Strategies for the last few days?

[Nestor]

I'm sure many people here have had labs upon whose results much depended, or about which you had great reason to be nervous.  Did you have any strategy for keeping sane during the last few days before finally finding out the results of those labs? 

Here is a brief recapitulation of my situation, which some of you may remember from the (wrongly titled) "reinfection!" thread:

May 16th--suddenly got sick with fever etc. 
May 28th--had labs done at height of illness
May 31st--doctor called saying VL was so high she suspected re-infection with HIV
June 1st--had more tests done
June 7th--met doctor.  Found out that infection with CMV was the cause of illness and that my VL was 799,000. 

So I've had that stratospheric VL hanging over my head for eight weeks now.  Also, Dr. Sonnabend chose this moment to write a whole series of articles about how CMV and HIV work together to hurt people, and how people infected with CMV progress to AIDS faster than those who do not have it; you can imagine the effect those articles have had on me.  It suggested that maybe the only reason my numbers were so stable for so long was that I didn't have CMV and, now that I have it, I can expect to deteriorate quickly. 

I had a new set of labs done on July 13th and on Monday afternoon I shall (finally!) find out the results of those labs. 

All of this comes at an awkard moment.  For one thing, yesterday happens to have been my 37th birthday.  For some reason 37 sounds much older than 36--"late 30s" rather than "mid-30s"--and I feel as if 40 is right around the corner.  Then, three days ago was my 6th anniversary of being an idiot and getting myself infected with HIV: I am now in my seventh year of living with this virus and that too feels somehow momentous or even ominous, as if the seventh year were somehow doomed to be different. 

By the middle of June I had made a complete recovery and I have never felt better in my life than I have since then.  For most of that time I succeeded in forgetting about the VL and just enjoying my life, but suddenly a few days ago I started becoming extremely agitated.  I didn't allow it to spoil my birthday but it didn't help.  Now that I only have 48 hours left of waiting it feels like an eternity, and suddenly a big part of me doesn't want to go in to find out the results for fear that they'll be really bad.  I wouldn't really not go, but suddenly I am approaching it with dread. 

Oddly enough I didn't feel anything like this when approaching my first set of labs after diagnosis; perhaps I was too mentally numb at that time to feel anything at all. 

So how have others gotten through similar "last days" before getting difficult lab results back? 

[max123]

happy birthday, nestor and...your not old 

honestly, there are only two viable options: relax or freakout. ask yourself what are the best and worst scenarios regarding the results, prep yourself for both and think positively. worrying is not going to change the result and the stress of it isn't good for you.

so with your cmv diagnosis, has your doc recommended cmv specific av therapy or haart? if not, are you worried that discussion in hinged on this particular set of results?

max

[Granny60]

 I learned a long time ago there is nothing worth freaking out about. CMV doesn't get to be a major concern till your CD4 gets below 50. Trust me, my doctors warned us all about the risks of CMV when I was < than 20. Your CD4 is fantastic. Keep it up there and the HIV bombshells will  just be little blips.  We have lived through so many major catastophies in our lives that if a meteor fell through the ceiling, it would be just another,  Oh well,  time to get the broom.  Whatever your results are,  they were the same the day they took the draw,  the same today, and probably the same  the day you get the results. Don't worry about it. You've lived with HIV for 6 years  so you know you can handle the little buggers.  You are already ahead of the game. I have had HIV for 19 years and on meds for 3.  You can handle this too.Luckily I didn't have CMV but came back from  near dead from AIDS.  Many Have.  MY Husband does have CMV with HIV and he declined faster, but he is on rebound now too. 85% of the population has CMV.  Take you meds, keep your CD4 up and you'll be better in no time. Test results are not the end. Hang in there;  the results just give you a starting point to stage a worthwhile fight.   Happy birthday! The 30's and 40's are wonderful years!

[tednlou2]

That is so strange that you had pretty good numbers and then it crashed with CMV.  I have these fears myself.  Everyone tells me I'm silly and being irrational.  They say since I'm montoring my numbers now, I don't have to worry about getting sick with something like CMV, Toxo, or pneumonia.  I always tell them I got pneumonia with what I would assume were just as good or better numbers than I have now.  It makes me think even with "good" numbers, something strange can happen sometimes.

So, they think you got reinfected which caused your vl to go sky high and CD4% crash--and this may have allowed a CMV infection?  Either way, I hope things get better.  I know they will physically.  I mean emotionally for you.  From the time I give blood to the time of my appt, I've noticed a have really bad anxiety.  I can't imagine waiting to see what my numbers looked like after a vl that high.  You're not on meds yet?

[Ann]

Jeeze, Ted, don't you remember this discussion which you yourself participated in? ~facepalm~

[Rev. Moon]

Just let time take care of time.  Stay busy with work, watch a True Blood marathon, go to the park and read a book, anything that keeps your mind occupied with other matters. Just don't over-intellectualize something that's beyond your control at the moment.  Whatever the results will be they will be.  

If it is time to start meds --which I thought you had-- then it is time.  Regardless of how these numbers look like there is one solution for it: science.

Good luck at any rate.

