Diagnosed last week, depressed. Need someone to share the experience day

[DWR]

Hello all,

I've reading the forum all night and have found you all caring and supportive and just want to share my experience.

I just got diagnosed last week following skin/mouth issues and enlarged lymphnodes (almost three months).

I was sort of prepared for the bad news before going to the test, but, it had proven to have shaken me as much 7 days ago.  The some of the clinic result came back and HIV positive status was confirmed last Thursday.

My mind could not process any of the information I only knew my CD4s were in the 100s (less than 200) and the viral load result has not been released yet.

As it was quite bad, the specialist prescribed Genvoya straightaway.  I started taking it on Friday. Today is my third day taking the drug.  I've read here that with low CD4s like I do, it would take a long time to recover as it is potentially the last stage of HIV infection.  What are some of your experiences?

I'm seeing the specialist on Friday again, and should find out the VL and other information as well as asking questions I didn't ask last week as my mind was blank.  What are some of the questions I should ask?  What are some of the stats I should know and keep record?

I didn't think this would happen to me and am really depressed without anyone to talk to (don't want to share the info with friends or family yet).  I've got an appointment with counselling this Friday, but really don't want to keep this as a secret, so hopefully I can use this forum to do this and maybe make some cyber friends and someone to talk to.

Thank you for reading.

[europepoz]

Hello DWR, and "welcome" to the club.  I have joined as well few months ago (march) and i remember i was very weak, could barely walk, don t remember the cd4, the viral load was 10,000000....i was prescribed stribild from the start, and it took one month to recover, now i am undetected and my cd was 541 last week.....i don t know the exact stats but i feel well and ny adherence till now is 100%, i do the exams regularly and the dictor told me that i am fine with the stats.....
I was shocked when i found out, even i knew i was taking some risk sleeping around i was always taking precautions (condom) but maybe that was not enough.....i know who but don t know how....not much can do now... i have not told anyone and i don t think i will, there is too much stigma....this forum and a local forum helped me very much, i don t know what i would have done without....
Now i feel good phisycally and mentally, i remember that i am hiv + when i take the pill in the morning and the exam every 2-3 months, otherwise i am good....
Just give little time and you will be fine as everyone else, stay strong, ciao

[DWR]

Hi europepoz, it was so nice for you to reply.  It is good to know that adherence can help.  I’ve been taking the pills for 4 days now, and only experiencing slight side effects.

I had a vivid dream the first day I took the pill, then tiredness on the second, it was gassy on the third with a bit of muscle aches and numbness in the right hand.  I’ll give it a few more days and see if it improves.  I can feel I’m actually physically better, and my glands have shrunk a bit, not sure if it is just my psychology playing games, but I do feel better.

Mentally, I’m still trying to understand the whole thing.  The counsellor suggested local support groups, I might discuss this with him this Friday and attend one to experience.

It is really good to see that you are mentally strong now as well, this gives me hope.

Thank you!

[Jim Allen]

Hi

Welcome to the forum, sorry to hear you have been feeling unwell, but glad you are getting treatment.

As it was quite bad, the specialist prescribed Genvoya straightaway.  I started taking it on Friday. Today is my third day taking the drug.  I've read here that with low CD4s like I do, it would take a long time to recover as it is potentially the last stage of HIV infection.  What are some of your experiences?

How long it takes depends ...

I mean your not bed ridden so physically you could be back on top really quickly. Treat any underling issues, take your meds and suppress the virus, move on with your life.

Its standard to start treatment as soon as possible, now sooner is better but that said we have members here who started with far lower or no CD4 cells and a few with hospitalisation level of illness but with care and treatment they are now doing fine. So try not to stress about this too much.

I'm seeing the specialist on Friday again,

Overall in the long run don't focus on the CD4's too much, they are what they are and its not something you can control or change other than taking your meds to suppress the virus. I do however wonder as you said the CD4's were less than 200 have you been given an antibiotic to take as well? 

Bactrim or Septrin is pretty standard to take to prevent infections such as PCP when you have low CD4 counts, if you have not started this no panic but you may just want to ask if its needed when you speak to your doctor.

I didn't think this would happen to me and am really depressed without anyone to talk to (don't want to share the info with friends or family yet).

End of the day HIV is not a big life changer anymore and many people will end up having one or more manageable conditions in life, so no need to share the information with friends or family if you don't want to share. I mean it can be great if you need support but you can't control other peoples reactions and once the news is out its out.

Now that is just my view of disclosing to family, there is no right or wrong answer everyone's situation and family are different.

