Positive on Monday

[JfromGA]

I’m a straight, married man, so this news has blindsided me.
I tested positive on Monday after dealing with some GI issues since last August.
I never thought it could be this.
I can’t focus and can barely sleep.
I just woke up to an email with my CD4 count. It’s 65. So, to my understanding, I have AIDS. I can’t believe it. I keep rereading the result. My viral load came back earlier in the week and was 608,000.
I guess the good news is that I’m already on Biktarvy since Wednesday.
The amazing news is that somehow my wife never was infected!!
I’m assuming that I’m going to have to go on more meds with my CD4 that low?

I also know how I got it. I was sexually assaulted before I got married. I never told anyone and basically suppressed all memories from that part of my life. I’m now reliving them. I had to tell my wife about it but didn’t share details. I journaled the story and going to a therapist next Friday.

I’m just overwhelmed with emotions. My mind won’t stop racing. If I’m not thinking about the assault, I’m thinking about the disease I now have.

I’ve read on here that it will get better with time. I want to believe it. Just not sure I can yet.

[leatherman]

I’m assuming that I’m going to have to go on more meds with my CD4 that low?

I’ve read on here that it will get better with time. I want to believe it. Just not sure I can yet.

Sorry to hear about your diagnosis and your numbers. Having already started Biktarvy is a very good thing. Within a few months you'll see that viral load decrease and it won't be long until your viral load is "undetectable". While there isn't a cure for HIV, the meds stop HIV from replicating and using up your cd4 immune cells.

Poz has a lot of resources about HIV, and you might want to look through some it starting with the basics at
https://www.poz.com/basics/hiv-basics/newly-diagnosed

Unfortunately once your cd4 count is under 200, you're diagnosed with AIDS - which is nothing more than advanced HIV disease - same disease, different stage. As the meds work stopping HIV, your cd4s will start to recover. While your cd4s are under 200, the doctor will also prescribe Bactrim, an antibiotic that will help keep you from getting PCP pneumonia.

It's good that your wife tested negative. There are several ways to help her stay that way too. There's PrEP, a medication she can take to prevent getting infected with HIV. And there's you! Once you have reached an undetectable viral load, and stay undetectable for 6 months, you can no longer transmit HIV. Of course, condoms work too to stop the spread of HIV.

I know it's very hard to believe that it gets better when you're first diagnosed; but it really does. People have been hospitalized with AIDS-related illnesses, started on medications, and have gone on to live full normal lives. There are several members here, myself included, who were diagnosed with <5 cd4s, a viral load in the millions, then started meds, got healthier and have gone on to still be alive and kicking 30 or 40 years later.

So far it sounds like you're heading down the right path. You're taking daily HIV medication; you have the support of your wife; you'll be seeing a therapist; and you're seeing a doctor about HIV and your GI issues. just keep doing all that and give it some time for you to deal with your emotions and for the meds to help you get healthier.

[JfromGA]

Thanks for the quick reply! It helps to hear of success stories.
I’ve emailed my doctor to see what they want to do.
I travel every week for work, so now, I’m freaking out about OIs.

[leatherman]

I’m freaking out about OIs.

Want some reasons NOT to freak out?
You haven't had any serious issues (short of your GI issues) so far and you're already on meds that are working against the HIV. While it's possible that you may have some minor issues as your immune system improves and starts working back up to par, technically your situation is already improving. That's good news. And good news is something to focus on. Stress and worry won't help you get better. It's really true that a positive attitude helps to reach a positive result.

Like I said earlier though, it takes time. Now that you're taking daily meds, keep the faith that every day now is a day towards being healthier. You many not feel healthier yet and you may not have the faith now; but faking it until you make it is never a bad motto for life.

[JfromGA]

Thanks. You made me laugh for the first time this week. I’ll definitely try to start faking it…and hopefully soon I’ll make it back to a new reality.

