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Author Topic: CD4 dropping and Doctor questions  (Read 2233 times)

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Offline pos2007

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  • Posts: 116
CD4 dropping and Doctor questions
« on: January 21, 2009, 11:38:13 AM »
I  would  like  to   find  out  how  you  address falling  CD4  levels.  I  achieved  an  undetectable  viral  load  after  taking Atripla for 7   months   and  my  CD4   went  from  150  up  to  350,   but  now   has  dropped every month  till  now  it  is  just over  150.  My  Dr.  is   not  too  concerned,  says  it  happens,  but  now  I  am    having memory problems,  weakness,  sinus  infections,   etc,   like  I  had  before   I  was diagnosed.   How  can I  get  my  immunity  back  up?  I   Have  been pos.  for   around  15  years  but  didn't  find  out  till  2007.  Also  How  do  you get  a primary  care Physician  to  take  an  HIV  medicaid  recipient?  No-one  here wants  to  do  that.  All I  have  is  my   HIV  Dr.  mostly every  3  months.   I  can't  afford  to  move  to  the  big  city.  I   live  in  an  unfinished  house  that  was started  before I  got  sick  and  haven't  been  well  enough  to  complete it  and now can't afford  now to finish it  since  my  insurance  refuses  to  pay  any  bills  because  they claim "pre-existing  condition"  even  though they  never tested  my  blood  or  had any  exclusions  on   my   policy  when  it  was  purchased.  I  had  no  health  issues at  that  time.  
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Online Miss Philicia

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  • Posts: 24,066
  • celebrity poster, faker & poser
Re: CD4 dropping and Doctor questions
« Reply #1 on: January 21, 2009, 12:00:51 PM »
First, your doctor is correct.  As long as your VL is being suppressed that's the goal, and over time your cd4 should slowly rebound.  Some people experience more of a rebound than others, and the pace varies wildly.  There's basically no magic thing to do to change that fact.  Keep in mind that you began treatment at a low cd4 so that's a contributing factor -- you allowed your immune system to get rather damaged so repairing it will take longer.  I began with similar numbers, but after about 5 years I was stable at around 400 cd4's, then they rose even more in the following years.

Second, I could be wrong but it sounds like what your insurance company is doing is illegal.  Technically yes, you infection pre-dates your insurance but it was not diagnosed yet so I don't think they can technically make such a claim.  Was there a gap in overall insurance coverage before you went on this particular policy?  At any rate, I'd advise contacting an insurance advisor at an AIDS service organization -- I see from a previous post that you live in S.E. Missouri, so even though you live in a rural area I would assume that St. Louis is a doable drive to at least meet with someone about this issue.  I would definitely get a 2nd opinion on this issue, and often ASO's have some sort of pro bono legal connections that can help you deal with the insurance company if it comes down to some legal issue, etc.
"Iíve slept with enough men to know that Iím not gay"

Offline pos2007

  • Member
  • Posts: 116
Re: CD4 dropping and Doctor questions
« Reply #2 on: January 21, 2009, 04:42:38 PM »
Thanks  for  the  reply.  My  wife  is  very  concerned,   especially  since  I  have  provided  her  care  for  2  years,  that  I  have resumed a decline  CD4 wise  and  physically  wise after  making  the  dramatic  rebound.   We  didn't  expect  my Tcells  to  start  dropping  30  pts  per  month. 
   As  to   an advisor,   forget that down  here.  When  I  asked  for  assistance I  was  handed  the  phone  book  to  look  for  myself.  We  did  travel to  St.  Louis   to  meet with social  workers  several  times ,  but  they  would  only  talk  to  us  on a limited  basis  because  they  are  in a different  district  than  we are with  different   programs  and  rules and they are not suppossed to  be talking  to  people  outside  their  district.  They  have been  shocked that  our  social  workers  don't  take  care of  these  matters  for  us.  They tell  us that in  their  area,  the social  worker takes care  of all these  problems  for  the  client   because their  job  is to reduce the stress  on  the client as  much as possible.   I  take   my  files  of  paperwork  up  their with  me ,   but  like  I  said,  KC  and  St.  Louis   fall  under  different  guidelines  and  programs  and  they are  not  suppossed to  talk  to  us.  Should  I  Expect  my    numbers  to  start  going  back  up  eventually?    after  going   Up  to  350  before   starting  going  back  down for  the last  few  months,   do  they  finally  bottom  out  some  where and  start back  up  again? 
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Online Miss Philicia

