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Author Topic: Still not in terms with the news of being effected.  (Read 5841 times)

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Offline Buffalosad

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  • Posts: 11
Still not in terms with the news of being effected.
« on: March 22, 2011, 08:55:53 PM »
Hi there, I was kind of recently diagnosed -...well seems like yesterday in some way, but yet so far away at the same point. I was diagnosed in August, got my inital count in November. It was the longest time, and took longer for the "official positive reading".  My counts cd4  492, vl 27335.  I understand that these numbers look good, and I was only surprised by the vl. I was hoping for it to be lower, but at that time, we did nothing cuz the numbers were still good. 
We waited a short time and took more blood, its sort of being attacked by a vampire with all the tubes of blood they take.  Waited for results, which at the time seemed like an eternity. Due to weather issues my apt was cancelled the beginning of Feb, due to big storm heading.  My numbers than cd4: 439 and vl 80,891.  The big increase in vl hit me like a brick. I was devasted and felt beaten.
Talked about treatment and the different kinds of meds and the side effects. After discussing the options with my doc, whom by the way I am very comfortable and really love to pieces, decided to take blood and get the results in a week and she will call me with the results and if the vl was above 75,000. Meds will be started.  I have mixed emotions about this.  I have went to several support groups and had a hope that it would be years b4 meds would come into the picture. But than again...starting the meds was also me doing something about it and my way to fight back, cuz obviously my body was not helping me any on this point.
I got my results back and it jump up to 121,000 so meds have been started. I am still very sad and feel how did this happen to me,? I am talking to a counselor and it just takes time to feel good about yourself again, so that is what she says. I hope this happens soon. I have started the reyataz, Novir and truvada. I go tomorrow for blood work and the only side effects I have is more insomia and more periods of nausea, just a small price to pay I figure for getting myself back on track.
Thanks for listening.

Offline PrettyHeart

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Re: Still not in terms with the news of being effected.
« Reply #1 on: March 22, 2011, 10:48:51 PM »
Sorry to hear about what you are going through. I wish you the best.

I'm not one to give much advice as I was just diagnosed in December and my numbers are good but I am a bit afraid of the next tests. For some reason I'm not sure they are going to be as great as I've been under a great deal of stress. I just thought I would reply back so you didn't have to feel that no one is here.

Offline edvaardt

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Re: Still not in terms with the news of being effected.
« Reply #2 on: March 23, 2011, 12:35:35 AM »
Hi I've been positive for nearly 26 years, I got my diagnosis when there was no meds or viral load test.
There are six rules to surviving HIV
1 Get yourself a good HIV doc
2 Go to your docs appointments don't miss any blood work
3 When the time is right start meds (the sooner the better) Very important take your drugs correctly same time every day.
4 Avoid infections like measles mumps or even food poisoning you can't avoid colds and flu (get a flu shot every year)
5 Life style changes - if you smoke try and quit - if you drink or take recreational drugs don't do it to excess try and get some physical exercise.
6 Never ever get re-infected with another strain of HIV


Starting meds is not a bad thing it's a good thing. Once you start you are actively killing the virus and the immune system recovers. Side effects are short term - gone within eight weeks.

Now the difficult bit is getting your own head around the fact you have a virus, you don't have to tell everyone ask yourself - why am I telling this person now - What am I going to get out of it and what are they going to get out it and only if you can truly answer the question positively then go ahead and tell them. Just because you don't tell them now doesn't mean you can't tell them in the future. An example I told younger brother in 1986 and older brother in 2007. Older brother asked me why I didn't tell him sooner, my reply was - what would you have done for me?
Something else to remember (don't get transfixed on numbers) Your Cd4 and viral load will go up and down like a    yo-yo
Another example my lowest cd4 was 150 and highest 1200 my last but one was 879 and last one 386 next one will be near a 1000 or not. If your viral load is undetectable you are getting the best from your meds.

With the drugs we have today's life expectancy is near normal if not normal what ever that mean. if you follow the rules above - You will survive HIV
I'm a HIV dinosaur Life is too short to waste  HIV is a virus, it doesn't define you as a person you are still the same you were before you were tested.   
If anyone whats to e-mail please don't hesitate


Offline hope_for_a_cure

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Re: Still not in terms with the news of being effected.
« Reply #3 on: March 23, 2011, 07:18:57 AM »
I got my results back and it jump up to 121,000 so meds have been started. I am still very sad and feel how did this happen to me,?

