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Author Topic: Can't make since of my new numbers  (Read 5169 times)

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Offline clsoca

  • Member
  • Posts: 164
Can't make since of my new numbers
« on: February 06, 2009, 08:25:58 PM »
I just learned that my number went from very good to bad in just 3 months. If you look at my numbers below you will see. My ID Doc advised me a few months ago that I may be a slow progressor. Now he is advising me that I may be a rapid progressor. I am very stressed out over this. Its truly a rollercoster ride.  Has anybody experienced this before or can anybody give me some guidance why my numbers would deteriorate so rapidly. I have only been positive for 15 months. My ID Doc wanted me to start meds immediately. I said hell no.....I wanted another blood test. My next results are due next Friday. My CD4 % is 30% (what ever this means).

Any feedback, would be greatly appreciated.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline LordBerners

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  • Posts: 415
Re: Can't make since of my new numbers
« Reply #1 on: February 07, 2009, 03:43:49 AM »
Sounds like your percentage is still very high.  I don't see why the doctor was in such a rush.  If it were me I would wait for another few months of test results.  Glad to observe that you have access to care, clsoca.
Please, just call me Berners.. or Baron.

Offline keyite

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  • Posts: 514
Re: Can't make since of my new numbers
« Reply #2 on: February 07, 2009, 06:54:27 AM »
This is an ID doc? Then s/he should really know not to rely on a single lab result, not least because these tests are not all that precise and mistakes in the lab happen (poorly handled specimens, wrong calibrations of equipment, etc).

My last CD4 result was much lower than expected but my doc explained she had other patients with 'odd' results that day so most likely it was a mistake in the lab - not least because I'd had a rise in CD4%.

Good CD4% - do you have the CD4% for the two previous results too? You definitely need another result before making such a big decision. Glad you stuck to your guns!

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #3 on: February 07, 2009, 11:23:08 AM »
Thanks for the feedback. I did fight for another bloodtest. Those results will be available this Friday. I have made the decision to pause any decisions for a month unless the Firday results  show an extream lower CD4 count.  I don't have CD4 % for the previous testing periods. I don't understand why my CD4 count dropped so low in three months. I think there is something else at work here. I always thought that your CD4 count drops 100 per year. Hell I was infected only 15 months ago, and I am already looking at meds. This is not passing the smell factor, at least to me.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline aztecan

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  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Can't make since of my new numbers
« Reply #4 on: February 07, 2009, 01:13:12 PM »
Thanks for the feedback. I did fight for another bloodtest. Those results will be available this Friday. I have made the decision to pause any decisions for a month unless the Firday results  show an extream lower CD4 count.  I don't have CD4 % for the previous testing periods. I don't understand why my CD4 count dropped so low in three months. I think there is something else at work here. I always thought that your CD4 count drops 100 per year. Hell I was infected only 15 months ago, and I am already looking at meds. This is not passing the smell factor, at least to me.

Hey cisoca,

First, regarding the CD4s, they can, and often do, yo-yo wildly. Before I started meds, mine would fluctuate like crazy, sometimes rising or falling by several hundred between tests.

A percentage of 30 isn't bad either.

But, what I do find troubling is the sudden rise in your viral load. It went from 286 to 30,100 between tests.

This shows a considerable spike in viral load and is something you should watch very closely. While I know people who do fine with a high viral load, at least in the short term, it also is an indicator your immune system could be suffering substantial damage.

I don't know where you got the idea your CD4 drops only 100 a year, but that is not correct. It depends on the individual.

I have seen people's CD4s drop like stones in a very short period of time. I also have seen people last many years without meds.

It is very individual and is based not only on your genetic make up, but the strain of virus with which you were infected.

Your doctor may be right about starting meds. I think you were wise to get another set done.

How did your labs come back on Friday?

