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Pages: 1

Reged: 06/01/08
Posts: 13
Loc: London, UK
Living well with HIV
      #239635 - 06/01/08 09:50 PM

I am new to these messageboards and happened to venture on here as I am due to start my meds in the next week or so. Its something that is worrying me a little but I know friends who have been at this milestone before and look back and wonder what all the fuss was about.

I am reading lots of stories here that are unfortunately depressing and negative and I know that this is not a true reflection of living with HIV for some people. Okay I am not saying it always easy but I am confident that there are people out there who live with the virus day to day and for a lot of the time it is not an issue. I say this because I am fortunate to have friends that are positive and it is not really a big issue for them. They live their lives and HIV is just a small fraction of the the person that they are.

I personally have had one or two tough periods over the past 2 years since finding out but these were more mentally than physical and health anxiety was something I had well before HIV came along and now common sense dominates my thoughts. I have had oral thrush and a few other minor problems and it does get you down but you take advice from the experts, you get medication and you move on.

I really hope this doesnt read like a 'look at me, I'm managing so should you' thread. It can be frightening at times but life came with no promises and not surprisingly some people find out they are positive and they cope and cope very well.. I hope one or two people could share there living well with HIV stories and give hope and inspiration to others that it may not be the big death sentence they fear and that some of us lead a very normal and sometimes boring and uneventful lifes regardless of our status. Once my meds settle in I hope I will have better things to do than be on HIV messageboards.

We are fortunate to live in a time when for the majority the medication is avaliable and it works. And there are support groups and other safety nets for people that may need them. I am greatful not to have been living with HIV in the 80's when the outlook was much more darker and peple sometimes really were alone.

Maybe once I have started my meds I will come back and tell you I am living in hell! LOL. Hopefully not.

Take care and hope one or 2 of you post a reply.

London Lad

Edited by LondonLad (06/01/08 10:07 PM)

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Reged: 11/19/05
Posts: 1148
Loc: Adelaide, Australia
Re: Living well with HIV new
      #239691 - 06/04/08 01:52 AM


Try to read the inspirational stories section under the living tab (on this website). I am sure those stories coupled with hands on experience of folks on this forum would be helpful and give answers to your questions.

Good luck

Take Care

God Bless you

Stay Well

Love Ravi

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Reged: 06/03/08
Posts: 10
Re: Living well with HIV new
      #239703 - 06/04/08 11:04 AM

Inspiring post. I was wondering is your experience common? Is there such a thing as common when it comes to HIV. Is two years about right from time of testing positive to starting your meds? What are the determining factors for having to start medication?

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Reged: 03/02/06
Posts: 276
Loc: rural upstate NY
Re: Living well with HIV new
      #239717 - 06/04/08 10:49 PM

It has been my understanding that the CDC recommendation has changed, and that while they used to recommend starting meds when your CD4 went below 250, now it is when it's below 350. Symptoms and opportunistic infections are also important considerations.

For myself, I was exposed in January 2006, test positive 3/14/06, and started meds nearly 2 years later, the end of January of this year. My CD4 fell pretty steadily, from 537 at time of diagnosis, to 400, to 350, to 222 in December. I have been on meds for 4 full months, and my CD4 is up to 505, and my viral load is now undetectable. I felt pretty crappy back in January, but feel pretty good now. I am trying to take things one day at a time.

Good luck, and I hope this helps.


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Reged: 06/05/08
Posts: 5
Loc: Southern, USA
Re: Living well with HIV new
      #239732 - 06/05/08 10:20 PM

I am happy that you are living well with HIV. I have to say that whatever you can do to better with your health please do it! After two yrs. of HIV poZ atarting meds seems kind of soon. But again nobody sitatuion is the same, may I recommmend juicing fruit and veggies, this will be a great poz in your life for sure. You know you should not look at being in these messagebords as something people that are bored and negitive do. I am a part-time student, have a full-time job, a mother of two, and is HIV negitive, but yet I still sit time aside for the benefit of being able to help even if that is emotionally those who needs it. It don't matter to me that I am negitive and most here are positive we all a human beings with a need for belonging and love and that is what I intend on giving to everyone I come across on this message bord, because I am no different I have put myself in the same predictuments and I have been in situation that were out of my control so rather you believe it or not can relate. I will be a person living negitive that understands and will be a non-judgeing friend.Thanks.

Love Yourself, Love Your Life It Was Given To You For Free...No Matter What Love.

