POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: Threepaw on September 16, 2011, 09:10:41 pm
-
Greetings everyone, I recently (on 8/18/11) came up pos and have since been of course bouncing all around emotionally. I had my first ID appointment on 8/25 and my doctor helped me feel tremendously better about everything, saying that while I was suffering from acute HIV, there was no reason to really worry.
On 9/13/11 we received my fist CD4 and VL count, which scared me since my CD4 was 111 (and 13%) and my VL was 893k, My doctor sent me back to be retested and today 9/16/11 the CD4 has dropped to 66 and 11%.
Needless to say I'm mortified, my doctor has put me on Atripla which I'm starting tonight but my doctor is warning me that I'm at a fairly high risk for IRIS. My Doc is confident that I should improve even in a couple weeks but I cannot help but panic that the meds won't work (Though the strain I tested pos for doesn't have any known resistance to meds). I'm just very nervous and still trying to learn about my newly acquired disease and I really appreciate this forums existence.
-
First off, breathe. Please always remember to do that.
Secondly, welcome to the forums! I am sorry you need this place, but glad you found it.
As someone who has had IRIS (put me in the hospital a few years back) I can attest that it's miserable. For the uninitiated, when someone has a low CD4 count (and has HAD such a count for a while) the sudden advent of HAART into the system, the sudden proliferation of CD4 cells can start attacking, well everything.
I had dormant/unattended PCP, which flared up and did a real number on me when my body finally started attacking it. But the inflammation alone would have been enough to warrant treatment.
I think if you can get through a few weeks, you will be fine. Oddly enough, your worry that the Atripla won't work is contrary to the notion behind IRIS. If anything, that would show it's working WAY too well, as your body suddenly finds itself with an immune system and a robust "To-Do" list.
I was amazed to discover exactly how much of the things we attribute to external pathogens are really our bodies' own way of dealing with and expelling them.
But that having been said, please don't be mortified. These drugs will work. Whether Atripla is the one you stick with or whether you find something else, the drugs really can work.
Time is your friend.
Your doctor has decided to treat you aggressively. Usually when one hears about "acute HIV infection" it is a NEW infection. In the first year of infection, it is not unusual for the CD4 count, percentage, and viral load to jump all over the place. But I agree that 111, then 66 is a bit low to hold off treatment. Though assuming it IS a new infection, chances of IRIS are mitigated by the relative recent impairment.
They always talk about normal CD4 counts being in the 800 - 1600 range (quite a range, that) yet few if any of us HAVE a cd4 count before seroconverting. So one person might have a 500 "healthy" count, another might have a 2000 healthy count. Sad thing, we'll never know what we were engineered to have. We only get the counts after the fact.
I would say please don't be nervous but seriously.
You have found a good place, full of good people. And trust me, some of the cheekiest and crudest among us are also the smartest and wisest. I think you are going to be okay.
I mean hell, you found this place, right?
JK
*edited for spelling
-
Thanks jkinatl2, its just been a few very rough weeks since finding out, it just seemed like every time I started to come to grips with what's going on I got thrown another curveball. I just took my first dose of Atripla so I suppose I'll just have to wait and see what happens. :P
-
Hang on in there Mister!
I think you have come to the right place for words of wisdom and support.
This forum has really helped me ...particulary in knowing that i am not alone.
Hope the meds help you
-
He welcome to the forums.
You said your doctor told you that you have "acute HIV".
Acute hiv is usually the term for primary HIV or the period around infection.
Your labs do not look like you just got infected.
I think there is a communication problem, either between you and the doctor or between you and us.
It sounds to me that you have had HIV awhile and thats the emergency for starting meds and thats the reason you might expect to see IRIS.
Also, dont worry about the IRIS until and if it happens.
-
Hey again all, Woke up this morning dizzier than I've ever been in my life and running a very slight fever but so far so good!
@Mecch Well both my PCP doc and my ID doc called it acute HIV infection, I started running unknown low grade fevers combined with painful headaches in late June, on 7/8/11 I ended up going to the ER for a head ache so severe that I had been up all night vomiting from pain, the ran a catscan and several blood tests but not HIV, since I had had one about 4-5 months prior. (Though I am somewhat still mad about that whole experience, the ER doctor berated me for several minutes for being gay and did imply heavily it could be HIV but he wasn't going to test for it today).
