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Author Topic: HIV+ CD4 9  (Read 1687 times)

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Offline Mirko

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HIV+ CD4 9
« on: April 06, 2014, 09:01:34 PM »
Hey there everyone! Well, here it goes, my first post here. It started in October, I had this very strong vertigo attacks, everything would spin really fast I couldn't see anything and I would just start throwing up, I couldn't get out of the bed for days. Then I would start feeling slightly better, then I would throw up again... then feeling better again, then again throwing up... I thought its just some stomach virus that I might have caught... All this time I felt really tired I could barely get out of the bed... Finally, I went to see a doctor, but only because I felt like my sense of balance was out of control, every time I tried walking it felt like the ground is moving a little bit, I wasn't stabile at all, it was like I was drunk all the time, although I wasn't. So, at first doctor thought is nothing its just me being tired or I was out in the sun for too long... then after a week, I came back since the dizziness sensation wasn't going away at all, and I felt super tired most of the time. This time they sent me first to a neurologist, then to a ear/nose doctor and then to an infectologist. I did the full blood test, and my WBC were below the minimum and I had neutropenia. Infectologist said that some virus ran through me, so according to her it was all pretty normal, more or less... After a month of slowly recovering, eventually the dizziness went away (after they gave me Betahistin dihydrochloride)... I still felt like I had trouble when walking a little with the balance... But I was feeling better compared to a month before, no throwing up, no nothing, all this time I didn't have fever, I didn't have night sweats, swollen glands... So we did another full blood count just to make sure that everything is in order, and this time the WBC were exactly like the first time, below the minimum, so the infectologist suggested that I should get tested for Hep A and Hep B... Aaand she asked me if I would agree to get tested for HIV too? And I said yeah, why not, as if I had a choice... But I only agreed cause I thought there's no way I can have it, I thought okay I should get tested at least once in my lifetime and just get over it. And well, the results came back positive for HIV... I don't know how I didn't kill myself then... I wasn't even crying or anything.. I just couldn't believe its happening to me.. I thought I was in a movie... Then I went to get another test, the Western blot, that one came back positive as well, and well that was it... The doctors kept telling me its nothing, that it's a chronic condition that I'll be fine... I just felt like my whole world crashed down... I was like a zombie (I still kinda am). Suddenly all the plans, ideas I had about life disappeared, I don't even know how I managed to keep going to do more tests as it was nothing, I guess I still didn't realize what was going on. And so, I did the CD4 test the results came back and it was 9! I still didn't get it. The doctor asked me if I know that technically this is AIDS, at the time I knew nothing about CD4 counts, so I had almost no reaction to it, and she wanted me to start the therapy right away, the same day. I'm on Kivexa (abacavir/lamivudin) and Stocrin/Sustiva (efavirenz). I had no side affects in the first week.. Well the first night was terrible, but I think I was more scared then it was the reaction from the meds. After that I just kept crying and crying I think I cried for the whole month day and night, I was just reading everything I could find online about HIV and crying and crying and crying... Thing is.. I was never really afraid of dying in this sense that life will just stop at one moment, I'm okay with this.. I accepted long time ago that you are born and that you might get hit by a bus the next day, and I think I lived like that, I was trying to be present in each moment as much as I could and just be happy about being here now.. and somehow I was always the one who was making other people feeling good about them selves and I was the one who kept saying life is beautiful and nothing is impossible and then.. this. Suddenly I have to think about the meds, the insurance, the bureaucracy... I just turned 30, and this was the worst birthday ever definitely... I'm trying to get my Master's degree, I have thesis left to do.. and it's kinda hard if I spend most of my days crying or googling for hiv cure... Every morning when I wake up, the first thing do, I google 'hiv cure' I know it's not around the corner... and I don't know when and if it's going to happen, but some days it's the only thing I can do, just read about it... and yeah maybe cry a little.. then read.. then cry again... Well I guess I am crying a lot lately... What my problem is - is that in my country where I am being treated you can get only one month supply of meds, and this is the terrible thing for me, that means my plans for the future are over! I managed to get enrolled into social security system here in Italy where I'm finishing my Master's, but its kinda same thing here, they give meds only for 2 months... So yeah I have no idea what the future brings for me, I had an idea about immigrating to USA before (I already lived there) but now without the meds, and without the medical insurance there its almost impossible or it would be a total suicide I think... I don't know.. I guess I'm stuck in this 'limbo' now, it's kinda sad, I should be working really hard to finish my university to have a future, but then I just say to myself - what future? Oh and the last test was CD4 - 89 and PCR (viral load) - 60 (this was after 3 months of therapy) so I guess I am getting better  physically... Hopefully I'll get above 200 with this combination that I'm on right now, I read somewhere here that it's not really the best one for those with low CD4... I'm not even sure other options are available in my country (Serbia)...
Well, that's pretty much it for my first post here, I apologize for being too long and confusing. I wish all the best to all of you here! X