Sometimes bad things happen to good people.  My immediate advice would be: Dont beat yourself up over the question of how you got it.  The past can not be changed.  The fact that you are now on medication is actually good news because your VL should start heading back down.  It is a lot to deal with mentally and we all are 'thrown for a loop' when we are diagnosed with this virus.  

It is normal to feel the way you do at this time (I felt the same way).  I focused on the things that I could control (i.e., adherence to meds, proper nourishment/rest, and generally following healthy living recommendations).  We all have to find what works for us to keep us moving forward (in a good way).  

Best of luck to you!  


Offline thelovedones

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  • Posts: 58
Re: Still not in terms with the news of being effected.
« Reply #4 on: March 23, 2011, 10:32:46 AM »
I'm really sorry this happened to you but I'm very glad that you found yourself strong enough to write about it here in the forum. Welcome.

I was diagnosed early this month with bad numbers (worse than yours) and I was scared out of my mind. Partly because I don't look or feel any different than I ever have. I thought to myself "sure I took chances, but how could I have this???" Then I had to wait for the genotype test results before I could start meds and that was making me freak out about what was going to happen while I waited. I had all these horrible fantasies about dropping dead on the street before I could get access to medication. I was a mess and my head was my worst enemy. --- My only advice to you is when your thoughts get too much for you, take a deep breath and reach out to someone you love who you can talk to and who can set you straight. Focus on what is within your power to handle (work out if you're up to it, eat right, follow your doc's advice) and read the forum posts. I can't emphasize enough how helpful these forums have been for me...not just for information about the virus and the meds but hearing about how people get through it all. It's a lot to handle but you can do it. You WILL do it. 

Things will get better for you.

Good luck
2/26/11 Diagnosis at State Dept of Health (anonymous testing center)
2/28/11 Oral Swab Positive diagnosis and confirmatory blood test taken
3/4/11 Confirmed HIV Positive diagnosis; blood drawn for T-cell count, VL, and medical profile
3/11/11 VL: 192765, T-cell: 195
3/16/11 Prescribed Atripla and took Pill 1
4/29/11 - VL: 413, T-cell: 311
6/28/11 - VL: UNDETECTABLE, T-Cell: 437

"I've seen this happen in other people's lives and now it's happening in mine"

Offline Buffalosad

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  • Posts: 11
Re: Still not in terms with the news of being effected.
« Reply #5 on: March 23, 2011, 07:20:20 PM »
First off, I am overwhelmed with all the responses so quick. It really does make you feel like your not alone in this. I think mentally that is the hardest thing for me, I don't feel like I have any support from anyone. Which makes it most difficult. But maybe its me not wanting to open up completely to them and appear strong like I have always been.  I am not one to show my emotions easily and much easier for me to just in a lack for something better "to cry when alone and in bed". I know its not the best thing to do, but right now that is where I am.  I only have told a handful of people, and feel that I need to be stronger to be able to tell anyone else, without breaking down and crying.
PrettyHeart...thank you very much for being the first one to respond so I wouldn't feel all alone still...that means allot to me.
Edvaardt:  Thank you for your words of wisdom, and am glad you are doing well and not to sound mean, but have survived this for 26 years. It gives me great hope that I will be able to see my kids marry and see my grandkids when the time comes.  Kudos
hope_for_a_cure: I am still in that stage of all these questions, I know its not healthy, but every once in awhile I go there, not all the time.  I am able to go to work and have some recreational time, but if I have to much time on my hands or should I say time for my mind to wonder I start to ask myself all the questions. When was I really infected?  Who infected me? Why did I let this happen to me? Why me?
thelovedones: I am so sorry to hear about your story. It really breaks my heart and I remember the way I felt when I initially found out and those where the worst times. I feel that if I knew about this site sooner I would of reached out here, just I feel its easy to type on computer and not "talk about it". I hope the best for you and please deep in touch and hope the best for you.