[Tonny2]

                     ojo.          Hi there!!…welcome to the forum…I’m sorry for your dx and how you acquired but hiv is hiv now you are treating it and in a matter of three months, may be, you will be UD then you can concentrate in the way how you got it. You have been PTalking” on here with  very knowledgeable member of this forum, a survivor of this pandemic, so you have gotten a good advice. You are on phase AIDS but, back in the days, it was a death sentence now, it’s just a term to indicate that you need to help your immune system with some antibiotics to preven opurtunistic infections…you will not need to take more antirretrovirals due to your low soldiers, biktarvy will do the job as long as you take it as ptrsctibed and now that you are PISITIVE YOU GOT TO BE MORE POSITIVE, you are getting a second chance in being a better human being…good luck and please keep us pisted…hugs



Ps, i also was diagnosed with “full blown aids”, it was the term used a long time ago. My cd4=20 and I’m here “talking” to you. Got it?… or when he takes to survive his discipline by taking your medication as prescribed and attitude, positive attitude, no pun intended

[JfromGA]

Thanks for the advice. It’s hard to not go down the rabbit hole…especially with outdated studies all thru the google search. And with the stigma still surrounding it, it’s difficult to discuss with others. My wife is trying to find a therapist also. And, then, I hope we can find a good couples one, so I can explain the pain I’ve hidden for so many years.
It sucks that these results didn’t come until the weekend, because I am now over eager to talk to my DR. Hoping she will answer me on Monday!

[Jim Allen]

While your cd4s are under 200, the doctor will also prescribe Bactrim, an antibiotic that will help keep you from getting PCP pneumonia.

This.

There are several members here, myself included, who were diagnosed with <5 cd4s, a viral load in the millions, then started meds, got healthier and have gone on to still be alive and kicking 30 or 40 years later.

Also worth repeating. A touch of AIDS, well, it's avoided but you are here now, can't change that, no point in stressing about it. With antibiotics to help prevent OIs and HIV treatment to suppress the viral load, you will soon make progress in the right direction.

I’m just overwhelmed with emotions. My mind won’t stop racing. If I’m not thinking about the assault, I’m thinking about the disease I now have.

An HIV diagnosis on its own can be a lot to digest at first, not to mention the assault, and I am sorry to read about the assault.

Glad you are getting some support from a therapist. If you don't mind me asking, were you seeing the therapist already or is this something new?

I’m a straight, married man

  I was starting to think I was the only straight person on here.

It’s hard to not go down the rabbit hole…especially with outdated studies all thru the google search.

Stop it!

Stop googling and stop reading, as nothing you find is going to change anything or help you. Treatment + time, that its. Googling and reading crap is just going to be overwhelming and feed your negative patterns and make things worse.

Give it six months and if after that you want to google fine, and then come back here and we will tell you why you are wrong 

[Jim Allen]

I know you are new to this, but if you want, there is a forum peer support group.

It's a virtual monthly meeting; the next meeting is Saturday, May 20th, it's mostly just a laugh, talking about life and a catch-up, but we also answer questions, talk about HIV and support each other. Let me know if you want to join and you can read more about it here; https://forums.poz.com/index.php?topic=76748.msg

[JfromGA]

Glad you are getting some support from a therapist. If you don't mind me asking, were you seeing the therapist already or is this something new?

It’s new. I’ve never spoken to anyone about the assault. I just blanked that entire part of my life out of my mind. And, I had somehow been able to feel great about myself and have an amazing life. I’m thankful for that. But, now, it’s hit me really intensely. I know I need support to regain control of my life.

[JfromGA]

Heard from Dr. Confirmed what you all have said. Picking up Bactrim tomorrow.
She was also good with me traveling for work again if I felt like it. I think I need to get back to a routine.
Also, I went to see my primary today. More so to just have a conversation and to see how he would support. He was reassuring and patient with my questions. I feel like he will be very supportive and responsive for any other illnesses that may happen. He also wants me to try Melatonin for sleep. I only got about 2 hours again last night. I’ve only slept one night since, and I think that was my body just forcing me. Will see how it works.
Therapist is Friday. Nervous. Definitely don’t want to talk about the assault, but I know I need to. My wife also spoke with someone today that specializes in HIV. I’m glad she has found another outlet. I’m usually the strong one to get us through but I’m still a hot mess right now…but I’m definitely faking it until I make it. I actually smiled today.

