Textbook case of HIV but still negative at 12 weeks

[Roastbee]

I had a high risk exposure and one month later got red dots on my stomach and a very bad flu like illness a couple days later. That came with diarrhea, severe night sweats, weight loss, thrush and changes to my vision. It’s been almost 3 months since then and I now have more thrush, diarrhea and boils/red spots on my chest and back now. Also a massive cold sore outbreak.

I’ve been doing 4th gen tests with no luck. I did an RNA test through quest diagnostics as well with also a negative result. But it doesn’t detect all strains. My concern is that I have a rare or new strain that the tests aren’t picking up. I’m completely immunosuppressed with all other STD tests negative.

[Galen70]

Ok first of all there is no "textbook case " - there are symptoms that about 4/10 people get during seroconversion, not all people get them , and they can mimic any viral infection. Secondly - what is your high risk exposure ? 4th Gen test will pick up HIV infections, and if you have taken the extreme step of having an RNA test and its negative, well that excludes HIV 1 . HIV 2 is very uncommon globally , and serology usually will detect it anyway on a 4th gen test. Did you take PEP or PREP around the time you felt you were at risk ? Have you done tests for other conditions that might cause immunosuppression ? like leukaemia ?

[Roastbee in reply to Galen70]

Thanks for your reply

My high risk exposure was unprotected sex with another man. And it wasn’t a one time thing, there were 3 exposures. One in September, October and the last one was November 20th. I noticed the red spots on my stomach just before the November exposure but didn’t think much of them. A couple days later (November 22nd) I fell violently ill. I believe I contracted it during the October exposure as a result of the incubation period being a few weeks. No I wasn’t taking PREP or PEP.

Though there isn’t an exact textbook case of HIV this one matches the stories of other people I’ve come across. The non itchy trunk rash, diarrhea, thrush and the cold sore make it pretty obvious. In late December I got a CD4 count done and it was 689. That’s on the low side and well below average for a caucasian male from my research. I will be tracking my CD4 counts going forward as evidence. I’ll be doing another one soon.

Leukaemia is a possibility but it would be too much of a coincidence for it to be that after such a high risk exposure. I will investigate it nonetheless.

I’m sitting at 3 months since the last exposure, I will give it more time for the antibodies just incase. The RNA test I did only detects group M HIV1.

[Galen70 in reply to Roastbee]

Doing a CD4 count is not a way to determine your HIV status. You are making the classic mistake of assuming the CD4 count is a fixed level. The blood test is a **range** meaning anything within this range is normal. So if the range is between 300 - 1200 , this does NOT mean that someone with a count of 310 has a low CD4 count - its normal . Your blood is a soup and measuring 5mls of blood at one point in time is not an accurate global picture . Do you know the CD4 % ?

HIV 2 is almost exclusively in heterosexuals from one particular part of Africa , or with connections to there.

You are conflating several different symptoms here to convince yourself you are positive. I am concerned there may be another issue here that may be missed while you pursue what is extremely likely to be a negative result. Did you test for hep B/C/syphilis ? Is a doctor investigating your symptoms ?

[Roastbee in reply to Galen70]

I know the CD4 count varies but if I notice it dropping in the coming months that’s a definite sign. Especially when it goes below 500. Nothing else preys on CD4 cells like HIV. I don’t know the % I will get from my doctor next time. As well as CD4:CD8.

I have another appointment next week where I will request a CBC to be done and whatever else he thinks is necessary. But it’s no coincidence, high risk sex and then a month later coming down with these symptoms. It’s pretty obvious in my opinion, I’m not anxious about it either I am ready to live with HIV. I felt completely fine before I had this encounter.

The symptoms are definitely related to one thing, immunosuppression. They all fell at around the same time showing that this is a viral infection for sure. I wouldn’t be so sure about this if I was missing some of the symptoms or if it didn’t hit me so hard. I can’t even climb a set of stairs anymore without being out of breath. And the thrush is worsening on my tongue.

[Galen70 in reply to Roastbee]

May I ask where you are living ? I am not sure what CBC is ? Remember that post viral symptoms can happen after other viral infections including EBV ( Epstein barr virus, glandular fever ) .

Your CD4 count could be naturally lower on the next blood test - you cannot assume this is " a definite sign " . Some peoples CD4 count are naturally below 500. This doesn't mean they are HIV positive.

You didn't say if you had been checked for syphilis or hep B/C .

You have had a HIV RNA which was negative. This means you don't have HIV. If you are having the other symptoms you describe, you need to be seeing a doctor to explore other causes.