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  • Posts: 24,066
  • celebrity poster, faker & poser
Re: CD4 dropping and Doctor questions
« Reply #3 on: January 21, 2009, 05:10:21 PM »
Actually I should have asked you if your doctor had placed you back on something like Bactrim as a PCP pneumonia prophylaxis since your cd4's went below 200 again.  That's the biggest concern of having a count like that, but rather easy to address.

As far as you question about what to expect with cd4 trend lines, like I said there aren't any guarantees, but I'd expect that yes, over time they will start going up slowly though assuredly it will have periodic dips.  More important is your cd4% number and its trend line -- do you know what your last several numbers for that are?  The % number is a more stable predictor of immune function, whereas the cd4 number can fluctuate +/-100 quite easily.
"Iíve slept with enough men to know that Iím not gay"

Offline pos2007

  • Member
  • Posts: 116
Re: CD4 dropping and Doctor questions
« Reply #4 on: January 21, 2009, 10:26:52 PM »
No  Bactrim  or  Dapsone.  Allergic  to  both.  I  quit  the Atovoquone around 10  months ago  when  I  got  close  to 200  when   I was  on  my way  up  to 350   because  it  was  costing us $2700.00  per  month  for  that  medicine  for   both  my  wife  and  me ( total).    Now  that  we  have  finally   hit  the financial  bottom  of  the  barrel,  maybe  medicaid  will  pay  for  it  ,  but  the  Dr.  has  not  mentioned   putting  me  back  on  it  again.   The  meds are a battle  every  month.  Medicaid  does  not  want  to  pay  because  I    have  insurance.   The  insurance  won't  pay  claiming  preexisting  condition,   so  it  takes about  3-4  days  of  phone calls  every  month  to  get  my  meds.  and  some  of  them   neither  will  pay  for  because  there are  cheap  over  the  counter  meds   on   the  market  (  even   though  they  don't  work  for  me ) and  I  my  Dr.   prescribes  prescription  meds  instead.   I  just try  to  stay at  home away  from  people  and  I  am  just  too  tired  to  get  out and  do  much  anyway  right  now.  Sucks  ,   because  when  my  numbers were  going  up,   I was  finally  starting  to  feel   like  doing  some   of  the  things  I  had  neglected  here at  home  from  not  feeling  well  and  trying  to  get a few  things  done.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline pos2007

  • Member
  • Posts: 116
Re: CD4 dropping and Doctor questions
« Reply #5 on: January 21, 2009, 10:37:24 PM »
If   by  trend  line  you means  which  way  the CD4 numbers  are  going,    once  reaching 350,   next  test  was 285,   then 260,   then  220,    then  154
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Online Miss Philicia

  • Member
  • Posts: 24,066
  • celebrity poster, faker & poser
Re: CD4 dropping and Doctor questions
« Reply #6 on: January 22, 2009, 02:03:08 PM »
If   by  trend  line  you means  which  way  the CD4 numbers  are  going,    once  reaching 350,   next  test  was 285,   then 260,   then  220,    then  154

I want the % number -- if you don't understand the difference between the absolute CD4 number and the CD4% number please read here:

http://www.aidsmeds.com/articles/TCellTest_4727.shtml

Additionally, if your doctor is not discussing this number (the % one) with you when he goes over your lab works during appointments I'd advise asking him why he isn't doing that.
"Iíve slept with enough men to know that Iím not gay"

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: CD4 dropping and Doctor questions
« Reply #7 on: January 22, 2009, 02:51:24 PM »
Pos2007, I don't know that you can do much for your CD4 count besides maintaining meds adherence and healthy habits; by that I mean good diet and nutrition, good sleep habits, regular exercise, and no excessive drug and alcohol use. 