The headaches lessened and the fever came and went throughout the month so I didn't think about til on 8/8/11 I woke up with a fever close to 103, my PCP doc decided then to run an HIV based on the labs from my ER visit (my White count was 4 then) and thats when I of course found out about being pos and I think thats why they keep telling me its an Acute infection. They're best guess is I probably caught it around may, which would put it at my birthday (HAPPY BIRTHDAY! ;D)
-
Hi three:
Sorry for the reason you had to find us - but glad you found the Forums.
All of the emotions you are going through are completely normal. The most important thing is that you are working closely with your doctor, that you are taking your meds, and doing everything you can to get your health in check.
Hopefully, your cd4s, %, will rebound up and VL drop significantly down soon enough. Many times when people first start meds there is a drop in cd4 --- as was said before, it is your body gearing up and working with the meds to put the virus in check.
Feel free to ask questions, vent, share, and contribute --- it makes each day go by a little easier. You have access to a large family here who are more than willing to provide you with the support you need to get through the rough moments.
Once again, welcome ---
Phil
-
Ah Ok, so it really is acute hiv if you were negative not so long ago.
Well, unfortunately, you must be among the people who's immune system takes a mighty wallop, but its good you are on the HAART. Its a little upside to the bad situation of going from infection to HAART so quickly. Cause there are suspected benefits for those starting HAART very early in infection.
It may take a few days or a week or two to really get used to the HAART.
-
Just poking in with a quick update- its been a few days now on the Atripla, Have had an extreme amount of dizziness that just won't seem to clear up, managed to go in for work for a few hours this past Sunday, but had to duck out early. Otherwise I'm doing much better, emotionally I'm still back and forth but hopefully I'll be able to set up a consueling appointment soon.
Doctor is going to recheck my bloodwork here in a couple weeks, until then I hope this dizziness and these weird dreams stop >.<
-
I found therapy very helpful in coming to terms with my diagnosis. Good Luck. :)
-
Just a quick question, are you going to a infectious disease dr? it just seems strange that they waited until you got to 66. my dr is going to start me when i reach below 500 (im at 501 now). i am also recently diagnosed from this past march. i mean i love my normal dr but she was very up front that she is kinda not up to the latest treatments of this situation... and i thank god for her honesty. also acute HIV at 111??? something just doesn't sit right with me there and those counts.
I wish you luck too... i am actually trying to figure out which one i want to go on during my next dr visit... ATRIPLA or the COMPLERA.... i am horrible at taking pills and wish i could just go for a shot every month but thats not an option so i am looking at these forums to help me out :) anyway... good luck and keep us all posted
Also, its very hard to deal with this situation because when we all first get the news you envision people at their worst, people who dont get the treatment they need or have caught too late and are not taking care of it. i have talked to people who have had counts of 50 and below and are up past 300 and even 800. i was also at the stage where i was terrified and thought i was going to die in 5 years until i found support centers and 2 women who have had it for over 20 years and doing fantastic. you need to talk to people who are positive and with a positive attitude. Thats what helped me tremendously. i also do therapy with someone who started up many of the centers that help people here in buffalo. she was speaking to me about how her one close friend has had it for over 40 years and is fine. this is not a death sentence but having high stress will have detrimental effects on your health. you need to accept and realize once your numbers go up, you will be as awesome as you were b4 you knew your status :)
-
Just a quick question, are you going to a infectious disease dr? it just seems strange that they waited until you got to 66.
also acute HIV at 111??? something just doesn't sit right with me there and those counts.
Hi Elsie, welcome to the forums.
It's not unheard of for someone diagnosed during acute hiv infection to have a very high VL and very low CD4.
It's not really fair to say that his doctor "waited" until is numbers dropped to 66. His two blood draws were only three days apart!
-
i also do therapy with someone who started up many of the centers that help people here in buffalo. she was speaking to me about how her one close friend has had it for over 40 years and is fine.
Do you mean this friend has had HIV for over 40 years? Am I reading this right?
Because If that's what you meant, then that's most likely untrue and most definitely impossible to prove. To our knowledge the story of HIV started around 1981 and testing came later.