[Loa111]

Sorry to hear you found out your poz.

If it makes you feel better, I am also a straight married guy who got sick & found out I was not only poz but has just a 22 CD4 so put in the AIDS group too.

It was funny because It was 3 weeks after first finding out I was poz that my CD4 results came back & I was all freaked out it was in the advanced HIV (AIDS stage). I remember posting on there about it, nearly 5 years ago to the day, all worried, and the guys on there gave me great support. Of course I had several OIs too such as pneumonia, thrush, diarrhoea, rash, weight loss etc which lead to my DX.

I was on an antibiotic similar to Bactrim for well over 18 months too. It look 2 years for my CD4 to get over 200.

Today I am strong, very fit, & very active, so the good news is you will recover too, just keep taking your daily pill, and aim to live healthy & get fit.

The lads on here would tell me that after a period of time, I won't even think about HIV much, and to be honest that is the truth & exactly what happened.  The only time I think of it is when I take my pill in the morning, go to see the ID doc every 4 months & when I come on here. Other than that, I feel so good, it is like I do not have HIV at all.

This forum will give you great support going forward.

[leatherman]

Today I am strong, very fit, & very active, so the good news is you will recover too, just keep taking your daily pill, and aim to live healthy & get fit.

All of your post gave me a great big smile. Good results are always good to hear. 

just an interesting tidbit: next year will be the 25th anniversary of the forums. Two and a half decades of helping people is quite an accomplishment as so many of us can attest.

any other illnesses that may happen.

Now, don't go borrowing trouble. LOL It's good to hear that your doctor is supportive....especially since as time goes by, you'll find that most of your health issues in the future will have everything to do with just getting older (ugh. it happens to all us whether we want it to or not. LOL) and won't have anything to do with your suppressed HIV.

[JfromGA]

Thanks for the comments. Really appreciate your perspectives!

[JfromGA]

About to leave to head to DR for follow up appointment. Anxious.
Hoping she goes ahead and runs bloodwork to see if the drugs have made progress. I know it’s only been 3 weeks but just want that mental note of they are working and moving in right direction.
I think she’s about to load me up on vaccines too…not looking forward to that! Last time I took the Covid shot, I had a major reaction. Wondering if HIV contributed?
Will update if I get results.

[Jim Allen]

I think she’s about to load me up on vaccines too

Good. A whole list of vaccinations is recommended for people living with HIV to help prevent or reduce illness. If you check here under "HIV infection", you can see a few. https://www.cdc.gov/vaccines/adults/rec-vac/index.html

Talk to your doctor about vaccination to see when you can get them.

[JfromGA]

Got pneumonia and shingles vaccines. Have to go back for others in 2 weeks.
Just got VL…went from 608,000 to 524.
Assuming CD4s will come around the middle of next week.
Physically, feeling good!
Mentally, still in progress…

[Tonny2]

         ojo.       Hi there!!… congratulations, great news!. Your treatment is working, keep doing what you have been doing and you will be on your way to take back control of your life. I know that it takes time to digest the diagnosis but, it takes time to do it, but, the sooner you do it the faster you will start living a normal life again…hugs

[Shazam9cd4]

I know very much how you must be feeling now.  Its a scary place to be and it takes time to get though it. But you will.  Hang in there.  Life is still awesome!   

 I was diagnosed one year ago in the hospital where i stayed for a month suffering from an AIDS defining illness.  cD4 of 9.  Touch and go situation. Wife and young  son. Insurance company cancelled my policy while in ICU . 

What a shocker. No wonder they give you anti-depressants,  anti anxiety snd  sleeping pills while in ICU! What an amazing change of life direction.  I thought at the time this was a death sentence.  Had no idea what progress had been made in treatment or what to expect in the coming months. 

One step at a time. Aart started immediately.  Overcame PCP, Sepsis and severe Pneumonia.  The relief of my wife testing negative removed the greatest burden hanging over me at the time.  Was fortunate to have a  loving wife who stood by my side,  a great caring doctor who was far more positive than i was,  and a supportive  medical system.  And importantly all the people here on POZ who gave something more important than anything else - hope and belief.