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Reged: 02/19/07
Posts: 541
Re: Living well with HIV new
      #239740 - 06/06/08 09:29 AM

Mrs. although I can appreciate that you are wanting to relate and to others and help others, but the statement "after two years of HIV poz starting meds seems kind of soon" is very ignorant. I am not throwing stones, but I will tell you that you lack the education and knowledge that us positive people have learned to acquire and possess. Everyone reacts differently to being HIV positve. Some people have to go on meds right away others never have to go on meds they are called long term non progressors. However, I am one of the ones that had to start taking medications as soon as I tested positive. I do understand that you are attempting to be there emotionally for us folks, and will thank you for that. I will ask, unless you are living with this disease or are directly affected by this disease that you become knowledgable about HIV (perhaps as a medical professional) and the effects it has on people before offereing advice on HIV. They call this forum living with HIV, which you are not. Once a persons CD4 hit a certain number (and I will have to research that number to see what the current guidlines are I think they are at 350 now) then that is when it is recommended that you start HAART. It is really important for anyone positive to have a good relationship with their doctor, and be able to ask questions regarding meds. Just so you know, I found out I was positive in 1/06, but 3/06 I was taking meds and have been ever since. My numbers are currently CD4 466, 28% and I am undetectable. Take care, D

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Reged: 01/20/07
Posts: 1186
Re: Living well with HIV new
      #239749 - 06/06/08 04:11 PM

From your profile...

"I will not judge you for the inperfect that we face and the sins that we are forced to carry. Sometimes it is in our control and sometimes it is out of our control, but we need keep in mind that we are ALL affected by sin... "

I'm so glad you absolve us of our sins. Frankly I've never thought that I became infected as a punishment for sinning.

That's not to say that I became infected through no fault of my own. It was because of my choices that I live with HIV.

Part of life lessons....yes. Punishment for

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Reged: 01/04/08
Posts: 105
Loc: San Diego, CA
Re: Living well with HIV new
      #239764 - 06/07/08 05:08 PM

Hey LLad...I waited too long to be tested (51 tcells, 500K VL), so i really had no choice but to start meds right away. I did "beat myself up" over the fact i didn't find out sooner and take action to regain my health, even though i felt fine and never had even a cold but i guess on paper i was in a dire situation. I know i can't change what happened, i can change the future somewhat and all that "shoulding on myself" is just plain unhealthy and negative. So i guess most of the problems i have associated with HIV are mental (guilt), about being unsafe and not testing earlier. This all relates to your post, i promise... I don't feel that starting meds is a big deal at all and in fact i would of started them much earlier b4 my tcells were so low, had i of known i was positive. doctors tell me that it's harder and takes more time for the body to gain tcells, on meds, when it's so depleted.

All that aside, I feel a little bit empowered due to the fact that i only had 51 and never got sick or even felt bad I know it sounds strange but that is one thing that picks me up when i'm feeling low, the ole "glass half full" or test tube in our world, analogy. I mean I tell myself that no matter what my doctors say about my progress, i have a strong constitution to not of fallen ill or felt bad with only 30 cells (they say it's just normal, but i think it's miraculous to go from 51cells to 30cells just b4 therapy to 250 after a year of therapy, especially since my doctor warned me that when a person is so depleted of tcells the progress is painfully slow where on average people gain 100 cells after the first year on therapy and i gained almost that - 76- the first month). I would like to hear about people who were (on paper) so "dire" but never got sick, but i guess they would make for a boring read. You hear so many stories of people who suffered so many different maladies and came so close to death's door. Don't get me wrong, these stories are inspiring but also very depressing for me personally. When first diagnosed (a year ago) and to a degree, even today i find myself worrying about the future and my health, even though i've been undetectable and in general great health for several months now. It's reassuring to know that there are other people who, like me, have full-blown AIDS, but never really came close to dying, non-clinically anyhow. Doctors and medical staff are cautious to give praise it seems.

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Reged: 06/12/08
Posts: 1
Loc: texas
Re: Living well with HIV new
      #239890 - 06/12/08 04:10 PM

Living well for me has been the determnation to never give up on living. I tested positive in April of 91 while in a drug treatment facility. Out of the 250 people there I was the only one to accept the testing for H.IV. Now I am not saying my struggle with this diease has been pretty. But the struggles I had before testing positive where already there. For me I did not have to start meds for nearly 11 yrs after testing positive. And still my viral load since that day has ranged from over 750k to where it is now undetectable. The meds take a toll on each person differently and I have never had any adverse side effects from them at anytime. I believe it is because I refuse to let this diesae define who i am as a person. And to the fact that I have stayed pretty much away from alcohol and drugs since testing positive. There has been the occasional relapse but that was due to relationship issues not my handling of this diease. Alcohol and cocaine break down the cell walls of our bodies and allow the viruse to spread in the body much easier. So get plenty of exercise have fun and pick up some good hobbies that you enjoy. For me it has been Golf,Bowling,Dirtbike riding, Boating and any other physical activity I can get into. Also pray.


