By the numbers

[AreYouSure]

Hello everyone. I am a guy, diagnosed HIV positive in January 2018. I went to get tested because I found out my ex was HIV+ and hospitalized with meningitis and encephalitis (which are AIDS defining illnesses).

This is about her and my lab results which are after reading the forums puzzling to say the least.

My girlfriend was treated for OIs for 3 weeks and were sent home afterwards. Unfortunately no bloodwork was done at that time but she went on ARV (EFV/TDF/3TC) right away. After 60 days on ARV I took her to the lab and her VL was UD and CD4 was 573.

I had my test done in January and mine were VL 232 and CD4 1001.

To me the puzzling parts are her CD4 and my VL. How could she have "full blown AIDS" 2 months prior and have relatively high CD4 only 2 months later. How can I have a viral load of 232 copies after being together for 4 years. We have been separate for 12 months at this point so even being infected for 12 months should not my VL be higher?

In the end it does not matter but to me based on everything I have read so far these numbers seem outlier. I am not on ARV just yet until I figure out what's going on.

[Jim Allen]

Its not puzzling at all. I'm not sure why this puzzles you in the slightest.
Nobody works by the numbers anymore since the outcome of the "start" and related  studies a few years ago.

https://forums.poz.com/index.php?topic=2276.msg738372#new

there simply is clear-cut proof that of the significantly greater health benefit to an person living with HIV starting antiretroviral therapy sooner rather than later, treatment should start regardless of viral load or cd4 counts.

Hence updated guidelines recommended not to wait anymore with treatment and that anyone infected with HIV including so called Elite Controllers should begin antiretroviral treatment as soon after diagnosis as possible.

This is about her and my lab results which are after reading the forums puzzling to say the least.

My girlfriend was treated for OIs for 3 weeks and were sent home afterwards. Unfortunately no bloodwork was done at that time but she went on ARV (EFV/TDF/3TC) right away. After 60 days on ARV I took her to the lab and her VL was UD and CD4 was 573.

I had my test done in January and mine were VL 232 and CD4 1001.

To me the puzzling parts are her CD4 and my VL. How could she have "full blown AIDS" 2 months prior and have relatively high CD4 only 2 months later. How can I have a viral load of 232 copies after being together for 4 years. We have been separate for 12 months at this point so even being infected for 12 months should not my VL be higher

She treated her OI's started HIV treatment and her immune-system slightly recovered. Not sure what is so puzzling about this?

CD4 counts are just snapshot moments and If you test twice in the same day the number can vary more than a 100 points. Pointless to worry about them or try to use they from someone else to figure something out when its simply irrelevant.

That said OI's can happen at any stage of a HIV infection, its just far less likely with a stable higher CD4 and medically suppressed VL.
 
You are not your girlfriend, so why try to draw a comparison?
You both are two different people and your natural or "normal" CD4 levels and immune system strength & response will be different.

Some people progress very fast and other take years without treatment, age, sex also play a role and also you don't know your start point was as a negative person as that will be different between people, If you take the negative population it varies between 500- 1200/1500 ish.

Maybe she naturally has a very good immune system and hence the quick bonce back after treating her OI's and HIV.

I am not on ARV just yet until I figure out what's going on.

My advice stop focusing on others first of all, her numbers or progression has no relation to you. I'm not sure why you want to understand her immune system before treating yours, you can't steal or copy her system from her

Here is the story, your HIV untreated even at low levels is rotting your insides and brain causing both measurable and unmeasured damage, waiting too long means some of this may be permanent damage including death.

Everyone regardless of counts is recommended to start treatment as soon as possible to prevent, what is preventable damage, for better long term health outcomes and reduce the risk of death.

