Living with HIV

dandelion

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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 cant answer that, I dont know. I also dont know what the current situation is with regard to insurance companies deciding you may be a bad risk. I think the advice above about becoming your own expert is important, but it does depend on the kind of person you are. Anytime you start looking up drugs for anything the side effects list is as long as your arm and downright intimidating. Im sure you know as well as me the NHS can be fantastic but it can also be a bit hit and miss. The one person with most at stake to find a good solution for you, is you. I think though HIV is the sort of disease the NHS likes. Ok, you cant cure it but you can get a good solution where someone is otherwise fit and healthy and able to go on with a normal life. Diseases of old age also soak up a lot of resources, but you know whatever you do the people are old and something is going to get them sooner rather than later. By the time you get that old, I would expect there will be a cure. (yes, I know, total hostage to fortune predicting scientific advances, but there is a lot of money going on HIV research. The snag might be that drug companies love chronic diseases as a steady income source whereas cures are one time sales. But HIV sufferers nowadays are generally fit and healthy and can be quite militant, at least in western countries which is where the research will be done, and everyone agrees it is a disease we would be much better without.)
 

FuzzyKen

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You are fortunate that you now know the story and were tested.

Properly treated and with proper nutrition, sleep and care people these days are living in essence normal lives.

I have done volunteer work for many years and did not give it up until I retired to NM from CA several years ago.

Your medications will depend on what is found by your medical treatment team. Very likely you will be placed on a cocktail of anti-retroviral therapy.

They will look at several things and monitor them regularly. These will be your viral load and your CD4 count. The CD4 count tells them what your immune system is doing and the viral load in an oversimplification tells them what the virus is doing.

The drugs used in treatment of HIV are not without side effects and over time these will manifest themselves. They are severe in some and others after a period of years show little to no ill effect.

The main things in the early stages are the most simple ones Food, exercise, alcohol and sleep. Cut the junk food to a minimum and balance your diet. Get tons of exercise and if you've never been a "gym bunny" now is the time to start. If you can give up alcohol completely your are better off because of liver toxicity of some of the combinations of medications. Look, I am gay too, there is no disgrace these days in going into a bar or club and ordering designer water. I am sero-negative and because of two medications I take for other things I can't have it as a beverage for the most part. In gay bars in Palm Springs I was never looked down on for not doing alcohol. The final component is sleep and you need to do the best that you can at getting a reasonable amount. In addition take preventative situations seriously. Make certain that you maintain your teeth and gums as best you can. The final thing is take advantage of freebies when it comes to immunizations. For a while you may be immunocompromised and those times are the most dangerous for you. The numbers you want to see are CD4's over 1,000 and an undetectable viral load. If you can maintain those two things you will be around and doing well for a long time!

Telling people is a personal choice and the only people that need to know are those who deal with you on a medical basis and those with whom you choose to have sex. HIV is not easily transmitted in normal casual contact. I am sero-negative and I dated and would have gone into relationships with men who were positive without hesitation. I have been with my "better half" for over a dozen years now and I can tell you that he is also negative, but I will also tell you that his HIV status was not the determining factor in our decisions in any manner. I understand how HIV is spread and you need to just be educated there yourself. There are many mixed relationships out there that are very successful. The main thing is the love between the individuals. The retrovirus that is controlled is not an issue if people use their brains as the ruling organs. With regards to family I would not tell anyone until you are prepared to do it and until they are prepared to deal with the knowledge.

If you need to have some available "sensitivity training" towards HIV, there are movies that individuals can watch that handle this in different ways. "It's My Party" is a downer, but is an exceptionally good movie and is factual for the times in which it portrayed the disease process. "Love Valour and Compassion" is yet another one that tells of lives affected and there are more. When you yourself are up to it, screen a few of these and see which ones can be used and most fit the individuals whom you want to inform. The one thing I disagree with is just throwing it out there because many people have so many wrong ideas about this retrovirus that they become overloaded quickly. The amount of misinformation deliberately spread by individuals with their own motives is substantial.

