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Author Topic: 2 weeks since diagnosis, thought I'd say hello  (Read 5297 times)

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Offline lostinthecorn

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2 weeks since diagnosis, thought I'd say hello
« on: October 10, 2012, 03:49:39 PM »
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.
« Last Edit: October 10, 2012, 04:18:43 PM by lostinthecorn »
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline tednlou2

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #1 on: October 10, 2012, 05:07:56 PM »
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.

Offline lostinthecorn

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  • Don't look at me that way, look at me THIS way!
Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #2 on: October 10, 2012, 05:28:46 PM »
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.
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline jkinatl2

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #3 on: October 10, 2012, 07:21:04 PM »
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.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline lostinthecorn

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #4 on: October 10, 2012, 09:07:58 PM »
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
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline drewm

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #5 on: October 10, 2012, 09:16:28 PM »
Welcome to the forums!  :D
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline jkinatl2

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #6 on: October 10, 2012, 09:43:26 PM »
Hmm... well, my brain is basically a colander after all these years with HIV, so if there's been additional brain blurring, I'm likely too far gone to really notice. One thing Isentress does, though, is give me insomnia. Sadly, the best remedy for that also contributes to the overall fog. Eh, whatever.

And good to remember that holidays are hard. I'd go so far as to call them awful. I stuff my pockets with Klonopin just to get through. Luckily I've got friends, family members I actually like, and places like this forum.


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline lostinthecorn

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  • Don't look at me that way, look at me THIS way!
Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #7 on: October 10, 2012, 11:20:22 PM »
thanks drewm!

jk, you have gained another potential ear here if you need it!
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline lostinthecorn

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  • Don't look at me that way, look at me THIS way!
Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #8 on: October 11, 2012, 03:51:41 PM »
Quick update - spoke to the clinic today and she said my resistance test results look "really good" - so I may be able to change to atripla or something in a few weeks/months... that's the good news.

The not as good news is that I do have a HepB viral load, she wouldn't really just say what it was so i'm guessing it must be a big number.  At least the Truvada is dealing with that at the same time.

Today is day 14 of meds and i'm feeling so much better than i was a week ago, sleeplessness again last night but I finally fell asleep... i'll either take the pills earlier or switch to mornings if i can function through the weird headrush type effects (or better, if they go away).  Or maybe i'll ask for something to help me sleep, hate to take yet another pill though!
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline jkinatl2

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #9 on: October 12, 2012, 05:41:07 PM »
It's great to hear that the meds are making you feel better! Well, it's terrific that you are feeling more energized no matter why :)

I have tried lots of stuff for the sleep issues over the years. Most of the stuff that works also puts me in brain fog the next day. Apparently you don't just "shake off" some of that stuff when the alarm clock goes off. Honestly I have only found one thing that works, and I'm eerily refreshed when I wake up. It is, however, not legal in many states, gives me the munchies, and rhymes with "hare-a-wanna."

Good thing I already appreciate classic rock.

BTW, Atripla is well documented to cause that brain fog, and sometimes worse. I know there's a real convenience dealing with one pill a day, but maybe Complera would be a good fit as well? I'm fairly certain that in the years to come dosing is about to get a whole lot easier, what with several combined therapies in the pipeline. There's even a study going on with twice-monthly infusion therapy for those with an undetectable viral load, which might someday take the place of daily dose therapy altogether.

But that's years in the future I think. Regardless, you seem to be doing pretty great. It's refreshing and just a teensy bit rare to encounter that on this part of the forum :)

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline lostinthecorn

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #10 on: October 12, 2012, 06:17:33 PM »
Thanks jk - I have no idea what this substance is you're referring to :-P LOL  It's not legal here and I haven't tried it (yet) :)

So I tried something 'new' today when I woke up and drank a Dr Pepper... the caffeine/sugar seemed to clear the fog quickly.  Strange how old habits seem to be helpful in that way.

I'm holding a lot of hope for Cortistatin A or the Zinc Finger stuff they're testing (http://planetsave.com/2012/07/19/compound-derived-from-sea-sponge-virtually-eliminates-hiv-in-infected-cells/) (http://www.aidsmap.com/page/1681138/) - but first things first I've gotta fight my way to that undetectable VL and >200 CD4 count probably.

Yeah I'm totally open to what they put me on when the time comes, I think my clinic seems to prefer Atripla... but I haven't had much face time with any of the actual docs to ask them about things like that.  This first phase has been much more about making sure i'm safe/stable since my #'s were crappy... but I'm hopeful that in a few weeks/months we'll be ready for more of these longer-term discussions.  Thankfully my clinical team seems to be very well engaged in education/research as well as treatment, so hopefully I'll have multiple options when the time comes.

