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Getting to Undetectable: People Living With HIV Share Their Stories

April 12, 2013

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HIV Treatment Cascade

An undetectable viral load: the point at which HIV, though still present, cannot be found in a person's blood with the most sensitive tests available. It's a powerful concept with profound implications for the life of a person living with HIV (and his or her partner). However, according to the U.S. HIV care continuum, for a host of complex reasons, 70 percent of people living with HIV in the U.S. have not reached the point of viral suppression. (Among some specific groups in the U.S., that number is even larger.) For many of those that have, reaching that point was a major milestone in their lives. We asked people living with HIV to contribute thoughts and stories about getting their own viral loads to undetectable.

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This article was provided by TheBody.com.
 

Reader Comments:

Comment by: L (Colorado) Sun., Jun. 19, 2016 at 10:44 pm EDT
Being undetectable is awesome! Now to learn to afford once you feel well enough to work you can't afford unless I was extremely wealthy! Viread 1400, Tivicay 1900, Epzicom 1800.00 (approx. prices) and they are all tier 4 or 5 prescriptions according to insurance companies causing a patient to have to pay 30 to 40 percent of the drug cost. Pretty crazy. I am working 40 hours a week at mininuium wage at the end of the month working 40 hour weeks I bring home about 320.00. Isn't that special. I am so disgusted perhaps.
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Comment by: Deon Jones (Panama City Beach, FL) Sat., Jun. 18, 2016 at 10:04 pm EDT
It was something I didn't think I'd see. After days of forgetting to take my medication, or eating and falling asleep instead of taking it after right after. It was a struggle. After about 7 years I finally was. My caseworker had mixed up my record with another of her clients 7 months ago and told me. And I actually believed it but something still didn't feel right. I got new labs done and my doctor told me I wasn't undetectable and one of my mess wasn't working, so he put me on new mess.....then 6 weeks later I got new labs done and well the rest is history. I was undetectable. I have an appointment next month to get more done and every six months I will get them done from now on instead of every 3. I still have a lot to learn about it, but after a heartbreaking relationship . I decided to refrain from all kinds of sexual intercourse until I find the right person. It's been 1 year and almost three months sense I last had any sex and I feel great. Sex can be more stressful than relief if it's with the wrong person. So I remain faithful to God and patiently wait for the next chapter.
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Comment by: James (Nashville) Tue., Jun. 7, 2016 at 1:42 pm EDT
These are all great inspirational stories. Nelson, you are a huge success. There are so few people that have lived as long as you have with HIV. Keep up the good fight and hopefully soon there will be a cure.
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Comment by: Tony Byers (Spartanburg, S.C.) Sun., Jun. 5, 2016 at 7:37 pm EDT
I have been undetectable three months after I started meds and have been ever since. it's been 7 years now and I am thankful for every year of good health. I found out I was positive within the first year of having the disease as well
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Comment by: Randy (Seattle) Sun., Jun. 5, 2016 at 5:22 pm EDT
Making sure I took my meds on a consistent basis is what got me to undetecable
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Comment by: Steven (pasadena, ca) Wed., May. 18, 2016 at 4:52 pm EDT
I think "undetectable" is a misnomer. It doesn't mean one is virus free; only that current tests are not sensitive enough to detect low levels of virus. I'm not saying this is a bad thing. But it's important to remember that just because one is deemed "undetectable", doesn't mean the virus has left their system.
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Comment by: James Fabiano (Miami beach , Fl) Mon., May. 16, 2016 at 3:19 pm EDT
I diagnosed 2 yrs ago with a viral load of 66,000 and T cells 239. I began immediately on HIV meds. I am glad to say I have been undetectable for coming up on 2yrs this August and my T cells are now 889. I am also in recovery coming up on 10 yrs and feel healthier and look it as well at 47 better than at 27 or 37. Take your meds and follow your doctor's orders. This is treatable if you follow instructions....
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Comment by: Aaron (Reno, nv) Thu., Apr. 14, 2016 at 11:34 am EDT
I was diagnosed at the young age of 19. Nearly 11 years ago. When i was younger, the thought of being positive seemed like a dearh sentense. I didnt start ART until 2 years later. When i first got my prescription, i stared at it for hours, just crying thinking to myself, "this pill is what will keep me alive now."