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Reged: 03/22/08
Posts: 79
Re: Living well with HIV new
      #239903 - 06/12/08 06:38 PM

While it is true that some people do not have to start taking Meds right away, there are a lot of us that do. My partner was diagnosed in December 2006, from what we can figure he had been positive for approx 2 years. I tested Negative in January 2007 and by June 2007 (wow it has almost been a year) I was positive. Normally the CD4 count drops when first affected but will bounce back to near normal levels with in a few months. I underwent blood work every month for the next 6 months so the Dr could have a clear picture of what the numbers were doing. My CD4 count did not recover and I needed to start Meds. A more accurate number is the percentage of CD4 to CD8 cells They stayed at close to 11% If I remember correctly if someones percentage is below 14% they recommend starting Meds. After starting Meds in December 2007 my cd4 has increase to 535 and the percentage is 24% and the viral load has dropped from 100,000 to 80. This has not been without difficulty as it would appear I have a mild allergy to the Meds and need to take an allergy medication as well as the HIV meds. In comparison my partner has a viral load of 4500 and a cd4 of 750. He is as healthy as can be. Everyone reacts differently to having the HIV virus, I have also seen people die, yes even today with the advancement in medicine, because their body was so overwhelmed with the virus that their body did not create the antibodies that the labs use to test for HIV. (went from being health to dead in 6 months)

The only advise I can give is
Please do not preach, there are many different ways to catch this disease and not all of them involve a form of sin.
And THANK YOU for caring enough to want to help.


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Reged: 06/19/08
Posts: 25
Re: Living well with HIV new
      #240037 - 06/20/08 12:20 AM

LondonLad, you are what we call in East Texas "preaching to the choir" (e.g., they're already in church and can't leave yet), it's a good thing.
Nobody's trip down the HIV Road is exactly the same, no different than Life in General so there you are. If you've gotten to this point --and found out you have a bug-- if you're over the age of fifteen you've already built some of the weapons you need to get along with your status.
Medication? Yeah, had a few including some of the now prehistoric things the size of quarters that tasted like soap and had to be taken at 6am without food until I discovered I could drink coffee with them. These days (modern life) I was taking a single combo pill a day until 12 mos. ago when my doc said my levels were good enough I should simply not take more (the virus loves to mimic your meds so they don't work) until I medically needed them.

I went to a shrink, a business shrink (psychiatrist) a couple of years after my diagnosis in 1989 --yes, that is not a typo-- because I was going on meds. I was depressed and told him I needed a script for telling my friends and play-children that I was going to die. He cured me in two sessions by (a) reminding me how much I enjoy life and my family, and (b) telling me stories about countless bounders like myself who went to Paris or Ibiza or Key West, spent all their money in the Last Big Party and then... lived on and on and on and on, but much poorer.
I listened, went out and got a 20-year mortgage, renovated a house, just watched my first play-grandchild pop out, worry now more about cholesterol and gray hair.
Live your life; plan for the future, believe me, you'll be glad you did when it jumps up and hits you in the face. A friend of mine just told me they'd had a recurrence of a small cancer; I was morose. "Relax" she said, "remember it's been twenty years since I had that last one; fix this and another twenty years I'll be eighty!" She has the right perspective: assume you'll grow older and plan some stops along the way. Best wishes from Texas

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Reged: 06/01/08
Posts: 13
Loc: London, UK
Re: Living well with HIV new
      #240081 - 06/22/08 08:11 PM

Well I am back and after my holiday started my meds. Sustiva and Truvada. Had 2 or 3 days a little wobbly and distant but that has all now passed and feeling very well and full of energy.
Okay tiny bit of difficulty getting off to sleep at night but thats thinking about work and stuff and my stomach is upset but I can handle that.
Am taking the tablets about 10pm give or take 15 mins and so far so good.
I did it! Feels great and was back in the gym yesterday so can safely say everything is back to how it was before the need for meds started. Am looking forward and to the future now ... hopefully my bloods will show as good as I feel and the tests on my liver ... fingercrossed ...
We can do this people. We are not alone and we can survive like my doctor joked ... like normal people ...
Plan for all those years to come as the meds work and we have got a future to look forward to.
Now ... I will have a read around and see what you have written
Take care

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Reged: 06/01/08
Posts: 13
Loc: London, UK
Re: Living well with HIV new
      #240083 - 06/22/08 08:23 PM

Preaching to the choir or the converted?

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