POZ Community Forums
Main Forums => Living With HIV => Topic started by: Nashvegas on February 10, 2007, 01:36:17 pm
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I was infected about seven months ago, and just got my third set of labs back. I'm not on meds yet. Some really good news: my viral load started at 8,000, then dropped to 2,800; now it's at 865. More good news: my percentage, which started at 29% and then dropped to 23%, has rebounded a bit to 25%. The bad news: my CD4 count, which started at 586, and then dropped to 373, has now gone down to 228.
I'll admit it, I'm really getting scared. My viral load seems pretty damn low for not being on meds (a great thing). So why is my t-cell count continuing to plummet? Although I feel fine, my numbers are telling me that this damn virus, even in small quantities, is doing serious damage to my immune system. I'm not scared about going on meds, but my doctor has said don't rush it: let's see where things look after we have several points on the chart. Well, now, we've got several points to look at and I'm afraid to wait much longer. And I'm evem more afraid that even if my viral load continues to go down, it's not going to reverse the course of my CD4 counts.
Anyone been in a similar situation? Any advice out there?
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Hey Nash,
I can relate to your situation. My CD4's and % have continued to decline over the last 11 months while my VL was declining. I had another set of labs done yesterday because I'm basically preparing to go on meds and wanted to have one last set med free.
One of the most frustrating things to me is that the doctors and several others told me initially I could go for years without being on meds. Well, clearly that isn't the case for all of us and I wish they'd not tell us that or at least clarify not everyone is lucky.
You do have a very low viral load. So, that's good news. But personally I will not wait until I get sick to start meds. I'm thankful to those here who have shared their stories to inform others of the consequences. Not knowing how my body will react to meds my final conclusion now is that I'd rather be in as good as shape as possible while adjusting to the meds. And, I am hoping I won't have to switch around.
Completely understand your situation. I've spent hours upon hours trying to find a common thread and for all the stuff I read no one seems to have consistent numbers.
I don't feel comfortable chancing it any longer. So, I'm preparing to start meds within the month.
Ultimately, it boils down to each of our own decisions. I'm opting to be more proactive at this point.
Wishing you the best!
Wesley
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Hey... remember that your CD4 count can be a capricious thing. I've have mine fluctuate by 200 points from test to test. The doctor has always told me to look for long term trends and not worry too much about one particular test or the other. So, take a deep breath and wait for another test before you start making any decisions. AND... really.... if you are really worried about it, wait a couple more weeks and get another cd4 count. Believe me, when I first started going through this, I was getting them every month or so, just to keep me from freaking out.
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Nash,
Since you were recently infected it's possible if not likely you're in the initial/acute stage of infection, during which your numbers can go up or down a lot before finally reaching a "plateau." Your CD4 count is obviously of concern but it's quite possible it will rise again when your body and the HIV get past this phase. Most people infected with HIV have a rebound after acute infection and can fight the virus without meds for several years. You may not be so lucky since HIV is a throw of the dice but I think the odds are in your favor.
It's easy for me to say this but wait to get blood drawn again (maybe in 4 to 6 weeks instead of 12) to see how the trend goes. I hope you'll see a rise in your CD4 as your immune system gets the upper hand again.
Like Wesley said, though, when you talk to 10 different poz people you may hear 10 different experiences which don't seem to demonstrate consistency at all. HIV is unique and your infection is unique, based on factors (like genetics) which we don't fully understand. When you read about averages and other cumulated data it sounds simpler than it is in the real world.
Good luck with your next labs.
Boo
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I also agree with Boo and Puck here. Get at least one more test and don't wait several months. Even my own current doctor felt it was irresponsible of the other doctor to wait 4 1/2 months considering the trend my numbers were in. He told me if he's seeing a decline that's consistent that 2 months at most.
With your CD4 where they are I wouldn't wait more than a month.
But then again, I knew when I was infected and I read a thread from some of these people advocating going for years etc. I noticed none of them post their numbers and most were only speculating when they were infected. To me that was not very comforting.
Just stay on top of things. Keep yourself healthy and you may turn out to be one who's numbers jump up. Just don't hold your breath on that one.
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Thanks a lot, guys, for the words of comfort and the advice. I know HIV affects everyone differently, I know that the early stages can be erratic, and I know there'll be some bumps along the way. It's just so strange to feel absolutely fine (no fatigue, no swollen lymph nodes, no fever, no nothing), and still have my CDA numbers doing these wierd things.
