POZ Community Forums
Main Forums => Living With HIV => Topic started by: aupointillimite on January 30, 2007, 12:02:34 pm
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I just called to get my results... and while the viral load isn't back yet... it's pretty clear to me that the meds ain't workin. CD4s at 435 and 29%. Which is what they were in September...
I'm thinking Benj caught a resistant virus. Whoo hoo! I hope it's just to the Sustiva or Truvada and not other things.
How nice. No, really.
They said they'll know more when they get the viral load... but as of right now, it looks like I'll have to have another appointment sooner rather than later... so they can do some genetic brouhaha fun testy thingies.
On the bright side... my liver and kidney function is perfect. I don't know exactly why... And what does that mean to me? I am clearly not drinking and drugging enough. ;)
I'm not really upset about it... I mean, it's kinda crap... but yeah.
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Hey whats up. I hope things get better for you. I have to go to my very first dr appt this coming monday. I am sure there will be plenty of tests that they want to run. This is my first time to the hiv dr so I have no idea what to expect
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Hey whats up. I hope things get better for you. I have to go to my very first dr appt this coming monday. I am sure there will be plenty of tests that they want to run. This is my first time to the hiv dr so I have no idea what to expect
Thanks, dude... I'm kinda wishin' they'd done a resistance profile thing from the get go... but when I was first diagnosed, I was shuffling back and forth all crazy fast between my primary care doc, and a bunch of ones at the clinic... and someone probably forgot to order one, or someone didn't send results or whatever... or my insurance company balked at paying for it.
I didn't think to ask about it... hmm.
Who can say?
It's all water over the dam at this point. ;D
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I have gotten over the whole shock of things and have some friends here that are poz and been there for me when all of the questions came up that I had. Of course I have met a couple of guys that I have liked and when that little bit of information came up they were up and gone. That part sucks. I look good and am in good shape but I guess I understand their fear. Guess I need to find another poz if I want to get laid again lol ;D
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Hey Guy,
I am shocked I'm hearing so many like you who haven't had a genotype run. That's BS and it should've been done before any meds.
That was one of the first things my prior doctor did. Luckily, it all came back good, but he said they aren't always accurate.
How come your VL is not in? I keep hearing this a lot. I'd wait to see that cause maybe there are some major changes, but yeah that would stress me out too.
Hope it turns out well.
Wesley
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I just called to get my results... and while the viral load isn't back yet... it's pretty clear to me that the meds ain't workin. CD4s at 435 and 29%. Which is what they were in September... I'm thinking Benj caught a resistant virus. Whoo hoo! I hope it's just to the Sustiva or Truvada and not other things.
How nice. No, really.
They said they'll know more when they get the viral load... but as of right now, it looks like I'll have to have another appointment sooner rather than later... so they can do some genetic brouhaha fun testy thingies.
On the bright side... my liver and kidney function is perfect. I don't know exactly why... And what does that mean to me? I am clearly not drinking and drugging enough. ;)
I'm not really upset about it... I mean, it's kinda crap... but yeah.
Give yourself a break. After all, it's after the viral load drops that your CD4s rebound... and, besides, other things impact CD4s like other active infections which would throw the numbers off and not in your favor. Also, since you don't have a pre-HIV CD4 test to compare, this could be 'normal' state for you, but it's most likely just the lag between viral suppression and immune system rebound.
Of course, you could have bugs that are resistant to Sustiva, Emtriva and Viread, but then your CD4s should have declined even more, then you'd really bitch! And we wouldn't want you to feel that special either, having bugs with so many mutations! :-X
Hang in there and don't jump the gun..... and slap the doctor up side the head for me for giving you half the lab results, prompting unnecessary worry.
Cheers,
David
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Hey Guy,
I am shocked I'm hearing so many like you who haven't had a genotype run. That's BS and it should've been done before any meds.
That was one of the first things my prior doctor did. Luckily, it all came back good, but he said they aren't always accurate.
How come your VL is not in? I keep hearing this a lot. I'd wait to see that cause maybe there are some major changes, but yeah that would stress me out too.
