POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: jacken on June 06, 2011, 02:10:27 pm
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Hi everyone, I am glad to have found this place. It has been very helpful to read others' experiences.
It has been a month since I was tested positive by WB test. I was numb when I first got the result. Since I did test every six months, I guess I was mentally prepared somehow that one day the test could come back positive and here I am.
After the diagnosis, I immediately went online and sought some guidance. I notified those who I had sexual contacts in the past three months and changed my PCP to one who also specializes in HIV treatments. I have learned so much in the past few weeks and have been optimistic about moving forward.
My first lab result shows CD4 493 and VL 297. I am a bit puzzled by the numbers given my infection is fairly recent. I had an unusual body rash in mid-April which lasted about 7-10 days. Now I understand it could be the symptom of seroconversion. I didn't have any flu-like symptoms or flu in the past year. If this is case, my infection could have happened in 4-6 weeks prior to mid-April.
What further puzzled me was that two regular buddies I had unprotected sex for quite some time tested negative. I had sex with each in March and early April. Would it be possible to have either of them pass the virus to me while tested negative or me passing the virus to them before seroconversion? I hope I didn't infect anyone.
I will have an appointment in two weeks and am now studying the meds. I think I will opt for treatments.
Thanks for your support. It is going to be a long journey but I know I am in a good company.
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Welcome to the forums Jacken
Sounds like you are doing well.
Most of us try to figure out when we were infected -- it's natural human curiousity -- but since a lot of people don't have any seroconversion illness it can be hard to know whether some prior illness was infection or just ... some prior illness.
Was this your first test or had you tested negative previously? You can safely assume you were not infected 3 months before your last negative test.
That's a very low viral load -- you might want to get another test or two before deciding to start meds. A few people (under 3%) can control HIV for an extended period without meds and it might be worthwhile to see if you are one of them.
Be well
Assurbanipal
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Hi jacken, sorry about your diagnosis but glad to hear you're coping well.
The guys you had unprotected sex with need to test 3 months after last sexual contact for a conclusive test result. However, it is entirely possible they were not infected.
I had unproected sex with my bf for over an entire year (cos i didn't know i was poz) and he thankfully and very luckily remained negative.
Also, it may be too soon for you to start meds. I think you should discuss it with your doc in greater detail.
Welcome to the forums
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Welcome to the forums! :)
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Thanks for the welcome!!
Was this your first test or had you tested negative previously? You can safely assume you were not infected 3 months before your last negative test.
I have been tested previously. The most recent one was one my routine physical every six months. That would be nine months ago when everyone can be sure that I was neg based on my last test.
That's a very low viral load -- you might want to get another test or two before deciding to start meds. A few people (under 3%) can control HIV for an extended period without meds and it might be worthwhile to see if you are one of them.
Yes I am waiting for another test and see how my body is coping, then will decide. What would be the downside of taking meds other than potential side effects, financial and compliance?
The guys you had unprotected sex with need to test 3 months after last sexual contact for a conclusive test result. However, it is entirely possible they were not infected.
I had unproected sex with my bf for over an entire year (cos i didn't know i was poz) and he thankfully and very luckily remained negative.
Thanks, spacebarsux. Yes I hope they stay negative.
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What would be the downside of taking meds other than potential side effects, financial and compliance?
I think you pretty much nailed all of the downsides :)
It is a good idea to get your numbers, get an idea of where you stand in terms of viral load and cd4 count percentage and any resistance issues.
Deciding on whether to go on meds or not is definitely an individual decision that is based on consultation with your doctor and discussing things such as side effects and being willing to be compliant with the regimen, as well as knowing financially if you will have access to them on a consistent basis.
Best to you and welcome to the forums.
-Phil
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Welcome to the site jacken.
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Hi Jacken, welcome to the forums.
Have you had your positive antibody result confirmed with a Western Blot? Because if you didn't, you may not be positive. That VL result is what a false positive result can look like. False positive VL results are why they are not really recommended or approved for diagnostic purposes.
Even your CD4 result is not proof that you have not had a false positive antibody result. It is on the lower end of a normal result as some people naturally have CD4s on the low side. You could be one of them.
Of course if you have been confirmed with a positive Western Blot result, then this is all moot anyway. However, I had to ask because you'd be surprised how many times people are told they're positive when the result hasn't been properly confirmed. It shouldn't happen, but it does.
You can read more about the hiv diagnostic tests by reading the Testing Lesson (http://www.aidsmeds.com/articles/HIVtests_5029.shtml).
If you have not had your positive antibody result confirmed with a Western Blot, then you need to have that done.
If you have been confirmed, well, sorry about that. Hang in there, you're going to be ok.