After getting started on it i had a large improvement in my tests. It wasnt until i was 24 or 25 that i realized what such a milestone i had reached too being undetectable. I spoke with my dr and she had told me the reason people still stay sick is because they choose not to take their meds regularly. She commended me for being so faithful to the meds and how it will continue my undetectable levels. Here i am 30 yeats old hand have remained undetectable for almost 8 years. Each time i get my labs back and hear, "You're still undetectable Aaron, good job", its a continuous milestone.
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Comment by: Lisa Britt (Atlanta, GA) Wed., Apr. 13, 2016 at 4:44 am EDT
It's been a little over 4 years since I've started taking my cocktail's.Being undetectable really feels good. I've was diagnosed in 2003 with HIV. The journey has been a life changing experience but for the better. I love myself even more now. One main reason because I've become closer to Jesus more and more. He's my new found Prince of Peace. Learning to network with different people and AIDS organizations has taught me that this is a new beginning of life and not a death sentence. I do understand how people can reject you for having this virus. But it's their loss and my gain to help educate more people, especially our youth in today's society. Speaking up and out to middle and high schools students is the most uplifting educational thing I love to do now. Speaking to the world in the Essence Magazine, The New York Times Newspaper and live on the Rickey Smiley Morning Show, has given me a chance to feel free. Feeling just like my organization, Butterfly Girls, LLC. We transform lives from the inside and out. Understanding that this is what God wants me to do, his will. I will continue to speak about me living a positive life and not feel ashamed or guilty. There is no shame in my game.
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Comment by: Mark Shaffer (Indianapolis, IN) Mon., Apr. 11, 2016 at 6:13 pm EDT
This is all NEWS to me that 70% of the population can't reach undetectable levels. This was never talked about with my medical care team. It was never a concern. I went from 117,000 VL to Undetectable in a matter of 3 months. So I really don't know what to say as far as supporting or comforting those who can't get to Undetectable levels. My Heart is heavy and my soul is sorrowful for any one who is HIV+ because as with any disease or condition I wish none of it upon anyone. Overall, HIV is a part of me but it's not who I am. It doesn't define me. Love, Peace, and Happiness to all.
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Comment by: Jeff (Lynn, MA) Fri., Mar. 11, 2016 at 8:30 pm EST
I found out March 3rd 2013 that I was positive with a viral load of 1000 my doctor said I didn't need medication right away but because I was suffering my a deadly Flu virus that I've never had fully immobilize me I told my doctor to give me the meds anyway and the month after April 1st 2013 I was diagnosed as undetectable with a viral load of 19 and a CD4 of 893 so I was lucky and smart. I know my body and I know some doctors want you to be sick so they can get a paycheck so I took the meds right away and changed my status. Now I'm healthy.
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Comment by: Matthew (Harrisburg, PA) Sat., Mar. 5, 2016 at 11:18 pm EST
I have been infected for 21yrs and I am now undetectable. I have been in this status now for 10yrs. This has become a remarkable achievement fore and those living with HIV. I amazed with the research and the studies done with this desiese. I owe this not only to the medication but also to the amazing Doctors who have worked with me for years to control this.
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Comment by: Mike Bray (San Diego, ca) Sat., Mar. 5, 2016 at 1:38 am EST
I have tested positive for the virus since 1985. I have been through more ups and downs than a roller coaster. I have had my viral load down to undectebal several times. Over the years my viral load has gone up and down but my T-cells remained stable until a little over a year ago when they started to drop.my t-cell count has gone from the mid 400s diwn to my latest count of 97. My viral load is undetectable however. I am doing well, I have had a few health issues and hospitalizations over the last year but I am now going back to work. I am hoping that my t-cell counts will soon rebound
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Comment by: c1no1 (Fort Worth, TX) Sat., Mar. 5, 2016 at 12:11 am EST
I recall posting here once I learned of my HIV positive status in 2010. I wasnt very fond of some of the responses I received so I deleted the post. My pride and misinformation made me very naive about seeking treatment. It wasnt until December 2015 when it was recommended that I be admitted to the hospital as a full blown AIDS patient with a CD4 count of 60 and a VL count of 200k+ that I agreed to start treatment. After about 2 weeks on the new single pill regimen Genvoya my IDC gave me the undetectable status update. It still has not fully registered with me mentally that the virus is suppressed and my CD4 count is upwards of 400, but I feel great. I wanted a CURE, but now realize that I only lost 6 years of living by not starting treatment sooner. Dont be like me. Seek treatment immediately. They have come a long way addressing treatment and I am glad I finally did.
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Comment by: Cindy (NY) Thu., Mar. 3, 2016 at 10:43 pm EST
