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When Did You Start HIV Meds? Stories Spanning Several Decades

April 22, 2013


HIV Treatment Cascade

In the current era of HIV treatment that's both effective and tolerable, people's stories of starting HIV meds have changed considerably. HIV treatment may come with fewer side effects and the assurance that, if all else goes well, those meds will be a person's companion for a long, full life. But the treatment cascade reminds us that, in the United States, only a third of people living with HIV have been prescribed HIV meds.

One thing is certain: Whether you took your first fistful of pills in the late 1980s or began last week with one of several single-pill regimens, starting HIV meds is a life-changing event. Many of our bloggers and community members have told their stories of starting treatment; here's what some of them had to say about it.

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Reader Comments:

Comment by: Anonymous Thu., Jul. 17, 2014 at 1:35 pm EDT
They purposely try to make it a mixed crowd to give the false impression that all demographics suffer equally.


Why miseducate people about the reality of HIV/AIDS by pretending it's a rainbow of us all?
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Comment by: yip (collierville, tn) Sat., Nov. 22, 2014 at 8:50 am EST
Glad to see some truth posted. The statistics on HIV/AIDS tend to follow certain demographics, and everyone will bash this, or maybe it will be taken down, but LIFE CHOICES. Drug use, sexuality...sorry, the truth does hurt. If you travel in the those circles, you are MUCH more likely to contract

Comment by: David Hancock (Dallas, TX) Wed., May. 28, 2014 at 9:11 am EDT
I was in pretty bad shape when I went for diagnosis (as if I didn't know) and treatment in 1996. I seem to recall a t-count of 6 and I has KS. I had been totally ignorant of the new family of drugs used to treat HIV/AIDS and was pretty certain of a bleak outcome. My first course of treatment was the rigorous 3 times a day Crixovan & anti-virals, for which I'd been warned could cause many debilitating side effects. That did not prove to be true for me, fortunately, and my positive response was immediate. The KS cleared in a matter of a few months and my counts in the positive were within a few months. In time I was put on the 1 a day Atripla, which has been quite effective. My health had been excellent since that time and I have maintained a very high T-count (over 900) for quite some years now, not sure of the exact date. Just to give credit where credit is due I have an excellent primary infectious disease physician, Dr. Brady Allen, in Dallas and the wonderful team of specialists and staff at Uptown Physicians Group here in Dallas.
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Comment by: terry corbin (vallejo, CA) Mon., May. 12, 2014 at 7:40 pm EDT
I've had HIV sence 1978, The drugs at frist were bad, made you sick, but now their great, they work for me.
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Comment by: rodrick (Brooklyn ) Thu., May. 1, 2014 at 11:45 pm EDT
I'm a long term survivor and was diagnosed in 1989 and trust me I didn't think I live no more than two years. Most of my friends where dying or already dead. I have to say I was very proactive learning all I could about GRID as it was called back then. Today, it's almost 25 years years and I thank God and the medical staff for all their support and help. I was able to find med's that worked for me and no longer do I worry about taking med's because my cocktail medication went from 23 pills to 4 pills. i had been sick a few times but overall I doing very well. In fact I was able to return to school and get my Master's degree in social work.
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Comment by: Matt (Corning, NY) Thu., Apr. 3, 2014 at 4:10 pm EDT
The date was 8/02/2011, I had just recently turned 21 and it was closing in on my yearly HIV testing. Given that I was in a committed relationship I was not to worried about having my test done.. however about 30 mins later I received the news of being HIV+. The news was devastating to me, especially finding out my partner at the time had been cheating on me and gave it to me, and to be honest.. I went off the deep end with alcohol and drugs.. being so young I thought for sure I was just going to die and if I didnt, I would be alone forever. About a year later of destroying my body I decided enough is enough and went to a clinic. To our surprise my CD4 could was 376 and Viral Load was 82,000. I was not immediately started on meds as my levels were not to bad but eventually I insisted to start them before it were to get worse. I was started on Atripla. At first my body was not happy about it.. AT ALL! I dropped almost 70lbs, couldn't eat, had horrible dreams and was always sick but I stuck with it and after a few weeks the only remaining side affect was some weird dreams now and then. Now, almost 4 years later. My CD4 is 780 and viral load is 26 (undetectable). I have learned so much from this life changing virus. It is not a death sentence, I will live a long and happy life, and I can say I am happily in a actual comitted relationship with a HIV- partner, so having a positive status will not prevent you from falling in love. Just be sure to take your meds and stay healthy. There is nothing at this time that any of us can do to get rid of the virus, so no point in dwelling on it and letting it control your life.. you are in control of your future! Enjoy it! I'm now 24 and absolutely loving life again! :) I hope my story can help others in making the decision to get tested (even if in a relationship) and for the ones who are positive to just stay healthy :)
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Comment by: jay (England) Wed., Jan. 21, 2015 at 12:11 am EST
What a nice story in the end, bloody well done and I wish you all the luck in the world mate

