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Author Topic: Hello, I'm Bean  (Read 2410 times)

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Offline beanstalk

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Hello, I'm Bean
« on: September 29, 2018, 05:45:55 am »
Hello, I'm Bean, I'm male, just turned 23 and I come from the beautiful city of Lisbon.

On the 21st of August I went for my normal checkup on the STDs at a hospital. On the 28th, I got my results but instead of the usual Non reactive they asked for a confirmation test. I repeated the test and it came out positive for HIV-1.

I feel like my life is over. I have a friend who is HIV positive (he's in a different country) and I've been talking with him but it's very hard to cope with my result.


I went for a medical appointment at a different hospital and the doctor said they were going to do some tests to see the virus resistances, my virus load, cd4 count and cholesterol, etc. He said that based on previous testing I was infected from December forwards. He didn't prescribe any medication and I've been waiting all alone for a month since the next appointment is on the 2nd of October.


Is it usual that the doctor didn't prescribe anything? For a month? The first test had written "4th generation test: search for Ag and Ac sensibility Ag p24 < 1.30 UI/ml. Does this say anything about my state? Am I low reactive? Is it good?

I know I was supposed to be very sick for a week or so, but I've been busy with the university for the whole year and I'm pretty sure if I had been really sick I would have noticed (plus I'm a little bit hypochondriac). I don't feel any change in my body, except for this rash that appeared on my face at the end of July and didn't go away yet (but probably because of all the sun at the beach).

In fact, I have had HIV symptoms all my life (I have recurrent mouth sores since I was a baby, stupid skin allergic reactions, pain in my wrists when I wake up in the morning sometimes and some other things). The rash on my face made me connect some dots and has made me realize that I might have been living with lupus all my life without noticing. It looks exactly like the famous butterfly rash, with the exception of the nose (I only have it on my cheeks). I have been considering putting makeup over it since all my friends have been noticing at the university (everyone comments I have a sun burn). I am going to talk to my doctor and ask for a rheumatologist appointment.

I can't wait until I start ART, I feel like if I become undetectable I will feel much better about myself. I'll be lurking around here for the rest of my life, it seems.

Oh and please spear me the healthy, long life talk. I'm already kinda sick of reading it over and over.


PS: I have been having trouble sleeping and keeping attention in class and I've asked for a psychologist at the hospital a week ago, but no one called me back...

Offline JimDublin

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Re: Hello, I'm Bean
« Reply #1 on: September 29, 2018, 06:16:02 am »
Lisbon, cool one of my favorite city's to visit. Used to travel to Lisbon for work.


Oh and please spear me the healthy, long life talk. I'm already kinda sick of reading it over and over.

Because its the truth or choice you have at least, as HIV in itself is not a roadblock to a long healthy life with treatment

Quote
I feel like my life is over. I have a friend who is HIV positive (he's in a different country) and I've been talking with him but it's very hard to cope with my result

Sorry to hear you feel this way. Any particular reason why? Its just a manageable medical condition, sooner or later the majority of people have one or multiple conditions in life.

Glad to hear your friend is supportive. Have you look if there are any peer support groups in uour area so you can meet and talk to others face to face?

Quote
Is it usual that the doctor didn't prescribe anything? For a month? The first test had written "4th generation test: search for Ag and Ac sensibility Ag p24 < 1.30 UI/ml. Does this say anything about my state? Am I low reactive? Is it good?

Its a signal value on the initial screening test. Its not good or bad and does not reflect your health or the length of infection if that is what you mean. Waiting a month before starting treatment should not pose an issue, particularly not if your pending labs are okay and your overall health have not been affected by HIV.

Just follow the course the doctor has with you, getting the labs results and resistance testing done before making a treatment choice.

Anyhow I wish you well. Until your lab results are back I am going to ask you to only post in this one thread. The other forum members can chime in and support you here.

Jim

« Last Edit: September 29, 2018, 06:22:57 am by JimDublin »
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Offline JimDublin

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Re: Hello, I'm Bean
« Reply #2 on: September 29, 2018, 06:27:26 am »
Quote
PS: I have been having trouble sleeping and keeping attention in class and I've asked for a psychologist at the hospital a week ago, but no one called me back...

Sorry to hear your having problems sleeping/focusing. Prehaps seeing your normal doctor (GP) in the meantime might offer some help, perhaps they can at least offer something to help you get a good nights sleep and/or refer you to a therapist with a shorter waiting list.

Jim
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Offline MarkintheDark

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Re: Hello, I'm Bean
« Reply #3 on: September 29, 2018, 07:02:27 am »
Hello Bean and welcome.  I'll otherwise spare the platitudes, as you asked.

As upsetting as a diagnosis can be (on top of the usual pressures at university), your thinking is clear and you're asking good questions.  You're already being proactive by seeking counseling.  I'd encourage you to be persistent.  You've identified a good priority for yourself.