[Galen70 in reply to Galen70]

Also if you seroconverted recently, you would have recovered by now , and your CD4 count would be back towards normal range. The breathlessness you are talking about would only happen with advanced HIV and PCP pneumonia. If you are that breathless , you need to be investigating that urgently.

[Roastbee in reply to Galen70]

I’m in Canada. By CBC I meant complete blood cell count.

I did get checked for all other infections. All results were negative.

I already have Epstein Barr virus so that has been ruled out. Also herpes viruses don’t hit this hard. They are slow and progressive because they replicate so slowly. HIV replicates extremely quickly and will hit very hard.

I will be tracking my CD4 over the next year or so to see what the trend is. I know the next test could show no change. But if the CD4 % is below 40 that’s another sign. Or a CD4:CD8 ratio of 1 or less.

Advanced HIV symptoms can show in acute infection such as chronic diarrhea, thrush, rapid weight loss and breathlessness. It happens. I am only breathless when climbing stairs or running. I can still walk okay but that will likely get worse too.

[Galen70 in reply to Roastbee]

Roastbee , you are reading far too much into your symptoms. You need to go to discuss this with either a sexual health doctor, or an infectious diseases one. I do not understand what you mean about herpes viruses being "slow and progressive " - this simply isnt true. So you are saying you are going to remain in a limbo over the next year , convincing yourself all of your negative tests dont mean anything , and if you happen to one one random blood test, have a CD4% of less than 40 , that you are HIV positive ?? This is not a sustainable situation. Go to a clinic, talk to a specialist , and even consider seeing a a clinical psychologist. You certainly may have symptoms, but as I said before , if you are having the severity of symptoms you described earlier, that needs separate and urgent investigation.

[Roastbee in reply to Galen70]

I have no choice but to monitor my blood cell counts and CD4 numbers if my tests keep coming back negative. I’m completely immunosuppressed. My doctor can’t find any other disease that would cause all this. It is likely an HIV mutation that the tests cannot detect.

[Galen70 in reply to Roastbee]

This simply does not exist. HIV can indeed mutate, it is one of the problems why we can find a cure yet, but resistance mutations are still detected when we do a viral load and a resistance test on that viral load. So with a direct RNA test - which you had - HIV would be detected.

You do not have HIV , given the tests you have had done. You cannot be "completely immunosuppressed " as your CBC would reflect that. You need separate investigation for your symptoms. Don't make the mistake of endlessly pursuing HIV as a diagnosis because of your anxieties , if you have another illness that needs investigation.

[Roastbee in reply to Galen70]

There’s no other explanation that my doctor can find. All other tests and diseases are negative. I’m getting angular chelitis now which is another sign of HIV. I can literally see myself getting more and more immunosuppressived. HIV does replicate and mutate more than almost any other virus we know of. Not only is it a problem for a cure but it’s a problem for diagnosing it too with genetic variants the tests can’t find.

I’m going to test up to the 6 month mark and if nothing shows up and my blood cell counts aren’t great and symptoms persist I’ll have no choice but to reach out to HIV researchers or people in the field that can help me with identifying this strain. I’ll travel abroad and pay for it if I have to. I have no problem living with HIV and I have no anxiety over it. I just don’t want to die because the tests couldn’t pickup my strain.

[Galen70 in reply to Roastbee]

Roastbee my advice still stands . What you said simply doesn't make sense. If there were undetectable strains of HIV out there, we would have thousands if not hundreds of thousand of people by now who were becoming unwell. No matter how much the virus mutates , we can still detect it, we can even detect those mutations and base treatment around them. I'm afraid I simply don't have anything more to say .

[Roastbee in reply to Galen70]

Thanks for your insight I do appreciate it. I don’t think this is a common issue at all. I agree that we can still detect mutations but there are outliers such as this one the tests aren’t getting. It definitely doesn’t happen often but there are similar stories online of people who have gone through the same thing.

I will post updates on my blood cell counts and condition in the coming weeks and months. And research natural HIV remedies as that’s all I can go on right now

[Galen70 in reply to Roastbee]

You are making the basic assumption here that you are positive. And from the tests you have done, you are not. Where are these cases of people being positive who have tested negative ? What about getting the guy you had sex with to test ? if that is possible ? if not then im concerned you will waste time energy and money into a problem you don't have. And there are no natural HIV remedies I am afraid.

[runlif in reply to Roastbee]

Roastbee , what is your current situation. is everything ok ?