Then came slow recovery and  living with it.  Its been a year and CD counts are still under 200 but increasing nonetheless. Remain on Co-tri prophylaxis but no material illness (knock on wood) Viral  load undetectable after 8 months. What a milestone that was.  The facial and itchy body rashes were a challenge but were/are continuously improving and manageable.  Nizoral shampoo was a great help during the later stages of managing through that.  Had covid twice no problems.  Now have exaggerated responses to mosquitos and other insects when before i ld never raise a welt.  Disconcerting But again - manageable.

The hardest part Is psychological for me.  The stigma,  the anxiety,  the chronic inflammation,  the slow CD4 recovery, kidneys which suffered  but are now stable,   the every single day waking up with thoughts of what i have,   every single night going to sleep with the thoughts of what lay ahead. 

But what ive come to learn is life goes on! You can still laugh,  love,  dance, be active hike up mountains, kayak on oceans, enjoy a good bottle of wine,  learn new things,  meet new people, enjoy the people around you and what each day brings even more than before!!!

In the past  year since diagnosis i have had friends pass away from cancer and other illnesses. My squash partner now in  wheelchair because of an aneurism suffered  while i was in the hospital.  I mourn for the loss but frankly this puts HIV into perspective - i know this is not a death sentence.

 Its a manageable chronic illness where the biggest bogeyman lives in our own thoughts and fears.    Have faith!!

 

[JfromGA]

Been a while since I posted.
Progress continues.
VL down to 84.
Had a little bit of a mental setback when I saw on my medical record it said “AIDS”.
Still dealing with the assault has been more of my mental challenge. Have been in therapy and started a new treatment that has helped.

[Loa111]

Had a little bit of a mental setback when I saw on my medical record it said “AIDS”.

Sorry to hear that. Actually, the exact same thing happened me. I was bad enough finding out I was poz, but when CD4 results (22 for me) came back & I realised I had AIDS I internally freaked out for a while, terrible shock & took me weeks to process it.

Luckily the people on here reassured me it was nothing to worry about, as these days it is considered "Advanced HIV". In fact,  my ID Doc never used the word AIDS, he just said it is "advanced".

The good people on here helped me make sense of it so I just got on with taking my meds & my health slowly recovered over the following months. I was on antibiotics for around 2 years after initial DX until my CD4 got over 200 steadily.

[leatherman]

Had a little bit of a mental setback when I saw on my medical record it said “AIDS”.

i know this will sound trite, but AIDS is just a word.

Of course, a first it's a big ol' slap in the face and makes you think a lot about your own mortality. But time will go by, your numbers will get much better and then you'll probably not think about "AIDS" but about being "HIV+" for a while. Eventually when even more time goes by you'll not think about either word very much. You'll just be YOU.

I can say these things as someone who lived with counts that kept me in the "AIDS" category for nearly 15 yrs. Now after 15 yrs after that, I've moved pass the AIDS and for all intents and purposes (except for my various HIV advocacy work) I’m just me.

Of course though, having that AIDS diagnosis does follow you around some, but mostly with health care. And believe it or not, that’s not necessarily a bad thing. An AIDS dx can be helpful to have access to health care. The Ryan White Care Act that most providers work under help insures health care for those who meet financial criteria and also can assist people who have or have had AIDS.

Also, having an AIDS dx means that at one time HIV did quite a bit of damage to your immune system. Even after you recover to good stable numbers for a long time, HIV could have done enough long term damage to create some sort of health issue in the future. Now that’s not a given, it just means that your doctor(s) need to keep an eye out to prevent, head off, or alleviate any potential problems. So in the long term that means doctors you see will probably take better care of you...and that’s a good thing!

