Author Topic: Just another dx story (Read 17022 times)

vrsan · « **on:** August 18, 2016, 03:46:05 pm »

Hello all,

I've been lurking on the forums for about a month now, and i thought it was time to introduce myself and my own personal story. In hindsight, i should have seen it coming - the mild thrush, the sudden (but not yet alarming) weight loss, the frequent comeback of herpes, they all pointed to one direction but i was still living in la-la-la land, and obviously have been for quite some time, hence the numbers later. Oh and the basics: i'm a 38 years old gay male.

So i was feeling relatively fine, when one day, the fever started. It wasn't too bad, but it was inconvenient, and while it got better by mild medicine (ibuprofen, mainly), it never quite went away completely. I went to ask my GP, she sent my to a couple of tests, they all came back negative (lungs, respiratory stuff, etc). It went on for four weeks, when i got submitted to a ward of the hospital dealing with infections, where, after about 4 days, i was handed the DX.

HIV+, CD4 77, VL 1500000. I didn't even know what these numbers mean, but i was told i have AIDS, because of the low CD4 and the thrush. (Which, by the way, was gone in 5 days by two capsules a day. Sweet.) Treatment was started immediately, i'm on Tivicay/Tenofovir (d.)/Lamivudine, prophylaxis against PCP, candy for the thrush, and some painkillers for the fever. I also had to go through lymph node biopsy, which was not fun, but thankfully it came back clean so that's a big phew.

Long story short: this was late June - early July, my next control is in 2 weeks, and i don't know what my numbers currently are. I'm optimistic, for two reasons: in the first two weeks after starting treatment, my fever disappeared, and my appetite returned. Big time. Gained back 15 pounds in a month

Thanks for suffering through this wall of text - i'm pleased to (virtually) meet you all!

Ptrk3 · « **Reply #1 on:** August 18, 2016, 04:23:32 pm »

Greetings vrsan: sorry about your diagnosis, but welcome to our forum community.

Yes, it is quite the shock when the diagnosis comes, no matter how much one may or "should" have seen it coming. One never thinks it's going to be "me," until, of course, it is.

The good news is that you are now in treatment, including the proper prophylactics to keep the opportunistic infections away. You will soon have an undetectable viral load and your CD4's will rise to much "safer" levels.

Your optimism is well founded, so keep thinking "positive" (no pun intended) thoughts. You will live a long and healthy life.

Use this forum as one of your support mechanisms and keep involved with it: we all look forward to reading about your progress.

Best wishes to you.

Tonny2 · « **Reply #2 on:** August 18, 2016, 09:30:15 pm »

ojo Welcome....the good thing is that you know you are positive, now you treat it, too bad you waited so long, the good news is that your treatment is good and I'm sure it is working....bieng positive while positive, helps a lot, keep up the good attitude and you will feel better....hopefully your soldiers (cd4) will increase rapidly so you can stop takin prphylaxis, meanwhile, stay awy from the sunrays...again, welcome and keep being optimistic, because nowadays, aids it is not a death sentence, just take your meds as prescribed and be greatful these meds are here for you and think about the people who are not that lucky...hugs ojo

vrsan · « **Reply #3 on:** August 19, 2016, 05:01:47 am »

Thanks guys, i really appreciate the quick reactions. One question, and maybe i'm overreacting: what's the wisdom for going out with my numbers? Of course i don't mean full blown bath house visits or a trip down to Mosquito Valley, but like an hour long coffee break with some friends at a public coffee house.

zach · « **Reply #4 on:** August 19, 2016, 05:16:12 am »

yeah it's totally safe, live your life as you normally would, go out and hug snotty babies, it's fine

don't be a shut in

virgo313 · « **Reply #5 on:** August 20, 2016, 10:03:16 am »

Hi Vrsan,
Just to say i also put back weight fast after start taking meds. In just 2 weeks, my Viral load drop from 220,000 to between 400-500.
Very sure that you have "turn around" & heading to a quick "recovery".. Thanks

mecch · « **Reply #6 on:** August 20, 2016, 05:14:26 pm »

Hi Vrsan welcome to the forums. I bet you will see encouraging results soon enough.