Ann
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Hi Phil, thanks for your advice. I did get genotype test but it could not be performed due to low VL. I would be open to any recommendation by the doctor.
Hi Ann, I was first tested by EIA and then confirmed by Western Blot. Thanks for the welcome.
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Yes I am waiting for another test and see how my body is coping, then will decide. What would be the downside of taking meds other than potential side effects, financial and compliance?
You've pretty much nailed the downsides.
But for a very few people there is also the question of what are the upsides? The only point of taking the drugs is to bring the virus under control and if you happen to be one of those rare few who can do that without the drugs, well then taking them would not appear to have much upside....
And that is a very unusually low viral load. So, it might be worthwhile to see if it stays there or even continues to decline.
A
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Thanks, Assurbanipal. Perhaps you and others could help answer my questions. Thanks again.
Wouldn't it be beneficial to take the meds to fight the virus, instead of counting on t-cells fighting it?
Is it possible to have undetectable VL without taking meds?
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Yes, it is possible for a very few people to be undetectable without meds; they are referred to as elite controllers -- those with a very low viral load (under 2000) are known as controllers. There is a lot of information at this site: http://www.hivcontrollers.org/hivcontrollers.
What the drugs do is stop the virus from reproducing -- should you wind up one of the rare few who can do that without drugs, there is only potential downside from taking them. Most modern drug combinations have been studied for years and are fairly safe, but there is still the possibility of negative effects plus the expense.
Many controllers are also participants in studies to see why and how they control the disease naturally; many of them feel a great deal of satisfaction in participating in research towards a cure -- the ability to participate in the studies is another potential benefit of staying off drugs, should you be interested.
Of course its all preliminary at this point. You won't know for a while -- it takes a year of controlling the virus without meds to be eligible for the controller study. Still perhaps you may find that website interesting.
Be well
A
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Have you had your positive antibody result confirmed with a Western Blot?
OP said:
It has been a month since I was tested positive by WB test.
WB means Western Blot I am assuming.
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Jack, sorry to hear you have been confirmed by WB, and thank you for the clarification.
I agree with those who have said you can afford to wait and see how your numbers pan out over the next few months. That very low VL so early on in your infection could very well mean that you are going to be a Long Term Non-Progressor (LTNP) or even an elite controller. If you are, then there is no good reason for you to take meds.
In addition to the site Assurbanipal linked you to, another good one is http://www.zephyrfoundation.org/ The site was created and is maintained by someone who is a forum member here - Zephyr (http://forums.poz.com/index.php?action=profile;u=41). She even has forums on her site for people who are LTNPs or who have questions regarding LTNPs. If I remember correctly, she is an elite controller and is not on meds.
You really can afford to give this some time to see what kind of trends you get from your numbers. I've been poz for fourteen years and I'm still not on meds and I'm doing well. I'm not an LTNP though, I'm a LTSlow-Progressor (LTSP) and I will be on meds at some point, probably in the next year or so.
Hang in there!
Ann
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Thank you for your replies and advice. These information is very helpful. If I am deemed to be one of those so called "elite controller," I definitely would love to participate in those studies.
I will have another lab test in two weeks and will keep you posted.
(http://i295.photobucket.com/albums/mm137/ninja9578/GroupHug.png)
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(http://i295.photobucket.com/albums/mm137/ninja9578/GroupHug.png)
Cute! :)
Fingers crossed your next labs bring good news - a small or UD VL and an increase in your CD4s.
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Thanks, Ann.
Having a cold right now. Will that affect CD4 and VL count?
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Having a cold or feeling under the weather can affect your CD4 count. For a more detailed explanation please follow this link to a similar question.
http://i-base.info/qa/1515
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Thanks, Ann.
Having a cold right now. Will that affect CD4 and VL count?
Good question. Last October I was brewing a kidney infection when I had my labs drawn. The very next day I came down with a high fever (104F) and was pretty ill. Even so, my labs came back higher (CD4) and lower (VL) than they had been. In fact, if they had stayed at the level they were previously, I would have started meds. It's all a crap-shoot if you ask me. This is why trends over time are so important and one result means diddly-squat on its own.
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Thanks for the info.
I guess there is no need to reschedule my appointment?
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Jack, if you've got a cold now and your blood draw isn't for another week or so, then no, don't bother changing your appointment. Your cold will probably be long gone by then.
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Ann, thanks for being always helpful.
It should be gone pretty soon. I am feeling perfectly fine - eat well and sleep well. I do get anxious when it gets close to the labs appointment.
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Please do let us know how it goes, Jacken.
We are rootin' for you! :)
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Got my another lab result - CD4 611, VL 235. My doc said there is no compelling reason to start meds now.
