AIDS diagnosis on first set of bloods

[hussy_24]

Hi, well you can guess by the title that my visit to the doctor wasnt very good.

I was infected with HIV earlier this year, believed to have seroconversion illness in may, tested negative at that time, tested positive in september, bloods were taken then but lost -,-, new bloods were taken in november, the results are: CD4 of 218 and ViralLoad of 18,827. Doctor said this was unusual for someone newly infected and says it looks like i have been infected for a number of years but the test results from may are clearly hiv negative. any thoughts on this? seems like quite poor prognosis .

doctor is recommending a re-test, but then recommends the following meds:

Kivexa (abacavir with 3TC?) with either a) Efavirenz (sustiva?) or b) Nevirapine (virumune?)

I was quite shocked, to say the least, i didnt think i would have to start on meds so soon, am only a kid (24..), live at home with parents who dont even know i am hiv, let alone an aids diagnosis on my first set of bloods. The irony is that i feel much better than i have since before may, i've started working out again, dont feel so tired anymore, but i'm adamant not to let this news get to me, just would like some input, any caution with this drug combination etc?. The only thing i feel wrong with me at the moment is my stools are somewhat softer than normal although they are controllable, i fear going on meds so much....

 

[Miss Philicia]

I guess the one test could have been a false negative and you have, in fact, been infected longer than you think.   I was around your age when first infected 13 years ago, and around the same initial CD4's.  If it makes you feel better I have +700 of them now, and I've never had a serious OI or been in the hospital.

Sounds like an OK starter regimen but I'm not really an expert on all the combinations, though I've pretty much been on all of them by now.  Once you make it though the first several weeks of HIV meds you'll be OK.  Sometimes it can even be easier than you may think, though I've definitely had many really suck for a while. 

Other than that and depending on where you live I'd recommend locating a support group for newly infected individuals that are around your age.  The emotional crap is as difficult as the physical diagnosis even if you think you're dealing with it OK... just my 2 cents.  Good luck.

[newt]

Well it's not good, but it's not that unusual, unlucky perhaps but within what a doc would expect to see from time to time - about 1 in 100 people will need to start treatment within one year.

If you only tested positive in September it is possible your immune system will recover a bit more, or even considerably more, from the effects of the initial stage of infection.  But, not to play with fire, if your CD4 is still around 200 after the next test, or one after that maybe, do think about starting treatment. CD4 below 200 puts you at risk of serious opportunistic infections.

The options for first-time combo are 2 nukes + EITHER a (boosted) PI OR an NNRTI.

NNRTIs - Sustiva and Nevirapine are both NNRTIs, not much to choose between them really, some people do better on one or the other. 

PIs - Several to choose from, 1 or 2 x day.

Nukes - Kivexa/Epzicom (abacavir + 3TC) and Truvada (tenofovir + FTC) are both good meds each containing two nukes. Combivir (AZT + 3TC) also works but is not as easy to take as a rule.

You can about the side effects in the drugs section of this website, or if you prefer in the Test Positive Aware Network drug guide which is simpler.

Your doc should order a resistance test before you start treatment.

There is no best 1st time combo, each has its good and bad points.  The drugs need to fit your life, eg if you really need a clear head, Sustiva may not be a good choice, if you like a beer or two a PI may be a better choice, if you need to keep you drugs private and avoid shared fridges etc an NNRTI may be a better choice. Etc etc (doctors forget about these things).

It is important to be prepared mentally for starting combo, it is a commitment and your first time round is the most important opportunity to hack the virus to pieces.  It is better to wait until your head's straight about taking the pills than to set off sudden like and do it badly. So, personally speaking, I wouldn't be rushed into bed with combo if I wasn't happy about it, but I would be mindful that a CD4 below 200 is getting dangerously low.

i-Base treatment guides (UK)

You kinda need to talk to someone (maybe yourself even) about a strategy to deal with home life if you do start meds, the side effects in the beginning can sometimes be hard to disguise.

