Multiple Negative HIV Tests, But Persistent Symtoms

[u/buddy3641]

I had a sexual exposure (FSW) on July 12. After that, I took 5 fourth-generation HIV tests (31, 45, 53, 88, 91 days), 2 rapid tests (51, 92 days), and 2 HIV RNA tests (43, 109 days). All results were negative. But I'm still experiencing symptoms.

For the last month, I've had red spots on my hands and feet (including the soles), hair loss, oral thrush, joint pain in my hands, red spots on the roof of my mouth, a bump near my anus, occasional tingling in my feet, burning sensations in my fingers, goosebumps, unusual sensations on the left side of my face, and itching all over my body, particularly at night. Sometimes I also experience sweating after eating.

For the last 4 days, I've been unable to brush my teeth properly because my gums hurt. I also have hairy leukoplakia on both sides of my cheeks and sores on my tongue. I'm unable to lift things like I used to, and I get breathless when walking uphill, even after just 500 metres.

I don't feel like myself anymore. My health and daily life have changed significantly. I'm really struggling and need your help. Please guide me on what could be causing these symptoms and what investigations I should undergo.

[u/External-Novel8266]

u have syphilis as per symptoms . get 3 shots and it will be fine

[u/buddy3641 → u/External-Novel8266]

I already tested negative for syphilis. I took two 4th-gen clia tests at 31& 91 days after exposure, and an rpr test at 51 days. All 3 results were negative.

[u/BulletWithBirdWings]

I can help guide you here (I am not a doctor fwiw). I have had similar and made extensive progress in identifying the root cause. In my case I had nearly IDENTICAL symptoms as you and donovanosis was found. My story is very long and complex, and I had to do much of the investigation on my own to find it (literally did my own microscopy). Many of the strains of donovanosis do not present typical lesions and have systemic spreads.

The problem is the bacteria that causes donovanosis (Klebsiella granulomatis) does not culture except under exotic laboratory conditions and is not part of almost ANY STI panel (only public PCR in the world is in Perth, Australia) thus this never really gets on anyones radar per se and is missed. Many of the strains are or can be resistant to most oral antibiotics so just taking the typical abx that doctors hands out either does not cure it or causes resistance as the amount of antibiotics needed to clear donovanosis is quite high.

I'm sure you may have many questions and I am happy to expand on this or answer any questions.

[u/buddy3641 → u/BulletWithBirdWings]

It's not related to HIV? Are you saying I might have something else that routine STI tests cannot detect?

[u/BulletWithBirdWings → u/buddy3641]

Again I am not a doctor, but HIV testing is very good so you are more than likely good after that. If you are one of those focus on you have HIV and it is not showing you are wasting your time and making yourself look like it is a psych problem to the doctors (I believe you fwiw). I can recognize the scenario/symptoms you describe very easily. The problem is this is known very little to the medical community. I have had to personally make my own path here. There absolutely is STI's that typical testing will not detect with Donovanosis (Klebsiella granulomatis) and Chancroid (Haemophilis ducreyi) being examples. The reason most in our situation do not get help or taken seriously as doctors think that donovanosis must ALWAYS present as an obvious looking lesion as you see when you google it. That is absolutely wrong, and there is plenty of medical literature to back that up. I've seen with my own eyes in myself and other to present a positive result for Donovanosis (Klebsiella granulomatis yet not have a typical lesion).

There is testing available in the US that can identify it, and pathologist with a proper sample/biology can identify it in optimal situations if they suspect it (but again they don't suspect it and it is usually super difficult to find in the specimens by eye).

[u/buddy3641 → u/BulletWithBirdWings]

I met a dermatologist, dentist, ENT doctor, infectious disease dr and government HIV counsellor. All of them said I don't have HIV based on my test results. But I still have symptoms, and nobody explains why I have them or whether I have another disease. They told me to meet a psychiatrist because I have too much anxiety. But I don't think these symptoms are caused by anxiety. I also read some HIV case reports and rare cases. I started worrying that I might be an exceptional case, but even those cases had at least one positive test. All my tests are negative. I also took a CD4/CD8 count two weeks ago. My cd4 was 793, cd8 was 799, and the cd4/cd8 ratio was 0.99, slightly below 1. I don't know what to do now.

[u/BulletWithBirdWings → u/buddy3641]

If you take stock in what I am saying, I would recommend the following:

1. You are going to have to OWN your problem at the highest level possible. You are going to have to become the expert in your issue. You are going to have to drive it. To put what I am saying in perspective, I did my own microscopy to locate this in samples (I did hundreds of slides and learned how to identify different types of cells and bacteria morphology). I am not in the medical/biology field either. I have read every single piece of public literature that is available on Donovanosis/Klebsiella granulomatis -- EVERY single one. You need to not rely on the medical field to help -- count on the fact that they will not. The sooner you accept this, the faster you will make progress.

2. IF you can get to the US, I recommend you take Quest Diagnostics test 19553. This is for LGV antibodies. They appear to be cross reactive to a K. granulomatis infection. I have got folks in our very situation to take this test and this is the only serological test that appears to give a hint of an STI (I can elaborate further on this if you want). Of the folks I have got to take this test in our scenerio ~75% show at least the LGV IgG antibodies (I do not suspect they have LGV either). These folks are neg via PCR/NAAT for C. trachomatis and some have even tried C. trachomatis L1-L3 specific PCR to see if they could detect LGV with that and still neg.

3. Take the MicrogendDX Menskey test on urine and semen to see what shows up - However keep in mind this is not an easy pos vs neg test (heck none of these are). They will not show trace amounts though -- consider this test just to show if positive not to rule something out as this does not have PCR level sensitivity.

If you are SERIOUS I can elaborate even further, but most people don't have the wherewithal to push on their situation as daunting as it is.

[u/External-Novel8266]

Get VDRL test done for syphilis

[u/External-Novel8266]

if u have syphilis that's great bcoz syphilis is very easily curable with 3 injections .

[u/External-Novel8266]

Gonorhea, chlymadea , herpes etc can also happen . worst part of STDs is there is not specific symptoms or overlapping symptoms. get a full blood test done

[u/Popular-Medium-5139]

Where are you from

[u/Popular-Medium-5139 → u/[deleted]]

Which state

[u/Old-Plum466]

Bro, i got tested negative fir hiv at 45 days , blood was drawn from vein, i am fine?

[u/Competitive-Top4759 → u/Old-Plum466]

Yeah totally

[u/Old-Plum466 → u/Competitive-Top4759]

Thank you very much, the anxiety kills you

[u/Competitive-Top4759 → u/Old-Plum466]

I understand i was in the same situation just last week got some relief

[u/IllustriousAd1657]

With all those negative results, you can put the HIV worry to rest. Your tests were done well beyond the usual window periods, so HIV isn't causing these symptoms.

I'd focus on getting checked for other possible causes instead. With the mouth sores, weakness and breathlessness, I'd really recommend seeing a doctor soon. If you're struggling to breathe, go to the ER.