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Author Topic: HIV+ and ITP  (Read 3946 times)

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Offline what a life

  • Member
  • Posts: 31
HIV+ and ITP
« on: January 09, 2008, 11:19:22 PM »
Just over 3 months ago I tested positive for hiv and itp. The hiv was find because the doctors could not figure out the itp. I live a clean lifestyle and I have had two girlfriends in the last 5 years. I have only been with the two girls in the last two years also. My present girlfriend thank god has tested neg for hiv (always safe sex) and has been very supportive.

My Problem ITP the doctors can not get my platelets up. They have been 150,000 after IVIG but soon after they drop to 25,000.  I have IVIG, 80mg perisone and still the numbers drop. The Doctors very seem to talk to each other. I have three different doctors A GP, HIV, and ITP They wanted to give me a treatment that kills white bloodcells witch I can not afford and now they want to give me a treatment that kills redblood cells. I have been taken Sativa, trudrda, and bactrim for the last three months with some success with my numbers. Side effects are nasty and the side effects of the prodisone are nasty. I don't know were one starts and the other begins. My counts started v=180,000 and t-cell 48 after 40 days of meds v =50,000 and t-cell went up to 68. This this my fear or treatment of ITP and killing white blood cells. My spelling is not great but I don't want to have all my notes laying all over my desk at work.

Is their anyone who has beat this ITP or has a good understanding of it? I don't know what to do. I'm scared depressed and feel most doctors just see me as a number.
I need help from people how understand. Thank you
I keep waiting to wake up from this dream. Why me? The past is history, Tomorrow is unknown and today is the present "a gift"

Offline HollyStar

  • Member
  • Posts: 344
Re: HIV+ and ITP
« Reply #1 on: January 10, 2008, 02:04:31 AM »
Hi there,

I'm sorry to hear about your diagnosis. I really do hope that things will get better for you. I found an article on ITP through google. I'll paste the link below. The article lists several treatment options that maybe you and your doctors can discuss. I hope things work out.

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura
Diagnosed  July 28th 2003

'I don't want to get to the end of my life and find that I just lived the length of it. I want to have lived the width of it as well.' -Diande Ackerman

'Why not go out on a limb? Isn't that where the fruit is?' -Frank Scully

'If your ship doesn't come, swim out to it.' - Jonathan Winters

Offline what a life

  • Member
  • Posts: 31
Re: HIV+ and ITP
« Reply #2 on: January 10, 2008, 06:13:47 AM »
I have gone over really all of the different types of treatments and most are are not treatments they are temp. fixes in hopes the body corrects itself. The HIV meds I take are really suppose to make ITP in an issues but they have and that is why this is so scary. They wanted to try a drug that would kill out my white blood cells as if I had any to lose. ( i understand they come back but the thought makes my stomach turn to knots) The doctors are suppose to talk with each other about my treatment but I know they don't. My HIV has be amazing in helping me and being supportive but is not her field of expertise, so my doctor does he can. The next treatment they have offered kills my red blood cells witch I am fine with numbers.
I have found many webpages about HIV and ITP but never have I gotten to speak or write to someone who has go though this. I am suppose to go this Friday the 11th but I'm not sure I am ready for this transfusion before meeting some people who deal withe the same issues.
Thank you for all those who have helped.
I keep waiting to wake up from this dream. Why me? The past is history, Tomorrow is unknown and today is the present "a gift"

Offline what a life

  • Member
  • Posts: 31
Re: HIV+ and ITP
« Reply #3 on: January 10, 2008, 06:16:06 AM »
Sorry first line the The HIV meds have not helped. I wrote helped
I keep waiting to wake up from this dream. Why me? The past is history, Tomorrow is unknown and today is the present "a gift"

Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: HIV+ and ITP
« Reply #4 on: January 10, 2008, 04:05:51 PM »
Hey What a life,

Sorry to hear you're having such a hard time with this. I don't know much about ITP except it seems to affect between 30 and 40 percent of people with HIV.

I will see what I can research for you.

Hang in there.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline what a life

  • Member
  • Posts: 31
Re: HIV+ and ITP
« Reply #5 on: January 10, 2008, 11:23:34 PM »
thanks. I'm going o a "blood" doctor Friday to find out about some  of the other treatments. I will post what I find out.
I keep waiting to wake up from this dream. Why me? The past is history, Tomorrow is unknown and today is the present "a gift"

Offline what a life

  • Member
  • Posts: 31
Re: HIV+ and ITP
« Reply #6 on: January 12, 2008, 12:00:58 AM »
I went to the "Blood" Doctor today and saw a new Doctor. That's what I wanted. The first Doctor just didn't seem to have it going on even though the Pratice is highly regardred. The new Doctor talk to me not at me and basically told me I will be dealing with ITP until I get my t-cell and viral count better. I'm on truvada & sustiva with some success but it has only been 60 days. I go back to my ID Doctor on March 5th and I hope the numbers are up. I am happy the ID doctor is so helpful and understanding. So I have some hope. The meds I take at first just gave me crazy dreams but after a month depression really started to effect me. Still I don't know if its the meds or all this new news I am dealing with. I'm sure at least both it not one.

I am still looking for someone who has dealt with ITP and HIV really AIDS because my numbers or so low (68 t- cell) and has had success with beating the ITP or at least getting it under control. The ITP and the treatments for it scare the hell out of me. So any help from personal experience would be great.
Thank you to all that have taking the time to read this.
I keep waiting to wake up from this dream. Why me? The past is history, Tomorrow is unknown and today is the present "a gift"

Offline Mike2008

  • Member
  • Posts: 76
Re: HIV+ and ITP
« Reply #7 on: January 24, 2008, 11:18:50 AM »
PM'd you.
4-27-07  cd4 490  vl 1857
6-28-07  cd4 418  vl 993
started Atripla 9-17-07
10-9-07  cd4 502  vl,<75
1-15-08   cd4 473 vl< 75
blood platlets 31-26-79-20 -0-63-109

 


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