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Author Topic: Tested + last week, really need some guidance on this...  (Read 13414 times)

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Offline lincoln6echo

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Tested + last week, really need some guidance on this...
« on: September 05, 2012, 10:12:51 PM »
Hi
I tested positive last week by means of the rapid test.  Here in Canada, it's available at the local STD clinic (at least in my city) and I had two dots (meaning you are positive, one dot, negative.)  I asked the nurse to do it twice to make sure, still two dots.  It's not a saliva test but a blood test. 

I was dumfounded, but in a way not surprised and since I was tested in June and negative at that time, I pretty much can narrow down when and with who etc..so it's been only two and a half months at the most. 

I've been in a blur for the past week and have read almost every thread I can and appreciate all the upbuilding encouragement from you all.  I have felt and continue to feel all the range of emotions that all of you have talked about who are newly diagnosed.  It's all most too much to handle.

The day after I was diagnosed I went and saw my Doctor who was great.  We are waiting for the other blood tests to come in showing CD4, Viral load etc. 

I also went to see a peer counsellor a earlier this week to get some perspective.  I'm not about to throw myself out the window, but I'm distraught nonetheless. 

A couple questions though for my specific situation:

Although I am in relatively good health, (non smoker, non drug user, rarely drink) not overweight,  I have had another condition since January where the body produces too much CSF fluid and cramps the brain.  This condition is slowly getting better but has definitely worn me down this past 9 months.  Also, I'm not on meds for depression or anxiety or anything else for that matter other than the med I take for the CSF situation (that's a lie, I take zopiclone now and then to help me sleep and tylenol for pain) but I have in the past and am prone toward anxiety.  I over think, loose sleep, kinda get OCD'ish with my thoughts, can't get out of my body kinda thing. 

Right now I'm terribly tired but can't sleep so I take a half pill of zopiclone to help me get to sleep at night.  The reason I went and got tested is I have swollen painful glands in my neck, feel really stiff in that area, swollen glands in my groin area, have dry eyes and have that feeling just like you do before a full blown flu or cold, but it kinda just stays like that.  I have a headache and nausea but that's part of the condition with the CSF thing, so i'm not sure if it's related to getting HIV or not. 

I have had bronchitis in the past and get a cold/flu every year pretty much. 

I think my immune system is quite worn down as it is, even before getting infected with HIV, so i'm kinda freaking out about what my #'s are going to look like, which I should get by the end of this week. I won't be surpised if they are really low.  I seem to have a pain in my upper left chest area and I've had a persistent cough for a month.  No mucus or blood or anything like that tho coming up.

It might be psychosomatic but i'm thinking not.

If anyone can shed some light if you experienced similar and some general encouragement, I'd really appreciate it.

Thanks for reading.








Offline leatherman

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Re: Tested + last week, really need some guidance on this...
« Reply #1 on: September 05, 2012, 10:52:49 PM »
Hi
I tested positive last week by means of the rapid test.  ...
The day after I was diagnosed I went and saw my Doctor who was great.  We are waiting for the other blood tests to come in showing CD4, Viral load etc. 
actually, you're also waiting for a confirmatory Western blot test to confirm that you actually are positive. Although the rapid tests are very accurate, a positive result has to be confirmed by the more precise western blot test. However, with the high accuracy of the rapid test, your doctor is moving on forward testing for the cd4 count and viral load.

A couple questions though for my specific situation:
he he he. You never asked any questions ;D however, let me say this about what to expect. If your blood tests warrant it, you'll soon be prescribed medications to knock down that viral load and let your immune system get to rebuilding itself and get to fighting those other health problems you're having.

Lots of people have been where you are now. Some of us (a third!) were in the hospital very ill with opportunistic infections threatening our lives when we got our diagnosis. Others were luckier and found out sooner, thereby tackling the HIV before it was able to knock them down. In the end almost all of us have gone or will go onto meds, that's the only way to do anything about the HIV.

And thank goodness for the meds here in 2012!! They are nothing like AZT or zerit or any of the older ones with all the bad side effects. Why short term side effects happen to less than 10% of patients and long term side effects happen to 4% or less. Odds are in your favor that starting meds will be a very good thing.

