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Author Topic: Need some Advice-Fast progessor??  (Read 4166 times)

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Offline Horizon

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Need some Advice-Fast progessor??
« on: August 01, 2008, 09:07:54 AM »
Hi Guys, I am new on this site and need some advice.
I tested NEGATIVE in September 2007, then 7 months later in May 2008, by test came back positive.
I dont recall any seroconversion.

I immediately did my labs and got the restults recently.
CD4 is 280 and 15%.
They forgot to do my viral load so I dont know

The female doctor at the London clinic (Bloomsburg) seemed surprised at my results, and suggested that I could possibly be a fast progressor.
I could have only been infected sometime in the past 6-8 months.
They also did a test to determine when I was infetced...and it shows that I was infected more than 6 months ago. I find this off...as I was negative last year in SEPT.
She did mention that this test is however merely a research test.
Does anyone know about this test.
Also, do these numbers indicate fast progression. I know that I need to wait for the next set of results, which I will get in 2 weeks, but I am still a bit concerned, as its a low CD4 and also a low%.

These lab results were more stressful compared to getting the initial diagnoses.

I am 30 years only, and gay  South Africam male living in London

Last negative result - September 2007

May 2008- Tested Positive
May 2008 CD4 280 (12%)          VL (unknown)
July 2008 CD4 370  (17%)          VL 9,800
Aug 2008 CD4 330 (17%)           VL10,000
Dec 2008 CD4 350                (Started Atripla)
Aug 2010 CD4 550                 Undetectable
Jan  2011 CD4 520

Offline Alain

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Re: Need some Advice-Fast progessor??
« Reply #1 on: August 01, 2008, 09:20:56 AM »
Horizon.

Welcome to this place. I never heard of a test that can pin point the exact time of being infected. Unless you know your self for sure.

The comment of being a fast progressor, I find it a bit premature as you must be testing a few times to see how your immune system is behaving.

I feel that her comment was not very helpful to you at this time, as you and your body are still trying to get acquainted with this bug.

Try not to worry and take it a step at the time.

Stay well, Alain

Offline Horizon

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Re: Need some Advice-Fast progessor??
« Reply #2 on: August 01, 2008, 09:26:37 AM »
Thanks Alain
She did say this test is a new "research" test, but it does not make sense to me.
The doctor was not very empathetic and I plan to change her...
it was my very first lab test and she was already hinting that i was a (1) fast progressor or (2) need to start thinking about Meds.

The fact that i mentioned that I had a bout of Thrush, had seemed to convince her.
But I have read that some people do get this during the primary phase.
BUt maybe she is rights, and it is indeed a clue to fast progression.

I have however always had low total white cells when ever i had a full blood count (when I was negative).
Perhaps my genetic make up, and the fact that I normally have low white cells, has contributed to this rapid progression and poor first labs.

Last negative result - September 2007

May 2008- Tested Positive
May 2008 CD4 280 (12%)          VL (unknown)
July 2008 CD4 370  (17%)          VL 9,800
Aug 2008 CD4 330 (17%)           VL10,000
Dec 2008 CD4 350                (Started Atripla)
Aug 2010 CD4 550                 Undetectable
Jan  2011 CD4 520

Offline Alain

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Re: Need some Advice-Fast progessor??
« Reply #3 on: August 01, 2008, 09:36:51 AM »
With your numbers as they are, I too would start thinking about taking meds.

Mind you , this is a very personal decision to make.

Like I said wait and see the trend about your immune system with a couple of more test.

And I was just thinking, she doesn't even know your viral load, which is important to make an well informed decision.

It simply is, a part of the process, and a very important one.

I would get a second opinion, you have everything to gain and the right, of being informed properly and as accurately as possible.


Offline Horizon

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Re: Need some Advice-Fast progessor??
« Reply #4 on: August 01, 2008, 09:39:34 AM »
Thanks. But I have had this virus for 7 months MAX. possibly even less.(as I tested negative 7 months before)
I really dont want to be taking meds already.
Last negative result - September 2007

May 2008- Tested Positive
May 2008 CD4 280 (12%)          VL (unknown)
July 2008 CD4 370  (17%)          VL 9,800
Aug 2008 CD4 330 (17%)           VL10,000
Dec 2008 CD4 350                (Started Atripla)
Aug 2010 CD4 550                 Undetectable
Jan  2011 CD4 520

Offline dolcevita08

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Re: Need some Advice-Fast progessor??
« Reply #5 on: August 01, 2008, 10:58:43 AM »
Horizon-

Welcome to the forums. I am sorry you seem to be having trouble with an insensitive doctor.  A recent diagnosis can present many challenges to face. As someone who was diagnosed this year, I can attest to that. I am doing fairly well, but there are still tihings I am coming to terms with. I was diagnosed in April and started meds in May of this year. Finding a good doctor and support system is key and I hope you are able to do that.

