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Author Topic: Hi fellow HIV people!  (Read 1287 times)

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Offline My secret

  • member
  • Posts: 2
Hi fellow HIV people!
« on: November 18, 2013, 08:51:27 AM »
 Hiya, just wanted to say Hi to everyone and hope you're all well and taking your meds like clock work!

Lived with HIV for 10 years which then progressed into Aids and was taken very poorly in hospital when it was then diagnosed. A big shock as you could imagine and with Hiv being known as a death sentence and more so aids I thought I was going to die. Was terrifying but I knew I had to keep a positive mind otherwise I may as well of been dead. Luckily I had a very supporting family around me which really helped. I had a CD4 of 11 and my viral load was in the 20,000's! A year on my cd4 is up to 300 and I am undetectable. I take my medication every day, I have never missed a day because they are keeping me alive!

My close family and friends know my secret but I choose to keep it from anyone else. People are not fully aware of how far treatment has come and they are not educated enough on it which I think is so wrong. People are so scared of the word HIV and especially Aids but they shouldn't be. My personal opinion is that it's no big deal, I don't share needles nor do I go around having unprotected sex so I  no danger to anyone. The only way my life has changed is that I have to take tablets at the same time every day and I want to keep myself healthier but that's it! Luckily I have not suffered from depression because of it but I can imagine some people do and I would really like to help worried people.

If anyone is suffering or is finding it tough please feel free to get in touch with me, i would be more that happy to help.

Love me x

Offline uncertain

  • Member
  • Posts: 27
  • Trying to find my way
Re: Hi fellow HIV people!
« Reply #1 on: November 18, 2013, 09:02:06 AM »
I just found out im poz, most of my friends can not know because of my job and where i live, I dont feel much like living, but of course I am taking the medicine but the medicine has just sapped my energy, I was diagnosed in September and had a horrible seroconversion in hospital and the pills after a month have made me feel worse but the docs at the national euro healthcare say i have to deal with it and the side effects will go away, but seriously I can't sit down anymore because my ass hurts so much and my muscles hurt so much and only two monhts on truvada isentress. I dropped the prezista and norvir.  I am so tired all the time it makes it hard to get up and I do try and go for walks, I go for my blood draw in 2 weeks and maybe they will know more,  Jeff.
The candle that burns twice as bright burns half as long....

Offline My secret

  • member
  • Posts: 2
Re: Hi fellow HIV people!
« Reply #2 on: November 18, 2013, 09:30:19 AM »
Hi Uncertain

Do you have family you can tell? When were you diagnosed? You are not alone with this remember. I am on the same medication, fortunately with no side effects apart from vivid dreams but that's something ican live with. What side effects are you having and how long have you been takin them?

Offline mitch777

  • Member
  • Posts: 3,603
Re: Hi fellow HIV people!
« Reply #3 on: November 18, 2013, 09:33:12 AM »
My Secret,

Sounds like you are on the right track.
This is a great place to lend a supporting voice.
Welcome aboard!

m.
32 years hiv+ (oct. 2013) with a curtsy.

Offline Theyer

  • Member
  • Posts: 2,543
  • Current ambition. Walk the Dog .
Re: Hi fellow HIV people!
« Reply #4 on: November 18, 2013, 10:14:34 AM »
Hi My ,