The biggest thing now is overcoming your own fears of the unknown and those of any significant other currently in your life. Those are the most important and you need to spend time dealing with this as your first priority. The family is number two. . . . . . Life goes on after an HIV diagnosis!

Best of Wishes
 

Red_Rebel

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I'm sorry to hear that alan_b. I can't imagine how terrible this must be for you right now, but I suggest that talking to your physician about the appropriate meds and a support group to help cope, acquire support, and get some better information from the best possible source about possible lifestyle changes would be best.

Don't bottle your emotions in and avoid blaming yourself...focus on "what to do next".
 
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Alan, Im so sorry to hear about what you are going through. I wish I could offer you more information or refer you to someone who could connect with you. My cousin was daignosed with HIV about a year ago. Everyone's responses have been similar to what I am about to say. It isnt a death sentence anymore, and don't be mad at yourself for having gotten it. It doesn't make you any worse than any one else. It doesnt make you dirty or unclean. It's a medical condition. I suggest maybe finding a support group in your local area if you can. I feel that they would be able to offer you the support and answers you are looking for.

I am planning on studying health communication in grad school to help better relay information on HIV/AIDS and other medical conditions to the general public. I notice that a lot of people when first diagnosed arent given any real direction emotionally. Honestly, this is something that I would like to see this changed.

Good luck to you and stay up.
 
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Sure, HIV isn't technically a ticket to death anymore but,

it sure is going to scare people from having sex with you.
 

dirkjesje

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It's now almost 13 years ago. I felt in love.
Married woman, I was divorced more than 1 year, and no relations in between.
After some wild drunken nights, we planned a holiday in Spain.
After that holiday, she wanted a divorce and to stay with me.
Until then we had allways "protected sex".
She wanted a test from me, so that we could have unprotected sex.
I let me tested on Herpes, HIV, and blood values. All good.
She got a minor report, she tested HIV+.
We are still happy together, healthy. Only, she was earlier in her menopause, end of this year she will be "Sarah"-50years.
She has allways took her medications (several/ 2times a day), which during the years changed a lot.
She's still at work as a marketing manager for feminine care (paper industry), while I retired early at age 54. ( burnout )

What I want to say is... there is still a life after HIV, it doesn t stop.
She had difficulties with the medications, but more with the image that people have over AIDS in Europe.
But for now, she's living like everyone else. Sometimes she gets anxious, mainly according to her doctor due to her menopause, that I will leave her.
Before, I got a test every year, but now it's more than 2 years ago, the last was still negative.

All the best winds to your direction.
 

ruggerkit28

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"In the UK, is there any advantage of private treatment?"

NO.

In the UK all treatment and drugs are fully covered by the NHS. Meds are prescribed by hospitals, so you don't even have prescription charges. You will also get the advantages of a VERY comprehensive medical every year that will pick up other conditions, such as diabetes, cholestrol, early.
 

BBB2.5

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It saddens me to hear that another person has been diagnosed with HIV. Especially now, with all the info out there, what's done is done. Now you focus on your life and how you live in it. This coming April I will celebrate 20 years of living with AIDS. Back then it was still new and the doctors were still learning the best treatments. I guess like most people I was scared, but when I got my results I was already full blown AIDS. I never had to worry about when was it going to change from just having HIV to AIDS. I nearly died that month, spent 6 weeks in the hospital. I decided then that I would not to worry about the little stuff. Especially not worrying about getting sick. Your worse enemy will be stress, try not to allow that into your life. yes, that is difficult, just don't let it rule your mind. I believe with all my heart that each person is in control of how they live their life and what happens to their own bodies.
From the sounds of it, you already have the best medicine, your family. keep them in the loop, no matter what happens to you. You may or may not ever get sick. If you do, tell them exactly what is happening, it will help, I promise you that.
I have a very very close large family and everyone is in my circle. Even friends are aware of my status. Only a few of my coworkers know, but that is because of my profession. There is no way anyone could catch HIV from me, but it still scares the hell out of a lot of people. So, to keep business strong I choose not to share that part of my life on the job.