I had a vivid dream the first day I took the pill, then tiredness on the second, it was gassy on the third with a bit of muscle aches and numbness in the right hand.  I’ll give it a few more days and see if it improves.  I can feel I’m actually physically better, and my glands have shrunk a bit, not sure if it is just my psychology playing games, but I do feel better.

Some people will experience some mild adjustments in the first few days, weeks of  starting treatment. The vivid dreams as example, they will settle down as your body adjusts and also heals as your immune system improves now it does not have to focus on a loosing fight over the HIV and can focus on better things.
 
Take it easy and keep us posted on the results from the doctor this week.

Jim

[paintedroom]

Hello DWR,

welcome to the elite low cd4`s on Genvoya and (bactrim).I joke of course because i was in your shoes a year ago..actually to the day now that i look at it.I had 50 cd4`s and kaposi sarcoma and started arvs within a week of diagnosis.1 month later and i was undetectable with cd4`s rising.
Do not worry too much,you will be fine.My first few months were a trip to say the least but i came here to this fine forum and asked questions and got invaluable help.Remember this - what they tell you here is TRUE.I couldn`t help but think a rosy picture was being doled out in order to spare me the real hidden truth.I was wrong.The drugs are truly miraculous and you will recover.Now is the time to start treating yourself very well -good food,rest and exercise if you are up to it.Adherence is of absolute importance -take your pill(s) every day at the same time and come on here and share your concerns,ask questions.
Genvoya is mothers milk and very unlikely to cause you any problems.i haven`t heard anyone have a single problem with it.You are likely to be prescribed bactrim,ask about it.

Allow yourself to take a few deep breaths,know that you will be ok and try not to let the whole thing burden you too much.

Stay in touch,this place is immortal !

[kentfrat1783]

Hi DWR,

I think we are in similar shoes right now.  I was just diagnosed between May 9th and the 11th of this year.  I was admitted to the hospital after two different ER visits for what turned out to be PCP.  (On a side note the second time I went to the ER the ER doctor seen me coming in and said you are admitted before he even looked me over). 

It turned out by CD4 count was "2" and I am unsure of my Viral Load (VL).   I started Atripla a month after diagnosis, and on Bactrim and Zithromax (sp?).  In addition to a Neutropenic diet.  I don't get my new CD4 count until the end of September and just hoping for the best.

Once the doctor came into the room and told everyone to leave I knew the results even before she told me (just a hunch).  Not like I slept around but still could have made better decisions I bet. 

My family doctor and Infectious Disease (ID) doctor both just call it a condition and are very optimistic that I will be fine and live a long life.  Like you I read a lot online so just be careful what sites you read and to ask your ID questions. 

Biggest thing I have learned is the following:

1) Take your meds on time
2) Set alarms to take them
3) Ask the Pharmacist questions on how/when to take the pill('s)
4) Don't skip appointments
5) Eat healthy
6) Talk (and I'm bad at that)

I don't talk to my family much about the "new club" I'm in as only a few know.  Eventually I will get more comfortable to deal with it but will still keep it to myself.  No reason for others to know.  (With the exception of any future sexual partners as in a lot of states you must disclose.  That is in the USA)

And on the side of what will others think of you taking the pills...it's no issue.  People today takes pills for anything and I don't ask them what they are taking and I'm sure they won't ask you either. 

I am glad that you are going to talk to someone and getting on the right path to being healthy again.  Just know we are here for you if you need to talk, vent or just have questions.

Kenneth

[DWR]

Hi Jim,

Thank you very much for your reply.

I do however wonder as you said the CD4's were less than 200 have you been given an antibiotic to take as well? 

Yes, the specialist did prescribe me with Bactria DS (half a tablet for 40 days).  So, I think I should be fine on this ground.

I ended up telling one of my close friend, to my surprise she actually took it quite well and actually became even closer in some sense after learning the news.  She’s good at keeping secrets, so I think I should be fine with keeping the secret from others and my parents.  I’m very grateful for this.

Again, thank you for your long post and I’ll keep you updated.

Thank you.

[DWR]

Hi painted room,

Thank you for your reply and encouragement!

Genvoya is mothers milk and very unlikely to cause you any problems.i haven`t heard anyone have a single problem with it.You are likely to be prescribed bactrim,ask about it.

Allow yourself to take a few deep breaths,know that you will be ok and try not to let the whole thing burden you too much.