[Nestor]

Hi guys,

First, thanks for the birthday wishes--including the very nice private message.  I'm aware that I'm not old, but sometimes I'm beginning to act as if I were--describing as "recent" events which took place twenty years ago, making comments about the younger generation, etc.  Plus, a first white hair has sprouted dramatically in the middle of my head.  Alas.

 

honestly, there are only two viable options: relax or freakout. ask yourself what are the best and worst scenarios regarding the results, prep yourself for both and think positively. worrying is not going to change the result and the stress of it isn't good for you.

max

This is true, and most of the time I think I've gotten pretty good at not letting HIV dominate my life, approaching the lab test results with a philosophical air.  I don't know why this particular time was different.  

so with your cmv diagnosis, has your doc recommended cmv specific av therapy or haart? if not, are you worried that discussion in hinged on this particular set of results?

max

She has not recommended either, although with that viral load it is obviously hanging in the air.  Now here's the funny thing: having t-cells decline at some random time and starting HAART would not, in themselves, have bothered me.  But having that happen now, as a result of getting CMV from a random sexual encounter back in March or April--that would bother me a lot.  In the former case I would say that I had done my best, six years was not a bad run, and the nature of the virus took its course.  In this case, I would spend the rest of my life saying that I might have had years and years more if only I hadn't gone out and needlessly gotten CMV--see the difference!  It would be my "fault", like getting HIV itself.  

ask yourself what are the best and worst scenarios regarding the results

The worst scenario, I suppose, is that I could go in and find out I have ten t-cells.  But I have been keeping relatively calm on that score with an idea that may be completely false--if there had been anything so dire, they would have called me as soon as they got the results, not let me wait until Aug. 2nd.  Is that true?

I learned a long time ago there is nothing worth freaking out about. CMV doesn't get to be a major concern till your CD4 gets below 50. Trust me, my doctors warned us all about the risks of CMV when I was < than 20. Your CD4 is fantastic. Keep it up there and the HIV bombshells will  just be little blips.  We have lived through so many major catastophies in our lives that if a meteor fell through the ceiling, it would be just another,  Oh well,  time to get the broom.  Whatever your results are,  they were the same the day they took the draw,  the same today, and probably the same  the day you get the results. Don't worry about it. You've lived with HIV for 6 years  so you know you can handle the little buggers.  You are already ahead of the game. I have had HIV for 19 years and on meds for 3.  You can handle this too.Luckily I didn't have CMV but came back from  near dead from AIDS.  Many Have.  MY Husband does have CMV with HIV and he declined faster, but he is on rebound now too. 85% of the population has CMV.  Take you meds, keep your CD4 up and you'll be better in no time. Test results are not the end. Hang in there;  the results just give you a starting point to stage a worthwhile fight.   Happy birthday! The 30's and 40's are wonderful years!

Thank you so much for this wonderful message!  And your story is an inspiration!  

That is so strange that you had pretty good numbers and then it crashed with CMV.  

Well, let's not see the glass as half empty.  Two weeks into the most dramatic illness of my life, I still had 687 t-cells.  That's pretty impressive, even if the VL is frightening!  

I have these fears myself.  Everyone tells me I'm silly and being irrational.  They say since I'm montoring my numbers now, I don't have to worry about getting sick with something like CMV, Toxo, or pneumonia.  I always tell them I got pneumonia with what I would assume were just as good or better numbers than I have now.  It makes me think even with "good" numbers, something strange can happen sometimes.

Let's take this a step further--even being HIV negative, something strange can happen sometimes.  HIV negative people get sick all the time.  What I had was initial CMV infection, which creates a mono-like illness in some people, regardless of HIV.  What we do not have to worry about, as long as we keep a few t-cells, is CMV causing blindness or other things.  

Actually Ted, your story is one of the main sources from which I have derived consolation throughout these nerve-wracking eight weeks.  You got pneumonia and were ill for some time, just as I was.  Your t-cells went all the way down to 171; a month later they were at 1,081, and while that might have been partly due to the sustiva, the fact is you have kept up fantastic numbers ever since then.  In other words, it is possible to have bad numbers from an illness and then have them rebound.  That is obviously what I am hoping for as well.  

So, they think you got reinfected which caused your vl to go sky high and CD4% crash--and this may have allowed a CMV infection?

No--reinfection was the first thing my doctor suspected because it was bizarre for VL to be so very high.  I got CMV through sex, and since it appears to be a sufficient explanation for everything that has happened since, there is really no further reason to suspect re-infection unless the HIV genotype test, whose results I have still not learned, were to reveal something.  I shall address the CD4% question in a moment.  

From the time I give blood to the time of my appt, I've noticed a have really bad anxiety.  I can't imagine waiting to see what my numbers looked like after a vl that high.

I've noticed the exact same thing, and up until this little affair I'd done a pretty good job of managing that.  It doesn't help that this time there was a three-week wait between giving blood and getting the results.  But I'm sure the month of waiting after your CD4 count of 181 was pretty tough!  

Just let time take care of time.  Stay busy with work, watch a True Blood marathon, go to the park and read a book, anything that keeps your mind occupied with other matters. Just don't over-intellectualize something that's beyond your control at the moment.  Whatever the results will be they will be. 

If it is time to start meds --which I thought you had-- then it is time.  Regardless of how these numbers look like there is one solution for it: science.

