Simply terrifying. Blood test = HIV +

[hiv_rizzy]

 

I've been around the forum for less than a week now and I must say I like a lot of the topics and seeing the wonderful progress made by persons living with hiv.

For months I've been suffering from a bad cough due to my sinus drain getting worse for reasons I didn't know. I got various meds to help make my sinus better and they all do only temporary relief. It's been like that for months until I decided to go the doc in April(last month) and check it out for good why I've been getting such serious sinus drains which leads to coughing.... She recommended a few new generations of antihistamines that says would probably work but I wanted more than that... I was concerned that I should do a full blood test and scans etc to find out if I'm healthy all over.. After a week at the lab my tests came back on April 26th (red blood cells count, diabetes test among others) except my hiv elisa result which was withheld.. My doc followed up with the lab for the complete result and after sitting me down in the room and asking me a couple questions as to when last I've had unprotected sex and taken an hiv test, he broke the sad news that I was discovered to be positive. I sat down in the chair totally blanked out and my eyes popping looking at the walls and I could hardly hear what else he was saying to me at that moment. I was in a completely different world. I felt the urge the cry but the shock alone cause me to not shed one tear.
After slowly coming back to reality, the doc keep telling me it's not a death sentence and that I can live a long and happy life. At that time I didnt think he was quite serious although advances have been made in hiv treatment over the years. I didnt know how far they have come and how good they work. All was going through my head is that I'm going to die soon. I left the office that day with no expression but was deeply angry with myself for having unprotected sex one and two times outside my currently relationship (together for over a year)
Reaching home seems to be when the news started to sink in and I broke down in tears and fearful of what my life is going to be like in time to come. I immediately got a massive headache when I remember Ive had unprotected sex more than once with my partner over the 1 year period!! How will I explain this!   I also began to worry about who else I might have infected and how will I tell them this horrible thing. 
From that night (April 26th) I decided that I will get online and do research about this virus and  and try to find support the way of treatment news, advances , talking to professionals and visiting my local aids support foundation for information and how to proceed from here. Just a few days after I broke the news to my partner.
Anger, fear, disappointment, suicide thoughts came into play as there are high chances that I gave him hiv. He broke down over the phone and I tried my ever best to beg for forgiveness. It was my recklessness that caused this. I cheated and I didn't use a condom 100% of the time.... I feel so damn stupid. Fast forward just over two weeks now my relationship is still alive. My partner forgave me and I'm so grateful and insist he will stick with me whether or not he is test positive (which will be soon). My blood samples are sent to the labs for genotype and other testing including my cd4 status and viral loads which I expect could be pretty high. I haven't done a hiv test in at least two years and I've not been consistent with using a condom all the time during sexual encounters. I'm fearful that my cd4 might be low based on it being some long I haven't done a hiv test meaning I don't know when Ive actually been infected. I constantly have night chills and joint pains especially after the DX. I'm awating the results and I've informed all other persons I've had sex with over the last two years to do a blood test. Quite a few have been supportive so far and I must say I also give thanks for the support of my boyfriend and hope I can spend the rest of my life showing him I'm sorry for all of this.
Blood test results should be available the next week or the following week the latest. Hoping that the result won't be devastated and that I cant start treatment ASAP  along with finding out the status of my boyfriend and others involved.

I will keep all updates here. So far POZ forum and main website has been a tower of strength that all is not lost. Thanks to all those I've spoken to so far.  thanks for all our kind words

[CaveyUK]

Hi Rizzy - sorry to hear your diagnosis, but glad you found us

You've already acquainted yourself with the forums so know the kind of support you will get here so I don't need to tell you that.

On the plus side - if your last neg test was 2 years ago, it is unlikely your numbers will be that bad, but once you have the full picture you can start treatment and get back to (relative) normality.

Keep us posted

[hiv_rizzy]

Hi Rizzy - sorry to hear your diagnosis, but glad you found us

You've already acquainted yourself with the forums so know the kind of support you will get here so I don't need to tell you that.

On the plus side - if your last neg test was 2 years ago, it is unlikely your numbers will be that bad, but once you have the full picture you can start treatment and get back to (relative) normality.

Keep us posted

thanks. I'm so anxious to know how bad is it now. I think the process is quite slow with having to wait two weeks. Time seems to slow down as I'm counting down the days

[rookie72]

Yes this forum is great
I am recently diagnosed as well.
People on this forum are great and you will forget about this bug and live an awesome life.

Yes it can be a slow process with getting bloods done and waiting for results. I am in the same boat and waiting for my bloodtests. This will determine what meds I will take.

Remember the one big side effect from taking your medication...."You Live!"
Enjoy life to the max!

[CaveyUK]

thanks. I'm so anxious to know how bad is it now.

I was the same, but really there is no 'bad' number, as once you know it you can actively do something to recover it. One thing about recent thinking around treatment is that you treat HIV exactly the same if you have a high CD4 count as you do with a low one.

The key thing is that you know you are HIV+, which is actually the hard bit. Everything else is about getting on treatment and getting you back to normal (albeit a 'new' normal)

[hiv_rizzy]

Yes this forum is great
I am recently diagnosed as well.
People on this forum are great and you will forget about this bug and live an awesome life.

Yes it can be a slow process with getting bloods done and waiting for results. I am in the same boat and waiting for my bloodtests. This will determine what meds I will take.

Remember the one big side effect from taking your medication...."You Live!"
Enjoy life to the max!