Hope it turns out well.
Wesley
The viral load has to be sent out somewhere, and it takes longer... I'll know on Thursday.
I can't really stress over it... I should've bitched and screamed for a resistance profile before taking the meds... but I didn't. Probably because I didn't want to hear potentially bad news. Hmm.
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I will make sure I ask my doctor about this test since it will be my first time. My new doctor is openly gay and I have heard that he is pretty good. :'(
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Let's wait till Thursday then, Benj, before coming to any kind of conclusion about the success (or lack) of Atripla. I'll let the experts weigh in on this, but if you have a stable percentage and maximal viral suppression, that might not be bad news -- it might in fact be good news.
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Heck, hon...hold the phone. Stop the presses. This doesn't sound like anything to worry about to me at all...at least not yet.
Can I make a little reminder statement here? If you recall some people (*cough cough* ME *cough cough*) were already a bit astounded that you were starting meds so early to begin with. You are aware, I'm sure, that some people's normal range is below 500 anyway- HIV or not. Also, it can take awhile for VL to hit that magic undetectable place (many on here are still waiting for that day)...it took me many, many months for it to happen. Both VL and CD4 counts are sunject to fluctuation- and the results you get are for those particular vials of blood you submitted. As in...if they sucked the blood out of you a minute or two before or after, there may very well have been a different read. Stuff doesn't flow precisely uniform throughout the body. Also, CD4s can take a little while to start the upward climb anyway.
Not really trying to pooh-pooh your concerns, but...never mind. I am trying to pooh-pooh your concerns- at least for now. ;D Yes, wait for your results on VL and continue to monitor the situation. But if it was me, I wouldn't be giving it very much thought at all yet. We from the double-digt t-cell experience are still jealous as all hell.
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The viral load has to be sent out somewhere, and it takes longer... I'll know on Thursday.
I can't really stress over it... I should've bitched and screamed for a resistance profile before taking the meds... but I didn't. Probably because I didn't want to hear potentially bad news. Hmm.
You sure they didn't screw up and give you a placebo?
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Heck, hon...hold the phone. Stop the presses. This doesn't sound like anything to worry about to me at all...at least not yet.
Can I make a little reminder statement here? If you recall some people (*cough cough* ME *cough cough*) were already a bit astounded that you were starting meds so early to begin with. You are aware, I'm sure, that some people's normal range is below 500 anyway- HIV or not. Also, it can take awhile for VL to hit that magic undetectable place (many on here are still waiting for that day)...it took me many, many months for it to happen. Both VL and CD4 counts are sunject to fluctuation- and the results you get are for those particular vials of blood you submitted. As in...if they sucked the blood out of you a minute or two before or after, there may very well have been a different read. Stuff doesn't flow precisely uniform throughout the body. Also, CD4s can take a little while to start the upward climb anyway.
Not really trying to pooh-pooh your concerns, but...never mind. I am trying to pooh-pooh your concerns- at least for now. ;D Yes, wait for your results on VL and continue to monitor the situation. But if it was me, I wouldn't be giving it very much thought at all yet. We from the double-digt t-cell experience are still jealous as all hell.
I know, I know! :D
I wanted to start meds early... I totally agreed with my doc, especially the research coming out now that seems to indicate that starting early is probably more beneficial...
And please pooh pooh (actually, say "pish tosh" to them... because saying "pish tosh" is fun) my concerns. I'm a Worst Case Scenario-izer (read that: I'm part Jewish)... because that way when something not as shitty happens, I'm pleasantly surprised, and it's not that horrible. It's a cynical coping mechanism.
I don't mean to try and make anyone jealous... I know you know that's not my intent at all... but after having coasted along at above 500 CD4s for so long... the dip (and subsequent staying there) to the "below normal" range has been somewhat disconcerting. I'll admit it.
It doesn't play well to my "I'm in my 20s and invincible" thing very well... I wish my body would look into cooperating with that.
Edited to Add: My liver is cooperating very well. I seem to have, and I'm not exaggerating here, the most punk rock liver ev-ar.
