Comment by: Annie
Thu., Mar. 6, 2014 at 8:35 pm EST
I am on pain meds I take 80 mg of oxycotin in am & 80mg in pm in between for breakthrough pain I take 30 mg roxycodone 3x's a day when needed. I also realize when I take my pain meds I doze , I ll awaken sometimes to take my HIV meds truvada, rayataz, & norvir I doze off again or when I doze I don't awaken till next morning & I forget to take them . I just need pray I haven't done anything that will harm me in the future .but it's the dozing off that's where I neglect my pills but if I remember as I take my pain meds I then take the HIV meds too together !!!
Comment by: Aj
Mon., Feb. 24, 2014 at 4:44 am EST
I tend not to skip my meds, but I do only take 1/2 of what is prescribe (every other day) and I do take breaks. My immunologist disagrees with this practice, but as my friend (he is both),he agrees with my decision and has said many times "It's probably why you are still alive after 23 years infected". This is how I've always seen it: I took care of too many of my friends that died from toxic HIV med over doses in the 90's. Not from complications of the virus, but from having their bodies pumped full of toxic chemicals. Don't let them kid you...its all experimental. Very few health professionals will even address the subject, nor will you ever see class action suits like you see with so many other drugs on the market these days that are riddled with serious side-effects.
But here's the twist. I have never reinfected myself. I eliminated alcohol, tobacco, any other drugs (natural or chemical, prescribed or not), fast food, processed sugars, caffeine, and anything with food coloring. I eat only fruit or juice before noon, proteins (with fruits and veggies) for lunch and starches (with veggies) for dinner. No mixing of fats, starches and proteins! I exercise at least 1 hour a day, longer if I don't feel good. And I sleep a minimum of 9 hours a night. I look and feel better at 48 than I did at 30. When I contacted Crypto and was told I was going to die...I kicked it. I contracted Necrotizing fasciitis and was told I was going to die...I kicked it. I get the flu every year...I kick it.
I would never be so presumptuous to recommend any of the above to anyone else, but I will say this: Take control of your health. Make your own decisions...western medicine follows one narrow path. Make no distinction between mind, body and soul...its all you baby, so treat
yourself with respect. Use stress to your advantage. And always remember HIV is not your nemesis, it is not evil, it doesn't have an agenda, it is not a living being...you are in control.
Comment by: Victoria Narcisi
Wed., Feb. 19, 2014 at 12:52 pm EST
I am so sorry, my comment was made in haste. I had no idea there were issue till this day. The Gay community needs to continue to fight for their rights and we all need to be aware of the problems so that we can all help. Please, do not give up!! take your meds and document your outcome, and keep strong!!! and connected use those condoms and be in long committed relationships. Do not give up, make this country find cures!! the researchers are getting mega bucks to be in business. They have to start finding cures!! for all kinds of things. I have COPD and they still have crappy meds.
Comment by: alex m
Fri., Jan. 24, 2014 at 1:15 am EST
what happens when society says your income does not qualify you for assistance in the cost of your hiv meds (atripla in my case), but yet you find yourself with crazy medical bills, and as time goes by the meds your were provided with by insurance is no longer covered as it once was when you started your treatment.
then you look to the programs that once helped you to find out that in order for you to get help, you will have to become uninsured, and find yourself without the job that once up on a time was enough to give you a decent comfortable life. is society actually driving you to loose any hope?
Comment by: Angel
Mon., Jan. 13, 2014 at 1:49 am EST
My fiancé is HIV positive, I am negative. He constantly forgets. How can you forget 3to 5 days in a row. I think I take it more seriously than he does. It makes me so angry that he takes this situation for granted. I wonder what I can do to make him realize how very important this is.
Comment by: Louis
Mon., Dec. 23, 2013 at 11:22 am EST
How about, for most of them, they skip their meds because they live in denial, which is why they engaged in the high risk behavior to begin with?
Comment by: Jake
Sat., Dec. 21, 2013 at 3:05 am EST
My comment isn't actually about me but one of my friends.. Earlier this year he lost his job and with the went his meds.. I was wondering if anyone knew where he could go to get free meds.
Comment by: linda
Thu., Nov. 21, 2013 at 12:16 pm EST
I read a lot on hiv meds,options,cost,adap,etc...you want to know what is really sad ? and I have no problem helping other people but when I read other countries get their meds free yet the American has to depend on organization...and being put on a LIST....whats up with that ? not only is that not fair its not right.then I read an articil on how much hiv meds cost to make...MADE ME SICK....1 viread costs less then 2.00 to make but when you go to the drug store a bottle of 30 costs almost 1000.00....WHAT IS WRONG WITH THIS PICTURE ! ?
Comment by: Tony
(Los Angeles, CA)
Fri., Nov. 8, 2013 at 5:09 am EST
I don't know who this person IS but she is sadly misinformed. ALL of the people I know TAKE their meds 'regularly'. I myself in over TEN years have never missed a dose ! Her conclusions are childish and her suppositions unsubstantiated ! If this were the case ALL of these people would be dead as doing what she suggests makes you 'susceptible' to the disease. I don't believe a word of what she says !
Comment by: joel julian diaz
Thu., Nov. 7, 2013 at 7:08 pm EST
the frustration that i get from so called family members, not wanting to talk about the way i feel, it is me fault that i'm hiv+, me mum had died & was so upset, also wanting to die, i know it's selfish of me, had sex knowing that person was positive, thought i'd be dead in perhaps four month top, but i'm still here fifteen years later
Comment by: david king
Thu., Nov. 7, 2013 at 2:33 pm EST
my hiv meds were stolen due to me being homeless and having no where to store them so they wont be stolen.Will my state or the government of my state or nation , pay for a free THIRTY DAY SUPPLY?
Comment by: Tony Blint
Wed., Oct. 30, 2013 at 9:23 pm EDT
I am 64 yrs. old, have had H.I.V. since '87 and A.ID.S. last 10 yrs. and my Hope and Faith seems to be less now. My Neuropathy is terrible pain is never ending and worse to where my pain meds. don't help anymore. I have so many health issues now,my so called life seems like a living hell. I wish at times that all this would end, and that God takes me. I'm a fighter yet my will to live fails to keep going. What is God's plan as to why Im still just barely hanging on. I'm an Artist, that has faded,some days I act as though I'm fine yet it is an act,and this part I wish no more to play.I need someone or something to ease my pain, what do I do? This is not "Living" I scream and cry at times it's to much to bear. I live alone. So I close with for those of you who have this stay strong keep your Faith, Hope, and Belief alive no matter what. I do my best to nuture those yet it's more difficult, but all of you it's not your life only a part of it. Be Well and God Bless, I welcome all comments, I have yrs. of exp. in this, perhaps God wants me to inspire or teach others, Some friends say I am their Inspiration and they wonder how I do it. I just do my best is all I say, and keep strong.
My Blessings to All of You.Now my hearing seems to be affected now and my body weakens and Neuropathy is horrific. So once again be Strong.
Once again keep Faith alive. Tony
Comment by: Jachmd
Sat., Nov. 16, 2013 at 9:23 pm EST Lithium may help neuropathic pain
Comment by: vihhy
Sat., Oct. 19, 2013 at 11:26 am EDT
Can someone please mention what hiv they took? Rapid? I had itchy blotchy rash on shin two weeks with woman. Then ever since lost.weight achy everyday. Dark circles under eyes sunken.and noisy tummy. Please someone answer.
Comment by: Phoenix rising
Tue., Oct. 15, 2013 at 1:46 am EDT
I went undiagnosed for way to long and when I finally got tested on a whim my cd4 count was 25. We have managed to get this up to the 200's but not over 300. When my partner who brought this in to he relationship left, I was a hot mess. I drank , took ecstasy, cocaine and tried to self destruct. At the time all I had was fitness, I was drunk every weekend trying to find someone- I was honest with them all. My point it..8 years later I sit here thinking about the good in my life. I have a negative partner of 5 years! Our doctor got his insurance to approve truvada to prevent infection and it works. I will say however, I continue to love him and respect him too much to be completely unsafe. I don't want him to live with this invisible affliction. There is hope for love and acceptance. I am living the best life ever because there is no drugs and bing drinking or waiting up in a strangers house. Decide what u want and it will come. Take your pills, not all doctors are out to over drug us. Mine cares and gives me a hug every visit and the asks where can get some of my fiancé ! Lol. I'm said reading the loss of hope so many are sharing and want to offer my story of redemption and hope...and love I. Pos and neg relationship...HIV and aids are not the topic of discussion dily...our live sour work, our friends are...don't forget to live!!!
Comment by: Kate
Thu., Oct. 3, 2013 at 1:47 am EDT
I get soo depressed that i don't want to take my meds. there is hardly any health care here. i don't get to have housing or food stamps bc of a fenoly i commit in my youth. what am i to do? i just want to die most times. but i have no reason. i have a beautiful daughter. she keeps me alive. i love her. but not myself.
Comment by: susan
Wed., Oct. 23, 2013 at 8:29 am EDT I'm sorry you feel the way you do. You have to take care of yourself so you will be around to take care of your child. You can live a normal healthy life and be happy but you have to want that for yourself. I love you and don't even know you. Your story tugs at my heart because I know there is hope for you.
Comment by: charles
Sat., Sep. 28, 2013 at 12:19 am EDT
please people why are we having a big debate about this hiv (immune deficiency syndrome) is real and is proven to be a curable and no longer a issue in the world in the next 30min-years but difficult task but if gone to long with out treatment is PROVEN to turn into what they so call aids (accuired immune deficiency syndrome) as a result it will effect the immune system as we all know and also which is basically still hiv just NUMEROUS affected cells to the point "STICKY GUM ROLLED IN SAND" so point is yes this is a real sicknes,virus just as you get a cold so don't be discouraged when people say there is no cure we are already in this together people fighting for those free days...
Comment by: Tony
(Los Angeles, CA)
Fri., Nov. 8, 2013 at 5:15 am EST I'm not sure what drug you are on BUT, HIV and AIDS are NOT nor have they ever been 'curable'. There are meds now that will make it livable BUT it is no cure.
Comment by: TOM
Thu., Sep. 19, 2013 at 2:34 pm EDT
I FEEL FOR EVERYONE DEALING WITH THIS DISEASE! I was excited to hear that a vaccine was discovered at Oregon State which wiped out the virus in monkeys. Apparently the monkey strain is 100 times more potent than the human strain. The viral load in the monkeys was undetectable after receiving the vaccine three years ago. They are about to start testing the vaccine on humans.
Comment by: Scarlett
Sat., Sep. 14, 2013 at 12:18 pm EDT
I been pov for over 5 years now. I been having problems assepting the fact i have to take pills everyday its suck. I have my son that i also take care of n make shore i give him his meds. Its been hard for me but after i read all this comment n saw that there are people out there living w this hiv thing for years. Now i can say im a new woman
Comment by: Mark Vinette
(Saint Petersburg, FL)
Sun., Sep. 8, 2013 at 8:04 pm EDT
Other than being homeless or not having access to meds there is no valid excuse for not taking your meds. I have been POZ for 15 years and on meds for 12. If you have a headache you take an Advil. What is more important in your life than taking a pill (usually just one pill a day) to stay alive and healthy? There is no other excuse. Who can be too busy or have too much to do to take 10 seconds to take your meds? I am blessed by my continued good health and I would not miss a dose for anyone or anything in the world.
Comment by: John Baker
Wed., Oct. 16, 2013 at 9:14 pm EDT There are so many other reasons not to take meds and I found ur judgement of those who don't hurtful. What about dual diagnoses , intolerable pain levels, quality of life care and finances ? Love all ...lets not send any more pain into the world and judge peoples choice on their healthcare.
Comment by: rm
Wed., Aug. 28, 2013 at 1:08 pm EDT
The simple way to remember your meds is to get and use a pill box. The problem with 'routine' is that its automatic - its something you do everyday without thought - like driving to work - so not particularly memorable.
A pill box is concrete - I can check it in the day and if that timeslot compartment is still full ... !
Comment by: Jason Cuba
Tue., Sep. 3, 2013 at 9:41 pm EDT this is true... a pill box really helps! I've had my pill box for about a year now and on average I'm only missing about 3 doses a week.
Comment by: rm
Wed., Aug. 28, 2013 at 1:00 pm EDT
I think Doctors and sites should explain more fully what side effects can be or look like and the downsides of missing meds. Ill health , resistance to current (first line ?) med class and possibility that replacement meds will be more difficult to take (more pills / times of day) , possibly more cost and increased side effects.
Comment by: lynn solano
(bronx, new york)
Mon., Aug. 26, 2013 at 10:16 am EDT
In my experience as a case manager servicing the HIV/AIDS population for over 10 years, is that subtance abuse plays a big role in being one of the reasons why people do not take their ARV'S. Some may fear the interaction between the ARV and illicit substance while others are busy selling their meds in order to be able to afford their next "hit." I would really like to find an article on this site that looks further into this issue.
Comment by: sherry g.
Sat., Aug. 17, 2013 at 5:43 pm EDT
Look to JESUS, he can comfort, and heal you. GOD is always with you. pray this prayer, LORD I BELIEVE IN YOU, I REPENT AND KNOW THAT YOU ARE LORD AND SAVIOR. PEACE AND LOVE To you all. No Judgement. smiley face sent your way :}
Comment by: Mister DUI
Thu., Aug. 22, 2013 at 3:36 pm EDT Do yo know anyone god cured of AiDS? No? then mind your own business.
Comment by: MEW
Mon., Aug. 26, 2013 at 12:07 am EDT Don't try to discourage someone who wants to believe in Jesus for a cure - even unto death! Jesus I pray that you forgive me of my transgressions - I believe that you are the son of God - rose on the third day - you died for us and shed blood has and can cleanse us from all unrighteousness!!!!
Comment by: merline
Tue., Jul. 23, 2013 at 10:53 pm EDT
Its very sad to read all the stories i thought my life was bad ,hope they find a cure God bless all of you
Comment by: vette
Wed., Jul. 17, 2013 at 7:27 pm EDT
sry so many peeps have side affects. but for my self been postive 30 yrs. on meds for 20 never had side affects. or pro takeing my meds too live. I wake up brush my teeeh, eat, take meds ,way of life. been undetectable 19 yr. and I dont drink or drug!! help alot not that hard. now my baby girl whom at age of 21 pass from the virus cause she did not take her meds I seen many teens pass in 30 cause they dont like to take meds or side affects GOD BLESS YOU ALL
Comment by: Richard
Sun., Jul. 7, 2013 at 6:53 pm EDT
I was on Atripla and could no longer handle how it was making me feel, the first few years was fine, but then it was like I was thrown under a bus. Dr. Insisted I stay on them. I decided otherwise and stopped. Told my Dr. and was given a different prescription of med.'s. Now I take more pills, Truvada, Intelence instead of a once a pill a day. Without any side effects.
Comment by: TC
Wed., Jul. 3, 2013 at 12:19 pm EDT
For the last year I have not taken daily full dosages of my meds. One day I would take a full dose the next would take about 90%, the next day a full dose, the next 95%, the next 85%, etc. However, I do take my meds everyday. I have remained undetectable all the time. I am definitely over medicated and realize it. The doctors have people so worked up over missed dosages that one reader actually wrote in stating that he was a lousy 5 minutes late in taking his meds and he was "worried sick." Doctors........stop being lackeys for big pharma and get the dosing correct....shame on you.
Comment by: Old Timer
Thu., Jun. 27, 2013 at 9:20 am EDT
Tested poz 1987, AIDS since 1991, have had viral loads as high as 600,000, several cancers, and numerous other expected problems. Meds finally brought viral load under control, but get this - I have missed more than half of my doses for the past three years, and still undetectable.
Comment by: TC
Wed., Jul. 3, 2013 at 12:34 pm EDT Yup, I haven't been taking full dosages of my meds for the last year and I am remain undetectable. As my post states....the doctors are lackeys for big pharma.
Comment by: lillian
Sun., Sep. 15, 2013 at 10:53 am EDT reading this has really encouraged me i really cant tell how many times i have missed my med it use to worry a lot at the beginning but not as much lately the last time i was checked i remained undetectable
Comment by: jennifer.c.
Wed., Jun. 26, 2013 at 3:08 am EDT
I've been positive 4 years. At the begining I took meds, but were making me sick. I stoped taking them i changed the way I eat, and live. And take good care of myself. And haven't been sick from colds, flu, nothing. Before it was constantly. Its sad to know the FDA only approves drugs and there statements they say they do. But not when commercials promote healthy products, pay attention to the small paragraphs when promoting on tv things like emergency for your immune system. But they promote drugs even for depression, anxiety, etc. ???. I believe what we are being fed on tv with unhealthy food advertisements its what's gonna kill you, then this microscopic partical called hiv that's never been isolated, or prove it causes these commonly known deaseses we as humans are all exposed to, if not taking care of ourselfs. We get fed by the media what they want all the time, weres the proof. Assumptions are not facts. But money talks louder than a small crowd. Billions of tax dollars spent on this unsolved aids epedemic. I'm sorry but there's never gonna be a cure of a mislead information we are tough as fact. The billion dollar pharmisudical companies have to much to loose.
Comment by: J. Alan
Thu., Jul. 11, 2013 at 8:44 am EDT Hate to let you in on the secret but HIV has been isolated and causes AIDS when it destroys enought of your CD4 cells. There is this other thing called Paranoia that you may want to learn about. Stop watching those right wing nut jobs who say HIV doesn't cause AIDS. ...if they insist ask them to participate in the study I am in. I will give it to them and they can just try to eat their vegetables. Lets see how that works out fot them.