Yes indeed and treatment will be getting better and better as the years go by!! We will probably get functional or total cure soon enough based on the massive research Im seeing. I think hiv research is greatly underfunded though. 100 million for cure research?? Why not 100 billion into research. Politics I tell yah

[hiv_rizzy]

 
My close aunt (Basically my mom as I grew up with her) was diagnosed with cancer yesterday. It's taking a toll on me and I don't want it to make things complicated with my health. I need help and support. I need to talk to you guys. Please send me a PM

[Matland]

Life Works on this way. Cancer is very common and everyone know at least one person Who is very close with cancer. So it must be very sad for you. On the Other hand What is tought in medicine schools here is there is no illness there is patient. Ilnesses are depended on patient. I mean, some people May overcome cancer very successfully with good attitude. Psychology is very important. And the patient should convince himself first that yes i can do. And you must support your aunt as much as you can. My advise is that you should spend time with her more. And She should feel your support. Please do not seem to her depressed or sad. Strenght is the key Word here i think.

[hiv_rizzy]

This colon cancer is very bad they say it has spread to the liver and kidney so treatment won't save her. How true is this to anyone here who understands cancer? Anyways I'm keeping strong for her and myself. I can't afford to break down with this hiv inside me. I'm so anxious to start my meds now.

[xunil]

You can break down right now...  It's okay and isn't going to affect your health long term at all.  Your story reminds me of my situation although I was on the other side of the relationship (I was cheated on).  You're going to be fine, and just live your life.  You'll start meds soon and everything will get sorted out real quick.  In most cases with the newer medications your viral load will be undetectable after a month of starting medications and your CD4 will rebound over time.  Just live your life and be with your family and don't be worried about what the virus is doing right now, whatever it is doing will be undone quickly when you start treatment.  I'm sorry to hear about everything you're going through and I hope things get better.

[hiv_rizzy]

You can break down right now...  It's okay and isn't going to affect your health long term at all.  Your story reminds me of my situation although I was on the other side of the relationship (I was cheated on).  You're going to be fine, and just live your life.  You'll start meds soon and everything will get sorted out real quick.  In most cases with the newer medications your viral load will be undetectable after a month of starting medications and your CD4 will rebound over time.  Just live your life and be with your family and don't be worried about what the virus is doing right now, whatever it is doing will be undone quickly when you start treatment.  I'm sorry to hear about everything you're going through and I hope things get better.

Thanks. I'm still waiting on my lab tests I'm so anxious to get going with meds. Seems like the lab was shut down for a week for A/C repairs which has delaying my results. So not in luck for sure. Stilling waiting and hoping. I will update accordingly

[hiv_rizzy]

New Update! 
I'm so pissed! After thinking the lab started operation may13th as they announced, I was told today that operation will be resuming tomorrow May 25!! In total the lab has been closed for almost  3 weeks. Now I'm left to wait atleast 2 weeks more before the hiv organization can get my result so I can be placed on treatment! I've been so anxiously waiting to start life saving treatment! Each day go by this darn virus is spreading inside me and I can't do anything to stop it!
If only I went with a private lab and pay some money instead of that stupid free gov lab that is putting my health at greater risk by delaying my treatment. Now it wouldn't make sense going to private lab when I still would have to wait two weeks to get my full results.

Why do my fate seem so bad? I want to be treated for crying out loud!! Everyday I'm sure my immune system could be getting weaker. I'm certainly not feeling great generally 

I hate this third world country. (Jamaica) If they cared about hiv + persons they would have sent the blood samples to another lab so as to prevent massive delay in results. I'm surely not the only one that has been affected.

This is my life now. Frustrated and discouraged. How much years will I have to wait? Ugggggggggghhhhhhhhh!!

[Matland]

Ok dont panic!!
Hiv Doesn't progress Quickly. Some people are Diagnosed years after they were enfected. And they are still doing very well. You dont kose anything with Just one month. Otherwise they would keep you at hospital. Try to go another lab if you have that choice. For example the first hospital i went first told me to come the day after and i went to another one. Just in a week all my procedures were done and started treatment. Ok here we are lucky because our main hospitals are located side by side. And 4 big public hospitals are almost in the same campus. Try to another choices, you dont have to wait for this lab.

[hiv_rizzy]

Ok dont panic!!
Hiv Doesn't progress Quickly. Some people are Diagnosed years after they were enfected. And they are still doing very well. You dont kose anything with Just one month. Otherwise they would keep you at hospital. Try to go another lab if you have that choice. For example the first hospital i went first told me to come the day after and i went to another one. Just in a week all my procedures were done and started treatment. Ok here we are lucky because our main hospitals are located side by side. And 4 big public hospitals are almost in the same campus. Try to another choices, you dont have to wait for this lab.

The other labs out here will require me to wait atleast 10 days so it makes sense I just relax as much as possible and wait for this one. I already gave up 7 test tubes of blood. It's not something I like doing at all especially weeks apart. I hate needles and seeing blood. I know I will have to eventually get use to it

[CaveyUK]

My cd4 was so low at diagnosis (160) that they put me on septrim (co-trimoxazole also known as Bactrim) as a precaution and asked me to wait two further weeks before starting ARV treatment. That was to ensure they could easily work out which drugs had side effects, if any were seen.

That 2 weeks seemed to take AN AGE and like yourself, I was mentally building up an image of HIV continuing to wreak havoc and my immune system collapsing bit by bit.