Good luck at any rate.

Good advice, and I've been doing more or less the equivalent of all those things.  The point of this thread was supposed to be for us to share our strategies for staying sane before getting lab results back, so thank you for describing yours. 

Now, in a private mesage I get the following questions:  

with a VL so high and that percentage down so low why did you not decide to go ahead and start meds? Should the treatment for the CMV has some sort of effect of lowering that VL?

First, there was no treatment for CMV.  It's one of those things like the flu or chicken-pox; it simply needs time to get through your system.  Remember we're not dealing with the OI that does horrific stuff to people with ten t-cells; we're talking about primary CMV infection that could happen to anyone.

Why didn't I start meds?  On the basis of one high VL that came at the height of illness and that might even have been a lab error, and with 687 t-cells that somehow managed to survive not only that level of virus but two weeks of illness, lack of nutrition (I was eating almost nothing) lack of sunlight etc.?  

As for the percentage, my doctor herself said it was nothing to worry about.  When we get an infection, our CD8 cells--the killer cells--increase in number.  I had a dramatic increase of them in response to CMV.  The CD4s did not decline; it is just that the CD8s increased.  That is a normal state of affairs during illness.

As for the VL, one possibility raised not only here in this forum but by my doctor herself was that this was a lab error--but not, according to my doctor, a random error but one provoked by CMV.  The CMV or the antibodies to it could have screwed up the reading somehow.  That is why I had another lab test on July 13 instead of waiting the usual three months.

In response to my statement that by the middle of June I had made a complete recovery:

complete recovery? of what in particular? certainly, and yet sadly, you weren't having a recovery from the hiv infection.

Recovery from CMV, or at least (I suppose the CMV will always be there latent in my system, alas) from the illness it caused.  By recovery I mean I regained my appetite, stopped losing weight, returned to sleeping a normal number of hours, no longer felt dizzy when I tried to stand up, had energy, felt good, etc. etc. etc.  I laughed one night when I was having trouble falling asleep and realised that I had not had that experience in almost a month: during the CMV period I certainly had no trouble sleeping and at the height slept twenty hours a day.  It was funny that a problem should be an indicator of health!  When at the advice of some forum members I started exercising I found I could only do five push-ups and one chin-up; that might have been residual weakness from CMV.  Now I am up to forty push-ups and thirteen chin-ups: still poor but a huge improvement.  

Anyway--in about twenty more hours I learn my fate!  Now to get through those twenty hours in one piece mentally.....

[eric48]

Hi,

This discussion on CMV is highly interesting for me...

I am CMV neg. which my doctor thought was unexpected (most people are CMV+)

I had done some research on CMV and found out that there is a number of doctors who are showing a great interest in CMV: those who are study the very elderly.

They found out that while CMV prevalence is high (and growing with age classes), the CMV prevalence lowers in the very elderly: in other words CMV + are more likely to die at a younger age than CMV -

CMV, like HIV, is a chronic infection that is kept under control by the immune system at the expense of consuming CD8s. As people grow older, their CD8 pool diminishes and a relatively greater number of CD8 are used to keep CMV in check (thus CD8 available for other infections are, all other things considered, less). This is a recent finding, I had kept the link on some other computer...

The association/comparison that is being made recently between CMV and HIV is not in the perspective of CMV decease as an outcome of AIDS, but, in that they are both chronic infections, kept under check by CD8s and some lessons learnt on one may help on the other.

CMV is said to be transmitted through saliva. Any idea who you got it?

I think that it is much better to be CMV+ and HIV- , but, since I am the opposite, I am interested in this field and hope to stay CMV- until further is known...

By the way, do you have the link to   Dr. Sonnabend 's discussion ?

Many thanks in advance

Eric

[Etay1207]

How did your tcells increase in the same time period that your VL skyrocketed?  

[eric48]

hi,

when the CD4% is that low, the margin or error on the CD4 count is in the hundred.

Therefore the slight change in CD4 count is within the margin of error and not significant.

I suppose...

Eric

[max123]

glad to hear that you've kept yourself occupied, nestor.

now, as far as feeling old, etc...snap out of it. age is only a number.

regarding beating yourself up over the potential for having recently contracted cmv, honestly it's pointless. for all you know, you've been harboring it for years and only as of late has it become active. either way, whether it's hookup related from april 2010 or april 1990, it doesn't make you a bad person. what it should do is remind all of us pozzies of our increased susceptibility to the host of stds out there. of course, that needs to be balanced with healthy sexual fulfillment as best possible. remember, none of us are perfect. shit happens.

lastly, i'm pretty confident that there are a few antivirals to treat cmv, similar in theory to taking valtrex prophylactically as a means of keeping genital herpes at bay. you may want to further discuss that with your doc.

good luck tomorrow!

max

[Nestor]

Hi,

This discussion on CMV is highly interesting for me...

I am CMV neg. which my doctor thought was unexpected (most people are CMV+)

Congratulations on being CMV neg!  Please try to stay that way!  I sure wish I still was.  

I had done some research on CMV and found out that there is a number of doctors who are showing a great interest in CMV: those who are study the very elderly.