-
If the person had for some reason stored blood, an HIV infection could be dated to before the 1980s.
Four of the earliest known instances of HIV infection are as follows:
A plasma sample taken in 1959 from an adult male living in what is now the Democratic Republic of the Congo.
A lymph node sample taken in 1960 from an adult female, also from the Democratic Republic of the Congo.
HIV found in tissue samples from an American teenager who died in St. Louis in 1969.
HIV found in tissue samples from a Norwegian sailor who died around 1976.
http://www.avert.org/origin-aids-hiv.htm
-
Yeah mecch, I know all of that. But there is no way for anyone to say with certainty that they've been poz for over 40 years. It's highly dubious bordering on the absurd.
The examples you give rely on HIV in tissue samples etc of people who died before the first HIV test ever came out in 1984/85.
That said, if this person has indeed been poz over 40 years ( ::) :o), then I am sure he/she would be in some book of records for being the longest survivor.
-
Hi Elsie, welcome to the forums.
It's not unheard of for someone diagnosed during acute hiv infection to have a very high VL and very low CD4.
It's not really fair to say that his doctor "waited" until is numbers dropped to 66. His two blood draws were only three days apart!
To verify, since I'm sure my earlier posts are a bit jumbled and hard to follow, I was diagnosed on 8/18/11 as positive, my first ID doc visit was 8/25/11 where they got the CD4 count of 111 and 13% I did not get those results until 9/13/11, when they did a second blood pull with those results coming in on 9/16/11 as CD4 66 and 11% I'm guessing that is where the confusion is coming in, my ID doc told me we were starting meds on 9/13/11 but wanted to recheck all my bloodwork due to some less than savory chemistry/blood count results otherwise, He did not wait by any means to start my medicine (save the three days for the second blood work results to come in.)
In other news I woke up this morning with all the lymphnodes down the right side of my body being inflamed so I'm off to see said ID doc in the morning haha!
Edit: I once again want to thank everyone on these forums for the upbeat words and kindness I've already received, between the diagnosis and trying to continue my work at the vet hospital I work at it's been very difficult to stay upbeat and stress free, these forums have helped tremendously and I'm so very happy that you all are here.
-
Just a quick question, are you going to a infectious disease dr? it just seems strange that they waited until you got to 66. my dr is going to start me when i reach below 500 (im at 501 now). i am also recently diagnosed from this past march. i mean i love my normal dr but she was very up front that she is kinda not up to the latest treatments of this situation... and i thank god for her honesty. also acute HIV at 111??? something just doesn't sit right with me there and those counts.
I wish you luck too... i am actually trying to figure out which one i want to go on during my next dr visit... ATRIPLA or the COMPLERA.... i am horrible at taking pills and wish i could just go for a shot every month but thats not an option so i am looking at these forums to help me out :) anyway... good luck and keep us all posted
Also, its very hard to deal with this situation because when we all first get the news you envision people at their worst, people who dont get the treatment they need or have caught too late and are not taking care of it. i have talked to people who have had counts of 50 and below and are up past 300 and even 800. i was also at the stage where i was terrified and thought i was going to die in 5 years until i found support centers and 2 women who have had it for over 20 years and doing fantastic. you need to talk to people who are positive and with a positive attitude. Thats what helped me tremendously. i also do therapy with someone who started up many of the centers that help people here in buffalo. she was speaking to me about how her one close friend has had it for over 40 years and is fine. this is not a death sentence but having high stress will have detrimental effects on your health. you need to accept and realize once your numbers go up, you will be as awesome as you were b4 you knew your status :)
Well my ID doc has been working with HIV for over 20 years, even used to run one of the free clinics here in New Orleans, he described my acute HIV infection as "unusual since most people's CD4 levels don't dip this low" but "not entirely unheard of" he actually did not want to give me my last results because he didn't want to alarm me as he's sure I'll bounce right back given my otherwise healthy state of being ;D
-
But there is no way for anyone to say with certainty that they've been poz for over 40 years. It's highly dubious bordering on the absurd.
You may choose not to believe it, but if the person claims not to have done anything to cause an HIV infection for over 40 years, it's entirely possible.