I was married for 28 years when I was infected by my now ex husband. I was diagnosed almost 9 years ago. It did not take long at all for me to reach undetectable. My tcells were last in the 1700 range. I attribute this to my adherence to the meds. I've never missed a dose. I am determined to survive 9 years ago I thought my career was over, more so my entire life. "How long do I have to live" was in the forefront of my brain as well as a deep desire to crawl under a rock. I was angry. So angry that I became sick from it. All those emotions wrapped up with a big red ribbon. I still battle today with the anger. Finding out that someone knew they had it and did not disclose. 9 years later I'm still here yes the old me died that day at a routine family dr visit, but a new me was born. I continue to do what I love just more passionately. I take nothing for granted. I thank God for giving us great doctors and scientists who have brought us this far in the fight for a cure and medicines to act as a functional cure until that day.
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Comment by: DR Z (Manchester uk) Tue., Dec. 22, 2015 at 5:11 pm EST
I was infected with hiv around 6 years ago by someone who had full blown AIDS who I believe has died now, I would/could not accept having the virus, I turned to drink and drugs and blocked hiv from my mind, and refused to accept I had it, I would not see a doctor and refused to even talk about it with anyone. Eventually I saw a doc and got on meds, Triumeq. I have been on my meds around 6 months and only today 22nd Dec 2015 have I become undetectable. I'm so over joyed I feel like life is worth living again, I still get depressed, I feel alive again, do not take drugs or drink..I just thought I'd add my 2p worth in the hope it helps someone reading this, get on meds asap. I'm lucky I get free meds, I'm male 44 years old, spent 20 years in prisons, so I have been though some unmentionable shti..no matter what life throws at you there is a way out of your situation, stay strong people and stay safe.. Peace and love to all the people who use thebody.com and anyone else who is reading this and feels low/depressed/unhappy..just to read someone's story can boost your mood.
Love & Kisses to all
DR Z
Xxx
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Comment by: Maria (South Africa) Fri., Dec. 18, 2015 at 11:37 pm EST
I was diagnosed in 2013,i started medication in 2014 October.now i'm undetectable.thank you to The Body Team,especially Nelson.you've been my mentor and adviser everytime i ask a question.Thank you so much.
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Comment by: Susan Larkins (Hackensack, New Jersey) Sat., Sep. 12, 2015 at 4:45 pm EDT
HIV+ since 1994....made some life changes...750 t-Cells and undetectable for ten years.
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Comment by: Thomas E.Maciejewski (Milwaukee,Wisc.) Wed., Sep. 2, 2015 at 5:19 pm EDT
As my HUSBAND and I have HIV for over 27 years each and are undectable both of us thaxs to our Clinic a very good Dr. so this is so hard to believe.P/S I'm on Facebook Thaxs again
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Comment by: Ed (Denver) Thu., Aug. 27, 2015 at 11:27 pm EDT
First of all, dont't start your page with a religious leader. There's more reason to fight HIV than religion. I'VE been in this club since '92...before y'all were born. Try again and maybe more of us who show real promise for your futures will be replying. Cheers
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Comment by: Tori Luchsinger (Levittown pa) Mon., Jul. 27, 2015 at 10:07 pm EDT
I was diagnosed in 2010 started meds in2012 when I became pregnant and have been undetectable ever since I have had two children both healthy and negative I'm truly grateful for the medication that I believe is saving my lufe and the lives of so many other people who have suffered from this terrible disease although I struggle with the reality of having HIV I continue to take me medicine every morning
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Comment by: me (Albany, Ga) Mon., Jul. 27, 2015 at 5:38 pm EDT
I don't really understand I have been positive for 10 years in October and wad was on crack at the time I stopped that and I went to an undetectable count I have never been on any meds and go every year to check my blood but it doesn't get worse. I don't want it to I just want to know why I hear all these horror stories and I am the dame as the first day I found out almost. Is there such a thing as just being a host?
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Comment by: Adrian (West Michigan) Fri., Oct. 30, 2015 at 4:39 pm EDT
Your what they refer to as a 'non-progressor'.
Comment by: Marc (North Carolina) Wed., Mar. 9, 2016 at 2:36 pm EST
Thank you "someone" for talking about this. I have been diagnosed for over 6 years (and they think I was + for about 10 - 11 years. My viral load remains at under 100 (from 25 - 100) and my CD4 at no less than 13,000. I have one dr. who still wants me to begin meds.. and one doctor who studies "long term nonprogressors" and see no reason to begin treatment. I have full and complete check ups each year and blood work every 3-4 months.) I am still on NO meds, but always feel "guilty" that I am not. Yet, I am not convinced that taking meds now is going to help me, in fact, may hurt me in the long run. Please, please... write an article about those of us who are in this predicament. It's a lonely space in which to be! (By the way, I am have the B57 gene, which is a marker for suppressing HIV.)