Comment by: Emvaz
Sat., Aug. 17, 2013 at 7:45 am EDT @ J. Alan
Really? It's been isolated? Which study? What methods?
Oh wait, its never been isolated, and it certainly has never been proven to cause AIDS. Please, prove me wrong. Cite me the study. The medicines that are prescribed for HIV directly cause immune failure (i.e. AIDS). Just read the side effects card.
You HIV quacks are nothing but money grubbing eugenecists. Dr Duesberg is right. Celia Farber and Clark Baker are right. Janine Roberts is right.
Gallo, and the entire HIV/AIDS paradigm is a fraud.
Comment by: Alejandro
Wed., Jun. 12, 2013 at 12:22 pm EDT
Thanks GOD in Chile the state guarantee the whole treatment for people living with HIV. If it didn't, I wouldn't be able to afford it. I don't know if missing is the problem (for me, at least), I think the problem is to get used to what taking daily pills mean in someone's life. I've had almost no side effects, thanks God, again.
Comment by: Ray
Wed., Jun. 12, 2013 at 12:00 am EDT
I lost medical insurance about 6 months ago. I had enough to get me through May and have been off meds now for 10 days. I am lost as what to do until we get insurance at the end of July.
Comment by: Janette R.
Fri., Jul. 5, 2013 at 8:26 am EDT GET IN TOUCH WITH THE RYAN WHITE PROGRAM,,,look them up on-line,,,they will take care of yo, gtting your meds !
Comment by: Anonymous
Thu., Sep. 26, 2013 at 9:20 am EDT yes, the ryan white center gives free help on every thing and they can get you on your meds as soon as that same day. i have no insurance and no income but every month my meds are mailed free
Comment by: john
Tue., Oct. 15, 2013 at 4:24 am EDT I lost ins too have u ever heard of people buying of streets or websites I heard its like 60 to 80 a pill also is there any programs out there
Comment by: Rich
Tue., May. 28, 2013 at 12:29 pm EDT
I'd guess I'd be lying if I said it was easy? Maybe just people handle their respective situation differently. I feel like wording should be changed on that because every one has a different opinion on how difficult/easy their situation is.
Granted I'm like a stone when things get thrown my direction I don't get knocked off course, I know many people who have.
Comment by: Pete S.
Tue., May. 28, 2013 at 8:53 am EDT
anyone who is the tiniest bit depressed about being dependent on ANY medicine should stop to think about not even having that option, of living in a period when the medicine was not available at all. And 100% of the friends and family I've lost are no longer here for that reason, NOT because they couldn't afford certain medicines or because the medicines made them ill.
Comment by: john
Fri., May. 24, 2013 at 7:24 am EDT
Really people...blah blah blah, yea, the meds are subsidized or free depending on income. People dont take them because they are irresponsible....the same character flaw that got them infected. HIV was a death sentence before these meds came along...now bitch bitch bitch about the inconvenience of taking them. Lets see..take them or I did....wow big choice.
Comment by: Alejandro
Wed., Jun. 12, 2013 at 3:51 pm EDT I guess the problem is more complex than that. I've been really lucky not to feel almost anything with the pills, but I don't know what I would have done if my situation wasn't this good. If you put all the reactions that medication can cause in the same bag (irresponability), you're just over simplifying a situation which is one of the hardest in life. Aids, and later pills, change everything in your life.
Comment by: just found out n scared
Thu., Jun. 27, 2013 at 7:31 am EDT I think what you said is totally rude and uncalled for and carelessness isnt how you get it cause i was very careful but was with the person for years and would have never dreamed of this and for the med would u wanna be sick as fuc* while fightinv to live
Comment by: J. Alan
Thu., Jul. 11, 2013 at 8:56 am EDT While I understand your point because I've watched people die, some people are sick from meds and it wears on them. Also some people do not get medication as easily as others. They simply need better case management. The programs are just dumb sometime don't work without it. I don't think you were trying to be rude or insensitive. You're just a black and white, rigid and inflexible type A personality. I think I would be better at taking my meds with that affliction. At least in respect to this issue. Doing it with everything in my life? Uh, no thank you that would make me more of an jerk than I currently am and I can be a good one. Just take your meds better everyone. It's like he says.
Comment by: Chef
Tue., Aug. 27, 2013 at 5:09 pm EDT How about the thousands that were infected from the same blood products that was giving to save their lives. ie trama patients, mothers delivering babies, hemophiliacs. You have no idea what your talking about you uneducated dick. Get a life and quit running your mouth.
Comment by: How did I get here
Sun., Sep. 22, 2013 at 6:17 pm EDT If u don't know the details of something don't talk about it. John or whoever u call ur self people with HIV did not get the disease because they're irresponsible shame on you for even thinking that. This shows how u re uneducated. Educate ur self before u open that u call mouth
Comment by: alone
Thu., May. 23, 2013 at 11:21 am EDT
Hi I've been reading all post and one thing stood out the most. This disease affects everyone differently I've been poz for 3 yrs and the hardest thing for me is always alone everyone abandoned me.. I messed up and told who I thought was my best friend and she told everyone now I'm known by the guy who has Hiv.. I'm 33 and lost all enjoyment I'm always alone its really hard for me I'm celibate eat healthy workout constantly and always fight to survive don't drink and no drugs. To me it seems when your starting to make progress something always set me back. I mainly deal with other health issues unrelated to my status and everyone constantly talks about myself wanting me to fail. This truly has put me in isolation which is hard to deal with. I don't miss a dose I take it every time except for when I was homeless. Viral under 20 cd4 650. I hear your stories about some of you and I'm happy.
Comment by: concerned
Fri., May. 24, 2013 at 3:31 pm EDT Its really comforting to know that even though your best friend betrayed you, you manage to get up on your two feet and fight for you. just try to keep it up and don't care, not even for a slightest moment what people say about you.what should matter is you and that you are healthy. GBU
Comment by: alone
Sat., Jun. 8, 2013 at 2:57 am EDT Thankyou concerned. I greatly appreciate your words and thoughts the journey has been hard and will continue to fight. .GBU.
Comment by: kept mouth closed
Fri., Jun. 28, 2013 at 6:13 am EDT that's where you screwed up,i found out in 2001 and even though I lost my job due to PCP hospital stays, the only people that know are my parents,brother and his wife.any other person I just tell them I have immune system illness.most people don't even know much about common illness that they just say"oh I understand". people are vicious when you tell if you have HIV,they treat you like a leper,every once in awhile they send someone around to toss food your way and scurry off quickly.now I am even working part time and my employer knows im on SSDI. but with the fair treatment act,i don't need provide them with anything more than what I feel is needed to do my job.and that means keeping my private life just as it is,and you make things a lot easier on yourself by just keeping only those who need to know as who has your status.
Comment by: LB
Sat., Aug. 17, 2013 at 1:48 pm EDT Sadly, there is still a stigma associated with having HIV or AIDS. Keep your head up "Alone", and while I know how hard it is to reach out to ppl, you may want to seek support from others who have gone through what you're experiencing. Makes it alot easier feeling like you're not the only one who has come up against these things; nothing like having a feeling that there's someone in your "corner". I know of a great org. in Baltimore called "AIDS Action Baltimore". Give them a call.
Comment by: Anonymoose
Thu., May. 23, 2013 at 7:12 am EDT
Don't forget that insurance companies make it painful to get your medication. I spend over an hour every month following the ever changing protocol to order my 30 days worth of Atripla. I am forced to use a mail order pharmacy, am only allowed 30 days worth of a pill I have been taking for over 5 years with great results, and every time I call to order I am transferred numerous times and the phone number to order is never the same. United Healthcare WANTS their patients to suffer.
Comment by: Derek
Fri., May. 24, 2013 at 5:53 am EDT I'm so sorry to hear your friends has abandon you. Just keep doing what you're doing, and look to God for help. I feel you....nothing is worst then feeling abandon. My friend turned on me too. Here one day, gone the next all because I told them I was HIV+. Which i Believed it was the right thing to do. But I couldn't believe in 2011 This was my life. Hiv +, no friends. I worried, worried until being undetectable to 48tc. All in less than 6 mos. I nerver got really sick. My doctor didn't believe I was undetectable 6 mos earlier. On my next visit, he ask me what is going on in your life that would make your ct drop that low in such I short time. I begun to tell my doctor my situation. He told me, if I didn't let that stress go, It will Kill you! I went home and refused to let anyone kill me because they didnt understand what is a true friend. I'm now again undetectable, but It came with a price. I use to take just one pill, but now three. So please takecare of yourself. Your friends don't have to deal with your problem you do. So act like it. Take control. Get out and meet some new REAL friends. And live your life. I hope this helps. I was looking for a new doctor, moving to Austin, Tx. And started to read just what happen to me. So I had to say something. Ok God bless you and keep your head up. Where it matters you haven't changed your friends has. Remember that.
Comment by: Rich
Tue., May. 28, 2013 at 12:44 pm EDT I don't know what plan you have. But UnitedHealth Care is always up my ass making sure it gets filled, not the other way around. They call me three weeks out and always give me the option to do Mail or physical pharmacy. I choose Mail because its more convenient for me. I would do some research as to why they're being difficult if you haven't done so already.
Comment by: David
( New York)
Mon., Jul. 1, 2013 at 12:47 pm EDT It is my firm and fervent belief that part of the insurance companies strategies for profit is to wear down subscribers until they simply quit trying to obtain the benefits they pay for. CIGNA is The Worst in my experience.
Comment by: Lugh YAA
Fri., Sep. 6, 2013 at 10:33 am EDT oWN Sister did that to me was fine before that.Not all good to tell YOU REALISE LATER.If you have kids rather confide in them for their own good not siblings
Comment by: Sophi
Sat., Oct. 5, 2013 at 9:38 pm EDT Hi there, I was also having problems with the mail orders until I found out that you can call your insurance and have them override the mail in and tell them that you prefer to pick up at your local pharmacy. Worked for me! Good luck!
Comment by: Michael C.
Wed., May. 22, 2013 at 12:54 am EDT
Posted this link on my HIV FB Page www.facebook.com/SouthBankHIVe with this comment:
"The reality is that everyday life brings with it obstacles that can block the way between you and your meds."
Today's epidemic is very different from the one we faced decades ago. The populations at risk, the attitudes about infection and the science of HIV have all changed. What we all need to recognize and pay attention to is that people living with HIV in America today face a unique set of structural and lifestyle challenges, including, but not limited to: poverty, hunger, under- or unemployment, illiteracy, racism, immigration issues, homelessness, previous or current incarceration, sexual or domestic violence, homophobia, substance use, criminalization, addiction, and childcare and mental health issues -EACH OF WHICH HAS IT'S OWN ISSUES WITH STIGMA & DISCRIMINATION.
HIV Meds don't make me feel physically "Better" or improve my "Quality of Life", they just make it Longer. And it's a Life nowhere near "Normal" or anything like other Manageable Chronic Illnesses it's likened to.
"U.S. Supreme Court decision: "Subsequent decisions have held that AIDS is protected as a handicap under law not only because of the physical limitations it imposes, but because the prejudice surrounding AIDS exacts a social death which precedes the actual physical one. This is the essence of discrimination - formulating opinions about others not based on their individual merits but rather on their membership in a group with assumed characteristics." from the movie "Philadelphia"
Comment by: aloneinva
Sat., May. 25, 2013 at 1:36 am EDT What a brillant and insightful response. I could not agree more with your statements. People in society ignore the things that do not directly effect them. And because HIV still has a social stigma it is not discussed. To suffer in silence because of your family, society and potential partners is almost unbearable. Anyone with this disease cannot say this is not the reality and trust me I am the ultimate optimist. Taking meds every day is no consolation! At lesst with illness there is sympathy and with death there is peace.
Comment by: Carol
(W. Palm Beach, Fl.)
Tue., Apr. 30, 2013 at 9:05 pm EDT
I never realized so many people were infected with this condition (or is it a disease). Is this a precursor to Acquired Immune Deficiency Syndrome (AIDS)? If so, better keep taking the meds. We have people in the hospice at the hospital where I volunteer, and occasionally an AIDS patient comes there to die. It's not a pretty sight, but it's not nearly as bad as watching people die of cancer, heart disease, on kidney dialysis for hours at a time waiting for a transplant. And I don't think their sexual habits caused their diseases; however, a great deal of money is being diverted from research of their diseases in favor of those with sexually transmitted infections. It's just the plain and simple fact in today's Societal Hell.
Comment by: tony
(st louis mo)
Fri., May. 17, 2013 at 10:28 am EDT it is a disease hiv is not something to chance it might not show physical suffering but its quite painful a lot of people quit taking the meds b/c of the side effects I done it for almost a yr by spouse found out and called the dr and asked but he responded by the grace of god few friends of mine told me I would of been dead
Comment by: Max
Tue., Jun. 11, 2013 at 11:35 pm EDT HIV is a manageable health condition. I have been pos 17 years, on meds for 10, look after my health and no side effects. There are many worse things than HIV. I don't tell everyone, but I have a partner who is neg. I keep well informed. A good life is possible for us, so is love and sex!
Comment by: KK
Mon., Apr. 29, 2013 at 4:59 pm EDT
Wow, so many comments. So, I'll add my voice to the crowd. I can appreciate that the writer of the article is trying to reach a broad range of readers, and that some of the factors she cites might not apply to everyone.
I've been positive for 29 years, and in my 8 years of taking Atripla I don't think I've ever missed a dose, not yet anyway... I'm not lying, and I don't think being adherent is a superhuman feat; it's just a matter of following directions and being responsible for my own wellbeing. Even when I've dozed off a few times over the years, my body and mind is so trained to the routine that I always wake up soon with the immediate thought of taking my tablet.
I'd go for dosing of less than once a day if it was available, but as it stands now I'm pleased to take just one tablet once a day. I hear that people are experiencing side effects and have had multiple treatment failures, and sometimes I feel like I've missed out on some kind of rite of passage, and so I feel almost embarrassed to admit that I like my treatment.
I think I still get a bit of a buzz from Atripla, but maybe someone needs to say, as I am, that it feels great to be keeping myself well. And, because I value my continued health, the prospect of forgetting even one dose is inconceivable. It would be like forgetting to breathe.
I'm sorry, despite my many years with HIV, and having tried a number of medications in the 1990s, I just don't have the experience of feeling wretched because of the medication. I have felt fear and anxiety about the possibility of a break in my supply of the meds, yes, but not distress because of treatment.
Sometimes I wish I could hear more uplifting messages on these online sites, instead of only these stories of how horrible the medication is, because this does not match my actual experience. It's a challenge for me to hold back from adopting a narrative of how bad HIV treatment is just because other people claim it is so.
Comment by: irt
Thu., May. 2, 2013 at 10:22 am EDT meds r not the problem for me either,dealing with arelationship breakdown due to me pos and her negative is the hardest thing for me.11 years into what i hoped would be alife long partnership and its now destroyed.Tried to explain that this is possible and that it can be present in your system for many years before it takes its toll.This is what happened to me,only in the past 5-6 years call i recall any changes in my physicall wellbeing,with these sympton gradually gettin worse over the years untill i became paranoid enough to go get checked.I agree with you its not the treatments,just the stigma and discrimination that scares me.Being alone and not being able to tell any familly or freinds is hard and after being diagnosed after along term infection raises question that can never be awnsered,like who how where when WTF why me.
Comment by: david
Tue., May. 21, 2013 at 9:59 am EDT i'm the same here , i take my pills every morning , no side effects nothing , but all i ever seem to read or hear is how bad it is for everyone , and a lot of other negative things , which does bother me because it makes me think that it has to happen to me ,
but you saying you've been + for 29 yrs and nothing bad has happened makes a change and has made me feel a bit lighter , things like relationships or telling people doesn't bother me , i have a negative partner , he knows , i'm 48 he's 24
when i told him i wasn't even worried that he'd dump me (which he didn't) i was more worried about having it , the thought of being on my own doesn't bother me in the slightest, call me selfish but i got to worry about myself
, good to see a good story for a change
Comment by: Robin
(Kanai Peninsula, Alaska)
Mon., Jun. 3, 2013 at 8:01 pm EDT Atripla has been a great change, though I have had to learn to take it several hours before bedtime to avoid the nightmares! One horse pill a day compared to 37, and I can eat grapefruit again. Giving up sex for the last 20 years has been the most difficult emotionally and being on the right antidepressant did wonders. I am lucky to have the love, support and companionship of a compassionate understanding family. Talking about it has become much easier over the years and instructing the grandchildren on how to avoid STDs has given me a new purpose. It has been many years since I wake up with a dread of my infection. I have learned to live a fulfilling and very happy life with companionship that does not include sex!
Comment by: Max
Tue., Jun. 11, 2013 at 11:42 pm EDT I agree. I've been pos 17 years and on meds for 10. Great, no side effects, undetectable. I'm happy about the meds and the new science about reducing transmission. I don't listen to the negative stories, a lot of it is about faith and hope, keep your heart happy and love alive and maybe the body can then love the neds. I'm a romantic and I love sex, so never planned on giving that up. It's good for your health. I feel like a normal, healthy, sexy person.