Comment by: Kc (Orlando fl) Mon., Feb. 24, 2014 at 6:30 pm EST
Going on 35 pluse years here, I have worked in the HIV feald for some years. There have been A lot up and downs. I deal with them as they come , you do what you need to do and keep on going. I have taken about every pill there is to take. I'm done trying to be negative here, i've had some great doctors in the field , and all I can do is take each day as a new one. I'm. May I will get married to someone who's been together 18 year, if he wasn't here I don't think I would be here. Has the grace of God I was given a gift. So when you think it can't get better it dose and it will.
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Comment by: Ruth (Detroit, Michigan) Sun., Nov. 17, 2013 at 1:17 pm EST
It's nice to see that everybody looks healthy. My girlfriend died in the early 1990's. I miss her. I often wonder if she took medication seeing that she actually died before her husband who gave it too her. It would be so nice to hug her today as a survivor. You guys look great. I am happy your quality of life improved after being diagnosed. Keep your head up!!
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Comment by: Well Thu., Jul. 25, 2013 at 4:50 pm EDT
I noticed all people with HIV have changed appearance.
But not Efrain Carrasquillo! How can he look like that?
No sines of lipoatrophy on his face.
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Comment by: anton baldives (san francisco, CA) Tue., Jun. 18, 2013 at 11:39 pm EDT
how long can antiretroviral meds prolong life? someone told me its average 10 years. i need an aswer please.
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Comment by: Troy (Capitol Heights MD) Sat., Feb. 22, 2014 at 1:25 pm EST
As long as your taking the medicine you can live a full life span or as long as person without HIV.

Comment by: Texas Star (Austin, TX) Thu., May. 23, 2013 at 4:52 pm EDT
My first dose was October 12, 2011. Atripla, one pill, but taking that step was just a culmination of the "baby" steps that had occurred prior to that date. I was in NYC for work in early Aug, 2011. I woke up in my hotel, felt "funny," but still got up and started my day. I walked only 2 NYC blocks and thought I was going to die. As I was out of town, I went to a "doc in the box" where I was examined, and a chest xray taken. You have "walking pnemonia" the doctor said. Take this antibiotic (Levaquin) & you'll feel better in a few days. I went back to the hotel, unable to eat, short of breath & drenching my sheets with sweat every 3-4 hours. I knew I was in trouble, but instead of going to the ER, I arranged for an earlier flight home. I don't know how I made it all the way from NYC to Austin, but I did - honestly I don't remember the airport, flights, etc, but I made it home. I was convinced that if I just made it back to the security of my home, my bedroom, that all would be well. Isn't that what the doctor told me in NYC? I had taken my Levaquin faithfully everyday, why wasn't I getting better? I returned on a Friday and on Tue my sister came and dragged me out of bed and made me go to the doctor. I barely was able to walk in the doctor's office - I was blue. My oxygen concentration was 44%. I was rushed to the hospital and I don't recall much after that. However there is 1 thing that will forever stick in my mind - "you are HIV +, you have PCP & you have AIDS." That is when my journey began - my journey with this virus and all that comes with it. An emotional and physical rollercoaster. I am proud to say that 19 months after starting Atripla, I am thriving(knock on wood as my grandma used to say). Everyday's an adventure - I am working FT, traveling again for work, have gained a few lbs, but most importantly taking that 1 not so little pill everyday. The first dose was an important milestone, but everyday now is treasured. Thank you Atripla!
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Comment by: Tina (Charlotte ) Thu., May. 23, 2013 at 4:08 am EDT
I were out on the street for many year I find out that I we're HIV so I try to kill myself with the drugs day, week,month past went god said no more my child so I got myself to a therapy center out of town for 14day and can back home to find myself in hafeway house for people with HIV I stain where for 2 years find me a kid for a year and we're feeling good about and going to meet yes I am a recovery addict I be clear cent 1_16_2000 I just want to put my story out there Because I am a miracle.
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