Despite low CD4 long term outlook is good. Your viral load is weedy and will be easy to hammer.  Your immune system is young enough to recover well with treatment. Plan for the usual things in life - love, holidays, work, boredom, debt, stepping on drawing pins, happy Sunday afternoons with friends etc 

- matt

[Ann]

Hi Hussy,

Sorry to hear about your diagnosis and disappointing first results, but I agree with Matt that it's not that unusual and in fact, your CD4 may yet go up on its own.

Regarding the possibility of a false negative, that is unlikely in the extreme. The tests are very good and if you had been infected for some time, you would have tested positive, no doubt about it.

Hang in there and try to get a couple more results under your belt so you can see if you really do need to start meds right now.

Good luck and keep us posted.

Ann

[SoSadTooBad]

Hussy - I was in the same boat - tested positive, and then got the news that my CD4s were 136, and then when the doctor did the resistance test before deciding what to put me on, they came back at 78.  My VL was 14,000.

Was hard to take, definitely.  This happened to me in May/June of this year.  Wow, those were some bad days - I thought seriously about walking in front of a bus.

Don't fear going on meds - they work, and they are not the end of your quality of life.  I can tell you that the combo I am on is really pretty easy to take - Combivir/Sustiva - I take one Combivir at 7am, another at 7pm and then the Sustiva at bedtime.  I use my cell phone alarm to remind me to take the pills, and I have a 7 day pillbox that keeps me organized.  I have some doses stashed in my office, my briefcase and my car in the event that I am somewhere other than home at 7:00pm. 

Most regimens can be very easily concealed if you need to - nothing to refrigerate, and other then the Sustiva pills having the name on them, the pills could pass for vitamins or antihistamines.   

It gets better, I can attest to that - my mind and body are in a better place after 5 months of treatment, and my CD4s were 225 back in Sept, with an undetectible VL.  More blood work later this month, hoping for continued improvement. 

Hang in there - reading these forums helped me get through some tough days and tough nights - you will be ok. 

[aztecan]

Hey Hussy,
I'm sorry you have had such a rapid chain of events. I can only echo what others have already said about meds not being the beginning of the end.

I've been on my regimen for more than a decade and am doing well. Right now, the effects of growing older are actually more of an issue than the meds or HIV.

Best guess is I was 23 when I caught the bug. I am now 49, heading for 50 with a vengeance.

Matt made a very good point when he said try to find a support group for newly infected folk. The first year or so is tough emotionally and can be as daunting as the physical.

Hang in there and, above all, remember you aren't alone. We are here to help whenever we can.

HUGS,

Mark

[AtomicA]

Hussy - That's exactly the drug combo I started on this september. Some people say that after a couple of weeks the side effects from sustiva start to go away but it took me a little over 2 months to really start to feel like I was going back to normal.
Not a tiniest bit of a problem with the kivexa.

If you do start on sustiva you might be one of the lucky minority who do not get the crazy CNS effects but if you aren't, well drink a mickey of vodka and smoke a joint and that's probably what your first night on them will feel like. Avoid eating anything with fat in it for a couple of hours before hand and it will be alot better.

If you had seroconversion illness in may it wouldn't be unreasonable for you CD4 count to still be on the low side, from what I understand your numbers can get pretty  battered in those first few weeks.

I was only infected for 2 years before my numbers were hovering around 200 and I started the drugs. I don't know if everyone will have similar success but on sustiva and kivexa I was undetectable with a 200 point raise in CD4's in just 6 weeks. I also started on a micronutrient therapy to support my immune system at the same time and I'm pretty sure that helped...

[chadnla]

Sorry to hear about meds so soon. That is what happened to me, but I tested positive in Sep and 2 months later was on meds.  It is a shock having those 2 events so close to each other and can be draining emotionally. But when you get a couple of results after being on the meds, you will realize that they work and your numbers should go up. And that will give you peace of mind.