Choosing when to start meds is a very personal decision but your CD4 number is within the guideline for starting meds that is widely accepted. I would visit another doctor and get a full work up (with viral load) and seriously consider starting medication. Keep in mind that if your CD 4 is to drop below 200, you will need additional medication to prevent OI's (opportunisitic infections) and will achieve an AIDS diagnosis (that is the point at which I was diagnosed-with a CD 4 below 200). The meds were not as bad as I thought they would be. While everyone is different, for me the side effects have been minimal and its good to know that I am fighting the virus inside me. Starting with a higher CD4 can help prevent a lot of complications down the road. 

Good luck to you! We will be thinking of you.

Tim
Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Offline Peter Staley

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Re: Need some Advice-Fast progessor??
« Reply #6 on: August 01, 2008, 11:19:39 AM »
There ARE experimental tests that attempt to determine a "recent" HIV infection, including STARHS (Serologic Testing Algorithm for Recent HIV Seroconversion, also called the "detuned assay"), the BED Assay (BED HIV-1 Capture EIA), and others.

A good summary of STARHS, which is used by many cities in the U.S. to track HIV incidence, can be found here: http://www.thebody.com/content/art31723.html.  Note:  this summary says "STARHS testing is not very reliable for an individual -- but more accurate for a population, since it wrongly classifies about the same number of people as early or late infection."

Horizon -- can you find out the name of the test they ran that leads them to believe you were recently infected?  We can do some research on it once we know the name.

« Last Edit: August 01, 2008, 11:28:27 AM by Peter Staley »

Offline Horizon

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Re: Need some Advice-Fast progessor??
« Reply #7 on: August 01, 2008, 11:26:36 AM »
Thanks for the post. I will try find out exactly what the name of the test was, but doubt its accuracy based on the timing of my previous negative result.
Last negative result - September 2007

May 2008- Tested Positive
May 2008 CD4 280 (12%)          VL (unknown)
July 2008 CD4 370  (17%)          VL 9,800
Aug 2008 CD4 330 (17%)           VL10,000
Dec 2008 CD4 350                (Started Atripla)
Aug 2010 CD4 550                 Undetectable
Jan  2011 CD4 520

Offline komnaes

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Re: Need some Advice-Fast progessor??
« Reply #8 on: August 01, 2008, 11:51:47 AM »
I am also on BED Assay.. though I haven't spoken to my doctor about it since last September.

Hang in there Horizon. It does take a few tests to find a trend. You said you were first tested positive back in May. How many test(s) you've done since? Just one?

Welcome to the forums, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline markaj

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  • Posts: 80
Re: Need some Advice-Fast progessor??
« Reply #9 on: August 01, 2008, 12:36:55 PM »
Hey Horizon, I know exactly what you're going through.  My first bloods were similar to yours and not at all unusual during primary infection, which if you haven't had a test since last year I guess is still feasible.  2 weeks later they were repeated and the CD4 more than doubled but the viral load has consistently been very high.  I also had thrush, unfortunately I still do as it hasn't responded to any of the anti-fungal treatments, Flucanazole or Itracanaole.
Although the UK guidelines say consider starting meds when the CD4 drops below 350 and if the patient feels ready, this is only the case usually with 'established HIV infection' (normally 6 months after seroconversion).  You definitely need to get those bloods repeated a few more times before starting meds, if you're not so keen to start them so soon.  I was the same.  Unfortunately my health took a turn for the worse and I started about a month ago because it didn't look like I had much choice. The side effects were nowhere near as bad as I thought and I don't regret it for a second. 
I've asked my doctor a few times if I might be a fast progressor - she's not so keen to get drawn into that, all I get told is that the majority of HIV patients do okay without meds for a number of years, some for many years and others' bodies need a bit of help a bit sooner.  It doesn't mean you're necessarily a 'fast progressor.' 
In the UK you would only be diagnosed with AIDS if your CD4 drops below 200 (confirmed,not just a one off) and if you have any 'opportunist infections.'  Thrush can be an OI but yours might not necessarily be related to HIV - my doctor thinks mine was to do with all the different antibiotics I had to take for various infections in quick succession for example.  In the US you can be diagnosed with AIDS on either the CD4 being under 200 or the CD4% being under 14%.  If I was in the US I would have been diagnosed with AIDS 2 months after infection!
I would be more worried about the care you might be getting at your clinic.  Forgetting to test blood they've already taken for a viral load result and bluntly using phrases like fast progressor on the basis of half of one result concerns me a little.  I'm not surprised you've been stressed by this and the stress they've caused you is not going to help your immune system one bit.  Good luck mate.
Mark
Infected Jan 08 / diagnosed Feb 08
Feb 08 - CD4 230 (9%) VL 3.5 million
Mar 08 - CD4 440 (6%) VL 660.000
Apr 08 - CD4 420 (11%) VL 3 million
Jun 08 - CD4 200 (7%) VL 3 million
Started Kaletra/Truvada Jul 08
Jul 08  - CD4 250 (14%) VL 23.893
Aug 08 - CD4 410 (15%)  VL 4.313
Switched to Sustiva/Truvada Aug 08
Switched to Reyataz/Norvir/Truvada Sep 08
Diagnosed with Hep C, HIV meds stopped for a bit
Nov 08 - CD4 414 (12%) VL 500.000+
Started Isentress/Truvada Nov 2008
Dec 08 - CD4 381 (17%) VL 1.116
Jan 09 - CD4 534 (20%) VL <50
Started Interferon/Ribavirin Jan 09
Feb 09 - CD4 407 (24%) VL <50
Mar 09 - CD4 360 (28%) VL <50
Apr 09 - CD4 279 (30%) VL <50
Jun 09 - CD4 298 (36%) VL <50
Aug 09 - CD4 303 (35%) VL <50

