my bf is a very fast progressor

[madbrain]

My bf tested poz in mid-November 2006, 2 weeks after I did. He was neg as of April 2006 (I have a copy of the written test).
His first labs in late november were : CD4 400, VL 3500 .
His newest lab as of late january are : CD4 250, VL 20,000 .

He was supposed to get his results last friday and I was going to come along, but his doc called him early on wednesday to get the results, so I didn't get a chance to come. The doc ordered a genotype test because he wants my bf on meds ASAP.  My bf told me his doc really doesn't know why he is progressing so fast, but doesn't want to take the chance and thus wants him to start meds ASAP.

Other than his bad labs, my bf feels quite healthy. The only thing that's unusual is white stuff in his mouth, that might be oral candidasis according to the books I read, but I don't think he had mentioned it to his doc. My bf eats well, doesn't do drugs, not even alcohol, swims one hour every day, is only 28, and still goes to work ... Yet with the low tcell count and if the oral candidasis is confirmed, he is close to meeting the clinical definition for AIDS already (tcell at 200 with one AIDS-definition infection) :-( ...

I'm really bummed about this. I thought the average time from HIV infection to AIDS without medication was about 10 years. We know his infection happened last year. It's only been 9 months since his last HIV-negative test, and he is very close to AIDS now. How common is this ? What could the explanation be ? The only thing I can think of is something hereditary - his body isn't able to fight the virus.

I believe I was the one who infected him and my timing was similar - negative antibody test in june, and positive in late october. But my labs are much better - I just got my 3rd labs, and got my highest CD4 yet at 788, CD4 40% and VL stable at 2437.
I'm 30, I don't exercise at all, I'm depressed and unable to go to work for 3 weeks. The only thing I changed since the last labs was start on a multi-vitamin and drink a little bit less frequently. If results were related to our respective efforts it seems our labs should be reversed.

[Rightbrain]

Hello Madbrain, 

If your BF goes on meds he should do quite well.  It also may be too soon to tell if his T cells will come back up on their own.  I went to 100 T cells within one year of infection, started meds, and am now in the normal range.  I think (feel in my gut) that since the damage to my imune system was so fast and relatively short that it wasn't the same as if the damage had been long and slow.  I take Atripla and T cells are around 500, VL undetectable.  I should do as well as anyone who has never gotten the AIDS diagnosis.  This is all new for you both, so I hope that you're doing alright emotionally. 

Sincerely,

brother joe

[Ann]

Hi Mad, and welcome to the forums.

It is entirely possible that your boyfriend's body is still adjusting to the virus. You really can't tell much from just two sets of results. You also don't list his CD4 percent - it would be helpful to know. When is the soonest he can have his labs done again? He has a chance of having them be much better.

If your boyfriend isn't complaining about pain in his mouth, chances are good that the white stuff isn't oral thrush. It's usually painful. Make sure he gets it checked out.

Ann

[bubble]

I'm so sorry to hear about you and your bfs diagnosis. I know how scary and awful it is.

I was also a somewhat fast progressor too. I had to go on meds after only a year and a half of being infected. I also rarely drink, never do drugs and have a pretty healthy lifestyle. I'm only 34 so I was wrecked that i had to start meds so soon. I've been in group therapy a couple of times and there are lots of guys in their 20s/30s who've had to start meds early so he's not alone. Everyone's body reacts differently to the virus. I know when i got infected but i didn't get an HIV test for about 5 months.

I would recommend that he start meds asap as well. the more reseach I've been doing seems like the docs are saying to "start early" again. you might consider it too. My tcells were up in the 500s but they were on their way up. If i got blood drawn months earlier they could have been in the 200 range as well. who knows. also like Ann said, his body might be adjusting to the virus and his tcells might go up. But I say, why chance it and risk and AIDS diagnoses that would just depress you guys and possibly risk him getting sick.

[AustinWesley]

Hey Mad,

I don't have any terrific advice for ya.  All I can say is I've been dealing with this for about a year and nothing I've done has helped out my counts.   Now I don't feel as guilty for not having been more active.

I don't feel as bad now after reading your post.  We all tend to get tied up in the numbers game and I guess the great thing here is that he isn't sick. 

