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Author Topic: Undetectable without meds and have questions  (Read 9391 times)

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Offline jacken

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Undetectable without meds and have questions
« on: January 13, 2012, 02:34:37 PM »
After 6 months of being diagnosed poz, my latest lab results show CD4 667 and VL undetectable. Since my first lab, my VL kept decreasing, 297, 235, and 158.

I am relieved to know that my body is controlling the virus. At the same time I feel a bit uneased and have a few questions.

Is there a test/number (other than CD4) to see if my body is working hard to control the virus? I am worried if it will take a toll on my immu system without meds in the long run.

Given my situation, my ID doesn't see a compelling reason to start meds. At what point will I need to start meds? As soon as my VL is detected again?

Thanks.

Offline Valmont

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Re: Undetectable without meds and have questions
« Reply #1 on: January 13, 2012, 05:11:57 PM »
Hi Jacken...

Well, in my case, my CD 4 are 714 and VL almost 100.000; a little less than 6 months ago.  For now Iīm not on med only because CD are high.

Your numbers are incredible and you are very lucky.  For now, you clearly donīt need treatment.

What have to be check is that your CD4 stay more than 500...  CD4% can give you a very good information about how is really your immunity system...
Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY/ATRIPLA/Mylan....
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50%
Dic 2013: Latent TB, started Isoniazid

Offline newt

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Re: Undetectable without meds and have questions
« Reply #2 on: January 13, 2012, 07:36:58 PM »
It is unusual to have an undetectable viral load without treatment but not unheard of.

The key thing to concentrate on in deciding about starting treatment is your CD4 count. If this falls below 500 perhaps worth thinking about treatment regardless of viral load (because if your CD4 count is falling the virus is doing something to your immune system somewhere even if it's not captured by routine tests).

Your doctor can look at various standard (blood test usually) items to see if your immune system is in overdrive from HIV or relatively normal.

There are NIH research programs looking at people able to control the virus naturally which may be of interest, but off the top of me head I can't remember details of any of them.

Good luck

- matt
"The object is to be a well patient, not a good patient"

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #3 on: January 14, 2012, 12:23:07 AM »
Thanks for your replies, newt and Valmont.

Yes I am lucky. My ID mentioned about elite controller. I guess I am still too early to be considered as one.

If I am, I would be interested in participating in a study. If anyone has any information, I would be greatly appreciated. Thanks.

Offline spacebarsux

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Re: Undetectable without meds and have questions
« Reply #4 on: January 14, 2012, 12:30:25 AM »
People with HIV typically have elevated CD8 levels. I think your doctor might have that checked out.

In routine blood tests for positive people, the ratio of CD4 cells to CD8 cells is often reported. This is calculated by dividing the CD4 value by the CD8 value. In HIV-negative people, this ratio is between 0.9 and 1.9, meaning that there are about 1-2 CD4 cells for every CD8 cell.

In HIV-positive people not on treatment, this ratio drops over time until there are more CD8 cells than CD4 cells (i.e. the ratio drops to less than 1.0).


http://i-base.info/qa/20
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Ann

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Re: Undetectable without meds and have questions
« Reply #5 on: January 14, 2012, 07:52:52 AM »
Jacken, you could indeed be an elite controller and/or a long-term non-progressor (LTNP) but only time will tell.

You can find a wealth of information on LTNP as well as the studies concerning LTNP at the Zephyr Foundation website.

Good luck! I envy your numbers. ;)
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 jacken

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Re: Undetectable without meds and have questions
« Reply #6 on: January 15, 2012, 12:09:35 AM »
spacebarsux and Ann, thank you for your info.

Yes only time will tell. I am surprised that my body could control the virus because I don't think my immune system is that great.