They found out that while CMV prevalence is high (and growing with age classes), the CMV prevalence lowers in the very elderly: in other words CMV + are more likely to die at a younger age than CMV -

CMV, like HIV, is a chronic infection that is kept under control by the immune system at the expense of consuming CD8s. As people grow older, their CD8 pool diminishes and a relatively greater number of CD8 are used to keep CMV in check (thus CD8 available for other infections are, all other things considered, less). This is a recent finding, I had kept the link on some other computer...

Gee thanks--just when I thought there was nothing that could make me more miserable, you go and tell me this.

CMV is said to be transmitted through saliva. Any idea who you got it?

I know exactly how I got it, and that is a big part of my problem right now, emotionally.  It was actually a rather hot sexual encounter in many ways but the guy kept interrupting it to answer his cell phone which I thought absurd and rude, so to have a life-changing--and, it would appear, life-shortening infection from such an encounter would be too sad.  

I too have heard that it could be transmitted through saliva but I have my doubts.  For fiteen years I had countless sexual encounters and no shortage of kissing and I never got it.  Now, at a moment in this encounter when I had my back to the guy it suddenly went through my mind to think that he'd taken the condom off surreptitiously.  I have no idea what made me think that, but of course when two months later I get a call from my doctor asking me if I had done anything that could have caused re-infection with HIV that was the first thing I thought of.  Quite frankly, what with HIV and now this, I'm beginning to have negative feelings about sex altogether.  Is it worth it?  Bringing all this stuff into our lives and bodies?  That I now have not one but two bugs crawling around inside me plotting who knows what nefarious stuff?  

Also, way back in the 1980s, Dr. Sonnabend was urging his HIV+ patients to wear condoms: specifically so that they would not get infected with CMV!  He had noticed that active CMV infections were causing people who had been stable to progress to AIDS (hence the terror under which I have lived for the past eight weeks...)  Point is, if CMV were easily transmissible through saliva, why would he have urged the use of condoms to protect oneself from it?  

By the way, do you have the link to   Dr. Sonnabend 's discussion ?

Eric, go to the "blogs" section of this website, find Dr. Sonnabend, and look in the archives:  the main articles are :

1. http://blogs.poz.com/joseph/archives/2010/03/cytomegalovirus_othe.html

2. http://blogs.poz.com/joseph/archives/2010/04/_hiv_infection_a_dis.html

3.  http://blogs.poz.com/joseph/archives/2010/04/_hiv_infection_a_dis_1.html

4. http://blogs.poz.com/joseph/archives/2010/06/pathogenesis_of_hiv.html

They make pretty grim reading for me: the gist is that now that I have CMV, I'm going to start progressing rapidly to AIDS.  If you, in perusing them, can find anything that looks like a ray of light, please call it to my attention.  Dr. S. sure had a good sense of timing in writing all this right now!  I think I am going to write to him and ask: now that I have CMV, is there anything I can do about it?  

Thanks for your reply, Eric, and good luck!

[Nestor]

How did your tcells increase in the same time period that your VL skyrocketed?  

Etay, that is the million-dollar question, isn't it!  I've spent a great deal of time considering it.  I would alter one thing, however.  Not "why did my t-cells increase" (since the increase, such as it was, was tiny) but "why did they not decline precipitously?"

Three possible answers suggest themselves.  

First, It could be that my t-cells did decline.  Possibly a great deal.  All we know about my t-cells is that I had 638 of them at one moment one evening back in February.  For all we know, I had 887 t-cells just before the illness and the VL explosion, and the results of the May 28th tests do represent a decline--just from a high we do not know about because I hadn't been tested for it.  

Second, and to keep myself sane this nerve-wracking evening I'll use metaphor to describe it: possibly the skyrocketing of the VL was a very new event, too new to have had much impact yet.  Possibly it was on the morning of May 28th that the president of t-cell land called an emergency meeting of his whole military staff.  "Gentlemen, this cytomegalovirus will kill us all if we do not respond to it with greater force.  Therefore, I have no choice but to call three battalions from the Western Front and transfer them immediately to the East.  I have already sent a telegram to general X."  One of the chairmen of the joint chiefs of staff rises up to protest.  "But sir, this is madness!  The western front is where our men have been entrenched in stalemate against the armies of HIV for the past six years.  We're already stretched thin and can't spare a man.  The removal of three battalions will be suicide!"  The president heaves a sigh, turns to look out a window, responds: "We have no choice.  The cyto-meg invasion cannot be allowed to continue; to fail to respond would be immediate suicide.  If we repel the cyto-megs now, we might still have a chance to deal with HIV tomorrow.  It is our only hope."  An hour later, General X and his weary men begin their retreat and march towards the east.  Astonished, the HIV armies begin pouring wildly across the border; the remaining t-cell-land troops are clearly no match for them....and it is at that very moment that I sit down in a chair at the Callen-Lorde clinic and have ten vials of blood drawn from my vein.  The results of that blood test do not reflect the terrible massacre of t-cells which followed because it had not happened yet.  Hence my greatest fear: that despite the 687 t-cells which I appear to have had on that Friday afternoon, by Friday evening I was down to ten t-cells and I've been walking around with ten t-cells ever since.  Unlike you, Etay, I would not face that prospect with equanimity.  

