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Author Topic: I just got my results back  (Read 5103 times)

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Offline Ben_jammin

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I just got my results back
« on: June 29, 2017, 01:59:30 am »
June 29th 1:43 A.M.

I tested positive for HIV on June 9th. After I was diagnosed, I went to get a confirmation test at the std clinic on June 13th, and earlier this week they confirmed that I was positive. They said that my viral load was 32 and my T cell count was 1130 which was pretty rare. They told me that I am an elite controller and the doctors immediately got me in touch with a research assistant for information on some of the studies they are currently working on.

I was doing research online and read that elite controllers are able to control the virus without any treatment. It's apparently caused by a genetic mutation in my t-cells. When I asked the doctors why this is happening to me they said it might be caused by weird mutation with the receptors on my T cells but they don't know for certain. This is a relatively new frontier they are approaching with hiv. I read online that elite controllers have some issues, but I still need to do some more research on it. I've considered doing the studies with the research assistant. I hope this will help find a cure or a vaccine.

If anyone has any information pertaining to elite controllers, or if any elite controller is reading this please give me some insight. I want to know more about what I can do to help or who I should consult.

Thank you for reading my post.

Offline Jim Allen

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Re: I just got my results back
« Reply #1 on: June 29, 2017, 03:38:19 am »
Hi

You can find some information in this thread: https://forums.poz.com/index.php?topic=51849.msg719533#new

You could also try the poz.com site if you search for "elite controller".
If you do join a study I wish you all the best and hope to hear (if study permits) updates as you go.

Hope that helps.

Jim

Quote
There simply is clear-cut proof that of the significantly greater health benefit to an person living with HIV starting antiretroviral therapy sooner rather than later, treatment should start regardless of viral load or cd4 counts. Hence it's now recommended not to wait anymore and that anyone infected with HIV should begin antiretroviral treatment as soon after diagnosis as possible.

Anyone looking for information on starting treatment can begin by reading this brief and useful lesson: Starting treatment https://www.poz.com/basics/hiv-basics/starting-hiv-treatment

If you are newly diagnosed and reading this note that with treatment Life expectancy for young people taking HIV therapy has reached near normal and so you should expect to live a long and productive life.

Jim

References:
 
http://www.who.int/mediacentre/news/releases/2015/hiv-treat-all-recommendation/en/
Anyone infected with HIV should begin antiretroviral treatment as soon after diagnosis as possible, WHO announced with its "treat-all" recommendation, WHO removes all limitations on eligibility for antiretroviral therapy (ART) among people living with HIV; all populations and age groups are now eligible for treatment.

The expanded use of antiretroviral treatment is supported by recent findings from clinical trials confirming that early use of ART keeps people living with HIV alive, healthier and reduces the risk of transmitting the virus to partners.

http://betablog.org/start-trial-shows-benefits-of-early-treatment-supports-art-for-all/
People who start antiretroviral therapy (ART) immediately after they are diagnosed with HIV, while their CD4 T-cell count is still high, have a lower risk of illness and death

https://www.poz.com/article/START-results-27299-8892
Gold-Standard Evidence Backs Early Treatment of HIV

http://www.medicalnewstoday.com/releases/285972.php?tw
"Delaying ART in patients with HIV reduces likelihood of restoring CD4 counts"

"Elite Controllers Hospitalized More Often Than Those Treated For HIV"   
https://www.poz.com/article/elite-controllers-hospitalizations-26678-5093

ECs 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.

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.

Cockerham LR and Hatano H. Elite control of HIV: is this the right model for a functional cure? Trends in Microbiology, early online publication. doi: http://dx.doi.org/10.1016/j.tim.2014.11.003. 2014.

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

https://www.poz.com/article/life-expectancy-24972-2090 (With treatment)
Life Expectancy for Young People With HIV Is Nearly Normal

Starting HIV treatment soon after diagnosis may reduce the risk of developing HIV-related cancer by 74%
http://www.thebody.com/content/79258/starting-hiv-treatment-early-reduces-hiv-related-c.html

Starting HIV treatment soon after diagnosis may reduce the risk of developing HIV-related cancer by 74%, according to a recent study. However, starting treatment does not seem to lower the risk of developing cancer unrelated to HIV, the study finds. The data remained unclear on whether having an undetectable viral load helped reduce the risk of HIV-related cancers.

Researchers for the study, which was published Clinical Infectious Diseases, looked at data from the landmark START study, which was stopped early in 2015 because it found overwhelming evidence for the benefits of starting HIV treatment immediately versus waiting until CD4 counts drop.

https://www.poz.com/article/modern-progress-hiv-treatment-care-likely-adds-decade-life

the average age of death for a 20-year-old starting ARVs with a CD4 count greater than 350 during 2008 to 2010 was 78 years. This latter estimate is excellent news considering the recent push to get people with HIV on treatment as soon as possible after diagnosis, preferably with a CD4 count higher than 500.

The researchers believe that the continued improvement in survival during the first three years after individuals start ARVs has likely been driven by lower toxicities in modern treatments, improved adherence to treatment regimens, efforts to prevent other health conditions among people with HIV and better management of other health conditions that do arise.
« Last Edit: June 29, 2017, 03:41:55 am by JimDublin »
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Offline Tonny2

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Re: I just got my results back
« Reply #2 on: June 29, 2017, 09:22:03 pm »


         ojo          Hello there...on the "vivir con vih" forum, I just talked to a guy like you, although, he has been living with hiv for ten years and his VL now is 3000 plus, I called my doctor, for advice (he is an scholar from de Cleveland Clinic, specializes in HIV/AIDS and Immunology), he told me, to say to my friend, that he recommends starting treatment, it doesn't matter if he is an "alite controller"...I'm not sure if my friend speaks English, I will ask him, if he does, I will tell him to reply to you so you two can share experiences...best of luck, keep us posted...hugs                       ojo

Offline CaveyUK

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Re: I just got my results back
« Reply #3 on: July 05, 2017, 04:06:03 pm »
My own opinion is that everyone - even elite controllers - should start treatment as soon as possible. As stated above, they can be prone to more health issues than those with controlled HIV.

Also, from a psychological perspective it is good to know you have control. Your own immune system may suppress the virus well, but for how long is unknown, and rather than wait for it to fail and the virus to multiply rapidly, getting on meds means you have a degree of control and can know with reasonable confidence that you will stay undetectable. A small thing perhaps, but I think important.
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Offline FrAcaCDMX

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Re: I just got my results back
« Reply #4 on: July 22, 2017, 01:27:58 am »
Hi my doctor said that even me as an elite controller should start treatment, the risk about it is that the virus could  "wake up" in any moment and the consequences are much catastrophic, I have been taking treatment for almost a month and my life is almost the same instead I have problems with my stomach but I know is the best for me, without wishing to be alarmist or deliver bad or fake news but Unfortunately a friend of mine has just died, he never told me that had hiv but his husband said that he figured out that he had  15 years with hiv without treatment I suspicious that he was elite controller because I saw him healthy and he passed  away in only two weeks, perhaps was only a coincidence but I'm very sad because in my mind remember the doctor's words about not taking treatment in my case, he could've be me

I'm not English speaker, sorry.

Offline Jim Allen

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Re: I just got my results back
« Reply #5 on: July 22, 2017, 03:26:52 am »
Sorry to hear of your friend.

Quote
the risk about it is that the virus could  "wake up" in any moment and the consequences are much catastrophic

The risk is that despite suppressing the virus in blood measurements, it is unchecked and unchallenged doing damage to your health and creating a poor health outcome.

Jim
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