Living with HIV

Discussion in 'Relationships, Discrimination, and Jealousy' started by alan_b, Nov 29, 2011.

  1. alan_b

    alan_b Member

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    So, have we many members on here who are HIV+?

    If you are, could you maybe please explain about treatment, the length of time it took until you needed treatment, side effects, who you told and who you havnt and why? How potential partners and anyone else for that matter react?

    I was in work yesterday and got a voicemail from my GUM clinic. They asked me to come in as a test had come back positive. They wouldnt tell me over the phone what it was but I was aware what blood is used to test for so it was a nervous couple of hours until my appointment.

    Incase you havent figured out, I was told yesterday that I am HIV+.

    My head is just all over the place at the moment. Ive also told my ex partner that I am positive and at the moment I think I am more concerned for his own well being than my own.

    Can anyone offer some words of advice .. . . . . :frown1:
     
  2. ManlyBanisters

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    :hug:

    I have no advice for you - I just wanted say I'm sorry you got that news. I'm sure you know this but HIV is not the death sentence it used to be, remember that.

    There are members here who can help you with these questions, and others, and point you to a lot of useful resources. I wish you luck.
     
  3. niceone0305

    niceone0305 Active Member

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    I would be glad to chat with you.....I have been HIV for 12 years and am healthy.
    I do take meds everyday.
    Today HIV IS NOT A DEATH SENTENCE !!
     
  4. alan_b

    alan_b Member

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    I know its not a death sentence anymore, but its still a huge shock. I get my cd4 and viral load levels on thursday evening which I guess will dictate how we go forward. I was last tested back in May, but they said it can take a few months to show so we could be talking approx the start of the year I was infected.

    Ive sort of decided not to tell my parents, but I will tell my brother. My parents have had a bad year, with my god father committing suicide and my uncle suffering from mental illness, so I dont think they would be able to take this in the way that they normally would.

    I just feel so lost, and completely angry at myself.
     
  5. MarkLondon

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    You'll find some wonderful knowledgeable and supportive HIV+ people here. The only thing I'd suggest is asking the clinic and your doctor about hiv support groups locally. Its still a traumatic diagnosis, and not one you should be left to cope with alone. I wish you all the best.
     
  6. avg_joe

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    Cocktail therapy would be your best option. Talk to your doctor ASAP.
     
  7. D_Ampelius_Halfinch

    D_Ampelius_Halfinch Account Disabled

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    I can't imagine what you're going through mate, and I can't say I'm too knowledgeable about HIV either. I know that treatment has come a long way so that's gotta be reassuring.

    All the best mate, take care
     
  8. ManlyBanisters

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    Yeah, that's totally understandable. Please don't forget to ask your doctors about what emotional support is available to you.

    Being angry with yourself is natural and normal but ultimately fruitless. Beating yourself up over the how and the why of becoming HIV+ won't change a thing. Don't get bogged down in the past, you have a long and challenging future ahead of you. By all means recognise, embrace and learn from your mistakes but don't focus on them to the detriment to your future.

    I'm not saying 'suck it up', I'm saying recognise it and allow yourself to move on.
     
  9. alan_b

    alan_b Member

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    I get my blood results back on Thursday evening. So I guess they will decide then what/if I need to be on anything.

    Once you start treatment and the viral load is reduced, does your CD4 count go up and you can stop taking them or once you start are you always on them?

    I asked so many questions but tbh I dont remember the answer to any of them. Likewise, I spent all night reading about it and therefore couldn't sleep. And I didnt take any of that in either!

    Thanks for the good wishes guys.
     
  10. Rommette

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    Alan, I'm so sorry this happened to you. I wish you the best of luck. I don't have HIV but I'm pretty sure that you would be on some kind of medicine for the rest of your life. It has been possible (but very rare) for people who once had HIV to have it so under control that it is undetectable however they still keep taking their medicine. If you don't take it like you're supposed to the HIV may turn into a strain resistant to your medicine. That's why you will take medicine for the rest of your life. To stop taking the medication after its under control is taking a risk on your life. Always remember it can comme back at any time and can be much stronger than it was before (and if that happens the same meds may not work).

    Don't be ashamed of your status. I met a HIV gay male and he told me the first day I met him. We hung out, went shopping and I treated him like everyone else.
     
  11. avg_joe

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    I have a friend who is HIV+ and has been living with the virus for almost 20 years. He takes the medicine regularly, but recently he reduced the amount because the side effects were very strong. He avoid alcohol, cigarettes, marijuana etc., and try to stay healthy and fit. AIDS is no longer a death sentence.
     