Comment by: Queenyalann1
Sat., Apr. 27, 2013 at 12:45 pm EDT
God bless all of u that made any comment above, i read them all! I was dianosed in 1992 in High School, i had gave blood when Red Cross came to school! I am so blessed & Highly Favored in the Lord! I am a Elite Controller, which means my years old body controls my HIV Virus, my Viral Load is less than/under 20%, my CD4 Count is 880 , I am 38 years & been Poz for 21 years with no Meds! I have 1 child he is 15, he is HIV Negitive, his dad my ex husband is is HIV Negitive, my 2nd ex husband is HIV Negitive, both marriages were abusive! I am a single God fearing beautiful light skinned black/cherokee indian independant woman working full time for a great company, my Poz status is very private, i havent told my son, my mom doesnt beleive im Poz to this day! My 2 ex husbad
Elite Controller,which means my body controls my HIV Virus, I have never been sick! My Viral Load is less than/ under 20% undetectable, my CD4 Count 880, I am 38 years old its beem 21 years
Comment by: Mike Z.
(New York, NY)
Sat., May. 11, 2013 at 1:15 pm EDT I am glad you are doing well and are an Elite Controller, but saying that you are more "Highly Favored in the Lord" seems to imply that those who aren't as lucky as you are somehow not as blessed by God. That is not a good thing to say. I wish you continued luck.
Comment by: d b
Thu., Apr. 18, 2013 at 8:07 pm EDT
my young daughter died from aids 10 years ago,iam still grieving.her medication was 45,000 per month.igave her every thing icould afford but she wanted to die,because,family and other people treated her so bad.i was away in another country working so icould support her and the other children.she was only 17,i never forgive my self.take care of u self guys, may god give u all the strength.
Comment by: Rick
(Santa Monica, CA)
Fri., Apr. 12, 2013 at 3:45 pm EDT
I found out I was positive in 1993 and was put on AZT (0ne of the first drugs on the market) and it made me sick to my stomach everyday, it was a real nightmare. But then the newer drugs came out and my doctor had me try different combinations until I found the right ones for me.
The best thing you can do for yourself is find a good contagious desease doctor (sometimes the best place to look for one is in a university, such as U.C.L.A. ect.)with all the medications that are on the market these days you should be able to find the right"cocktail" Don't give up, you can still enjoy a happy long life.
Comment by: Albert
(Winter Park florida)
Fri., Apr. 12, 2013 at 8:10 am EDT
Ok in the beginning, it was a little hard to remember because i was young and depress about having HIV, (( went had counceling )) it helped alot, but i finally realized I have to fight it was hard at first because i couldn't believed that my ex gave it to me and not telling me, I always had told guys up front before dating after my ex past away 13 years ago. talk to someone that can help you. Have a great day.
Comment by: Anonymous
Wed., May. 1, 2013 at 2:57 am EDT Havng sex with a man will do that to you!
Comment by: Albert
(Winter Park florida)
Fri., Apr. 12, 2013 at 7:57 am EDT
How dare they say we LIE, I don't!!! I TAKE MY HIV MEDICATION EVERY DAY AT LUNCH TIME. Everyone is different,and why would people Lie or not take there HIV medication that is STUPID, I WANT TO STAY ALIVE, I HATE HAVING THIS DISEASE, NOTHING I CAN DO ABOUT IT BUT TAKE MY MEDICATION AND HOPE AND PRAY FOR A MIRACLE AND THEY FINALLY FIND A CURE. My ex forgot to tell me he had it?? but I forgave him for that, and he took great care of me and LOVED ME and felt guilty ever since he did. Complera has worked great for me. Have a great day to all.
Comment by: Pete Rimmler
Mon., Apr. 8, 2013 at 9:18 am EDT
I, for one, take my medication every night. It is no trouble at all, and I REALLY dont appreciate being called a liar by the author of this article.
Comment by: Anonymous
Sun., Apr. 7, 2013 at 3:18 pm EDT
I just started to take my hiv medicines a month ago and since then I started to feel a strong pressure in my head,not a headache ,burning feeling,slowly became aggressive from them,i just worry its gonna be worse every day and I must take them "forever"...Every day I wake up I must take,because my parents give them every morning to me and they look if I swallow it or not,so I must..its a nightmare,every day I must suffer..
Comment by: gary
Sat., Mar. 30, 2013 at 9:51 am EDT
i was told I had AIDS in 1992. I took all the toxic pills up until 2003, then realized the pills themselves are horrible. So with lots of thought and reflection I decided not to take any more in 2005. I don't know my CD4 count anymore, it was 52 the last time it was checked. As for viral load I don't know. All I do know is I survive in better health without them dam toxic pills that had me squirting like a goose, puking, headaches, hallucinations, bone pains, liver issues, kidney problems, pissing blood, and the list goes on and on. I'm sorry but I'm not going to ingest another dam pill ever again. I don't believe that after 30 yrs all we are left with is take pills blindly like a sheep would because some doctor told me I had some proteins in my blood that are used as markers that I have a disease thats going to kill me if I don't take the super toxic serum. Good luck to you all with that way of thinking. I'm alive, still eating a proper diet, hydrating, exercising and occassionaly racing motorcycles. The cure will never be found until the lie has been exposed. That take pills or die is a blatant trap to keep you in a state of belief to keep taking the product. Live free, dump them pills into the toilet you have been praying to for 3 hours because of them.
Comment by: J
Tue., Apr. 2, 2013 at 2:40 pm EDT I feel really bad for the people who love you. Just google "AIDS denialists that have died" and their excuses sounded a lot like yours. Oh the meds are so toxic, oh the side effects are so bad. Well no one is denying that. But you have a disease that is ravaging your body and is much worse than the medications are on your body. Until there's a magical cure, meds are the way to go, and sticking your head up your rear end in denial won't change that.
Comment by: Rhiannon
Wed., Apr. 3, 2013 at 10:51 am EDT I do not think he was making excuses not to take them. I have been o HIV meds for over 23 years and the meds its self have done the most damage to my body.. NOT HIV ..These Docotrs want to shuve those damned pills up our ass 24-7 yet they dont want to help you with anything else such as PAIN etc.. side effects from the damned HIV meds.. BULL..
Comment by: Max
Tue., Jun. 11, 2013 at 11:54 pm EDT I was diagnosed in 97 when the triples came in. I was a denialist until 2002 when I ended up in hospital with 50 CD4 and 10 kilos lighter, massive headache, couldn't eat or drink. Started on the meds and never looked back. I gained weight, hair grew back, CD4s now in 600s, VL undetectable, no side effects, normal life and health, good love life too. I feel lucky to have the meds and I'm grateful. I take them every day without fail and with love.
Comment by: Alejandro
Wed., Jun. 12, 2013 at 2:55 pm EDT I was a denialist until I saw that every denialist in my country started to die. All the people I talked to, all the things I thought to be true, turned to be just an irrational way to avoid the reality that HIV exists and it causes AIDS. How can I say that? Because all the other people I also met that took medication, survived. That's when I realized I was wrong and I decided to go to a hospital. My mother didn't agree with me and I could say she hasn't agreeed yet, but, what I often say to her when this topic comes to table: mother, evidence, just look for evidence and you'll see that pills are, unluckily but thank's God, the only way to survive, until the cure is found.
Comment by: mark
Mon., Jul. 22, 2013 at 7:35 pm EDT You got to be kidding me.your lucky.friends stopped because of being on disability sick of it.lve seen them whither away like paper.pills no it saying don't take your pills is stupid and for someone worried about taking them you mess them up.
Comment by: HopeIsAlive
(Washington DC )
Fri., Mar. 29, 2013 at 3:28 pm EDT
I read all the comments and I just started this med called stiblid I was just recently told I had Hiv when I was in a Mental Facility back in January before my birthday I was told in the emergency room that everything was fine and as soon as I went upstairs and meet with the physciatrist she told me I had HIV and Syphilis She was very cold hearted and showed no concern for me I know it was not a death sentence but I was alone and had no one to ask me If I was okay My viral load was 50,000 when I find out and a month after taking striblid it became undetectable my cd4 count hasn't change but its in the 500 Im scared because I just started this lifetime regimen and I will not give up on this fight but I am aware of all the things I will be facing They say this medicine can make my liver go bad I been having weird dreams and close to severe headaches I just pray to god that he gives me back all the strength i have lost before taking this medicine I used to be strong and know im starting to feel very weak When I read everyone's comments and I see how you all are dealing with it so positively it give me courage to do the same thing Im 22 and I have a full life ahead of me If I continue on the path of doing whats right and taking my meds and protecting myself from all partners Ill see 70 .I lost alot of trust for guys when I contracted this virus I trusted to many in the first place I regret the things I was doing and I often wondered if this was a curse from God for living the lifestyle Im living but I cant think like that I must handle the situation as a adult and understand that you are the only one that can save you because others dont care or dont even know that they are infected So please use protection or just dont do it
Comment by: Loz
Sun., Apr. 28, 2013 at 9:03 pm EDT Don't give up mate.I got diagnoised 7 years ago,started on meds last year.As for 'A Curse from God',don't know if you have any religious convictions,but anyone who trys to put that angle on you ain't worth knowing anyway."Let he who is without sin cast the first stone".Know what I mean.Keep yer chin up.
Comment by: irt
Thu., May. 2, 2013 at 10:48 am EDT dont loose trust or hope,stand fast hold the line.Being told your pos is really hard only found out 6mths ago and my wife of 11 years is negative.the relationship has broken down because she is in denial and has trust issues with me now.This is harder than the diagnosis meds,stigma etc rolled into one.No matter what happens in this life,how many knocks we take you must stall...catch your breath and fight on.Your strenght will come back i was cd4 180 vL 12000 now undetectable and cd4310.i feel way better than when i went to get tested.As for the doctor being coldhearted thats just a woman being exactly that to another woman.Some women find it hard to have emphathy for another in circumstances like this so dont read to much into that,she may also just have been havin a bad day.I know what my soon to be ex wife is like on a heavy period(Lol)she scares me.But listen be strong stay safe eat well and be blessed as you are.In ireland we cant even talk openly to anyone about this as the stigma and discrimination is so strong.Best Wishes irt ireland
Comment by: Christine
(St. Johnsbury, Vt)
Wed., Mar. 27, 2013 at 7:18 pm EDT
I'v had HIV for 20 yrs I just started on meds and it makes me mad that i have to take them and i hate the side effects. I take other medications too.
Comment by: sweetness
Tue., Mar. 26, 2013 at 10:18 pm EDT
I went on holiday and was fine came back started to get ill.. I had just contracted HIV.. Last time I plan to go away LOL. I was diagnosed 6 months ago now and because I'm in my 50's went onto Meds straight away. I sometimes take Meds very late like 10 hours late. I forget even though I have set 2 alarms on my phone.I live with a terrible taste and my mouth always feels so dry inside.I feel very very depressed although I take 200 mg of Anti Depressants a day. I feel so so tired all the time, although I'm lucky in a way as I live in the UK and medication is free. But it don't make it any easier to live with.. I just want to be normal what ever that is..
Comment by: ScountryOCCI
Sat., Mar. 23, 2013 at 8:00 pm EDT
I HAVE BEEN DEALING WITH THIS VIRUS SINCE THE FIRST REPORT ON IT in 1980 1981 1982 o.k I remember waiting for a test to tell you if you where positive or not,and yes I was,it has been 31 years I have had this crap,i totally understand taking meds get's old.I really am just aboht over meds,everyone around me are just so used to me having the virus that I find myself all alone,i've lost three partners and more friends died then I can even remember,we are being held hostage by a virus and a country that cares about money then human lives.It's very scary to really even go to docs today,most of them do not care about our lives they care about how good your ins. is.It's sickening...............
Comment by: Tom
Sat., Mar. 23, 2013 at 10:49 am EDT
I'm an American, living and working in South Africa. I've been on Atripla for several years with great results. I buy the med at the local pharmacy for the equivalent of $70 USD per month! In the USA, the same med was costing my insurance $1,200 USD per month. Why are meds so expensive in the US?
Comment by: mark
Mon., Jul. 22, 2013 at 7:40 pm EDT Wow.ya it's pricey companies here rip us off
Comment by: Howard
Sun., Mar. 17, 2013 at 12:46 pm EDT
Hi I just went to the docs and I tested neg for HIV but I still feel weak in side even in my legs I feel like I forget everything an my stomach is always upset! I had unprotected sex about two weeks ago! I just really scared I have four kids and the youngest one is three! I know they really need me! I told my wife an she forgave me! I'm gonna go to the hospital today cuz I'm still not feeling good! God bless everyone! And someone please pray for me so that everything turns out ok!
Comment by: KR
Tue., Mar. 19, 2013 at 4:21 am EDT Praying for you Howard. As a man going on 26 years since been diagnose with HIV. I can tell you, I had no illness or felt weak or any other symptons commonly suggest getting tested. Two weeks is a very short time for the virus to grow detectably for most people. However, if you did not test for other STD's, I highly recommend that you do so. Going to the hospital is a good idea so that they may run other test on you and examing you very closely. You must be open and honest with your health history and personal life with your healthcare providers. Drugs, alcohol, needles, sleep patterns, work stress, lack of exercise, poor eating habits, etc and more can cause weakness and fatigue in your body.
Comment by: Jesser K.
(Corning, New York.com)
Mon., Mar. 25, 2013 at 10:02 pm EDT Out of curiosity, exactly how many times have u pulled out ur Bible and Prayed for those of us who do have carry HIV, personally 27 years, before you go out and have un-protected sex, with children at home ad a possible wife? Scary isn't it? So my advice to u us next time u decide to take a walk in a rainstorm without your Rubbers sweep around the block and pick one or two up, if nothing but for the good of your three-year-old.
Comment by: Moochelle Sotero
Mon., Mar. 11, 2013 at 4:13 pm EDT
even if you take those meds you will get some weird cancer and die at 50. Use condoms, avoid the bug
Comment by: jane doe
Fri., Mar. 8, 2013 at 3:03 pm EST
I found out that I have had hiv since I was 4 and I have never taken medications. I am on a 30 year study without meds. I feel fine but find myself a little depressed about not getting help from doctors when it comes to prenatal care. I want to stay off meds and complete the study. I also want my baby to get the very best. I wonder if there are meds for babies that help them not get the virus while I am breastfeeding?
Comment by: Jane Doe
Sun., Jun. 23, 2013 at 10:27 pm EDT I read your story and if you are pregnant it's best to take the medicine so that your baby will not get it. It's best to be safe than sorry. I wish I would have listen to my mind and I wouldn't have this disease today.
Comment by: Nina
Mon., Feb. 25, 2013 at 7:07 am EST
I' be been positive for 16 years now. When I was first diagnosed I was still a teenager. I contracted the virus from a boyfriend who was in prison having sex with men. Now at this point in my life a family children and a loving husband but now I'm getting to a point in my life where I'm tired of taking medication everyday. I been u detectable for years in perfect health and loving life. But all of a sudden I've been missing weeks at a time of not taking my meds. I told my husband just last night I'm tired of taking medication everyday. I'm starting to feel like I'm not gone live a long life like I first daughter at some years ago. I'm a really strong person a lot of people tell me it all the time and this is something I know for sure. But even the strongest person needs s stronger person to carry them. He tells me he needs me he can't live without me. I don't never wanna leave none of my family but I'm just so tired. He don't understand because its not him who has to take meds everyday ( he's negative). I feel like the virus is winning now I'm nolonger in the lead
Comment by: jan
Wed., Feb. 27, 2013 at 9:04 pm EST You are in perfect help,skipping your meds and think you are dying? I am confused.I think YOU need to think before you write.
Comment by: jules
(Los Angles, CA)
Sun., Mar. 10, 2013 at 9:22 am EDT I just recently diagnosed with HIV virus last in April of 2012 from my boyfriend I thought he was devoted to me the whole time instead he was out having sex with other woman that lead for him to contract the HIV virus and passed it to me. I found out couple months later after I got very sick and end up in the hospital and thats when the doctor told me I have HIV, Menigitis, Hepatics B. They immediately started me on medication and my body was resistance to it at first but then later I started to responded to the medication. So now Im taking all these medication and its helping now. My strength comes from the supports of my family and children they gave me an inspiration to live my life.
Comment by: Splify
Tue., Mar. 12, 2013 at 11:25 am EDT You need to take your meds babes. As for the others, almost everyone has a cell phone and almost every cell phone has a alarm clock. Program the cell phone to notify you twice per day. It's just like recieving a daily text, devotional or a call. That will help. After awhile it becomes automatic and there'll be days when you'll remember right as the phone is about to ring. Habit!
Comment by: elisa
(san francisco ca)
Mon., Mar. 18, 2013 at 8:01 pm EDT So which is more important some pills each day or having your family for years to come? Sounds like an easy decision to me but it's your life. God Bless.
Comment by: Houstonian
Mon., Mar. 25, 2013 at 10:56 pm EDT Nina,
Hun, don't give up. Nina, you must not forget this fact, you are not a lone in this battle, keep remembering that,ok. This is my first time looking at this site, I know that sometimes it just takes a stranger to give someone a shove,and a warm understanding. I'm going on 41 yrs positive now. I'm 57 now. And if I can keep moving on without a spouse and children, you must keep going to. I have been alone all my life,my family want nothing to do with me. Ok. Yes it's hard, the med's burn our stomach linings,mess with our brains cells,the diarrhea,sickness,the constant burning inside,swallowing milk of magnesia all day long. When your feeling alone in this,you think of me here in this one bedroom with my dying Mango ( my doggie) he's 20 yrs old and 1-lb a tiny teacup Yorkie that's dying now. I wish I had someone in my life.You are lucky to have your wonderful husband by your side, and your kids. Nina, just think of all the millions of us infected,and millions that have no one,and only a 1/3 of us have med's to take. You stay strong for your self. When I really feel bad, I look at others that are worse off than I....