So the bad news is that you slipped up and now you're infected with HIV. The good news is that there is 30 yrs of science and medical advancement out there now with tried and true drugs that'll help keep you healthier and able to live your life doing the things you want and need to do.


so as we say around here, I'm very sorry that you've had to come here (we'd all prefer that no one else was infected); however, we're glad that you found us. There's a lot of good information at this site (read through the Lessons section) and a lot of good people who will be willing, and eager, to give you some support and encouragement ;) so, welcome to AIDSmeds!
leatherman (aka mIkIE)


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

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #2 on: September 06, 2012, 01:11:06 AM »
Thanks for responding so quickly and for the helpful info, and yes, I suppose I forgot to ask the question didn't I? :)

Questions then:

Since it's only been over two months that I was infected, is it possible to get an OI this fast? 

Does what I describe sound like seroconversion symptoms and if so, do people usually wait until after seroconversion to start meds to get a better reading on the bodies natural ability to heal itself?

Offline leatherman

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Re: Tested + last week, really need some guidance on this...
« Reply #3 on: September 06, 2012, 01:59:09 AM »
Since it's only been over two months that I was infected, is it possible to get an OI this fast? 

Does what I describe sound like seroconversion symptoms and if so, do people usually wait until after seroconversion to start meds to get a better reading on the bodies natural ability to heal itself?
first off, not everyone has seroconversion symptoms that they even notice, your issues could just be some sickness your body is dealing with. OI's happen when the immune system is pretty damaged (cd4s<200) which usually happens after yrs of being infected with HIV. Medications aren't started until a person's cd4 are <350 (though it's looking like that will be bumped up to 500), with an elevated viral load, and/or an OI.

take a look at this chart

it shows that in the initial stages of infection, the cd4s decline somewhat while the viral load spikes. After several weeks to months, the cd4s recover somewhat and the viral load drops. After that things go along for a long time, as in years. Then the cd4s began to fall again, and the virl load rises.

if you truly are in those very early stages, you might have some distressing numbers; but after things level out, you may very well go years before meds become an issue. Regardless of what stage you are currently at, there's something important to learn right now about watching and tracking your HIV - it's all about the trends! a one time test tells you nothing (often because the cd4 count can fluctuate by 100 in just one day!). To really know what's happening, you need to see what the trend of the cd4 count and viral load count is over at least 3 tests - and often tests are done 6 weeks apart (that frequent often when people are new patients or when they are sick) to 6 months apart. But don't worry, HIV isn't like insulin where a drop of 200 in a 24 hr period could kill you. There's always plenty of time to get multiple tests over 2-3 months before really knowing if your counts are going up or down.

one other quick point, the body doesn't naturally heal itself when we're talking about HIV. The only thing that will stop HIV are the meds. period. Then when the meds are working, your immune system can recover - and there's no magic bullet to help that cd4 recovery either. Not knowing your pre-HIV cd4 count, there's no way to know what a "normal" count for you is. it could be anyway in a range of 400 - 1500. :o The only way to deal with HIV is to wait until you hit the right time to start treatment, then start treatment, and remain adherent to that treatment.

I could tell you about the low odds against short term and long term side effects, and all that stuff; but you're probably so far away from starting meds right now that you've got plenty of time to read through those Lessons, to learn more about HIV and to hear more from your doctor before you need to worry about what meds to take or what effects you might have to deal with. ;) :D
leatherman (aka mIkIE)


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

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #4 on: September 06, 2012, 01:49:13 PM »
Thanks again for the info.

SO..got the call with my results today.

CD4 = 360
VL = 6, 383,000

I can safely say, at least I know why I feel like shite.

Even the nurse said a VL like that was very high.

I see my Dr on Sat.  I think I'd rather just get it over with and go on meds...it's going to happen sooner or later..

discouraged.


