My Partner

[SANJUANDUDE]

   My partner has had a consistent less than 200 t-cells for the past six years, and he is still doing "ok."  I didn't say great.  A couple of months ago, he had an aches and pains thing going on in his legs, but that seems to have passed.  He did some research and thought he may have mylopathy.  He then contacted his ID doctor at the VA and the pysician informed him with an undetectable viral load, the liklihood of that is not great at all.  I was happy to hear that.  However, he does have "hairy tongue" or black tongue.  it began to go away with acylovir treatment, but then came back.  Has anyone else here experienced this???  Will this go away or is he stuck with it???

I did hear from one gentleman who siad that his CD-4 count was down to -2- but he was able to get it back up again to around 350. 

http://timehasshownme.com

[Rockin]

  My partner has had a consistent less than 200 t-cells for the past six years, and he is still doing "ok."  I didn't say great.  A couple of months ago, he had an aches and pains thing going on in his legs, but that seems to have passed.  He did some research and thought he may have mylopathy.  He then contacted his ID doctor at the VA and the pysician informed him with an undetectable viral load, the liklihood of that is not great at all.  I was happy to hear that.  However, he does have "hairy tongue" or black tongue.  it began to go away with acylovir treatment, but then came back.  Has anyone else here experienced this???  Will this go away or is he stuck with it???

I did hear from one gentleman who siad that his CD-4 count was down to -2- but he was able to get it back up again to around 350. 

http://timehasshownme.com

My doctor said he has treated people with less than 50 CD4 count and the person was able to rebound and be well again. So it's not a hopeless situation I guess.

[leatherman]

I'm taking it that your partner is on antiretrovirals.  Studies have shown that often when someone has had a very low nadir (the lowest cd4 count) that it takes a long time to recover and recovery may never be "that" much. If your partner has been below 200 for many years, it sounds like he must have been very sick at one point and had a very low nadir.

I have gone through a similar situation. I hit a low of 7, 12, 23 over the span of a couple of years, then took ARV's and lived for the next 16 yrs with tcells well under 300, actually well under 250. I was prone to thrush, rashes, fatigue, and other problems. But finally after 19 yrs of meds I have now been just barely over 300 for the last year. So it can take a looooong time for anything like a "decent" recovery depending on how low you reached.

even though recovery may be slow, recovery can happen and is a good thing. even more good news is that low tcells counts aren't the end of the world. Even though for a decade I only averaged 235 (so I had counts <200 and counts >250 off and on), I haven't been back to the hospital or even very sick in over 14 yrs. It's actually not how many tcells you have but how well they work.

I can tell you that for 16 of the last 20 yrs I felt terribly sick, had tons of issues, and was often dealing with AIDS conditions; however, staying on meds and staying UD gave my body the chance to finally recover so that I can say that I now feel better than I have in 20 yrs. Tell your partner to hang in there, deal with issues promptly, stay adherent to the meds to stay UD, give it more time (yes, even more time than he's already waited hoping to recover more), and hopefully he too can reclaim some better health in the near future.

[jkinatl2]

My doctor said he has treated people with less than 50 CD4 count and the person was able to rebound and be well again. So it's not a hopeless situation I guess.

I had 25 CD4 cells about three months ago. Back up to 140. My personal low was less than 12 when I was in the hospital.

BTW those 25 CD4 cells and I had a fucking fantastic time whitewater rafting in August, for what it's worth.

[wolfter]

There are many of us here who have rebounded from single digit numbers.  I hope your partner finds the internal strength to fight.  It definitely can be done.  For me, it required a total body, mind and soul approach.

Best of luck

Wolfie

[wolfter]

BTW those 25 CD4 cells and I had a fucking fantastic time whitewater rafting in August, for what it's worth.

Is this something we commonly do when we only have a handful of CD4's left?  I too went and did the upper gulley in the New River Gorge while probably at my sickest.  2 days of fun, 2 months of recovering.  Was well worth it as I thought it'd be my last great adventure.

Wolfie

Modfied to add;  Yes, I have pictures.....so it did happen.

[SANJUANDUDE]

Although I love him dearly, he should take better care of himself, such as quit smoking that stupid pipe.  The lowest his cd-4 count has ever been is 100.  Neither one of us do drugs or drink alcohol, so those things are not dragging his count down.  We have read up recently that somebody was on some sort of anabolic steroid and acyclovir, which helped their cd-4 count.  He is due to go to the doctor in mid-January, and I encourage him to get on a different regimen.  sometimes though, one has to want to take care of themselves and get better. 

At this time, he is on Viramune, Truvada, and a Bactrim every 2 or 3 days.

http://timehasshownme.com

[buginme2]

Deleted.

[leatherman]

quit smoking that stupid pipe.  The lowest his cd-4 count has ever been is 100.  Neither one of us do drugs or drink alcohol, so those things are not dragging his count down.  We have read up recently that somebody was on some sort of anabolic steroid and acyclovir, which helped their cd-4 count.

smoking, drinking, and/or drugs have no effect on the cd4 count (although smoking may bump it UP by about 50 or so, which means nothing). Also acyclovir and/or steriods won't increase the cd4 count.

if your partner is staying undetectable why in the world would y'all want to mess up a good thing by changing regimens? Staying UD is the biggest issue, NOT the cd4 count. He could add a PI (like Norvir) to the mix, but that wouldn't change his cd4 count. Honestly, there really isn't anything to do to increase a person's cd4s; but to let the body recover by keeping the HIV to UD.

If there was something to jump cd4s up, there'd be a lot of us here using that solution. (I sure didn't stay below 250 all those yrs because I wanted to. LOL) It's tough but there is nothing (not even "healthy living" whatever that is LOL) to help recover CD4s. There is nothing to help cd4s except for time and sometimes it takes a long time too, as in decades even. Yet other times, not even time helps. That's just how it is.

by the way, I have had thrush more times than I can count; but had never heard of "black tongue". You should probably read up on it (your partner isn't taking a lot of Pepto Bismol is he??), because it shouldn't have been the acyclovir that got that under control as it takes an antibiotics or antifungal to do that. (http://www.webmd.com/oral-health/black-hairy-tongue)

[Joe K]

Although I love him dearly, he should take better care of himself, such as quit smoking that stupid pipe.  The lowest his cd-4 count has ever been is 100.  Neither one of us do drugs or drink alcohol, so those things are not dragging his count down.  We have read up recently that somebody was on some sort of anabolic steroid and acyclovir, which helped their cd-4 count.  He is due to go to the doctor in mid-January, and I encourage him to get on a different regimen.  sometimes though, one has to want to take care of themselves and get better. 

At this time, he is on Viramune, Truvada, and a Bactrim every 2 or 3 days.

http://timehasshownme.com

If you love him dearly, don't you ever mention that he is not doing enough for himself.  You have no idea how painful it can be to do everything right and your counts still tank.  I assume you are not a doctor, so why should he change his drugs?  They are doing exactly what they are supposed to do.  Maybe you should stop blaming him for being poz and realize that it is his disease and he will fight it as he sees fit.  If you were my partner I would be insulted that you thought I didn't want to get better.