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Author Topic: I always expected this call....  (Read 12777 times)

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Offline MarcoPoz

  • Member
  • Posts: 397
Re: I always expected this call....
« Reply #50 on: January 13, 2009, 10:58:42 AM »
Ahh...no matter what State, the Partner Services guidelines STILL say that PS is to be voluntary and non coercive--I guess that would go with asking them to blow ya' too ;-)

Offline pos2007

  • Member
  • Posts: 116
Re: I always expected this call....
« Reply #51 on: January 14, 2009, 11:10:01 PM »
Blixer, we both  tested  pos.  in 2007.  We also  live  in S.E.   Mo   and  haven't  heard  from  the state either  and  wouldn't   have  heard  from  the  county  if  we  hadn't   contacted  them after  giving  up   on  them.  They all  have  their heads  in  the sand   and  are  in  denial  down  here.  They  haven't  even  updated  the  number  of cases since 2002  I  understand.  Expect to  have  to sign  papers every  3  months  for the rest  of  your  life. People  come  by  and  give  us the  3rd degree and  and  make  us  sign a  whole  folder  of  papers every  3  months.   We  have  been  told  by  many we would be much  better  off  if  we  moved to St  Louis  or  Kansas City because  the programs  are 100%  better   in those 2  areas  ,  but  it  is  not  that easy.   We do  go  to Washington  University  for  our  care though and  it  is far superior  to  that   in S.E.  mo.  ,  Especially   considering that  we were  miss  diagnosed  for  years down  here and  no body ever suggested  or  gave  us an  HIV  test because we  "  had  none  of  the  normal  risk  factors";  e.g  white,   long  term  monogomus  marriage,   no   drug use,   but  it  does  seem  they  do  give  HIV  infected  blood down  here,  but  still  no  testing.   Expect  the  humility  to continue as we regularly get asked  if  we want  to  change  our story about  how we  may  have been  infected.    If  there was  any way  I  could  leave  this area I would ,  but  since we  have   ended up  going  from a very  comfortable  lifestyle   to  being  medicaid recipients  due to  this  disease and years  of many  S. E.  Missouri  Drs.   with their  head  in the sand,  I can't see  how  we  can  now.   Just  be  glad   you are  healthy and  didn't   have a viral  load  of 600,000 and  zero  cd4 and  near  death  before    a Dr. ever brought  up  the  idea  of  giving  you  and  HIV  test after going  to  Drs.  for   years  to  try to  find  out  why  our  health was  failing  and were were  having  so  many  complications ( Pneumonia,  Infections,  ,Thrush,  Shingles, Cancer) . We  have  found  out no aspect  of   our  private  life  is  private  any  more and   it  is invaded  upon all  the  time and we are  continually  reminded that we can  go  to  prison    for  having sex with  anyone  else  by  the public  health  locals.  I  am  sure  criminals  are treated  better.  The  health  care system  here  is  very  demeaning.   Good  luck  to  you.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline Blixer

  • Member
  • Posts: 712
Re: I always expected this call....
« Reply #52 on: January 15, 2009, 03:08:52 PM »
Thanks for sharing that information pos2007.  I was lucky that I had a very good doctor even though I was in Southeast MO.  I had very few symptoms, but she was very sharp.  I can't say my first experience in St. Louis with an HIV doctor was very good.  But now that I've found the Washington University ID clinic I'm in good hands and doing quite well.

I do know what you mean about this area of the state.  From the very beginning I sought out services in St. Louis because I did not want to deal with the backwardness of this area.  I was hoping that even my state contact would come through St. Louis.

I did have my meeting yesterday and it was a very low key meeting.  The "Disease Intervention Specialist" said she didn't have a clue how I fell through the cracks.  It seem to cast suspicion on the whole process though.   Luckily, my meeting was very different from your experience.  I didn't have to provide any personal information.  I had one form to sign that confirmed that I had received initial counseling and that I understood the Missouri disclosure law and that was it.  They do have my mailing address, but they don't have my residence address.  That would be easy enough to get, but overall it was kind of like "we have done what we are required to do.  Here is our card.  Call us if we can be of any assistance."  I'm lucky that I'm currently in a clinical trial and have good private insurance.

I know the disease does cause extreme financial burdens and can be very devastating.  The processes in place do make you feel like a second class citizen and is often very demeaning.  It seems that it is only after much effort and you hit rock bottom that you can really get much in the way of services.  I know there are some states with really good programs, but I don't feel Missouri is one of them.

Anyway, I'll be on the lookout for any signs of follow up to this.  Hopefully I'm done with them and can get back to my somewhat hectic life and keep a bit of privacy.

Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40


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