Offline aliveinla

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Re: Undetectable without meds and have questions
« Reply #7 on: January 15, 2012, 06:36:23 PM »
My new bf is an elite controller. He said he has been giving blood to a Harvard study every half year. He has been poz for 20 years now, still UD with CD4 above 500. Several of his former BF's have passed away for aids related diseases. He is healthy as a bull. While I take Atripla and suffer from weird dreams, he isn't taking anything.
4/24/07: Last tested Neg
1/22/08: First tested Poz
1/30/08: CD4 393; 28%; VL: 44k
3/18/08: CD4 218; 26%; VL: 222K
4/24/08: CD4 402; 26%; VL: lab forgot
7/22/08: CD4 405; 25%; VL: 6,780
10/15/08: CD4 340, 26%; VL: N/A
2/4/09: CD4 394, 26%; VL: N/A
Jun 09: CD4 300, 25%; VL: 4000
Oct 09: CD4 324, 23%, VL: 10K
11/22/09: started Atripla
11/20/11: CD4 405; VL: UD

Offline Basquo

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Re: Undetectable without meds and have questions
« Reply #8 on: January 15, 2012, 07:40:41 PM »
Check out Ann's link to the Zephyr Foundation...you will find tons of info there. My doctor calls me an elite controller while I think I tend to think I'm a viremic controller; my VL has been undetectable at times but measured as high as 3000 some years ago. Regardless, there are people interested in studying us and examining our blood. I've been involved in the Harvard study for I think 4 years now, and I'll be going to the NIH in Bethesda in the early Spring to give them a fresh sample as well.

Offline J.R.E.

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Re: Undetectable without meds and have questions
« Reply #9 on: January 15, 2012, 09:10:43 PM »
Hi,

I was never told that I was a long term non-progressor,  But, in 1999,  14 years after I was diagnosed positive, my viral load was still only in the 900's.  Unfortunately, that all  went down the crapper, within the next 4 years, and when I finally started on meds, my t-cells were at 16. Can't say if I was ever completely undetectable, throughout that period.

So,  keep yourself monitored, and hopefully you may be able to go quite a while before starting on meds.

Good luck---Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline jjbearphx

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Re: Undetectable without meds and have questions
« Reply #10 on: January 18, 2012, 10:42:17 AM »
I am 24 yrs Poz I have had a love hate relationship with the cocktail meds. It is important to get an AVR combination that your body can tolerate while your system is still healthy, once numbers start going south is not the time to scramble for a combination that works. You may already have Allergies to some of the medications, it is also important that your DR preforms a genotype on your virus to find out what resistances are present already. If Possible have your Dr start you on individual drugs one at a time instead of a combo med that wile may be a one at a day pill but is more difficult to assess which drug is causing troubles.
 The Virus wile undetectable is still there it is still doing damage, to brain and other systems.
 It is very important that once started you are diligent in adherence missed doses early will compromise later treatment as well makes your later med regime harder to stick to

Offline SANJUANDUDE

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Re: Undetectable without meds and have questions
« Reply #11 on: January 18, 2012, 10:59:07 AM »
 :)  remarkable that you have an undetectable viral load with still a high cd-4 count and not on meds.  It is my understanding that you will be on meds eventually.  The virus is still in your body and may be doing damage to your organs, etc.  If it were me, I would have a protocol all lined up as soon as those numbers began going south.
You don't want to be experimenting when your cd-4 count drops and you have a viral load.

http://timehasshownme.com
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #12 on: January 18, 2012, 09:41:58 PM »
it is also important that your DR preforms a genotype on your virus to find out what resistances are present already. If Possible have your Dr start you on individual drugs one at a time instead of a combo med that wile may be a one at a day pill but is more difficult to assess which drug is causing troubles.

Thanks, jjbearphx. I did have a resistance test but my VL was so low that the test could not be performed.

I am not clear what you mean by starting on individual drugs one at a time. Since I am already undetectable, how would one know if the treatment is working?

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #13 on: January 18, 2012, 09:43:00 PM »
:)  remarkable that you have an undetectable viral load with still a high cd-4 count and not on meds.  It is my understanding that you will be on meds eventually.  The virus is still in your body and may be doing damage to your organs, etc.  If it were me, I would have a protocol all lined up as soon as those numbers began going south.
You don't want to be experimenting when your cd-4 count drops and you have a viral load.

http://timehasshownme.com

Thanks, jamesd. What specific protocol would you suggest?