Take it easy

Jim

http://betablog.org/start-trial-shows-benefits-of-early-treatment-supports-art-for-all/
People who start antiretroviral therapy (ART) immediately after they are diagnosed with HIV, while their CD4 T-cell count is still high, have a lower risk of illness and death

https://www.poz.com/article/START-results-27299-8892
Gold-Standard Evidence Backs Early Treatment of HIV

http://www.medicalnewstoday.com/releases/285972.php?tw
"Delaying ART in patients with HIV reduces likelihood of restoring CD4 counts"

https://www.poz.com/article/Antiretrovials-Reduce-Cellular-Inflammation-Among-Elite-Controllers-of-HIV-23608-3878
Antiretrovials Reduce Cellular Inflammation Among Elite Controllers of HIV

https://www.poz.com/article/hiv-cardiovascular-elite-controllers-23015-5910
Cardiovascular Disease Risk Remains High in HIV Elite Controllers

"Elite Controllers Hospitalized More Often Than Those Treated For HIV"   
https://www.poz.com/article/elite-controllers-hospitalizations-26678-5093

ECs on average spent more than twice as many nights in hospital than people on ART, and about 50% more than people not on ART and with detectable viral loads.
After adjusting for various differences between the EC and non-EC population, the study still found that ECs were 56% more likely to be admitted to hospital than
people with undetectable viral loads on ART.

Crowell TA et al. Elite controllers are hospitalized more often than persons with medically controlled HIV. Journal of Infectious Diseases, early online publication. doi: 10.1093/infdis/jiu809. 2014.

Karris MY and Haubrich RH. Antiretroviral therapy in the elite controller, justified or premature? Journal of Infectious Diseases, early online publication. doi: 10.1093/infdis/jiu812. 2014.

Cockerham LR and Hatano H. Elite control of HIV: is this the right model for a functional cure? Trends in Microbiology, early online publication. doi: http://dx.doi.org/10.1016/j.tim.2014.11.003. 2014.

[CaveyUK]

Hello everyone. I am a guy, diagnosed HIV positive in January 2018. I went to get tested because I found out my ex was HIV+ and hospitalized with meningitis and encephalitis (which are AIDS defining illnesses).

Was the type of meningitis actually stated by the doctors? I ask because there are various kinds of meningitis, many of which are seen in the general population (I work with two people who have been hospitalised in the past with it who I'm pretty sure are HIV negative). The AIDS-defining one is Cryptococcal Meningitis, which is seen in people with severely impaired immune systems, and in the case of HIV, is generally seen where the patient has fewer than <100 cd4's.

There is also a form of meningitis which can occasionally happen as part of acute HIV infection. In fact, just about any viral or bacterial infection has a risk of meningitis attached. There is an increased risk of meningitis amongst HIV+ (at any CD4 count) folk compared to the general population, but this is all but mitigated by adherence to treatment which is why getting on and sticking to an ARV regimen is so important.

I've no doubt that HIV was diagnosed as a result of her hospitalisation, I just question given her numbers whether she had crypto specifically or whether the presence of both diagnosis have led to an assumption.

This is about her and my lab results which are after reading the forums puzzling to say the least.

My girlfriend was treated for OIs for 3 weeks and were sent home afterwards. Unfortunately no bloodwork was done at that time but she went on ARV (EFV/TDF/3TC) right away. After 60 days on ARV I took her to the lab and her VL was UD and CD4 was 573.

I had my test done in January and mine were VL 232 and CD4 1001.

To me the puzzling parts are her CD4 and my VL. How could she have "full blown AIDS" 2 months prior and have relatively high CD4 only 2 months later. How can I have a viral load of 232 copies after being together for 4 years. We have been separate for 12 months at this point so even being infected for 12 months should not my VL be higher?

In the end it does not matter but to me based on everything I have read so far these numbers seem outlier. I am not on ARV just yet until I figure out what's going on.

Well, as I said, unless it was a confirmed cryptococcal diagnosis, it may not be the AIDS-defining type (I don't think anyone uses the term 'full blown' anymore also). That would certainly explain why her CD4's are so high. Do you know her CD4 count at the time she was hospitalised? Having one number without the other won't help you get any form of understanding really.

It's the same with your numbers also. You really need another blood test to see what's going on - there is always the possibility of lab error, which shouldn't be discounted but you will see that on a subsequent test. If indeed, you have a detectable but very low VL then you could be a 'controller' which may sound great but research shows that this can lead to other serious health issues, hence the general advice nowadays being for everyone - controller or not - to get on antiretroviral treatment straight away.