In the big scheme of things it really isn't that quick, and CD4 tests themselves can be a bit unreliable and read high or low based on a number of things, including time of day.

The worry was for nothing. Eventually, when starting treatment it still got the VL down quickly and allowed my body to pump up the cd4 count.

You may be waiting a little longer, but right now you don't know what your starting position is. It may be much much better than mine.

So don't panic!!

[Mints22]

Hey bud,
i am recently diagnosed as well. And during my diagnosis i had a lot happen. For one the day of my diagnosis i had my grandmothers wake(she died from brain cancer) as well as  my girlfriend, well now ex girlfriend, broke up with me. i had gotten a blood test last june and nothing had came up, and was with one girl in between me and my recent ex, and then i only got an std test(only a pee test) in september so 3 months after my blood test and everything was fine. I had no symtoms and i decided to get a full check again in april and it came back hiv+. You could only imagine the shock that i was in. Naturally my gf was angry with me, but thank god she got tested and was negative. Although she didnt want to be with me anymore. So in a month i got this diagnosis lost my grandmother and lost my girlfriend. And then i had to wait 3 weeks like you for my rna viral load test to come back and i was stressed about it but at this point you know you have it its just a matter of getting the right medicine. When my test came back my vl was 50000 and my cd4 count was at 162. So my doctor put me on bactrim to prevent an infection, and im on triumeq for my anti retroviral medicine. I go back the first week in july to see what my vl and cd4s are at. But for me its all about your mindset, you cant change anything, but only move forward and focus on yourself first. Everybody on here has their own experience and i know that everyone will agree that the key to overcoming it is a positive attitude with a positive attitude you can overcome anything. After talking to my doctor and reaching out with all the great support on this forum there is A LOT of hope. the medicines can get you undetectable and thats what im striving for now, which means theres very little chance of passing it onto someone else. The worst part of all of this, atleast for me is the loss of my girlfriend in the end she couldnt stick around, which is her loss, because im still the same person and so are you. This doesnt define you its only going to make you stronger. Ive been taking my pill for almost 3 weeks now and its just like taking a vitamin in the morning and its really the only reminder that i have the virus. You are going to be alright. And i just wanted to share my story with you and hopefully this helps as everyone on this forum has helped me and has their own experience, you are not alone in this. Keep your head up, take it day by day, and you are going to be alright.

"As frightening as it can be, that pain will make you stronger. If you allow yourself to feel it, embrace it, it will make you more powerful than you ever imagined. It's the greatest gift we have: to bear pain without breaking. And it comes from the most human part of us: hope"

[hiv_rizzy]

My cd4 was so low at diagnosis (160) that they put me on septrim (co-trimoxazole also known as Bactrim) as a precaution and asked me to wait two further weeks before starting ARV treatment. That was to ensure they could easily work out which drugs had side effects, if any were seen.

That 2 weeks seemed to take AN AGE and like yourself, I was mentally building up an image of HIV continuing to wreak havoc and my immune system collapsing bit by bit.

In the big scheme of things it really isn't that quick, and CD4 tests themselves can be a bit unreliable and read high or low based on a number of things, including time of day.

The worry was for nothing. Eventually, when starting treatment it still got the VL down quickly and allowed my body to pump up the cd4 count.

You may be waiting a little longer, but right now you don't know what your starting position is. It may be much much better than mine.

So don't panic!!

Thank you so much but that's is the worrying part. I don't know my potential numbers which could be terrible. I want to know where I stand. Thanks for sharing your story!! You are a tower of strength. Quite motivating. 

Hey bud,
i am recently diagnosed as well. And during my diagnosis i had a lot happen. For one the day of my diagnosis i had my grandmothers wake(she died from brain cancer) as well as  my girlfriend, well now ex girlfriend, broke up with me. i had gotten a blood test last june and nothing had came up, and was with one girl in between me and my recent ex, and then i only got an std test(only a pee test) in september so 3 months after my blood test and everything was fine. I had no symtoms and i decided to get a full check again in april and it came back hiv+. You could only imagine the shock that i was in. Naturally my gf was angry with me, but thank god she got tested and was negative. Although she didnt want to be with me anymore. So in a month i got this diagnosis lost my grandmother and lost my girlfriend. And then i had to wait 3 weeks like you for my rna viral load test to come back and i was stressed about it but at this point you know you have it its just a matter of getting the right medicine. When my test came back my vl was 50000 and my cd4 count was at 162. So my doctor put me on bactrim to prevent an infection, and im on triumeq for my anti retroviral medicine. I go back the first week in july to see what my vl and cd4s are at. But for me its all about your mindset, you cant change anything, but only move forward and focus on yourself first. Everybody on here has their own experience and i know that everyone will agree that the key to overcoming it is a positive attitude with a positive attitude you can overcome anything. After talking to my doctor and reaching out with all the great support on this forum there is A LOT of hope. the medicines can get you undetectable and thats what im striving for now, which means theres very little chance of passing it onto someone else. The worst part of all of this, atleast for me is the loss of my girlfriend in the end she couldnt stick around, which is her loss, because im still the same person and so are you. This doesnt define you its only going to make you stronger. Ive been taking my pill for almost 3 weeks now and its just like taking a vitamin in the morning and its really the only reminder that i have the virus. You are going to be alright. And i just wanted to share my story with you and hopefully this helps as everyone on this forum has helped me and has their own experience, you are not alone in this. Keep your head up, take it day by day, and you are going to be alright.