HUGS,

Mark

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

Offline clsoca

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  • Posts: 164
Re: Can't make since of my new numbers
« Reply #5 on: February 07, 2009, 10:11:07 PM »
Bear Hugs to you too Mark,

I will not have my blood results back until 2-13 (Friday the 13th, Kinda Scary). He insists the blood work be done at USC or UCLA. I don't live far from UCLA, so I don't know why it takes so long. But I did meet with my ID Doc this morning. He initiated his investigation into my rising numbers.  I know I doubted my Dr. but he is very good. He feels that a rare Hep-B 2nd vaccination shot caused my cd4 number to drop substantially or a secondary HIV infection that he called reinfection inserted a new strain into my body caused my viral load to jump high. here is my recent history that I advised him of:

11-16  - unprotected sex with HIV friend ( I thought it would be safe since I was HIV too, stupid me)

12-02 -  Hep-B 2nd vaccination shot

12-11  - Flu symptoms ( I already had the flu vaccination in October) Flu symtoms lasted for 26 days

01-05 -  Severe right foot pain, severe flu symptoms. Slept that night for 14 hours, night sweets,
            headaches,  (well you get the picture).

01-06 -  Woke up at 8am. No more flu symptoms. However unable to walk on right foot. Extream pain
            to right foot.

01-06 -  Xray of foot shows everything is normal, no spurs, no swelling etc.

01-07 -  Right foot back to normal.

01-24 -  Gave blood for 3 month check up

02-05 -  Received bad news of blood work

He said he does not believe or disbelieve in reinfection, but he did say that the evidence in the LA area is pointing to a reinfection possibility for some people infected with weaker strains of HIV. He currently believes that may be the case with me since I had unprotected sex with my friend who is on his third set of meds.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline aztecan

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  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Can't make since of my new numbers
« Reply #6 on: February 08, 2009, 01:30:25 PM »
Hey Cisoca,

Wow, you do keep good track of yourself, which is a good thing.

The arguments for and against reinfection have been bandied about here quite a bit, sometimes quite heatedly.

I see the logic in the possibility and what your doctor said makes sense to me as well.

That also would track with the sudden jump in viral load that I mentioned in my earlier post.

I will be most interested in hearing how things come out for you. Please keep us posted.

HUGS,

Mark

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

Offline clsoca

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  • Posts: 164
Re: Can't make since of my new numbers
« Reply #7 on: February 08, 2009, 03:39:54 PM »
Yes Mark, I will post this Friday my new results. He did advise me that my HIV is Group M: Type A1, what ever the hell this means.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline John2038

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  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Can't make since of my new numbers
« Reply #8 on: February 08, 2009, 04:42:31 PM »
HIV-1 subtype A is among the less virulent as far as I know.
Don't be disapointed by a single lab. It means so much less than the trend.
So you need more labs to be done, and your CD4% are still high.
A CD4% of 30% means typically an absolute CD4 count of around 450, which is still good.
A VL under 50k is ok.
Now I am personally very favorable to an early start on meds.
Just my cent.

Best Luck
John

Offline clsoca

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  • Posts: 164
Re: Can't make since of my new numbers
« Reply #9 on: February 12, 2009, 03:19:49 PM »
To Mark and John:

Tomorrow is my big day. I sure hope the laboratory made a mistake.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Can't make since of my new numbers
« Reply #10 on: February 13, 2009, 10:13:47 AM »
I have my finger crossed and am sending lots of positive energy your way.

XOXOX

HUGS,

Mark

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

Offline clsoca

  • Member
  • Posts: 164
Re: Can't make since of my new numbers
« Reply #11 on: February 13, 2009, 08:50:18 PM »
Mark your too funny about the energy stuff. I bet you would be a fun person to drink beer with.

Well a lot happend today with me and please let me share with you that my ID Dr. had his shit together today and was ready for a fight with me. I lost wholeheartedly. First, he had my blood work done at two of the most respected laboratories in southern California with similar results. Then he had email opinions from his ID Dr. friends from Germany, France and England who each said I must start meds in order to stop future destruction of my immune system. My ID Dr. did say something very disturbing to me that I wanted to share. He said the USA will soon fall behind European nations in HIV treatment research.