Offline leatherman

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Re: Tested + last week, really need some guidance on this...
« Reply #5 on: September 06, 2012, 02:21:28 PM »
CD4 = 360
VL = 6, 383,000

I think I'd rather just get it over with and go on meds...it's going to happen sooner or later..
if you're certain that you are in the initial stages of infection, then your doctor should and might very well counsel you to wait until another test because in another few weeks your cd4s will rise and your viral load will plummet. Please note the area in that graphic from weeks 6 -12 - that's the 2 month to 3 month mark which you suspect you might be in. Depending on the next test results (remember I said it's about the trends not the one-off test), you might very well be able to go without meds for another 5ish years. While currently the science is being studied about people being immediately put onto meds, that is not yet the guidelines. Also depending on what country you live in, what the guidelines are and what your access to meds is (especially this!!), you might not be put on meds yet (or even allowed to).

You should probably wait to see what your doctor says, see if you have access to meds, and see what another test shows before moving forward with any decision - especially if you were recently infected.
leatherman (aka mIkIE)


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

Offline Jmarksto

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Re: Tested + last week, really need some guidance on this...
« Reply #6 on: September 06, 2012, 04:32:09 PM »
lincoln; 

As letherman said, sorry you had to come here, but welcome.  This is a great site for information and support.

As my diagnosis is relatively new (June) I totaly understand your feelings of discouragement, anxiety, etc. -- I have had, and to some degree still have, similar feelings.  I think your feelings are natural.  My experience over the last few months has been that the feelings of discouregment and anxiety have diminished significantly as I have read, learned, and had time to process -- it gets much better.

With regard to starting treatment -- I think leatherman has good advice, wait for your next test, take some time to learn about the process and options, and talk to your doctor. 

One thing that has helped me with the anxiety is seeing a counselor - which it sounds like you are in the process of doing.

Again, welcome,

JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #7 on: September 07, 2012, 12:12:32 AM »
Thanks guys...and yeah J, looks like we are in the same boat. I'm sorry.

Hearing that me VL is over 6 mil is sending my head spinning.

Leather, I know it's not about one off numbers, but as you said trends..but still.  It creeps me out that I have something in such quantity in my system.


Offline mecch

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Re: Tested + last week, really need some guidance on this...
« Reply #8 on: September 07, 2012, 04:52:51 AM »
Thanks again for the info.

SO..got the call with my results today.

CD4 = 360
VL = 6, 383,000

I can safely say, at least I know why I feel like shite.

Even the nurse said a VL like that was very high.

I see my Dr on Sat.  I think I'd rather just get it over with and go on meds...it's going to happen sooner or later..

discouraged.

I had viral loads like that at serocoversion.
Probably what your doctor will explain is just what has been explained here.  There is no clear "best action".  Both options are good!  Not bad.  You either wait a month, or two, to see what your body is going to do.  That's the ONLY way to know what your set point might be.  Or, if its an option in your country, start HAART right away.  But actions have advantages and disadvantages.

You are afraid your body won't knock down that high viral load.  Its pretty rare that people have rapid progression.  I was one of those rare cases.  Just means, I got identified in seroconversion and the docs whatched the viral load for a few months and said, well, genetically I lost that crap shoot and I had to start meds.  So within 4 months of infection.  In retrospect, it would have been good if I started right during seroconversion, but thats knowledge that is only attained too late - in retrospect. I felt like crap those 4 months but that's the way the cookie crumbles. Its not like i got AIDS in four months, but one does "feel" viral loads in the millions.

I just followed the doctor's advice and experience and that was fine too.  My big lesson was maybe that - that as long as you have good doctors, its just as well to do what they say. They aren't going to put you in danger, they are always trying to juggle the factors to get the best result for you, and they know more than I do about all this stuff. 

You can get tested again in 4 weeks and see where you are.  Maybe your immune response is going to kick in.  Its really a one month at a time situation for you, at the moment.  Or, start now.  The HAART will knock it all down - guarantee, each life cycle of the virus produces a huge cut in viral load, so you'll be down to thousands very quickly. Then again, the next step is undetectable and hard to predict how long that takes but it will happen that's for sure.

Sorry you had to join the HIV+ group but it is what it is.
« Last Edit: September 07, 2012, 05:02:33 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline spacebarsux

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Re: Tested + last week, really need some guidance on this...
« Reply #9 on: September 07, 2012, 06:35:53 AM »
Hi Lincoln, sorry you tested poz.