Online Joe K

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Re: HIV+ CD4 9
« Reply #1 on: April 06, 2014, 09:15:47 PM »
Hello Mirko,

Before I offer my response, I would ask that you use paragraphs in your posts, as reading an entire wall of text, with no breaks is almost impossible.  Some members have vision issues and may not be able to respond, due to their inability to read your entire post.

I am so sorry that you have tested poz, but glad you found your way to us.  The first thing that hits me about your issues is that you are taking Sustiva, which can cause many psychological issues and is most probably the cause of your crying episodes.  I would urge you to consult with your doctor and choose another drug that does not contain Sustiva and I believe your quality of life will dramatically improve.

You also need to give it time for the meds to work.  Your numbers are improving and that is what we want to see, but it takes time to recover from such low counts.  Hopefully you will continue to improve and by removing the Sustiva, your ability to complete your Masters work should be much easier.

Welcome to the forums.

Joe

Offline mecch

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  • red pill? or blue pill?
Re: HIV+ CD4 9
« Reply #2 on: April 06, 2014, 09:18:12 PM »
Welcome.
Eventually you'll have a different perspective on all the ambitions you should still pursue in your life.
Maybe its best to concentrate on improving your daily life now. And getting that thesis done and approved. 
So you are in Italy and for awhile?  Is your treating doctor now Italian and your med supply Italian, or still Serbian?
I ask because you say you are on a crying jag for a long time.. How long has it been? What about the possibility that you may be clinically depressed?  Have you had any support with this diagnosis? 
You might want to look into getting off the stocrin.  It's doesn't play well with depression and can even cause depression and the kind of ruminative thinking you are reporting...
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: HIV+ CD4 9
« Reply #3 on: April 06, 2014, 09:19:04 PM »
Ah, I see Joe K had the same reaction...  ;D
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Mirko

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Re: HIV+ CD4 9
« Reply #4 on: April 06, 2014, 10:00:36 PM »
Oh ok, I apologize for the paragraph thing.

I kinda just started writing it, I didn't mean to make it a novel but couldn't stop myself half way through it. I'm still kinda new with this forum thing and everything.

I have a doctor in Serbia and just got one in Italy, I brought some meds with me here, and I'll be getting the meds bere as well. I've been in Italy for two and a half years now.

It's been around three months now since I tested positive. It was when I went back home in between semesters. I picked myself up somehow and decided to go back to Italy and try to finish what I started. I did tell a few close friends, still didn't tell members of my family, don't know when and how exactly.

I did the crying thing in the first month mostly. But I guess it was because I didn't know anything about hiv, so I thought it was game over for me.

Now, I guess I'm ok, I still have these 'what if' and 'scared of future' moments but I don't think I'm clinically depressed, I guess its just normal, its hard to kinda get yourself going if you don't really know what's ahead of you.

Maybe it's because I just turned 30. And life's not really how I imagined it to be  :D

Thanks for replying.



Offline xinyuan

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Re: HIV+ CD4 9
« Reply #5 on: April 06, 2014, 10:20:08 PM »
Wall of text describes my first impression as well ...

*ahem*

Sorry about your recent diagnosis and that you need these forums. Welcome and glad that you found these forums.

From what I've gathered reading, Stocrin/Sustiva causes mood swings and psychiatric issues. I would definitely discuss with your doctor about switching that out.

I admit that I'm unfamiliar with the medical systems in Italy and Serbia. If they are socialized, shouldn't access to medications not be a problem? I also hope the doctors are covering you for opportunistic infections and monitoring for immune reconsititution issues, until your CD4 climbs high enough. You are respond to medications. So, that is good.

As for crying and feeling depressed, those are expected reactions. If you didn't react emotionally, that would be worrisome. When the depression is prolonged or leads to suicidal thoughts, that would be far more worrisome. In that case, then one should seek help.

4-5 months in, I can say things are sort of normal with work. Even then, my therapist said that it could take 1-2 years before a complete sense of normal comes back.

You have friends to talk to. That is good. As for family, help yourself first before you find yourself ready to help others.

You are so close to finishing your thesis and your Masters.