My ID Dr. told me he is tentatively diagnosing me with reinfection. He is ordering a second HIV genotyping to see how many mutations have cropped up since my October test.  He said anything more than 3 would indicate likely reinfection. He said reinfection is controversial among HIVers and Doctors but in my a case a reasonable sound conclusion. He said originally I had a very weak HIV strain that probably replicated inefficiently. So when I when my body was introduced to another potent strain, my entire HIV status changed for the worst overnight.  He stated that he never really formed an opinion until now with my case.

Anyhow, I now have a prescription for atripla in my hands. My ID Doc said don;t wait for my viral load to jump a few "logs" ( what ever that means). He said HIV is preparing to mount a war against my immune system so why not fight back. So here I am no at home with the major decision, meds or no-meds. He said it was my choice and he would support my choice.

I feel I am being robbed of my approximately 6-10 year med-free period. I feel very sad right now.

Any advise out there. Has anybody ever taken atrapla, if so what about the side effects?

10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Online Miss Philicia

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  • celebrity poster, faker & poser
Re: Can't make since of my new numbers
« Reply #12 on: February 13, 2009, 09:01:19 PM »
I bet you would be a fun person to drink beer with.

More than one drink and she becomes a messy queen -- can't hold her liquor at all!  And forget it if the bar has strippers.  She morphs into a walking ATM.
"I’ve slept with enough men to know that I’m not gay"

Offline aztecan

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  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Can't make since of my new numbers
« Reply #13 on: February 13, 2009, 11:11:02 PM »
More than one drink and she becomes a messy queen -- can't hold her liquor at all!  And forget it if the bar has strippers.  She morphs into a walking ATM.

It was just a few shots of tequila and one little tip to a stripper. ;D

You'd think I was renting boys like a republican. ::)

But, back to the topic at hand. Cisoca, it sounds like your doctor was prepared for you.

I know you feel cheated of more "free time" without meds.

I have mentioned to others starting meds is like taking control and deciding you weren't going to let the virus make the decisions for you.

I am from the aggressive camp. I believe in fighting the virus earlier rather than later if only because I have seen the trouble people have if they allow their immune systems to become too compromised.

But, the decision is yours. How do you think you will handle adherence,which is critical to good ARV therapy?

Now, regarding Atripla, here is some information regarding taking it, or rather, a part of it, Sustiva:

http://www.aidsmeds.com/articles/SustivaTips_7550.shtml

I'm sure others will chime in who now take Sustiva or Atripla, or who have in the past. Remember, not everyone suffers from side effects. I did with Sustiva, but was able to take Crixivan for 11 years when it literally made other people's lives miserable.

The only way to know is to try.

Let me know how things go.

HUGS,

Mark

(Who won't mention others who also imbibed on tequila and also managed to have a fabulous time. ;) )

« Last Edit: February 13, 2009, 11:16:53 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Can't make since of my new numbers
« Reply #14 on: February 14, 2009, 08:59:36 AM »
clsoca,

I've been poz for nearly twelve years now and I'm not yet on meds. My numbers have bounced around quite a bit - I've had very low viral load results and I've had higher ones than yours as well. This has never meant that I've been reinfected, because my VL has gone back down after being high. Your CD4% is fantastic - mine has never  been that high, it's usually in the 27-29% range.

I'd say it's within your rights to take a wait and see approach. It's totally possible that this is just a case of bouncing numbers. Like your doctor, I'll support you no matter what you decide to do. Keep us posted.

Ann

Condoms are a girl's best friend

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"...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

Offline clsoca

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  • Posts: 164
Re: Can't make since of my new numbers
« Reply #15 on: February 14, 2009, 09:05:08 AM »
I think I will handle adherence very well. I live a very structured life. I go to work, go to the gym, eat dinner, read and fall asleep. It kinda sounds like I have a boring life.