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Ok guys some advise please. 6 months ago I was neg. 2 months ago poz. My first dr appt is this Monday. Any ideas what I should expect? Do you guys think I will go on meds right away?
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One more thing, about the liver and kidney function tests. In an avuncular and totally affectionate manner (I hope you know that), I'll do a bit of pooh-poohing, but in the opposite way. Those tests are... well, not exactly super-specific or super-sensitive. (Anyone, please correct me if I'm wrong.) Apparently, these tests can show normal ranges for quite a while when in fact some damage is "secretly" going on. I know my doc always reminds me of that every time I have to answer "How many units of alcohol do you consume a week." The poor woman always looks shocked.
Daddy Jay
(who is NOT preaching)
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Ok guys some advise please. 6 months ago I was neg. 2 months ago poz. My first dr appt is this Monday. Any ideas what I should expect? Do you guys think I will go on meds right away?
Hey Indy,
No way will they start you on meds right away in my opinion. You should start a new topic on this cause Benj is gona be mad you are stealing his limelight ;)
If you were this recently diagnosed and neg. just 6 months ago I can't imagine them saying to take meds at all. They will run a test for your Viral Load and CD4 counts. Make sure to ask them to run a genotype too.
From everything I've heard often initial viral loads can be really high. Most of the doctors will want to see a trend in your counts before doing anything.
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Thanks and sorry Benji.
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One more thing, about the liver and kidney function tests. In an avuncular and totally affectionate manner (I hope you know that), I'll do a bit of pooh-poohing, but in the opposite way. Those tests are... well, not exactly super-specific or super-sensitive. (Anyone, please correct me if I'm wrong.) Apparently, these tests can show normal ranges for quite a while when in fact some damage is "secretly" going on. I know my doc always reminds me of that every time I have to answer "How many units of alcohol do you consume a week." The poor woman always looks shocked.
Daddy Jay
(who is NOT preaching)
But my liver sent me a note.
It said...
"Dear Benj,
Hi! How are you? I am fine. I really loved the massive quantities of whiskey we enjoyed last night! Thanks for buying my drinks for me! Don't listen to anyone sensible... I'm hardcore. Like porn. Only more filter-y. I'm glad to be an integral part of such a perfect specimen of humanity.
Love and kisses,
Your Liver
Stay sweet!"
And if that's not sensitive, I don't know what is... ;D
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Those numbers aren't so bad. They haven't gotten any worse, so at least some / one of the drugs is likely working. I do know some people take longer for their numbers to change. My hubby's viral load dropped a lot more than mine but my CD4's and % rose more, so who can tell.
I'm also surprised that tests weren't run prior to starting meds. Of course, some insurance won't cover these tests, so maybe that's why. My Dr. ordered genotype and phenotype tests months ago and showed no resistances, so hopefully Atripla will continue to work for me. When I read the subject, I thought maybe Atripla was playing some nasty tricks on you (shitting the bed and all)! :)
David
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Hey Indy,
No way will they start you on meds right away in my opinion. You should start a new topic on this cause Benj is gona be mad you are stealing his limelight ;)
Naaah... I'm not that much of an attention whore. Wait... I am. I really don't mind the hijackings at all... I like it when my threads wander here and there.
But indy, you're a lot more likely to get responses to your questions if you start your own thread...
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Yeah, I agree Indy. You got a unique situation and would get all kinds of input if you posted it as a topic.
I'm still waiting to hear if you weren't drunk and accidentally signed up for some blind study clinical trial Benj?
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Yeah, I agree Indy. You got a unique situation and would get all kinds of input if you posted it as a topic.
I'm still waiting to hear if you weren't drunk and accidentally signed up for some blind study clinical trial Benj?
I probably did! ;D
I was wondering my Atripla tasted like sweet, delicious candy!
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Every one has already given you some sage advice. I would just sit tight and wait until Thursday comes. Also, stress does no one any good other than a cardiologist so just chill (easier said than done).
Hugs...