You may also have some as-yet undiagnosed infection that is causing a problem.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline pos2007

  • Member
  • Posts: 116
Re: CD4 dropping and Doctor questions
« Reply #8 on: January 22, 2009, 05:20:18 PM »
Don't  drink,  Never  took  drugs,   Never  missed  a dose  of  my  meds.  Thanks  for  the  link  on  the %.  I  was  going  to  ask about  that  tonight.   Fed  the  vampires  today  and i  asked  the Apria Nurse practitioner   about  the  percent  deal.  She  said  " it  was  in  normal  perameters"  whatever  that  is   but  I  would  have  to  refer  any  more  questions  to  the  Dr.  who   wouldn't  be  able  to  see  me  today  because  they  were  "over  booked"   as  usual.   
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline mopos

  • Member
  • Posts: 3
Re: CD4 dropping and Doctor questions
« Reply #9 on: January 22, 2009, 09:38:48 PM »
I  just  joined tonight and read  your  threads.  I  am also   from  semo,  started at 180  ,   on  atripla,  went  up  to  350  and   am  dropping too.   down to 206  now.  I think I   saw 3 different  people  from  Semo  on   this website  so  far, so aids  must  be  more  widespread  than  people  think   down  here.  You  are  the  second person  I've   found  HIV  pos  in  Semo   that's  history  is  almost a parallel  to  mine.  I   had  a favorite  t  shirt,   even   though  I  don't  remember  what  was  on  it  any  more  but  the  frog  and  bird  deal,   I   had   that   picture  taped  up  inside  the  cabinet  door  on  my  desk    for  years. And  yes,  I  don't  think  something  is  right with   healthcare  in  SEMo.    My  wife  got  Hiv  from   a  blood  transfusion  and went  through  a lot  of  Drs.  with  no  Hiv  tests  too.   I  was  diagnosed  after   her.   Your   wife  will  get  better.  She's  not 100%,   but  I  don't  have  to  care  for  her  now.  No-one  except  the  doctors   in St.  Louis  thought  she  would  live.  Atripla  also  makes  me  drunk  sometimes.   I  got  my   Report  Monday from  the ID clinic and  although  my tcells  are at 206 now,   she  said  the percents  are  good ,  which  meant,  she  said   the  lower falling  tcells   really  don't  mean   anything.   I looked  at  the  link  on  percents   since  I   am  new  to  this too ( this  is  my  12th  month  on  Atripla)  and  can't  say  I  understand it,  but  it  says   in  several  places  that  percents  are  more  accurate.  I  do  have  to  say  I  am   much  tireder  since  my numbers  dropped.  I  don't  use drugs,  Or  drink.  it  was  suggested  to  eat  healthy  &  get  plenty  of  rest.   I  just  wish   I  could  get  the  rest.  I get about  6  hours  with Ambien.   I  wonder  if there  is a correlation between  symptoms,  strain  of  Hiv  and  the  drug. I  was  getting  forgetful,   then  started  getting  better,  but  now  and  get   like  I  am  dislexic  since  my   numbers  are dropping.  I  have  to  dial  a phone  number 3  times  2  get  it  right.    :-\

Offline aztecan

  • Member
  • Posts: 5,396
  • 29 years positive, 57 years a pain in the butt
Re: CD4 dropping and Doctor questions
« Reply #10 on: January 22, 2009, 10:33:47 PM »
Hey Poz2007,

Sometimes, people maintain low CD4 numbers for a while before they build back up. Sometimes, it is caused by some underlying condition, other times, there is no reason.

I know there must be an AIDS Service Organization near you. If you click on POZ at the top of the screen, it will take you to the POZ Magazine site. There, you will find a box with something like "How to find services," or some such.

If you click on that, you will come to a screen that will help find an ASO near you buy typing in your zip code. I was going to do it but there are a bunch of zip codes for Kansas City!

Anyway, that may help you find services you need. An ASO would be able to help you navigate the red tape and get some help.