I thought I would start atripla sunday night, of course on an empty stomach with water. I hope atripla does not cause me to gain weight.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline HIVworker

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  • Posts: 918
  • HIV researcher
Re: Can't make since of my new numbers
« Reply #16 on: February 14, 2009, 01:24:14 PM »
I'm a little surprised that your doctor is jumping to that conclusion so quickly. I also wonder why he says that the US will fall behind Europe in HIV. That's neither here nor there.

From a virological perspective it might have been nice to look at the sequence of the virus before your viral load started to increase vs after. Each persons HIV strain is often unique and in addition to drug-resistant mutations, the virus has other mutations that don't cause resistance. The latter are called, "Viral polymorphisms". Each HIV virus often has a unique set of these polymorphisms that almost fingerprint the virus. If a new virus has been introduced it has the possibility of recombining with the original virus and this will cause an alteration of the polymorphisms and the fingerprint would change.

If the new virus doesn't have any resistance mutations, and if you just look for 2-3 resistance mutations and don't see any - but overlook the polymorphisms - you might miss evidence of a new infection. So if your doctor is claiming you might be superinfected with a new virus, then their method of looking isn't that thorough.

It seems a bit of a weird conclusion to draw based on a couple of blood tests, as superinfection is rare and controversial....and the test they are doing isn't going to fully decide it either way.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #17 on: February 14, 2009, 02:32:34 PM »
Thanks for that HivWorker,

I kinda think he is also trying to scare me into safer sex which he has successfully done if that is his intentions. I am always suspicious of people, especially Doctors and Lawyers. I wish I was more trusting.

I just got back from purchasing 30 Atripla Tablets.....WOW...$1800.00. No wonder there is no cure. The drug companies must be making bank on this stuff.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline HIVworker

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  • Posts: 918
  • HIV researcher
Re: Can't make since of my new numbers
« Reply #18 on: February 14, 2009, 02:39:18 PM »
I understand the sceptisim about drug companies. It's a hard nut to crack though and people are working on it. Clearly there is more than one way of controlling HIV infection. Some primates can live with high viral loads and no evidence of pathogenic disease. Long term non-progressors have very low levels of HIV infection and no evidence of disease. Unlocking either would be the next big break - as would be decreasing the latently infected pool.

It's still early days, but there is plenty out there to give hope that there is something coming in the next 10 years.

R
« Last Edit: February 14, 2009, 02:53:51 PM by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #19 on: February 14, 2009, 03:43:41 PM »
I just hope I am making the correct decision to intiate meds.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline milker

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Re: Can't make since of my new numbers
« Reply #20 on: February 15, 2009, 11:25:09 AM »
This is your body, your mind, your insurance, your money.

If your doctor suspects "reinfection", then why is he giving you Atripla BEFORE getting the genotype tests? If anything, it would be worse to have to switch meds in the middle of treatment because Atripla was not the right one to start with.

If your doctor is getting opinions from different colleges then why don't you do the same? I'd definitely go see another ID. I wouldn't have suggested that until you said he gave you Atripla before the genotype results; doesn't make sense.

A 44K VL and 30-35% CD4 is perfectly acceptable if you are not ready for meds now. The numbers you show could simply indicate an initial slow VL progression. Usually when you get infected the VL is low then starts jumping up and the cd4s slowly start decreasing. This usually happens in the first 6 months, so I don't see anything weird about your numbers.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline Ann

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Re: Can't make since of my new numbers
« Reply #21 on: February 15, 2009, 12:59:18 PM »
Milker brings up a very good point. They may not even find any mutations or differences - and you might be starting meds when no reinfection has taken place.

If I were in your position, I'd wait until the additional test results are in and see what the indications are. I'd also be uncomfortable with this insistence on starting meds because you're (allegedly) re-infected. There's not enough evidence in yet.

Please don't rush into a decision. Only a week ago you were adamant you'd wait at least a month and I sense you're still a bit ambivolent about starting. And I'll still support you no matter what you decide. It's your decision, and committment.