Welcome to the forum

michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline uncertain

  • Member
  • Posts: 27
  • Trying to find my way
Re: Hi fellow HIV people!
« Reply #5 on: November 18, 2013, 11:31:44 AM »
I was diagnoses during seroconversion September 6, had a viral load of 11,000,000 which went down to 1000 in 3 weeks or 4, don't recall and now doing the next draw December 4th, and expect to be undetectable, my issues with sides, sweating weakness, complete fatigue, insomnia, started at about 4 to 5 weeks on meds, now the Dr. said it was immune reconstruction and the extreme exhaustion, chills, sweats... have all gone away, but the pain in my butt when I sit on hard surfaces (never had that before, ever) and shoulder pain, sometimes tingling in fingers or feet, not painful in fingers or feet, the left shoulder and ass hurt and my middle spinal bone, goes on an off sore, I have spent all of my time not working in bed, and was a 5 time a week gym guy until beginning of august, so perhaps in my early 40s my body is also having issues because I have been bed ridden, not sure.... want to try to go back to gym, but when I have a good day and I start to act like myself, i pay for it with 2 horrendous days of exhaustion.  My test was still negative (western blot) when I started the truvada, isentress, prezista 600 twice a day and norvir, I really want to just take isentress and maybe its the truvada that is causing bone muscle pain.... I have two weeks to wait.... the Dr. says it will go away, but it came on after over a month and although when in bed all day it doesn't hurt as much by middle week while working, I am EXHAUSTED, my pos friends are shocked by what I'm going through as they didn't have the sides.  I have not had any crazy mental stuff, which I am happy about and also did not want to go on Atripla but my doc said he wasn't putting me on atripla.  So I would love to maybe try two integrase inhibitors, I am torn between "being lucky" because they caught this so early and if I stay on my meds for 2 years I could "possibly" go off them since I started so early.  However my cd4 cells were above 500 when I was diagnosed and went down to 400, so maybe they should have waited for my viral load to come down.  Honestly, I'd gladly give up almost anything to have my energy back and pain gone.... but I am still taking those damn pills religiously, sometimes an hour off but the most important thing is to take them.  Thanks to you all for the comments.
The candle that burns twice as bright burns half as long....

Offline EUINAU

  • Member
  • Posts: 42
  • New to This
Re: Hi fellow HIV people!
« Reply #6 on: November 19, 2013, 04:30:22 PM »
Hi uncertain, I just wanted to say that like you I was diagnosed while in seroconversion mid May and I started Isentress Truvada and never had real side effects except for a bit of gas in first couple of weeks. My VL was in millions and CD4 about 330 and after couple of months about 570 and down to 78VL and now 4 months later UD and CD4 same. Hope you'll feel better soon.

Offline pittman

  • Member
  • Posts: 228
Re: Hi fellow HIV people!
« Reply #7 on: November 19, 2013, 09:39:27 PM »
. . . . the Dr. said it was immune reconstruction and the extreme exhaustion, chills, sweats... have all gone away, but the pain in my butt when I sit on hard surfaces (never had that before, ever) and shoulder pain, sometimes tingling in fingers or feet, not painful in fingers or feet, the left shoulder and ass hurt and my middle spinal bone, goes on an off sore . . . .

I have to wonder at the thought that you were going through immune reconstruction given your relatively intact immune system based on your cd4 numbers. Typically that happens for those that didn't catch it early.  Your symptoms (flu like) can happen during seroconversion, though after 4-5 weeks on meds would seem to make that less likely.  Could you have had an actual flu as well?

In anycase, don't assume all symptoms you experience henceforth are HIV related. You will get all the usual aches, pains and various ailments anyone could get, especially as you get older. Be grateful, the alternative is not still being here to experience them!  :)

Offline uncertain

  • Member
  • Posts: 27
  • Trying to find my way
Re: Hi fellow HIV people!
« Reply #8 on: November 21, 2013, 11:04:19 AM »
Thanks, no they said as my viral load was 11,000,000 and I do suffer from Chronic Fatigue Syndrome, that (in my mind) may have rared its ugly head... as the body fights a lot of old infections.  Either way, I feel better now.  I did start back at gym.  Miss P. suggested against it, BUT IT DID, seem to help my muscles, I am in less pain and I have ALWAYS had to work out to keep even  just a bit of muscle on my arms chest (not stomach, fat came easy) so perhaps, the muscle thinning was adding to it, anyway..... thank you all, and I will keep you posted, I decided to stick it out until my next appointment in early Decembrer.... I do feel very tired by the end of the week but I guess I am still recovering and my bed will be my friend throughout the weekend until probably xmas.
The candle that burns twice as bright burns half as long....

 


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