The third possibility is very simple.  An increase in viral load may be something that can happen qucikly and easily; to diminish t-cells may take time.  Or perhaps it didn't happen at all.  Maybe through it all my immune system remained strong enough to stave off both HIV and CMV, albeit not strong enough to prevent the VL from increasing.  

Of course, there is always the fourth possibilty that the huge VL was only a lab error and that I never had it to begin with...

[leese43]

When I read your other thread I couldnt help thinking that your illness was similar to what I've just been going through. My doctors (GP & specialist) have spent the last 7 weeks trying to work out what the hell was wrong with me. I had an ultrasound last week which showed that I had an enlarged spleen...I've just read that that can be a symptom of CMV. I'm not sure if my doc has ruled this out but I'm going to be phoning her tomorrow to find out.

I had an endoscopy on Friday and they found that I had thrush on my esophegus so it could have just been that too I suppose.

[Nestor]

glad to hear that you've kept yourself occupied, nestor.

now, as far as feeling old, etc...snap out of it. age is only a number.

regarding beating yourself up over the potential for having recently contracted cmv, honestly it's pointless. for all you know, you've been harboring it for years and only as of late has it become active. either way, whether it's hookup related from april 2010 or april 1990, it doesn't make you a bad person. what it should do is remind all of us pozzies of our increased susceptibility to the host of stds out there. of course, that needs to be balanced with healthy sexual fulfillment as best possible. remember, none of us are perfect. shit happens.

lastly, i'm pretty confident that there are a few antivirals to treat cmv, similar in theory to taking valtrex prophylactically as a means of keeping genital herpes at bay. you may want to further discuss that with your doc.

good luck tomorrow!

max

Hey thanks for this too!  By the way, I haven't mentioned one little plank which I've been clinging to in the ship-wreck: one other thing which was revealed by the June 1st tests was that at some time in the past I had Epstein-Barr.  Now, EB is also discussed by Dr. Sonnabend as leading to faster progression to AIDS.  Since, despite having EB in my system, I wasn't exactly hurtling at break-neck speed towards AIDS before this, possibly my system will take CMV in equal stride?  But there is no point in all this endless speculation, as you and others so wisely pointed out.  Nineteen more hours to go....

[leatherman]

Hey Nestor, thanks for all the replies. It helps to make this place a learning place.

Plus, a first white hair has sprouted dramatically in the middle of my head.  Alas.

Happy Birthday just the same.

Don't worry too much about a white hair though. There are ways to fix that. (psst! Miss Clariol)

[Nestor]

When I read your other thread I couldnt help thinking that your illness was similar to what I've just been going through. My doctors (GP & specialist) have spent the last 7 weeks trying to work out what the hell was wrong with me. I had an ultrasound last week which showed that I had an enlarged spleen...I've just read that that can be a symptom of CMV. I'm not sure if my doc has ruled this out but I'm going to be phoning her tomorrow to find out.

I had an endoscopy on Friday and they found that I had thrush on my esophegus so it could have just been that too I suppose.

Oh dear, I hope they solve that problem!  Have you been ill for seven weeks?  My illness consisted of

1. four days of chills and fever, aches and pains, the worst headache ever;
2. four days when I felt much better, ate normally, and thought "it" had passed; and
3. Two weeks during which I didn't feel particularly bad at all; I just slept all the time, ate almost nothing (food and water tasted horrible to me when I did try to eat or drink) and felt dizzy if I tried to stand up.

I had "minor liver irregularities" (elevated something of some sort) which I had never had before; that was what first prompted my doctor to test me for CMV, EB etc. as they could be culprits in liver problems.  

I do hope you and your doctor solve your problems speedily!  So you'll be talking with your doctor tomorrow too?  I hope we both have good results!

[leese43]

I was ill for 6 weeks in total. Week 7 was last week and i was still having tests done. The first week I had pains in the left side of my head and my GP put that down to mastoiditis and gave me antibiotics. The pain went but for the next 5 weeks I had a fever, temperature was at 104 for a couple of days and then remained around 102 the rest of the time. I was dizzy and nauseous/vomiting. I couldn't eat and lost 30lbs. The weightloss was the only positive thing to come out of this..lol.

I seem to be ok now but I'm interested in knowing if she tested for CMV. I'm sure she didn't mention it,

Doc also noticed I had hairy leukoplakia and so we decided it was time to start meds.

Fingers crossed you'll get a good result tomorrow.

[skeebo1969]

   I know it's hard Nestor but try not to dwell on it much, stuff will make your head hurt.  But seriously, I know how you feel.  I worry more about my CMV than my HIV infection..  blindness, well... is just not acceptable.

  

[max123]

one other thing which was revealed by the June 1st tests was that at some time in the past I had Epstein-Barr.  Now, EB is also discussed by Dr. Sonnabend as leading to faster progression to AIDS. 

the effects that ebv appears to have in conjunction with hiv is concerning. not simply regarding the mentioned potential progression issue, but also ebv related lymphomas. again, this is all stuff that i was throwing out there at you in wtf's thread. each case is different and imo, the choice to start haart earlier (cd4>350) may be medically indicated in some people. i hear your concerns, i'm also ebv poz. that said, the issue of earlier hiv therapy may in fact be warranted for people like us. food for thought...