Ann


 
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"...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

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #22 on: February 15, 2009, 04:08:43 PM »
Thank you Ann and the fine folks who cared enough to respond with an opinion. I think I will seek a second opinion next week. I am off work next week, therefore I can drive up to San Francisco where there is a great HIV program, or at least I am told. Unfortunately, I have already bought those expensive meds. What changed my mind is the posting by Milker. Why is my ID Doc placing me on meds and doing the genotyping after the fact. Well that just don't make any damn since.

This is clear evidence that this web-site serves a great purpose. It has provoked me to do some real hard thinking. Therefore, I will not be taking my first pill tonight. Hey, that means I can go to beer-bust this evening in We Ho.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline milker

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Re: Can't make since of my new numbers
« Reply #23 on: February 15, 2009, 10:23:32 PM »
Hard thinking is good, you don't have to rush given those numbers. Don't worry about the meds, there are plenty of ways you can make good use of them if you don't personally need them.

If there is something you do not understand, like what the logs are, then ask your doctor. He should take the time to explain. If not, then ask here, we can explain. You need to understand what your doctor or the nurses are telling for you to make the best decision for yourself.

Enjoy the beer bust!

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

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Offline John2038

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Re: Can't make since of my new numbers
« Reply #24 on: February 16, 2009, 07:02:34 AM »
Hi clsoca

I just hopes you will decide to start meds. It is just my 2 cents that you will be happy having doing so and hopefully, will enjoy, sooner or later then, having a high cd4 count, cd4%, low or no side effects at all, reduce significantly the risks of developing OI/non-OI, preserve your immune system, be undetectable for a while, and so in more of probably keeping a normal level  of energy.

Sure there are many reasons to delay a treatment also, but if you feel that you will be 100% adherent, and as you are not newly infected, I do not see any reasons to not to start now if you put all the pro/cons arguments in a balance.

On my very personal point of view (what anyway everyone is expressing here), it's definitely what I would have do (starting meds now).

Your immune system have been hit by the virus, and he is currently fighting this bug.

You can't resonably expect from now to see your counts increasing significantly and become stable to let say a cd4% of 45%, and a cd4 > 1000, and a very low VL.

I am always sceptical about the reasons some people are providing to stay out of meds when the one they are talking to is in the gray zone and accept the idea to start.

I think it has more to do with showing to the others how well they are doing out of meds, if not just contemplating the way they are doing.

Of course all cons argument aren't coming from such people, and most probably, most of those with cons arguments just want to preserve you from some of the inconveniences related to starting meds.

Starting meds with the counts you are currently having is now not considered, accordingly to the latest guidelines, as starting early, but on-time.

In more, a good reason to stay out of meds can't be something like "I'm fine with counts like you since years": because everybody is different, and what count in this matter is the stats and only the stats.
Those fine out of meds for decade(s) are the vast .. minority.

Not everybody have unfortunately such luck, and it doesn't means neither that their immune system won't crash a day or another nor that they won't develop others problems.

So far, nobody have been able to eradicate the virus from his body alone, and as long a the virus is there, people are progressing, could they be elite controller, LTNP or slow progressors.
There are no proof so far that those infected early in the 80s and still out of meds won't need them a day or an other. And if one day this could be demonstrated, it would be again the very vast minority of people. Of course, I really hopes those people can be the more as possible, as to stay healthy the longer as possible.

I would urge you to have a deep discussion with your ID doc about this very important question, bearing in mind the progress we have made until today with meds, and considering the new reasons of why the trend has become more and more to start meds earlier, when the cd4 count drop below 500 (there are others thresholds as well), that is, before your immune system have been slightly hit or dammaged:

Many studies have show that HAART is increasing the survival rate and is extending the life expectancy, which is the goal to reach !

Again, just a very personal point of view, and I wishes you the Best possible Luck with YOUR choice !

I have personally start HAART with CD4=550, VL=450 and I have NO regrets (but hesitations).
No side effects, I feel really great, and I became undectectable at my lab at +3 weeks (no labs have beed made before these 3 weeks). My CD4% have incease by 3% already (21%). Next lab next week at +2 months.