I'm sounding like a broken record on these forums. But please.

Take one day at a time.

Offline tednlou2

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Re: HIV+ CD4 9
« Reply #6 on: April 07, 2014, 01:29:31 AM »
Wanted to welcome you to the forum.  It is so great you and the docs kept pursuing what was wrong.  Don't apologize for writing a "novel."  You have a lot to say, and it helps us get to know you and your situation. 

I look forward to hearing more from you.  For myself, being hit with my mortality at a young age (I was about your age) was a huge assault to the mind.  It was so hard to believe.  I would have dreams that it was all a dream.  A bad dream.  If you need to talk, we are here to listen and for support. 

Take care,

Ted

Offline Mirko

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  • Posts: 4
Re: HIV+ CD4 9
« Reply #7 on: April 08, 2014, 07:53:30 PM »
Hey thank you all for the replies.

Well, yeah I got the meds and everything, the problem is that you have to go get new meds every 30 days in Serbia and every 2 months here in Italy. I read somewhere that in some countries you can actually get a six month supply or a even for a year.

Ok, yeah I get it, since my CD4 number is really low, I should be seeing doctors more often, so I kinda understand. Thing is, I'm thinking I'll be prefectly fine with Hiv and everything, I'm afraid bureaucracy is going to get me before the virus does.

As far as for OI goes, I'm covered there too.
I'm taking 'sulfametoxsazol/trimethoprime' (Bactrim) three times a week. Good thing about everything is that I'm completely symptom free, no fever, no rash, no night sweats, I didn't lose weight... The only thing that was different, one of my finger-nails turned a little bit yelowish, but the doctor said it has nothing to do with the Hiv infection. I don't smoke, I don't drink, I don't do drugs.

As far as the crying thing goes, well, I'm not suicidal, I'm actually very optimistic.
What my problem is being dependent on the country health system. And the health system is far from perfect. Another thing is that now I have to plan everything month by month, in order to have enough meds. Or if I'm planning to go live in another country, now I have to think about the health insurance there and everything. (And so far this seems like a pretty impossible thing to do).

Everything is still pretty much the same, only now with Hiv it's 10 times harder.

I don't know, I think the crying thing every now and then is ok. What other reaction I should have? At least I'm not mad at the world, or at the person who passed this to me. I think I'm pretty rational. I got all the information, now I just need to take care of myself and others.

And that's it. It's far from being clinically depressed I would say. I guess it's also different if you live with Hiv somewhere in the USA or in Western Europe than it is in a country like Serbia, that has a health system that is far from perfect. And where people who are living with this are still stigmatized and marginalized. Even by some doctors and medical personal. Most of the time you feel like a criminal. Even when you are going to the pharmacy to get the meds.

I guess I'm just worried about my future, which is again a normal thing I think.

One step closer to finding some solutions for my situation is posting here as well, and sharing my experience. A lot of the posts I've been reading here berfore helped me a lot to get through the day sometimes. Again, I think it's not the same just finding out that you are positive, and finding out in the same week that you technically already have Aids and starting the therapy.. and dealing with all of that at once.

Another thing is, that I have no idea how I got it, it's not like I was playing Russian roulette with my life. I had around 15 in total sexual encounters in my life. I'm not really a sexual person. I need a lot I think to actually get going with it, I think I was having like one 'encounter' per year on average. Yeah I guess it sounds stupid. And it was always like, ok let's get this over with it, so I can get back to doing something else.

I always used protection, except that one time. And I guess that one time was enough for me. Doctor told me, when I told her about my sex life and everything, that the chances of me contracting the virus were 0,1 BUT somebody had to be that 1, that's what she said. Not really comforting words right? 

Actually I think I was quite brave, for not throwing myself under a bus or something during that first month.

Oh yea, I just remembered, I had shingles, about a month ago, although it didn't really itch or hurt. I took acyclovir for a week, just as a prevention as the doctor said, according to her, it didn't look bad at all. At first I thought it's just a sweat rash from sitting, I just showed it to the her, I thought it could be worth mentioning, as I was't really sure what it is. And the doctor seemed quite happy, as this is a sign that the immune system is waking up (according to her).

Also, some of my friends told me I have never looked healthier (?!?) and I noticed my hair is getting thicker (I think).

So yeah, that's it for now, hope I'll make it through, although I read somewhere that the first year is crucial for people with really low CD4, apparently some people don't make it through the first year. (Well, yeah maybe this is one of the reasons I used to cry all the time, I just kept reading things like this ALL the time online). But then again, I meet people at the clinic who started with 0 CD4 and made it through, and they look perfectly fine today, some of them are more then ten years in therapy.

