Elite Controller? Scared I have undetected Chronic or advanced HIV Stage

[FishingGuy1]

I have been dealing with a wide range of symptoms that point towards an HIV diagnosis but with multiple negative 4th generation AB/AG combo HIV tests and 2 recent non detectable RNA Quantitative tests that would point away from an HIV diagnosis. My main symptom has been progressive muscle (and weight) loss which has been going on for 2 years now with no apparent cause but which has rapidly gotten worse lately (not due to lack of appetite, GI issues, change in diet, change in exercise, etc). I am down 2 pant sizes because of it. I have had a host of other symptoms (also getting much worse over the last few months). The other symptoms included a 2 month unexplained cough (saw pulmonologist), Foot neuropathy, constant fatigue. I believe the unprotected male (me) to Female insertive exposure occurred during 2014 but I am not 100% sure as I have a few unprotected occassions of intercourse with woman over the past several years.

I have read several case studies that talk about Elite controllers who have undetectable long terms viral loads but somehow have evaded testing positive to antibody tests (or 4th gen combo tests) and sometimes even DNA PCR tests due to the extremely low viremia they have. I know Elite Controllers technically are only judged on undetected Viral Count and not stage of disease or CD4 count. Some have had advanced HIV disease and AIDs defining infectioons/symptoms. The only positive tests they had were indeterminate western blots that showed only a partial band or 2. I recognize most elite controllers still show positive on antibody tests. I also recognize the change of a male getting HIV from insertive vaginal sex is probably 1 in 2000 (I'm circumsized) per each unprotected encounter. I also recognize the chance of a female where I live is also very low.

I have not had any exposures since Nov 2017. Since then, I had negative 4th generation tests at 7 months out and 13 months out. Also undetectable RNA quant tests at 13 months and 15 months out.

I have had a ton of bloodwork, fecal studies for bacteria or parasites, CTs, MRIs, Xrays, Colonoscopies, EGDs and ultrasounds scans  done over the past couple years to rule out just about every other cause (especially for undiagnosed malignancies, GI potential issues) for the weight/muscle loss... and all have essentially come back normal. I have seen several specialists (hematologists, neurologist, GI docs, Infectious disease doc, nutritionists and my primary doc a million times, etc and all of them have no idea what the issue is given the diagnostic work that has already been done and are not going to run anymore tests (at least for now)

In terms of bloodwork, the most remarkable thing on there has been decreasing lymphocyte counts. It was generally around 2 and then went down to 1.61 2 months ago and was down to 1.51 4 weeks ago. My most recent CBC from last Wed had my total White blood cell count up to 13.1 with 10.1 neutrophils (and 1.98 lymphocytes) which would indicate some type of infection except that my CRP was .6 which would make that pretty unlikely

At this point, my doctors aren't running more tests as they feel they have exhausted all avenues including the HIV path.

There will probably be an issue with any other new HIV testing that may be done in the near future in that my pulmonogist advocated that I get a flu shot when I saw him a week & half ago. I know the vaccine can screw up antibody tests or western blot tests If I was to have additional testing in the next month or 2. I would have said no to the shot if I realized it could screw up my HIV testing or even mess up future CBC counts or even CD4 counts if they run those.

I don't know where to go from here and I'm terrified. My doctor just put me on a low does SSRI (lexapro) a week ago and I just started therapy to help me deal with the stress and anxiety I am dealing with from not knowing what is wrong with me.

Should I push for more HIV testing? If so, how do I deal with it given the Flu Shot I just had.

I know we are supposed to trust tests over symptoms but this is pretty compelling at this point

[Sara_MHModerator]

Our members have given their best answers and it is the consensus that your tests indicate you are negative and theories that there is  reason to believe otherwise are baseless.  We are closing this discussion and wish you the best.

***  thread closed ***

[mike_no]

Great, so we achieve the objective. If you missed the p24, which is very difficult. You didn't miss at NAT. Therefore, it's time to rest the conspiracy theory and it's time to woohoo! You don't have it.

You win, HIV loses. Move along, brother. Every thing is alright.

[mike_no]

You have clearly spent a lot of time on the internet reading about HIV. However, I feel there are quite some loop holes in your observation. I can't discuss everything here. However, I would point at 2 most important things that clearly indicates that you don't have HIV, you will not find this information in google search, you need life experience to figure this. I am going to chalk them out for your reference to help you. However, I would want to maintain the sanctity of this forum, I will not participate in a further conversation that should lean towards a debate.

1. HIV positive individuals with suppresed viral load   would most of the time yeild indeterminate western blot test, it is the p24 band that shows up most of the time. P24 is a core / caspid viral protein, in a 4th Gen HIV test if that was absent. You don't have the virus.