Bye Bye now,,,,Houston
Comment by: Robin
(Kenai Peninsula, Alaska)
Mon., Jun. 3, 2013 at 8:18 pm EDT Over the past 20 years I have been off meds for a period of time. It is important to get back on them as soon as possible. The virus is undetectable in me on meds but I have read the results when I lapse which motivates me to be more diligent. One thing that I have learned is to use positive affirmations: "Everything is wonderful!" "I'm feeling great!" "Couldn't be happier!" and I am reminded of all the good things around me. I smile even when it is difficult and will often be found singing (you can't feel bad when you sing).
Happiness is an achievable state of mind. Focus on the good in your life...and ask your doctor if a change in medication is in order...I became much happier with a one-a-day dose of antivirals!
Comment by: 9Edge`st
Tue., Feb. 19, 2013 at 7:00 pm EST
I take my meds every day. However! This means I am reminded on a twice daily basis that I have the HIV virus
Comment by: Colby Taylor
Sat., Feb. 16, 2013 at 6:08 pm EST That is bunk, i skip meds because the side effects are HUGE
Comment by: JWM
Wed., Mar. 6, 2013 at 11:10 am EST You are right, the side effects are debilitating. I had two adverse events that put me in the hospital The last one almost killed me. I have the aerobic function of an 80 year old man. Twelve different doctors just made light of the damage. Some said the damage is reversible. It is not. After 7 months off meds I went from critical to very ill. It has been six years since I stopped NRTs. Still not back to normal. The message that is lost is the following. Yes, the meds keep one alive. But one will live in a dense chemical fog.Nerve damage will ravage the body. Organs will be destroyed. And the toxicity over time will kill you. That is the truth of living with HIV and dying from the meds.
Comment by: Robin
(Kenai Peninsula, Alaska)
Mon., Jun. 3, 2013 at 8:23 pm EDT I usually take my meds with alcohol!
I am 65 and find that being physically active helps to beat the side effects, exercise releases dopamine in your system.
Being alive, sometimes with neausia, is preferable to the alternative!
Comment by: stuart
Wed., Jan. 23, 2013 at 5:36 am EST
AHCC: Active Hemicellulose Compound (Active Hexose Correlating Compound)
ACETYL L-CARNITINE & ALPHA LIPOIC ACID ,
these help counter act against side effects of HIV meds , and the good news is they're 100% natural so no side effects whatsoever , look them up you'll be amazed at what they can do
Comment by: nicole
Tue., Mar. 19, 2013 at 4:53 pm EDT what exactly is these? Are they just regular vitamins that I can get at the pharmacy??
Comment by: Michael
(New Orleans, LA)
Tue., Jan. 22, 2013 at 2:15 pm EST
I have been on Truvada and Isentress for 2 years. I do try to take my meds daily. What works for me is to take them at bed time - I'm generally ready for bed within an hour or so of the same time each night. When I take my night meds, I place my morning meds on top of my coffee maker. Come hell or high water (and that happens here in New Orleans) I ALWAYS have coffee in the morning ...and see that little orange pill waiting for me. Last week I had blood work - t-cells at 610 and percentage 39.1% and undetectable.
Comment by: Naturally
Fri., Feb. 22, 2013 at 10:12 am EST I'm so happy for you keep taking your meds. My mom has the HIV virus and when she goes to the doctor she is undectable as well keep up the gd work. May god bless you.
Comment by: jules
(Los Angeles )
Sun., Mar. 10, 2013 at 9:27 am EDT I take the truvata and the vermune and it helps me alot to be able to get though my day. The only problems is it doesn't bring my T-cell up fast enough so my doctor is trying me on a different medication but im affarid of the side affect on the new one she said the side affect is lost of memories.
Comment by: Diane
Mon., Apr. 22, 2013 at 6:06 pm EDT I'm on the same meds, I was diagnosed 10-2013,my meds are working very well for me thank God, I started out with cd4 33 & viral load 181,000 I thought I was going to die but thanks to God and an awesome family for support, I'm dealing with this. So I say to, stay encouraged, I know a cure will become available.
Comment by: Carlos
Sun., Jan. 20, 2013 at 7:29 am EST
Now I feel stupid. That's cleaerd it up for me
Comment by: Sheila Borton
Tue., Jan. 15, 2013 at 2:12 pm EST
I have forgotten my meds a few times and once I do remember I do take it right away.But I still seem to forget to take my meds.Which gets me down,because I was told I can use my cell-phone as my alarm clock to take my meds.And it does work well.So I now don't forget to take my meds.Thanks to a frriends advice.
Comment by: Jim
Wed., Jan. 2, 2013 at 4:17 pm EST
Hey, all I read all comments. Thx to God for the lucky who can access the meds. Am working out my final year in Varsity (male, 22yrs old) but almost hopeless, for my siblings and poor mother. P'se positive or so fellow help & intervene when there is still chance for me. My health condition not very pleasing. I've leave my mail address, but fear scammers! Grateful for anybody's comment
Comment by: Sofia
Mon., Mar. 4, 2013 at 9:44 am EST Hi Jim, I want to wish you and your family well and tell you how much I empathise with your situation. I'm positive and my husband passed away a couple of years ago. It is so great you are still attending Uni and helping your family. I hope you can get the drugs you need to survive. By the way, I love Kampala! It such a beautiful city as is the rest of Uganda! I have visited twice. Kind regards and all the best to you.
Comment by: Bella
Mon., Mar. 4, 2013 at 8:37 pm EST HI Jim, I have been positive for 9 years myself and thank god evderyday that I live in a country where the medication I need to save my life and prolong it till i'm in my old age is readily available. So I really feel for you and your family... I wish I could take a long enough pill holiday and share my medication with you... We have so much of it in this Country it hardly seems fair that you should have to suffer and go without!! My dream is to come to Africa and do a mission helping young HIV+ expectant mothers to give birth to children without the virus. It is very possible and absolutely worth the fight so I am hoping to do that soon. I would hope that there is someone out there who can help you and your family. I take my hat off to you for continuing university even being faced with so much adversity... And I will start putting you and your family in my prayers in the hope that you may find the desperate help that you need...
All my love and warmest wishes. Bella
Comment by: john
Thu., Dec. 27, 2012 at 9:16 am EST
I would like to say to those having trouble taking the pill. It breaks in half if you work it long enough and have a little strength. I hope everyone continues to take the pill if they can. The reason I broke them in half is because I don't trust the state to keep me on medicaid. Now I take the whole pill but I'm a few months ahead. I am shocked to hear these stories of the people whom can't get the medicine due to cost. Thank god the patent on atripla runs out in 2017. It will get much cheaper.
Comment by: Ma
Sun., Dec. 16, 2012 at 3:34 pm EST
I been HIV for the passed 9 Years and i am taking Atripla and doing very very well with undetectable. But the only problem i have is i am Illegal in this country ( Been here 24 years ) Contracted HIV thru my boy friend who passed away. My monthly insurance is about $700 per month and $25 for the Atripla. I have my check up every 4 months. I am so broke every month because of my insurance bill- I make only about $2000 a month- Have to pay rent and other expenses. I know i have to take the medication to stay alive. Anyone know is there any program or organization that i can turn to- i am willing to pay but just with some financial assistant.
Thank you !
Comment by: Joe
Wed., Dec. 19, 2012 at 3:11 pm EST I hope you have gotten an answer by now, but here is the link to Atripla's Co-Pay assistance program:
Because of your immigration status, it may be hard to get assistance with this and your insurance premiums, but it is always worth a try. If you have a social worker you might see if there are insurance premium assistance programs, in your state, that are available to you. Good Luck!
Comment by: Hal
Wed., Dec. 19, 2012 at 8:32 pm EST Like you Ma I've been HIV negative and undetectable for about 12 years now. I too take Atripla to manage the virus. I don't care what some people or the nay-sayers say, HIV/AIDS and all the other cancers of the world are lab-created by our very government; and to believe otherwise is pure foolishness. You can try a privately-funded medical program that doesn't require you to be a U.S. citizen. The private program here in South Carolina is a part of the Ryan White program. A privately funded program where they give you a case-worker,food,a gas card and they make sure you get your medication via the S.C. ADAP program by mail.
These drug companies are making a killing off of us and insurance companies while we struggle to survive. The retail price of Atripla tops $1500-$1800 for 30 pills!! You know things are fucked up here in the U.S. when you have to decide whether to buy medicine to live to see another day or feed yourself and your family. Marvin Gaye said it best: "This ain't living..."
Comment by: Tom
Tue., Feb. 5, 2013 at 1:39 pm EST Hey Hal: Life is not free. You are obviously paranoid (HIV and all cancers created by our government). Yeah, Hal, the government is out to get you! Boo! How about keepin' your dixk out of the axs, needle out of the arm, or whatever you done, and quit blaming the government. It really makes you look dumb. I am sorry that you are having to deal with such an illness, but hey at least they fixed it to a point where you have the opportunity to live.
Comment by: ca
Sun., Feb. 10, 2013 at 8:38 am EST i make over 2000 monthly and still qualify for med cal, i have have insurance through my work as well and with med cal they pay the difference. you can also get a hold of gilead directly they will put you on a patient assistance program to pay for the meds. the phone number is 866-290-4767 and its for assistance for atripla.
Comment by: CATHY
Sat., Mar. 9, 2013 at 10:46 pm EST CALL UR LOCAL HEALTH DEPARTMENT OR COUNTY HOSPITAL THEY CAN HELP, USE ALL THE GOVERMENT RESOURCES IN UR CITY GOD BLESS YOU MY DADDY HAS BEEN LIVING WITH AIDS SINCE LATE 90S
Comment by: nicole
Tue., Mar. 19, 2013 at 4:59 pm EDT hey tom guess what I was raped over four years ago and now have to live with this horrible disease... I think your comment was way rude not everyone had a choice in the matter. Your right about one thing life is not free.. We all have to pay one way or another.. Becareful how you treat people because karma is a -----!! Good luck with your life!!
Comment by: Sophia
Wed., Apr. 3, 2013 at 4:43 pm EDT Sorry for your loss please try to apply for assistance with bravia insurance they help all people.
Comment by: David F
(Monkee Town, Illinois)
Tue., Dec. 11, 2012 at 5:26 pm EST
Meds managemnt will extend your life with the HIV virus, yes the side effects shake us all ups and downs, vomiting, diarhea, crazy dreams, shortness of breath, I never had a crazy ass promisicuis sexual nature neither have I been in any gay relationships, sharing needles, I will keep saying and testifying that as I was place on the BLOOD PRESSURE PILL ( Lotensin )it reduce my white & red cells causing my immune system vulnerable for attacks, I was told as a long usage of Lotensin, I will damage my kidneys and will be place on Dialysis.
Comment by: Toya
Sun., Dec. 9, 2012 at 5:09 pm EST
I am HIV neg but just found out my brother is HIV positive.be tried to hide it from us and my mom found the paper work while cleaning out his car.im soo emotional right now but I let my brother know that I still love him the same and that we are in this together I will be his supporter even though he is still n denial.i have to stress that he takes his meds and still enjoy life.i love u all and know that ur no different from anyone else
Comment by: jules
(Los Angles )
Sun., Mar. 10, 2013 at 9:38 am EDT That's is the best thing you can do for your brother, when I first got dianose with this virus First I did not know how I am going to explain to my children and family and when I got it from because of the promising relationship I was in it and watch my dream slipping away but when I started to open up to them they were very supported opposited of what I was thinking so good luck and god bless to you are a very good sister.
Comment by: monica
Sat., Dec. 8, 2012 at 6:31 am EST
Im hiv negative but resenly recived newd my dad is hiv positive. His so depressed and so am i. Been reserching meds are so expensive im un employed with 3 kids including a newborn my dad lives in mexico and berley has to eat everyday that if they get to eat i try to help as much as i can. I dont want my dadd to die mom is gana go test monday i really hope she r
turns out negative. Anyone knows oforganisation that can help in mexico please post a comment i dont know his virals or cd4 counts yet .. im in tears please help how does one cop with these news how can i make daddy feel better
Comment by: c
Sun., Feb. 10, 2013 at 8:44 am EST have you dad call gilead for assistance if you find out that he can take atripla, 866-290-4767 they will put him on a patient assistance program
Comment by: sylvia
Tue., Nov. 27, 2012 at 2:59 pm EST
there are to many pills why dont they make liquid for people who cant take pills
Comment by: tonya
Wed., Dec. 19, 2012 at 9:59 pm EST they do but it taste so nasty you mind as well stay will pills
Comment by: Riff Raft Jones
Mon., Nov. 26, 2012 at 10:45 am EST
How come there are no sliding scale programs? It seems that you can pretty much get free medicine if you fall within government guidelines -33000 in MN). Make $1 more than you are eligible for pretty nothing. The drug companies offer copay plans which would $125 off of my $3,400 monthly RX. I've gone everywhere and they feel for me but there is nothing they can do. Even case management is based on income. Because youre poor does one need more guidance than someone making a bit more money? Food shelves , emergency rooms, and collection agencies who criminalize bad health as a moral deficiency. Making money off the misfortunes of others is evil.
Comment by: Ben
(Long Beach, CA)
Sun., Nov. 25, 2012 at 1:32 pm EST
I tested positive for the hiv virus in 1985. I now take four anti-viral medications and my viral load is undetectable with my cd-4 count at 642. I take my meds religiously before going to bed; I find that is the best time to take them. I thank the ID clinic at the VA Hospital in Long Beach, CA for providing me with a state of health that has allowed me to live a productive life.
Comment by: Jules
(Los Angles )
Sun., Mar. 10, 2013 at 9:40 am EDT Good for Ben Im receiving my treatment with the Los Angles Clinic and they are very good to me.keep up a good job you are doing good
Comment by: Healed
Fri., Nov. 23, 2012 at 9:34 pm EST
Been off and on meds epzicom reyataz norvir for 6 yrs. - mostly off - people please take your meds! As I type this I'm laying in a hospital bed. The slightest movement takes my breath away. This is the 4th episode of. PCP. I got the lesson now. It's only by the grace of God I'm still alive. Almost had to be placed on a ventilator Sun. night. Doing much better still can't sit without gasping for air the O2 is helping. Save your life and your breath - Take Your Meds.
Comment by: ronH
Fri., Nov. 23, 2012 at 6:46 pm EST
ask an insulin-dependent diabetic about it some time, they have to take their medication multiple times a day (by injection with a needle, ouch!) after testing their sugar with a cut on their finger (ouch, ouch). And if they forget to eat after injecting themselve they may go into a hypoglycemic coma and die - that day. Man, am I glad I have something that is a simple to treat as is HIV infection. A pill aday to live and ya don't die instantly if you forget your meds! Easy! I considered my diagnosis as a "near death experience" and I am still amazed that I did not die. That pill each day reminds me that I was a lucky one - I got to have more days. Side-effects - i got the rash (6 weeks), still get the runs and morning nausea if I don't watch what i eat. They warned me about the dreams, but WOW - it was like going from a grainy old color tv from the 70's to brilliant HiDef technicolor. Like a rollercoaster ride at first, ut soon I began to look forward to my nightly "triple feature" (or atripla feature)- I don;t get these as often now, but always enjoy them. I wish I had that kind of imagination when I was awake! So I've been lucky. People in the USA dying because they can't afford HAART is a national disgrace. Give the meds free to anyone who makes less than $100,000/yr. I sure hope Obamacare somehow helps to make something like this happen. To those without the $ - keep calling and asking, find free clinics - tomorrow it may change.
I'm AIDS (cd54 at diagnosis) for 8 years on atripla now with cd850 and nondetect.
Comment by: luesue
Mon., Mar. 25, 2013 at 12:40 am EDT Well said.
Comment by: sg
Sat., Aug. 17, 2013 at 5:54 am EDT right on.
Comment by: Felecia
Tue., Nov. 20, 2012 at 7:22 pm EST
Ive been hiv positive for 2 years now and I recently was put on meds (Atripla). I havent been taking them like I should because they make me throw up in my sleep but I am going to get with the program before its to late. I have two kids also that need their mom.Its been hard for me mentally everthing else is fine sometimes i hate myself for allowing this to happen, but hey Im still here this is just another hurdle I have to jump. Yall be blessed and never give up on living.
Comment by: Mike
Tue., Dec. 11, 2012 at 5:40 pm EST Hi, I have been pos for 3 years now and I started with Atripla, Thank God for that one a day pill. Well I never threw up but I was sweating like crazy drenching the sheets. Now I have to work on losing weight ned to learn how to eat right,excercise etc. btw I am undetectable.
Comment by: Robin
(Kenai Peninsula, Alaska)
Mon., Jun. 3, 2013 at 8:39 pm EDT I had to learn to take Atripla at least three hours before bed and find that a peanut butter sandwich with the pill prevents the nighttime problems...except occasional bouts of night sweats...but still sometimes vomit in the morning. Smoking a bowl of pot early starts me in the right direction, and stimulates my appetite!
Comment by: jon l.
Mon., Nov. 12, 2012 at 6:52 pm EST
i have been hiv+ for the past 4 years...discovered when i had 2 strokes, and i automatically know when it is time for me to take my meds. my virus is now undetectable and i feel great
Comment by: Anonymous
Thu., Nov. 15, 2012 at 9:40 pm EST SO BEFORE THE TWO STROKES YOU HAD NOT IDEA YOU WERE HIV?