Sorry for all the random thoughts here, my mind is all over the place with this.

Thanks for reading and replying, and hopefully I'll be updating you with some great news here!

Cheers and take care all of you!

Offline muratti

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Re: HIV+ CD4 9
« Reply #8 on: April 08, 2014, 08:29:36 PM »
u r brave balkan guy:)
croatian here..we are not so brave..:)
me tested poz 3 weeks ago ..i am still in limbo.

Offline mecch

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Re: HIV+ CD4 9
« Reply #9 on: April 09, 2014, 04:03:08 PM »
What country gives 6 months or a year of treatment!?   ;D Dang.

A lot of us are in the same boat about treatment supply.  What people do, who want extra reserve, for whatever reason, is slowly build up a reserve.  Fill the prescription as soon as possible. Circulate the oldest drugs to the front to take them before they are expired.


« Last Edit: April 09, 2014, 04:06:50 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline drewm

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Re: HIV+ CD4 9
« Reply #10 on: April 09, 2014, 04:13:40 PM »
Hello and welcome. Agree with Joe, please use paragraphs  ;) Your story sounds somewhat like mine. I found out I had full blown AIDS cd 4 was 8 and vl was 500,000 after losing consciousness in my front yard. Sounds from your latest numbers like you are on a decent rebound.

Here is some good news. Life does, indeed, go on. I am just at 4 years into this post hospitalization and diagnoses and most days this virus is the last thing on my mind. It took awhile to get to the realization that it is a chronic disease, no longer a death sentence. Please keep us posted. Glad you found us!
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 pittman

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Re: HIV+ CD4 9
« Reply #11 on: April 09, 2014, 11:19:31 PM »
So can you explain your concern over only getting a month or two's supply of meds at a time?

My frame of reference is that I can only get 30 days worth from a walk-in pharmacy, or I can get a 90 day supply from a mail order pharmacy. In the U.S. that is pretty typical, even for long term chronic conditions.  I have managed to slowly build up a reserve over time by refilling on the very first day I can.

Also, the U.S. no longer has travel restrictions for HIV+ individuals. As long as you get health insurance though work or by buying it, you should be fine. As we do not have the same concept of universal health care as many other countries, that would be well advised for anyone in the U.S. and not just those who have some condition. An accident can happen to anyone leaving you in need of medical care.

Give yourself some time to adjust. At age 30, you should be planning for a long life ahead of you, and HIV will not be the big limiting factor you perceive it to be now.


Offline Mirko

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Re: HIV+ CD4 9
« Reply #12 on: April 10, 2014, 09:10:56 PM »
Well, I guess my problem is that I want everything and I want it now  :D

90 day supply sounds just fine to me. I heard that in Croatia you get 6 month supply, and I think all the Scandinavian countries provide you with a year supply or even mail it to you if you're living somewhere abroad. I actually read this somewhere here on the forum.

My concern is that if, ehm, let's say the world is one big global village today and if tomorrow or idk when I get a job offer from let's say China, I'll have to probably refuse it, if I'm not covered with meds. Same with the states, I was actually getting ready to go there last year, but now I have no idea how I'm I going to pull it off. Or even if I go as a student, I have no idea how it works for students... Oh well...

And then, the major concern would be, who would hire me if they would find out that I'm +. So, the reality is like this - there is treatment right now available (on this planet) but to get to it, you need to deal with whole a lot of bureaucracy, and just be happy with what ever they give you.

I mean, yeah, I know, I should be thankful, that at least I am getting treatment, especially if I know that there are people somewhere who can't get it at all. I guess this whole HIV thing just made me think more about the world we live in.

Yeah, yeah, I know, one step at a time... But... I just feel trapped. I'm afraid I'll be stuck here in Italy or Serbia till the rest of my life, hating it, just because this is where I'm getting my treatment.

I was reading somewhere online that there should be this thing called universal access for + people (somewhere in the near future) and that it should be possible to get treatment anytime anywhere, since it's now a 'chronic' condition.

What about buying generic meds online from India? Is that a crazy/stupid thing to do?

Live long and prosper everyone!




Offline pittman

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Re: HIV+ CD4 9
« Reply #13 on: April 10, 2014, 09:58:09 PM »
I can't speak for China, but in the U.S. full time jobs generally come with health benefits, it's illegal to not hire based on HIV status, and there is no need or requirement to disclose status to an employer.

 


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