Hang in there.

HUGS,

Mark

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

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: CD4 dropping and Doctor questions
« Reply #11 on: January 23, 2009, 04:51:11 AM »
It may help. if possible, to switch to a PI based combo, or even Isentress (perhaps via a compassionate access programme this one0 as these tend to produce a better immunological response, perhaps +50 CD4s. Some kind of PCP prevention meds is important, even a non-standard one. Hope this helps - matt
"The object is to be a well patient, not a good patient"

Offline mopos

  • Member
  • Posts: 3
Re: CD4 dropping and Doctor questions
« Reply #12 on: January 23, 2009, 12:03:51 PM »
Interesting  you  suggest   typing  in   the  zipcode  for  support  in  our  area ,  Or  maybe someone else  suggested  it  to,  I  can't  remember,   but  I  did  that  last  night.  I  typed  in  63801,  then  the  next biggest  city  in  the  area  Poplar  Bluff,   then  63701  which  is  the  biggest town 30,000 I  think,  in  our  area  where all  the quacks are  ( sorry  but  they are really  lacking  in  their  medical  care  plus  demand  payment  up  front)   and  I got  a zero  for  the  number  of  hits.  I  have a gay aquaintance  that   had a partner  that  died  and  I  asked  him  some  months ago about  support  groups  and  he told  me about  some  on  line  ones  in  California that were the only thing  he ever  found.  There are  none   here.   I  don't  think he ever  heard about this  one,  but  his  partner died  years ago  &  I  don't  think  he  or  his  current  partner  have aids.    Like a  prior  post  that pos2007  said,  They are in  denial  here and  the  Baptist   and  Penticost preachers   preach  that  HIV  is  God's  punishment  to  the  queers.  Odd thing is,  everyone  I  have   learned about  that  has aids  down  here is  married  business  people  Like  me.  Been  married  2  my sweetheart 25  years.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: CD4 dropping and Doctor questions
« Reply #13 on: January 23, 2009, 12:37:26 PM »
Interesting  you  suggest   typing  in   the  zipcode  for  support  in  our  area ,  Or  maybe someone else  suggested  it  to,  I  can't  remember,   but  I  did  that  last  night.  I  typed  in  63801,  then  the  next biggest  city  in  the  area  Poplar  Bluff,   then  63701  which  is  the  biggest town 30,000 ...and  I got  a zero  for  the  number  of  hits. 

Mopos

There's an option to expand the search distance in the directory.  It does look pretty sparse though -- only county health departments show up for miles.  But looks like there might be a group where you could meet up with other people in person about 40 miles away.


Name: Kentuckiana People with AIDS Coalition (KIPWAC)

Location:
3805 Hobbs Rd
Kevil, KY 42053

Phone: (502) 462-3828
Fax: (502) 462-3828
URL: www.kipwac.org

Pos2007, sorry if this is a hijack, but it sounded like you live in the same area and might find it helpful too.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline pos2007

  • Member
  • Posts: 116
Re: CD4 dropping and Doctor questions
« Reply #14 on: January 24, 2009, 09:24:55 PM »
Assurbanipal,  I  don't  consider  it  a hijack.  We are all  here  to   help  each  other  and  that's  what  it's  about  right?   I  had  heard  that they  were  trying  to  get a  local  support  group  started  in  Cape  Girardeau ,  Mo,    but  being  in many  organizations  around  here  I  know  no-one  would  show  up.  Also you  can  imagine  how  people  gossip  in  a small   town  rural   area,  true  or  not,  they   love  to  spread   the  rumors.  I  found another  post  where  no-one  was  showing  up  at  the  Poplar  Bluff (80  miles  from  me) support  group  that I  didn't  even  know  existed.  probably  because  of  the  small  town   gossip  and  no-one  to  guide  them  there  either.  Thanks  for  the  link.  I'll  check    it  out.  Kevil  is  a small  town  with  574  people  .  I drove  through  there the  other  day.  About  an  hr   &  10  minute  drive.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

 


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