Comment by: life is worth living (United States) Sat., Jun. 13, 2015 at 8:00 pm EDT
Love for others is learning how to be love. Christ accept our burdens. Christ brings peace and helps us to a person who is kind to themselves and to others. That is the cure in my opinion.
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Comment by: Ted benra (San diego) Fri., Feb. 20, 2015 at 11:13 pm EST
God bless the world!
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Comment by: Sheila Borton (Ontario,Canada) Thu., Mar. 20, 2014 at 10:55 am EDT
I was diagnosed in 2005. I have been undetectable for over 6 years now.I've been on treatment for over 9 years also.I was down to 230 on my CD 4 count.And my viral load was 1034.To me that's not very high.Every time I go in to get tested it shows I am undetectable.Ever since I have been taking my medication.It shows that my medication is working on me just fine.I hear if we do miss our medications enough times it can build a resistance and not work.I did have problems at first taking my medication.I kept on forgetting my meds.Until I was told what can happen to me if I keep forgetting my meds.So I never forgot again.I take it every time with my meals.And I feel a lot better now,knowing taking my medication is very important to me in my everyday life.
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Comment by: Robert (Missouri) Thu., Mar. 6, 2014 at 4:13 pm EST
HURRAY and HALALLUA ,is what I've got to say,have been POS for twenty years,and though it has been the test of a lifetime to survive the countless challenges and barriers,and all the life's endless learning to survive (with the help of every concievible friend , physician, social workers and the number of programs) ,this NEWS relieve's so much fear and guilt that maybe just maybe,we weren't careful enough with a sex partner is indeed HUGE news for myself and countless others.
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Comment by: ben (uganda) Sun., Oct. 27, 2013 at 7:29 am EDT
I thank God, have had undetectable viral load for now a year,please advice, i really want to get married to lady of same status.. what should i do i dont want to keep advertising my self... Preferably am looking at alady not from uganda
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Comment by: Chas (southern calif) Fri., Aug. 30, 2013 at 12:57 pm EDT
I was diagnosed in 2010 and have been undetectable since 2011. My T Cells are at 1,000. I am married and my wife is not infected with HIV. I also continue to exercise 3 to 5 days a week. I cycle anywhere from 20-100 miles at a time and do high intensity weight training with a cardio component mixed in. I am 60 years old. I eat healthy most of the time and I take Atripla and Juice-Plus. Juice Plus is 17 fruits and vegetables. Dr. Dubois an Infectious disease specialist has all of his patients on this product as well as their HIV medicine. I am as overall fit today as I was when I was in my twenties. I am 5' 9" 175 lbs with a 32 waist. I am only 5 lbs difference from my high school weight. I say this to encourage you to eat well and begin an exercise program that you can do safely yet progresses as you improve.
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Comment by: Evan (Los Angeles) Tue., Jul. 16, 2013 at 10:08 pm EDT
Started meds right after getting C Diff from antibiotics which appeared to only be partially treated. Experience terrible GI tract issues for 8 months after and even though I never missed my med my virl load continued to remain around 200.
At this point I finally got the GI issues resolved but my testosterone was also went down so I started very dose replacement therapy and returned to the gym. One year of hard training later and 20 months after I started meds my testosterone was normal and I was finally undetectable. I believe the GI issues messed with my immune system so severely that the meds were unable to drive down the virus properly and my testosterone in turn also suffered. That said, when I started meds my t-cells went as low as 350 and my percentage was 15 today, now nearly 3 years after starting meds no have I remained undetectable, my t-cells are around 490 but my percentage is 41 (the highest is has been since being dagnosed). I highly recommend weight training though I imagine any good physical regiment would greatly benefit your long term health!
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Comment by: Bradley (Bellingham, WA) Mon., Jun. 17, 2013 at 1:43 am EDT
I just really want to thank Nelson for pointing out to me that I'm one of the lucky few on the planet that these life saving drugs are available to. You know, it's way too easy to start feeling sorry for oneself living with HIV and all that comes with that diagnosis. Until you realize that there are millions and millions of people who would love to have my struggles instead of what they're going through. Everybody alive today is trying to overcome something in life. After watching Nelson's 5 minute video, I'm adding self pitty to my list of things to put behind me. Thanks for the wake-up call Nelson, you da man!
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Comment by: Hank (Philadelphia) Wed., Jun. 5, 2013 at 12:20 pm EDT
So I just wanted to throw out there that while reaching undetectable was a happy day in my life, it happened relatively quickly. The day that I still sit in awe about happened just a few weeks ago. I started meds with a cd4 count of 224, now its 746. For the first time in my ten years of having HIV my cd4 count is above where is was when I was diagnosed. No virus, plenty of cd4's to go around. Thank you to the staff of the Mazzoni Center in Philadelphia for keeping so many of us going!
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Comment by: Charles (New Jersey) Wed., Jun. 5, 2013 at 10:40 am EDT
I was sitting at mt desk at work when my doctor's nurse called me with my test results and said that I was doing wonderfully on the medication. When I didn't hear the word "undetectable" I was concerned but when I asked for my VL number she said it was very low, so low in fact that it really didn't matter...So I flat out asked was I undetectable and she confirmed that I was....yeah!!!! I asked for the results to be faxed to me and when I actually read the results I was excited. An undetectable result is only as good as the HIV test being used. My next set of labs showed a VL of 26 which meant I was no longer undetectable but in context 26 could have been lower than the actual VL on my previous test. Staying close to your numbers is the best way to monitor your health....
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Comment by: Matt (Tampa, FL) Tue., May. 21, 2013 at 10:34 am EDT
I have been un-detectable for 5 years now I have been on Atripla all this time and have not missed a single dose. Proof that as long as you stay on your meds and don't miss any doses hopefully you can also get to this level and stay at it.
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Comment by: Sad (Jhb, SA) Wed., May. 15, 2013 at 2:52 am EDT
My son was diagnosed HIV positive in 2012. He went on treatment and now has an undetectable viral load. However... he is lonely and is avoiding any relationship with anybody. He thinks he will never be able to find someone to love him because of his status. He is such an attractive young man but his heart aches for a partner that will accept him with his status.
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Comment by: Natalie Trudeaux (Kentucky) Mon., May. 13, 2013 at 8:13 pm EDT
I suffer from aids depression and it affects my daily living habits.how do i know if my aids meds are still effectve? can someone tell me what kind of blood test i need to know, my atripla is making me deathly sick and i need a change in cocktail.
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Comment by: Bradley (Bellingham, WA) Mon., Jun. 17, 2013 at 1:15 am EDT
Hey Nat, I too was depressed and found out that the advanced state of my HIV disease had robbed me of my testosterone. Now I take hormone replacement therapy and I feel like a new man, I'm engaged in life again, I have enough energy to get things done and have an all around sense of well being. Before you switch off the Atripla (I take that too) be sure you ask your doctor to test your blood for sufficient hormone levels, if you haven't already. That could be a possible solution to feeling better without having to start down the road of anti-depressant meds. Best Wishes, I hope you get feeling better soon!