John

EDIT: My crap english, as usual..
« Last Edit: February 16, 2009, 09:06:31 AM by John2038 »

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #25 on: February 16, 2009, 12:49:38 PM »
I am confused about the whole topic. Last night my HIV pos friend had an entirely  different take on the subject confusing me even more. And he has been pos for almost 20 years.

I made an appointment at the San Francisco Ward 86 clinic. I have to drive to yet another laboratory and give more blood this morning for that appointment. Has anybody ever been to this HIV clinic before? Some of the HIVers here in LA recommended it. Well anyhow, this will be my last hope in better understanding my dilemma and hopefully, I make a just and proper decision.  I will be traveling up the 101 freeway to the City this Wednesday night and stay at my aunts house. All in all, I feel this is the best thing to do. I think Ronald Regan said it best, "Trust but Verify."
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline Ann

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Re: Can't make since of my new numbers
« Reply #26 on: February 16, 2009, 01:11:09 PM »
clsoca,

Just curious, but what was your mate's take on the situation?

Ann
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"...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

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #27 on: February 16, 2009, 02:20:32 PM »
Hi Ann,

He said I should wait until I have symtoms. Sounds a bit stupid to me.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline Ann

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Re: Can't make since of my new numbers
« Reply #28 on: February 16, 2009, 05:34:50 PM »
clsoca,

That sounds a bit stupid to me too. Ask anyone who felt fine until they suddenly found themselves in a hospital bed with a bad case of PCP.

One should go by the CD4 numbers and to an extent, the VL numbers, and current recommendations on starting therapy - but when a trend becomes apparent. You don't really have an apparent trend yet.

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

Offline aztecan

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  • 29 years positive, 56 years a pain in the butt
Re: Can't make since of my new numbers
« Reply #29 on: February 16, 2009, 06:24:41 PM »
Hey Cisoca,

Getting a second opinion is a good idea. I think that will help clear things up for you.

Regarding the doctor giving you Atripla prior to the genotype. if memory serves, you said it was the second genotype the doc was doing to determine if you had been infected with another strain.

I'm not sure if i buy the reinfection theory or not, but others are hinting your numbers are the result of a recent infection, which doesn't fit the data either.

You state in your signature line you believe you were infected in October 2007. You tested positive in July of 2008.

Your lab results in October 2008, a year after you said you were infected, were a viral load of 286 and a CD4 of 724.

After initial infection and, indeed, during the first six to eight months of infection, it is not uncommon for the viral load to be high and the CD4 low, then they decrease (viral load) or increase (CD4s)  to a base level.

A viral load of 286 is not indicative of a new infection, but would be expected to be found in someone who had been living with HIV for a while, as you have indicated. Actually, a viral load less than 400 would have been undetectable a few years ago.

But, between October 2008 and January of this year, things changed.

Your CD4s dropped from 724 to 329 in January. In February, they remained in the mid to low 300s.

At the same time, your viral load jumped from 286 in October 2008, to 30,100 in January 2009 and to 44,000 this month.

I fully understand you wishing to wait to start meds. In fact, the idea of going to SF to get that second set of opinions is a great idea.

But, as Ann and other said, don't wait until you are symptomatic to start meds. The prospect of taking meds is much rosier than having to deal with PCP, Toxo, CMV or some of the things found in the AIDS bag of horrors.

Oh, just a side note about safer sex. I would, if I still were having sex, be safe. Not because I fear reinfection, because I am still not convinced it is a threat. I would worry more about the other nasties out there that I don't want to invite home, such as syphilis, gonorrhea, herpes, etc.

Just food for thought.

Keep us posted on how things go in San Francisco.

HUGS,

Mark


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

Offline HIVworker

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Re: Can't make since of my new numbers
« Reply #30 on: February 16, 2009, 11:55:30 PM »
Mark,

I guess the wierd thing is that his doc is going with a superinfection model and prescribing drugs before...