Comment by: ayesha
Tue., Nov. 6, 2012 at 11:48 pm EST
hi people i have had hiv for four years its been a real battle ..... but ive been on the same meds for the whole time ATRIPLA yes its a good med because when i first found out i had hiv my cd4 count was only 260 it was up to 500 in like four weeks i never got a virl load because the med work so fast that it was undertectbale but i feel tired all the time and i have stomach pain but hey im alive and yes it is very hard to take the meds all thye time but it becomes part of your life
Comment by: tonya
Mon., Oct. 15, 2012 at 12:48 pm EDT
listen I must admitt that after 20yrs living with this im not going out without a fight! hell at first i couldnt get the everyday taking meds, hiding them and not telling anybody about my status! today for the past 7yrs im an advocate for h.i.v people like myself, focus on getting the newly diagnose into care, or the ones that fell out of care for a while, im a peer counselor/ peer navigator at rvcc in mass, wouldnt have any job but working in this field has been the best life support and staying on track with my meds, as well as sitting on the board of afwm..aids foundation of western mass,we live long and promising lives, god bless you all.
Comment by: Jim
Wed., Nov. 21, 2012 at 10:16 am EST Tonya, YES! Never give up! Because of some past personal life threatening situations I vehemently believe that a person can endure much more than they could ever imagine! Also, when I feel hope gets dim for me, I try to look around....I can always find someone that has things worse! Not saying these statements are for everyone, just saying they have carried me through some very dark days in my life. Though not HIV, our son & partner are for 4 yrs. I also want to say that I amaze myself sometimes at how much I have evolved in the last 20+ yrs in relation to how judgemental, my prejudice, & being critical of others. Earlier I read & agree with Teri's post "i'm sure that there is someone out there who loves each of you. They may not tell you everyday but you are LOVED.Losing you would leave an empty crater in their lives." I hope I'm saying all this stuff right....
Comment by: Trina
Mon., Oct. 15, 2012 at 10:59 am EDT
I was undetected and feeling good about myself for over 14 years, until I lost my job 3 years ago. I have not been on my meds since then nor have I seen a dr. I cannot afford healthcare because I collect unemployment and it is above the income limit for medical benefits. Now, I am always depressed and sad because I have two boys that depend on me. I am slowly dying because I cannot get my medication. I was doing fine, enjoying my life with this disease, but now, I am not sure what my future holds for me and my two boys. I hope to live long enough to see my boys graduate from high school.
Comment by: tonya m.
Mon., Oct. 15, 2012 at 12:37 pm EDT you need to know that there are programs like a-dap, h-dap etc., depending on the state you live in you can get your meds for free, and no co-pays. due too you being on un-employment you should be good to go my friend....good luck.
Comment by: kv
Wed., Nov. 21, 2012 at 11:32 pm EST Your boys need you, and I am sure you know that. Please try agencies, as the other commenter suggested, I know that you are eligible for medication. Praying for you and your boys.
Comment by: Bella
Mon., Mar. 4, 2013 at 8:59 pm EST Hi Sweetie,
I do feel for your anxiety and fears about not seeing your boys grow up but honey there are programs out there to help you and HIV will not kill you that quickly even without the meds. BUT YOU ABSOLUTELY MUST; keep your diet healthy - this is including but not limited to - eating an entire rainbow of fruits and vegetables and red meat to help your red blood cells, dont use drugs or ALCOHOL and generally dont do things in your life that will affect youR immune system and by doing those things you will literally buy your body enought time to sort out with your head a way to get you out of bed and onto the computer to find a program to help you to be there for your boys well into your old age.... Here's praying that you do.... xoxoxoxo
Comment by: sg
Sat., Aug. 17, 2013 at 6:01 am EDT some drug companies will give medication with no charge, and/or there are several programs,such as the Ryan White Act. please check out these or other possible avenues - stay strong....
Comment by: mark
Mon., Oct. 1, 2012 at 2:16 pm EDT
Im from Guyana i tested positive for hiv since2001 back home we received free treatment but here it's very difficult to get your meds that's a shame because America is so much more develop it took me a while before i start receiving treatment again in doing much better it's so sad how difficult it is to stay alive in America especially hiv people stay focus and be strong
Comment by: Teri
Mon., Sep. 24, 2012 at 10:01 am EDT
I'm HIV negative but i'm reading through the comments because my best friend has had HIV for about 10 years. I honestly dont know her T-cells or viral load or even what meds she is taking but I can see the periodic changes in mood and other side effects. I just wanted to tell you all from the other side to hold on and have hope. It might be easier said than done on some days but i'm sure that there is someone out there who loves each of you as much as I love my bestfriend. They may not tell you everyday but you are LOVED. Please take the best care of yourselves. Losing you would leave an empty crater in their lives. If you arent sure who loves you this much consider it to be me, so pop those pills, get rest and exercise pretty please :-)
Comment by: tonya
Mon., Oct. 15, 2012 at 1:07 pm EDT wow terry! that is the most powerful statement ive heard in a long time, you just made my day! im possitive for many more years than your bestie, but never the less im about to grt married in july 2013 coming and my husband too be is my best supporter, as well as my family! he is negative as well and god has planted him as my defence for life, even so im trying to say ive gotta stay healthy and on my meds no matter what the cause, knowing that soon enough they will finally release the cure they have one just that they wanna continue to make pharmacy monie for the meds, keep ya head up all us specil people know that it can only get better.
Comment by: Jim
Wed., Nov. 21, 2012 at 10:23 am EST Yes Teri, WOW!
Comment by: sg
Sat., Aug. 17, 2013 at 6:07 am EDT teri - your statement is so awesome. thank you for that.
Comment by: Glenn
Sat., Sep. 22, 2012 at 8:34 am EDT
My diagnosis came in 1986. During most of the 27+ years I was able to keep up with work, the gym and social commitments.
However, I started to get severe bone problems and have difficulty ambulating. My mind is slowly unraveling and I have a good dose of depression and anxiety. My body feels much older than it should be. I'm certain the medications are my primary problem and yes, it is difficult to be 100% compliant.
Going strong here with a 500 CD4 and no viral load. I'm very grateful to have made it thus far in my life. Back in the day, we were given 6 months to live. Oh the old scary days!!
To my fellow HIV positive friends, I feel horrible for those of you that have difficulty getting your medicines. It angers me to no end that anyone in America goes without when we give poor nations billions of our tax dollars for the same problem. Charity begins at home in my book. I just can't believe this happens here in the U.S.!
My thoughts go out to all of you. A good attitude will add years to your life. Laughter is the best medicine.
Comment by: Rayford
Fri., Sep. 21, 2012 at 8:38 am EDT
I have been HIV+ since 1988 and have lived a very healthy life. My t-cells are over 900 and viral load undetectable. I have been on Atripla for over 10 years and still healthy to this day. The one thing I try to do is listen to my body. I try to eat right and make sure I rest when I need to. My advice is to keep a positive thoughts. HIV does not control me I control it. It is just a part of me. I was in a 12 year relationship with someone who is HIV- and we were always safe. Just because someone has HIV does not mean that need to be alone. I work 40 hours a week and attend school at the same time. I have a house and a nice vehicle. Yes I am single now of my choice. I live by myself and have been for the last 9 years. Please do not let the HIV define you and make sure you live life to the fullest. Find happiness in what you do and do not feel sorry for yourself and do not let anyone make you feel guilty about it. Be who you are and take care of yourself.
Comment by: Grillo
Fri., Sep. 21, 2012 at 1:26 pm EDT Thanks for such beautiful comment. I am in a situation of feeling dirty an unworthy. I have been trying to be positive but it's still difficult. I was diagnosing HIV positive last year and I am still feeling a kind of moral pain. Sometimes I feel angry with myself. However after reading you experience of dealing with HIV I can only say thank you for such courage and hope. Now I tell you that I will try my entire best o improve, thank you very much.
Comment by: Imarose
Sun., Oct. 28, 2012 at 11:45 pm EDT I really enjoyed reading your comments. I too have hiv and its a little bit of a struggle for me because of feeling guilty for allowing it to happen. I found out I was positive in 2006. I am married and have remained with my husband, but it has been a long and bumpy road. Sometimes I feel that its would have been better to have ended the marriage because of living with the guilt. I have three children who are grown, and have told them. I have three grandchildren and they are the joy of my life! I have days when I'm terribly depressed, then there are very good days and times. The hardest though is getting my husband to change his way way of thinking and maybe getting more educated about having a healthy and fulfilling relationship with a positive partner. He is very old fashioned and says that he has forgiven me, but every so often we have to discuss how we came to this place. Our marriage was not in a good place at the time that I contracted this virus and there has always been a problem with infidelity on his part. He would never admit to his part in this (and I realize it is totally my fault), but since he is healthy and does not have the virus - there is no evidence of his wrongdoings in the marriage. I wanted to keep the family together, but I now realize that sometimes you just have to remove yourself from a situation in order to be happy and not be constantly reminded of your short-comings. My health is very good, but I'm so very lonely. I just want to be held, I need my best friend, the closeness that marriage or a relationship brings. I think constantly about ending the marriage and to just get out of his way so he can live his life. My children are wonderful, they want me happy, but this is my problem. But again, I was happy to read your post.
Comment by: Robin
(Kenai Peninsula, Alaska)
Mon., Jun. 3, 2013 at 8:48 pm EDT I found having a pet (dog) gives me all the companionship that I need when alone at home. My family gives me much emotional support and love. They tell me that they want me around for many more years. My dogs fill in the gap when I am home alone!
Comment by: sg
Sat., Aug. 17, 2013 at 6:08 am EDT Very inspiring!
Comment by: Ray
Thu., Sep. 20, 2012 at 8:23 am EDT
I've been HIV+ since 1998. Currently on Reyataz, Truvada and one other. My viral load is undetectable and a CD4 count of about 1500. The only side effect I have is with the redistribution of fat. Long before my diagnosis, I said that if I were to become HIV+, I was not going to be living with HIV...HIV was going to be living with ME! Keep yourself in the right frame of mind
Comment by: Atripla Fan
Sun., Sep. 16, 2012 at 11:36 am EDT
My physician prescribed once-a-day ATRIPLA from Bristol-Myers Squibb and I consider it fantastic! He joked that wild dreams might be experienced based on the last thing watched before bed; and if that occured, make sure it was porn! Fortunately for me, no wild dreams, but fat loss did occur in all the "right" places. After my body adjusted to the meds, the weight came back to acceptable levels, the CD4 went up and the load count went toward undetectable. Bristol-Myers Squibb has a patient assistance program when ADAP (or insurance) is unavailable and the $2500/month meds are provided free in two days from your local pharmacy (up to a year). Other than some ocassional numbness in my feet, I am thankful for no other debilitating side effects, Atripla, and my physician's recommendation.
Comment by: Hal
Wed., Dec. 19, 2012 at 8:50 pm EST The numbness in the feet can be a possible sign of neurothopy (nerve damage). I contracted neurothopy by the HIV virus. Since then it has spread to my hands a bit, by having the virus make sure you file for Medicare and get everything you can from the government after all they made us this way.
I'm legally disabled by the state and I'm just 40 yrs. old, married with kids and living my life positively with zero stress, no side-effects and I worry about nothing life throws my way. I humbly advise all of you to do the same. Take your meds to survive for your loved ones and all those that support you and never ostracized you because of this virus.
Comment by: Logan
Sat., Sep. 15, 2012 at 11:03 am EDT
I found out that I was hiv positive in November of 2003. I felt like it was a death sentence as I really wasn't up to date on the new meds.
I have only told one person and find this to be the hardest part of this sickness--the stereotype and comments of the uneducated. I live in a place where hiv/aids is not understood and there is little compassion.
I am taking atripla and my numbers are good at the present time. I am depressed most of the time and have night sweats and bizarre dreams. Also if I eat late and then take the meds I become very dizzy and feel terrible. Would like to know if other people experience the same? Thanks for this site--it helps to share information with others.
Comment by: Ed
Thu., Sep. 20, 2012 at 2:46 am EDT It is recommended that you take Atripla on an empty stomach. So, don't eat anything 2 or 3 hrs before you are supposed to take your meds. That may help with the dizzy and terrible feelings.
Comment by: Atripla Fan
Sun., Sep. 23, 2012 at 1:19 pm EDT Logan, I share some of your pain. Didn't understand how to take the med on an empty stomach before bed...hello, what? Life is a series of adjustments, take it on an empty stomach like Ed/Pittsburg suggested, BEFORE DINNER (and it might alleviate the undesirable dizzyness/dreams side effects). Come on man, you CAN do it -- but, you CANNOT unring the bell regarding our HIV status -- and considering the number of gay/lesbian/straight friends in my age group of 50+ who are taking 10-15 pills daily for a host a ailments from high blood pressure and diabetes to cancer and depression, ATRIPLA is a cakewalk. My doc said some days would be harder than others mentally, and I found that to be true, but you have to get up and keep on stepping!!! Remember, NOBODY gets outta here alive.
Comment by: jasmine
Tue., Oct. 9, 2012 at 2:53 pm EDT Daer Logan I hope you get better ,I have a male friend who has HIV and we go out and I never think he is different than me,I am a female,it is not compassion is friendship ,you are right we need more compassion in this world to accept our friends the way they are! I will be praying for you ....
Comment by: Michael
Wed., Sep. 12, 2012 at 1:49 pm EDT
I can honestly say that I wish I never started taking my meds. Trizivir. I went from a good-natured, happy and positive spirited person with a well-built athletic body to someone who looks and feels, like I've already died. I have so little body fat that it hurts to sit or sleep and I suffer cuts and abrasions everytime I touch something hard-surfaced. My body looks like the diagrams of the body without skin in biology class. When it's hot, I burn up, when it's cold, I freeze. I have NO insulation left. I have thrown up many times EVERY single day since I started my regimen. I have been dizzy/light-headed EVERY day. I have been depressed to the degree that I cry at the drop of a hat, prefer dark rooms to people, have alienated myself from most friendships/family and have considered suicide atleast weekly. My doctor has never addressed my body changes but tries to reinforce that I look 'fit'. I don't look fit. lol. If I had it to do allover again, I would prefer to live out my life, looking and feeling--both physically and emotionally, like myself rather than this disgusting ghost of whom I used to be...I would never have started this regimen of drugs. Longer life span to me in this condition is a curse as I see it. I have diligently taken my meds and don't miss a dose, however, I wish I had missed every single dose. I'd definitely choose a shorter life with quality, than a longer life without, living in this prison I call a body. I take ownership of my situation but, I would definitely choose NOT to begin taking meds at all...of course, my ID doc COULD'VE warned me but, he didn't & I didn't know to ask. ASK YOUR ID(infectious disease)Doc what you might encounter, rare or not. ASK!
Comment by: claire
Mon., Sep. 17, 2012 at 8:11 am EDT I couldnt agree with you more. I thought I was going crazy but reading this for some reason helps me understand.... Thank you
Comment by: john
Tue., Oct. 16, 2012 at 11:48 am EDT michael..it is obvious that your body cannot tolerate this med Trizivir. Everything you've stated exemplifies that fact. There are so many combos available and its time to make a change. Get another ID doctor. It seems that your body has been telling you this for months. You're manically depressed and sick to your stomach daily. Make a change. I've been poz 25 yrs, my cd4 is 1184. I've taken numerous combos over the years and you have so many available. You're showing a severe reaction to this med. Talk rationally to a new doctor and to a social worker about this situation and do it quickly. You should be celebrating your life. It is not a curse. I started from the beginning of the HIV epidemic and have lived through the history of every med. Please research a new combo. This is your first one and it is not working with your body. You'll detox once you come off of Trizivir. Your dr. will do a genotyping of the virus you have and it'll tell you what drug combos are avail. People do it every day. You'll feel better about your health and your well-being. Give yourself an early xmas present and do it now.
Comment by: Richard
Thu., Oct. 18, 2012 at 6:14 pm EDT Michael, I feel the same as you. I am always depressed, have anxiety, can't sleep and have bone problems, high blood pressure and now a failing heart. I have stopped taking my meds. I have had enough and will live out my days as in the best quality I can and I am not supporting these frug companies or Drs. any longer. It's been a pleasure knowing the people of the earth I've known but It's time for me to depart. I tip my hat to you all and thanks for the good times. Peace out and love to all.
Comment by: Darlene
Fri., Dec. 14, 2012 at 12:40 pm EST I read your comment with laughter (you are funny) and sympathy. I sympathize because I lost a sister to AIDS in 2010. I know how she suffered some if not all of the symptoms you are describing. I wish there was something I could do. I hope you get to feeling better. is there not another medication that might work? Why are you stuck with something that's obviously horrible for you.
Comment by: Bobby John
(New York city)
Sun., Jan. 20, 2013 at 2:12 pm EST Couldn't have said it better. I feel the same regarding quality of life. I haven't started meds yet but I find it difficult enough just dealing with the urgency of this disease. I keep myself away from everyone I love because I don't want to have to reintroduce myself to the world as some poisoned monster. Id rather everyone just remember me the way I was prior to my diagnosis.
Its been about 3 months since my diagnosis but something tells me I contracted long ago. I find myself left with a mystery of a life that almost had purpose. I feel like I will never know how this happened to me. And that is a painful reality for me. I need closure and spiritual healing. I don't think I can carry on not knowing when I went wrong.
Anyway, I am terrified to start medication because I have had dependency issues with pain killers/mood stabilizers and I know how vicious a body can function when constantly medicated.