Understandably your head is spinning with a variety of feelings, fears and concerns. Just breathe, relax. This feeling will pass. You will be ok.

As for your CD4 and VL, it is typical/normal to have a sky-high viral load at seroconversion, as you are presently experiencing. Most people are not lucky enough to be diagnosed this early and therefore never really find out the peak their VL reached at this initial stage of infection.

It is also a matter of course for the VL to significantly fall and level out in the coming months (as depicted in Leatherman's graph). I think I can safely say that nothing is going to happen to you in the next few months-(unless you fall under the some extremely unlikely and rare group of ultra-rapid progressors).

Just relax, don't overthink things. Discuss your options with your doctor. Whatever you decide (whether to go on meds now or wait a while), you'll be ok in the longrun.

Hugs.

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 lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #10 on: September 07, 2012, 01:30:24 PM »
Thanks Space...

I have an appt with my Dr to talk about the results tomorrow.

BTW, for the past two days i'm noticing a lot more hair shedding in the shower.
I just ran my hands threw my hair and more comes off now than i've ever noticed.
Took a white towel and scrunched my hair and the same thing...

Is hair loss a result of sercoconversion? Is there a chance with my immune system being so low I'll start loosing a lot of hair?

Offline spacebarsux

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Re: Tested + last week, really need some guidance on this...
« Reply #11 on: September 07, 2012, 02:27:33 PM »
Is hair loss a result of sercoconversion? Is there a chance with my immune system being so low I'll start loosing a lot of hair?

Seroconversion has very unspecific symptoms.

Do try to keep as calm as is possible.  I know it's hard. But do try. You really will get through this buddy.

Millions of others did.  :)

PS- Hair loss isn't a common manifestation of seroconversion as far as I know.
« Last Edit: September 07, 2012, 02:31:10 PM by spacebarsux »
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 jimbalaya

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Re: Tested + last week, really need some guidance on this...
« Reply #12 on: September 07, 2012, 02:37:01 PM »
Thanks Space...

I have an appt with my Dr to talk about the results tomorrow.

BTW, for the past two days i'm noticing a lot more hair shedding in the shower.
I just ran my hands threw my hair and more comes off now than i've ever noticed.
Took a white towel and scrunched my hair and the same thing...

Is hair loss a result of sercoconversion? Is there a chance with my immune system being so low I'll start loosing a lot of hair?

My partner had a very rough seroconversion...fevers for 5 weeks, viral load in the millions, and yes a lot of his hair fell out, even months later it was falling out.  Our Dr. said that this does happen sometimes, and just to shave your head and it will come back.....so he did (down to a number 1), and it has been coming back.    ;)

Offline mecch

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Re: Tested + last week, really need some guidance on this...
« Reply #13 on: September 07, 2012, 02:39:10 PM »
Make a list of all the symptoms and fears that worry you.  Keep the sentences short.  Tell your doctor tomorrow you have a list and ask him if there is time to respond to some of them. My first ID would take the time to answer a number of them each time I saw him.  Of course he didn't want to indulge any OCD tendencies on my part.  And every ID has a time limit for each patient.  But your doc will probably answer quite a few. 
Put them down in writing on your computer or on a piece of paper.  Questions he doesn't answer, you ask them here.  When you put them down, that will help to keep these worries and questions from circulating non stop in your head.  You can ask them here and ask them to your doc and you'll get answers.  Knowledge usually helps lesson the anxiety.  Don't go looking all that much for really technical stuff about HIV infection, in open searches, on the Internet.  But do read the lessons on this site.   Only go looking on the Internet if you don't get clarification here or from your doctor. 
The biggest immediate battle is dealing with the shock and waiting for the new normal to kick in.  That might take some time.  Call your brain doctor and make sure he/she knows the news.  Get the appropriate sleeping pill if you can't sleep.  Consider temporary use of anti-anxiety or anti-depression pills if you find you have ruminative thoughts.  Key goal is to continue life as normal while your identity settles into it all. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Tested + last week, really need some guidance on this...
« Reply #14 on: September 08, 2012, 05:10:32 AM »
Any shock to the system can cause temporary hair-loss. Primary hiv is a shock to the system and for some people, it's a rather big shock emotionally as well as physically. Try to not worry about it too much (the stress of worrying about it certainly won't help) and it should start growing back in time.
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 lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #15 on: September 08, 2012, 01:47:27 PM »
Thanks for the good suggestions Mecch and yes Ann, you are entirely correct.