You'll be encountering what I call an alphabet soup of blood values, etc.  For a while, too, you may be obsessed with the numbers.  That's perfectly normal.  This is a new experience for you.  Primarily you'll want to pay attention to your viral load (VL) and CD4 count.  The goal with medication is an undetectable (UD) viral load count, as you already know.  The CD4 value can be important if it's around 200 or less (one indication of moving into AIDS territory...but just one indication).  Even at that, I lived fine for years below that level.

Your choice of HIV meds (and adherence) will be your number one priority.  The idea is to reduce the stress on your immune system.

But, until your labs are back and you've chosen medication - sounds like you're already doing this - take care of the health issues you can, like your sleep.  You may want to consider what you can do to reduce stressors in your life, too.  Peer support, as mentioned is particularly good.  Also, do you play sport?

One advantage you'll have here is that you're part of a community of people with A LOT of experience.  Lean on us.
HIV dx - 02/93
AIDS dx - 07/01
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Offline CaveyUK

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Re: Hello, I'm Bean
« Reply #4 on: October 01, 2018, 07:59:32 am »
The healthy long life talk is repeated a lot because it is absolutely true, but still many don't realise this which causes a lot of anxiety for folks (take a look at the 'Am I infected' forum) as well as a panic and depression which can set in around diagnosis but given the scientific advances, are not really justified.

At least if you are sick of reading about it, then you will know the facts which is a start, but you should also know that your life isn't 'over' in any way, shape or form. In fact at 23 you are still a baby and you have a long life in front of you.

Don't worry about not getting seroconversion symptoms. Many people don't get any, or get them so mild they barely notice.

And given you have a relatively recent infection by the sound of things and don't have any symptoms or complications, there is no problem with the doc waiting a few weeks to prescribe. In most cases, it takes years for the immune system to be eroded to the point where urgent intervention is necessary. Your lab results will inform the doc (and you) of the next steps.

Good luck with everything and keep us posted
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Offline harleymc

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Re: Hello, I'm Bean
« Reply #5 on: October 01, 2018, 11:57:21 pm »
"I feel like my life is over."

It's good that you can identify and name your feelings.  It is just a thought it doesn't reflect or shape reality.

Offline beanstalk

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Re: Hello, I'm Bean
« Reply #6 on: October 02, 2018, 01:56:03 pm »
Just came back from the doctor

CD3+/CD4+ (Helper T Cells): 21,23%
CD3+/CD4+ (Helper T Cells): 450.93 Cells/ul

Viral load: 283000 copies/mL

Subtype: G

There's lots of other things I have no idea what they are about.

Doesn't have resistance mutations, it's a bit resistant to EFV and resistant to NVP.


Came back home with two boxes of Triumeq. Chugged one about one hour ago, I'm still alive (my tummy is a bit upset tho).


Any thoughts on my numbers? On the medication? I feel so scared and lost. I hope I sleep well, I always have trouble sleeping and I don't want stuff adding up to it.

Offline JimDublin

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Re: Hello, I'm Bean
« Reply #7 on: October 02, 2018, 02:19:01 pm »
Reasonable CD4 count, not that it matters as the goal is suppressing the virus so the body can focus on better things. Also CD4 is not a measurement of health, average for a HIV negative person ranges from 400 - 1200 depending on person, age, sex etc.

Triumeq, same medication I take. I pop mine in the AM without food

Other than settling in phase if noticed at all you should simply not be anticipating any issues.

Jim
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Offline CaveyUK

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Re: Hello, I'm Bean
« Reply #8 on: October 02, 2018, 03:34:23 pm »
Yep numbers are fine

Given it's a fairly recent infection, I'd ignore the CD4 completely from now on as it's only really relevant if it's pretty low or you have a long standing infection.

So the only meaningful number you want to concern yourself with is the viral load. It's hard to believe but within days that number will tumble down massively...right now, it's coming down...as I type. Within a short period of time you will be undetectable that means that your body won't need to deal with the virus anymore in the same way and any transient damage done by it will start being repaired naturally.

Given it's recent, I wouldn't expect much - if any - lasting damage, so before long the only thing you need to do is keep that virus suppressed, which means staying adherent to your meds.

Modern HIV drugs are great. The first few days can be a little odd, but ultimately you shouldn't have any problems taking them at all. In the rare instances where people struggle with any side effects, the drug can be switched out. Triumeq isn't known for problems though.

Then your biggest issue will be just coming to terms with the mental side of things, rather than anything physical. Some people find that easy, some less so - but always feel free to vent or ask questions on here.