Yes, the side effects seemed to have subsided.  The only thing I’ve experienced in the past day is a bit of gas in the stomach, but compared to the days before, it is much better.  I have been adhering to taking Genvoya on time every day and should be able to keep adhering to it.

Emotionally, I kind of accepted the fact and am less depressed.  I have been trying to keep myself busy as well, so it had made me think of the issue less as well.  Hopefully, I’ll have some better news on Friday.  I’ll keep you updated.

Thank you!

[DWR]

Hi Kenneth,

Thank you for your reply and sharing your own personal experience.

I was actually hospitalised a few months ago for 5 days, however, it never occurred to me or the doctor that this might be the cause.  From what I learnt form the specialist last week, the virus has provided been inside me for quite many years.

I now believe the best decision I have made in my life was to get myself checked after the symptoms showed up, especially the extensive hair loss.  After taking Genvoya, it seems the situation has improved, and I’m not losing as much hair as it did last few weeks.  Hopefully, it will grow back a bit.

And on the side of what will others think of you taking the pills...it's no issue.  People today takes pills for anything and I don't ask them what they are taking and I'm sure they won't ask you either. 

I’ve just bought a small container and got my pills ready for tomorrow and set alarms to remind me to take them.  I guess one day it will just be a routine and I’ll just be like my elder relatives who take pills every day for their “conditions”.

Again, thanks for the reply and I’ll share any news here.

[em]

May I add a thought?

I do not know if this is helpful but someone I know a close friend of mine that this happened too. They have been taking meds for quite some time over a couple of decades or so  and is doing well enough. He won't be getting a gold medal in gymnastics any time soon but that was never going to happen HIV  or not anyway he is to lazy. The shock disbelief and resulting depression HE had felt it too. He told me It feels overwhelming at first and sometimes even later but may not completely ever go away but should subside  becomes less prominent and manageable.   laughter love and enjoyment does happen again at least it did for him.   wait a minute that was me I just got tired of writing so much  in the first person.  I did this,  I did that Me me me sounds like a self centered self absorbed and  selfish individual without friends.  well that maybe true not the fault of HIV just this person is hard to be around but HIV does not mean life has ended . Just an older man's view on his experiences with his HIV

sorry if this short story  sounded  a bit crazy but not to worry He I mean me was crazy way before he got HIV, the mental illness he has, well he would have had it even without HIV

you have a lot of life left to live just saying

[DWR]

May I add a thought?

Hi em,

I appreciate you taking the take to reply to my post and thank you for your story and encouragement.

After reading this forum and other sources, I am now less anxious and am prepared to live the full life ahead.  I’m sure from time to time, I would still wonder why and how, but that’s just normal human emotion playing its part.  I’m fortunate to have a caring friend and now I am fortunate to have all of you.  Learning your stories and experiences does provide peace for me.  So, thank you.

[DWR]

Hi all,

I just came back from the specialist.  The results were according to the specialist not too bad.

CD4 at 150 and VL at 160595.  With Genvoya, the specialist is optimistic that the VL will be undetectable in around 3 months.

The counsellor also offered me to join one of the support group in the area. 

With these news, I do feel a lot better both physically and emotionally.

Thanks for your support as well.

[paintedroom]

Delighted to hear the good news for you DWR.

It`s a good feeling to arrive on slightly more solid ground after the first number of weeks/months..now you just ensure you do your part and adhere to the drugs and the time of the day you take em.It`s a good time to try and improve your lifestyle - dietary,exercise etc.

I rise,i rise,i rise !

[DWR]

Thank you paintedroom.

Yes, being told by the specialist after she confirmed all the numbers was reassuring.  It eased my minds greatly.

She told me to still take both Genvoya and Bactrim DS at the moment until my CD4 gets over 250, then she’ll take me off Bactrim.  I’ll have another blood test in 4 weeks, so hopefully, it’ll be good news.

Thanks again for your support.

[paintedroom]

We`re in similar territory - cd4 193 two blood tests ago.I decided not to ask at last blood test as i know they will tell me when i`m above 200 for 6 months..then off bactrim.I made that choice as i`m a bit of a slow riser it seems and didn`t want to agonise over a possible 10 or 20 cd4`s every couple of months.I started testosterone replacement therapy a little over a month ago so i`m having some expected fluctuations there and will take a little time before i feel like a shiny new penny again.Otherwise i`m still bloody grateful to be healthy.

How is the bactrim treating you so far ?

P.

[DWR]

How is the bactrim treating you so far ?