Tonny2 · « **Reply #7 on:** August 20, 2016, 05:20:15 pm »

Quote from: vrsan on August 19, 2016, 05:01:47 am

Thanks guys, i really appreciate the quick reactions. One question, and maybe i'm overreacting: what's the wisdom for going out with my numbers? Of course i don't mean full blown bath house visits or a trip down to Mosquito Valley, but like an hour long coffee break with some friends at a public coffee house.

ojo Just wash yiur hands before you eat, it helps...soon, you will be over the 200 level...good luck...hugs ojo

vrsan · « **Reply #8 on:** September 09, 2016, 08:42:09 am »

Hey guys,

First of all thanks for all the encouragement again, you have no idea how much it meant to me. To be honest, i had no one to discuss my status with (in the medical sense) in the last two months, and this forum functioned like an interactive database AND anon group for me. Hugs to each and every one of you.

Oh and i just called the clinic - after being on meds for about 2.5 months, my CD4 count is 220, which i'm really happy with considering it was 77 when i was diagnosed. According to my doctor, i can thank this to my 100% adherence.

No viral load, apparently they don't test for that on the first visit after the dx in the hospital (odd? but whatever).

So tweety birds, vivid rainbows and soothing sunshine to all of you, and myself

CaveyUK · « **Reply #9 on:** September 09, 2016, 01:47:53 pm »

Quote from: vrsan on September 09, 2016, 08:42:09 am

No viral load, apparently they don't test for that on the first visit after the dx in the hospital (odd? but whatever).

It is odd, because VL is the only marker which can determine how effective the medications are. Even odder, you are the second person I have seen recently (one on another forum) where VL hasn't been taken following treatment start.

CD4 bump is great, but CD4 can be impacted by a whole host of things, and can also spring up when other things that were suppressing it resolve. Knowing VL is important because that way you know everything is good in the meds department. Based on your numbers, I'm sure everything is fine, but it does surprise me when VL isn't checked.

Tonny2 · « **Reply #10 on:** September 09, 2016, 08:47:38 pm »

OJO CONGRATULATIONS...HUGS OJO

vrsan · « **Reply #11 on:** December 10, 2016, 09:51:17 am »

Hi all,

Thanks for the tips and good wishes. I've just had my first VL test since diagnosis, it's not UD, but not bad - 106, in 5 months, from 1.5 million. The CD4 is a bit disappointing, 192, down from 220, but the percentage is up one, and my doctor said i should not be discouraged - they often see the CD4 jump once when ART is initiated, and then the percentage rise slowly but steadily.

Cavey, i asked them, and indeed, VL is only checked every other visit, so twice a year. Apparently, it's because of the cost of the labs.

The meds work, things are getting better, i just have to be patient. I'm looking forward to my first "<20" on the paperwork

virgo313 · « **Reply #12 on:** December 10, 2016, 11:27:41 am »

Hi vrsan,

Good to think so positively.
VL down to 105, CD4 edging pass the 200 mark, % is up..
Thanks for sharing & wish you a better numbers the next time you post. Thanks

Tonny2 · « **Reply #13 on:** December 11, 2016, 08:16:52 pm »

OJO HELLO VSAN....CONGRATULATIONS, THE UD IS ALREADY THERE, YOU'SEE IT ON YOUR NEXT BLOOD WORK...IT TOOK ME FROM JANUARY 1995 TO MARCH 2007 TO GET UNDETECTABLE, DO THE MATH, SO, DO NOT WORRY...YOUR "SOLDIERS" (CD4) GO UP AND DOWN, ALTHOUGH YOUR NUMBERS MEANS NOT CHANGE AT ALL, THE % IS GOOD INDICATOR THAT THINGS ARE GOING GOOD...HANG IN THERE...AGAIN, CONGRTULATIONS....HUGS OJO

vrsan · « **Reply #14 on:** June 20, 2017, 08:14:46 am »

Hey, i hope it's okay to necro my own thread, as a sort-of blog of my progression.

So it's been almost a year since my diagnosis with AIDS, and things have changed indeed. I've just received my latest results, and this is important to me, since it's only the second viral load test since DX, and the first one in November was still 100-ish.

I'm UD!

Doc said that i probably have been for months now but they're only doing the VL test every 6 months here. My progression so far (in 6 months increments):
1.5M -> 100 -> UD
77 (6%) -> 190 (10%) -> 229 (11%)

While i'm not going to be studied for my marvellous immune response, what matters is that it's upwards. I'm not complaining. One thing is that i have very high creatinine levels, so i'm having an appointment next month about that, until then i eliminated alcohol, cut massively back on meat, and increased my water intake. We'll see next time if it worked.