You're doing the right thing being on this board as it will provide you with emotional support and knowledge. Everyone here is really wonderful.  It's going to be a roller coaster, but you will have many many good days.

Best

[gabbyny]

Hi Hussy,

Let me join the chorus of low CD4s right after infection and then right on into meds. I went from 200 to 76 CD4+ n a few months. Doc kept saying it was just the initial sero-conversion process and I would probably plateau at higher CD4 count...but the thing kept falling. I was afraid of Sustiva so did Kaletra and Combivir with Viread for first meds. It was tough as I got all the inital side effects of all the meds from nausea to diarhea then anemia from the AZT. It was a dificult 2 months. Then I took the chance on the Sustiva...and bang! I was lucky enough to have relatively few side effects. Now I am on Atripla (once pill once a day Sustiva and Truvada). I take more pills in the morning with vitamins and fish oils than I do with my HIV Meds. Viral load immediately plumpted down to undetectable where it has stayed for almost 2 years now. I am fully functioning at work and in my social life and am now living with a new partner for the past year. I am enjoying life/appreicating life a lot. My CD4s unfortunately are not rising much beyond the 230s but I havent even had a cold over the past year or so.

I was angry, sad and all that because I thought I would get a 10 year period of not needing meds. But treatment is good and support here and with support groups makes it more bearable than I would ever have imagined.

Being infected sucks, there are no two ways about it. But it is not a death sentence or the end of life. It is a beginning of a life that has its own peculiar twists. Hang in there and keep talking here and with others especialy over this first year. We are all here for you.

Paul

[AtomicA]

I just thought I would add one more thing about CD4 count. They tell you that a normal CD4 count is anywhere between 500-1200 right? well, that's a pretty huge freaking range when you think about it. As well, not a single one of us had a clue what our CD4 count was before we became infected with HIV, it's not something they ever test for unless they have a reason to, with HIV and I think leukemia being the only two common reasons. So, no one actually knows what was normal for you or any of us before we became infected. I think that they should probably change the range of 'normal' from 500-1200 to anything between 200 and 1200. Why do I say this? a few years ago there was some clinical study (don't know which one) going on at the HIV clinic here in Calgary that required HIV negative controls for comparison. The only requirement was that the HIV negative controls all had 'normal' immunes systems, i.e, CD4 counts of 450 or over. Since all but one of the people who work in the clinic are negative they decided it would be easiest to use them as controls, what with them being there everyday and all.
Well it turns out not a single person who worked in that clinic qualified for the study. Even though they were all negative (and I'm talking close to 30 people here) not a single one of them had a CD4 count of over 420. the average count was something like 380 or something.

My point is, normal is different for everyone. your numbers might be low now and they might stay 'low' on treatment. What really matters is that you feel healthy and that you're not getting sick. If you're healthy and functional at 250, well then clearly you only need 250 cells for everything to work the way it needs to.

I also thought I would add, that as of the past week and a half, I have hardly noticed a thing from the sustiva. I can remember things again, I'm not hung over in the morning, I can do complex math in my head again and I don't even really feel that drunk at night anymore. The adjustment sucks but I promise, it's worth it!

[hussy_24]

thanks all for the support and grats atomic on coping with sustiva
      

i used pozmatch.com and made a new hiv buddy already he recommended living well support group, worked for him --> http://www.livingwelluk.com/aboutus.htm , he also recommended i get a second opinion on starting meds so soon.

i just wish i could have had more time to get back to normal, still getting into the swing of things after so many months just sitting around. i always dreamed of having a 6 pack, biceps like boulders and a strong firm chest, i hope thats still realistic once i go on meds

[AtomicA]

Hussy, I am here to say that it is! I am 20 pounds heavier now than before I got HIV and it's all muscle. just get to the gym and stick with it! I've been going 5x a week for nearly a year and since I started on meds and stopped getting sick with colds twice a month I've actually been able to keep the weight that I put on. I'm more built now than I have ever been... I actually credit the meds with part of that!