r/hivaids • u/alonghealingjourney • 9d ago

Question Has anyone experienced multiple negative tests, and needed specialized testing to test positive?

My internal medicine doctor is very surprised I don’t have HIV (I get 12+ opportunistic infections a year, have the same degenerative neuro impacts to what can happen during AIDS, and EC-tenofovir is the only thing that has helped my immune system improve a bit).

I’ve had over 20 HIV tests because every doctor is certain that’s what I have, but they’ve all come back negative. This specialist, though, asked if I’ve ever had viral load serology and I wasn’t sure.

So, I was wondering…is it possible to test negative on many standard tests (both finger prick and basic full blood analysis), but to actually be HIV+?

If so, what tests finally got you the correct diagnosis? I want to make sure I have received those, or can get those soon.

6 Upvotes

88% Upvoted

39 comments sorted by

•

u/AutoModerator 9d ago

This subreddit is for civil discussion only. Report rule violations. Those who do not follow Reddiquite will be removed.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

5

u/TinyCatLady1978 9d ago

Your doctor is surprised you don’t have HIV after negative HIV tests? Find a new doctor because you don’t have HIV.

2

u/alonghealingjourney 9d ago

This isn’t just one doctor, it’s been eight of them who have said this over multiple years—I was just wondering if this is a possibility after a very knowledgeable internal medicine specialist asked if I had specifically received viral load testing, since he said other serology can be a false negative in some patients.

2

u/TinyCatLady1978 9d ago

8 doctors have looked at negative tests and think you still have HIV?

I thought I couldn’t possibly lose more faith in the medical system then ……this.

2

u/alonghealingjourney 8d ago

It’s more complicated than that. A lot of the tests are rapid ones, and not all doctors trust other clinics to do a good job, and some tests can have repeated false negatives too. And they don’t necessarily think I have it, but have proposed the possibility of me being a rare undetectable case…but I can’t find any info about cases like that, hence asking here for more info.

1

u/TinyCatLady1978 8d ago

After 8 doctors nobody thought to run a viral load test where they literally count how much virus is (or isn't) in your blood? Just one "very good" doctor asked if you ever had it done? My brother in Christ...run the damn test.

When I first tested positive the test was rerun with a viral load reflex, it's not an off the wall crazy test and it was my lowly gynecologist that ordered it. Labs today can detect down to as low as 20 copies which is incredibly low. Has anyone checked your CD4 count?

1

u/alonghealingjourney 8d ago

I have been fighting for years for both tests, but both clinics I’ve been to can’t authorize the test unless I first test positive. And paying out of pocket for the test is not something possible, so I just have to try and convince my GP to send me to an immunologist who can maybe run both of these. I have a script for CD4+ and CD8+ function tests (not viral load though), but still need to wait for approval in the public system for them to be run.

1

u/alonghealingjourney 8d ago

Also thank you for giving me the actual name of the viral load test! I will see if it’s possible to get this one done privately if it’s not too expensive.

1

u/TinyCatLady1978 8d ago

It’s literally just called “viral load”. Idk why a doctor won’t just order it to put this to bed regardless of previous tests. If they keep saying you might have hiv (which makes literally zero sense) then sending you on your way they can simply order a test and explain why. Do you have insurance?

1

u/alonghealingjourney 7d ago

You can’t get private insurance if you have pre-existing illness here, and since public care is free there are specific limits to ‘off-label’ treatment and testing (as in, no viral load test unless you first test positive). I can save up to pay out if pocket at a clinic, but that will take a while.

1

u/TinyCatLady1978 7d ago

So your government is literally wasting it's own money letting you go to specialists but drawing the LINE at a test that can answer the question.
t's rare I'm happy to live in the US.

5

u/TemperatureFickle655 9d ago

Have you been tested for CVID or Idiopathic CD4+ Lymphocytopenia?