Hoping things get better because I can't see the sense in living this way.
Comment by: Jeff
Sat., Sep. 8, 2012 at 10:40 pm EDT
I've been positve for ten years and did not start a treatment
plan until just over six months ago and since then my physiczl and mental wellbeing has fallen apart at the seams.
I've always heard of the importance of maintaining your medicinal routines, but it seems like now I'm killing myself by trying to stay healthy. It's hard, period. And its made even worse when a person has neither a partner,family member,or physician that either understands what I'm going through, or seems to care enough to correct what is obviously wrong with the medication I've been taking. Its my cross to bear, but at times I have hoped for a set of understanding shoulders other than my own to lean on at the end of the day particularly now where I feel worse then I did before I even started taking anything.
Comment by: John
(Los Angeles, CA)
Fri., Sep. 14, 2012 at 6:29 am EDT It takes time to get used to the regimen. Join a support group and take the meds for a few months straight and see how your numbers are. You can then treat yourself and skip for a few days depending on your regimen. Trust me, you'll get used to it.
Comment by: constance
Thu., Aug. 30, 2012 at 5:11 pm EDT
Hello this for magic to read i pray there are alots of people dont know how to reached the goals of getting there load untectedable i would like to patten a machine that count the blood and viral load i lived in the hood al my life iwant every one to be able to count down at at once the machine is like low blood suger count diabetes machines give people there count i need guidence with this im sure going to try that why sometime i dont take my med i need to see it working and having the pills to be reduce i have a fear of organ lost
my son have dreams of playing but sometimes im to weak to go to the games i want to believe in his dream Unity health care in d.c general is where i go i hope for a response so i can have hope again this machine is for my daughter who was just a new count for the virus i feel regret i need in powerment to see some real people who understand.
Comment by: MoM2012
Sun., Aug. 26, 2012 at 1:49 pm EDT
My teen son was just diagnosed less than a week ago Ive taking it very hard he got it through sex with teen girls I feel like a failure because I though he was using condoms and thought I taught him the dangers of STD Ive taking two weeks off work because this has hi tme hard and I ve lost 6 piunds with stress my father died of AIDs my aunt and uncvle back in the late 80's I wnat my son to live a long happy life and I wanted grandkids and no will never have them with my first born sonI cry everyday since I found out and look at his baby pics how could this be I pray for a cure and pray for everyone with this its so scary and he doesnt want anyone to now so it will be just him and I facing this battle and I will be their and take care of him as long as I am breathinI want to know how has people parents dealt with this Im so depressed and and I feel helpless that my baby has gotten this he was told over phone cuz he missed his doctors appointment and was alone Im just so stressed and want to turn back the clock in time to save him are they getting even close to a cure and hes 19 how long will he live he just tested negative in march so he just got this within last 6 months Im beyond shocked and heart broken I feel so sorry for this disease why why why does it hurt and affect so many people and families where and when is theie a cure no cure for this or cancer whyyy
Comment by: John
(Los Angeles, CA)
Fri., Sep. 14, 2012 at 6:34 am EDT Don't lose hope. Many people live with HIV and have children. This is a wake up call. Please find him support, a church a group of guys, etc. Help is out there. If he treats he can live to be 70. Some men who have HIV have biological children through a special process of treating the semen. It's expensive....but hope is something you should not give up on. Dreams can still come true formyour son.
Comment by: Kat
Sun., Oct. 7, 2012 at 8:12 pm EDT Hi my partner was diagnosed 1 year ago I am clear but I know what your feeling here in Australia we have no support groups at all unless you of the gay community nothing for heterosexual partners where one is positive the other not so I will be there for you if you need a Freind there is a lot research going on stem kind so here both of pray it will happen
This HIV affects all those around it who care no is there to help us in our heart turmoil so I pray for you and yours
Comment by: Karebear_19
(Kansas City, MO)
Fri., Nov. 2, 2012 at 1:43 pm EDT I was 18 when I found out about my status. I'm glad that I know becasue knowing is half the battle. i was told face to face with my mom right beside me. Now In high school i donated blood and everything and I always got tested and everything always came back negative, I even saved 3 lives with my blood. It's not the end of the world but the first thing you want to do is go with him to meeting so that you to can cane become aware of this is and you both can live better lives. My mother is very sad at times but to show her that i'm going to be fine last year I made a life changin desicion to call that saved my life. In feburary 2012 i got a case manger and TOGETHER we worked and in march I had my first doctors app. that I had in a year. After my labs i found out that I only had 11 Tcells, which was very scary because by then i was in college and doing everything that I wasn't supposed to do. Now I 've been on my medicine and I'm great I have 136 Tcells which is still low but with the help of my mom I have came through. If your son takes the first step of accepting this then he will definetly live a long Healthy life and you will have beautiful grandchildern. It's really up to your son wether he wants to let HIV run his life , or if HE wants to run his life. After I accepted this I haven't stopped doing anything that I want to do I'm studying to be an Infectious Disease Doctor because this just gave me fule to start this fire. Once your son accepts then you have to accept because you can't live in fear. I'm 20 years old now and yes i have a long fight but I have a close nitch of people around me who help me in this fight. and right now that is what your son needs. he needs you to be strong!!
One Love, Karebear_19
Comment by: Karebear_19
(Kansas City, MO)
Fri., Nov. 2, 2012 at 1:51 pm EDT Also, Your son is truly blessed that he found out. and with all the new medicines out now HIV isn't considerd deadly anymore it's now chronic. Please pray and keep god first (will keep you sane and keep the devil form being so busy)!
Comment by: Ms Sheila
Fri., Aug. 24, 2012 at 4:16 pm EDT
My parents that I live with help remind me to take my meds everyday. And without my parents help,I probably forget to take them. I do try hard to stay healthy and stay on my meds everyday. I thank my parents for being there for me. They have been there for me since the day I was diagnosed with HIV-Hep C back in 2006.They also go with me to see the HIV Specialist . When ever I have an appointment.
Comment by: Rhiannon
Sat., Aug. 4, 2012 at 1:35 pm EDT
Taking HIV meds does NOT keep one healthy, It only slows the progress. If these meds kept me healthy I would not be in the condition I am in NOW.
Comment by: tally r.
Mon., Sep. 10, 2012 at 8:59 pm EDT please dont say that because people will be discouraged an believe me they dont need to be!!!!
Comment by: Nonhlakanipho Makeka
(Durban - South Africa)
Thu., Jun. 21, 2012 at 1:41 am EDT
I think disclosure is also the issue for some people who are not adhering well to their medication. If your family or partner does not know your HIV status its becomes difficult to take your HIV medication infront of them. You will wait until there is no one in the room or in the house before taking your meds. So that can lead to one forgetting totally to take medication or delay the time for medication.
Comment by: john
(Los Angeles, CA)
Fri., Sep. 14, 2012 at 6:36 am EDT Morally, you should tell your partner.
Comment by: Jodi D
Tue., Feb. 19, 2013 at 10:29 am EST Legally as well. They could potentially sue you, or press charges against you in some states. I watched an episode of 20/20 once. This guy was seeing 7 women at once, getting new ones often. He had HIV, and wanted to infect as many women as possible because he hated women because a woman infected him. The police didn't step in right away, so these women that made a group against him took shifts watching his house. They would go up to the women walking out of his house and tell them about him having HIV. They would either not believe them, or say thank you I will get myself tested.
Later, he was charged with assault with a deadly weapon. Then they charged him with attempting to infect others with a deadly virus. He went to jail for years.
Comment by: Robert
Wed., Jun. 20, 2012 at 6:45 pm EDT
My insurance company - United Health Care - mandates the use of a mail order pharmacy. It often requires at least an hour on the phone to order and a few days to receive. The will not automatically ship or allow internet orders. It's a freakin disaster to deal with this which appears to be nothing but a barrier to accessing care.
Comment by: James
Sat., Jul. 7, 2012 at 6:53 pm EDT I also have UHC and go thru the same process monthly. Although I agree having to reorder my med every month I've not been on the phone with them for more than 5 min and they initiate a call to me when my prescription is about to run out and usually ships out next day overnight. They also remind me how important adherence is. I don't mind any of it to relieved of having to pay the extremely high retail price for this med.
Comment by: REAP
Mon., Jun. 18, 2012 at 3:53 pm EDT
I’m looking for some advice about meds. I am 60 years old and have been Positive for 30 years now. I have Never been sick from this and have Never taken any HIV meds. Also, I have been tested for the CCR5-D32I mutant gene that gives immunity and I do NOT have this immune gene. My HIV virus has been DNA sequenced and it is one of the early varieties that killed huge numbers of people and the good news is that my bug is Not Resistant to any drugs, old or new. I have EXCELLENT Healthcare that pays all bills including pharmacy. Over time my T cells have been slowly declining. Last November my count for CELLS.CD4/CELLS.CD8 was low, at 0.16. However, over the last 10 years I have been in the best health of my life. I have not gotten sick with anything, no colds, infections, nothing for over 10 years. My Docs are PhDs and MDs, affiliated with a major University, who work on and produce some of the best research on HIV and other deadly viruses. My Docs are recommending that I go on the new HIV drugs because they say with the slow, but continual CD4 drop, it’s just a matter of time before I get sick with something serious. They fear that when this happens my CD4 will be so low that it might be very difficult or impossible to overcome what hits me. For my part, I have refused HIV drugs because I am somewhat concerned with taking meds that have Side Effects for the rest of my life. But Mostly because I believe that my immune system is somewhat different than the Standard Model in that it keeps me safe from HIV and other diseases by itself. I would like my immune system to be researched further to find out what it is that keeps me so healthy in the hope that this might improve the understanding of the immune system and ways for combating not only HIV, but other diseases as well. My fear is that if I take the HIV meds they will mask whatever is really keeping me healthy and useful information will be lost. I would appreciate some well informed advice. THANKS!!
Comment by: Cecie
Fri., Aug. 24, 2012 at 10:55 am EDT I am interested to know which doctors attend to you. I have been on HIV medications since October 2011. But since January I have been having problems with my Gastrointestinal digestive/bowel problems and my doctor seem not to know what the problem is. I would like to travel to the US but does not know where I can find good doctors for my condition. Any information, I will appreciate it. Thanks.
Comment by: Sheila
Fri., Aug. 24, 2012 at 4:15 pm EDT I had always thought that when someone is HIV/AIDS had to be on medication to get better. I felt the same way about not taking HIV meds due to the side effects. I had for over 7 yrs now. Plus I am Hep C .Longer then HIV and never taken the treatment for hep c because of it's side effects. Because there are side effects when you go on the treatment for Hep C. So I didn't do it. But as for HIV I am now on the treatment. I have been on the meds now for only 4 months now . And I don't have any side effects from my meds. I was told some people do and some don't. Like I said I was afraid at first. Until I tried the meds. And now I am doing great and I even feel a lot better being on meds then going without them. And if you do decide to try going on the meds ask your doctor questions about the medication before you start them. To see if there is any side effects. Just to be sure for yourself. Take Care !!!
Comment by: LOVIN1
Fri., Aug. 24, 2012 at 7:41 pm EDT Reap you look as if you are taking good care of yourself. Keep it up I lost my brother to this.
Comment by: John
(Los Angeles, CA)
Fri., Sep. 14, 2012 at 6:41 am EDT Cecie, that's common. Eat yogurt. also, has your liver function changed? if your cholesterol and lipids are high which is common, you need to take an anti cholesterol drug too. Try eating basics like rice and then slowly eating meat, etc again.
Comment by: Jason
Mon., Jun. 18, 2012 at 3:48 pm EDT
I recently tested positive and was found to have a very low CD4 count. I was immediately started on HAART therapy. I have moments that I get down thinking about how I will have to take these medications for the rest of my life. Then I think to myself how so many other health conditions require medication for life as well. It all comes down to choice...life or death. I am choosing life and I intend to made it a great one. I thank God for these medications.
Comment by: erick
Thu., Aug. 9, 2012 at 9:21 am EDT I know wat u going thru. i been diagnosed for a year n i been having lots if issues. sometimes i wanted to give up. im currently attending thonas street clinic.
Comment by: bryan
Sun., Aug. 19, 2012 at 1:38 am EDT Jason, I can totally relate to your comment. I was recently diagnosed with full blown Aids last year. My tcell count was 168 and viral load was very high. Started me on Atripla and became undetectable with tcell count now 584. Just couple weeks ago, discovered I am now resistant to the Atripla and now detectable... I dread taking my medications every night as it is a constant reminder I have Aids. Now, doctors are testing my resistence and although Atripla is now no longer working, doctors still want me to take it until I get changed to another med. My mood changes from one moment to the next. Within less than a year I went from detectable to undetectable back to detectable.... Thanks for sharing your comment!
Comment by: garrison
Fri., Aug. 31, 2012 at 2:44 pm EDT jason,hang tough buddy,I've been positive for 15 years,undectable and cd4 of 600+. take your meds and keep a positive attitude,i have a friend who has been + for 26 years,hes doing good. God bless you my comrade,you'll be in my prayers.
Comment by: Bubba
Mon., Jun. 4, 2012 at 9:01 pm EDT
I as others hate to take my meds, mostly because of my bi-polar diagnosis. There's just days where I don't care if I live or die mostly die. I tell my dr's that I'm going to stop taking them so I can die faster but they said it doesn't work that way and that would be a painful death. I may take my meds 75% of the time and I just don't understand how my t-cells are over 1600 and this was just in April (2012). I know my depression is the cause of not taking my meds the other is I'm just sick and tired of taking HIV & depression medications. It might sound selfish to some people who are worse off than me but I don't care, I'm talking about me and my life. I know it sounds selfish and I am sorry to those who are alot sicker than me.
Comment by: Bob Mitchell
Wed., Jun. 20, 2012 at 3:28 pm EDT You know, I can certainly understand being "sick and tired". And, I understand depression... but aren't we lucky that we have medicines that are effective in helping us with depression and HIV? My advice to you... go for walks when you feel depressed. Long walks allow me to work through issues that I have.. get's me out of the apartment, and, more importantly, just get's me out of the house. My t-cell count has gone down significantly after going through radiation treatment for prostate cancer. Yet, I still have to be thankful that treatment was available for me, that I had great insurance, and that I have friends and a partner who does what they can to make it all worth living. I hope that you can look at the "bigger" picture, and realize having a t-cell count as high as yours is remarkable!
Comment by: WHITE
Wed., Jun. 20, 2012 at 5:16 pm EDT I BEEN TAKING MNED FOR 12 YEARS AND I TAKE THEM EVERYDAY I GET TRIED BUT MY FM GIVES ME HOPE
Comment by: Daniel
Sat., Jun. 2, 2012 at 9:56 am EDT
I find it sad that money issues is the second most common listen reason here for people missing meds. Although not an issue for Australians luckily (thx to universal state funded health care) I can definitely relate to "Ooops, I forgot!" and depression as reasons for missing doses.
Comment by: James
(los Angeles )
Wed., May. 30, 2012 at 2:51 pm EDT
I tested positive in December of 2011. Started taking atripla in January 2012. At times I missed a dose I've marked a calander. Set an alarm. But still forget to take it or if I've taken it. Anyone else having hot flashes, sweating at night?
Comment by: Wesman
Mon., Jun. 11, 2012 at 8:18 pm EDT James, welcome to the world of HIV. The night sweats are from the virus and come with the territory. Try sleeping under lighter, thinner bedding, and don't freak out. Everthing is going to be alright (I've been positive for almost 25 years).
Comment by: Sugar
Mon., Jun. 11, 2012 at 10:11 pm EDT Hi James tested positive in Aug 2004. Started taking Atripla about 3 or 4 years ago. I have nightmares, sweats and forgetfulness at times. I have missed a dose well almost a weeks worth due to the mail order med place and Ups delivery. Hot flashes yes about an hour after taking my med thats my own way of knowing i took it. I try to take it every nite by 9pm with my multi vitamin sometimes im late but i still take it. I think it makes me sleepy not as bad now it use to make me dizzy all side effects that were in the pamphlet that came with the meds very costly i think if my insurance didnt cover it I might have waited to take meds even longer went to doc today doing great next check up in Sept upset im sick but believe i will live to see a cure
Comment by: Martha
Thu., Jun. 21, 2012 at 1:21 pm EDT Hi James,
I found that using a weekly pillbox where you can put all of your pills in the box for a week at a time works alot better than grabbing them from the bottles. You have the visual reminder to take your meds and also have the visual assurance that you really did take them. I know that if I had to go on my memory for whether or not I took my pills I would be endlessly second guessing myself. Best of luck to you!
Comment by: ben
Wed., May. 30, 2012 at 6:16 am EDT
prayers of faith heals hiv. God heals peoples from hiv, TRY IT. God bless u.
Comment by: Wesman
Mon., Jun. 11, 2012 at 8:19 pm EDT No it/he doesn't.
Comment by: Brian
Wed., Jun. 20, 2012 at 4:16 pm EDT Extraordinary claims require extraordinary
I'd be happy to look at even ordinary evidence, but I have never seen any.
Comment by: Andy
Mon., Sep. 24, 2012 at 9:31 am EDT Ignorance, just plain old ignorance. There has been no evidence indicating this. Please do not sell your lies, we're fully stocked with rediculousness here.
