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Author Topic: Frustrated and Need Advice....  (Read 6131 times)

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Offline stpetecoyote

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Frustrated and Need Advice....
« on: March 05, 2007, 07:47:58 PM »
okay....after 9 vials of bloodletting and waiting a month, I now know that my CD4 is 254...low? Luckily it is not resistant and should be treatable with my choice of poisons...the catch is my viral load is lost in the mail or some fax machine is being evil today.  no word on the Hep B, or any other tests except for Hep C which  came back neg. 

I am not sure yet what to think of my ID Dr,  I have heard mixed reviews,  he has been nice enough to me.  But I just wonder if I shouldn't have a Dr that would have looked at my test results before my appt--is that unrealistic? The viral load results should have only taken  week or two, that means he had the results for 2 weeks before the appt and could have had me give more blood or tracked down the results in the meantime.  Instead my results are right on the edge,  and pretty much left it up to me about meds,  no real advice on the matter or anything.  I am fine with taking an active part in my treatment and the way it will head...but it just seems like something is lacking here. 

Some background:


I was sick in October of 2006 and got a test,   still neg so i wasn't producing antibodies at that time.  Diagnosed Jan 18 2007.  Blood was drawn Feb 5th, I had just had a minor cold the week before.  March 5th I am at CD4: 254  unknown viral load.  if they don't find it I will be getting more blood drawn tomorrow and should have the count numbers in a week or so.

With my numbers where they are...should I head for meds now?  wait two months for the next round of testing?  I am sure I will be surfing the net all night  for answers but any advice would be appreciated,  either on the meds or the Dr.   I am spoiled by having a great General practice Dr who has taken great care of both my partner and I for years.   Am I just asking too much from my ID Dr?  Recommendations for a Dr in the Tampa Bay area?

Thanks

-kris
When we killed what we were to become what we are, what did we do with the bodies? We did what most people do; buried them under the floorboards and got used to the smell - Jeannette Winterson


02/05/07 CD4 264  24.0% VL ??.?
03/05/07 CD4 ???   ??.?%  VL 825  
03/22/07 CD4 355  27%    VL 1232
04/24/07 CD4 490  28%    VL 3785
07/26/07 CD4 368  23%    VL 8900
08/31/07 CD4 454  23%    VL 2200
10/29/07 CD4 474  24%    Vl  18800
Started Atripla...been VL Undetectable and CD4 around 400 Ever Since

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: Frustrated and Need Advice....
« Reply #1 on: March 05, 2007, 08:28:15 PM »
Hello Kris,

Welcome to the forums...I have had errors made, which resulted in either not getting the viral load back, or having to take a redraw, and have it re-done. So, it does happen on occasion. I am up in the Clearwater area. Sometimes my blood tests results can take over two weeks to get to me from my doctor.( from the time they are taken in his office) Hang in There. I would wait for the additional blood test results, before making hasty decisions to start on meds. But of course, this is between you and your doctor.

Your t-cell counts are going to to fluctuate, especially since you were recently diagnosed positive in January.And you were negative in October. Hang in there !! When you get those results let us know...


Meantime, make sure to check out the lessons portion of the site. Takle your time, and ask questions, when you get them, if there are things you don't understand.



Welcome to the forums--stay in touch----------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline stpetecoyote

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Re: Frustrated and Need Advice....
« Reply #2 on: March 06, 2007, 10:32:54 AM »
Thanks Ray,  and all those who have sent PMs.   Taking it day by day just frustrated with the one number I was able to get, and the lack of concern/advice from the Dr. 

I have heard there is an office specializing in HIV/AIDS in Clearwater...waiting for a call back from a friend with the name...do you/anyone know of it?  Going back in to get more blood drawn today so I am going to get copies of my paperwork...looks like with my current ID Dr that will be the best way to get a handle of how things are going.

Kris
When we killed what we were to become what we are, what did we do with the bodies? We did what most people do; buried them under the floorboards and got used to the smell - Jeannette Winterson


02/05/07 CD4 264  24.0% VL ??.?
03/05/07 CD4 ???   ??.?%  VL 825  
03/22/07 CD4 355  27%    VL 1232
04/24/07 CD4 490  28%    VL 3785
07/26/07 CD4 368  23%    VL 8900
08/31/07 CD4 454  23%    VL 2200
10/29/07 CD4 474  24%    Vl  18800
Started Atripla...been VL Undetectable and CD4 around 400 Ever Since

Offline J.R.E.

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  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Re: Frustrated and Need Advice....
« Reply #3 on: March 07, 2007, 07:29:23 AM »
Kris,

I private messaged you, some information.