Offline BorbaColen

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Re: Undetectable without meds and have questions
« Reply #14 on: January 18, 2012, 09:55:52 PM »
Hey Jacken ;)

How are you doing?
Same situation here, UD without drugs. Did your doctor talked to you about this? Mine had a huge conversation with me (1 year and 2-3 months since infected) and told me the possibilities of why is my body reacting like that. What yours told you?  And I'm also interested in those protocols :P

Bests
~Borba~

Offline jkinatl2

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Re: Undetectable without meds and have questions
« Reply #15 on: January 18, 2012, 10:00:33 PM »
I am 24 yrs Poz I have had a love hate relationship with the cocktail meds. It is important to get an AVR combination that your body can tolerate while your system is still healthy, once numbers start going south is not the time to scramble for a combination that works. You may already have Allergies to some of the medications, it is also important that your DR preforms a genotype on your virus to find out what resistances are present already. If Possible have your Dr start you on individual drugs one at a time instead of a combo med that wile may be a one at a day pill but is more difficult to assess which drug is causing troubles.
 The Virus wile undetectable is still there it is still doing damage, to brain and other systems.
 It is very important that once started you are diligent in adherence missed doses early will compromise later treatment as well makes your later med regime harder to stick to

Thing is, as I understand it the "cocktail" process actually CREATES resistance in certain areas, resistance that the other drugs can exploit. There is little reason for monotherapy, even for research purposes.

BTW, did you mean "allergy" and not "resistance?"

I certainly respect your 24 year experience with HIV. I'm only at 19 years here. But I have NEVER heard this stuff before on these forums.

jacken, I hope you take all of the advise you receive here - including/especially mine - with a grain of salt. This site is absolutely REPLETE with first tiered peer-reviewed information. This forum is, as well, It's also replete with people who might not know enough about HIV to be making suggestions. We are ALL on a learning curve here, including/especially myself.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #16 on: January 18, 2012, 10:03:04 PM »
Hi Borba,

Good to hear from you and glad that your body is controlling the virus well. My ID didn't talk to me about UD without drugs other than saying my body is having the infection under control. Since this is my first test with UD (8 months after first diagnosis), it still needs to be monitored.

What huge conversation did you have with your doc? I am curious.

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #17 on: January 18, 2012, 10:12:40 PM »
Thing is, as I understand it the "cocktail" process actually CREATES resistance in certain areas, resistance that the other drugs can exploit. There is little reason for monotherapy, even for research purposes.

BTW, did you mean "allergy" and not "resistance?"

I certainly respect your 24 year experience with HIV. I'm only at 19 years here. But I have NEVER heard this stuff before on these forums.

jacken, I hope you take all of the advise you receive here - including/especially mine - with a grain of salt. This site is absolutely REPLETE with first tiered peer-reviewed information. This forum is, as well, It's also replete with people who might not know enough about HIV to be making suggestions. We are ALL on a learning curve here, including/especially myself.

jkinatl, thank you very much for your advice. I agree with you to take the advice with a grain of salt and even more so that it is a learning curve that we are all on. I like to take a more proactive approach so I can discuss with my doc and feel confident and healthy as much as I can.

Offline LongTimeSurvivor

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  • I don'no...there may be Zombears...in theres...
Re: Undetectable without meds and have questions
« Reply #18 on: January 18, 2012, 10:22:01 PM »
When I was diagnosed, if I remember correctly, I was undetectable and my CD4s were in the 700 range. This was when I lived in Atlanta. When I moved to NYC pretty much the same. At one point my NYC doc even retested me because he thought there may have been a mistake...but since I'm on these boards you can guess the answer to that.

My viral load started being detectable about three years ago. About the same time my CD4s were trending down. At 500 my doc suggested it was time to think about drugs. So I went on Atripla. Viral load is undetectable and I'm back up to the 700s.