I saw my Dr. today and he said the same thing.  He noted I was under extreme stress and that unlike male pattern baldness where you wouldn't see clumps of hair coming out but would just keep loosing hair naturally and it not be replaced.  in this case I do have clumps of hair coming out, and it's a response to stress and will grow back.  I'm hoping this is the case.

He's ordered an additional round of blood tests which I went and had for an update on CD4, VL and phenotyping for resistance.

I am told I should get those results in a week.

I've been referred to the HIV centre of excellence at the hospital and hopefully will see an HIV specialist in the coming weeks. 

I am in favour of starting meds sooner rather than later. 

In the meantime, I still feel like a truck hit me. He gave me an antibiotic just in case I do have a chest infection. So we'll see where that goes. 

Thanks all for keeping up with my post and providing the support and info.


Offline buginme2

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Re: Tested + last week, really need some guidance on this...
« Reply #16 on: September 08, 2012, 02:05:19 PM »

I've been referred to the HIV centre of excellence at the hospital and hopefully will see an HIV specialist in the coming weeks. 

I am in favour of starting meds sooner rather than later. 


Are you in Vancouver, BC? The HIV centre of excellence was one of the first centers in the world to begin treating all HIV patients immediately upon diagnosis.  If you are in Vancouver, chances are you will being treatment right away, or at least be given the option. 


Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #17 on: September 08, 2012, 04:55:05 PM »
yep, that's where I am

Offline bloodtype

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Re: Tested + last week, really need some guidance on this...
« Reply #18 on: September 13, 2012, 07:07:51 PM »
hi lincoln6,

just wanted to echo what everyone else has said here. I'm about 3 months into my diagnosis and it's overwhelming to say the least. I was convinced I had all sorts of ailments (that I did not) until I got on meds. once I started, most of my fears subsided.

what helped me stay calm in those tortured moments of panic is taking a quick inventory of everything that is GOOD and everything you're doing RIGHT.
- BC has excellent healthcare and you're taking advantage of that - GOOD!
- you found this forum and are reaching out for help - RIGHT!
- you like your doctor - GOOD!

these can be small comforts when your mind is trying to convince you that your body is falling apart, even though it's not. but hold on to what you know is true, do  what you can to take care of yourself, and take it one day at a time.

and for what it's worth... I can relate to how you feel as can so many others on this forum.

Offline softballdude2012

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Re: Tested + last week, really need some guidance on this...
« Reply #19 on: September 13, 2012, 10:11:52 PM »
Hey Lincoln,

Hang in there.  You will be all right. 

I am with bloodtype.  I concentrate on all the good things in life, that is how I have managed so far.

It could be alot worse, right?

talk soon!
"the past is just that the past, the future isn't here, today is a gift, that is why it's called the present"

June/July 2013 CD4 694 VL-undectable
September 2012 CD4 752 VL 11,669
started Atripla 09/13/2012

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #20 on: September 13, 2012, 11:12:51 PM »
Thanks guys, really appreciate the support and encouragement.


Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #21 on: October 01, 2012, 07:28:13 PM »
Hello

So, latest update is that my CD4 as of last week was 506, my CD8 is 6000 and my VL shot up to 9,000,000.  ERMERGHERD!

i've been feeling like crap still, got a rash (doc gave me some cream that has helped) hair still falling out (you can really tell it's thinning out now..)super exhausted after walking around the city for any length of time, started getting some plumbing issues, cramps, bloating, gas etc.

Feeling ok with things big picture wise, better than I was when I was diagnosed a month ago..but anxiety still making my head spin a bit...so i'm going to go on celexa for a while to get over the hump. 