  12. OhWiseOne

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    I can't speak on this topic. Just want to wish you the best.
     
  13. TopDudeFtl

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    I know exactly how you are feeling, my partner was diagnosed in 1999 & I was diagnosed in 08/2008. I was immediately prescribed two different meds as well as a very strong antibiotic. I was in very bad health at the time with an extremely high viral load & a t-cell count that was barely detectable. I followed my doctor's orders & began taking better care of myself with exercise & a better diet. After 6 months I was taken off the antibiotics & in January of this year my viral load was undetectable. Remember to always take your meds & DO NOT miss a dose. After my initial diagnosis, I set reminders for my meds; once in the morning & once in the evening. I still take my meds twice a day & couldn't be healthier. Well, that's not entirely true; my doctor says I should get back to my diet & exercise that I was doing before because I am getting a little pudgy. HIV is definitely not a death sentence. There are plenty of support groups out there, you just need to look for them. I wish you the best.
     
  14. niceone0305

    niceone0305 Active Member

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    You will go through all the emotions of blamimg yourself etc.....part of the process..
    What happened,happened......dont dwell on it...look to the future.......you have full life ahead of you.Always remember that you dont have tell anyone how you contracted the disease all you have to say is I am HIV positive.....It is the law.that includes DR.I know you are frightend.....The HIV drugs are very expenisve,but there are programs to help pay for them.Such as HDAP....check with your state.....
    My drugs cost me 2,500.00 a month...but my state has programs that cover them,plus my health insurance.I am on medicare A+B, and blue cross and blue shield.
    The blue shield premiums are payed for me by the CHI program.Another very important
    thought NO DR. IN THE USA CAN REFUSE YOU TREATMENT OR THREATEN NOT TO TREAT YOU BECAUSE OF YOUR STATUS.I will admit the side effects of the drugs can be severe,but LIVING IS MUCH MORE IMPORTANT.I take Reyataz,Truvada,Norvir and Dapsone daily.The drugs cause me to have very high cholesterol.....I did have to have a heart bypass operation..but I AM ALIVE AND WELL.SO,you will be ok....just take care of yourself,take your meds,get your flu shot,pneumonia vaccine,winter is a rough time for HIV people cause of being cold,flus etc....
    My CD4 are 300 and viral load undectable !!

    AS AUNTIE MAIME SAY"S "LIVE,LIVE" !!!
     
  15. alan_b

    alan_b Member

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    Hi Niceone,

    I like in the UK so luckily my treatment wont cost me anything, although I am fortunate enough to have health insurance anyway through my work.

    I understand you have to tell your GP and dentist, but who else has everyone told? I have two close friends (one went with me, the other being his wife) who i told but im scared of the stigma attached to it and how people would react if I did tell them because so many people are completely uneducated about it over here. Not that I want to go tell everyone but there are some people that I guess I would feel like I am keeping something from them. I dunno. I think its time for a nap.
     
  16. billblows4u

    billblows4u Member

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    everyone has said HIV is not a death sentence and that is true. however, the other side of HIV is it is now considered a chronic illnes like diabetes and heart disease.

    you will be fine.
     
  17. dandelion

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    Blimey mate, sorry to hear.

    Its difficult to give advice because it will depend. If you had a test this May then even if you had it at that time and it didnt show, you have had it for less than a year. Untreated on average people take 5-10 years to get sick, though they are infectious through this time. The thing about it is that as fatal diseases go, its actually a pretty weak one.

    It does vary from person to person but I understand generally what happens is your body has an initial illness which might be like a bit of flu or even nothing, then gets the virus largely under control, then slowly loses the battle over the years. There is some natural immunity in the population so that a few people may even be completely immune, and some are better at fighting it than others. Staying fit and healthy generally helps.

    The blood tests should show what stage the virus is at. In the future these will be tested again to see how it is coming along. If the tests show you have only just caught it and are in the first stage of infection then they might suggest an immediate regime of drugs to hit it hard before it takes hold. This is now done for people who know they have just been exposed, like medical accidents with infected blood.

    There is debate in medical circles about what is the best way to treat it longer term. This is partly because the drugs are so expensive, but also because they have side effects which arent much fun and importantly because taking the drugs the wrong way can be worse than not taking them at all. I understand, however, the side effects are much less severe than they used to be, even to the point some people dont notice them. When you get a specialist they should explain to you that there are now quite a few drugs so its a bit like the problem with antidepressants, some suit one person and some suit another. So when it comes to drugs, do bellyache and talk about side effects because it may be possible to adjust yours to get rid of them.