Bottom line is - you caught it early, you are on treatment and once you get your head around your little passenger you will be able to get on and live your life as you would have done without all this.
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Offline Tonny2

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Re: Hello, I'm Bean
« Reply #9 on: October 02, 2018, 08:47:24 pm »


     ojo.     Hello beanstalk, I'm glad you started treatment, and not you ain't going to die because you're taking medication, on the contrary, being a new infection, I'm sure that in three months you would be undetectable if you take your medication as prescribed. I know that you don't want to hear this but it is the truth... Good luck and please keep us posted... hugs.                            ojo

Offline beanstalk

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Re: Hello, I'm Bean
« Reply #10 on: October 03, 2018, 05:00:15 pm »
Thanks a lot for the replies.


I have two questions.

Can I drink alcohol while taking the medication? Tomorrow there is a party at the university where I am expected to get drunk (I don't usually drink so it doesn't take a lot for that to happen  ::) )

I like going to the beach and it gets pretty hot in the sun. Earlier this summer I took an apple with me and when I ate it it was cooked. When I go I spend all day there so I have to take my meds. Does anyone have any tips on storing them? I'm afraid of putting them near frozen water bottles because of the humidity.

Offline JimDublin

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Re: Hello, I'm Bean
« Reply #11 on: October 03, 2018, 05:21:35 pm »
Few hours on the beach is not an issue, neither are a few beers/drinks in regards to your meds or the odd party.

If you start doing it everyday, or in excessive ammounts etc etc sure its not great, moderation is key.

If you do a quick search of the forum "alcohol" you will find plenty of reassuring thread.

https://forums.poz.com/index.php?topic=69861.msg745379#msg745379

https://forums.poz.com/index.php?topic=70315.msg747642#msg747642

https://forums.poz.com/index.php?topic=68859.msg740252#msg740252



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Offline beanstalk

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Re: Hello, I'm Bean
« Reply #12 on: October 04, 2018, 09:23:44 am »
Thanks a lot. I have another question. We have summer time here in Portugal, sometimes the time changes by one hour (ahead or behind). Is it OK if I keep taking them at the same time, despite the one hour difference? Would it be fine?

Offline Tonny2

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Re: Hello, I'm Bean
« Reply #13 on: October 04, 2018, 01:39:58 pm »


      ojo.     Hello Bean, I've been taking medication for 23 years and I always take my medication at the same time, it doesn't matter if it is fall or spring (change of time). You will  be fine if you so the same I've been doing....abracos.. tchau.                     ojo

Offline JosephP

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Re: Hello, I'm Bean
« Reply #14 on: October 04, 2018, 08:15:04 pm »
 :) "Oh and please spear me the healthy, long life talk. I'm already kinda sick of reading it over and over." ;) ;) Yet, that is the 'core' of this forum!!!  :-\ :-\
« Last Edit: October 04, 2018, 08:18:01 pm by JosephP »
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline LeftyBowler300

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Re: Hello, I'm Bean
« Reply #15 on: October 05, 2018, 10:11:46 am »
:) "Oh and please spear me the healthy, long life talk. I'm already kinda sick of reading it over and over." ;) ;) Yet, that is the 'core' of this forum!!!  :-\ :-\

I know right?  8)
Good CD4 count. No resistances. Pop a pill a day and go play. Enjoy your "long life."  ;D
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh... wtf
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), lab took wrong HIV test (AB not VL)
Challenge Accepted.

Offline JimDublin

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Re: Hello, I'm Bean
« Reply #16 on: October 05, 2018, 01:44:48 pm »
Thanks a lot. I have another question. We have summer time here in Portugal, sometimes the time changes by one hour (ahead or behind). Is it OK if I keep taking them at the same time, despite the one hour difference? Would it be fine?

An hour later or early is simply no difference.

Jim
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Offline beanstalk

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Re: Hello, I'm Bean
« Reply #17 on: October 06, 2018, 10:28:06 am »
Just an update...

I've been taking Triumeq since Tuesday and so far I have survived, despite me thinking I might die on the second day (got sweaty and everything, only for a while tho). Right now taking it feels like eating a huge meal, I feel so full and I get the "acid in my throat" feeling. It goes away after two hours tho. Will it get better? I guess it is a small price for survival..

On another note, I have been dreaming every single night since taking the pills. I realised I didn't dream for a long time and the change is good, they are not bad dreams, just silly. Is this normal?

Another thing I've been noticing is my mouth is a bit dry (but maybe it's just the weather...) and the food doesn't have so much flavor? It's like the flavour has been toned down a little bit. Everything tastes a little bit dull. I hope it goes away with time.

Meanwhile, a friend of mine who is a doctor pointed out to me that each box of the pills I'm taking costs more than two thousand euros. I have had economical difficulties all my life (I have a scholarship and live in a house given to me by the government so I can study...) and I have two boxes of it in my drawer. This is more money that I have ever had. I feel ashamed that I am costing so much money to my country and I am wondering why would I deserve this when so many people struggle to get it (in the US too...). I am terrified of ever loosing one of the boxes. I'm thinking of buying a box with a locker to keep them in so my roomate or cleaning ladies can't get a hold of them... I have no privacy in my "home".


