tested again now.  Again, our activities were pretty low-risk for him.  I've sent him a follow-up e-mail (very discreetly worded of course) and left a voicemail message for him, but haven't heard back from him.    I'm thinking he may be mad at me because this news may have complicated his relationship with his partner.

So, other than these 2 guys who I felt I had to tell and my doctor and my doctor's assistant, I've only told one friend (a dear, dear, DEAR man who was once my therapist (years ago) but is now like a friend/favorite uncle/object of a schoolboy crush who lives 3,000 miles away from me).  He's been supportive (as I knew he would be) and he's knowledgeable about HIV and medicine (as am I due to my educational/work background and having lost friends to this disease back in the 1990's) but a part of me (based on NOTHING he's said, just my own feeling) thinks that I've really disappointed him by allowing myself to get in this situation.  For the time being, I've decided NOT to tell any other friends., including one of my best friends who is HIV+ himself.  Partly, I don't want to burden them, partly I just don't want to talk about it (especially since I have lingering questions about the accuracy of the diagnosis) and partly because I don't want to hear the questions along the lines of "How did this happen?"

Anyway, when I got this news about 7 weeks ago, I think I was in that weird "zone" that I've been in before when friends have been in crisis -- a very no-nonsense, matter-of-fact, let's-do-what-we-have-to-do sort of space where I sort of just push aside my emotions and pick up the pieces.  Now that the dust has mostly settled (still need to get this proviral DNA test done), I'm starting to get in touch with my very negative feelings about this diagnosis.  I forgot to mention that I just (last week) started a new graduate/professional program (I'm changing careers after 15 years of doing one thing, transitioning into a tangentially related field which has been one of my "maybe" goals for about 20 years).  I left my full-time job back in January and after a few months of taking a break am now (as of last week) a full-time student for the first time in about 10 years.  Back in July when I got those "positive" Elisa and WB results, I decided not to change my plans in terms of school, but today (it's been a bad day!) I've started wondering seriously if I'm not taking on too much?  I mean, part of me thinks that if this proviral DNA test comes back positive and confirms my diagnosis (in my mind), I may just drop out of school, sell the house and everything and climb aboard that "live fast, die [not so] young" train and drink, drug and chase dick for a couple of years before I decide that it's time to take a swan dive off of the Golden Gate Bridge.

(Yeah, I know, like Diamanda Galas said, "Brothers of blood and sisters of compassion, DO NOT GIVE UP THE FIGHT!")

Rambling...... sorry!  Sorry also if this should have been posted in the "Am I Infected?" forum.

[Matty the Damned]

Hey Sid,

It's always a bittersweet thing to welcome a new member. I'm sorry you had to join us, but I'm glad you found us all the same.

Your ELISA and WB results are evidence irrefutable of your status and so you have posted in the right forum.

I look forward to seeing you around.

Fond regards,

MtD

[Ann]

Hi Sid,

It is very possible that you are what's termed a "Long Term Non-Progressor" (LTNP for short) so don't throw your future away just yet - in fact, there's no reason to throw your future away regardless. You still do have a future and you're going to need that education to get a good job that will provide you with health insurance for the long-haul. And the only time you should be thinking of selling your house is if you're wanting to buy a new one. Don't make yourself destitute and homeless over this - you'll be needing your resources for a long time to come.

You might be interested in reading the HIV Testing Lesson and you also might want to run a forum search on both "LTNP" and "Long Term Non-Progressor". We have several LTNPs who are members and the subject gets discussed from time to time.

Please also read the Welcome threads that appear at the top of some forums - especially the one at the top of the Living With forum. You'll find information there to help you navigate the site as well as what conduct we expect from our members.

And as always, it's a bittersweet thing to say, but welcome to the forum.

Ann

[xyahka]

Hi Sid (taken from your nick)

I agree with everybody when they say you don't need to throw your live away. The most important is that you are aware of your status now and starting from this point it will allow you to look after yourself. Don't change your plans about future, just addapt them. I am also planning to go back to University in some time (is going to be a bit boring but it is something i want to do  ).