Some people naturally have lower CD4 counts.   I believe the normal range is 400-1600 w/out HIV.   It does seem odd that his would be that low so early on from info you have provided, but like Ann said could be his system is adjusting.   

I wish ya guys all the best.

Wesley

[madbrain]

Hi Bubble,

I would recommend that he start meds asap as well. the more reseach I've been doing seems like the docs are saying to "start early" again. you might consider it too. My tcells were up in the 500s but they were on their way up. If i got blood drawn months earlier they could have been in the 200 range as well. who knows. also like Ann said, his body might be adjusting to the virus and his tcells might go up. But I say, why chance it and risk and AIDS diagnoses that would just depress you guys and possibly risk him getting sick.

My doc is advising against me starting the meds at this stage - he says most of them have liver toxicity and it is best to wait as long as possible before taking them, especially considering my age. Also, I take several other meds that have counter-indications with most HIV meds. As long as I'm in the 700 tcell range I tend to agree with him. On the other hand, I have a lot of stomach aches and discomfort in general daily, but I think that might have more to do with my depression and stress than the HIV. Did you have any physical issues at all before you started the meds ? And if yes, did they improve ?

[madbrain]

Ann,

Hi Mad, and welcome to the forums.

It is entirely possible that your boyfriend's body is still adjusting to the virus. You really can't tell much from just two sets of results. You also don't list his CD4 percent - it would be helpful to know. When is the soonest he can have his labs done again? He has a chance of having them be much better.

If your boyfriend isn't complaining about pain in his mouth, chances are good that the white stuff isn't oral thrush. It's usually painful. Make sure he gets it checked out.

Ann

I don't know his CD4%. His doc isn't giving him printouts and just told him his CD4 and VL verbally. Note sure when his next labs will be, but presumably there will be one next week when he gets his genotype before he starts his meds.

Unfortunately, he was complaining about pain in his mouth. I had him take lysterine every day these past 3 days and the pain and bleeding of the tongue seem to have gotten better, but there is still white stuff.

[Ann]

Unfortunately, he was complaining about pain in his mouth. I had him take lysterine every day these past 3 days and the pain and bleeding of the tongue seem to have gotten better, but there is still white stuff.

Hi Mad,

Make sure he gets that taken care of sooner rather than later, even if he has to schedule a special appointment. If it is thrush, Listerine won't help at all and it could end up spreading to his esophagus - and he does NOT want that to happen.

Hang in there...

Ann

[ARMANDO]

IT DOES SOUND LIKE YOUR BF HAS A CASE OF THRUSH!!!HE NEEDS TO SEE A DOC FOR THIS AND IT USUALLY SUBSIDES WITHIN A FEW DAYS .I'VE HAD THIS BEFORE AND I WAS FREAKED OUT AT FIRST BUT MY DOC DIAGNOISED IMMEDIATELY AND PRESCRIBED NECESSARY MEDS.WHEN YOU HAVE ANY INFECTION,ANY KIND OF INFECTION ,IT WILL EFFECT YOUR VL AND CELL COUNTS!!

[bubble]

As long as I'm in the 700 tcell range I tend to agree with him. On the other hand, I have a lot of stomach aches and discomfort in general daily, but I think that might have more to do with my depression and stress than the HIV. Did you have any physical issues at all before you started the meds ? And if yes, did they improve ?

well... there is debate about when to start and i am not an expert.
1) i know about the side effects and i of course understand. i felt the same way so you are fine with your numbers.
2) dr. jon kaiser (http://www.integrativehealthconsulting.com/) says that if you take meds in the first 6 months after infection that you can set the viral load to a very low level - then get off meds in a couple of years and possibly be med free for many years or indefinitely. So if your were infected less than 6 months ago i think this is something you should consider.
3) i also read that if your numbers go down too low - like under 200 or 100 that the virus starts attacking your tcells in a different way and that it is often hard for your tcells to get back to a normal level even after HIV meds. Of course this is not always the case but this is something to think about.
4) i just wouldn't wait too long before starting meds. Seems like you are fine though at your numbers.
5) i never really had any symptoms - maybe sweating more when my VL got up to 75,000. but i was also extremely anxious and flipping out knowing that my tcells were dropping and my VL was shooting up... because my doc said i would be "fine for 5-10 years without meds" because my VL was at like 20,000 and my tcells were like 900. then suddenly like a year into it, every test i would get the tcells would drop like 100-150 points and my VL would jump up!
6) now, on meds i have no side effects - i pee at night sometimes more than once - thats it. my VL is undetectable and my tcells are going back up to a normal range.


it gets better. i'm thinking of you guys.

