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Main Forums => I Just Tested Poz => Topic started by: 30308 on July 24, 2010, 09:04:28 am

Title: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 24, 2010, 09:04:28 am
I tested positive on 06.25.10, labs were drawn on 06.29.10. I have had no symptoms. I had originally went into the Dr's office because I was taking Zoloft and had ran out 3-4 days prior and I was having withdrawal symptoms. He stated that the worst was over with if I wanted to come off the Zoloft. I decided to stop taking the Zoloft and requested that I have an HIV test while there.......... He called back on 06.25.10 and told me that my test came back positive and was referring me to an infectious diseases provider. I last tested negative in 2007. Here's the part I don't understant.

My labs results came back with a CD4 of 134 (AIDS) and a viral load of 61820.

The graph thats on the CDC website which is the same graph in the dr's office indicates that since I'm at 134 CD4, I've had HIV for a long time. It isn't possible. I was negative in 2007, 2006, and 2005.

Has anyone else had this same experience? It's driving me crazy trying to figure it out because it just doesn't mathmatically make any sense to me.

Thanks
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: mecch on July 24, 2010, 09:54:38 am
Sure, many people have had your experience. Believe your own labs and prior negative HIV tests. The graphs on the Dr.'s wall and on the internet may be dated, and anyway they are about populations, not individuals.  

Sorry to hear of your seroconversion.
Welcome to the forums.

Also, how are you feeling physically and emotionally?  Do you miss the Zoloft or are you handling the shock well enough with no chemicals?
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 24, 2010, 10:11:09 am
thanks for replying. Actually I feel fine. I was on Zoloft for anxiety not really for depression. I still have not had 1 symptom. I've never been a sickly person and thats why I'm so surprised that my cd4 is 134.

How can my cd4 be so low and my VL be fairly low as well? I thought it was Love CD4 the higher the VL ?

Sorry for asking so many questions, it's just very hard to understand all of this. It's all such a shock because I truely didn't think I could be positive. The first week was rough, I cried mostly in my car because I didn't want anyone else to know. I finally told my mom. She handled it as well as she could. I've only told 1 other person (best friend) and thats it.

I started the Truvada / Kaletra last night and just feel like it's a normal day. No side effects so far. :)
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: veritas on July 24, 2010, 10:56:49 am

3038,

Welcome to the forums.

There's time enough to dwell as to when you seroconverted. Right now, keep taking your medications.
You'll see your viral load will come down and your cd4s will increase. Be diligent with taking your meds.

You'll do fine!

v
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Miss Philicia on July 24, 2010, 11:18:22 am
The CDC graph is simply an average.  Just like it's known that some patients are long term non-progressors, there also exists at the other end of the spectrum rapid progressors.  I progressed to <200 cd4 within either 5 or 3 years myself (my infection date is uncertain, but within that range).  Additionally, there was a recent news blurb (I can't find the link at the moment) that showed that since 2000 there's been a statistical change in the average progression rate, and it's become shorter.

Your doctor should re-test you ASAP to rule out any lab error.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Rev. Moon on July 24, 2010, 11:29:13 am
303,

Sorry about your diagnosis, but welcome to the forums.  It is good that you took that test, even if the CD4 looks low at the moment.  It is better to know now so that you start treatment than if you had found out while dealing with some ugly illness. 

Don't worry much about when or how it happened; focus on getting that VL to an undetectable level and staying in good health.  In time you'll see your CD4 moving back up.   

You're going to be fine.

Best,

Da Rev.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: max123 on July 24, 2010, 12:17:52 pm
hi 303,

sorry to hear why you're here but welcome. its good that you're feeling well.

do you have any idea if you were recently infected? that may indicate why your numbers are what they are. if so, you may simply be rebounding. but, you did have 3 years untested so your unprotected sex history (if thats the potential source of infection) is important for you to review to try and pinpoint things.

if you had labs done already and meds prescribed, odds are your docs did resistance testing, something that you may want to consider confirming. i'm curious why you and your doc chose kaletra. was it due to resistance issues?

max
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 24, 2010, 12:44:06 pm
I really do appreciate all of your replies so far.

I went back in for new labs on 07.20.10 and do not have those back yet. He also  sent me in for an ultrasound of my liver to see if I had hepatitis. (still very weird as I have not 1 single symptom of anything)

He said that he didn't want to prescrible Atripla because I had already progressed to AIDS. The first time we met, he said that he would most definately put me on Atripla if everything came back good. Since my CD4 was so low, he said Truvada/Kaletra along with the Bactrim (to prevent PCP) would be best.

They did test for resistance and it was very good to hear that I'm not resisitant to anything.