Comment by: Peter (San Francisco, CA) Sun., May. 12, 2013 at 9:54 pm EDT
I was undetectable for years. Then, I had to stop meds due to an allergic reaction. My doctor, who has since left the field, would not put me back on meds until lab tests were completed. Well, 5 months later, my viral load was 6 MILLION! The doctor was gone and a new doctor had to pick up where the other doctor left. I've been back on meds since January of 2013. My viral load is back to undetectable, even with the new more sensitive test. So, want to live? Stay on your meds. Nuff said?
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Comment by: Doug Collins (New York, NY) Thu., May. 9, 2013 at 5:12 pm EDT
I was quick. 60 days on epsicom and reyataz and I was below 20.
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Comment by: Shirley Hilda (Leesburg, FL) Wed., May. 8, 2013 at 2:26 pm EDT
I was diagnosed HIV+ 2007 and am 57 years old. I take Atripla and have been lucky not to have to change it. Became undetectable 3-4 months after diagnose. Now i'm experiencing toenail fungus - and finally found out that it may be HIV related. My 1st time here using a public forum to talk about myself. Such a lonely time for me-and I don't know what to do, where to turn to for support. Maybe this will be a start.
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Comment by: Bradley (Bellingham, WA) Mon., Jun. 17, 2013 at 1:25 am EDT
Hi Shirley, I was diagnosed with late stage AIDS in 2008 at age 45. I was so, so sick and had many opportunistic infections, including nail fungus. My doctor was going to prescribe me an oral medication to fight the fungus but I read that anti-fungal meds. can react with Atripla so I use topical treatments for it. If you are consistent with it, you can do wonders for making nail fungus go away and there are several products out there that you can buy over the counter without a prescription. Talk to your pharmacist to find one that will work for you. Good Luck!