I have to say at the moment, with both Genvoya and Bactrim, I haven't experienced too much of an issue. I had some minor side effects showing up, but it seems all gone now.

However, as this is only the seventh day I've been having Bactrim, so it is really hard to tell.  According to my specialist, if there is anything, it should show up around the second or the third week.  I'll be looking out for any rashes and hopefully I will be fine.

Did you have any issue?

[Jim Allen]

I'm allergic to antibiotics, unfortunately this includs Bactrim and Seprin.

I did stick with them, I had to take antihistamines to reduce the rash and the itching/discomfort and boy was I happy when i could stop taking them.

But thankfully you are not me 

You should not be anticipating issues, and should you have a reaction to the Bactrim remember don't let it get you down or worry you, simple see the doc and switch.

Jim 
 

[DWR]

Hi Jim,

I'm so sorry to hear your experience with antibiotics.  I haven't experienced an issues with antibiotics in the past, so hopefully I will be fine this time with Bactrim.  Otherwise, I'll be seeing the docs first thing.

Thanks for the support, hopefully I'll have good news.

[paintedroom]

Hey again,

Just a rash on my feet which cleared up in no time.

All will be fine

[em]

A bad experience  I had with Bactrim. That now seems kind of funny

and would like to share with you

It was quite a while ago at least twenty five years or more   I do not recall why they had me on it . I had taken the bactrim in the morning and went about my day after skipping breakfast. Then tried to catch up on somethings I had been putting off and skipped lunch then at the end of the day I had taken my second  night time dose and then ate most of a large pizza. a short time later got very sick. I blamed the pizza. My wife had taken me to the ER where they said I had an allergic reaction to the antibiotic.  I still have on my medical record allergy to sulfur meds because of it. even though going all day without eating I am sure was the main cause of my getting sick. teach me to push myself too hard. just saying not a good idea.

I laugh about it now every time The docs look at my medical record and say so you are allergic to  bactrim? I think to myself it was a bad pizza and my wife has told  me it was going without eating all day then gorging myself. the bactum was only part of the problems that day 

Lesson learned not to push myself so hard

but yet I am still alive so many years later after making stupid mistakes like that

 

[DWR]

Hey paintedroom,

Thanks again for the reassurance!

Cheers.

Hey again,

Just a rash on my feet which cleared up in no time.

All will be fine

[DWR]

Hi em,

Thanks for sharing your experience.  I do find having both Genvoya and Bactrim with meal helps a lot in reducing the occurrence of side effects.

Looking back, when I had the vivid dream after taking Genvoya for the first time a week ago, it was a few hours after lunch and before dinner.  After that, I made sure I have something in the stomach before having the pills and it seems to have helped.

Thanks for sharing the experience.  Appreciate it!

I had taken the bactrim in the morning and went about my day after skipping breakfast.

[DWR]

Hello all,

Thank you for all your support.

I’ve got my one month test result back and am pleasantly surprised and wanted to share with you the progress.

I had my blood drawn on 29/08/2017, one month after taking Genvoya.  My CD4 is now 220 and my Viral Load is actually undectable.

Thanks again for all your initial support that really put me to ease with the new diagnosis and learning the most recent result made me feel so much better to have a brighter future.

Thanks all.

[paintedroom]

Great news DWR 

Really is a wonderful feeling to have cleared out the enemy and allow your body to recover.

Now you can help it along with good food,exercise and sleep.

P.

[DWR]

Thank you paintedroom,

I still cannot believe how powerful this drug is.  The doctor said it might take three months, and in 4 weeks, I was undetectable.  It was a great feeling.

I also don’t need the Bactrim DS anymore, so even better, one less medicine to worry about.

I will definitely try to live a healthier life to maintain the current health levels.

Thanks for your support.

[paintedroom]

You`re more than welcome DWR 

I also log in here daily,sometimes just for a snapshot,sometimes for a sustained read.i find it makes me honest about where i`m at and maybe i can help a tiny bit..anyway it serves to make me less anxious sometimes.

Stay strong ! P.

[europepoz]

Hello DWR, good that you fine, hopefully i will switch to genvoya too soon (the doctor said that) as everyone says that is better than stribikd....and also feel some pain in the area of the kidneys....i think might be related, other than that that, everythingh fine as before of contracting hiv.....

[DWR]

Hi europepoz,

From what my doctors and counsellor have told me as well reading from this site and other HIV sites, it seems that Genvoya is going to have less impact on the body organs and causes less damage.  Maybe give it a try if your doctor agrees, and hopefully your body will react with this drug better.

All the best!