Perhaps there is lot going on your mind yet as it happened with all of us, but believe me this... there is no reason to give up. Hope to see you around and hear/read more about you while you keep on achieving your goals.

hugs,

Juan Carlos

[CallMeSid]

Thank you for the welcomes and the encouraging words.  Ann, thanks for bringing up the LTNP/elite controller possibility.  I'm keeping my fingers crossed on that front.  I'm due for another CD4/VL level in January -- we'll see how that goes.  (Note to self:  I need to ask my doctor why we didn't do the CD4 %. the first time around.)

I've had a rough weekend.  Very depressed.  Didn't do any of the assigned reading for grad school.  Just putzed around and didn't even crack a book.  On a certain level, I'm afraid that I'm just giving up.  I've got to pull it together.  I realize that this is going to sound stupid, but my cats are 12 and 13 years old and I really feel like I owe it to them to stick around and keep them in the lifestyle to which they've grown accustommed.  I hope I can do it...

[Ann]

Hi Sid,

January? You should be having labs done no less than every three months. In the first year of diagnosis many people have them done more often than that, so a better picture of what is going on can be formed.

You might want to seriously think about making an earlier appointment.

You're going to be around for quite some time to come, especially with those numbers. Just make sure you always look both ways before you cross the street! Get yourself a kitten - you're in this for the long-haul.

Hugs,
Ann
xxx

PS - no, it doesn't sound stupid to want to stick around for your catchildren. Many of us do that - our loved ones, including pets, keep us going.

[CallMeSid]

Ann,

Thanks for the additional input.  After I read your post, stating every 3 mos minimum for labs and possibly sooner since I'm recently dx'd, I did some internet searches regarding guidelines and it sounds like every 3 to 6 months is the suggested frequency.  A NEJM article suggested baseline CD4 and VL done twice about 4 weeks apart for a more robust measure of baseline.  My MD did not recommend this, whether this is because of his own clinical insight or oversight, I don't know.  I've previously (years ago) been vaccinated for Hep A and Hep B (and there was follow-up serology done to demonstrate I have protective antibodies for Hep B).  My MD made no mention of testing for syphilis, but I was tested for syphilis with the blood sample I gave to the local health department and that was negative/non-reactive. 

As I mentioned, an MD from another online site recommended the "proviral HIV DNA" test.  My MD was unaware of its existence.  After learning of it and investigating the cost, his advice to me was to not do it and just wait for the VL result in January.  I told him when we last spoke that I wanted the DNA test and would be in his office when he returns from vacation to get my blood drawn for it.  I've since decided that it might make more sense to just repeat the CD4 and VL at that point (and get the CD4 percentage done) as well as repeating the ELISAs and WBs (per the suggestions of the online doc).  Hell, as I type this, I think I'll just get the "proviral HIV DNA" test done as well.  I'm paying for this out-of-pocket, so this will start to add up, but I prefer to pay the cost rather than have this stuff in my medical chart.

Arrgh!  I think I'm going to stop talking about tests and frequencies because it seems there are lots of opinions about.  I'd like to think I can go with what my doctor says, but in general I'm not the most trusting person.  On the one hand, I think it's good to hear input from others about "to do's" but when there are conflicting messages it can get to be a bit too much...

Babbling again and not making a lot of sense.....Lots on my mind...

[Ann]

Sid,

It seems to me (after reading so many people's stories on this website since 2001) that most newly diagnosed people do indeed do the four week base-line testing. Is the doctor you've been seeing an hiv specialist, or at least an Infectious Disease specialist? Because if he isn't, you might want to start looking for one. Hiv is a fast-changing field and you need a specialist. Also, if you  see a specialist, you can avoid mention of hiv on your GP or PCP's chart.

If you're worried about your insurance coverage - you might well be worrying over nothing, but I'm in the UK and not the right person to advise you on that aspect. There have been many threads on this subject in the forums - try the search page.

Of the suggestions you've mentioned, I like the VL, CD4 and CD4% - along with a repeat of the ELISA and WB - one the best. As your last VL and CD4 was done in mid-July, now would be a good time to set this up.

Personally, I think the sooner you get another set of results the better. One result can only tell you so much and I think more information may help you settle - especially if you do turn out to be a LTNP.

Have you browsed through the Lessons yet? They're a good place to start - although you don't need to learn it all at once. You and your doctor need to form a partnership and it helps if you are as knowledgeable as you can be.