As to when...don't think there's a perfect answer except don't wait till you're sick. Find out what the new guidelines are and talk with your doc about them. Figure out what you're comfortable with...I didn't mind not doing drugs since nothing was happening. But, once it did, I didn't hesitate. I went on meds. But that's how I decided to handle it.

Since you're on these boards I'd suggest reading some of the long term survivors stories and what they're dealing with. Might give you a better idea of what you need to decide about. My story is very different than most on here. These men and women have a lot of experience with the bad side. Take a few hours, read and learn from them.

Best of luck. Hope the good results last as long as they did for me.
Of course it's important. It's an email...

Offline BorbaColen

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Re: Undetectable without meds and have questions
« Reply #19 on: January 18, 2012, 10:26:34 PM »
2 doctors are following me, one in my town (this one sucks, I'm gonna change it) and the other in my parents tow (this one is great).


The first one just said "you are doing great, see you in 3 months". With the other, things were quite different.

He explained me that the HIV virus is really specific, as we all know, affecting only cd4 cells. Most of virus and bacterias attack cell communicating with them trough some proteins on their external surface, both the virus and our cell. This proteins work like a "key - locker" system, and the virus penetrates into the cell.

The HIV virus, however, is SO specific that it needs a second protein to help in this process. We produce this protein as a metabolic leftover, and it is free on our bloods. But some people just dont produce this second protein, or produces it differently, or very little of it, making the hiv virus useless and powerless in our bodies. So powerless that VL starts to drop and reaches UD.

We may be one of these people. Maybe the virus stays like this forever, or maybe it mutates and learn how to penetrate in our cells without this second protein, but this is  a very very slow processes, and this new virus replicates much slower. A third option is that for some reason we start to produce this protein as we get older.

Thats basically what he told me. That is the most common cause for or situation,but it could be anything, this is still something that needs lot of research. 

I hope I was not too messy. Did you get it?

Bests
 
~Borba~

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #20 on: January 18, 2012, 10:30:23 PM »
LongTimeSurvivor, thank you for your reply. When my first lab came, my ID doc also retested me because my VL was very low. The instant retest came back positive.

While I am glad that my latest VL shows UD, I want to get prepared whenever treatment is needed. I was actually prepared to start treatment on my second lab but my ID told me otherwise.

I will continue to do labs and monitor the numbers. Only time will tell.

Is it possible to have CD4 drastically decreased said in 3 months period between labs? That is what worries me the most.

Offline LongTimeSurvivor

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Re: Undetectable without meds and have questions
« Reply #21 on: January 18, 2012, 10:53:42 PM »
CD4s can vary from week to week...sometimes by hundreds. So just because you drop to 500 one time doesn't necessarily mean the end is nigh. I think you'd see more of a trending down over time. But...there's always that one person who doesn't fit what's expected.

The most important thing I think is for you and your doc to monitor your bloods. You might also want to change your diet...like drop the 500 cookies a week...and see if you can eat more healthy, if you don't already. Join a gym and exercise. All these things will help keep you as healthy as possible. And should things turn south, these same things will give you a better chance of holding up if they do.
Of course it's important. It's an email...

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #22 on: January 18, 2012, 11:01:06 PM »
Borba,

Thank you for explaining. I will ask my doc next time about it.

Offline logancircledc

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Re: Undetectable without meds and have questions
« Reply #23 on: January 19, 2012, 06:19:08 PM »
I have been poz since the 80s.  I took the old meds for a couple of years in the early 90s, but i stopped in 1994.  Since then, my CD4s have been between 550 and 1000 and my viral load has remained between 0 and 700.  I am in the Harvard study to; however, because i do show a viral load now and then, I cannot be classified as an elite controller.  Recently, my doctor has been suggesting that i might want to start treatment.  I don't know what to do.  It's been at least 25 years, and i feel fine.  I have never been sick, and the numbers are still quite good. 