Offline Horizon

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Re: Need some Advice-Fast progessor??
« Reply #10 on: August 01, 2008, 01:58:24 PM »
Thanks Mark..
Its re-assuring to hear from you guys. I am still a bit confused right now, but will wait for the second blood tests to come through.
Good luck with your treatment, sounds like you are ontop of your game.
emile
Last negative result - September 2007

May 2008- Tested Positive
May 2008 CD4 280 (12%)          VL (unknown)
July 2008 CD4 370  (17%)          VL 9,800
Aug 2008 CD4 330 (17%)           VL10,000
Dec 2008 CD4 350                (Started Atripla)
Aug 2010 CD4 550                 Undetectable
Jan  2011 CD4 520

Offline loop78

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Re: Need some Advice-Fast progessor??
« Reply #11 on: August 01, 2008, 04:22:21 PM »
Welcome Horizon,

I know how you feel. I went through a similar experience a few months ago, and though in my case it was less clear whether the infection was recent or not, numbers finally pointed to that direction (look at my signature).

I too had aids-bordering numbers, but they have improved over time in a way that signals it was probably recent infection. Yours may too. Anyway, you can't base a decision about starting treatment or not on a single set of results, have another test in a month and then you'll know if you can keep just watching or action has to be taken ;)

To my knowledge, there's no tried and true way of knowing how long ago you became infected, and you had a negative test 7 months ago...

Anyway, try to relax a bit, though I know it's difficult, we're here to help you through this :)

Hugs!

Offline NewLife4Me

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Re: Need some Advice-Fast progessor??
« Reply #12 on: August 01, 2008, 09:39:18 PM »
Take a deep breath and relax. I had a very low CD4 when I was diagnosed 17 years ago in 1991. I did not start taking anything until Late 1999 and have been incredibly healthy up to this year. On the mend now though. My advice is take it easy, relax and see what your next test shows.


Offline Horizon

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Re: Need some Advice-Fast progessor??
« Reply #13 on: August 11, 2008, 12:41:17 PM »
Hi

I feel I can finally breath a sigh of relive.
After getting my frist labs done at 280 CD4...I was afraid I may be a fast progressor.
I got the second results today, and CD4 went up to 370.which is a huge relieve.
I think i was definitely in the acute phase when I got first tested. Hope it keeps going up now.

What was surprising is that my doc said my viral load was unusually low at 9700.
Is this really a low number??

I tested postive in May (CD4 280)....but tested negative 7 months before, so i guessed I was in the primary phase,.
Last negative result - September 2007

May 2008- Tested Positive
May 2008 CD4 280 (12%)          VL (unknown)
July 2008 CD4 370  (17%)          VL 9,800
Aug 2008 CD4 330 (17%)           VL10,000
Dec 2008 CD4 350                (Started Atripla)
Aug 2010 CD4 550                 Undetectable
Jan  2011 CD4 520

Offline loop78

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Re: Need some Advice-Fast progessor??
« Reply #14 on: August 11, 2008, 02:20:53 PM »
Glad to read that, Horizon!  :)

Your numbers are following an evolution similar to mine. Let's hope both keep the upward trend!

And yes, that's a fairly low viral load, I would change mine for yours without thinking a second :P

Besides, he probably said that because normally viral loads during acute infection are higher than after the virus has settled down a bit.

Hugs!

 


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