Take care------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline gordonh28

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Re: Frustrated and Need Advice....
« Reply #4 on: April 08, 2007, 12:24:13 PM »
Hi Kris. Have you been able to make contact with a reputable HIV Doctor here in St Pete?
I have been here for seven years, moved up from Miami, and was very fortunate to get with the right healthcare professionals within a six month period.
Let me know if i can help with suggestions, or advice.
Be Well.  :)

Al H
Gordonh28 ( Al )

I have been in St Pete, Fl. for 9 years.
Moved here from Miami, I lived there for 12 years. (Diagnosed in 1995)

Labs
02/28/2008 VL>25    CD4>837 CD4%>37
05/08/2008 VL>25    CD4>875 CD4%>35
08/26/2008 VL>25    CD4>578 CD4%>38
11/04/2008 VL>25    CD4>879 CD4%>34
02/24/2009 VL>25    CD4>833 CD4%>36
05/04/2009 VL>25    CD4>762 CD4%>37
08/25/2009 VL>25    CD4>823 CD4%>37
10/21/2009 VL>25    CD4>1025 CD4%>34
03/13/2010 Vl>25     CD4>745  CD4%>34
04/06/2010 VL>25    CD4>877  CD4%>35
Norvir/Comb/Lexiva

Offline Life

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  • Member 2005
Re: Frustrated and Need Advice....
« Reply #5 on: April 08, 2007, 10:21:03 PM »
Welcome Kris.....  First impressions on your doctor are important.  How important they are to you is up to you...  I like to be hand held and coddled and thats what I found first pick.....   As for your numbers, I think its a bit earily to be thinkin meds....  At least another full set of labs if not one more after that and about 3 months between.   It would be great to know your viral load and cd4/cd8 percentage as this gives us a better snap shot in time of how your bug is bugging....

Welcome to AM, you will find all of us to be a handful of weirdness, inspiration, love and support...  Take it, its free...

Love,

Eric

Offline stpetecoyote

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Re: Frustrated and Need Advice....
« Reply #6 on: May 24, 2007, 11:43:23 AM »
Thanks for the responses  :-)   managed to find a new ID Dr and am very happy. Still not on meds,  my numbers are okay so I am in that limbo,  deciding what to do.  :-)
When we killed what we were to become what we are, what did we do with the bodies? We did what most people do; buried them under the floorboards and got used to the smell - Jeannette Winterson


02/05/07 CD4 264  24.0% VL ??.?
03/05/07 CD4 ???   ??.?%  VL 825  
03/22/07 CD4 355  27%    VL 1232
04/24/07 CD4 490  28%    VL 3785
07/26/07 CD4 368  23%    VL 8900
08/31/07 CD4 454  23%    VL 2200
10/29/07 CD4 474  24%    Vl  18800
Started Atripla...been VL Undetectable and CD4 around 400 Ever Since

Offline J.R.E.

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  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Re: Frustrated and Need Advice....
« Reply #7 on: May 24, 2007, 08:54:35 PM »
Hey Kris,

Glad to hear that you found a doctor that your happy with  !!! Your numbers look good. When is your next scheduled appointment for blood work?


Take care-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline stpetecoyote

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Re: Frustrated and Need Advice....
« Reply #8 on: May 29, 2007, 01:48:52 PM »
Go back in August....gotta love the waiting game  ;-)
When we killed what we were to become what we are, what did we do with the bodies? We did what most people do; buried them under the floorboards and got used to the smell - Jeannette Winterson


02/05/07 CD4 264  24.0% VL ??.?
03/05/07 CD4 ???   ??.?%  VL 825  
03/22/07 CD4 355  27%    VL 1232
04/24/07 CD4 490  28%    VL 3785
07/26/07 CD4 368  23%    VL 8900
08/31/07 CD4 454  23%    VL 2200
10/29/07 CD4 474  24%    Vl  18800
Started Atripla...been VL Undetectable and CD4 around 400 Ever Since

Offline Wolfhound

  • Member
  • Posts: 18
Re: Frustrated and Need Advice....
« Reply #9 on: June 09, 2007, 12:14:03 PM »
       Get the phenotype and genotype tests taken before you go on meds. This way you and your doctor will know what strain/type of the virus you're dealing with and then your doctor will know what drug therapy to put you on. The tests are expensive but in the long run will save you time and guess work regarding what medication is working for you and what isn't.

Wolfhound

                 


         

Offline ade

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Re: Frustrated and Need Advice....
« Reply #10 on: June 16, 2007, 03:33:04 PM »
I am frusrated too i was leaving well with my family not until early 2006 when   iwas diagonised my cd4 is good with 1102 but my viral load rose from 15000 last test to 50000 which i am very worried about,my wife and my two children are so close to me and i am afraid for their life as my skin is not ok as before especially my hand and leg my wife and children is like that too i am afraid as i dont have the confidence to tell them to do the test since i was told life has not be thesame for me,i am now bankcrupt i am about loosing the house i bought on morgage five years a go.   rote

Offline Ann

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Re: Frustrated and Need Advice....
« Reply #11 on: June 16, 2007, 07:40:38 PM »
ade,

If you're worried about infecting your wife and children because of skin problems, please relax. Hiv is NOT transmitted in this manner.

As long as you are wearing a condom for anal or vaginal intercourse with your wife, you won't infect her.

You won't infect your children by hugging, kissing or otherwise touching them.

Hiv is spread through unprotected intercourse and in the context of family life, that's the only thing you need to avoid. You might want to read the HIV Transmission Lesson so you can better understand transmission matters.

Oh, and welcome to the forums!

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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