Any other viremic controllers out there?  Are you taking meds?

Offline leatherman

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Re: Undetectable without meds and have questions
« Reply #24 on: January 19, 2012, 07:39:58 PM »
Any other viremic controllers out there?  Are you taking meds?
I don't think you can do both. ??? It would seem once meds were started, there would be no way to tell if a person's system was still keeping the virus in check or whether the meds were. Once you start meds, you'll be just like the rest of us.  ;D Otherwises we'd all become "viremic controllers" once we were on meds and UD. LOL
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline nvhorseman

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Re: Undetectable without meds and have questions
« Reply #25 on: January 19, 2012, 09:00:48 PM »
Jacken: I am not completely sure of this but I think you can have a genetic test done to ascertain if you are a single or double CCR5 elite controller. Ask your doctor. Good luck and be well.

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #26 on: January 19, 2012, 10:50:47 PM »
Jacken: I am not completely sure of this but I think you can have a genetic test done to ascertain if you are a single or double CCR5 elite controller. Ask your doctor. Good luck and be well.

nvhorseman, thank you for your suggestion. I will ask my doc about it.

Offline logancircledc

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Re: Undetectable without meds and have questions
« Reply #27 on: January 20, 2012, 12:40:14 PM »
That's a great way to think about it, Leatherman.  The goal is foir everyone with HIV to be a successful viremic controller -- either with or without meds.

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #28 on: January 22, 2012, 06:44:21 PM »
People with HIV typically have elevated CD8 levels. I think your doctor might have that checked out.

In routine blood tests for positive people, the ratio of CD4 cells to CD8 cells is often reported. This is calculated by dividing the CD4 value by the CD8 value. In HIV-negative people, this ratio is between 0.9 and 1.9, meaning that there are about 1-2 CD4 cells for every CD8 cell.

In HIV-positive people not on treatment, this ratio drops over time until there are more CD8 cells than CD4 cells (i.e. the ratio drops to less than 1.0).


http://i-base.info/qa/20

Is CD4/CD8 ratio same as helper/suppressor ratio? If so, mine is 0.78.

My CD8% is 39.5%

Should I be concerned?

Offline newt

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Re: Undetectable without meds and have questions
« Reply #29 on: January 22, 2012, 07:54:36 PM »
No, your CD4% is well good at the moment. A "normal" CD4% is between 30-32% and 68-70% << range depends on the lab

CD4:CD8 ratio in HIV-negative people is typically between 0.9 and 1.9, meaning that there are about 1-2 CD4 cells for every CD8 cell. No-one can say having a ratio less than 0.9 and being HIV-postive means worse health outcomes. They may speculate, but they can't say. There is no data on clinical outcomes for CD4:CD8 ratios that is sound enough to draw conclusions from.

- matt
"The object is to be a well patient, not a good patient"

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #30 on: January 23, 2012, 10:48:01 PM »
newt, thank you for your input. Always appreciated!

Offline newt

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Re: Undetectable without meds and have questions
« Reply #31 on: January 24, 2012, 06:23:50 AM »
Soz, read your post wrong, thought CD8% said CD4%

Normal range for CD8% is perhaps 8-10 to 36-38 or thereabouts

Whether you meant CD4% or CD8% I wouldn't worry about this set of results. If it's CD8% it probably indicates mild immune activation, which is not surprising given you have a long-term viral infection.

- matt
"The object is to be a well patient, not a good patient"

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #32 on: January 24, 2012, 06:26:13 PM »
No problem. I meant CD8%.  ;)

Thanks for clarifying.

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #33 on: April 23, 2012, 09:50:45 PM »
Got my latest lab and I am disappointed.

VL went from UD to 114
CD4: 445
CD%: 25

Given my trend in the past year since my diagnosis, the doc suggests that I start meds.

Any thought?

