POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: needanaccountplease90 on December 25, 2019, 10:18:58 pm
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Been having issues with my gut for 3 years, nothing showed up on any tests. Hair started thinning but standard bloods coundnt find anything. Finally went to test for STIs and showed positive for HIV.
Have an appointment with specialist tomorrow and should have my numbers.
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Welcome to the forum! You will find this community very helpful and open to all issues related to this new direction your life takes. Wishing you the best for your appointment tomorrow. You are not alone! Matt
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Hiya, really sorry to hear about the reactive HIV result.
I can understand it can be quite a shock, although, keep in mind a reactive result is not a diagnosis and we see false reactive results often enough. The screening tests are highly sensitive but not very specific so a reactive result simply means more specific testing is needed to rule out HIV.
Speak to the doctor at the follow-up meeting and have more blood drawn if you have not had already to get confirmation testing done. Until you have those details to share and update us with I am going to ask you to only post in this one thread and have moved it to the "AM I" section.
Kind regards
Jim
Please Note.
As a member of the AM I Infected Forum you are required to only post in this one thread no matter how long between visits or the subject matter. You can find this thread by going to your profile and selecting show own post and it will take you here. It helps us to help you when you keep all your thoughts or questions in one thread and it helps other readers to follow the discussion. Any additional threads will be deleted.
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So I got my results and yes I am positive.
CD4 count 650
V/L >20 copies/mL
But I'm not taking any treatment.
The hiv specialist is probably the most experienced in my large city and said she hasn't come across this yet.
So now I have to undergo all the tests again to confirm.
If anyone is interested I can upload the pathology reports to prove it...
I'm trying to find some journal articles on such a phenomenon
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Hiya,
Sorry to hear about the result.
I am presuming she was not relying on the viral load alone to confirm the diagnosis?
Reactive screening test & a western-blot or differentiation immunoassay?
I've moved your thread, however, for the time being, I am going to ask you to continue to only post in this one thread.
As for the (Viraload), given the initial low or undetectable level retesting is wise given it could be a false result, it's also possible to be an "Elite Controllers" or sometimes called long term non-progress. This is a very small group (< 1%) that can often suppress HIV viral load below testing range without antiretroviral therapy (ART), although, for this group, the treatment recommendations nowadays are still to start treatment for best long term health outcomes.
Best, Jim
http://i-base.info/long-term-non-progressor-ltnp/
https://aidsinfo.nih.gov/understanding-hiv-aids/glossary/3127/elite-controllers
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
Elite Controllers 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.
Elite Controllers 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.
https://stacks.cdc.gov/view/cdc/50872 - HIV testing algorithm
Broken link removed by admin
A person who tests positive for HIV in the blood, despite negative or indeterminate antibody results, is said to have primary HIV infection. However, false positive results are fairly common. A viral load result of less than 5000 copies/ml during primary infection is probably suggestive of a false positive result, because most people have viral loads above 100,000 during this time.
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Yes I've been reading up on the possibility of being an EC
I hope that's the case it would make the best of a bad situation...
https://www.medscape.com/viewarticle/507345
https://academic.oup.com/cid/article/51/2/239/303856
https://www.aidsmap.com/news/jan-2015/elite-controllers-may-pay-high-price-their-low-viral-load
https://www.ohtn.on.ca/rapid-response-considerations-for-the-clinical-management-of-hiv-elite-controllers/
Here are my results
https://m.imgur.com/a/5lOSko7
Any thoughts on them?
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Hiya,
Yeah, my thoughts are they need to rerun the VL test and should if not already be retesting you with a differentiation immunoassay to confirm your HIV status.
If the results are confirmed positive they should be recommending treatment. Until then there is no need to overthink things, try to relax, don't overdo the reading.
Best, Jim
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Welcome aboard, amigo.
Glad and sorry that you got diagnosed, it's always better to know and treat than let it move silently.
Sounds good that you'll meet an experienced specialist, let your doctor be your best friend from now on.
Your results hint at an elite controller profile as your CD4/CD8 ratio is nearly untouched, which is very untypical for untreated HIV. Your CD8 count is remarkably low, again hinting at a preserved/normal immune function. Adding the UD viral load, you seem to be an elite controller as no lab mistake can make all those different parameters come wrong at once. However, having a second immunological panel and viral load test can confirm that to give certainty. You look like a very lucky person, adding the lighter new meds, you should have a life completely unaffected by HIV.
PS: Elite controller or not, treatment is always critical, because even in EC the immune system starts to decline at a certain point. Just felt the responsibility to mention this. Work closely with your doctor.
Best,
ZR
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Thanks for the info, and helping me better understand the numbers. The specialist ordered lots more tests this time and will be checking the a to z of my blood work.. Not sure what tests exactly though I didn't ask.
I know the recent trend is to treat ECs, I will discuss that with the specialist and also try reach out to other ECs and make an informed decision regarding treatment and timing of it.
I guess for now I'm extremely lucky... And have the luxury of time to figure things out...
I'm not someone that's keen on living to 80+ years
If be happy with a life of 65-75.
Do you know if there are any othrt ECs on here that I could reach out to? Doubt they check here much... So might be hard
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I'm not someone that's keen on living to 80+ years
If be happy with a life of 65-75.
I think this is the wrong question, it's more about preventing problems i.e preventable health issues over those years as it does unmeasured and measured damage to you, hence the guidelines with recent evidence are updated to treat all regardless, although, it's always your own choice.
First, get your HIV status confirmed though, all I see at the moment is a reactive screening test and a dogy VL result. Not unheard off and it screams HIV negative or lab error to me at this point with the need for further testing to confirm either way.
Jim
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I think this is the wrong question, it's more about preventing problems i.e preventable health issues over those years as it does unmeasured and measured damage to you, hence the guidelines with recent evidence are updated to treat all regardless, although, it's always your own choice.
Couldn't agree more. The length of lifespan quickly loses meaning when quality is compromised and chronic illnesses often don't lead to a glorious death but a very long and miserable one. When quality is good, people even at 100 are as willing to live as a 20 yo and vice versa, a 20yo would no longer want to live up till his 80s because of compromised life quality. Focus on quality, prevention and preserving yourself in a top form. :)
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Doctor confirmed all test results are the same as last time
Retested multiple times this time by the head of HIV testing in the city and I am an elite controller.
Have been referred to some research groups and they will be doing further tests on my blood and DNA etc which will take months.. So I definitely have HIV antibodies but no viral load...
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Hiya,
Sorry to hear that.
How is the CD4 count looking and did they discuss treatment?
Best, Jim
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Was same around the 650 level.
She didn't discuss treatment she wants me to do another round of blood tests next week and then I'm assuming once those come back she will recommend something.
I'm going overseas for a couple months so won't have much to update until I'm back and she tells me what/if any was found in the further tests.
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I'd let go of the notion of 'elite controller' it's an outdated notion that was optimistic but that data gathered O et the years has shown to hide a whole mess of problems.
It is more accurate to think of slow progressors. There have been studies showing that this group benefit by going ontreatment sooner than later.