1) seeing if his theory is correct and a new strain is present
2) Seeing if (1) is correct and the new strain has mutations.

Make little sense to me. But not much does anymore.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline aztecan

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Re: Can't make since of my new numbers
« Reply #31 on: February 17, 2009, 10:09:33 AM »
Hey R,

Yes, I agree. That is odd. Like I said above, I don't know that I buy the reinfection theory.

In some ways, it would make sense in Cisoca's case, but even then.

I wonder if the doc was doing as you suggest, testing his theory, or acting on the fact Cisoca's CD4s have dropped below the recommended level when meds should be started?

I don't know the doc.

I hope the San Francisco trip will provide better information and maybe a clearer perspective.

By the way, it is good to see you posting again. Don't be such a stranger.

HUGS,

Mark


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

Offline mesu

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Re: Can't make since of my new numbers
« Reply #32 on: February 17, 2009, 10:54:41 AM »
Hi Clsoca

in my opinion, your numbers are not that bad despite the drop in the latest blood work. your percentage only drop by 1%...as long as you are in good health and take care of yourself, there is nothing to worry about...if you dont want to start med just yet, you may talk to your doctor and choose to wait for another blood work to see if the number bounces back a bit.

I started off with a very low cd4 number (see my numbers below)...and after i started meds in May last year, the number went up in a good pace, however, my lastest result showed a drop in cd4, i guess cd4 does fluctuate a bit, even i started meds....it is just normal that sometimes the body is weaker than usual, while sometimes it is stronger.

i m taking sustiva+truvada that is = atripla....no side effects for me after 3 days (only dizziness and feeling of drunk the first few days)...so if you decide to start meds, you will be just fine. I wish the best of luck and good health.

take care

mesu
Jan/Feb 07 - infected :(
Sept3: cd4 162; 13.5% VL 24,000
Oct5: cd4 68 13.6%
Nov6: cd4 205  14.64%
Dec10,07: cd4 188  15.67%  VL: 9900
FEB15,08: cd4 242 18.62%
Mar10/08: cd4 219 15.64%  VL: 7300
May26,08: start Truvada and Sustiva
July 18,08: cd4 255, 18.50%, VL undetectable (<75)
Nov 4,08: cd4 380, 27.14%,
Feb 6,09: cd4 296, 22.7%,
May 26: cd4 351, 27%,
Aug 28: cd4 310, 28%,
Dec 2009: cd4 321, 35.67%,
March 2010: cd4 325, 32%,
June 2010: cd4 385, 29.5%,
Sept 2010: cd4 368, 30.75%,
Feb 2011: cd4 431, 43.1%,
Jun 2011: cd4 433, 30.93%,
Sept 2011: cd4 435,  36 %,
Jan 2012, cd4 467, 33.36%
May 2012: cd4 421, 38.21%,
Sept 2012: cd4 393, 30.23%,
VL: undetectable since July 08

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #33 on: February 19, 2009, 09:12:40 PM »
My Ward 86 Dr and I discussed my situation for about 45 minutes. The Dr spoke impressively. 

He read my past and present blood results. He advised me in July and November I had a very low viremia. He said that means it was not replicating viruses. In three months the virus began replicating. He asked me to not confuse the issue of increased replication with questions like, Why has my numbers changed so rapidly? Or, Did I get reinfected? He said the question of why does not matter whatsoever. He said HIV is a very smart bug and does what it wants to if not on medication.

He said, the objective is to be undetectable while my immune system is  intact, plain and simple. He said don't wait until you get sick and then try to raise your cd4 count. I mentioned my good cd4 %. He said that is just one component to look at and should not be the sole basis for any sound medical based decision.

He said I already meet the guideline threshold for meds. He shared with me that the clinic has had patients that went from cd4 counts over 1000 to an AIDS diagnosis in a few months. He said anybody with a cd4 count between 350 and 500 with viral activity should now consider medication therapy. A cd4 count dipping below 350, point to medication therapy being a basic must before too much damage has been done.  He said it is my decision and maybe I could go a few more months or years without medication, but why take such an enormous risk.