"As frightening as it can be, that pain will make you stronger. If you allow yourself to feel it, embrace it, it will make you more powerful than you ever imagined. It's the greatest gift we have: to bear pain without breaking. And it comes from the most human part of us: hope"

Wow thank you so much!! Tears came to my eyes while reading your story. We are all in this together for a lifetime. I surely won't give up on life. I appreciate the support from you guys. Trust me it goes a long way

[hiv_rizzy]

Ok finally I'm back with some form of update. Miss you guys by the way!

So I was called monday to go in and discuss the results this evening (tues) but I had work and the notice was too short. I will have to wait till next tuesday when they have a next clinic that deals with treatment etc. Anyways, over the phone I was told that my cd4 numbers were pretty good so I need not to be anxious. Bad news tho.... I'm 'too healthy' to start treatment. She didn't tell me my cd4 number over the phone as that should be in person but she said currently in Jamaica the cd4 should be lower than 450 before they can start putting me on treatment. I was like shocked because initially the psychologist from the same institution told me in may that I would be starting treatment once the results are in after we discussed the WHO post start trial recommendation sent out last year. I told her that I don't want to wait till I'm being affected by the virus before actually stopping it in its track so I want to weigh my other options as it relates to doing it privately or whatever.

What do you guys think about all of this?

Next week tuesday I will be going in to the session where I can properly be informed of my next possible moves etc. Probably they will be doing a next blood draw to track the progress as well.

In other news as well my boyfriend is NEGATIVE. Yayyy. Although we had unprotected sex like 4 times he didn't get the virus from me. I feel relieved as I have less to worry about also He is still giving me all the emotional support I need. Love him so much

[hiv_rizzy]

update:
my aunt passed away earlier this evening. The cancer really took over her body and her condition got worse each day. She was only admitted to the hospital since Thursday as she was having major problems breathing.  all this come at a time when I'm having my own challenges. Life has been terrible to me since year. I dont know if I will survive all of this pain

[CaveyUK]

Sorry to hear about your aunt.

As for not surviving all this pain...well, you will. And your numbers are good, so really you just need to get everything into perspective, especially with your relative passing.

As for your previous question about starting treatment.... The common modern thinking is that everyone should start medication at any CD4 count (no matter how 'good') as not only does it stop the virus from doing any further damage but it also prevents you from passing the virus on.

Unfortunately, not everywhere takes this approach yet. Even in the UK, I've heard reports of people diagnosed but told they can't start meds yet, despite other areas starting people straight away. It is a bit of a lottery really, and other than talking to your doctor, asking the question and appealing to their better judgement there may not be that much you can do.

The good news is that with the good CD4 count you are not in imminent danger, and just a few years ago the approach they are taking would have been normal.

If I were you I would talk to the doctor, point out the latest scientific thinking, talk about wanting to protect your partner (or others) from being infected and the psychological boost you would get from becoming undetectable and ask if there is any way you can start treatment now. You never know until you ask...

[Tonny2]

         ojo        Hello rizzy....I'm sorry for your loss, please be strong, now, finally she is resting in peace, cancer is tough, my friend, you remember?, he is back at the hospital, some complications, but, this is life, some people go before us all the time....now, it's time to concentrate in your dx, your aunt/mom, will be with you all the time, that's why I call, "resurrection", as long as you keep her on your mindm she will be with you for eternity, again, please be strong...big bear hug on your way           ojo

[hiv_rizzy]

Terrible
Terrible news
The info provided by the someone at the aids organization was DEAD WRONG. I do not have a good cd4 level. WTF!

Results are cd4: 16! Viral load 13,027. I almost pissed my pants when the hiv specialist doc was telling me my results. That could not be right! Could I really progressed that quickly esp the fact that I was  tested negative around 2 years ago?

[hiv_rizzy]

Otherwise from the bad numbers I was told that will I be placed on Atripla and Mycosyst (take for 14 days to prevent fungal infection). I got my first 2 bottles of hiv meds after leaving with the Rx. 1st bottle 30pills(Tenofovir/Lamivudine) 2nd bottle 30pills(Efavirenz). The pharmacist said they didn't have the one pill version in stock so I have to take one of each. I've been here and read how many person in the first world are coming off Atripla I'm worried that I'm not getting the latest and best regimen because of my 3rd world country*  well atleast they give us for free*. Tonight I will take the first hiv/aids pills in my life and I'm so nervous.
side effects listing is worrying me and my cd4 count. I have full blown aids!! 

[gorka]

Sorry to hear that Rizzy.  Maybe you should ask them to do the test again.  The good news you are starting meds and things will improve soon

[Jim Allen]

Hi

You asked for my input so here it is, I am sorry to hear the numbers.
I also sent you a PM back but for the benefit of the thread my thoughts are I would start the treatment.

"Atripla" combination is widely used by millions daily. It might not be as new as some drugs but it is an effective treatment that will  suppress the virus so your system can start rebuilding. Now if at some stage something newer becomes available to you than you can review the situation, but if this is the option in the meantime that you have, than this is what you need to take.

Start the meds. You will be okay. Try not to overthink the numbers for the moment.

I have full blown aids!! 

"full blown" sounds bad, if your full blown what than is a "a bit of AIDS " or "half blown AIDS" ? From my perspective (My part of the world at least) your numbers it is still not yet considered AIDS, don't get me wrong I am not saying its a picnic either.  Don't take me wrong I get that the numbers are a shock to you but try not to overthink this or stress on the "AIDS" part that is what I am trying to say.