I haven't spoken with my doctor yet, but I suspect I'll do another set of labs and go on meds soon if things don't improve. It sure helps to know you're out there.
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One of the most frustrating things to me is that the doctors and several others told me initially I could go for years without being on meds.
I hate hearing that, too. They told me the same thing... but within three months, my CD4s went from the 570s to the mid 400s... with only a teensy increase in viral load... and a rather whopping percentage drop.
Nash, it could still be your immune system is learning the virus... at least your percentages are pretty stable...
I'm with Boo on this... if you can get a blood test sooner than three months, it might be beneficial to get a new reading... you'd have a better idea as to what your immune system and virus are doing... and you'd also have some more information. The worst part is not knowing, and going in 4-6 weeks would be a win-win, I think.
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Most people infected with HIV have a rebound after acute infection and can fight the virus without meds for several years
This is what i was told initially too, but as the time went by, the docs just pile the pressure on more and more to just put me on meds :( i so much wanted my damn 5/10 years of no meds first :(
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This is what i was told initially too, but as the time went by, the docs just pile the pressure on more and more to just put me on meds :( i so much wanted my damn 5/10 years of no meds first :(
I think that, at most... I would have had three or four years before having to start meds.
I think it's kind of crap they tell people that... when so many have to start medications much sooner.
Personally, I prefer taking meds as opposed to not taking them... it makes me feel a lot more proactive fighting this thing than just sitting around and waiting to hit the 350 mark.
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Hey Buddy.
If your T cells are 228 , i suggest you take another lab and see if they went up or down. If they went up then perhaps it was just a mistake the lab did or your body is just adjusting to the virus if CD4 count continues to go down then you should talk to your doctor and ask him about your treatment options and ask for a geno test in case you have any resistance to any meds. If you are clear of anything you will have the option to take Atripla which is one pill a day or other regimens that are very few pills. All of us are scared of starting meds but it is much more scarier to be diagnosed with AIDS and know that you can be at risk for OI. If you CD4 cells do decline, you will most likely be put on Bactrim to avoid PCP or any similar med. It's not so bad my friend. Last night was my first night and have not had much trouble with meds, perhaps it's too soon to say I don't suffere from side effects but hopefully not. I went from 240 CD4 cells to 200 in a matter of 3 weeks so I was not lucky. My doctor thought the CD4 cells would go up since I am newly infected but it didn't. Good luck in this journey, good thoughts will go a long way.
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Nash,
Despite the fact that there is a lot of knowledge out there about HIV, there is still a lot that is not known. It seems that everyone's body does react somewhat differently to this virus. I was never sick. I had a high CD4, but a low percentage and a fairly high VL at just over 66,000.... I wanted my 5 to 10 years. When I saw the trend in my CD4%, I decided that I wasn't going to wait around till I was sick. I was upset that some people go for years with no problem and no real major drops in CD4. I gues I was one of the unlucky ones. I was on meds 4 months after my diagnosis. Luckily, I had some good friends here who got me ready.
As others have said, another set of labs would be appropriate and see what they show. I wouldn't wait 3 more months though. Maybe you will see things turn around. Technically, as your CD4 number goes down there are fewer CD4 cells for the virus to infect. So you would anticipate some reduction in viral load because of that. And it could be that your body might reach and equilibrium. Another set of labs is in order and then think about decisions of what is best for you. You are the only one that can make the decision. You can get advice from us here, you can get advice from your doctor, but in the end, you should be the one to make the final call. For me, I wanted the 5 to 10 years or at least 3 to 4.... I got 4 months. But by then I knew enough about the meds and about my condition that I was ready when I didn't see things turning around.
Best of luck. This is one of those really difficult things that you live with the rest of your life.
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Nash, I can understand your disappointment. I tested positive and got the news that my cd4 count was 78, so, I did not get my 5-10 years either. If there is any silver lining, the meds have been easy to take so far, and I have seen great improvement in my counts -
I can relate to your feeling of getting a raw deal, but like the rest of us, you will get past that in time.
Best of luck.
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Yeah, get tested more frequently.....so far I'm testing once a month since diagnosis...and I feel good about knowing where I am and at the same time trying not to obsess about the numbers too much....
In the meantime, take some vitamins, eat right, exercise, and get plenty of rest....you might see the numbers bounce back a bit without meds....