[tednlou2]

Nestor, I wanted to qualify my remarks about not knowing what I would do with a vl that high and using the word "crash" about your numbers.  I realized your CD4 was still good but your % dramatically dropped.  I didn't mean for that to sound all alarmist.  I was trying to sympathize, but it sounded bad.  Thanks for your great explanation.  When I went back and read your other post, I remembered that conversation completely.  I just had forgotten it was you.

Your post has caused me to do more research on CMV.  It is one of the things I haven't paid much attention to yet.  I read a checklist by Dr. Gallant of labs we should have.  I learned most people are already infected with CMV.  And according to him, there isn't much to do with the results.  What do you think about HIVers getting tested for CMV?  Have you learned anything that can be done with knowing a poz result? 

[Nestor]

Well, my long limbo is finally over.  The results are neither good nor bad; not the resounding triumph with which I was hoping to put the CMV era behind me, but very far from the  total collapse which I had feared.  

The results are:

T-cells: 600
%: 21
VL: 31,000

This is spectacular when compared with the results in May, but a little disturbing when compared with the four years which preceeded them.  For one thing, 600 is the lowest t-cell count in eighteen months, the third lowest ever, and a significant decline on just two months ago.  On the other hand, it's still pretty close to the yearly averages (which have hovered at around 650 for all four years) and not dramatically lower than what I had in February.

The percentage is the lowest ever (not counting the artificially depressed count from May) and significantly lower than the previous norm.  Should that be of concern?  The fact is that I am now what I was not four months ago: a person with CMV in his system.  As such I am probably going to have permantly higher CD8 counts and, therefore, a lower percentage.  Is this accurate?  

The viral load is the the second highest ever (again, excluding the wild number from May) and significantly above the norm of the past four years.  Still, there was a blip back in 2006 that caused no alarm.  Should this cause alarm now?  

The question of course is what all this represents.  Was I still "coming back from the brink" on July 13th?  Or is this the new norm?  Or the first step of a steady decline?  Continuing stability or the beginning of the end?  Only time will tell.  

Some good news: liver numbers, which were slightly elevated in May, are back to normal.  I do not have syphillis.  Cholesterol, which was extremely low in May, is now good.  Also, Vitamin D is normal, which is not only good but bizarre, considering the test was given at a time when I had been in bed for two weeks, eating almost nothing and getting no exercise and no sunlight.  If I was not deficient in vitamin D then, when would I be?

However, there are two bits of bad news which I find slightly ominous.  I am still slightly deficient in calcium and I am "still" slightly anemic.  The calcium issue has been raised before but this is my first time hearing about anemia.  In both cases the deficiency is "far too slight to be of concern"--literally one point below the border.  However, my diet includes lots of calcium from dairy and sardines, and lots of liver and other red meat, nuts and seeds, plus fruits rich in vitamin C, that are supposed to prevent anemia.  This suggests an impaired ability to absorb nutrients which is one of the hallmarks of HIV, and something I intend to monitor very closely in the coming months.  

However, as the curtain rises on my seventh year living with HIV, I am really not willing to conclude on a gloomy note.  To have had such an illness as I had and to have come out of it with numbers like these; still to be in this relatively good place seven years into HIV; to be in as good health as I am right now: these are things for which to be grateful.  

Thank you all for your support and encouragement in this thread and elsewhere!

[max123]

Well, my long limbo is finally over.  The results are neither good nor bad; not the resounding triumph with which I was hoping to put the CMV era behind me, but very far from the total collapse which I had feared.  
The results are:

T-cells: 600
%: 21
VL: 31,000

glad to read that your fear for the worst was redeemed.

[eric48]

Hi Nestor,

So happy for you !!

CD4 above 500 ; % above 20 ... no need to panic... I hope you will keep us posted on your future numbers as a real time follow up on post HIV CMV infection is not so common.

BTW, you were NOT heading for AIDS, at worst , heading for MEDS.

I have learned a  lot from that experience of yours. Of course, I also wished it did not happen, but still, your post help me identify one thing I did not know. I thought CMV was through saliva ONLY, I now realize it can be from SEMEN too...

For the last 25 years I had NEVER had anyone come in my mouth (my favourite, when I was younger...)
25 years!!! tell me of a frustration. Recently I was considering revisiting that policy. Your post is a wake-up call for me. to me, CMV is a (minor) impairment to the immune system. While being infected by HIV is no more a concern (guess why...) I still have to worry about CMV.

sometimes I wished I 'd be CMV+... Maybe I would allow myself that type of sex I miss so much that it makes me sick.

At least, this is one thing you do not have to fear anymore. Most other STDs can be treated/cured.

Until now, you had pretty good numbers (lucky you...). Whether you can recover this nice % you had in the past will tell us a lot.

How you got infected with the CMV mirrors how I got infected with HIV. The guy pretended to put the condom but did not. I realized very early(30 secs?) in the course of things, but obviously not early enough... And 2 weeks later... And since it was my only interaction within the previous 3 months, well...

So, buddy, I know the feeling !

I really hope you are going to overcome the psychological trauma... (I am still dealing with it) At worst, you will be heading faster to MEDS, but you know, that are not that bad...