I understand you are upset/shocked but start the meds. You will be okay, keep to your appointments, did they mention when your next due back ? Did they take more bloods during this latest visit for new labs ?

Jim

[Tonny2]

            ojo          Hello rizzi....sorry for the news, now, start your treatment as soon as possible...I know lots of people who are taking same combination you will take, they are doing great, most of them in Latin America...I was declared full blown aids in 1994, when hiv was a death sentence, I'm still here, now meds are better, so relax, just take care of yourself and you will be fine, be strong...keep us posted...big bear hug on your way, you need it  ;p                                                                                     ojo

[CaveyUK]

Hey Rizzi. Shock about the numbers huh? I can imagine!

So get this "full blown" thing out of the way first. There is no such thing.

Positives...

You haven't got an OI
You can start treatment immediately
Atripla is a proven regimen
Your VL isn't particularly high. The meds will sort that quickly
You are now well educated on the condition

If you tested neg 2yrs ago, this is a quick progression which may actually a good thing as under treatment you should bounce back quite rapidly.

That said, your VL not being high, the crazy long delay and the previous message you were given all give pause for thought...for now though there is only one path of action for you - take your meds religiously. You should have a follow up test shortly after starting meds so you will see some progress in your numbers at that point and, well if there is some sort of lab or clinic error you will find that out then too.

Bottom line - your numbers aren't great but it's onwards and upwards from this moment on. You are not at deaths door like many with very low counts and over time things will normalise and you can look forward to a long and healthy life.

Yes there are more modern meds nowadays and you can move onto these in time, but as Jim said - it's used by many many people and is extremely effective in getting things under control. Many people still take Atripla through choice too and have no annoying side effects so bear that in mind too.

It's okay to freak out a bit, but try and stay calm and logical and most of all realise that now you can take control and every thing really is gonna be alright

[hiv_rizzy]

I just took them! Im laying down in bed wondering how my body will respond to the chemicals. will i be in the few that gets severe effects. I hope Im not. So far 20 minutes nothing.

Hi

You asked for my input so here it is, I am sorry to hear the numbers.
I also sent you a PM back but for the benefit of the thread my thoughts are I would start the treatment.

"Atripla" combination is widely used by millions daily. It might not be as new as some drugs but it is an effective treatment that will  suppress the virus so your system can start rebuilding. Now if at some stage something newer becomes available to you than you can review the situation, but if this is the option in the meantime that you have, than this is what you need to take.

Start the meds. You will be okay. Try not to overthink the numbers for the moment.

"full blown" sounds bad, if your full blown what than is a "a bit of AIDS " or "half blown AIDS" ? From my perspective (My part of the world at least) your numbers it is still not yet considered AIDS, don't get me wrong I am not saying its a picnic either.  Don't take me wrong I get that the numbers are a shock to you but try not to overthink this or stress on the "AIDS" part that is what I am trying to say.

I understand you are upset/shocked but start the meds. You will be okay, keep to your appointments, did they mention when your next due back ? Did they take more bloods during this latest visit for new labs ?

Jim

Yes they will do a check up in a month to track the progress of the viral load and cd4 so I will have my blood drawn then. early August. I dont think it would be necessary to take the blood works today since I've not been on any drugs anyways. I'm happy to get your input on Atripla. I feel more relaxed knowing it's a good drug.

Hey Rizzi. Shock about the numbers huh? I can imagine!

So get this "full blown" thing out of the way first. There is no such thing.

Positives...

You haven't got an OI
You can start treatment immediately
Atripla is a proven regimen
Your VL isn't particularly high. The meds will sort that quickly
You are now well educated on the condition

If you tested neg 2yrs ago, this is a quick progression which may actually a good thing as under treatment you should bounce back quite rapidly.

That said, your VL not being high, the crazy long delay and the previous message you were given all give pause for thought...for now though there is only one path of action for you - take your meds religiously. You should have a follow up test shortly after starting meds so you will see some progress in your numbers at that point and, well if there is some sort of lab or clinic error you will find that out then too.

Bottom line - your numbers aren't great but it's onwards and upwards from this moment on. You are not at deaths door like many with very low counts and over time things will normalise and you can look forward to a long and healthy life.

Yes there are more modern meds nowadays and you can move onto these in time, but as Jim said - it's used by many many people and is extremely effective in getting things under control. Many people still take Atripla through choice too and have no annoying side effects so bear that in mind too.

It's okay to freak out a bit, but try and stay calm and logical and most of all realise that now you can take control and every thing really is gonna be alright

Thanks you guys have been great. The hiv meds is in my system now. I'm monitoring for any side effects. Well in a month time when they do a new full test we will see how the numbers look. Yeah I know 13,027 viral load seems minimal for such a cd4. I really don't know what to expect from the next results.  Now I have to pop these pills everyday around 9pm

[CaveyUK]

Were you also given other drugs?

Regional difference may apply, but generally under 200 cd4 usually requires prophylaxis for PCP (co-trimoxazole ie Bactrim/Septrin etc) and for patients under 50 cd4, there should be prophylaxis for MAC (Azithromycin/Clarithromycin).

If you haven't, this may be something you should pick up with your doctor.

Have you also been tested for Syphilis or other STI's? These often go hand-in-hand with HIV and can knock your CD4 count down a bit too.

Glad you have started treatment though. Thats the main thing.