As a whole, i'm feeling absolutely fantastic, to be honest i haven't been this well in the last five years or so. Had some side effects at first but they went away quickly, and the antiobiotics were a bit harsh on my guts while i was taking them (still, beats pneumonia!). I was 68kg when i was admitted, and now i put on about 20kgs of muscle and 5kgs of "not muscle"

, so i'm 93 now. Stopped smoking altogether (before DX, but now it's permanent), biking a lot, going to the gym, and just enjoying life in general.

I guess the reason i'm writing is mainly to show other recently diganosed people: even with AIDS, bad initial numbers, and slow recovery, it DOES get better, even if it doesn't feel like that at first. Everybody keeps saying it, and it's true. I realise i may develop this and that later (see my creatinine issues at the moment), but that's true for anyone, and the need to cut back on risk factors has made my life better in general. Hang in there

Ptrk3 · « **Reply #15 on:** June 20, 2017, 08:51:18 am »

Congratulations on your numbers! I'm glad to read of your progress and that you are feeling well. Thanks, too, for sharing your update so that those newly diagnosed can see how things can and do get better.

Keep up the good work and healthful lifestyle! Examples such as yours may explain why some people, in certain studies, who are HIV positive may well exceed normal lifespans.

paintedroom · « **Reply #16 on:** June 20, 2017, 08:54:14 am »

Hi Vrsan,

Welcome and glad to hear everything on the up with you.

We are very similar in many respects -Almost a year;Aids;nadir of 50 ->193 in first few months(did bloods there 3 weeks ago and havent bother to check);UD;also had high creatinine levels which turned out to be a protein shake i was taking,now fine;have cleaned up diet,alcohol and the odd smoke in order to give myself the best chance of getting and staying above 200 and moving out of AIDS territory.

Do you mind me asking you your age ? I`m 52 and am told cd4`s rise more slowly in older people.

Many thanks,P.

vrsan · « **Reply #17 on:** June 20, 2017, 09:02:29 am »

Ptrk3: Thank you

It's really astonishing how much can change in one year. My testosterone levels must be rising too if my mornings are any indication... :DD

paintedroom: I'm 39. The creatinine thing is still unknown in my case. I dont take shakes, but i did greatly increase my meat intake in the last 6 months. That plus TDF could well be the problem, but im waiting for my appointment as my HIV doc is on holiday.

Wade · « **Reply #18 on:** June 20, 2017, 09:06:33 am »

Good Job !
Glad to hear you are doing so well, you are an inspiration to all the newbies.
Thanks for the update .

Wade

Tonny2 · « **Reply #19 on:** June 20, 2017, 01:12:25 pm »

OJO HELLO @VRSAN....IT'S ALWAYS NICE TO HEAR GREAT NEWS, I'M GLAD YOU ARE DOING GREAT AND LET'S SEE WHAT HAPPENS WITH THE CREAINE THING, I'M SURE, YOUR DOCTOR WILL TAKE CARE OF IT...PROUD OF YOU FOR SHARING YOUR STORY AND EXPERIENCE WITH YOUR DIAGNOSIS OF AIDS, I GOT THE SAME DX 22 YEARS AGO...BEST OF LUCK, PLEASE KEEP US POSTED...CYBER HUGS OJO

vrsan · « **Reply #20 on:** December 07, 2017, 09:37:52 am »

Where does the time go?

It's been 1.5 years since diagnosis, feels like yesterday. The frequency of all my lab tests have been changed to once every six months, apparently that's the norm here once you're UD. My last blood draw was two weeks ago, and i just rang them for my numbers. No viral load yet, in my country that can take up to 5 weeks (crazy huh?), but the CD4 looks okay: 229 (11%) -> 358 (13%), i'll take it.

My creatinine levels are back to normal, but now it's serum amalyse that's high - there ALWAYS has to be something, right?

Anyways, it's nothing i can't deal with (and my doctors don't believe it to be hiv related). Because if these borderline values, my doctors are thinking about switching me to Descovy once it becomes available here - apparently it'll only be available to select people with demonstratable benefits.

Otherwise, i'm doing fine. Honestly, if it wasn't for the pills, i wouldn't even know the difference.