Whether you acquired the HIV infection from her, or vice versa, the good news is that you both have CD4's in the normal range, and if you both get undetectable from meds then there is no reason you both can't live a long and healthy life.

If I were you though, I wouldn't hang around too long before starting treatment yourself. Whatever you VL is, you should take control and get it down to fully UD levels, and then get on with your life.

[leatherman]

How can I have a viral load of 232 copies after being together for 4 years. We have been separate for 12 months at this point so even being infected for 12 months should not my VL be higher?

before explaining this bit, let me say I totally agree with Jim. Your health status and your girlfriend's health status are two completely unrelated things. These are two different issues that you must tackle separately. You need to get onto ARVs as soon as possible to improve YOUR health.

now to your question.
first remember, this chart is a very generalized graph of an HIV infection

Ignore all the numbers for the time being and follow the red line representing the VL. You can see that at the initial infection, the VL rises before dropping back down. if you follow the line after that (from the "//" to about 10 yrs), you should notice that, after dropping back down, the VL line gradually rises. For some people this can be a step rise and for some people a fast rise (reducing the 10 yrs estimated span). But for most people, it's a slow nearly decade long climb for untreated HIV to become "advanced HIV" i.e. "AIDS".



Since we can't say exactly when you were infected with HIV (let's say some time in the 4 yrs when you were having sexual relations with this partner), what we could guess is that your VL seems to have declined to a very low number after the initial infection and has been holding in that low range.

Of course, there's no telling exactly how long you might have a VL this low nor when you might see your VL begin to climb. And that's exactly why YOU need to begin treatment. If it's early in the infection, early treatment will stave off a lot of potential health care issues in the future. If it's further along in the infection (say 5-ish years), and you have a VL this low, all the more reason to start meds ASAP so that HIV never has a chance to do serious long-term damage to your immune system.

[AreYouSure]

Thanks to everyone responding. I have been lurking on these forums for some time and keep coming back because of the great information and support you are providing.

I am familiar with the START study and have no doubts about it. I believe everyone should go on ART regardless of how good their numbers look like. The reason I have not started on ART yet is because I am far away from home.

When I found out that my girlfriend fell ill I flew out here to this third world country (I'm sure the mods can see where). The first priority was to get her immediate medical care. This was on Christmas Day and I spent New Year's Eve at the hospital as well.

In response to CaveyUK she did have Cryptococcal Meningitis which was confirmed by lumbar puncture. You guys are very knowledgeable. She was on Fluconazole and intravenous Amphotericin B for 3 weeks. I used the term "full blown AIDS" with quotation marks for illustration. It was like an 1980s AIDS documentary. An absolute nightmare.

Thanks to modern medical science she is doing very well now. The family did burn all her clothes and possessions. They were certain she would die. Her recovery was like something you read in the late 90s AIDS literature when HAART became available.

In response to Leatherman I have been infected for less than 4 years as I had HIV tests done within that period. I have reason to believe it happened around December 2016 just before we broke up. I am not downplaying the gravity of the situation. I had my initial tests done here (insert third world country) and need to get my ass back home ASAP to deal with it.

Thanks again for taking the time answering my questions. If nothing else this could be another story or a data point for others to learn from. Rest assured I will be getting started on the meds real soon.

[Jim Allen]

Its very commendable helping your ex when you found out she was sick.

Personally I would first got myself sorted before flying out. As you have now  delayed starting your treatment, running a greater risk of infection and flown to a nation not known for its kindness in such matters. 

Look after yourself.

Jim

[AreYouSure]

Thanks Jim. Before I left I had no idea what was coming. I just got myself a new girlfriend and a puppy back home and was looking forward to the next chapter in my life. Then I got a message from the family that my ex was very sick and dying. They knew but did not tell me the truth.

I got here then it all came at me very fast. The doctor told me about her status and also strongly suggested I should get checked. I was in the denial phase for about a week then one morning I went to get tested. Next day I was handed a sealed envelope and told to open it myself.

Things are better now but I don't have a girlfriend or a puppy anymore.