Offline LongTimeSurvivor

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Re: Undetectable without meds and have questions
« Reply #34 on: April 23, 2012, 10:10:01 PM »
Start meds. If you're healthy it's easier to take the stress the drugs put on your body. If you wait till you're sick then there's a chance you'll have more problems when you start the meds.

But...that's just my opinion...
Of course it's important. It's an email...

Offline tednlou2

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Re: Undetectable without meds and have questions
« Reply #35 on: April 23, 2012, 11:37:54 PM »
Got my latest lab and I am disappointed.

VL went from UD to 114
CD4: 445
CD%: 25

Given my trend in the past year since my diagnosis, the doc suggests that I start meds.

Any thought?

What has your trend been in the past year?  Is this just one "off" lab, or you do have a trend of lower and lower CD4 counts and percentages?   

Offline leatherman

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Re: Undetectable without meds and have questions
« Reply #36 on: April 24, 2012, 12:37:50 AM »
if your cd4s have been trending down (besides the 667 to 445) and if your cd% has been trending down, then yes, you're probably at the point of taking meds. Hopefully you realized that this day was coming anyway. It comes sooner or later for every pozzie. Although it's an important decision don't give HIV more credit than it's due. (or give the worry about side effects more power than it deserves. Side effects are highly over-rated starting meds in the 2010s ;) )The meds are your friend; HIV is not. As LTS said too, better to start them sooner (ie now) rather than allow HIV to continue damaging your immune system
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #37 on: April 24, 2012, 09:33:01 PM »
LongTimeSurvivor and leatherman, thank you for your inputs. I am leaning toward to starting the meds.

What has your trend been in the past year?  Is this just one "off" lab, or you do have a trend of lower and lower CD4 counts and percentages?   

These are the last four lab results starting from the earliest one.

CD4: 493 /  VL: 297
611 / 235
667 / 158
667 / UD

The latest one is  445 / 114.

The last month has been really stressful because of relocation. Is this really one off lab?

Offline leatherman

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Re: Undetectable without meds and have questions
« Reply #38 on: April 25, 2012, 12:08:30 AM »
Is this really one off lab?
in the big scheme of things, your labs really aren't that dramatically different. The difference to pay attention to is a log change (a factor of 10). for example if your VL went up to 1,140 or 2970, then you would be experiencing a serious change in viral load. Used to in the not-so-distant-past (like 5ish yrs or so) 400 was considered undetectable :o ;D so the flux between 300 and 100 in viral load is nothing.

the cd4 change isn't much to write home about either. cd4s can change by up to 100 per day (highest counts are around 4-8pm with lowest counts from 8a-noonish). So the 650 to 450 change in cd4 could be because one test was in the late afternoon, while the next was in the morning, along with a 100pt daily change (influence by rest, food, exercise, etc) resulting in that 200 difference not really so dramatic either.

plus you should be looking at the trends across 3 tests at least. So if you graph out these five test results you've posted, you should almost be looking at flat lines. take a glance at the graph in my sig line. See those early "bad" years? crazy up-n-down graphs are bad. See how the lines nearly flatten out in the 2nd half of the graph? (which I should point out has "blips" from 2700 to 5300 in viral load! LOL) those nice nearly flat lines are good. And that's about what you have with your numbers


here's a sample graph of your numbers. I didn't have any dates, so realize that adding a time factor to this would stretch out and flatten these lines even more. Pay attention at how your cd4 has almost made no cumulative change, while your VL has dropped and only barely risen.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #39 on: April 25, 2012, 12:47:39 AM »
leatherman, thank you so much for your detailed explanation and the graph. Your chart in those early years does look crazy. My doc was concerned that even though my body seems to control the virus, it does at the expense of CD4 based on the CD4%.

Other than the first two which were a month apart, the rest were were about three months apart.

Would you suggest that I wait and see for another lab in three months?