Once you get all your results, your doctor will talk with you about your options, bring a family member with you, because you will still be in shock, and they will be able to listen with you. If you have questions, write them down, trust me it will help. Even those that you think are stupid question, ask them, it will ease your mind.

I have lived through many bad times, but I am here today 20 years later. The healthiest I have ever been in my 46 years of life.

It will be alright, once everything settles in.....:biggrin1:
 

alan_b

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Yep, I def had a think today about all the people that have lots their lives, and those that will due to being unable to access treatment.

On a better note, I received my CD4 today, which was at 500. Great news as far as I am concerned, it has put my mind at rest slightly. Next appointment is in two weeks time then it will build up to once a month in a while.

Again, thanks for all the kind words.
 

ruggerkit28

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CD4 at 500 is great. Haave a value for viral load?

As I stated above there is good evidence that if you start on meds early then you will get a decrease in viral load in your whole body - so less risk in transmission. I am not suggesting that gives you freedom to screw around without protection, but it is something to think about.
 

mikeyinbrooklyn

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I feel badly for you, and having to go through this. But I am grounded in a few comforting facts. 1) People who take their HIV medicine and take generally good care of their health live long, healthy lives. 2) There are groups out there that are able to help you with physical, emotional, social, and financial issues that accompany your diagnosis. 3) HIV status no longer has the social stigma it did. I have 2 close friends that are HIV positive, and they are healthy and happy lives. But both of them had their issues.

When the shock has worn off, remember a few things:
1) It is entirely unproductive to dwell on how you got HIV. While you have an obligation to tell your partner(s), you have no obligation to beat yourself up about it. Anger will neither make you healthy nor cure you. How you live your life from today forward is all that matters.
2) Educate yourself about HIV/AIDS, and steer yourself away from conspiracy theories and medical quacks. Follow your doctor's regimen, and ask what each drug does and what it's side effects are. Note: these will have side effects, but not taking them is MUCH WORSE.
3) Read the book "And the Band Played On" to learn about the history of the epidemic.
4) You can still have a romantic life, but you now play the game with altered rules. First, you need to be honest and upfront about your status with partners. Second, all sex must be protected (even if your partner is also HIV positive). You do not want to get or give a different strain of HIV, or another STD.
5) As far as telling family and friends, that is up to you. It sounds like not telling your parents now is a good idea. But family and friends can help you out tremendously, so don't dismiss their need to know. Also (much later on, when you're old), people often need to have other people assist in medical care and decisions. Springing HIV status on them then would be weird. I suggest telling close friends and relatives if they can handle the information.
6) Take care of your health! Eat right, exercise, vitamins and minerals. Don't forget about mental health!

Good luck. You are not alone, and you have an opportunity for a terrific, long, healthy life. Seize that opportunity!
 

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Yep, I def had a think today about all the people that have lots their lives, and those that will due to being unable to access treatment.

On a better note, I received my CD4 today, which was at 500. Great news as far as I am concerned, it has put my mind at rest slightly. Next appointment is in two weeks time then it will build up to once a month in a while.

Again, thanks for all the kind words.

Im glad to hear your CD4 is at 500. Did they perform a viral load test yet. Best of Luck my friend..live your life and stay happy.
 

Bbucko

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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.

Alan-

I have been infected since 1984, when I got a little too drunk and brought someone home from a bar who didn't believe that I'm a non-versatile top. He held me down, rode me roughly, came and left. About two weeks later I had the worst flu of my life which lasted for ten days.