[hiv_rizzy]

I was only given anti fungal meds to prevent fungal infection. I was told they dont offer pcp preventation meds so I probably guess Im on my own with that one. What you guys don't understand is that the same standard is not across the board. I'm in a third world country that doesn't make hiv/aids a top priority. I will have to take that pcp thing up on my own privately but I've already started taking the hiv pills lastnight. BOY! Did i feel drugged. I felt a bit dizzy in the morning like I was up partying all night drinking alcohol... wow.. otherwise I had a slight headache but I don't feel that bad at all!

[Jim Allen]

Hi

Look we understand perfectly that care is not the same in all countries, however what is equally true is everybody here does post for a part based on their own perspectives & experiences, from time to time global or best recommendations come into the conversation. That is a nature of a forum that consists of global members, some of it might not apply to your individual location.

However I also from what you posted know you have been given "no cost to you" medication and its a solid medication used widely. So that is all great news,and it is far better than a lot of people have. Look it does not mean it all rainbows and sunshine either, and i am not saying that, but you in a good position.

Take your meds work through any minor issues as you adapt to this, things will settle in and keep your clinc/doctor posted on any concerns, also make sure to  attend any appointments. Stop stressing.   

Jim

[CaveyUK]

I was only given anti fungal meds to prevent fungal infection. I was told they dont offer pcp preventation meds so I probably guess Im on my own with that one. What you guys don't understand is that the same standard is not across the board. I'm in a third world country that doesn't make hiv/aids a top priority. I will have to take that pcp thing up on my own privately but I've already started taking the hiv pills lastnight. BOY! Did i feel drugged. I felt a bit dizzy in the morning like I was up partying all night drinking alcohol... wow.. otherwise I had a slight headache but I don't feel that bad at all!

The guidelines in Jamaica are the same as most places, when it comes to PCP/Mac prevention meds.

From the health ministry...

http://www.jamaica-nap.org/Treatment%20Care/HIV%20WORKSHOP/OI_Prophylaxis.pdf
http://www.jamaica-nap.org/Treatment%20Care/Jamaica%20treatment%20guidelines.pdf

Not sure of the date on both those above, as they look quite old - but guidelines in 2014 (below) talk about being on PCP prophylaxis for any count under 350...

http://emtctjamaica.org.jm/sites/default/files/downloads/documents/Clinical%20Management%20of%20HIV%20Disease%20Draft%20edited%20%201-13-2014GB_.pdf

Suggest you talk to your clinic again.

For what it's worth, the PCP prophylaxis meds are some of the cheapest generic meds in the world, so I can't imagine they would have a problem prescribing them, especially if your CD4 count is as low as they have told you!

[hiv_rizzy]

The guidelines in Jamaica are the same as most places, when it comes to PCP/Mac prevention meds.

From the health ministry...

http://www.jamaica-nap.org/Treatment%20Care/HIV%20WORKSHOP/OI_Prophylaxis.pdf
http://www.jamaica-nap.org/Treatment%20Care/Jamaica%20treatment%20guidelines.pdf

Not sure of the date on both those above, as they look quite old - but guidelines in 2014 (below) talk about being on PCP prophylaxis for any count under 350...

http://emtctjamaica.org.jm/sites/default/files/downloads/documents/Clinical%20Management%20of%20HIV%20Disease%20Draft%20edited%20%201-13-2014GB_.pdf

Suggest you talk to your clinic again.

For what it's worth, the PCP prophylaxis meds are some of the cheapest generic meds in the world, so I can't imagine they would have a problem prescribing them, especially if your CD4 count is as low as they have told you!

I am tired of all the confusion and going to the clinic. I do have a full time job to balance and I cannot ask for time off! I am still grieving  from m aunt's death plus a funeral to plan. If my hiv doc don't see it fit to add pcp prevention meds to the list of prescription what am I suppose to do now? Go back again like I'm a troublemaker. Stop it. My brain is being overloaded with too much information. I'm day two on atripla and mycosyst now I'm tired of running to the clinic I feel like a bother now plus these are just recommendations. I will see what I can do but all this info overload makes me want to give up. I just want to take meds and feel better

[hiv_rizzy]

Day 2 on Atripla 2 pill version
Dosage starts 9pm
These meds makes me feel drunk in the night (two hours after swallowing)
I sleep quite sound no weird dreams.
I wake up in the morning with a slight hangover feeling(without the headache)
During the day I feel like 'I'm high' a bit cloudy good feeling.
In the evening I start feeling a bit tired than usual (around 7pm) could be from my job

Other pills so far:
fluconazole (mycosyst) that was prescribed to be taken for 14 days. 1 pill per day
apo ranitidine 28 pills two times daily half an hour before meals
30 pills One a Day Men's formula 250's  1 tablet daily after meal

These are all my meds prescribed by the hiv specialist doc at the clinic on last Saturday July 9th For your information

[leatherman]

what am I suppose to do now? Go back again like I'm a troublemaker.

quite frankly, yes.

Exactly what makes you think would you be making trouble by being an engaged consumer (of health care services) talking to your doctor about taking a seriously important precaution against an opportunistic infection that could kill you? That's what doctors are there for - to properly treat their patients. Just because your doctor is not following recommended guidelines to properly treat you, doesn't mean that you shouldn't pester your doctor about treating you properly.