I am happy.
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Good news!
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I'm just catching up here but I also welcome you to the forums, jacken. I had similar lab results when I was diagnosed 11 years ago. My viral load has been as high as 3,000 and as low as undetectable, most recently 1600-something and CD4s over 800 (as low as 476 if I remember correctly.) I'm not convinced that I'm an elite contoller as my doctor says but I'm surely a viremic controller and I attribute it to my Basque lineage. My mother tells a story of an entire village in the Middle Ages succombing to the plague save for our family, and though she's not old enough to remember it I think her mother was ;D
I've joined the "Boston Blood Club" and it's quite an honor for me to be able to donate blood. This is a good link to look into should your next labs be similar: http://www.hivcontrollers.org/ (http://www.hivcontrollers.org/) and feel free to PM me if you want more info.
Cheers,
Creighton
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Thanks, Assurbanipal.
Basquo, thanks for the info. If I do qualify, I will participate in the study. Have next appointment in September.
I assume that you are not on meds?
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Got my another lab result - CD4 611, VL 235. My doc said there is no compelling reason to start meds now.
I am happy.
I'm just catching up here...
I also somehow missed your latest lab results news. Those numbers are fantastic and are both going in the right direction. I always find it really exciting when someone looks to be heading for LTNP status. Congrats! I hope your good trend continues. When do you go for labs next?
I'm surely a viremic controller and I attribute it to my Basque lineage. My mother tells a story of an entire village in the Middle Ages succombing to the plague save for our family, and though she's not old enough to remember it I think her mother was ;D
That's really interesting, Creighton. (and funny too, although your granny would probably put you over her knee if she heard you say that :D ) Has someone in your family researched this about your family history? If someone has and you have more details, I'd love to hear about it and I'm betting others here would too. Maybe start a thread about it?
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I also somehow missed your latest lab results news. Those numbers are fantastic and are both going in the right direction. I always find it really exciting when someone looks to be heading for LTNP status. Congrats! I hope your good trend continues. When do you go for labs next?
Ann, thank you very much. Fingers crossed. I couldn't be happier. My next labs will be in September.
I have to admit that I am really anxious about the results. I remember that I didn't sleep well the night before going for my lab results. I didn't even lose much sleep after my diagnosis. Go figured.
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Hi,
Sorry if this is really a old thread and I am bringing it up now. well, OP still needs to share with us his Sept result :)
Ann- I had no idea ( or forgot) you are not meds for 14 years as of now! congrates.
Basquo, I read your link about the elite controller. Somewhere in there, it was mentioned about the viremic controller like you who are able to control the virus to a minimum level ( ud to 2/3k for a longer period of time). I was wondering is there any timeline to be considered 'Viremic Controller'. Can you share what was your Viral load when you were into 7 years of being infected with HIV?
Question: Would anyone be considered a LTSP or Viremic controller if she/he can keep the virus to a low level for 6/7 years to minimum like 2k/3k and have 600 Cd4 count?
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Okay, I have another question.. if anyone can answer that, would greatly appreciate that..
So, if someone is a veremic controller or LTSP ( who is able to control virus to a minimum 2k/3k for 7 years and have a decent CD4 above 500), if the imaginary person :) has unprotected sex with another poz man with a different strain, will the LTSP person lose the ability to control the virus after he/she get infected with different strain? What is recommended?
--Thanks
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Someone who has been infected for the duration of the time frame you're suggesting would be highly unlikely to become re-infected. The very few cases to date of re-infection have involved people who had only been poz for a very short time.
I wish this boogy-monster of re-infection (aka superinfection) would go away already.
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Thanks for the answer. I had no idea all possible reinfection or reported superinfection happened only in newly diagnosed/ fairly new HIV+ people.
LOL @ boogie monster... :)
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Since, just so you know, when reinfection is referred to as superinfection, it doesn't mean super as in super-duper, it means super as in superimposed. One infection on top of the other.
Many people erroneously believe that superinfection means that it's some kind of king of hiv infection. (http://i933.photobucket.com/albums/ad174/dash1293_2010/Emoticons/king2.gif) It ain't.
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Got my new set of results.
VL: 158
CD4: 667
It didn't change much from the last result but I am happy to see that it remains stable.
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Wow, very impressive. Your body is controlling this very very well.
-Will
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Got my new set of results.
VL: 158
CD4: 667
It didn't change much from the last result but I am happy to see that it remains stable.
Not too shabby!
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Great result !!!!! These are good news !!!!!! Your numbers are fantastic... Enjoy !!!
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Happy New Year, everyone.
2012 starts with great news. My latest lab shows that
CD4: 667
VL: Undetectable