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When Did You Start HIV Meds? Stories Spanning Several Decades

April 22, 2013


When Did You Start HIV Meds? Stories Spanning Several Decades

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 usually comes with fewer side effects, fewer pills and the assurance that, if all else goes well, those meds will be a person's companion for a long, full life.

One thing is certain: Whether you took your first fistful of pills in the late 1980s or began last week with a single-pill regimen, 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: Daniel b (Dallas TX ) Sat., Jul. 23, 2016 at 7:34 pm UTC
HIV sucks was diagnosed in 2001 and then in 2013 was diagnosed with AIDS have been undetectable since starting medication it's my way of insuring I stay alive yay
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Comment by: koren (Washington D.C.) Sat., Jul. 23, 2016 at 2:40 am UTC
HIV killed almost my entire generation. So many friends, so many loved ones, and so many acquaintances in the 1980s and 90s. I'd say at least 95% of those I knew were Gay back then who were positive, aren't living. During the worse times, there were funerals every week, memorials every Saturday night.

But then there were the lucky ones, the ones who never developed the opportunistic infections, and there were those like me, who were never infected. We learned all about safer sex, and made it our new religion; we practiced it all the time for we knew our lives depended upon it. Even when in a committed relationship, you played safe, for it wasn't just HIV out there, there's an epidemic of Hepatitis C. And if you and your long term partner couldn't infect each other, if you played outside the relationship, alone or together, safer sex was mandatory. This is why I don't understand the younger generations being so nonchalant about safe sex. All it takes is once, and you risk your life, or risk a life chained to medication. I just don't understand it, but then you didn't see tens of thousands die, no you didn't see that did you?. My friends who are still alive after years since their original diagnosis in the 1980s, well there aren't many of them left now, in fact there's only about a handful. For the ones who passed, I still remember some of them, their smiling faces, their joy at being alive; they will live in my heart until I take my last breath. Just do me two favors - 1) practice safer sex, or take those prevention meds, and 2) pray for all those who have been infected - all those who have left us, and those struggling today with medications. God Bless you all.
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Comment by: Jesse (Germantown, MD) Mon., Mar. 7, 2016 at 6:15 pm UTC
Diagnosed 2/14/1994 and began 1000mg of AZT each day. Wife diagnosed 2-weeks later. 22-years later, the medical community in Montgomery County, MD still have prejudices and assumptions even though we've never had drug/alcohol problems/same sex relations. If we have a problem it's all "it's your disease/medicines". They'd rather have us addicted to opioids for pain management instead of medical marijuana. Being an AIDS patient in this county is a death sentence.
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Comment by: Dave Martin (Austin, TX) Mon., Feb. 29, 2016 at 1:42 pm UTC
I was infected September 1986. Tested in March í87. I got the results days after AZT was approved. Didnít start meds until fall of 2003. Docs tried to put me on one med I had already objected to (Combovir), and one they knew I my virus was resistant to (Sustiva/non-nukes). I filled the scripts, but stopped taking them.

Moved to Ausin in March 2004 with 38 t-cells. My new doctor listened, and we worked together to find a regimen I could agree to: Reyataz, Emtriva, Viread, and Norvir. Of course the Emtriva and Viread were later replaced with Truvada. After years of taking that combination, the diarrhea became too much. After researching online, I decided to drop the Norvir. It worked.

My doctor wasnít sure I was right, thought it might be lactose intolerance or gluten allergy. So, I tested it. With no Norvir, I drank a lot of whole milk, and at multi-grain breads. No diarrhea. My doctor was impressed with my dedication to prove my case.

Since Reyataz normally needs to be boosted, we agreed to up the dosage of Reyataz and replace the Truvada (and Norvir) with Epzicom. The tests showed that Epzicom would not be an issue.

Iíve been on that ever since. Itís brought my t-cell count above 600 (last labs were 650), and of course undetectable.

September 2016 marks thirty years living with HIV. Iíve never had an opportunistic infection, donít get flu vaccines (and donít get the flu, either).

Some people believe itís because I didnít go on meds for so long is why Iím still here, but the early cases didnít have meds to refuse to take. I wish I knew why Iíve never been sick, though not complaining. Just wonder if thereís something in my genes that might help others.
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Comment by: Rachel (Vancouver, Wa) Fri., Dec. 11, 2015 at 6:51 pm UTC
I started AZT in 1987 when it became available. I took two pills every four hours around the clock back then. We've come a long way medicinally since then. I only take two pills at night now.
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Comment by: charles c (sacramento ca) Sun., Nov. 8, 2015 at 6:48 pm UTC
tested + in 1989.began meds in 1991 as my Dr. said
"EITHER OR". I was 74 yesterday and thanks to the
good counsel of my Dr. I have enjoyed (?)a mostly
stress free life. However, I am now faced with the
accumulation of side effects coupled with the many
age-related health issues.
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Comment by: Anonymous Thu., Jul. 17, 2014 at 1:35 pm UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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 UTC
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: EJ (New Jersey) Thu., Aug. 4, 2016 at 3:45 pm UTC
I have been on Atripla for 10 years, 1 pill every single day at bedtime, and I thank God that it has been working very well with minimal side effects (once in a while vivid dreams). Within a year my T-cell count went to normal and currently is in the 600's and the virus undetectable for years now. Thank you Atripla. You are a lifesaver.

Comment by: Tina (Charlotte ) Thu., May. 23, 2013 at 4:08 am UTC
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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