Comment by: Nick
Tue., May. 29, 2012 at 12:48 pm EDT
I hate HIV medication and i still take it, but it ruin my life because it cost so much the medication every month and the state will not let me work because i feel 99% very good and what about my cost of living to pay the bills, state don't care and my social security said i can work and make $1,010 a month but the state say no i can only make $2,500 year on a partime and i am so angry and that call unfair because of the big Pharma cost and i pray to god that the greedy riches will be rotton to hell because doctor make me feel better and i follow thier rule to take medication on time everyday, and i hope the CURE will be on a way in the next couples years and i know they already have the CURE but they kept quiet and closed the case because of the "big pharma" can go out of business from the HIV drugs and i am so angry they are playing my body for DRUGS MONEY that all they do and i feel sorry for 33 millions had suffer HIV/AIDS you all will be taken care by GOD and GOD love you all AMEN!
Comment by: toni
Wed., May. 30, 2012 at 5:32 pm EDT i am very sorry to hear this, my heart and prayers go out to you...
Comment by: Reggie
Sun., Jul. 22, 2012 at 10:39 pm EDT I understand your situation. My co-pay has jumped from $20 to 1, 977.00. I can't afford it. I don't know what to do & I haven't taken them since March. I've replied to many & no one will help.
Comment by: John
(Los Angeles, ca)
Fri., Sep. 14, 2012 at 6:52 am EDT Consider going to new York for treatment
Comment by: Karebear_19
(Kansas City, MO)
Fri., Nov. 2, 2012 at 2:01 pm EDT Have any of you guys tried ADAP? They help with everything HIV related and yes you can still have your own Insurance but this will help you. Reggie i know that i'm only 20 but don't give up please go and see where you can get help. i'm praying for you all
Comment by: alexis
Mon., Mar. 11, 2013 at 1:18 pm EDT well i pray for you nick an dall the others would you like talk sometimes
Comment by: mk
Tue., May. 29, 2012 at 11:42 am EDT
Have been on my meds for five years and have been doing well, yes we all forget at times we are all nt perfect, but thats where the we are teated in this world. Our body may change, and feel fat. The challanges keeping your head up and moving on in life. We all came into this world perfect and we are not all going out PERFECT. We are going to die w something before we leave this world. That's were w are tested stay strong. I have read all of your sataement thank you I don't feel sooo alone. Let's keep up the fight.
Comment by: Whatdoesntkillyou
Mon., May. 28, 2012 at 2:30 am EDT
I am from texas and HIV positive for four years. Started medication back in 2010. No problem getting the medication for free. I never been sick. I exercise regularly, weight lifting and cardio. I feel great than ever. I have to take vitamin D and calcium to counteract the side effect on my bone. I like to hear the song "...what does't kill you makes you stronger" when I exercise.
And I never missed my pills, I do not want to go through drug resistance problem. Always after dinner and breakfast. One more thing, I even completed my masters degree and looking for a job. So the bottom line, we have no choice except taking the pills everyday. Accept it and make it your daily routine. Live with hope!
Comment by: toni
Wed., May. 30, 2012 at 5:35 pm EDT im glad to hear that you didnt let a mistake bring you down, you keep enjoying your life and always think positive... im toni from st. louis
Comment by: jag
Wed., Jun. 6, 2012 at 8:00 pm EDT Toni, I would be curious to know what mistake you're referring to. It's very unfortunate people have that frame of mind.
Comment by: Dee
(New York, NY)
Sat., Jun. 16, 2012 at 9:32 pm EDT Reading through the posts, the word "mistake" stopped me in my tracks. It always amazes me that people still paint all those with HIV with one brush. I got teased all my life for being a good girl. If I made any mistake it was marrying someone with no regard for others and a boatload of secrets, but a lot of women make that "mistake" and don't end up with HIV--I was not so lucky and have to suffer through getting painted with that brush that you, Toni, and too many other wield.
Comment by: GLM
Fri., Sep. 14, 2012 at 6:00 pm EDT Just wanted to comment that I'm with Dee on the fact that the work "mistake" popped up in these comments. Although I don't have this horrible disease, I definately don't look at it at someone's "mistake"! I could go on and on but....good for you whatdoesntkillyou! Keep up the good work. You may out live us all!!
Comment by: Kat
Sun., Oct. 7, 2012 at 8:27 pm EDT Mistake. Well what about the 3 percent who just get it from helping someone say in accident or blood transfusion it is not just std can be contracted other ways as well so attending and accident saving a life and the helpe gets HIV you call a mistake
So this is for those people like my partner you all deserve a medal for at least helping and caring. Not to victimised or look down upon my love to all of you
Comment by: Chris
(New Orleans, LA)
Mon., May. 14, 2012 at 5:53 pm EDT
My issue is copays. I have to pay more now than ever before because my employer is asking all of us to take on more financial responsibility for our medical and pharmacy benefits. I'm grateful for insurance but it's becoming more expensive and taking these meds is costly. I get samples of Kaletra and use copay cards for the other drug. But recently the clinic I go to will not allow samples anymore. I can't understand why. But it seems to me that if clinics really wanted to help people, they should allow free resources like the samples. All they are doing is hurting my ability to afford the meds. And I don't want to go to a public clinic around here. I keep hearing about waiting lists, no samples there either and simply not a place I want to go for my care. Allow the samples. They help me and could help others too. Wish I had known about ithem sooner. I would've chosen samples over less pills to save money.
Comment by: John
(San Diego, California, USA)
Fri., Apr. 13, 2012 at 3:48 pm EDT
A little cheese with that whine? I forget to take my meds because I forget. I am distracted at bed time or breakfast and just get to sleep or out the door before I remember to take them. Because they are prepackaged by my pharmacy, I can see if I missed a.m. or p.m. doses.
I think there is a myth of adherence that we have to take each dose on time. The dosing is a guess-timate for what may work. I don't think missing two or three doses a week will probably make a difference. Why stress over it?
But reading some of the comments above, I doubt if anyone who died of AIDS would really be so prissy about the paperwork, the body changes or the side effects if given those inconveniences rather than a painful, awful death from this disease.
Yes, we have a lot of work to do. Many of the programs we rely on are being cut. In many parts of the U.S. people can't even get AIDS therapy. Kids still think they are immune to everything. Let's work on those.
Comment by: George
Mon., Apr. 9, 2012 at 8:03 am EDT
I have been HIV+ going on 22 years, and I was never on medications until after 4 years and that was briefly when I got AZT whilst serving in the Jamaica Defence Force (JDF)I moved to Amsterdam early 1999,but it took me another 2 years to ask for help, and I got it right away from the (AMC)I tried taking my meds on time for the first year or so, but after a while I just could not keep up with the strict regime, eventually I started taking them at various hours, I had a nervous breakdown in 2002 where I did not take them for days,shortly after I moved to another part of the country, but I just did not keep up with the strict timing, I moved again to my present location Rotterdam, where the worst thing happend in 2004, I developed Stephen Johnson's Syndrome from a brand new cocktail I started 2 weeks earlier, after spending a month in a coma and returning home not recognisable to myself or anyone else, I went back to the AMS in Amsterdam and was told that 1 tablet from the new cocktail was the Culprit, I started on new meds shortly after and this time no major problems, but often my time has changed, it varies from 12 hours to an hour and it seems that it does not make a difference, when I travel to other countries, sometimes I forget to adjust to their the time zones,bottom line I am very lucky gay man to be alive @ 42 years old and HIV+ 22 years next month.
Comment by: Billy Bob
Mon., Apr. 30, 2012 at 10:58 pm EDT My friend I sincerely hope that you continue taking your meds and know that there are people all over the world who think the same way. As a U.S. compassionate conservative, I only wish that every one of our citizens had access to medicine their life depended on. It is not asking much, but to many it is asking everything.
Comment by: rick
Wed., Jun. 20, 2012 at 8:31 pm EDT Thanks, by the way which meds are u taking now. I find that sharing meds info and side effects helps a lot. best wishes to u.
Comment by: Dan I
Tue., Apr. 3, 2012 at 11:13 am EDT
I have been HIV + for 10 years and just recently my partner lost his job and our health insurance. I am scared to death that I will not be able to afford to continue taking my medication(Atripla) I hear it is over 1400.00 a month! Nowadays most of the health plans want you to order a three month supply via e-mail express service. $3200 every three months for meds is definately something that I can not afford. I do not even make that much! I have enrolled in my companies health plan but have no idea what percentage of coverage the give for my meds. Really scared that I will develop complications if I have to stop taking my meds. I can not even go to the doctor to get his advice because I still have not recieved my Intro-Insurance packet yet. All of this is causing me a great deal of stress and fatigue. I have been completely off my meds for about 3 weeks now, and I can already feel the strain it is having on my digestive system. Wake up in the middle of the night vomitting, feel listless most of the time, and major migrane-headaches. Now i have been missing work and fear that I will be fired for taking so much time off. Which of course will result in NO INSURANCE! At my wits end, do not know what to do. Anyone have any advice?
Comment by: vivian
Tue., Apr. 10, 2012 at 4:43 am EDT i believe that there has not been any effect on me when i do miss them is because i usually always take them every day at the same time. so accidents happen but with prayer and gods grace i have been doing great. ~~~ Bl ack White planet. C0- M ~~~itâ€™s where for men and women looking for interracial'ship for a fabulous lifestyle
Itâ€™s a nice place for black white sing'les, to interact with each otherâ€¦no bounds or extremes in front of true love.
I am so very, very thankful for being alive and having these medications to take. I recognize and understand the challenges, but I am alive!!! What an incredible homage to those we've loved, lost and love. I truly am grateful for these profound medications and I genuinely hope that someday a cure is discovered.
Comment by: avesraggiana
(San Diego CA)
Sat., May. 12, 2012 at 9:51 am EDT If Iâ€™m not mistaken the Ryan White Act provides some sort of protection for all HIV/AIDS cases, regardless of means. I was assured of that when I was first diagnosed. Admittedly, Iâ€™m not sure if Ryan White also covers the cost of medication.
Comment by: Debra
Mon., May. 28, 2012 at 1:40 am EDT Have you looked into what your state might offer? In Maryland, we have MADAP, which helps you pay for your meds and is income-based. Check with your state's Department of Health and Human Resources (or Services). Good luck and I hope this information helps you.
Comment by: allen
Mon., May. 28, 2012 at 5:05 pm EDT you might be able to apply for state aid depending on how much you make. I am on state aid at which the state pays the cost of my co pays. you are right the atripla is about 1600.00 a month. my insurance pays about 1400.00 and the state pays the rest. check with your local aids and HIV resource center if you have one they might be able to help to see if you qualify for state aid. good luck.
Comment by: Holly
Tue., May. 29, 2012 at 4:13 pm EDT Ryan white programs should be available threw your local health deptarment
Comment by: Jokita
Tue., May. 29, 2012 at 4:16 pm EDT The state in Florida pay for my insurance and the healt department for my copayment
Comment by: Leon
Wed., May. 30, 2012 at 1:07 am EDT Go to your insurance companies website or ask your employer for the customer service number for the insurance company so that you can get immediate information on your healthcare plan. In the meantime go to the Whitman Walker clinic in downtown DC. They have a program for people in your predicament and it is based on income. I hope you get help before your health gets too bad. At the Whitman Walker Clinic they will "say" that you are required to be a DC resident, but they do not verify that you are so use a friends address.
Comment by: Ann W
Wed., Jun. 20, 2012 at 4:02 pm EDT The drug compaines also have patient assistance programs where you can get meds free or for a very low co-pay. Check with your local Aids Service Organazation for help.
Comment by: Julaino
Sat., Aug. 18, 2012 at 5:18 am EDT I understand, I'm taking the same meds for 10 years, Contact your local Ryan White office to find ADAP (AIDS DRUG ASSISTANT PROGRAM). They should provide you with the medications. Until then apply for Medicaid and disability while it is here.
Comment by: Wanda
Sun., Dec. 9, 2012 at 9:38 am EST County funded hospitals/health departments often provide treatment for HIV free/low cost since it is generally considered in the best interest of the individual, the government, and population at large for infectious diseases to be properly treated. I hold a wish for your angst to subside long enough for you get things back on track before anything worse happens to deter or delay your health/happiness.
Comment by: Lisette
Tue., Mar. 27, 2012 at 9:14 am EDT
Sorry for everyone dreading your meds but it will be forever for you. With so many people with AIDS and cancer there is really no incentive to find a cure for either. The pharmaceutical companies are making GA-BILLIONS. You really think they care about you? Think again.
Comment by: Nikki
Tue., Apr. 24, 2012 at 5:41 pm EDT I agree with you 100.
Comment by: preston
Thu., Apr. 26, 2012 at 4:11 am EDT you are so right.I have a friend that my wife and I have known who works at scripts in sandiego.. He came down with a very bad form of cancer that has killed people he is still with us..so I am trying to say there is a cure but reserch is being paid each month millions to keep hush hush.. Sad and very upset not with our friend but goverment.He has and others have alnost blown the wistle in order to give out the cure for millions..it is all about money not human life.
Comment by: Debra
Mon., May. 28, 2012 at 1:36 am EDT I totally agree. As a woman living with HIV, I cannot BELIEVE how much these meds cost. Thank GOD for insurance. There is no MONEY in the cure and that's why, IF there is a cure, they are going to work it till they HAVE to give it to those infected with this awful disease; until then the money is in the meds!
Comment by: Sunny
Sun., Mar. 25, 2012 at 9:46 am EDT
Hello, I've read some posts and I sympathize with each and every one of u...it is very vital for you take your meds on a regular basis. There are different regimens and although one may be great for you, it may not be great for the next person. For the ones who have problems receiving their medications, there is a great pharmacy here in Florida that will ship anywhere in the country. They also are bry familiar with different assistance programs to help you with getting your medications. Please feel free to call them: Commcare Pharmacy, 561-615-4508. They are great at what they do, specializing in HIV, hepatitis, oncology and other disease states. They also have two other locations in south florida as well.
Comment by: Jim
Fri., Mar. 23, 2012 at 4:18 pm EDT
How about despair? Just flat out feeling so beaten up by life and disappointed in people that fighting the fight seems futile and endlessly disappointing. Blah, blah, blah. Yes depression. Tell me something I don't know. Sometimes being proactive about taking care of myself evokes feelings of hostility and resentment because of the guilt that I feel for not feeling grateful for having the opportunity of managing my HIV. Are my thoughts unique or would self destructive behavior be something that I have in common with others?
Comment by: Lee
Wed., Apr. 4, 2012 at 8:21 pm EDT you hit the nail on the head. feel exactly the same way. i am hoping to find a support group where we can share our experiences and daily victories, cause everyday is really a triumph. hang in there.
Comment by: Rickey
(New Orleans, LA)
Tue., Jul. 31, 2012 at 12:15 pm EDT I think despair is what led my partner of 17 years to choose to completely stop taking his meds in September 2008 and refuse any help from me or anyone else. He died September 2011. I understand it's not the issues we face, that's living; it's the refusal to choose to use whatever means are necessary to help ourselves especially when we really don't want to.
Comment by: gary s.
Sun., Feb. 26, 2012 at 4:08 pm EST
found out i was hiv just befor xmas 2011 my cd4 acount was146 i was really ill when on hiv med feb i take two pills at nine lost 2 stone in weight putting bit back on but dont wanna be too fat like i was i dont mind taking them fine they ok was hard a first to get my head round that i had hiv but now am sound never not took my pill i take some out with me too and take them at nine in the evening they there to help us so come guys take them we all wanna live full life
Comment by: John
Sat., Feb. 25, 2012 at 2:34 am EST
Five years ago when my doctor told me I was HIV positive, I wanted to do what he suggested, I wanted to believe him and take the medications so I could live as long as possible. Today though I'm healthy, strong and I've been tested HIV negative. If I had started the ARVs I likely would have died already. Thank God I read more about how HIV testing is unreliable and how the AIDS drugs actually cause the very condition(s) they're supposed to prevent. I can only pray for all those poor souls who are taking their HIV meds that someday too they will walk the same path I did.
Comment by: Mark V.
Sat., Mar. 24, 2012 at 1:13 pm EDT It was great it did work for you
Comment by: rod b
Wed., Apr. 18, 2012 at 11:29 pm EDT well I feel that the HIV/AIDS epidemic is a big ass rip off from the meidcal establishment and the medications being taken causes the AIDS....its so much information out here to self educate yourself on this ISSUE....have your own mind and dont give your mind to the diabolical medical establishment...
Comment by: Chris
Thu., Apr. 19, 2012 at 7:35 am EDT smart man
Comment by: John
(Santa Fe, NM)
Wed., Feb. 22, 2012 at 1:53 am EST
I am a 50 year old hispanic man. A gay man of my age and from my generation is so fortunate to be alive because, I should have died from HIV/AIDS. I didn't. I take Atripla and keep to my regimen without fail. It's become second nature. I clearly remember the days when being diagnosed with HIV/AIDS was a near certain death sentence. I've witnessed friends and some gay family members who experienced an agonizing and horrific death. I vividly recall the early days of this plague, waking in the morning and running to the mirror to see if KS lesions were present on my body, or if some other signature malady like fungal growth in my mouth was evidenced after a night of sweats. Many friends, family and former lovers have not survived this epidemic to have experienced the continued gift of life through medication regimens that keep many of us alive and well in today's world. I am so very, very thankful for being alive and having these medications to take. I recognize and understand the challenges, but I am alive!!! What an incredible homage to those we've loved, lost and love. I truly am grateful for these profound medications and I genuinely hope that someday a cure is discovered.