Ann

[CallMeSid]

Hi, Ann.

My MD is a gay GP with a large gay and large HIV patient population.  I don't think he has actual ID or HIV credentials, but is more (much more?) knowledgeable than your average GP (though likely less so than an AAHIVM certified ID specialist).  My primary (by far) goal at this point is to protect my confidentiality/anonymity regarding this infection.  For example, I gave the local health department a fake name, address, social security number, birthdate, everything.  When I got my test results, the NP told me that I "had to" meet with the "Disease Intervention Specialist".  I begged off as pressed for time and she said they would seek me out.  I thought (a) "Good luck with that!" and (b) "Have to?  All I *HAVE TO* do is stay queer and die".  Fortunately, my issue currently is along the lines of "am I really, really infected" and NOT "do i need meds and if so what kind".

Though it may frustrate/annoy me and cause additional work on my end, I'd much prefer to stay with my current MD than meet with an HIV/ID specialist who I don't know and therefore don't trust.  Insurance is an issue as I'm NOT about to use my student insurance to cover HIV-related care.  I won't bore you with the details, but suffice it to say that I've already made the mistake of using the insurance administered by a prior employer (a university) and learned the hard way that they, in my opinion, VIOLATED my confidentiality by disclosing a different stigmatized diagnosis to my employer, resulting in my eventual discharge.  They may have been within the letter of the law -- but I won't know for sure because I can't find a legal advocate who I can afford who will take on my case -- but even so, it was just WRONG.  That experience has contributed to my already well-earned mistrust of people I don't know...

I'm probably not going to post for a few days (minimum) because I've got too much to do and need to stop thinking about this a bit....  There's really no urgency to do anything at this point, just my desire for some concrete answers.  But "want what you have, don't want what you don't have" as the Buddhists say.

[Ann]

Sid,

It's totally understandable that you don't want to change doctors - and it doesn't sound as though you need to.

It would still be a good idea to get another set of baseline labs - if nothing else to make certain that you actually are positive. With that undetectable viral load, it's well worth getting another confirmation.

And if you do turn out to be positive with those numbers, then you can safely "chill" on the subject for a few months.

Ann

[milker]

Hey Sid,

January is way too far away. You must get regular tests to see your progression. That you may be a LNTP is great, and you may help by enrolling in elite studies. I know that drawing blood is not what you want to do but you may help the rest of the community understand how to fight this virus.

Your doctor may be very optimistic but being newly diagnosed with those numbers I have a hard time understanding why he is not either putting you on a study or checking that lab results are correct. It seems strange to me that a doctor would make a decision that "wow you're an LNTP! GREAT!" after just one or two tests.

May I suggest a second opinion?

Milker.

[CallMeSid]

Milker,

With my current numbers, the risk of any sort of "progression" between July (when the baseline tests were done) and January is essentially zero.  If I get the CD4 and VL tests repeated, say, every month, there would be the possibility of observing some fluctuation, but it's questionable that those fluctuations would be clinically significant.  At this point, the only reasons I see for repeating the baseline tests is to see if I do have a detectable VL (which would then convince me that I am truly HIV+).  A review of my earlier postings will reveal why I have a question about that.

Also, to clarify, my doctor did NOT state that he thinks I might be a "LTNP".  (At this point, using the term "LTNP" would not be accurate for me, iI think -- possible elite controller might make more sense.)  Ann mentioned that possibility that I might be given my semi-puzzling undetectable VL so soon after (supposedly) seroconverting.  My doctor thinks that "at some point" a VL result will be above the lower bound of detectability and I'll then have the proof that I am HIV+.  (<-- I really don't like his assumption that I can just hang out and wait to get this confirmation of my infection.)

I'm going to have the CD4 and VL tests done again next week (which will be about 8 weeks after the 1st set).  If the VL remains < 50, then I may repeat the ELISAs and WB (as suggested by the online doc I consulted).  If that WB is still indeterminate, I think I'll do the proviral HIV DNA test.  We'll see...

Sid

[Ann]

Sid,

That sounds like a good plan of action to me.

And fingers crossed that this has all simply been a bit of a screw-up and you're not really positive. Keep us posted!

Good luck,
Ann