When Did You Start HIV Meds? Stories Spanning Several Decades
April 22, 2013
Ed Perlmutter, Boston; Diagnosed in 2006
Those were stressful days for sure -- severe anxiety, depression and physical illness make for bad company. But the nurses and physicians at the infectious disease clinic treated me with respect and exhibited patience and wisdom every step of the way. We had begun to forge a relationship built on truth and trust. I learned that I would be on the Reyataz (atazanavir), Norvir (ritonavir) and either Truvada (tenofovir/FTC) or Epzicom (abacavir/3TC, Kivexa) arm of the study, and in my infinite wisdom I thought it would be a good idea to start treatment during the week I had planned a September vacation at my friend's house in Wellfleet on Cape Cod; quiet times in a peaceful place, no distractions or responsibilities except taking care of myself by commencing my treatment. The clinical team thought my plan acceptable provided I check in with them on a daily basis. Within six hours of taking my first dose, however, I started to feel ill and by the next morning I had broken out with high fever, tremendous chills and extreme nausea.
Comment by: Jesse
Mon., Mar. 7, 2016 at 6:15 pm EST
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.
Comment by: Dave Martin
Mon., Feb. 29, 2016 at 1:42 pm EST
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.
Comment by: Rachel
Fri., Dec. 11, 2015 at 6:51 pm EST
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.
Comment by: charles c
Sun., Nov. 8, 2015 at 6:48 pm EST
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.
Comment by: yip
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
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.
Comment by: rodrick
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.
Comment by: Matt
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 :)
Comment by: jay
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
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.
Comment by: Ruth
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!!
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
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!
Comment by: Tina
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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