My thoughts are with you, but honest, this is not the Apocalypse

Cheer up!

Eric

 

[Granny60]

Great numbers actually! It is not unusual  for viral load to spike to a high number after infection (or reinfection) and then  drop as you own bodies immunity whips it back  in line. Your CD4 drops over time because it finally gets worn down over a long period of time whipping those little buggers in line. When your CD4 finally gets beat down too far,  then the viral load starts back up and stays there since there is not enough immunity to keep the  virus in check any more. Some people this can take years and years to get to this point.  You may have been reinfected with the same strain ( I assume no new strain was detected)  that accounted for the temporary spike in your viral  load or the CMV virus infection appropriated  your white cells for a little while till it got its ass kicked in line.  Being it has made  such a dramatic drop again it looks like you are still healthy as a well hung horse and able to still  keep things in check.  Cheers to the report. It looks good. You still have double the number I have and I just made my biggest gain EVER.

[sharkdiver]

It's a common virus (but certainly an big issue when your immune system crashes).  I caught it from working working with kids

[Realist]

This post has got me thinking.

When I was first diagnosed, I had all the usual tests (including sexual health panel and all the antibody tests including measles etc), the only thing I was told I was "positive" for (other than HIV obviously) was CMV. The junior doctor who gave me the results simply told me most of the adult population had it, you can acquire it at birth, as a child, as an adult, pretty much at any time in a range of basic situations and I never gave it another thought.

Not sure if I should be giving it some thought now? Particularly with my not great numbers?

[eric48]

Not sure if I should be giving it some thought now

Hi,

Even if you would, CMV can not be cured.

CMV is of interest because:
- is a key player if you get down to AIDS status
- interacts with HIV (see Dr Sonnabend explanations)(and vice versa, see above)
- is a chronic infection that uses up a (small) portion of CD8
- is a impairment to extended life expectency
- can not be cured and no vaccine

In many aspects CMV reminds me of HIV.

Some aging scientist are pushing for more research for a cure or vaccine for CMV. Because the impact would be enormous, given the number of people who now get to the age where CMV start becoming a problem.

I think the science on CMV , aging, imunosenescence will bring a lot to HIV and vice versa.

Until now, few people had an interest in CMV since most people have it (and do not feel sick) and most people would die of something else (and CMV not seen as a cofactor) Does not that remind you of some other virus?

Dr Sonnabend mentions that there are very HIVers who are CMV neg. Therefore may be not so many studies.

And even if there were... Even if there were stats that show that CMV can shorter HIVer's life expectancy, there is little help, because MOST people get it before they come of age.

On the other hand if there was more research on this, then may be it could fuel more effort towards a CMV cure/vaccine.

I would be interested to know if there is a relationship between CMV status and immune system recovery after HAART.

Same as you , I can't help have a reflection on my numbers. I was surprised that my CD4 would go from 440 to 800 in less than 2 months of HAART (and % from 20 to 32...)

Being CMV neg, whether I should be (extra) carefull to maintain this status or should simply disregard this matter is, of course, a big question

Cheers!

Eric

[elf]

How was this decline in CD4(%) and rise of VL?

I felt pretty sick from the infection (february 1998) to getting tested (september 1998),
my numbers at the very test were very low CD353 //vl 300 000 and I was feeling like my spine
was going to collapse, it was the strangest feeling I had ever experienced.

[madbrain]

I have had CMV for at least as long as HIV in my system, perhaps before, and my VL never got that high. I have no idea how I got the CMV. It's just one of those tests that my doctor ordered with the HIV. Along with toxoplasmosis and a whole bunch of other things I tested positive for too. I think as long as you are no longer in the primary infection phase of CMV, you will probably be fine.

[eric48]

here is the catch about how CMV might be important for the future of immune systems:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2684090/?tool=pubmed
Immunosupportive therapies in aging

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669518/?tool=pubmed
Cytomegalovirus-seropositivity has a profound influence on the magnitude of major lymphoid subsets within healthy individuals

in this later article do a word replace , replace CMV by HIV and it is amazing how familiar the discussion becomes

Cheers

Eric

[Nestor]

regarding beating yourself up over the potential for having recently contracted cmv, honestly it's pointless. for all you know, you've been harboring it for years and only as of late has it become active. either way, whether it's hookup related from april 2010 or april 1990, it doesn't make you a bad person. what it should do is remind all of us pozzies of our increased susceptibility to the host of stds out there. of course, that needs to be balanced with healthy sexual fulfillment as best possible. remember, none of us are perfect. shit happens.

max

Hi Max,

I actually brought this question up with my doctor.  First, the antibodies were those of a recent infection.  She said that, while we cannot know whether this was a first infection, we can virtually assume that it was because it would be highly rare for someone who had previously been exposed to CMV to react so violently to a new infection.


 

Hi Nestor,

So happy for you !!

CD4 above 500 ; % above 20 ... no need to panic... I hope you will keep us posted on your future numbers as a real time follow up on post HIV CMV infection is not so common.

Thanks Eric!  I shall be the involuntary guinea pig. 

BTW, you were NOT heading for AIDS, at worst , heading for MEDS.