Oh and more good news... we jump started my car today (it died from sitting a month or more in the garage, i think 6 weeks?) - and I DROVE A LITTLE BIT!!  It's been quite a week... feeling better, went to the grocery store, cooked several meals on my own, now i drove! amazing how your perspective changes when something like this happens... and what can make you feel so happy and excited!
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline emeraldize

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #11 on: October 12, 2012, 07:59:38 PM »
Welcome Lost,

Getting caught up on your thread and just want to say hey.

While you chose Lostinthecorn as your handle, you seem to be handling a harvest of hiv and hep news as well as anyone might hope to.

JK is a great writer but a really bad speller -- hare-a-wanna is actually spelled hairawana.

Back to Words with Friends and Sentences with Enemies.

Em




Offline weasel

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #12 on: October 12, 2012, 08:04:20 PM »

     Welcome  lostinthecorn  ,

                                          I hope you are feeling well  :)

    You appear to have a good handle on HIV , That's good .
      I am on   Norvir/Prezista/Truvada  and  feel GREAT   ;)

        Hope to hear lots of good stories   :D

                                                    Weasel

  Modified to say :  I would not sleep a wink with out Trazadone
   
« Last Edit: October 12, 2012, 08:06:55 PM by weasel »
" Live and let Live "

Offline jkinatl2

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #13 on: October 12, 2012, 10:54:30 PM »
Welcome Lost,

Getting caught up on your thread and just want to say hey.

While you chose Lostinthecorn as your handle, you seem to be handling a harvest of hiv and hep news as well as anyone might hope to.

JK is a great writer but a really bad speller -- hare-a-wanna is actually spelled hairawana.

Back to Words with Friends and Sentences with Enemies.

Em





See, I was going back and forth on being all Halloween - like and calling it Scare-A-Wanna.

But your point remains. My spelling is craptastic.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline emeraldize

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #14 on: October 12, 2012, 11:01:40 PM »
 8)

Offline lostinthecorn

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #15 on: October 13, 2012, 02:44:49 PM »
You guys made me smile and laugh this morning :)  Thank you!

Well it's been 3 weeks since diag day as of yesterday (and about 2 1/2 weeks since going on meds), I celebrated by making a pot of loaded baked potato soup and then proceeded to eat way too much.  That 'gigantic abdomen' feeling is back today though, usually it goes away overnight after taking my pills but today it's sticking around and soooo uncomfortable.

I suppose I should start posting in the "Living" section now, 3 weeks doesn't sound very new anymore ;-)
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline emeraldize

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #16 on: October 13, 2012, 04:56:05 PM »
You guys made me smile and laugh this morning :)  Thank you!

Well it's been 3 weeks since diag day as of yesterday (and about 2 1/2 weeks since going on meds), I celebrated by making a pot of loaded baked potato soup and then proceeded to eat way too much.  That 'gigantic abdomen' feeling is back today though, usually it goes away overnight after taking my pills but today it's sticking around and soooo uncomfortable.

I suppose I should start posting in the "Living" section now, 3 weeks doesn't sound very new anymore ;-)

You ride that New Train as long as you wish. Big changes get a year in the Newness Roundhouse, don't they?  But, by all means if you're gonna brag about your cooking skills, move it on over to Living -- no one wants to miss menu item.

What a tasty-sounding soup you made!! When you over-stuff yourself, pre- or post- medication -- don't plunk down in a chair -- go for a walk  -- nothing gets that bloat down like motion, gravity and open-air off-gassing. Oui?

Offline mitch777

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #17 on: October 13, 2012, 06:30:27 PM »
Hi Lost and welcome!

ALL of you are TOO much! ;D

Spelling errors are common here  ;) but what is pretty uncommon is to hear from someone that was diagnosed so recently with your great attitude and your wanting to reach out to others.

I applaud you!

So glad you joined us and please don't take it personally if Miss P. wants to alter your recipes. ;D

Mitch

32 years hiv+ (oct. 2013) with a curtsy.

Offline lostinthecorn

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #18 on: October 16, 2012, 03:00:50 AM »
Thanks everyone, and thanks for the warning, Mitch haha!

Here I am up too late tonight, my energy levels have been crazy - sleep for 7-8 hours at most then I'm just done sleeping, no nappy time or anything anymore.  I was able to sleep 10-12 hours easily and then still need a nap before all of this started, maybe I was feeling worse than I even realized.  I guess I'll have to start getting back in the gym this week :)

Had a follow-up today... gained a few pounds (I lost 10 thru all of this so I'm happy to have gotten 5 back)... resistance test found 0 mutations causing resistance so that's good.  The "big wig" main doc visited with me today (she's so intense!!) and changed me from Bactrim to Dapsone (they think I have a rash but I'm always kinda pink!) and was pretty adamant that we change to Atripla, so I'm finishing out the Prezista/Norvir/Truvada (About 2 weeks worth) then giving that a go.  HepB VL... eh I don't wanna talk about it, the number was scary to see (Though I don't know what's considered high and so forth).  They drew blood for metabolic panel and a fresh HepB VL to see if it's gone down, seeing a retina doc to see how things are there and getting an ultrasound of my liver.  No new CD4 count until January as they "wouldn't want me to be disappointed if things weren't what I was expecting" - but they're going to check HIV VL in a month. 