The good news is that I'll be starting meds tomorrow, part of that clinical GSK 744 trial.

But, I'm not sure what CD8 #'s are all about..

Any info would be appreciated.

lincoln.
« Last Edit: October 01, 2012, 07:45:49 PM by lincoln6echo »

Offline Ann

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Re: Tested + last week, really need some guidance on this...
« Reply #22 on: October 02, 2012, 06:15:29 AM »
Lincoln, have you found the Lessons yet? One of the Lessons in the The Blood Tests You'll Need section is called CD4 cell Test and here is an excerpt:

Quote


CD8 cells, also called T8 cells, play a major role in fighting infections such as HIV. A healthy adult usually has between 150 and 1,000 CD8 cells per cubic millimeter of blood. Unlike CD4 cells, people living with HIV tend to have higher-than-average CD8 cell counts. Unfortunately, nobody fully understands the reasons for this. Therefore, this test result is rarely used in making treatment decisions.


You should read the entire lesson for more information on CD4s and CD8s. Just click on the link I gave you above. If you need further clarification, don't hesitate to ask.

That's a really high VL, so it's no wonder you're still feeling crappy. But - there IS good news in your latest labs. Your CD4 went UP. That's good.

You should start to feel a lot better once you start meds. Good luck and keep us posted!

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Offline mecch

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Re: Tested + last week, really need some guidance on this...
« Reply #23 on: October 02, 2012, 12:36:40 PM »
Ok dont panic. If you start now all will be well soon enough.
I had a similar experience to yours!  Rough seroconversion, rapidly onto HAART. 

I don't think it was entirely placebo that I felt better the morning after my first dose. My body had been under siege and the next day I told everyone that I felt like I had just had a great massage......
« Last Edit: October 02, 2012, 12:41:13 PM by mecch »
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Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #24 on: October 02, 2012, 09:03:38 PM »
Thanks Ann and Mecch!

Ann, I just read the lessons part about CD4's, 8's etc.  Thanks for the link. 

I started a new thread about my experience today.  I'm curious what it was like for you guys. 
« Last Edit: October 02, 2012, 09:28:52 PM by lincoln6echo »

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #25 on: October 17, 2012, 06:41:35 PM »
So, just an update.
I've had about a month's worth of data to look at now which all reflect pre ARV treatment #'s.   

Infected early June 2012
Started seroconversion July 6
Diagnosed Aug 31

1st lab results Sept 6 - CD4 360; VL 6,383,000
2nd lab results Sept 13 - CD4 574; VL 5,000,000
3rd lab results Sept 18 - CD4 506; VL 9,325,899 - 6%
4th lab results Oct 2 - CD4 335; VL 8,425,886 - 5%

The % #'s have me kinda discouraged but I will try and keep focussed on what leather and other's have said about looking at trends over time. I am envious of those who post for the 1st time about being infected and yet have way better #'s than me!  I can't help but wonder if I didn't start HAART if I would have deteriorated fast.

I started ARV's Oct 2 so hopefully these numbers will improve when I get my next results from yesterday's blood work. 

Still feeling crappy..but less crappy I'd say. Still having some skin and stomach issues and get tired pretty fast, throat is swollen but much less than two weeks ago. I do have a bit more energy comparatively and my hair has almost stopped falling out, at least way less than before. I am getting my appetite back :)

So goes the battle...
« Last Edit: October 17, 2012, 06:51:37 PM by lincoln6echo »

Offline Miss Philicia

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Re: Tested + last week, really need some guidance on this...
« Reply #26 on: October 17, 2012, 06:56:52 PM »
Your numbers are "bad", or rather "what they are", simply because you have a documented very recent seroconversion. If you'd not been diagnosed for another 12 months I'm quite sure that your numbers would appear better (much, much lower viral load, higher cd4% and absolute).

When you see others here post what their numbers were upon diagnosis, in general you don't know if they were infected six months previous, 12 months, 24, etc.