The hardest thing for me right now is the people. I went to the beach yesterday and seeing all the couples hit hard. I guess I should avoid social environments, maybe I should just stay at home playing League of Legends all day from now on. I hope it gets better tho.

Offline JimDublin

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Re: Hello, I'm Bean
« Reply #18 on: October 06, 2018, 11:01:14 am »
Quote
I've been taking Triumeq since Tuesday and so far I have survived, despite me thinking I might die on the second day (got sweaty and everything, only for a while tho). Right now taking it feels like eating a huge meal, I feel so full and I get the "acid in my throat" feeling. It goes away after two hours tho. Will it get better? I guess it is a small price for survival..

On another note, I have been dreaming every single night since taking the pills. I realised I didn't dream for a long time and the change is good, they are not bad dreams, just silly. Is this normal?

Another thing I've been noticing is my mouth is a bit dry (but maybe it's just the weather...) and the food doesn't have so much flavor? It's like the flavour has been toned down a little bit. Everything tastes a little bit dull. I hope it goes away with time.

Look other-than perhaps some minor settling weeks/months you should not be expecting any issues and if you do have them at that stage report it to your doctor.

Wild dreams when starting treatment seems to be anecdotally enough a common thing, it should settle with time. Enjoy them in the meantime  ;) You could try switching to taking this medication in the morning, this is when I take my meds.

The rest if you ask me sounds a lot like coincidence, being hyper aware of yourself and/or the mental aspect of starting out & coming to terms with the diagnosis/treatment. Whatever it is, if it does not settle after a while and bothers you than speak to your doctor.

Quote
Meanwhile, a friend of mine who is a doctor pointed out to me that each box of the pills I'm taking costs more than two thousand euros. I have had economical difficulties all my life (I have a scholarship and live in a house given to me by the government so I can study...) and I have two boxes of it in my drawer. This is more money that I have ever had. I feel ashamed that I am costing so much money to my country and I am wondering why would I deserve this when so many people struggle to get it (in the US too...). I am terrified of ever loosing one of the boxes. I'm thinking of buying a box with a locker to keep them in so my roomate or cleaning ladies can't get a hold of them... I have no privacy in my "home".

Yeah ... First world meds at first world prices, totally overpriced of course. Generic meds are far cheaper and cost a fraction of the price. Although this exact pill has no generic yet.

I have 10 bottles of the same pills in my medical kit, I don't feel guilt. I have a medical condition, plenty of people do with some of them costing more than mine, I don't set the pricing or sit at the table when negotiating deals with the drug companies, no point feeling guilty about things I can't directly change, I choose instead to be aware of it and this reflects my participation in protests for change and in my voting habits

Jim
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Offline JosephP

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Re: Hello, I'm Bean
« Reply #19 on: October 07, 2018, 12:28:30 am »
"I have 10 bottles of the same pills in my medical kit..." Isn't it crazy, Jim, how we all look for that cushion, the safety net of having those extra bottles!  ;)
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline beanstalk

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Re: Hello, I'm Bean
« Reply #20 on: October 07, 2018, 11:03:33 am »
Is it usual for the second blood tests (one month after starting treatment) for them to ask for "Antinuclear ab (ANA)" and "Anti-dsDNA ab"? I just noticed them in the paper.

Offline Tonny2

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Re: Hello, I'm Bean
« Reply #21 on: October 08, 2018, 03:27:57 pm »


     ojo.       Hello again Bean n... I think I got these kind of tests in 2006 when I had vasculitis, also I was dealing with other issues. The doctor was checking if I didn't have any other auto immune desease, lo lupus, p˙rpura. He did find DILS (I think it spells like that), but u was so sick, zero cd4, which I think it's not your case... how about if you call your doctor and find out why those tests have to be done.. best of luck... abracos.      ojo

Offline beanstalk

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Re: Hello, I'm Bean
« Reply #22 on: November 13, 2018, 11:52:13 am »
I just came back from my first appointment after starting taking the meds. I am undetectable already! All values seem to be fine and I have no medication side effects but the nausea. The doctor said I should start taking the meds before going to sleep instead of the middle of the afternoon.

I came back with six months of medication prescription and only have to come back in May. I also took the pneumonia vaccine and started the Hepatitis A vaccine course (I had taken it before but it seems it didn't work...)

I tested positive in my ANA test. My face is still red (the butterfly rash) and I am being redirected to another doctor.


Overall I feel OK and I think I moved on from the post traumatic experience. I'm seeing someone (he knows I'm poz) and I'm really happy.

Offline JimDublin

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Re: Hello, I'm Bean
« Reply #23 on: November 13, 2018, 12:02:29 pm »
Great update, glad all is going well for you and congrats on the dating :)
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