Tom
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I'd encourage you to wait for the results of your viral load test. When I started meds
3 years ago (Sustiva/Viread/Emtriva -- same as Sustiva/Truvada and Atripla), it took more
than a year for my CD4 and % to show any noticeable increase. But my viral load was
and so far is undetectable (knock on wood), and eventually both my CD4 and % increased
(CD4 from 275 to 632 and % from 16 to 22). From what my physician tells me, it can
take a while for your immune system to start getting back in shape once viral replication
is under control.
I'd suggest hanging in there, at least until you get the results from your viral load test,
and if that looks good, you may want to consider continuing with Atripla. It's a shame
your physician didn't offer you any explanation/advice, and didn't want until all your tests
results were available.
Regards,
Henry
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Hiya Au~~
I really have to agree with what folks are saying here, nothing really that I could even add. I just came back in from getting drained. I always seem to think the worst til I hear the news, I don't know why I do it, maybe it's to soften the blow if the news comes back bad. I am surprised that you started meds so early but I guess you wanted to kick ass first and ask questions later... ;D
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Ok guys some advise please. 6 months ago I was neg. 2 months ago poz. My first dr appt is this Monday. Any ideas what I should expect? Do you guys think I will go on meds right away?
Between that and the snowflake in Hell, I'd probably bet on the snowflake. That would be one SERIOUSLY active virus to require that kind of thing to occur. I don't think I have ever heard of any such as that. If you've been poz for less than 6 months, you're gonna get an overall physical evaluation and blood draws to guage where your VL and CD4's are precisely. You'll probably also fill out a good bit of paperwork if this is your typical ASO you are visiting.
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Dont sweat it my numbers went from 176 to 166 and hovered around there. My percentage jumped to 31% from 23 and back to 23 in 2 mons of Atripla. The one constant is my VL dropped to 131 then undetectable.
AFter much frustration and posting here and on TheBody.com The lower you're CD4 count the longer it takes to recover or get back to a normal range
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I don't understand the "sweat" factor in this thread myself. 1) you've not gotten your VL back, 2) you're numbers did not decrease, they stayed the same.
With this incomplete snapshot we can infer that the medication is working at least somewhat. If you'd not gone on it your numbers would be even lower. Sometimes it takes a while to start going up, first the medication needs to halt the slide, then stabilize it, THEN increase it.
Of course, if your VL comes back and it's crap this is another story, but in the absence of these numbers I would not lose any sleep.
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I just called to get my results... and while the viral load isn't back yet... it's pretty clear to me that the meds ain't workin. CD4s at 435 and 29%. Which is what they were in September...
I don't think that 'we' know anything yet. You are on meds which, hopefully, were selected on the basis of genotyping to see which group would work best or which would show resistance (although this may not have happened). Your cd4's are where they were but you don't know what your viral load looks like (until Thursday). My cd4's have always been in the 400's, that's for the past 23 years, going up and down in exact balance with the cd8's. So I, too, would say let's wait for more info.? Win
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I really do appreciate the words of experience, you guys... thank you!
I guess I was expecting something a bit more than "more of the same" from my first on-meds labs.
Le sigh.
I'll post the viral load when that comes around.
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The only way to know if the meds are working is to have your VL counts. The meds only stop the replication of HIV but do not improve CD4 counts, so maybe they are working and you are even undetectable. In fact, my first tests after starting meds was only a VL count a general bloodwork without cd4 counts.
I did not get a resistanace test done before meds as my Dr. considered it was only useful in recent infections and mine is 4 or 5 years old.
Tomorrow I will know my second labs after starting meds... :-[
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Please read my numbers below and be underwhelmed - Ive been on neds for years have no resistances and my tcells never have gotten above 435 and my percent never above 25. The damage seems permanent and a slow decline may have set in. From where Im sittin youre sittin pretty.
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Yeah it's too early in fact you're number could increase with time. I've seen some people with remarkable rebounds in a short time and some not as fast. Everyone is different.