Maybe it was a recent infection? Still the charts show that the Viral Load would be off the charts but CD4 would be wll above 500.

URGGGGGGGGGGg.. LOL. I can not wait to get the new labs back because I swear, that number had to be wrong. I've even told my mom that maybe they left off the first number and it really was above 1000..... I guess thats not possible but I'm certainly hoping it's was inaccurate.

Starting the meds last night was a bit emotional (finally confirming that I had something and needed to do something about it) but I'm just gonna keep on trucking along and hopefully one day in the near future this topic will not be in the forefront of my mind ever second of the day.

Thanks again for all of your replies, Because I've only been able to tell 2 people but not really be able to talk to those two people about it, I appreciate being able to talk on this forum. It's actually a little liberating for me. :)
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: AaronbytheC on July 24, 2010, 02:52:34 pm
30308:

You can't go by charts...  I can say without a doubt I was infected in February of this year and got my first labs in July...  My CD4 were 307 and VL of 9500...  As stated earlier there are extremes to the average on both ends.  We all react differently to this little bugger!   ;D
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 24, 2010, 03:55:14 pm
Max123, you were curious as to why my doc put me on Keletra? You've now made me curious, do you think thats a good or bad thing?
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 24, 2010, 04:06:52 pm
Also... I'm seeing a lot of people talk about the %'s. I didn't get that infomation from my dr. Whats normal? When they call me back with my new labs, I'm going to ask but just want to ask what that percentage is and should it be low or high??? Thanks again to all of you thats helping my understand my numbers. I greatly apprecaite it.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Miss Philicia on July 24, 2010, 04:12:10 pm
Also... I'm seeing a lot of people talk about the %'s. I didn't get that infomation from my dr. Whats normal? When they call me back with my new labs, I'm going to ask but just want to ask what that percentage is and should it be low or high??? Thanks again to all of you thats helping my understand my numbers. I greatly apprecaite it.

read the HIV treatment lessons (http://www.aidsmeds.com/articles/Introduction_4702.shtml) and you'll see an explanation
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: wtfimpoz on July 24, 2010, 05:03:08 pm
I tested positive on 06.25.10, labs were drawn on 06.29.10. I have had no symptoms. I had originally went into the Dr's office because I was taking Zoloft and had ran out 3-4 days prior and I was having withdrawal symptoms. He stated that the worst was over with if I wanted to come off the Zoloft. I decided to stop taking the Zoloft and requested that I have an HIV test while there.......... He called back on 06.25.10 and told me that my test came back positive and was referring me to an infectious diseases provider. I last tested negative in 2007. Here's the part I don't understant.

My labs results came back with a CD4 of 134 (AIDS) and a viral load of 61820.

The graph thats on the CDC website which is the same graph in the dr's office indicates that since I'm at 134 CD4, I've had HIV for a long time. It isn't possible. I was negative in 2007, 2006, and 2005.

Has anyone else had this same experience? It's driving me crazy trying to figure it out because it just doesn't mathmatically make any sense to me.

Thanks

Could you post a link to this CDC graph?  I'm curious to see it.

It seems to me that docs tend to be overly simplistic in their analysis, with eye towards scrutiny of the truthfulness of their patients.  My doc made a similar call about my own duration of status, despite third party confirmation of an indeterminate WB and weak-reaction on the ELISA.   When I mentioned my neg in 09/09, he actually suggested it was a "false neg".  There are a handful of reasons I can think of to explain your status:  You may have been recentlyinfected and "bouncing", you may be an early progressor, your doc may be a quack who misread his labs and tries to apply population-wide statistical analysis to individuals.  Its hard to tell the difference without more labs.  Have you considered a second opinion? 
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: wtfimpoz on July 24, 2010, 05:04:49 pm
Also... I'm seeing a lot of people talk about the %'s. I didn't get that infomation from my dr. Whats normal? When they call me back with my new labs, I'm going to ask but just want to ask what that percentage is and should it be low or high??? Thanks again to all of you thats helping my understand my numbers. I greatly apprecaite it.

I'm i'm understanding correctly, CD4 cells are a type of white blood cell that is important for fighting infection.  Your % is the percentage of cd4 cells amongst all your white blood cells.  My doc didn't mention it either.  Apparently, its normal for docs to leave it unmentioned.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 24, 2010, 06:15:54 pm
wtfimpoz..... Here is the link. I foung the first one on the CDC Website and I just went and tried to find it again and was to difficult so I did a search and this is the same graph thats on the CDC website. It's also the same one hanging in my dr's office.

http://www.healthhype.com/cd4-count-dropping-viral-load-stable-in-hiv-infection-graph.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+Healthhypecom+%28HealthHype.com%29

The graph is about 3/4 down the page.


Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: leatherman on July 24, 2010, 08:03:36 pm
My doc didn't mention it either.  Apparently, its normal for docs to leave it unmentioned.
almost 20 yrs of living with AIDS, I've never bothered to find out my % and in all that time my cd4s have barely gone over 300. (staying that low is probably due to how low my counts got before treatment, the not-so-good treatments of the 90s, and because it took 10 yrs to reach undetectable) My average over just the last decade has only been 176 and I haven't been back in a hospital in 12 yrs. (in all that time, I haven't even had a cold or flu; although I did have a couple "mystery fevers") Often, especially when your viral load is undetectable, it's not about how many tcells you have but how well they work. ;) Right now with only 318 cd4s, I'm the healthiest I've been in probably 25 yrs.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: max123 on July 24, 2010, 10:08:45 pm
Max123, you were curious as to why my doc put me on Keletra? You've now made me curious, do you think thats a good or bad thing?
i'm treatment naive, so i can't fairly answer that in terms of kaletra being good vs. bad. given your numbers, it appears that kaletra is one of the drugs your doc felt was most appropriate for first line therapy. but since you hadn't any ois and were feeling good, i was merely curious if any other combos were discussed with you as potential start-up meds.

best of luck & keep us posted.

max
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Inchlingblue on July 25, 2010, 05:26:44 pm
He said that he didn't want to prescrible Atripla because I had already progressed to AIDS. The first time we met, he said that he would most definately put me on Atripla if everything came back good. Since my CD4 was so low, he said Truvada/Kaletra along with the Bactrim (to prevent PCP) would be best.

This doesn't really make sense. Kaletra is not necessarily better for someone with an AIDS diagnosis. Is this doctor an HIV specialist? Kaletra is fine, it's a strong PI (protease inhibitor) with a Norvir boost but it usually causes gastrointestinal side effects and there are other better options to choose from if you have no resistance issues.  Kaletra is not considered one of the "preferred" options when starting meds.


As far as your CD4s, everyone, whether they have HIV or not has a baseline CD4 level which can vary greatly. There's no way to know what one's baseline levels are since nobody gets a CD4 count while being HIV negative. It's possible that you had a lower baseline to start with. Or it's possible, as someone else mentioned, that this is a recent infection, which can cause CD4s to dip before they then stabilize. 

In case you need to switch Kaletra, Dr. Gallant gives his opinion on the pros and cons of each of the preferred combos for starting therapy here, LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/lost_on_choosing_medication.html?contentInstanceId=513447&siteId=7151
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Assurbanipal on July 25, 2010, 06:28:52 pm
Welcome to the forums 30308

This doesn't really make sense. Kaletra is not necessarily better for someone with an AIDS diagnosis. Is this doctor an HIV specialist? Kaletra is fine, it's a strong PI (protease inhibitor) with a Norvir boost but it usually causes gastrointestinal side effects and there are other better options to choose from if you have no resistance issues.  Kaletra is not considered one of the "preferred" options when starting meds.


Actually, there's some history here.  When I started, in 2006, my doctor thought that Kaletra was stronger than Atripla if you had a low CD4 count, and this was apparently a common view back then.

But in 2008 there was a head on comparison study done in Mexico of Kaletra vs. Sustiva for people with low CD4 counts.  That study found that Sustiva performed better in getting the viral load down.  While Kaletra did seem to be a little better at increasing cd4 count, the study still swung the needle toward Sustiva (and so Atripla).  Of course, it was a pretty small study.  Still it turned the accepted theory around a bit as acknowledged in this write-up from Project Inform.

http://www.projectinform.org/info/pip/46/03.shtml


30308, it sounds like your doctor is focused on the low tcell count and which drug might raise it faster.  Just know that if you have unacceptable side effects that continue (e.g. diarrhea) there are other drugs you can try -- if he wants you to stick with something like Kaletra, Prezista is currently the recommended starter drug that is most similar to Kaletra. 

A
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Inchlingblue on July 25, 2010, 06:34:58 pm

Actually, there's some history here.  When I started, in 2006, my doctor thought that Kaletra was stronger than Atripla if you had a low CD4 count, and this was apparently a common view back then.
 

HIV/AIDS research moves at a fairly brisk pace. I'm not sure if this doctor is up to speed.

There have been studies that have found Isentress to have greater CD4 increases (over Sustiva) if this is his doctor's main concern. The point is that all of the preferred treatment options do the job and to choose a drug that's not even one of the preferred options for reasons that are outdated is not exactly comforting, especially since excessive diarrhea is a fairly common Kaletra side effect.