[NYCguy]

Hey Mad,
My BF and i both were infected this past year and are both now on meds.  Everyone is different - My Bf was infected sometime in the summer, tested poz end Sept (after ongoing fever and ear infections) then had labs first tcel around 250 11% followed by 189 12% in Nov.  So technically, he had AIDS - however, from all the reading I've done the Tcells often drop to the 200 range early in infection then stabilize somewhere highter.  Would his have come back up witout meds?  Maybe, but not worth it to find out.  He never got sick and has been on batrim (every other day now) and his last labs were Tcell over 700! at 16% + undetectable.  This early, I wouldn't really consider it AIDS and it doesn't really matter because as long as you respond to the meds you or he or anyone else should be fine for years.  200 is no magic number and thrush is very common in HIV and treatable.  The only 'good' thing about the AIDS diag is that he was able to get rent assistance - so if your finances are tight maybe you can do that too?

My tcells were initially 530 at 30% vl 16K, then 1 month later 530 at 20% VL >250K!  I was freaked and started the meds about 6 weeks ago (truvada/norvir/reyataz) after 4 weeks am back to tcell 550 30% and vl <400 (almost undetecable).  I was infected at the end of summer.

Neither of us have had any major side effects from the pills, just a little diarrhea if we don't eat enough with the pills.  We both drink and do the occasional party drug on a night out.  So you don't have to change your whole lifestyle and i also feel it's better to start sonner rather than later since there will invariably be many more options, perhaps even something akin to a cure, in the near future and keeping the immune system as healthy as possible will mean more options.

Don't worry - just do what the doc says.  I really don't think he's that much different from many people, including my bf and me.  Also realize that now that people get tested more often they know they're labs early on, whereas before many people didn't know until they had been poz for sometime and perhaps dropped to below 200 but then stabilized later.

Just some thoughts and sharing. Hope this helps - I don't think you're boyfriend is any kind of exception. 

Be well.

[madbrain]

Good news - bf's thrush symptoms seem to have disappeared completely, so that probably wasn't what he had after all.

I finally got to meet with my bf's doc this morning. Turns out he is using a free county clinic . He has insurance from work, but he thinks the copays are too high, and he qualifies for county health due to income. The doctor had numbers hand written on a piece of papers . His first tcell count was not 400 but 300. So that makes the drop to 250 in two months not as big, but still significant.
Bad news on his CD4% - it was 13% in november, and went down to 10% in january.
More bad news : the result of his genotype test from january isn't back yet !
The doctor said all the genotype tests from the clinic are being held currently while waiting for Ryan White funds. His blood sample was sent to the other lab but they are waiting for payment to give him the result. I find this scandalous after 6 weeks for a condition that could become life-threatening, but the doctor didn't seem concerned that this is delaying the start of his treatment since he is still asymptomatic. I am very upset over the held genotype and funding issue, and the county health supervisors are going to hear from me. The doc can't prescribe his meds until the genotype results are back. I would personally rather not wait for my bf to start meds until he is in the hospital with some serious infection !
The doctor did say that it's possible my bf is still within the 6-months window of infection, and some people's immune system takes a fast dip, but then goes back up, until it declines again slowly. However, based on his numbers so far he said it was more likely my bf was a fast progressor.
On my request, the doctor ordered another CD4 count and VL for my bf today, and he drew the blood. Those results shouldn't be held due to funding since they are done right at the clinic.

[DavidinCA92284]

Hopefully your doctor has also done an RC test.  RC stands for Replication Capacity.  This test, rather than Tcells or Viral loads, will help indicate whether someone is a fast progressor.  Why?   Replication Capacity indicates the ability for the virus to multiply without the presence of drugs.