Comment by: Sam
Wed., Mar. 21, 2012 at 10:55 am EDT Hi. I read your post. My BF just started taking atripla and he has developed a terrible rash on his entire body. The doctor said that it will go away. Did you experience that and give you give me feedback. Thank you
Comment by: Princess
Wed., Mar. 28, 2012 at 2:27 pm EDT Hi Great encouraging post!
@Lexington, KY Please ask you BF to ensure he has been tested for other STDs also. Some have incubation period and it's possible your friend has some else not related to HIV/AIDS (ie.. Syphillis). Good Luck!
Comment by: Michael
Tue., Jan. 22, 2013 at 2:23 pm EST Thank you for your post John. I too remember the days when being told your were positive meant a horrible death was your future. I kept my head in the sand after loosing my partner in 1990. I never got tested, never dealt with the grief, never went on meds. The outcome was that I found drugs, sadness...crystal meth. It was only when I was so sick and tired of being sick and tired that I came in to the rooms of Recovery, got sober, got tested. I am now sober 4 years, have t-cells in the 600's, and high percentage and all I have to do is eat, sleep, have fun, stay sober, and take 3 pills a day - Isentress and Truvada. Thank God AZT is in the past.
Comment by: ca
Sun., Feb. 10, 2013 at 9:34 am EST i too am on atripla and have been for four years, i always take my meds and thank god that i have those meds available so i can be here for my family and friends.sometimes i feel less than but try to remember god must have a purpose and plan for me and everyone else.
Comment by: Andrew
Tue., Feb. 14, 2012 at 4:58 pm EST
It is a drag being tied to a pharmacy. Yes I wish they would find a sterilization cure for HIV. I take one pill a day. I take 9 Vitamins a day. Taking the pill doesn't bother me it's the stress that someday that pill won't be there that drives me crazy.
Comment by: G. Morgan
(San Francisco, CA)
Sat., Jan. 7, 2012 at 8:06 pm EST
The biggest obstacle to adhering to my medication schedule is dealing with the bureaucracy of both ADAP and MediCal (California's version of Medicare). Each year I have to document income, tax returns, bank statements, copies of life insurance policies, safety deposit boxes, cash on hand at home, title to my car, proof of residency, insurance information, etc. The frustrating part about this is that ADAP mandates I apply for MediCal every year even though my share of cost each year varies from $1800/month to $1900/month. In other words, after all that bureaucratic run around the benefit I get from MediCal is nothing. But, ADAP won't renew me unless I jump through the MediCal hoops every year. Two years ago I was so piss off by the futility of applying for MediCal that I let my ADAP lapse for 8 months. The idea of going through the MediCal gauntlet was so overwhelming; I decided to do without ADAP for the 8 months. Needless to say, my T-Cells dropped, my viral level went into the millions and my doctor was so concerned he changed my blood testing schedule from every three months to every 30 days. So, every month I watched HIV destroy my immune system and some how this seems preferable to dealing with MediCal. I finally got my act together and finished the application for MediCal (and got a $1980/moth share of cost) just prior to the following years ADAP being due again. So, that year I didn't have to go back to MediCal as I'd just been approved. What scares me for 2012 is that my ADAP expires in less than two months, my MediCal expired three months ago (I didn't renew it because ADAP was approved through the next year). But, now the whole useless process of applying for a benefit I don't need has to start again or ADAP will again cut me off. I've also read somewhere that in 2014 ADAP will be eliminated and State Medicare will take its place. Joy.
Comment by: mz j
Fri., Mar. 23, 2012 at 12:13 pm EDT have you ever heard of the ryan white program i was diagnosed 3yrs ago i take atripla and 50,000 unit vitamin d pill once a week i work part time so the program was offered to me i dont pay for anything check into it just trying to help
Comment by: Jay
Thu., Apr. 19, 2012 at 2:45 pm EDT i moved to Massachusetts for their free health plan. I left Texas for the very reasons you described. Mass Health has been awesome and the hospital ER filled out all my paperwork online. Fenway Health Center is a great facility for lgbtq hiv poz people too. i realize moving is not for everyone but i couldnt afford to live anywhere else due to medical costs
Comment by: Mia
Fri., Dec. 2, 2011 at 5:22 am EST
I honestly just don't feel like it. I think about taking them and then I decide, with no real reason, not to take them... It's like it's a kind of rebellion against the virus. Almost like saying: leave me alone, you can't kill me, even without meds. Silly, irrational, stupid maybe, but it makes me feel stronger. I don't do this every day or every week even, only once in a while.
Comment by: Many
(San Fernando Valley, CA)
Mon., Dec. 19, 2011 at 12:51 am EST Hi Brian, how long had you been under this regimen ?...not getting some help from state funds ?
Comment by: Tom Wiseman
(Santa Ana, CA)
Thu., Dec. 1, 2011 at 3:08 pm EST
I fear that when government gets involved in this catastrophic disease, this epidemic will get worse. By providing a short term relief effort thorough medication there is no behavioral changes that should be empathized. For instance, condom usage but that is not working. Now the gov't is giving away the relief of medication. So there will be a increase of AIDS/HIV infections. Look for it within 6 years.
Comment by: Tim
Mon., Nov. 28, 2011 at 11:09 pm EST
Just found this web site and it is a great place for those of us living with HIV.
Just reading the comments makes me realize I am not alone.
I have been HIV+ for 26 years now.
I have been on and off meds and my viral load and CD4 has gone up and down.
I now use a AM/PM pill box load it up once a week and use a 9/9 program.I medicate at 9 in the morning and 9 in the evening.
That works for me.I slip up and forget some times but when I look at the clock and see it is 9 it makes me think if I took my meds or not.
It has become a habit.
HIV is now treated like diabetes.You can live with it with lifestyle changes.
Comment by: AL
(San Diego, CA)
Mon., Apr. 2, 2012 at 8:17 pm EDT I first tested positive in '88. Since then I've been on and off meds. When I first started AZT, I expected to taking it until I died. Now I'm on something else. One prescription gave me hallucinations. I have mixed feeling about the whole thing.
Comment by: Pinky love
Sat., Nov. 26, 2011 at 3:11 pm EST
I want to take my med's and sometimes i really mean too but when i see the pill bottle I instantly get sick and depressed. Only been pos for 3yrs im only 21 it's just taken me time to cope!!
Comment by: tamara
Sun., Feb. 26, 2012 at 7:30 am EST I can so relate to you because I've only been possative fir 3 years also and I can't even think about taking them and my stomach gets queezy and I get depressed and stressed out because its a reminder everyday of a very discriminated virus and not to mention but the pills I take are called kaletra and truvada and they are huge. And taking 5 a day once a day is very hard. But I really felt your feelings on the pills ....its nice reading about other peoples experiances....it actually makes me feel not so "alone" anymore.
Comment by: yve
Wed., Nov. 23, 2011 at 4:43 pm EST
i hate my meds i never take them, i wish i could but they trigger my anxiety i dont know what to do, living with hiv
Comment by: Ron
Sun., Nov. 20, 2011 at 9:26 pm EST
My partner and I have been positive for 24 and 26 years respectively. We've both been on numberous different comb therapies and have weathered the many, many 'storms' of HIV treatment, including the nightmares, diarreah and wasting...until now. After all these years, my parnter has developed a gag-reflex when taking his meds to the point of dry-wreching and vomiting. Miraculously, he has mainatained no VL however this is hardly a sustainable situation if he cannot resolve. Your advise would be greatly appreciated.
Comment by: kim
Mon., Nov. 28, 2011 at 1:06 pm EST could he try spraying a novacaine spray in his throat before swallowing meds? maybe if it were numb his gag reflex would not be triggered? the other is to put pills in something like peanut butter or other food item he likes and can just swallow. hope this helps.
Comment by: Robert T.
Tue., Nov. 15, 2011 at 5:57 pm EST
I've had AIDS for 23 years and ben on meds for 22 of those years. For me, I go on-off, choose to not take a morning or evening dose, or just one of the many pills. After being only 80% adherent, I've just received my latest counts. They're exactly the same as when I was 100% adherent. I am NOT advocating pulsed therapy or NOT taking your meds. But I feel there must be some immune response left in my poor, tired body or my labs would be different. I suppose as every BODY is different, so would be each person's viral response to less than 100% adherence. Maybe a study or two would be good?!
Comment by: David
(Palm Springs, CA)
Sat., Nov. 12, 2011 at 5:42 pm EST
I take my meds every morning and evening as I have for the past 16 years. It gets easier to remember, it is part of life, like eating to stay alive. I have been HIV positive for 30 years and I never thought I would make it to the millenium so I am appreciative to have meds to keep me alive but they do have side effects, especially after you have been on them a long time and while I know it is important to keep a positive outlook, it does get tough. We must keep fighting for a cure.
Comment by: rick
Wed., Jun. 20, 2012 at 8:48 pm EDT Thanks for ur comment, what meds are u taking or have taken, and what side effects showed up?
Comment by: Mark
Fri., Nov. 11, 2011 at 1:00 pm EST
I am now looking at alternative therapies, and I am coming off these damn medications. The search for a cure 31 years on...What a rip off...Big PHARMA Just keep you well enough if you keep popping those pills....Profit before people ££$$$$ welcome to hell. And there's the numerous side effects from those...I am trying something new.
Comment by: Liv Turner
Wed., Nov. 9, 2011 at 1:02 pm EST
Aids in America is growing by the day. We tend to close our ears hoping it will go away or ignore that there is a problem. Until everybody takes this serious, things are not going to change. I had a family member that passed from Aids. So knowing first hand the effects that comes with this is hurtful, very. This will not go away until money is given to educate.
Comment by: Andy
Sun., Nov. 20, 2011 at 2:51 pm EST Nope, sorry, wrong, there are many ways this could "go away". Education does almost nothing for those who already have HIV, and we have a problem when HIV sites stop prioritizing care for those who have HIV. Lets try again. Repeat after me: "This will not go away until money is given to A CURE, BETTER TREATMENT and to educate". Try repeating it ten times every day, and maybe we'll start making some progress.
Comment by: Michael
Fri., Nov. 4, 2011 at 9:12 am EDT
Feeling sick and tired of the perpetual pills, pills, pills. Tired of having HIV every single day forever. Fatigue and more fatigue no matter what. HIV is rotten.
Comment by: John J.
Fri., Nov. 4, 2011 at 8:02 am EDT
Very rarely, if invited to a friend's for dinner, I may forget because my schedule is different. I usually remember to take them, however.
Comment by: JR
Thu., Nov. 3, 2011 at 5:50 pm EDT
I was infected two years ago. I came out in 1990 and saw so many die. It just kind of erks me when people complain about taking their meds. I am so greatfull to have them that I dont care if my hair falls out or my nails turn pink or I grow breast on my knee caps. It really doesnt matter. Meds are life. I thank God and remember those who didnt have this option ever single time I take them.
Comment by: superjesse
Sun., Nov. 6, 2011 at 6:01 am EST J.R.... That is the Best way to Put This .. I am forwarding this to my 10TH.graders .. Keep up your heath and stay safe..Westheimer and Voss ..
Comment by: Robert
Thu., Nov. 17, 2011 at 10:59 am EST thank you for your comment this is what i want to hear, somebody who is doing the best he can and following life, looking for ways to manage side effects i find many depressing ones and this is what caught my attention and help
Comment by: jeane
Thu., Nov. 3, 2011 at 3:22 am EDT
the shape of the pill is the biggest challenge for me. an elongated capsule shape pill is perferct as it goes down easily, even when i'm sleepy. however the large & circular ones are difficult to swalllow (you gag on it and taste the horrible pill taste) and make me dread pilltaking time.
besides that i have an alarm on my phone and carry 2extra pills when im going out and not sure of the time i'll be back home.
Comment by: Michael
Wed., Nov. 2, 2011 at 10:20 am EDT
I've been taking my Atripla since January 2009 every night at 11:00. I have the alarm set on my cell phone to go off at that time, and I have a weekly pill box to keep track that I'm on schedule. If I travel out of town, to a different time zone, I'll just take my pill one hour sooner or later to keep my 11:00 time consistent.
Comment by: Gail
Thu., Nov. 10, 2011 at 4:40 pm EST I been taking Atripla since July 2008 and I do the same way you do setting my alarm on my cell phone at 11:00 along with a weekly pill box. I am truly thankful to God for allowing medication and help to be available. God is so good!
Comment by: Alan Goodwill
Tue., Nov. 22, 2011 at 12:32 am EST I am same way just time your self and you can always take it couple hours earlier or later but make sure to take them , when I travel to the other part of the world I try to match the time and 24 hour time frame , and even you forget , take it again, you will be just fine , and like others say we are fortunate and thanks GOD that we got medications, so side affects who cares as long as I live not to worry much , what happens if you die by a car accident ...So enjoy the life and cherish :)) and not to worry all. And yes using the Pill Box makes it easier if you take day daily , sometimes I do get forgetful too but pill boxes are great help.:) Stay healthy friends Life is Great :))
Comment by: allen
Mon., May. 28, 2012 at 5:23 pm EDT I have been on atripla now since 2009 (tested pos. in 2005)i have had no side affects other then having trouble sleeping once in awhile. oh and i have some wierd dreams once in awhile. I take mine every day before bed but sometimes never at the same time. My doctor told me not to worry If i did not take them at the same time every day.
Comment by: Shawn W.
(Salt Lake City, UT)
Tue., Nov. 1, 2011 at 2:24 pm EDT
Alcoholism and drug addiction are barriers for some. I think part of the Harm Reduction movement should include helping addicts living with HIV/AIDS be consistent with their medications until they are ready to stop using.
Comment by: Mel
Tue., Oct. 4, 2011 at 12:50 am EDT
I found that a AM/PM Pill box really helps me remember if I took my medications. I prepare it once a week. Then if I get busy and not sure if I took it a quick look at the pill box will tell me if i missed a dose or not. Takes about 10 minutes to prepare it for the week. Try it, it might help you too.
Comment by: Will
Tue., Nov. 15, 2011 at 9:57 pm EST I agree, however I am disappointed in pill boxes, they are NEVER big enough to hold all of my meds in each compartment and are usually limited to dosing 4 times a day.
Comment by: Leon
Wed., May. 30, 2012 at 1:41 am EDT To Will in Florida...if you are not satisfied with pill boxes then try making your own from something else. Art & Crafts stores have cases for artist to put paints in of use a button or bead case, or a bait& tackle box just draw in the days and times with a permanent marker.
Comment by: ndungu
Tue., Sep. 13, 2011 at 3:27 am EDT
I concur with Turner about women being concerned about the changes in their body weight and shape. Collateral damage seems to take place in the long run (fat redistribution among women and loss of fat for men esp on the cheeks). However the good outweighs the bad and I believe that one can cope with the side effects in the long term. Skipping meds can lead to HIV mutating and also lead to resistance.
In our hustle and bustle of every day's activities one can easily forget to take his/her medicines. We need treatment buddies who can be of tremendous help and remind us to take the meds. They can also give us a good support system.
Alcohol/substance abuse can also make us not take the ARVs. Research has documented that most persons living with HIV also have alcohol/drugs related problems. One should be open to his/her HIV clinician in case one is struggling with addiction and counselling can take place. Uncontrolled alcohol intake will hasten the disease progression.
Comment by: Pete
Mon., Sep. 12, 2011 at 7:53 pm EDT
I'd like to give a voice to the other side of the story. I always read/hear about how difficult it is too adhere to the drug regime. So, I delayed starting meds for 6 months while i needlessly worried about if I was ready, how would i know i was ready, and from a lot of the articles, how huuuuuuuuge a life change this was about to be...
Well...I'm 1 year in too taking meds...and i just want to say its easy, easy, easy, easy!
No - I am NOT saying that it's easy for everyone...i initially turned red as a beetroot and was itchy for a week...and i accept there are real challanges for a lot of people...(least of which, Atripla is paid for by our Healthcare system in Australia) but if you are just a regular Joe/Jill going about your day to day life...Its so much easier then a lot of the adherance articles suggest...
Comment by: tony
(st louis )
Fri., May. 17, 2013 at 10:32 am EDT I had a bad reaction to atripla stribild is doing god for me
Comment by: anna
Mon., Sep. 12, 2011 at 4:20 pm EDT
most of the time i take my meds right after dinner. the reason when i skip them is when i sit down & i doze off. i wake up next morning and then i remember half way thru the day. but i always take them except for those times. i usually know at the end of the month when i see how many pills are still in the bottles. this is an unforseeable event that is not anyones fault. i believe that there has not been any effect on me when i do miss them is because i usually always take them every day at the same time. so accidents happen but with prayer and gods grace i have been doing great.
Comment by: joyce Turner Keller
(Baton Rouge, Louisiana)
Mon., Sep. 12, 2011 at 11:22 am EDT
Many women are concerned about the changes in their body weight and shape;the excessive fat fat around the waist and abdomen. It is difficult to look at yourself in the mirror and see the obvious changes. We have to decide if we want to look good or feel good. I decided both. I take my meds, exercise, and eat healthy.
Comment by: Maria J.
Tue., Jul. 31, 2012 at 9:44 pm EDT You are correct Joyce. That abdomen! but I take my meds and exercise. 22 years and counting. I feel so fortunate as a women to be alive. The man I was with didn't think enough to tell me about his alternative life style. I stopped feeling sorry for myself and only pray that behavior is not still on going on.
Comment by: john
(Los Angeles, CA)
Fri., Sep. 14, 2012 at 6:58 am EDT HIV meds increase cholesterol and tryglicerides in the blood. I had a fat middle from the meds until my Dr put me on prevestatin. My cholesterol went down and so did my belly.
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