I was infected in 1982 or earlier, as confirmed by Aaron Diamond AIDS Research Center in NYC, because it was in September of that year that I last had unprotected sex, believe it or not. That would make it at least 29 years this year. Aaron Diamond confirmed that I have one CCR-5 delta-32 mutation, which made me a slow progressor. I did not have an immunity crash until 2001.
-
That would make it at least 29 years this year. Aaron Diamond confirmed that I have one CCR-5 delta-32 mutation, which made me a slow progressor.
That's about as old as me. Good on you. :)
I agree it is 'possible'. I just think it is unlikely given everything we know and 'impossible' to 'conclusively prove'.
I think something like this, if true, is way out of the ordinary and should have been further investigated, if only to track the origins of the virus which may assist in research.
Over 40 years means infection date was in the late 1960's!
-
Space, you are arguing something that is tangential to the thread topic, and you are being a stickler about it, for what reason.
"HIV found in tissue samples from an American teenager who died in St. Louis in 1969."
Obviously there are people who were infected in the 70's and probably a few made it to be alive today. Why is this a problem for you. Whether or not to investigate it is a topic for another thread.
-
Not being a stickler about anything. Just curious to know more about a 40 + years survivor of HIV, since I didn't think they existed and had never heard of such a thing. I am more surprised and fascinated (in a good way) than trying to disprove it.
30 years (or so) survivors, I already knew existed.
-
Thanks for the clarification on your lab-work time-line.
he's sure I'll bounce right back given my otherwise healthy state of being ;D
I'm sure you will too, particularly now that you're on meds. Even if you'd opted to wait to see how your body coped, you more than likely would have bounced up to much better numbers. Keep up with the great attitude, you're going to be ok.
Hope the lymph swelling is nothing serious. It's probably not - it's most likely just your body waging war against the new invader. And that's a good thing!
Not being a stickler about anything. Just curious to know more about a 40 + years survivor of HIV, since I didn't think they existed and had never heard of such a thing. I am more surprised and fascinated (in a good way) than trying to disprove it.
30 years (or so) survivors, I already knew existed.
Space, come on, use your head. It looks to me like it's a typo - the woman is probably 40 years old and Elsie accidentally used that number instead of 10 or 20. Or maybe it's just a regular typo where she hit the wrong key. There's no need to hijack a newly diagnosed person's thread with concerns over a typo!
-
ID visit went well today, Doc feels that I may be having IRIS symptoms but for now we're just going to watch, have a Rx for Medrol if it gets worse. He reaffirmed today that its most likely acute HIV and that I'm just "to the far left of the bell curve" as far as how low my CD4 dipped, he's optimistic because they got my VL levels from 9/13/11 back (no idea why they took longer than the CD4 count) and they've dropped to 700k (from almost 900K) and since this was taken before I started Atripla, he feels that its a good sign that my body was about to bounce back anyways.
-
Good Luck Buddy, the meds will also have an effect on you. I had all kinds of effects from the meds (3 pill cocktail) I had been pozzed for a long time before I found out, so have aids. You will go thru all kinds of emotions for a few months. If you can speaking with other poz guys in your area helps too. At some point you may feel a need to change doctors too. But just think positive about the situation and you will be good.
-
well its what my dr told me about the guy having it for 40 years... he lives in lillydale here in ny and she is close friends with him. maybe she exaggerated the time frame that he had it but this is what she tells me. also, one of the PA's at my gyno's office was telling me how her best friend has had it, so she says, 35 years.. and i have talked to people who say they have had it for 30 some odd years. i am going by what people tell me. i don't google average life span of people who live with this because i dont want to depress myself. i am new to this whole fandangled thing, but i am trying to stay as happy and upbeat as i can. With everything that is also coming out with this disease i am hoping that these "urban legends" they are telling me are true. again... having high hopes here and believe that science is an amazing thing!!!
-
Just popping in again, so far everything is going fairly well, my anemia has cleared up and my white count has gone back up into the normal ranges, which is great news for me at least. Still adjusting to Atripla, most of the side effects have gone away, though I still have weird dreams and occasionally wake up drenched in sweat, I'm having my first CD4/VL test pulled on 10/14/11 and have my next appointment with my ID on 10/18/11... 2 months to the day since my diagnoses... but hopefully my CD4 will be much higher and my VL under 7,000.