Comment by: subash (india) Tue., Apr. 30, 2013 at 12:08 pm EDT
2009 my cd4 is 800 now it is 640, whether I have to start meds, but my Dr suggesting to wait for few months, is it correct. I using Novastat 1 pill everyday, is there any risk.
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Comment by: quintus murray (new york,NY) Tue., Jun. 11, 2013 at 10:16 am EDT
START MEDS NOW!!! Recent studies now say otherwise and suggest starting treatment immediately after diagnosis. Look at french cohort and other articles just say you want treatment now.


Comment by: JAIME LOUISE DOUCETTE (1110COMOX STREET VANCOUVER B.C. APT.405) Sun., Apr. 28, 2013 at 12:53 pm EDT
HELLO I AM A 34 YEAR OLD FEMALE WHO HAS BEEN STRUGLING WITH CRYSTAL METH ADDICTION FOR YAERS NOW TODAY I AM 16 DAY'S CLEAN AND I AM STILL UNDECECTIBLE ILOVE LIFE NOW.I HAVE BEEN H.I.V. POSITIVE SINCE I WAS 16 YEARS OLD.
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Comment by: Bradley (Bellingham,WA) Mon., Jun. 17, 2013 at 1:35 am EDT
Hey Jaime, I struggled with Meth myself and it no doubt contributed to me becoming infected with HIV as I was very promiscuous while I was using. I support you in your effort to stay clean and can tell you it only gets better. I've been clean for about 6 yrs. now and discovered that as time went on in my recovery, bits and pieces of myself I didn't even know I had lost were coming back bit by bit. You'll feel like yourself in no time, just do WHATEVER you have to do to not use again! I had to go to Alaska for awhile to get away from the scene in Portland, OR where I am originally from. Sometimes you've gotta just do it for you and nobody but you. Yes, some people may not understand or they may feel hurt but continuing to party with a positive HIV status is pure madness. You need to ask yourself, "do I want to live or do I want to die?" I hope you will choose life, it get's better. Trust me, I've been where you are and if I can do it, you can too! Praying for you here in Washington, be well!


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