He also said from his experience, if I got sick now for whatever reason (flu, sore throat. etc) I would risk succumbing to even more problems.  Well I finally heard enough and decided to leave.

This is the end of my decision making story.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline aztecan

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Re: Can't make since of my new numbers
« Reply #34 on: February 19, 2009, 09:21:03 PM »
I think you made a wise decision based on some very sound advice from the doctors.

At the conference in Montreal, the discussion of when to start treatment was a hot topic and, from what my doctor told me just yesterday, they are now looking at between 350 and 500 as the starting points.

I started when my CD4s were 440 or so. I have done relatively well.

Let us know how the Atripla goes for you.

HUGS,

Mark

P.S. Excuse my calling you the wrong name, ciosa rather than the correct cLsoca. My tired old eyes are playing tricks on me.
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #35 on: February 19, 2009, 09:25:54 PM »
I sure will Mark,

I feel blessed that I have access to wonderful if not the best access to health care.

Oh the Doc also did an anal examine which I thought was weird. He said he was looking for a herpes outbreak that many Dr’s overlook. Well I did not evidence of herpes. What does herpes have to do with HIV.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline Robert

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Re: Can't make since of my new numbers
« Reply #36 on: February 19, 2009, 10:33:54 PM »

Oh the Doc also did an anal examine which I thought was weird. He said he was looking for a herpes outbreak that many Dr’s overlook. Well I did not evidence of herpes. What does herpes have to do with HIV.


Herpes or warts?  An anal examination for warts is fairly routine.

robert
..........

Offline northernguy

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Re: Can't make since of my new numbers
« Reply #37 on: February 19, 2009, 11:26:58 PM »
...I feel I am being robbed of my approximately 6-10 year med-free period. I feel very sad right now...

We hear a lot about this mythical ten years, but it seems to me there are a lot of folks here in the same boat as you, who progress rapidly.  Then again, perhaps that's why they're here  ???
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #38 on: February 20, 2009, 11:14:33 PM »
Going on 2nd night of atripla. Only side effect so far is a good night sleep. No dreams, just deep sleep.
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

Offline milker

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Re: Can't make since of my new numbers
« Reply #39 on: February 21, 2009, 09:44:52 AM »
I am very excited for you. You made a wise choice by getting a second opinion and you obviously had a very good discussion with the new doctor and understood very well what he was telling you. This allowed you to know what you are doing and not ask yourself questions for the rest of your life.

I have absolutely no side effects with Atripla, except when I eat a big meal at the same time, which has happened only 3 or 4 times since I started. When that happens I feel drunk for about 30 minutes and it goes away.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline clsoca

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Re: Can't make since of my new numbers
« Reply #40 on: February 21, 2009, 11:14:39 AM »
Milker:

Yes in deed, I do feel very good (for mental health reasons) about obtaining a 2nd opinion. And I feel good about taking Atripla. I have never been on medication. So this will take some time getting use to.

I am still very disappointed about not having my 10 year asymptomatic period. I brought this up to the Dr. He said in his opinion there is a clear trend asymptomatic periods are morphing into shorter periods.

Atripla is nothing more than a super-dupper sleeping pill for me, although, I never had a problem sleeping.   
10/07 Infected
11/07 Seroconversion
07/08 Tested Poz
07/08 VL 487  CD4 658  (No Meds)
10/08 VL 286  CD4 724  (No Meds)
01/24/09 VL 30,100   CD4 329 CD4 30% (No Meds)
02/06/09 VL 44,000   CD4 367 CD4 36%  Blood Work @ UCLA (No Meds)
02/06/09 VL 44,000   CD4 317 CD4 35% Blood Work @ USC (No Meds)
02/12/09 VL 52,000   CD4 297 CD4 29%
02/12/09  Started Atripla
04/01/09 VL 60  CD4 667   CD4 48%
06-05-09  VL UD CD4 427   CD4 39%

 


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