    Current advice is to start drug treatment when your CD4 count falls below a certain level. This may take years. Over the years the recommended level when to start has gone up, partly because the drugs have got better and because taking them earlier has been shown to keep people healthier. This is still experimental, because the drugs are relatively new and doctors have to try them out for years to see how people really do with different regimes long term. The aim is to keep you healthy until something else gets you in the normal way.

    HIV is as retrovirus. This says something about how it works, and part of that is that it is a really crappy reproducer. Animal DNA is designed to give you perfect copies every time a cell reproduces. The method the virus uses is much more sloppy and genetic changes happen daily. Most of these make the virus weaker, but some are capable of protecting it against the drugs used to treat it. The fact it can mutate very quickly is why it easily builds up resistance to a drug. The solution to this is to give at least two drugs, probably three or more at the same time. The idea is that a mutation which might protect against one drug will not protect against a different one, so all new virus will be zapped by the drugs. So far so good. Trouble is, the virus establishes itself within your body cells, so though the drugs stop it reproducing, its still there waiting. Any time you stop the drugs it will spring into action again.

    I think current recomendations are once you start taking drugs, never stop. It is very important to take the drugs exactly on schedule because even a short break may allow the start of a buildup of virus resitant to one or another drug. And the idea is to keep you healthy indefinitely, so you dont want any slips which may become problems years later. The drugs now are formulated in combinations as well as singly so as to reduce the total number of pills and people have worked on drugs which dont have to be taken so often. One of the things whixch doctors think is very important is to make sure someone understands exactly how to take the drugs and even practices so there are no slip ups before they start real medication.

    The drugs come in families of similar drugs which attack the same part of how the virus reproduces. Then a different family attacks something else. So a doctor would choose a selection for you which attack different parts of the process. There is a standard treatment now for first choice which has best results for most people. Then vary it as necessary.

    There are websites about this stuff with reams of information, but I agree its very hard to get a handle on all of it, even if you arent worrying because its you.

    Telling people. Dont jump into it, you cant un-tell them. Some may take it quite badly.
     
  18. B_Hickboy

    B_Hickboy New Member

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    You have a fight on your hands that won't end until you do. I don't like to give advice, so please take what I'm about to say with a grain of salt:

    1. Learn all you can about your condition. It will help you in several ways, the chief one being that you'll live longer. It will allow you to work with your doctors, and will help you to feel like things are less out of control. The old saw that "knowledge is power" is never truer than when you have a potentially fatal illness.
    2. Get over your uniqueness. Find a support group and join it, even if all you do at first is to sit and listen or cry at their meetings. Be active in helping others. There are folks whose situations are similar to yours, and after meeting them you may find solutions to things you used to think were hopeless. The meaning and value of "not alone" will sink in over time.
    3. Grieve now. Having friends who've died of AIDS and others who've lived with HIV has taught me a lot about how to let go of things that must be let go of, and to love the moment I live in.

    Oh, and do associate with people who don't see you as an infection. Youi are not your disease, and it's unnecessary to spend time in the company of people who will slime you by thinking of you in such terms. Stick with the winners, and let the losers be damned.

    Love and prayers to you.
     
    #18 B_Hickboy, Nov 29, 2011
    Last edited: Nov 29, 2011
  19. niceone0305

    niceone0305 Active Member

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    Have told close friends,most of family is dead so that issue is off the board.Trust me,there is still great ignorance of HIV and discrimination by many,including those who preport to religous,so the US is no different than the UK.....people are people.Stigmas,you are to fat ,too short,nerd,jock.....these things you cant change.But by living your life to the best of your ability,by setting the example to others...Just cause I have HIV doesnt make any different than you.Dont expect people to have sympathy either......and you dont want that....But any how......
    Yes I get tired,yes,sure I get feeling sorry for myself.......I am human,but I always look around say to myself "Damn I am lucky....life is good"!
    Trust me.,,,,,stay strong,true to yourself,look in that mirror and say "
    I am ok.....I am gonna make it".....

    WHat I havent said is I have 3 grown boys......My middle son passed last year at 32......but all them said to me "Dad we love you and dont care about your illness".....So there you have it.

    Ciao
     
  20. alan_b

    alan_b Member

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    Thanks for all the kind words folks.

    @dandelion - some great advice there. Thankyou. In the UK, is there any advantage of private treatment? I have health insurance, I guess I should probably notify them and ask about it.

    @ Niceone - Very sorry to hear about your son, nothing sadder than one of your kids passing away before you do.

    @Hickboy - I like point number 2, its one to remember.
     
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