My story (Sorry it's long)

[Brian1966]

Hello All,
First, thanks for approving my log in to the forums.  I stumbled upon them around a month ago and was luring for a little bit.  In 2021, I had a bad case of COVID, and got over it and mostly started recovering.  I couldn't shake the chronic fatigue and after several months of just hearing "It's normal for some people after a severe case" I had some labs done and my doctor thought I might have clotting in my lungs, so we did a chest CT and I had the the same opacity showing and some nodules in my lungs, the pulmonologist said it was consistent with Long Covid.  My lung function & capacity was slowly dropping, as was my energy levels so they did a echo-cardiogram and a cardiac stress test, and a pulmonary function test.  During this time I was continuing to get weaker and weaker.  I had a second case of Covid in July 22, and then pneumonia in August and just never quite shook it.  I ended up on oxygen shortly later and then a recurrence of pneumonia in Nov. 22.  The second time around, I was put on a ventilator in the ICU for 5 days.

When I came to and was removed from the ventilator the doctor explained that I had a severe case of pnuemocystis pneumonia and that they had tested for HIV and it was positive so they did a viral load & CD4 count.  The doctor told me pretty much  "Your VL is >2 million and your CD4 count is virtually nonexistent, you are very sick" and based on the numbers I was likely infected 7-10 years with knowing.  Then he said the good news is now we can treat the HIV infection and that he had several patients that had been in my circumstances and were leading perfectly normal lives.

The doctor put me on Symtuza and I have not missed a dose so far.  It took about 10 months to get my first ND results and my CD4 has been bouncing around 200-220 for the last year.  It was a lot of work in occupational and physical therapy to get back to almost my old self and I was out of work over 6 months.  My VL popped up to 60 and then to 110 on a couple of subsequent labs and my doctor was worried about resistivity and tested for that, turns out it was not resistivity and my VL returned to ND in April.

I learned the hard way that we need more factual education about this disease.  I thought I could tell who looked healthy, because I saw AIDS in action in the 80's and 90's as a young gay man going to the clubs.  I also wrongly believed if infected that I would have had symptoms and whenever I wasn't safe I fooled myself into thinking that the risk was minuscule.

Clearly, I was very mistaken and wish I had been better informed.  Since my diagnosis, I have been reading a lot about the disease.  I have a second chance at life now, so I am trying to stay healthy this time around.  My hope is to one day be a long term survivor.

Anyway, thanks for the place to say this anonymously.

[Jim Allen]

Hi Brian,

Thanks for sharing your story. Sorry, to hear about how sick you were but glad you are doing much better now. 

Then he said the good news is now we can treat the HIV infection and that he had several patients that had been in my circumstances and were leading perfectly normal lives.

Yup, many of the members here had AIDS with single-digit CD4s and VLs in the millions and are living happy & healthy lives today.

I thought I could tell who looked healthy, because I saw AIDS in action in the 80's and 90's as a young gay man going to the clubs.  I also wrongly believed if infected that I would have had symptoms and whenever I wasn't safe I fooled myself into thinking that the risk was minuscule.

Thanks for sharing this and being so honest.

My VL popped up to 60 and then to 110 on a couple of subsequent labs and my doctor was worried about resistivity and tested for that, turns out it was not resistivity and my VL returned to ND in April.

60 & 110 is not even a blip*

This is a fully suppressed viral load (UD), job done and you are only in the first year +- of treatment so it's not that uncommon to see "micro" blips, For example, this can be things like defective copies being released from the HIV reservoir that are incorrectly counted. 

Anyhow, the goal of HIV treatment is not to be "undetectable" for your clinic's lab test/report but to suppress the viral load below 200 and the VL is always there and detectable, it is just sometimes below that particular lab's threshold to detect, which can be a threshold of 200,150,50,20,10 or in some research settings 1 copy.

Sorry for the long reply but I thought it was important to mention.

I learned the hard way that we need more factual education about this disease.

100% We need much better sex education for sure. In addition, I think society's attitude towards sex needs to change but that's a difficult one.

I have a second chance at life now, so I am trying to stay healthy this time around.

Good stuff.

Well welcome to forums and keep us posted, we are here if you need us.


*
Prof. Fiona Lyons (HIV in 2024)
https://forums.poz.com/index.php?topic=77637

Low level VL linked to defective copies released from viral reservoir
https://forums.poz.com/index.php?topic=77301

Reporting VL below 200 - “harmful medical practice”
https://forums.poz.com/index.php?topic=77575

"What’s All This Fuss I Hear About Viral “Blips”?

Blips
http://i-base.info/guides/changing/viral-load-blips

Viral Blips Don't Raise the Risk of HIV Treatment Failure
https://www.poz.com/article/viral-blips-raise-risk-hiv-treatment-failure

http://www.aidsmap.com/Spanish-study-gives-reassurance-small-HIV-blips-do-not-predict-treatment-failure/page/3085173/

What’s All This Fuss I Hear About Viral “Blips”?
https://academic.oup.com/cid/article/70/12/2710/5573119

Q&A on persistent low-level viremia.
https://www.healio.com/infectious-disease/hiv-aids/news/online/%7B8373ca63-674d-4015-ac35-f4da653c7415%7D/qa-understanding-persistent-low-level-viremia-in-people-with-hiv

[Brian1966]

Thanks Jim,

The information about the viral blips and UD vs suppressed is something I didn't know until I came to this forum.