There’s an old riff on a Bette Davis quote that says “AIDS isn’t for sissies”. While just being HIV+ isn’t a cake walk, having AIDS is a double whammy of bad health and worse mental/emotional health. The good news is we have great meds to fix the health issues. The bad news is that mental/emotional health doesn’t get near enough support; however, even with help, it just takes time to deal with. My suggestion when you’re feeling bad about how things are is to work on making a good change to your life. Don’t like your furniture? Work on getting something new. Things aren’t good with your partner? Communicate and work on loving each other more. Need to find a partner? Get out there! Need to improve your general health? You know this answer LOL, go exercise and eat healthier. Don’t like your job? Work at finding a new one. If HIV is going to be the bad change in your life, you might as well use it to create good changes in your life.

[JfromGA]

Got updated test results this morning.
VL still at 84. A little disappointing that it stayed the same.
CD4 shot up to 266. Was surprised to see such a jump actually.
Dr said everything is looking good. Took me off Bactrim.
Got 2 more vaccines.
Don’t have to go back for 4 months.

[Jim Allen]

Great that you can drop the antibiotics and the lab results are fantastic.

VL from 608,000 to 84 within a short time. 👍 The meds are working and the viral load is supressed.

[Jim Allen]

Far more important question is, how are you feeling/doing?

[JfromGA]

Thanks for asking…
From a medical standpoint, I’m feeling good. Feeling like it’s under control and will not be a health issue going forward.
From the abuse I suffered, it has been a tougher battle. Bottling those emotions up for 20 years might not have been the best decision. Lol. But, I’m making progress. I’ve been in a treatment called EMDR which helps de-sensitize and re-process the memories. It’s exhausting but has helped.
I am not as active on here as I first was because I found a forum that focuses on the male abuse. I’ve come to realize that is the bigger struggle in this situation. I appreciate the support from everyone here though!
Thanks again for asking!

[Jim Allen]

Glad to hear that you are making progress and things are getting better, I appreciate that it is not an easy journey, and it's good that you have peer support to help.

Were here whenever you need us, and do keep us posted from time to time.

[leatherman]

VL still at 84. A little disappointing that it stayed the same.

Ah! Maybe you haven't read one of my posts talking about looking at results. LOL

The best way is always to view the trend of at least 3 tests over 3-6 months....that works for VL or CD4. The trend is the better way to look because both numbers fluctuate instead of always going in a straight line. The viral load can "bounce" a little while it decreases and Cd4s can change by 100pts in a day. 

So let's look at yours. Diagnosed in May. First VL of 608k. In June it was already down to 530. In July it was 84 and barely here into Aug it's 84. So the trend so far in just 3 months has been from over half a million VL almost straight down nearly UD. Since successful treatment is a VL<200, the meds have certainly worked well for you!

Not to mention but that jump in cd4s sure does prove the meds are working. Technically that puts you passed the dreaded word "AIDS" now.

Glad to hear too that you are receiving help for issues other than HIV. Sometimes our journeys through life are very hard to bear, and it takes help to work on making the trauma bearable.

[JfromGA]

Thanks to both of you for your support!

[Jim Allen]

Anytime. Hugs and wishing you all the best.

[numbersguy82]

Greetings JfromGa! I see from reading over this thread that you are settling in and seeing improvement already from your meds. That’s fantastic!

So Leatherman and I are actually beginning a bi-weekly support group call (Google meet but video isn’t required)

I think you are in the same time zone as me, so our first call would be tomm at 7pm. If you are interested just drop me a private message with your email. We are hoping to provide a regular meeting space for people, within all walks of the hiv journey, to come together for community and support. Hope to see you participate either tomm or sometime in the future.

Be well~ Alan

[JfromGA]

Got my updated results…finally undetectable!
CD4 jumped to 379 and 16%.
So, significant progress since dx.

Feeling good about medical part.
Still struggling mentally with the abuse part. My normal therapy sessions for the PTSD were interrupted during Holidays and will begin again in January. Looking forward to it!
Feel like it’s 1 step forward and 2 steps back.
Had a very negative comment from a member of HIV community outside of this forum, so still realizing the stigma is there. Made me very angry that someone would still do that, especially someone who should know better.

[Jim Allen]

Glad to hear that your labs continue to be good and that you are engaged in therapy/support.