You're attempting to read all sorts of things into your lab results without knowing the proper context for understanding them. Of course, now that you've begun HIV medication the subject is rather irrelevant.
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Offline leatherman

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Re: Tested + last week, really need some guidance on this...
« Reply #27 on: October 17, 2012, 07:50:17 PM »
1st lab results Sept 6 - CD4 360; VL 6,383,000
2nd lab results Sept 13 - CD4 574; VL 5,000,000
3rd lab results Sept 18 - CD4 506; VL 9,325,899 - 6%
4th lab results Oct 2 - CD4 335; VL 8,425,886 - 5%


The % #'s have me kinda discouraged but I will try and keep focussed on what leather and other's have said about looking at trends over time. I am envious of those who post for the 1st time about being infected and yet have way better #'s than me!
maybe i should have specified a time component in that word "trend".  ;D Usually, even when someone is incredibly sick with AIDS, tests are done at 4 to 6 wks, not mere days. Don't even bother trying to determine your trend until Jan 1st. LOL You'll be much happier if you give it all some time to work.

and Philly is very right. Why if you had NOT started meds and simply waited 6 months, your vl may have dropped to the low hundreds and your cd4 would have rebounded. Please scroll back and look at the chart I posted . You are trying to extrapolate data from the chart, and from other people's experiences, that happens over the course of months or yrs not over less than a month's time. You are trying to make comparisons of someone in the initial stages of infection with someone who has been infected for years - these are vastly different situations (as that chart shows!).

Personally, I can't even believe that your doctor is testing you so often. This is a clear waste of resources >:(, and a grab for money, to be testing your VL and CD4 once a week - especially knowing you were so recently infected. Not to mention that your doctor's actions are playing into your own emotional/mental issues >:( about you being HIV positive. He's not doing you any good at all.
leatherman (aka mIkIE)


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

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #28 on: October 17, 2012, 08:33:51 PM »
Leather, I see your point.

As for the frequency of testing, the first lab is from the STD clinic when I initially got tested. 
The second is from my GP when I went to him with the news. 

My ID doc has only submitted two labs and they will be at least once a month from here on in because i'm on a clinical trial.


Offline leatherman

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Re: Tested + last week, really need some guidance on this...
« Reply #29 on: October 17, 2012, 09:31:24 PM »
My ID doc has only submitted two labs and they will be at least once a month from here on in because i'm on a clinical trial.
wow, that's much better. :D I thought somebody was really raking in the dough from testing you every week. Once you start getting tested once a month, you'll be able to see real trends showing the difference as the meds kick in.

Good luck with the meds!  ;)
leatherman (aka mIkIE)


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

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #30 on: October 18, 2012, 12:52:14 AM »
Thanks! :)


Offline bloodtype

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Re: Tested + last week, really need some guidance on this...
« Reply #31 on: October 21, 2012, 10:02:36 PM »
hey lincoln6,
I'm very interested in what your ongoing experience is with this clinical trial. if you feel comfortable doing it, I would definitely dig a thread (maybe in the Living In section) about your experience with being in the trial. Not so much the results and the medical aspect I guess, but what it's like to deal with and how you're handling it.
It's something that was offered to me but I was too freaked out. Maybe your experience has some benefit for the group?

bt

Offline lincoln6echo

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Re: Tested + last week, really need some guidance on this...
« Reply #32 on: October 30, 2012, 06:50:05 PM »
Hey Bloodtype.

I will try and post a few things as I go along :)

For now, I'm happy and pretty shocked actually to report my latest #'s that I got today, from my labs on Oct 16.

My CD4 is 474 and 12% (up from mid 300's and 5%)
and shocking most of all...
VL went from almost 9 million to 8 thousand!!! - in TWO WEEKS.

My next visit is in three weeks so we'll see how things go from here.

Still having some plumbing issues and fatigue, but I also have the flu atm. Some pesky skin issues remaining but getting better. 
Oh and my hair has stopped falling out :)

On the mend!



« Last Edit: October 30, 2012, 07:07:06 PM by lincoln6echo »

Offline leatherman

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Re: Tested + last week, really need some guidance on this...
« Reply #33 on: October 30, 2012, 08:56:30 PM »
On the mend!
that's great to hear!! ;) that's a great change and it'll get better yet. :D
leatherman (aka mIkIE)


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

 


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