As there were no effective treatment options, I declined getting tested at the time, even as everyone I knew seemed to be dropping like flies: I stopped counting the losses at 60, and it was still not even 1990 yet. By 1992, three of my exes were already dead, one was infected and one, though negative, was shell-shocked into a massive depression.

In 1996 two things happened to that changed my life: the first was the introduction of Protease Inhibitors and the resulting "Lazarus Effect", and the second was that I suddenly fell quite ill. As otherwise healthy 36-year olds don't normally get what I had, my doctor at the time suggested that I get tested. Both my then-partner and I came back positive, and I was mortified: crushed in a way that I've never really gotten over, though eventually I learned to move on.

Due to his inherently dishonest nature, I'll never know precisely whether I'd infected my partner or whether he'd already been infected when we met. But he would alternate between reassuring me that I was blameless with accusations that I'd been reckless with his health (an earlier broken condom certainly muddied the waters). That relationship, toxic as it was, endured for eight more years.

We found that not all support groups were the same. When we were diagnosed, we lived in Boston, which is a large and very cosmopolitan city, and took part in an excellent group for several years. When we moved to suburban Connecticut we found that the group was a haven for addicts and the mentally ill and dropped out pretty quickly. But by then, we'd talked the whole HIV thing to death anyway, and found private, individual therapy much more productive.

In the aftermath of that break-up, I eventually found an online support site called AIDSmeds.com; it had been founded by one of the original organizers of ACT-UP New York. I lurked for a bit, read lots of great information (still the single best resource for HIV/AIDS info on the web, IMO) and eventually joined. Like every other community, it has its strengths and weaknesses but there is no place on Earth where such a diverse group of people living with HIV/AIDS can congregate. There are men, women, neophytes, dinosaurs (like me), black, white, asian, people from every continent except Antarctica. The politics of the place means that I rarely contribute there anymore, but I do still post a few times each month.

Starting treatment in 1996 as I did means that I was subjected to just about all of the more lurid and gruesome side-effects imaginable, and all of it has taken its toll. One thing I've read here (and see everywhere, even at the HIV-related conferences I attend now and then) is that it's a "manageable" condition, and for many it is. But I am not now nor have I ever been an AIDS minimizer. People still die everyday from AIDS-related conditions in fully modern Western hospitals (or, if they're lucky, in hospice), under careful observation and all the latest treatments.

As we age, we dinosaurs are teaching the medical establishment about what it takes to truly thrive as a long term survivor, both physically and mentally. Our bodies are aging more rapidly than normally, and depression takes a dreadful toll; there's evidence of cognitive impairment and other signs of neurological issues that had never been noticed because most everyone before us died before they could be observed.

I'm not writing this because I want to frighten or depress you; I really just want you to know that there's another side to the story. But everyone's different, the virus mutates differently in everybody, and everyone responds differently to specific meds. Generalizations about living with the virus are dangerous things, because everyone needs to be every alert to his/her own body and how it responds (or doesn't) to different therapies.

Remember: you are the CEO of your own health care, not your doctor(s): he/they work for you, and you have the final say in treatment options. If I had adopted that strategy from the beginning, my overall well-being would be quite different now, I assure you.

As to disclosure: that's an extremely personal matter. At the beginning of my diagnosis, I only disclosed to those from whom I required understanding and support. For me, that included my sister, my landlord and the small staff in the store I worked in (including my boss). It took years before I was comfortable or proficient at it. These days I disclose to everyone, as there are no negative consequences in my life for doing so. But it remains an intensely personal decision.

Sure, HIV isn't technically a ticket to death anymore but,

it sure is going to scare people from having sex with you.

<Spits>

It needn't frighten anyone, but there's always an enduring stigma among the uneducated and afraid.

I made up my mind about six years ago to restrict my dating/sexual options to those who are already poz. It's a practice called serosorting, and I'm firmly in support of it. At least here where I live in South Florida, there's an embarrassment of riches in that regard; the poz/gay community here is huge. I understand that not everyone's quite so lucky, but I also know that I'm hardly living in some isolated Nirvana of erotic potential. When you're ready to dive back into the pool, do so in as rich and as inviting a pool as you can find.