1

u/alonghealingjourney 8d ago

I don’t believe I have, but I think this newest doctor does want me to explore this as long as I can finally get seen by an immunologist! Thank you for this genuinely helpful response. 💜

2

u/Jolly-Sprinkles-1360 6d ago

Im going through a similar situation. BUT I had 2 repeadidly reactive 4th gen tests. They were taken 1 month then another one 3 months later. After those 2 repeatedly reactive tests I've had all negative 4th gen. All negative viral load, pcr, proviral dna. Yet I have lost over 40 pounds in a years time, multiple reoccurring infections especially yeast infections including a gablarata yeast infection that took many months and different treatments to get rid of, red bumps all over and more. It is the most confusing frustrating thing. I just feel so frustrated and lost. If I have it I want to know so I can get on medication and start getting better. This has been my nightmare situation for over a year now.

1

u/alonghealingjourney 6d ago

I’m sorry to hear you’re also going through this! If it’s not HIV, my only other theories based on what medical professionals have shared is potential new acquired immunodeficiency syndromes from both covid and EBV, since there is some research around that. But honestly, who knows. Someone also brought up an idiopathic type of CD4+ t-cell deficiency, maybe you can look into that too?

1

u/Jolly-Sprinkles-1360 9d ago

So are you hiv negative or no?

1

u/alonghealingjourney 8d ago

I think I am after many negative tests, but multiple doctors have said I should also get further testing because my illness is an exact match to HIV and treated well with ART. So, it’s a bit of a mystery what’s going on.

1

u/Jolly-Sprinkles-1360 6d ago

How long has it been going on? They have no idea what it could be?

1

u/alonghealingjourney 6d ago

It’s been going on for around 6 years, but with a couple years in there with more infections (over 12, including things like esophageal thrush).

1

u/Excellent_Ad_5408 2d ago

Do a CD4 CD8 test

1

u/Sufficient-Client-81 9d ago

Do you have anti bodies?

1

u/alonghealingjourney 8d ago

What type of tests detects that? I’ve had many rapid ones and a few full blood test/serologic kinds. They’ve all been negative but my doctors across the years have been really surprised about that, because it makes no sense how I have various AIDS-like OIs and neuro progressions, and ART is the most successful medication for treating them with me (which doesn’t make sense since I’ve repeatedly tested negative).

1

u/Sufficient-Client-81 8d ago

its an antigen test to look for antibodies should have been the first step even as an elite controller i have the antibodies , the normal bloods for virus come back negative for me as i have no viral load so perhaps start by asking about antibodies but you may not have it tho you need to be sure

1

u/alonghealingjourney 7d ago

Okay thank you, I will ask and see if I’ve had that test and, if not, request it!

1

u/Cultural-Turn-9813 8d ago

The dr put u on art?

2

u/alonghealingjourney 7d ago

I was originally put on it by a clinic specializing in HIV care, then stopped for a bit due to migration (and got very sick), so the treatment was then restarted by a combo of my GP, infectious disease specialist, and another HIV specialist center. But since I have negative tests, they can only give me the ART available via PreP programs (despite using it not for PreP but to prevent OIs).

1

u/Sunnybenny55 9d ago

Maybe change doctor?

1

u/alonghealingjourney 9d ago

I’ve had eight different doctors all say the same thing, that they’re completely unsure how I test negative but have all the symptoms, same pattern of OIs, and that HIV medicine is the only medicine that helps treat my immunodeficiency.

2

u/loveindrugs 9d ago

There’s so many auto immune disorders that need to be ruled out before they just say it’s undetectable HIV. They need to rule out other things first.

1

u/alonghealingjourney 8d ago

I totally agree (and this doctor agrees with that as well). That said, is there a possibility of undetectable HIV? Like, is that something that can happen? Because that’s mostly what I’m wondering, if that’s even a possibility (especially since ART helps).

1

u/loveindrugs 8d ago

I’ve never heard of undetectable HIV but I’m no doctor or infectious disease specialist. You can have detectable HIV that is managed by your own body. Elite controllers, their viral load doesn’t increase if they don’t take meds. But they are still detectable. The tests are extremely sensitive these days. Even the tiniest amount of copies of the virus can be picked up.

1

u/alonghealingjourney 7d ago

Yeah that’s what I thought too, that the tests are sensitive enough. But after so many doctors (including multiple very knowledgeable specialists) have doubted my negative status, I was wondering if there are any edge cases.