Next "Real" appointment though is the January one, so we're already shifting to a 3-month schedule which surprises me.

Haven't cooked much since last week, but went out for dinner tonight and ate copious amounts of German food :)  It was SO good.

OK I always seem to write a book, maybe I need a blog lol - hope everyone is well and the start of the week wasn't too tough :)

I'll have to post in the other forums soon lol

-Jon
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline jkinatl2

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #19 on: October 16, 2012, 03:27:23 AM »
Just wanted to give a shout out to a fellow Jon :)

-Jonathan (JK)
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Online zach

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #20 on: October 16, 2012, 09:01:53 AM »
hey jon, welcome

i don't really have anything to add, just an observation on your name

lost?! really? cause you seem like you know right where you are, and where you're going. i know we all try to put on a brave face but you've got a solid handle on understanding your situation thats miles ahead of most recently diagnosed.

i don't think you're lost at all man.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline emeraldize

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #21 on: October 16, 2012, 06:20:49 PM »
Thanks for the update, Jon. Glad your appetite's up and weight, too. January will be here before you know it.

Offline lostinthecorn

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #22 on: October 17, 2012, 01:34:17 AM »
haha hey zach! couple of people have said the similar lol :)

So I guess to give a bit of background and my view on some stuff (hopefully it helps someone out)

I guess I came out around 1991 and at that point in time and where I was living my group of friends were very heavy on HIV/AIDS education and prevention... we'd talk about ACT-UP and go to Pride and participate as much as we could in the community.  I was always sort of one of those "wrap that rascal!" people/preachers back then (and still am I guess despite) and had always led a pretty careful sex life.  Something obviously went wrong along the way...but dwelling on that end of it isn't very productive so what's left but to look forward! I'm one of those people that once I'm drilling into a topic I'll learn all i can, makes me a good IT person too lol - but yeah education - whether it be about prevention or about moving forward from "D-Day+" - is so important I think.  Some doctors might seem annoyed if a patient is super educated about a given health issue, but I personally believe it's to an individual's benefit to know all they can... not necessarily to question decisions a health care provider might make, but instead to be able to ask intelligent questions and be a partner in the treatment/healing process.

I just consider myself to be very fortunate and am so thankful... finding this forum, having a supportive family, educating myself, and having health care folks that will answer questions and engage in intelligent discussion about options and my future have made all of this easier I think.

So, though I'm still 'new' here and haven't engaged in a lot of posting/chats yet, I do owe everyone here a "Thank you!" because just being able to read the stories, advice,etc has been more helpful than I could have ever imagined.  I only hope I, at some point, have the opportunity to be helpful for others as well like you have.

BTW: I have a picture and story being published in the next positively aware mag since "A Day With HIV" happened on my D-Day it seemed appropriate... you'll know it's me when you see the pic lol

Hope you're all doing well! :)
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

Offline tednlou2

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Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #23 on: October 23, 2012, 11:19:46 PM »
BTW: I have a picture and story being published in the next positively aware mag since "A Day With HIV" happened on my D-Day it seemed appropriate... you'll know it's me when you see the pic lol

I'll look for it.  Btw, how did you get hooked up with the magazine?  When is it coming out?

Offline lostinthecorn

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  • Posts: 35
  • Don't look at me that way, look at me THIS way!
Re: 2 weeks since diagnosis, thought I'd say hello
« Reply #24 on: October 24, 2012, 12:45:51 AM »
They posted the online version I think today or within the last few days... but it says I'm in Kansas...lol which is close but not quite where I'm at ;-) On my d-day I stopped at the clinic where I would be seeing the specialists... just wanted to show my face and quickly say hi to the people i would quickly befriend and partner with for my treatment and they handed me a few of the poz-focused magazines.  There was an ad on the back of PA for "A Day" so I took a quick pic and sent it in.
1/2014 - CD4 446 | HIV VL 157 (i was sick that week too!)
11/2013 - changed from Atripla to Complera (not from CD4 drop, because Sustiva makes me crazy!)
10/2013 - CD4 214 VL UD
9/2013 - CD4 276 VL UD
7/2013 - CD4 367 VL UD
4/8/13 - CD4 288/23% | HIV VL UD! | HBV VL 86
1/15/13 - CD4 239/21% | HIV VL 43 | HBV VL 2800
11/15/12 - VL 1,100 :)
10/27/12 - Switch to Atripla
10/15/12 - Changed from Bactrim to Dapsone
9/25/12 - Diag HBV+, CD4 49 CD4% 13.8  VL 1.2Mil
(started Norvir, Prezista, Truvada + Bactrim + Fluconazole)
9/21/12 - Diag HIV+

 


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