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Im with the others.. so your cd4 didnt budge.. it's happens.. it certainly doesnt mean you are resistant.. hell, some peoples cd4 counts go down and it doesnt mean they are resistant. cd4's dont always go up ya know princess... Get your VL back and then you'll know if atripla is working or not. ;)
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Im with the others.. so your cd4 didnt budge.. it's happens.. it certainly doesnt mean you are resistant.. hell, some peoples cd4 counts go down and it doesnt mean they are resistant. cd4's dont always go up ya know princess... Get your VL back and then you'll know if atripla is working or not. ;)
But I'm impatient. ;)
Why can't my damn labs cooperate with this personality flaw?
Why? WHY?
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But I'm impatient. ;)
Why can't my damn labs cooperate with this personality flaw?
Why? WHY?
I'm with you. Why can't they simply have some kind of HIV glucometer? Hmm? I freaking hate that 2 week waiting period.
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But I'm impatient. ;)
Why can't my damn labs cooperate with this personality flaw?
Why? WHY?
CD4 counts are not really indicative of how much the virus has damaged you're system The Lymphocyte % is the main number you want to look at then the VL. CD4's go up and down like the stock market.
29% is not bad for a percentage its actually decent for POZ
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;) jumping to conclusion can be bad exercise. >> keep the faith brother. what vl would you like to see?
>
>>"he decided to live for ever or die in the attempt" joseph heller
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I'm with you. Why can't they simply have some kind of HIV glucometer? Hmm? I freaking hate that 2 week waiting period.
Seriously... I have a list of demands for my HIV. One is that it reveal its own viral load a bit more quickly... perhaps in the form of a digital readout on my forehead. The other is that it bake me cookies at least once a week.
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hang inthere
i think you'll be pleasantly suprised with your next medical update
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I'm with you. Why can't they simply have some kind of HIV glucometer? Hmm? I freaking hate that 2 week waiting period.
I've thought of that, too. (Since my mother has diabetes). I think that might be available sometime down the road.
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I've thought of that, too. (Since my mother has diabetes). I think that might be available sometime down the road.
Screw the glucometer!
Cookies, people.
Delicious HIV cookies.
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Hey Benj,
Take it from a long-timer. The whole journey of HIV meds and testing is bit of a roller coaster ride. I wish I could tell you it gets better, but for me, it hasn't...though it isn't quite as jagged. I think you sort of get immune to the push-pull shock of it all but I still get a little nervous each time (usually a few days before) I go the doctor. Actually, I just went today for a blood draw. It's the first since my recent crash on Videx and my new relationship with Ziagen. Physically, I feel fine and now that the visit is over, I'm good. The waiting isn't so bad for me. And don't freak too prematurely on any test result...don't forget about the possibility of "blips" in the testing.
Anyway, I know you will eventually bitch slap that virus right down into HELL....where it belongs. And you will be dancing around a fire like the sexy little Satyr that you are....soon enough!
Brooks
PS In the event that your HIV cannot bake cookies for you, I'll be happy to bake them for you, throw them right on the kitchen floor while they're good and hot, and roll around in all of that hot gooey mess with you. DELICIOUSLY different, n'est-ce pas?
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Hey Benj,
Take it from a long-timer. The whole journey of HIV meds and testing is bit of a roller coaster ride. I wish I could tell you it gets better, but for me, it hasn't...though it isn't quite as jagged. I think you sort of get immune to the push-pull shock of it all but I still get a little nervous each time (usually a few days before) I go the doctor. Actually, I just went today for a blood draw. It's the first since my recent crash on Videx and my new relationship with Ziagen. Physically, I feel fine and now that the visit is over, I'm good. The waiting isn't so bad for me. And don't freak too prematurely on any test result...don't forget about the possibility of "blips" in the testing.
Anyway, I know you will eventually bitch slap that virus right down into HELL....where it belongs. And you will be dancing around a fire like the sexy little Satyr that you are....soon enough!
Brooks
PS In the event that your HIV cannot bake cookies for you, I'll be happy to bake them for you, throw them right on the kitchen floor while they're good and hot, and roll around in all of that hot gooey mess with you. DELICIOUSLY different, n'est-ce pas?