2. RNA PCR is a very sensitive test that looks for the viral RNA in your body, testing technology has come a long way, a real time hypersensitive RT RNA PCR can look for a very small amount of viral copy in your blood - as low as 10 copies/ml, if you were infected at the first place. We must also understand that you are only an elite controller if your  viral load is ≤40 copies/ml.

I strongly feel that you should consider a newer perspective, put this whole thing behind you and give life a chance. You have numerous tests and doctor's advice for you to move ahead with life. Give it a good chance.  You don't have HIV and reading incessantly about it will only do more bad than good to you.

We wish you good luck.

[FishingGuy1]

Hi Mike,

I am not looking for a debate either, but I wanted to provide you with factual data.

The  P24 portion of the 4th gen test needs a minimum level of 24th antigen in the blood in order to be positive (aside from the antibody portion of the test). In Elite Controllers with very low viremia, they sometimes won't have enough p24 to test positive because the Viremia is so low.

I terms of the 4th gen test in general, see below for an instance of someone not coming up positive on a 4th gen test see case  #1 in the following study for an elite controller instance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167641/

I do agree that RNA quant PCR tests are very sensitive these days. The one I had 2 weeks ago detects down to 30 copies.

[CurfewX]

You are correct that it may be more prevalent, but it seems to be happening largely in high-density HIV areas.  Also, I haven't seen a credible source stating anywhere near the number you've quoted - a couple of sketchy sites only  However, obviously, all of these people have been identified as HAVING HIV, so it doesn't just fail to show up, ever.  

Elite controllers have bodies that are able to spontaneously control the virus' replication.  If you're having symptoms, that would likely indicate that you are NOT an elite controller.  

Look elsewhere for the cause of your symptoms.  You have absolutely no reason to suspect HIV, given plenty of negative tests, except that you are somehow fixated on HIV being the cause of your issue, despite the fact that it's unlikely you were ever exposed to HIV.

[FishingGuy1]

Hi Curfew,

I know elite controllers are few and far between and I know they generally would test positive on antibody testing or how else would we know they are positive, but see below for those instances of when that reasonsing wasn't correct. I know the chances I was even exposed to HIV is low (but female to male transmission does happen and I have had a few unprotected instances since 2014 which makes it possible. In terms of symptoms,  you are right that generally, an elite controller would not have symptoms because of their ability to control replication of the virus, but technically they are only controlling the virus count, not their CD4 counts or what the virus is doing to their body even from a virus DNA standpoint. There have been some controllers who did have lowered CD4 counts even with undetectable RNA virus which did cause AIDS definining symptoms although it doesn't happen a lot.

see case  #1 in the following study (repatitive negative antibody testing for elite controller)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167641/

see all 4 cases (all antibody testing negative testing and only came up positive based on Western blot testing (albeit weekly reactive or indeterminite results.).. also negative DNA testing in most of these.. I know they are all further back as well (all 2008 or prior) and you will say antibody testing is even better these days... case #1 had lower CD4 counts (although not horrible.. His CD4 counts ranged from 400 to 600 cells/mm3 while never having a detectable viral load.)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3367872/

[FishingGuy1]

In terms of studies on Elite Controller, this guy, Bruce Walker, is the expert, and actually has a lab/non profit foundations in Cambridge for the purpose of studying this phenomenon. They believe elite controllers hold the key to help finding a functional cure

http://www.ragoninstitute.org/portfolio-item/walker-lab

https://harvardmagazine.com/2019/01/hiv-elite-controllers-study

[CurfewX]

I'm not going to engage in lengthy conversation here.  If you wish to focus on the extraordinarily remote possibilities of 1) having been exposed to HIV, and 2) being an elite controller, that is entirely up to you.

[CurfewX]

Only a handful of elite controllers have EVER been identified.  If you think you are going to be one in 70 million, you should buy lottery tickets.

Give up on HIV testing.  The tests don't lie.  Also, a flu shot would not interfere with identification of the HIV retrovirus, or detection of HIV antibodies.

[FishingGuy1]

Hi Curfew,

I appreciate the quick response but I have to disagree with you on 1 part. According to many studies, Elite Controllers are estimated to be in the 1 in 100 to 1 in 200 range based on the total HIV-positive population.  Not more than 1% of the total HIV-positive population, but definitely not 1 in 70 Million... or   even 1 in a million.

In terms of HIV testing, I am not saying the flu shot messed up my prior tests (they were all done prior to the flu shot that I got 2 weeks ago). I was worried about additional HIV testing that may be required including a Western Blot which could come up as falsely semi-positive because of the crossreacting antibodies that are detected.

[AnxiousNoMore]

You misinterpreted. Curfew said the flu shot will not affect future testing, however that is irrelevant since there is no purpose in doing more testing.
There are more causes of whatever symptoms you have than hiv. I hope you are able to resolve your health issues.