There's no doubt that Kaletra works and is a potent drug but it's not necessarily the best choice if there are other options.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: mecch on July 26, 2010, 04:30:11 am
Are you taking Kaletra with or without Norvir boost?
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Miss Philicia on July 26, 2010, 09:45:49 am
Are you taking Kaletra with or without Norvir boost?

Lopinavir was developed by Abbott, the company that previously had developed ritonavir.  They're combined in one pill and marketed as Kaletra.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 26, 2010, 10:16:27 pm
I'm not sure what a Norvir boost is so I guess I'm not unless it's combined with what I'm taking. I'm taking 1 Truvada and 4 Kaletra per day...... and also 1 Bactrim per day.

Honestly, I am very surprised that I've not had any side effects what so ever. It actually feels no different than before I started them. Granted I just took my 4th night of the meds so I guess I'm not out of the water yet (regarding side effects) and I'm hoping it continues this way.

I am going to ask the Dr why he chose the meds I'm taking vs. Atripla. Now.... I had to go in for an ultrasound of my liver because my enzymes were up so maybe thats why no Sustiva. I'll ask though and keep you updated.

Again, I appreciate you all helping me understand this whole game of getting numbers back in line to stay healthy.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Ann on July 26, 2010, 10:48:29 pm
You have a norvir boost - it's contained in your Kaletra pill as Philly explained to you. Did you not bother to read his post?

Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Inchlingblue on July 26, 2010, 11:03:47 pm
You have a norvir boost - it's contained in your Kaletra pill as Philly explained to you. Did you not bother to read his post?


Since HIV meds each have several different names he probably did not realize that "ritonavir" is another name for Norvir. It can get confusing especially in the beginning.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: mecch on July 26, 2010, 11:04:31 pm
please excuse my stupid question about the norvir boost, i didnt know it was in kaletra!
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Miss Philicia on July 26, 2010, 11:20:10 pm
Now now children, don't be fighting over me.  I have enough lovin' for all of you.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: Hellraiser on July 27, 2010, 12:53:06 am
I'm really surprised by Kaletra as a first line option.  There are numerous people on these boards that used Atripla from a very low CD4 nadir (lower than mine) who have rebounded very quickly in addition to dropping their VL to UD in a short amount of time.  As long as you're able to remain adherent to the Truvada/Kaletra combo and it's working then it shouldn't be an issue, but have you even had a resistance profile done on your bug?
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on July 27, 2010, 09:59:35 pm
I got the results back from the labs I took on 07.20.10 (before I started my meds). I was really hoping that the CD4 count from the original test was inaccurate but I guess not.... Fairly good news though. My CD4 went from 134 to 179 and my viral load went from 61820 to 38720.

The MA said that the Dr. would discuss the results from my ultrasound (liver) on my next appointment which is in 2 months. I'm certainly hoping thats great news since he doesn't feel the need to go over them right away.

You are all teaching me new stuff each and every day. I appreciate that.

Just thought I'd let you all know that I just took my 5th night of meds and I still do not have any of the horrible side effects that others report. I am considering myself very lucky at this point. I'm keeping my fingers and toes crossed though.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: justaguy on July 27, 2010, 11:31:30 pm
I'm about a year ahead of you.  Like you, I was stunned by my low CD4 (136) relative to my most recent negative test, which had been about two years prior.  I felt like I could even pinpoint my infection date, due to a nasty seroconversion illness, which made the low CD4 even more curious to me.  But you'll get over the second guessing once you realize it really doesn't matter, I promise.  The main thing is to get better numbers.

My doctor started me on Atripla and Bactrim, despite the AIDS diagnosis.  Things progressed in the right direction QUICKLY, and now I'm "normal".  I hope the same happens for you.  Good luck!
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: 30308 on August 03, 2010, 10:19:29 pm
Thanks for that information justaguy. Your starting numbers are like mine currently. It's nice to know that you've progressed to a good CD4 and undetectable viral load in less than a year. Are you taking some secret potion or just following your regimen religiously?

ALL: I found out that the ultrasound of my liver came back perfect today. Everything was fine. I also found out my CD4 percentages and posted them in my signature. It was 10.3 on the first set of labs and 10.5 on the second. I'm hoping it rises on my next set due to starting meds.

Thanks again for all that has helped me understand my lab numbers. I could probably teach a class now. :) Just kidding but seriously Thank You for helping me, I greatly appreciate it.
Title: Re: Just Tested Positive and I Can't Understand My Numbers
Post by: phildinftlaudy on August 03, 2010, 10:25:30 pm
Thanks for the update 30308 -
You should definitely see an increase in the %.