Jim Allen · « **Reply #21 on:** December 07, 2017, 09:52:03 am »

Great update and glad things are going well.

Jim

Tonny2 · « **Reply #22 on:** December 07, 2017, 04:29:15 pm »

ojo congratulations!!!...it's always nice to hear good news...i just celebrated 23 years of living with hiv/aids, almost 12 years with the same combo....and YES, if we wouldn't have to take meds, we wouldn't even know we have this condition, what a great way to start the holidays...let's see what happens with your creatine, i hope, you are eligible for a new combo...hugs ojo

Carlos 32 · « **Reply #23 on:** December 13, 2017, 06:37:00 pm »

Quote from: vrsan on August 18, 2016, 03:46:05 pm

Hola quisiera saber porque te mandaron una biopsia a un ganglio linfatico yo he empezado con cd4 de 120 y no me lo ordenaron, eso me preocupa amigo

I've been lurking on the forums for about a month now, and i thought it was time to introduce myself and my own personal story. In hindsight, i should have seen it coming - the mild thrush, the sudden (but not yet alarming) weight loss, the frequent comeback of herpes, they all pointed to one direction but i was still living in la-la-la land, and obviously have been for quite some time, hence the numbers later. Oh and the basics: i'm a 38 years old gay male.

So i was feeling relatively fine, when one day, the fever started. It wasn't too bad, but it was inconvenient, and while it got better by mild medicine (ibuprofen, mainly), it never quite went away completely. I went to ask my GP, she sent my to a couple of tests, they all came back negative (lungs, respiratory stuff, etc). It went on for four weeks, when i got submitted to a ward of the hospital dealing with infections, where, after about 4 days, i was handed the DX.

HIV+, CD4 77, VL 1500000. I didn't even know what these numbers mean, but i was told i have AIDS, because of the low CD4 and the thrush. (Which, by the way, was gone in 5 days by two capsules a day. Sweet.) Treatment was started immediately, i'm on Tivicay/Tenofovir (d.)/Lamivudine, prophylaxis against PCP, candy for the thrush, and some painkillers for the fever. I also had to go through lymph node biopsy, which was not fun, but thankfully it came back clean so that's a big phew.

Long story short: this was late June - early July, my next control is in 2 weeks, and i don't know what my numbers currently are. I'm optimistic, for two reasons: in the first two weeks after starting treatment, my fever disappeared, and my appetite returned. Big time. Gained back 15 pounds in a month

Thanks for suffering through this wall of text - i'm pleased to (virtually) meet you all!

JosephP · « **Reply #24 on:** December 13, 2017, 11:28:41 pm »

Quote from: vrsan on December 07, 2017, 09:37:52 am

Where does the time go?

It's been 1.5 years since diagnosis, feels like yesterday. The frequency of all my lab tests have been changed to once every six months, apparently that's the norm here once you're UD. My last blood draw was two weeks ago, and i just rang them for my numbers. No viral load yet, in my country that can take up to 5 weeks (crazy huh?), but the CD4 looks okay: 229 (11%) -> 358 (13%), i'll take it.

Otherwise, i'm doing fine. Honestly, if it wasn't for the pills, i wouldn't even know the difference.

Nice to hear the good news... Yes, the frequency of visits declines which is good but scary at the same time.. When I started I saw my ID dr. every two months.. 6 times a year... I am now going to see her only 3 times a year and not all the tests are run.. Fine with me... Makes life easier but still, in the background is the thought of the HIV lurking! Keep on with the meds and, as Tony2 says, you will be fine!!

JosephP · « **Reply #25 on:** December 13, 2017, 11:36:38 pm »

Quote from: vrsan on August 19, 2016, 05:01:47 am

Thanks guys, i really appreciate the quick reactions. One question, and maybe i'm overreacting: what's the wisdom for going out with my numbers? Of course i don't mean full blown bath house visits or a trip down to Mosquito Valley, but like an hour long coffee break with some friends at a public coffee house.

Hahaha... I hope you have gone out! Just take care of yourself...

vrsan · « **Reply #26 on:** December 14, 2017, 09:41:56 am »

Quote from: JosephP on December 13, 2017, 11:36:38 pm

Hahaha... I hope you have gone out! Just take care of yourself...