As someone who barely survived PCP (not once; but twice) I assure you that Bactrim/Septra will certainly help you not die of pneumonia, which is quite possible while your cd4s are so very low.

on another issue, I personally think there is such a thing as "full blown AIDS". That's the condition when a person has a severely low cd4 count (something <100), a very high viral load, and is hospitalized with an opportunistic infection. When the doctors standing over your bed are telling you that you might not live to see the sun rise tomorrow, and you can't even cry because you can barely breathe, then you'll know what full blown AIDS feels like. It's very different from just living with AIDS and a dangerous situation.

Right now, rizzy, you are not dealing with "full blown AIDS"; but you are "living with AIDS". That Atripla will soon have you "living with HIV", and take it from us, living with HIV ain't so bad as long as you're adherent to the meds and take care of your health. Although you've taken a huge step towards taking care of your health (by being tested, diagnosed and treated), you should consider the great advice you have been given here from this great resource of people living with AIDS/HIV, and take the rest of the steps you need to get proper treatment.

can you not call the doctor at your clinic and leave a message that you would like PCP prophylaxis?


Please don't feel that we're ganging up on you or pushing you too hard. We're simply trying to help you the best we can, separated by miles and circumstances. If you don't like our advice, you could always just ignore us and move along; but many of us have been in your shoes and know how hard life can be. I, myself, was living with AIDS and working when I had to bury my first and second partners (almost 14 years to-the-day apart). It was a horrible time! Trying to maintain my life at work, without crying every moment or disclosing all my problems to my employer; while trying to maintain my life at home, even though I was sick as a dog and having to plan a funeral (and worrying about how the hell to pay all the bills with my partner and his income gone from our monthly plans). I certainly understand the burdens you are under right now; however, your health care right now is very important because of the damage done by HIV. You need to keep trying to get the best health care you can get - no matter how hard the struggle is to get that care.

[CaveyUK]

If my hiv doc don't see it fit to add pcp prevention meds to the list of prescription what am I suppose to do now? Go back again like I'm a troublemaker. Stop it. My brain is being overloaded with too much information. I'm day two on atripla and mycosyst now I'm tired of running to the clinic I feel like a bother now plus these are just recommendations.

Rizzy - we are only saying this for your benefit. If you would prefer us not to, just say and we can leave your thread alone.

PCP prophylaxis is a recommended regimen for people with CD4's < 200 (or in Jamaica 350 it seems). It is recommended because it will prevent people from getting an OI that can kill them. Now, if you had a stated CD4 of 240 then I could see the reluctance to be in the clinics face 24/7, but you have a stated CD4 of 16. Thats SIXTEEN. At that level, an OI like PCP could completely wipe out your immune system and as well as dealing with that, you could wind up with other infections which not only could (and probably will) kill you, but could also leave you dealing with the aftermath for the rest of your life.

At those level's it isn't just PCP you need prophylaxis for either.

Now you are fortunate to be feeling okay generally, despite the low number. So why now take a risk that could literally end your life, for the sake of not impacting your work? You do realise that if you contract PCP, Mac or one of the other life-threatening OI's, you won't be at work because you will be in hospital, right?

Seriously, get a grip. Call the clinic and demand some form of protection.

Your doctor seems to be behaving in the way they would for someone with a significantly higher CD4 count. Now that could be because the count provided is a lab error or could be down to general incompetence. Either way, you can only proceed on the information they have provided, and that information is that right now - you have a dangerously low immune system.

If you choose not to acknowledge that you need further protection that is fine, it is your choice. But at least go into it with open eyes and understand what a serious risk you are taking.

I know it sounds harsh, but there you go. Thats why we are here - to help each other.

[CaveyUK]

on another issue, I personally think there is such a thing as "full blown AIDS". That's the condition when a person has a severely low cd4 count (something <100), a very high viral load, and is hospitalized with an opportunistic infection. When the doctors standing over your bed are telling you that you might not live to see the sun rise tomorrow, and you can't even cry because you can barely breathe, then you'll know what full blown AIDS feels like. It's very different from just living with AIDS and a dangerous situation.

I get what you are saying leatherman, I think we just tend to not use the term 'full blown' because it is loaded with stigma. Much the same way we avoid talking about 'AIDS victims', despite many who went through terrible illnesses as a result of HIV/AIDS feeling that way about themselves.

While the term 'full blown' may *feel* correct, it isn't really describing anything. We don't tend to talk about full-blown flu, or full-blown cancer for the same reason.

As I say though, I do get where you are coming from. It must have been a horrific period to live through.

[Jim Allen]

Go back again like I'm a troublemaker.

Rizzy, I have several long term health issues, HIV is only one of them. 
There is a balance to doing this right (No I do not always get it right) however I have learned that when it comes to health care there is a time to be quiet and also a time to stand up insist, ask and question.

This is not being a troublemaker it is simply being clear what you want/need. (Trust me I am a real troublemaker from time to time, and asking for meds and sticking up for yourself  is not being a troublemaker)

Anyhow wish you all the best, let us know how you get on.

Jim.


 

[virgo313]

Hi Rizzy, I am very similar with you. Low CD4 when detected (so low that's I kept to myself & not wanting to let other worry). Also from a country that is not so advance but offer free meds. Also spend a lot of time visiting hospitals. At time i could hardly open my eye & still have to drive to hospital.

I am better now & i still want to be sure that i am taking Bactrim until i have a CD4 of 200 or more. What other have suggested (PCP prophylaxis) is exactly what i am doing now. I can feel how tired you are going to clinic.
Yes, you must go and get Bactrim & add to your daily meds. Thanks   

[hiv_rizzy]

Gosh I'm tired.  Sometimes giving up seems so much more easier.  I will ask for it but I have to wait till next Tuesday to get it added to a prescription.  The clinic is just once per week. Is there any other generic name for it especially used in Third World health terms

[hiv_rizzy]

Rizzy - we are only saying this for your benefit. If you would prefer us not to, just say and we can leave your thread alone.