It's was a very tough haul, I ended up with all sorts of other issues when I was hospitalized, and it was close to 2 months total in the hospital.  I had a rather bad wound form on my butt, it was large and equivalent to a chemical peel that went very wrong and it couldn't heal well because of my health at the time.  I ended up getting a temporary colostomy, finally healed and had it reversed and then got a hernia as a complication to those surgeries.  My lungs are much better and there are only a couple of nodes left in one.  My heart is mostly back to normal, but the right side was enlarged from my lungs performing so badly.

I consider myself to be very blessed and very lucky to be here and recovered as much as I have, I have a few lingering minor things but in balance I feel amazing.

I hope anyone getting a new diagnosis finds this forum sooner than I did.  It has been a wealth of knowledge from everyone who is king enough to share their experiences.

I'm hoping to see my T-cell count improve, I've done a few courses of Bactrim and I am currently not taking it.  I would love to not need it going forward.

 

[Tonny2]

                ojo.         Hello Brian, welcome to the forum.  I’m sorry for your diagnosis, and all that you went through, but I’m glad that you started treatment and you are recovering. I was on your same situation almost 30 years ago when we used to make plans for our funeral. Nowadays, you can steal make plans for the future because of they highly effective treatment we have.… what you said about not having enough information I think that after 40 years of this pandemic it is no the lack of information. I think it is the fear to get tested, my humble opinion. But anyway ,the good news is that you know that you have it now you treat it, and you are going to be fine as long as you take your medication and now that you are positive you got to be more positive about life… You are not alone we are here for you if you need help in coping, support, and information, we have too many longtime survivors in this photo including myself… Good luck and please keep us posted.… Hugs

[leatherman]

I would love to not need it going forward.

so because I had PCP twice, I stayed on bactrim for 10 years before my cd4s held stable over >250. Of course, I had a terrible time recovering when I had those 2 bouts of pneumonia in the late 90s and that's why I took so long to get over 250.

So think about the Bactrim this way, wouldn't you rather take it, no matter how long, to NOT be hospitalized again (or worse, perhaps die) with PCP? When it's put that way, Bactrim doesn't sound so bad does it?




funny, but not in a funny way, a couple years ago I had a prostrate infection (woohoo! young guy issue for this old guy. lol) and when they offered bactrim or cipro (which I had never taken) I jumped for my "favorite" life-saving med! To end up in first-care with a serious allergic reaction. So while I still love bactrim, it doesn't love me anymore.

[Brian1966]

I totally get that it will hopefully keep me from another trip to the hospital and if I need it I’ll take it without complaining but if I worry too much about it not working anymore or developing adverse reactions.  It’s silly, I know because it worked for so many months but wonder about any long term effects or developing any resistance to any drugs, especially the HIV meds.  So far, so good with the results.

Thanks for the insights and sharing your experience.

[leatherman]

I worry too much about it not working anymore or developing adverse reactions

If you haven't had adverse reactions to Bactrim yet (within the first 4 doses), there won't be any reactions. And antibiotics don't just stop working.

wonder about any long term effects

um, let me check. Well.....you won't die an early death of AIDS. That's it. That's the long term effects of ARVs.

developing any resistance to any drugs, especially the HIV meds

resistance only happens when you haphazardly take your meds. If you take them 3 days, then skip 2 days, then take them 2 days, then skip 3 days.....etc. But when you take your meds every day (perhaps missing maybe one a month), there's no way resistance can happen.

[Tonny2]

               ojo.           @Brian, you just got an aids dx, that’s enough to worry about. I always tell everybody to not worry, and you have something to worry about.. first of all if you’re bactrim stops working, I doubt it as erll as your arvs, you have other options of treatment, so plrasr relax and try to concentrate in recovering and feel positive about getting a highly effective med, as you can see it that is kicking the virus. Your doctor will tell you when to stop bactrim,
Treatment. but the way, i’m allergic to it, got hives with first dose that’s why i got three times pcp. So, do not worry, your treatment us working, by the way, i’ve been taking the same treatment  since January 2007and it is still working even though i’m a guy with a history of resistance.
Wishing you the best and please keep us posted


Ps. i’m sorry for the typos.

[Jim Allen]

If you haven't had adverse reactions to Bactrim yet (within the first 4 doses), there won't be any reactions. And antibiotics don't just stop working.

cotrimoxazole, oh so much fun.

The first day, it made me break out in hives, itchy and all sorts of issues. As there was no really good alternative here at that time I got antihistamines along with it to manage the hives, rash and itchiness,  Loperamide to control the explosive shits, additional labs to check it wasn't causing other issues and was told to go to the emergency room if my breathing was affected or things got worse but to keep taking the cotrimoxazole otherwise I would be proper fucked

I was so glad when my VL was suppressed & CD4 counts were up enough to stop taking it.

 

[Brian1966]

I just returned from my latest visit with the doctor and the results of my last blood work taken 7/18/24.

My CD4 was 234 and my VL was 31.  This is the third consecutive CD4 >200.  My VL was ND last test in April but now it's 31 and well below 200 like it's been for over a year so I don't have to go back for 6 months!  This is making me very happy that the doctor feels I am doing well enough and we have consistent numbers that I no longer need 3-month appointments.

[Tonny2]

                 ojo.          Congratulations!!… You are on your Way to learn how to live with this condition. Just keep taking your medication as prescribed and keep your every six months appointment with Dracula and Doctor.…hugs