Man, last year i felt like a delicate little flower... "holding my breath while taking out the garbage"-level fragile

JosephP · « **Reply #27 on:** December 14, 2017, 10:43:51 pm »

Quote from: vrsan on December 14, 2017, 09:41:56 am

Man, last year i felt like a delicate little flower... "holding my breath while taking out the garbage"-level fragile

And I can relate to that! I was afraid of the temperature changes!! If it was too hot I was afraid... If it got too cold.. I was scared... Fortunately I have a pair of doctors that are just '10s' in the profession and with their help and vision, I am here 4 years later.... I also have great faith...

JosephP · « **Reply #28 on:** December 14, 2017, 10:45:49 pm »

Quote from: vrsan on December 14, 2017, 09:41:56 am

Man, last year i felt like a delicate little flower... "holding my breath while taking out the garbage"-level fragile

By the way, it is amazing to see how many situations, thoughts and moments we all share in this journey that is ours and only ours!!

paintedroom · « **Reply #29 on:** December 15, 2017, 04:30:18 am »

Yes, i remember that(CD4 50).Obsessively washing my hands,holding my breath if someone coughed,using sleeves to open doors.What a year and a half its been.

vrsan · « **Reply #30 on:** May 22, 2018, 06:55:37 am »

Hello everyone,

I think this is going to be my last post here, unless something extraordinary happens, which i doubt, but who knows. So slowly reaching the 2 years mark, my new numbers are in. VL is still UD, and CD4 358 (13%) -> 490 (19%). Needless to say, i'm happy with the still upwards trend, even if i had the shittiest flu-like something earlier this year

So i'm posting mainly for the benefit of the newly diagnosed: i too started low (77 / 6%), but do not feel discouraged, even tho we're all different, there's always a way up, take your meds (im still on my first regimen of DTG/TDF/3TC), be mindful of your health (i stopped smoking and renewed my gym membership) and it's going to be alright. I too had unexplainable "side effects" or whatever they were in the first few months (gut problems mainly), but they faded over time. Certain numbers on my bloodwork are off range, and then they're back in range, and then some other numbers turn red on the chart - the thing is, it might as well be the case for you with or without HIV, it's just that we're more closely monitored than the general population. Work with your doctors, even if it's a bit difficult (in my country it's a bit hard to get hold of them sometimes, but not impossible).

I remember coming home from hospital and walking down the street thinking about how my life is over and it really felt real at that point in time. Nowadays, my biggest health related problem is to lose some weight - looks like overcompensating AIDS is not the way to go

CaveyUK · « **Reply #31 on:** May 22, 2018, 03:48:01 pm »

You don't need to be sick to post here you know! In fact, hearing how you are getting on is really important to those who do turn up here devoid of optimism following a diagnosis

Really pleased you are doing well, and please do at least check in from time to time

Archimexican · « **Reply #32 on:** May 22, 2018, 06:48:43 pm »

Hi Vrsan

Great news. Congratulations on your numbers and thank you for sharing! As you may remember, I was diagnosed a few months ago with numbers similar to yours and this thread gave me hope that things would get better.

Please keep us updated on your progress and thank you again for your advice in those crazy days when I was starting therapy.

Hugs!

Tonny2 · « **Reply #33 on:** May 22, 2018, 08:34:51 pm »

ojo Hello my good friend vrsan...Congratulations for your good improvement, I remember your first post, you see, there is hope...I'm wishing you the best and do not forget about us, this might be your last post on this forum, but you can always keep us updated on the LIVING EITH HIV, forum...hugs and go back to your normal life, tho, no more smoking ojo

vrsan · « **Reply #34 on:** May 23, 2018, 06:30:26 am »

Hello guys,

Cavey, Tonny: gee i must have sounded overly dramatic... i only meant last post in this particular thread

I still read the forums and post when i think i can add something to the conversation. See you in the LIVING WITH section

Archimexican: my pleasure mate! Of course i remember, and i'm glad my little writeups helped. I hope you're in good health and got over the first weeks/months of shock. Keep it up!

Tonny2 · « **Reply #35 on:** May 23, 2018, 10:45:18 am »

ojo. Hello again... well, I guess you did sound pretty dramatic, I thought you didn't like us anymore, hehe... I'm glad you are staying to share your experiences with others specially, with the newbies who, when diagnosed, are lost and scared, like all of us were too...congrats again...your first post was three days before my birthday, and if you remember, I replied to your original post

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Author Topic: Just another dx story (Read 17022 times)