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2 weeks since diagnosis, thought I'd say hello

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lostinthecorn:
Hello!

I've been lurking about on the forums for a couple of weeks now... figured it's about time I say hi :)

I was diagnosed on 9/21/12, I had gone in for my first physical in about 20 years the previous week and had fallen out of my HIV testing schedule since my last LTR.  Hadn't gone in for anything specific really other than this spot on my leg that looked like varicose veins or something and a sort of weird feeling in the side of my face.   Complete blood count came back with a low white count (2,700) - so the doc invited me back for HIV and HCV tests.  My insurance company sort of gave up the results the Monday prior to 9/21 by listing out 2 "Medical Services" - they don't spell out HIV test - but one was about 4x the cost of the other and I knew at that point the antibody test was positive and the second test was western blot to confirm.  The good news I got on 9/21?  No HepC.  At least I had sort of prepped myself for the results, so yeah I was freaking out a bit but I didn't completely lose it... still have a good cry every couple of days though.

The doctor had already prepped the HIV clinic here so I had an appointment on 9/25 where I had another general physical then about 8 vials of blood drawn for CD4/VL, checking for syph, Ghonnorea, chlamydia, and so forth as well as another metabolic panel.  Got a call 2 days later asking me to come in... my CD4 count was only 49(!) (my CD4% was 13.7 which confused them a bit) so they were starting me on Bactrim, Fluconazole, and asked if I'd like to start an ARV treatment even though the resistance test results wouldn't be back for another 2 weeks or so... of course I did.  Norvir/Prezista/Truvada.

Since then I've had the fairly standard bactrim reaction, I've already been experiencing some IRIS-type symptoms, and the foggy head side effects from the drugs.  Been back to the clinic 2 times just to make sure nothing serious was going on, the first follow up i got my viral load - almost 1.2M!  And I have HepB, which the Truvada should deal with.  The worst was when I tried taking benadryl on top of adavan last weekend, woke up and didn't know where I was and could barely walk to the bathroom.  Much better since I dropped the adavan and benadryl and the itching isn't awful.  The last 3 days i've felt pretty functional finally, it'll be 2 weeks since starting ARV.  The only lingering issue is that I feel super bloated after eating sometimes, particularly as dosing time approaches.

Next appointment is for metabolic panel on Friday, wondering if I should even ask about checking CD4/VL at that point or wait another week or 2?  I'm curious because the varicose vein type 'bruise' on my leg has faded significantly already, so i have to wonder what other things have improved!

Hope all of you reading are doing well, and those of you who may not be... speak up and say hi - you're not alone.

tednlou2:
Welcome to the forums.  I know, that always sounds strange.  Man, you've been hit with a lot of things at once.  How are you doing today?  How are you doing mentally?  I would have never figured out the billing and that meant a positive test and doing a western blot.  Hell, I didn't know what a western blot was at the time. 

It seems like you already have a lot of knowledge about the virus.  I wish you all the best on treating the Hep B.  Well, with everything.  Keep in touch.

lostinthecorn:
thanks tednlou2 - it sure sounds like i've been hit with a lot at once, but I know there are others that have gone through far worse!

I'm doing pretty great today, I woke up naturally at about 10:30am (vs 2:30pm last week)... my head is pretty clear though I'm not sure i'd be safe to drive anywhere yet, maybe in a few more days.

Nobody has said much about the HepB at the clinic, other than one of the drugs in Truvada addresses it.  My metabolic numbers look fine so i don't think there's much if any indication of liver damage.  Albumin was 4.0 and Bilirubin was .9, ALT was a bit high at 68.

This stupid bloated feeling after eating though... I've gotta sort that out.  It's awful.

Mentally, I've been surprisingly stable and not freaking out too badly since diagnosis day, aside from the odd cry-in-the-shower or cry-over-nothing moment.  My focus/ability to complete tasks has improved greatly in the last 3 days.   If anything i'm starting to get bored (I took 2 weeks off of work) and more worried about my job and of course my family.  My mom has been just rock solid in front of me but I have to wonder how she is when i'm not around.  She was the first person I told and i started with "I'm so sorry" because I felt like i'd done something bad to her.  I'm very lucky so far that I haven't had severe depression/anxiety/etc like many seem to have... I guess i'm more focused on "What can/should I do next" than anything... so I suppose it may still 'hit' me at some point but for now i'm going to just keep pushing along.

jkinatl2:
Wow, holy crap.

Um, I mean welcome to the forums :)

It looks like you are handling this much in the same way I did, a long time ago. I'm usually a delayed-reaction kind of person, which comes in handy when dealing with HIV. I put all my ducks in respective rows, told family and friends, got on meds, and a month later just fell apart. But at least there was an infrastructure in place, so to speak. I think that it's great that you rallied the troops for this, and got on meds quickly - especially considering that low CD4 count and high viral load.

Getting the viral load down is job one of your regimen. It will stop further damage. Your body will eventually rebound, though don't be shocked if it takes a while. My lowest cd4 count was 12, and it has taken me years to get up to 180. Your mileage, of course, may vary.

I am on a regimen similar to yours, and the Norvir/Prezista/Truvada regimen is a sound one. Other than the runs, which wax and wane with no real rhyme or reason, there have been no real side effects. I am also on Isentress, which gives me a headache if I am not careful. Careful for me = eating food with my meds, and not just a nutrition shake while I'm heading out the door.

I am happy to see you handling things so well. Of course, we are also here for you if and when you don't. No shame in breaking down over this. You have found a safe place full of people who really know their shit concerning HIV, pun pretty much intentional.

Also, bonus points for recognizing IRIS when it happened. It took me two weeks in a hospital and verbal sparring with a team of doctors before my self-diagnosis of IRIS was confirmed, and some whack-a-doodle days and nights of hardcore steroids and the withdrawal from same. Staying on top of your condition requires a steep learning curve, and I notice that people who are up to that challenge fare much better than others.

lostinthecorn:
Thanks jkinatl2, holy crap eh? lol

did this drug combo cause the crazy foggy/'buzzing brain' head for you as well?

yeah we'll see how things go, particularly with the holidays coming... I'm betting i'll flip out a bit then :)  I found some birthday cards (my 40th was in August) and lost it briefly the other day with that thought of "was that my last birthday" and other ridiculousness... guessing thanksgiving/xmas/nye will throw a bit of that same stuff my way haha.

Left my apartment for something more than a doc appointment this evening, went to the grocery store!  First time out in almost a week, it was nice to get out for a bit.  Wish i could have driven myself but i'm definitely not ready for that, my head was just like WHEEEE when we started driving.

ok time to eat food and then a pile o' pills... good stuff :-D

-J

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