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. :)
--- Quote ---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. --- End quote ---
Yup, many of the members here had AIDS with single-digit CD4s and VLs in the millions and are living happy & healthy lives today.
--- Quote --- 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. --- End quote ---
Thanks for sharing this and being so honest.
--- Quote ---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. --- End quote ---
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.
--- Quote ---I learned the hard way that we need more factual education about this disease. --- End quote ---
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.
--- Quote ---I have a second chance at life now, so I am trying to stay healthy this time around. --- End quote ---
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”? 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:
--- Quote from: Brian1966 on July 01, 2024, 11:28:40 am ---I would love to not need it going forward.
--- End quote --- 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. :o ::) :o So while I still love bactrim, it doesn't love me anymore.