PM me anytime.
 

TheEnforcer

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I am sorry to read this from you. I could imagine how you must feel; just a day or so before World AIDS Day and you get this news... I, myself ,am HIV- (as of Last monday), but I have volunteered and worked in HIV prevention for the past 8 years of my life. There are alot of people here who have offered lots of good sound advice. Just some advice I would like to add on or reiterate:

1)Listen to your doctor and have open dialogues with him about everything that experience (such as irregular side effects for prolonged time frames)

2) You still have an obligation to protect yourself an others - Just because you find a partner who is HIV+ as well, doesn't mean that you can have bareback sex without consequences. You can reinfect yourself with different strands of HIV, and also, you would risk introducing a fresh batch of HIV into your bloodstream which could overpower your current perscriptions. Which, you would then have to go to the doctor and get a stronger dose of meds each time this happens... (God forbid you have something like Hepatits B or C, which damages your liver anyway)

3) It might be hard at first, and you have every right to be discreet about it... but be candid about your status to your partners. Don't get caught up with the He said, She said gossip... you could become involved in a mess of legal problems if you neglect to tell someone and they did not consent to having sex with you knowing this.

4) Find support groups and friends that can help keep your spirits up. As long as you keep it to yourself and don't tell your family, you could definately use a friend to talk to about it that understands.

I wish you the best!
 

alan_b

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Just thought I would give this a quick update.

My CD4 count has stayed at 500 as expected. Viral load is 250,000.

My doctor mentioned the benefits of starting treatment early, instead of waiting until it drops to 350. I have been doing some research about it and spoke to a few different people, and have decided I will start treatment asap. I am back at the clinic next Thursday so could start it as early as then.

My ex partner who I had slept with a few times prior to diagnosis has come back all clear, which I am obviously delighted about.

Again, Id also like to thank everyone for their kind words.

Best Regards,

Alan
 
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Firstly, I want to offer as much sympathy/encouragement as is possible, for some random person you don't know on the internet. Having read through all the posts it sounds like you're doing all the right things. :smile: Very glad to hear your ex is in the clear, since that's one less thing for you to worry about.

Sure, HIV isn't technically a ticket to death anymore but, it sure is going to scare people from having sex with you.

I wanted to chime in, in regards to this. It's depressingly true. There is a LOT of fear and discrimination in regards to STD and STI. I was diagnosed with an incurable one in 2009. It was unbelievably difficult to make the phone calls I had to, to each of my past partners. I've had to deal with seemingly making great connections with people I've gone on dates with, and then never hearing a word from them again after I disclosed. I would never knowingly put a person at risk and I'm a firm believer in safe sex. Be strong and try not to blame yourself overly much. It has been nearly 3 years now since I got my diagnosis and I'm still struggling with the sense of shame, feeling dirty, etc. Best of luck and health to you.

P.S. Before anyone questions me in regards to the safe sex comment and then having an STD/STI. I was fluid-bonded with a partner (no condoms no dental dams etc) because of being in a closed relationship. Unfortunately, that doesn't help you any if your partner cheats on you without using protection and then sexually abuses you afterwards.
 
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vincenimes

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Since i'm a medical student, just add my two cent,
Today, if you can take your medecine all the days ( which means, not having too much side effect), and have a healthy live, you will no die of it, viral load will be indetectable ( but take your medecine nevertheless!!).
Eventually, you'll find a lover, know that: sex is not forbidden, but even if he is infected, use a condom, know equally that if you have an indetectable viral load, take your medecine, and some other condition, some scientisct, like in switzerland, judge that you are not contagious ( take a condome nevertheless we never know and there is not only Hiv).
Have a good life and wait, a vaccin will surely come one day :)