Dude... that sounds like a baking extravaganza from Julia Child's wet dream! Let's do it!
I know it's a roller coaster... I know... I've been on the damn roller coaster... but I was up in the peakies of "above average CD4s" for so long... I want to be there again... I know I should be happy with my results for what they are, and I know they're awesome by themselves... but they're not what I'm used to.
Although I'm getting used to not getting used to anything.
Although dancing around the HIV bonfire like a Satyr is something I could totally get used to...
Oh yes.
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Look on the bright side. At least you seem to be maintaining. The only thing I can think of is that the alcohol may be hindering your progress. Like the others I am jealous of your numbers. And like the philly said, your viral load is an important part of your profile. Don't stress as this is bad for your immune system. But you seem in high "spirits." ;)
rob
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Hey Benj,
As others have said -- don't fret until the VL is in. You may be pleasantly surprised.
However, if you want -- we can start a Richmond group for those whose virus seems to like Atripla!!! ::)
I'm sending happy thoughts your way -- even to your liver!!
Mike (who lacks the patience gene also)
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Hey Benj,
As others have said -- don't fret until the VL is in. You may be pleasantly surprised.
However, if you want -- we can start a Richmond group for those whose virus seems to like Atripla!!! ::)
I'm sending happy thoughts your way -- even to your liver!!
Mike (who lacks the patience gene also)
Atripla: It's like sea monkey food... but for HIV. Richmond chapter.
I could get in on that! ;D
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Look on the bright side. At least you seem to be maintaining. The only thing I can think of is that the alcohol may be hindering your progress. Like the others I am jealous of your numbers. And like the philly said, your viral load is an important part of your profile. Don't stress as this is bad for your immune system. But you seem in high "spirits." ;)
rob
See Benj, we all know you're a big ole lush ;) Hmm, Rob may have a point, but every time some one tells me to not stress out and don't drink I think, but I'm Irish. That's like going against my religion!
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See Benj, we all know you're a big ole lush ;) Hmm, Rob may have a point, but every time some one tells me to not stress out and don't drink I think, but I'm Irish. That's like going against my religion!
See, people telling me not to drink stresses me out.
And I'm gonna be a lush, for Chrissake... the last time you goyim told my people it was gonna "be OK," you were shipping us to Bergen-Belsen!
I need to drink to make it OK!
;D
This is clearly a joke.
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Aupoint,
I never said that I was not a big ole lush or at least had my share in the past, having the medst work to their fullest potential is my biggest incentive to lay off of the booze though.
So yes, I knew my post was going to be taken as a big "Duh." But then again, as I said in my post I am in far worse shape than you are, and it might be uh, suicidal for me to drink as much as you say you do. So I choose not to drink at all. Thankfully, I am able to choose.
And my liver was not writing me love notes. It turns out I never had damage from drinking. The damage was from antibiotics that did save my life but also took their toll. So for me, it is a choice of saving my liver for the toxicity of the meds, nothing moral about that. I wish I could still have a drink of gin or eight like you say. One of my best times was doing just that in London Club few years ago. But I can't and remain hopeful that the meds will keep working.
As you have done with all posts I have written, you can take them with a grain of salt....and lime of course. ;)
rob
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Obviously the alcohol intake issue is going to be very different for those at sub-200 counts than, say over 350. This goes for a lot of activity. It's all relative, just like being a lush one/week is different than every day.
I will add one thing though, if you're predisposed to alcohol PLEASE make sure you do not have Hep-C or you're basically throwing gasoline on a fire.
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The judgement on whether treatment is working is based on drop in viral load, not on CD4 count gain/loss, so you know nothing til that comes back, and it is wrong (for your doc to suggest?) that you look or wish for more CD4s as proof the 3-in-1 bomb works, indeed you are unlikely to see a massive increase given you have such a high count to start with. Plus, desirable as a great bunch of T cells may be, strictly speaking it ain't necessary to be healthy.
- matt
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