 

I do know that, and am duly grateful.  I suppose I said heading for AIDS as for the natural terminus--just as I might say "a Bronx-bound bus" even if I personally am planning to get off well before the Bronx.

I have learned a  lot from that experience of yours. Of course, I also wished it did not happen, but still, your post help me identify one thing I did not know. I thought CMV was through saliva ONLY, I now realize it can be from SEMEN too...

For the last 25 years I had NEVER had anyone come in my mouth (my favourite, when I was younger...)
25 years!!! tell me of a frustration. Recently I was considering revisiting that policy. Your post is a wake-up call for me. to me, CMV is a (minor) impairment to the immune system. While being infected by HIV is no more a concern (guess why...) I still have to worry about CMV.

 

Well, I performed your favourite activity probably hundreds of times for years: I not only appear never to have gotten CMV, I never got anything.  I suppose my luck ran out. 

How you got infected with the CMV mirrors how I got infected with HIV. The guy pretended to put the condom but did not. I realized very early(30 secs?) in the course of things, but obviously not early enough... And 2 weeks later... And since it was my only interaction within the previous 3 months, well...

So, buddy, I know the feeling !

 

That's really horrible--to know that such a life-changing virus could come from a mere thirty seconds without a condom!  It reminds me of the dieter's jingle--a minute on the lips, an eternity on the hips. In my case, I didn't do any oral sex on this guy at all, so if he didn't slip off the condom for that moment, then what could have caused it?  The only alternative is that Max is correct and I didn't get CMV from any recent activity at all. 

I really hope you are going to overcome the psychological trauma... (I am still dealing with it) At worst, you will be heading faster to MEDS, but you know, that are not that bad...

 

Thanks a lot.  In the interest of accuracy, while this was a bit rough, I don't think I'd call it psychological trauma.  I sure could have done without it though!  Thanks a lot and good luck to you too!

Great numbers actually!   Being it has made  such a dramatic drop again it looks like you are still healthy as a well hung horse and able to still  keep things in check. 

I sure hope so! 

I just made my biggest gain EVER. Grin

Congratulations! 

I have had CMV for at least as long as HIV in my system, perhaps before, and my VL never got that high. I have no idea how I got the CMV. It's just one of those tests that my doctor ordered with the HIV. Along with toxoplasmosis and a whole bunch of other things I tested positive for too. I think as long as you are no longer in the primary infection phase of CMV, you will probably be fine.

Madbrain, your numbers were fantastic, so if you were able to keep them despite CMV etc., that's really impressive.  By the way, when you started meds you said that you had fatigue which you blamed on the virus; do you still think so now?  It surprised me at the time to hear that someone with such good numbers could still be adversely affected to that degree.  Have you had fatigue since you started the meds? 

[max123]

Hi Max,

I actually brought this question up with my doctor.  First, the antibodies were those of a recent infection.  She said that, while we cannot know whether this was a first infection, we can virtually assume that it was because it would be highly rare for someone who had previously been exposed to CMV to react so violently to a new infection.

interesting. well, hopefully you'll appreciate a steady improvement in your numbers. i know there are diseases out there in which titers rise dramatically upon re-exposure. in fact, that's what the efficacy of the staged hepatitis vaccinia is based upon. well, as i said, don't be hard on yourself just the same. remember, shit happens...

max

[madbrain]

Nestor,

Madbrain, your numbers were fantastic, so if you were able to keep them despite CMV etc., that's really impressive.  By the way, when you started meds you said that you had fatigue which you blamed on the virus; do you still think so now?  It surprised me at the time to hear that someone with such good numbers could still be adversely affected to that degree.  Have you had fatigue since you started the meds? 

I haven't had that kind of severe fatigue again for several months. I think it was HIV causing it indeed. The meds are definitely helping, even if the lab numbers aren't that different yet.

[Hellraiser]

Nestor,

I haven't had that kind of severe fatigue again for several months. I think it was HIV causing it indeed. The meds are definitely helping, even if the lab numbers aren't that different yet.

It might be psychosomatic to some degree too.  I was actually just telling someone that I feel for the most part fully recovered except that I still fatigue a lot faster than I think I should.

[Nestor]

This is the riddle of the sphinx for me: I had mild fatigue before HIV and have had it since, and I am trying hard to figure out if it is worse now than before HIV.  I think it is a bit worse, now (sporadically, not constantly) but I'm not sure.  Then again, I'm also seven years older than I was then....Hellraiser, what might be psychosomatic?  The fatigue you feel now?  Or what Madbrain had before starting meds? 

[Hellraiser]

This is the riddle of the sphinx for me: I had mild fatigue before HIV and have had it since, and I am trying hard to figure out if it is worse now than before HIV.  I think it is a bit worse, now (sporadically, not constantly) but I'm not sure.  Then again, I'm also seven years older than I was then....Hellraiser, what might be psychosomatic?  The fatigue you feel now?  Or what Madbrain had before starting meds? 

Either really, the boost of energy madbrain feels could be psychosomatic, or the fact that I still feel like I'm fatigued despite starting treatment.  Like you say it's something difficult to put your finger on, hell people's energy level changes day to day.  Not to mention we're all constantly getting older, so that may have an effect too.