Offline leatherman

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Re: Undetectable without meds and have questions
« Reply #40 on: April 25, 2012, 03:39:57 AM »
Your chart in those early years does look crazy.
those crazy spikes are from dealing with the early meds. AZT mono therapy kept me alive, barely, puking throughout the day every day, till the anemia almost killed me. (later they learned how they were overdosing the heck out of people with azt). later came sustiva, with the horrible nightmares every night, puking every day, dizziness that never ended until I quit working and driving. That lasted for 9 months, not because I liked it, but it kept me alive until another med came to market. Oh it was hell in those early days, always running out of meds to take because of resistance or terrible side effects.

But while everyone I knew back then died from AIDS or passed away because they weren't able to deal with long term effects of HIV and too short of time with the meds, I hung in there somehow. And glad I am to. After all that craziness (things like 28 pills a day, meds every 4 hrs night and day, refrigerated meds, meds that had to be ground up from huge chalky tablets to be able to take, meds based on ethanol -- and all that puking. I swear almost every med has made me puke), I finally got onto Reyataz, norvir, and truvada and after a few years, I can now say I'm healthier than I've been in decades - too bad age is creeping up on me now that I just turned 50 after being so sick through my 30s and 40s. LOL

that story is why I just can't stress to you how much better today's meds are and how you should be happy to be able to access the meds of today when the time comes around - and it will come around sooner or later. ;)

Would you suggest that I wait and see for another lab in three months?
that's for you, with your doctor, to decide. ;) I can tell you stories about the bad ol' days, tell you about how many great options there are today, tell you all about graphs and percentages, but it's going to come down to you being ready. You know the numbers are edging that way. You know the disease is going to make treatment necessary. The good thing is your numbers are not horrible and you're not sick, so there's time to think about it and decide whether you have the determination to start now or a little bit in the future along with having the support of friends, your doctor, your insurance or however you'll be getting access to the meds.

think about the trends and think about your doctors advice.  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #41 on: April 25, 2012, 09:41:03 AM »
leatherman, I can't even begin to imagine what you were going through. Great to know that you are much healthier now. You are right about the treatment options these days. For sure I appreciate how much the treatment has advanced and your experiences.

I know I will need treatment sooner or later. Part of me thinks I should start a treatment but part of me thinks I should wait until it is necessary. That is the dilemma.

 

Offline eric48

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Re: Undetectable without meds and have questions
« Reply #42 on: April 25, 2012, 05:50:15 PM »
the free article:

https://www.interllective.com/pubmed_open/article/3141501/related

CD4saurus Rex &HIVelociraptor vs. development of
clinically useful immunological markers: a Jurassic
tale of frozen evolution

provide a list (at the end) of tests that could be fairly good predictors about long term ability to control the virus.

If I were in your case I would ask for :

CCR5-∂32, CCR2-64I At diagnosis. Presence. Slower disease progression, lower VL [71]
Before cART Less time to undetectable VL, decreased risk of AIDS [72,73]

and PBMC
HLA-Bw4 (incl.HLA-B*57,
HLA-B*27)
HIV infection, At first diagnosis Presence. Defines lower risk of progression, chances of Elite
Controlling, slow progression, lower VL

about 1% of caucasians have inherited CCR5-∂32 from both parents (which provides the best protection), and 4-5% from only on parent , which provides some (limited) protection. Still an open question.

Might be interesting for you to know a bit more about the possible cause for your possible free membership to the Elite club. test might be expensive and not covered by insurrance, but knowledge is power and membership to the non-controllers does not come free ;-)

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline jacken

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Re: Undetectable without meds and have questions
« Reply #43 on: April 25, 2012, 11:38:50 PM »
Eric, thanks for the info. I will ask my doctor about them. Can you please elaborate the quote below. What do you mean by free membership to the Elite club?

Might be interesting for you to know a bit more about the possible cause for your possible free membership to the Elite club. test might be expensive and not covered by insurrance, but knowledge is power and membership to the non-controllers does not come free ;-)

Eric

Offline eric48

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Re: Undetectable without meds and have questions
« Reply #44 on: April 26, 2012, 04:28:10 PM »
elite controllers do not have to worry about the medication cost ;-)

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

 


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