Had a very negative comment from a member of HIV community outside of this forum, so still realizing the stigma is there. Made me very angry that someone would still do that, especially someone who should know better.

Sorry to hear that, stigma isn't going anywhere soon. Don't let it / them get to you

[Tonny2]

         ojo.          Congratulations!!… remember That as long as you keep taking your medication as prescribed, you are going to be fine…. I hope and you can find peace in your soul soon….hugs and happy new year

[Dogman]

I just read your post and it bought flooding back the mental anguish and disbelief when I was diagnosed just over a year ago. I had no idea I had it, I (fortunately) had not been ill, despite a CD4 of < 200 and a VL of 100,000 or so. Biktarvy works well, your latter post demonstrates that, like you, within 3 weeks of starting Biktarvy I was undetectable and with a CD4 > 200. A year on, I'm close to 600 CD4 and undetectable. I have chosen to go on a 2 drug treatment, to reduce the number of drugs in my system.  The mental side was and still is the hardest part, I couldn't sleep, I couldn't focus - except on the virus and my diagnosis. I cried everytime I saw the doctor and he said a trigger word, like HIV, like virus, like diseased ( or when I read my chart ). I had anxiety every time I had to face someone to pick up a prescription. I want to say, it will ease and it will get better. You will come to the realization that your life doesn't change, apart from 1 pill a day, life will go on, I still travel, I still work, go out for dinners - do everything I did while I had the virus but was blissfully unaware of that fact.  Yes it still gets into my thoughts, but it's nothing like it was. You WILL sleep again, I promise. My take now, it's just a virus. It's under control, it isn't damaging my system anymore, I can't give it to anyone. Life goes on. I wish you peace of mind and health and happiness in 2024 and beyond. There is a wealth of care and wisdom on this site, especially from other members. It has been invaluable to me and will be to you.

[Jim Allen]

I just read your post and it bought flooding back the mental anguish and disbelief when I was diagnosed just over a year ago. I had no idea I had it, I (fortunately) had not been ill, despite a CD4 of < 200 and a VL of 100,000 or so. Biktarvy works well, your latter post demonstrates that, like you, within 3 weeks of starting Biktarvy I was undetectable and with a CD4 > 200. A year on, I'm close to 600 CD4 and undetectable. I have chosen to go on a 2 drug treatment, to reduce the number of drugs in my system.  The mental side was and still is the hardest part, I couldn't sleep, I couldn't focus - except on the virus and my diagnosis. I cried everytime I saw the doctor and he said a trigger word, like HIV, like virus, like diseased ( or when I read my chart ). I had anxiety every time I had to face someone to pick up a prescription. I want to say, it will ease and it will get better. You will come to the realization that your life doesn't change, apart from 1 pill a day, life will go on, I still travel, I still work, go out for dinners - do everything I did while I had the virus but was blissfully unaware of that fact.  Yes it still gets into my thoughts, but it's nothing like it was. You WILL sleep again, I promise. My take now, it's just a virus. It's under control, it isn't damaging my system anymore, I can't give it to anyone. Life goes on. I wish you peace of mind and health and happiness in 2024 and beyond. There is a wealth of care and wisdom on this site, especially from other members. It has been invaluable to me and will be to you.

excellent post

[Charles.M]

Got my updated results…finally undetectable!
CD4 jumped to 379 and 16%.
So, significant progress since dx.

Feeling good about medical part.
Still struggling mentally with the abuse part. My normal therapy sessions for the PTSD were interrupted during Holidays and will begin again in January. Looking forward to it!
Feel like it’s 1 step forward and 2 steps back.
Had a very negative comment from a member of HIV community outside of this forum, so still realizing the stigma is there. Made me very angry that someone would still do that, especially someone who should know better.

I was diagnosed almost the exact time as you. I was CD63 VL 64,000 CD4/CD8 4%. Just got tested 28 December and at CD149 VL UD CD4/CD8 6%. My numbers are climbing much slower than yours I am also on Biktarvy. I am 62 perhaps my age is an issue. Congrats on yoyur numbers, wish i could get mine to go up!