Offline Buffalosad

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  • Posts: 11
Re: Still not in terms with the news of being effected.
« Reply #6 on: April 12, 2011, 09:49:12 PM »
Just wanted to update everyone, I am going tomorrow for my first results from after starting meds. I couldnt come to grips of calling and getting the results over the phone, last time it didnt work out so well for me, and I was very depressed. I am finally starting to feel better about myself and the entire "being positive" .  I am not sure if this is longer or not compared to average, i am wondering if there is an average time that it takes people to come to terms with it. I am now able to want to do things besides hiding in my house after work. I went out with friends but sort of felt I wasnt really all there. I am now starting to work out again and feel overall better about myself. Not that I am in any means an expert and I do have periods of sadness and depression, I think that the worst is finally behind me, and maybe I can use this experience to make myself a better person.

Offline Sweet_C

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  • Posts: 200
Re: Still not in terms with the news of being effected.
« Reply #7 on: April 13, 2011, 10:18:32 PM »
I'm glad to hear you are doing so well!  I think you have a positive attitude and it's good that you're using this experience to improve yourself.  I took the same attitude when I found out.

To answer your question, I don't think there is an average amount of time to adjust.  It really depends on the person and the other stuff going on in that person's life.  For me, I think it was "easier" to adjust because I had found out that my mother had terminal cancer only days before I was diagnosed.   My mother's condition took up most of my mental energy, so I didn't have as much time to dwell on being HIV positive.  Also, seeing what she went through with cancer really made me thankful about the amazing treatments they have for HIV.  There are just no words for how devastating cancer is...  Also, I had my fiance and we pretty much found out together that we were infected.  Having someone to lean on for support made a huge difference for me.

Now that you're over the initial shock, you'll find that you'll have long stretches where you don't even think about the fact that you have HIV and when you do think about it, you can't believe that you have it.  Hang in there, you're doing great!
Tested positive on September 11, 2008

Offline Buffalosad

  • Member
  • Posts: 11
Re: Still not in terms with the news of being effected.
« Reply #8 on: April 18, 2011, 08:21:31 PM »
Got my blood results and really have been feeling much better.  My VL dropped down to 1736 after 2 weeks on meds.  I really feel like I am doing something about having HIV and makes me feel like I am taking back over my body. They took more blood on the 13 of April and hoping that I will hear that it is non detecable. I am religiously taking the meds in the morning with breakfast and feel inpower again. Almost like I did before knowing i had HIV, Not really sure how long I had it before I got the news. I am thinking that it way March of 2009. But not 100% sure.  Sometimes I try to figure it out, but not sure if its important or not.  I am now debating if I should call for my VL results or just wait til my next appointment. But that isnt until June 8th.  I am taking the Reyataz, Truvada, Norvir regiment.  I still feel nausous at times and cold, but not sure if that is more the weather than anything else.
Keep strong and talk to you all soon.  Thanks for all the words of encouragement and Hope everyone is doing well.
Sweet C: I am sorry to hear about your mom and hope she finds happiness, cancer is a horrible disease. I work at a cancer hospital and know to well about all the things that happen to a person. Hope that all is good and keep in touch.

Offline drewm

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  • Posts: 1,246
Re: Still not in terms with the news of being effected.
« Reply #9 on: April 19, 2011, 12:52:21 AM »
Welcome to the forums sorry you need to be here but glad you found us. I can relate to the nausea and insomnia, both are under control now for me, but it was a rough adjustment. Here's hoping for good numbers  :)

Hang in there

Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Buffalosad

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  • Posts: 11
Re: Still not in terms with the news of being effected.
« Reply #10 on: June 11, 2011, 09:22:43 AM »
Went to my appt, and all seems to be going good as plan. I am currently having no side effects from the meds and actually can see life going on. I have alot to think about and which direction should my life continue. My viral load went down to 800 on my last apt. They took more blood last week at the apt, and going to call to get numbers. I now have to go every 3 months which is a relief. I did make them my primary care doctor so of course if I get sick, I will have to call them and get a sick visit.
It has been about 9 months and feel like my life was on auto pilot and cant really recall alot that has happen in that period. Only the sad parts, well time to make good memories from this time forward and hope all is well. I really didnt think this day would come and I am so glad that it is hear.

Offline jacken

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  • Posts: 72
Re: Still not in terms with the news of being effected.
« Reply #11 on: June 11, 2011, 10:20:47 AM »
Buffalo, thanks for the update. I am happy for you and all my best!


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