PCP prophylaxis is a recommended regimen for people with CD4's < 200 (or in Jamaica 350 it seems). It is recommended because it will prevent people from getting an OI that can kill them. Now, if you had a stated CD4 of 240 then I could see the reluctance to be in the clinics face 24/7, but you have a stated CD4 of 16. Thats SIXTEEN. At that level, an OI like PCP could completely wipe out your immune system and as well as dealing with that, you could wind up with other infections which not only could (and probably will) kill you, but could also leave you dealing with the aftermath for the rest of your life.

At those level's it isn't just PCP you need prophylaxis for either.

Now you are fortunate to be feeling okay generally, despite the low number. So why now take a risk that could literally end your life, for the sake of not impacting your work? You do realise that if you contract PCP, Mac or one of the other life-threatening OI's, you won't be at work because you will be in hospital, right?

Seriously, get a grip. Call the clinic and demand some form of protection.

Your doctor seems to be behaving in the way they would for someone with a significantly higher CD4 count. Now that could be because the count provided is a lab error or could be down to general incompetence. Either way, you can only proceed on the information they have provided, and that information is that right now - you have a dangerously low immune system.

If you choose not to acknowledge that you need further protection that is fine, it is your choice. But at least go into it with open eyes and understand what a serious risk you are taking.

I know it sounds harsh, but there you go. Thats why we are here - to help each other.

Will it be ok to start pcp prevention meds even though I'm days into haart treatment??  Well the specialist would know that but I'm not sure how confident I am in her judgement seeing that everyone sharing the same experience based on the need of preventing pcp infection. If I can't get it from her I will go to a private doctor with the case file. 

[leatherman]

Is there any other generic name for it especially used in Third World health terms

Bactrim/Septra

Bactrim or Septra

Will it be ok to start pcp prevention meds even though I'm days into haart treatment??

taking bactrim/septra has nothing to do with HAART or HIV. so it could be started at any time.

[CaveyUK]

Bactrim or Septra

and Septrim. There may be others too (likely)

If in any doubt, Rizzy should ask the doctor about 'Co-Trimoxazole' and if that doesn't ring any bells should ask for 'Trimethoprim/Sulfamethoxazole' which is the full medical term for it.

If there are more blank stares then I would conclude they don't have a clue!

[CaveyUK]

Will it be ok to start pcp prevention meds even though I'm days into haart treatment?? 

Under 'normal' conditions, it is often recommended to start PCP prevention a couple of weeks before starting ART. This is only to allow side effects to be easily attributable to a specific drug, as starting them all at the same time would make it harder to establish whether the antibiotics or HIV meds are causing any particular side effect.

Under sub-optimal conditions, including a CD4 count that is extremely low, this would not matter  and they can be started together as it will be far more important to get HIV under control and simultaneously provide protection against serious OI's. Being tricky to pin down the source of a side is not the end of the world.

[CaveyUK]

Sometimes giving up seems so much more easier. 

Get a grip man. Everything will be fine.

Just need to ensure you have the various stuff in place to make your glide to full health that bit smoother

[hiv_rizzy]

**UPDATE**

So I got the prescription for bactrim. what to expect from this new drug?

Also... I am managing the atripla quite well! no major side effects nor crazy dreams  so far well over a week and a half now. It actually makes me sleep sound. In the morning I'm getting having better energy levels than before. Feeling fortunate to find this out when I did 
optimistic I will have the virus under control so my cd4 can live again

[Jim Allen]

Glad to hear your stating to feel better and that you now have the bactrim.

what to expect from this new drug?

In what way ? Sulfamethoxazole / trimethoprim can be/is used to treat, and in this case prevent a number of infections.

Jim

[leatherman]

So I got the prescription for bactrim. what to expect from this new drug?

you might be more sensitive to sunlight, so watch your exposure so that you don't burn.

You could also get very itchy. If so, talk to your doctor about taking the bactrim on the alternative dosing schedule (1/2 dose on mon-wed-fri)

other than that, you can expect to NOT get PCP pneumonia  while that doesn't sound like much, many people die from PCP so it is something to definitely prevent, and why we kept suggesting you check into bactrim.

It's good to hear you're doing so well with the Atripla.   Keep on taking those meds and your immune system will improve and soon you'll be past the point of needing to take Bactrim.

[virgo313]

Hi Rizzy,
Happy to know that you manage to add Bactrim to your meds & feeling stronger.
Same like you, i felt better as soon as i am on meds.
Allow me to "hijack" some "space"here for i have a question to ask. Thanks.

Hi Leatherman,
Need your advise. Thanks.
I am on same meds (Generic Atripla + Bactrim). Doing well.
About taking 1/2 doses of Bactrim mon,wed & Fri, do you think i can do this without asking my doctor?
I do not have easy excess to Dr & my next appointment will only be on early Oct. Been on Bactrim for almost 7 months already. Sometimes itchy a bit (bearable)

Thanks.

[leatherman]

About taking 1/2 doses of Bactrim mon,wed & Fri, do you think i can do this without asking my doctor?

can you put a call into your doctor and ask about this? Although there is an alternative dosing regimen, as I'm not a doctor, I'm certainly not going to tell you to do this without asking first.