Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 30, 2014, 03:03:46 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 632400
  • Total Topics: 47893
  • Online Today: 294
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Good New Numbers and CMV Update  (Read 1629 times)

0 Members and 1 Guest are viewing this topic.

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Good New Numbers and CMV Update
« on: November 08, 2010, 05:56:29 PM »
Hi everyone, 

For those who remember my previous threads on the topic, I apologize for repeating myself here, but for those who do not, here is a brief summary: back in May, after a pretty good first six years with HIV, I suddenly got very ill.  The illness wasn't particularly painful; it just involved lying in bed for three weeks with absolutely no energy and no appetite.  By the end of the three weeks I had lost fifteen pounds.  It turned out to be a new CMV infection--and yes, it has been established that I had not had CMV before and this was a first infection. 

For better or for worse, I had my labs right at the end of this illness, and the numbers were terrifying.  Here are the three sets of labs prior to the illness: 

Aug. '09:    CD4 688    30%     VL 19,571
Nov. '09:    CD4 641    27%      VL  9,598
Feb. '10:    CD4 638    27%      VL  4,480

During:

May '10:     CD4 687      9%      VL 799,000

A month after the illness:
 
July '10:     CD4 600     21%     VL   31,000
 
And now:
 
Nov '10:     CD4 682     24%      VL  15,000

The July numbers were mostly good but still significantly worse than the pre-CMV norm and it was still possible to worry that they represented the beginning of a decline.  The new numbers would appear to remove that worry entirely. 

There are other bits of good news too.  At the time of the illness there were some bad liver numbers, anemia, and low calcium.  By July the liver was back to normal but the anemia and low calcium remained.  Now I am no longer anemic and calcium is back to normal too. 

The only thing worrisome now is a percentage which is still lower than ever before the CMV; but it is higher than three months ago and my doctor thinks it probable that this is a case of slow recovery. 

CMV is a member of the herpes family of viruses and apparently my body reacted badly to it.  Besides the ridiculously high VL at the time of the illness, I had a string of wierd problems throughout the summer that were oddly reminiscent of my sero-conversion year.  For the past two months I have been back to the pre-illness norm: slightly less energy than I should have, but otherwise all is well. 

The moral seems to be not to panic.  Neither one set of bad lab results nor a serious illness means that things are irreversible.  I'm a little embarrassed to remember how much I panicked at the time!  Thanks so much to everyone here who helped me through that difficult few months!

Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline WillyWump

  • Member
  • Posts: 7,100
  • 1DPxR156NnouErf4f51CsCMubMYw84j5Kv
Re: Good New Numbers and CMV Update
« Reply #1 on: November 08, 2010, 06:07:19 PM »
Wow Nestor, Scary about the CMV infection, especially with pretty decent numbers pre-illness. Jesus your percentage was in the crapper in may, hard to believe the precipitous decline.

So glad you are feeling better, and that your numbers are rebounding. Very good moral not to panic, I will take that to heart.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline eric48

  • Member
  • Posts: 1,117
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Good New Numbers and CMV Update
« Reply #2 on: November 08, 2010, 07:35:52 PM »
So funny you are posting today, as I was preparing a PM for you. In fact, I am pursuing the CMV/HIV immune system impairment issue
as you can see in my theread here (no very popular since most people do not give a damm as long as they are safe from CMV complications (PCP, etc...)

http://forums.poz.com/index.php?topic=35140.0

But me, I am interested in the relationship CMV/immuno-aging

I am currently working, with one smart guy friend of mine, on a mathematical model that would predict time-to-UD once someone starts the meds, based on people's history/profile, etc.
We would like to include CMV serostatus in our model, but, it is quite hard, since there is only very few CMV neg /HIV + /under meds that we know of

That model works pretty fine and we where playing on applying this model to the only person in our 'cohort' that had a CMV seroconversion while being HIV and under CD4 monitoring.

Based on our model, we had predicted last week end that your numbers would come in the range of 13k ! Not far , isn't it.

This model, which we are still working on, seems to predict that your VLs will from now on in the 15k range (and adios to the old 5K average - but note that we may be wrong also)
It is also predictive of a higher CD8 percentage, therefore a lower CD4 percentage could be expected.

Once again this is only our version 3 of our model (version 1 and 2 were not satisfactory enough)

Because our model is for people under meds, it is not designed to be a predictor of time-to-require meds for people how have not yet initiated meds

It nonetheless confirmed that CMV neg was indeed your trump card in this game. (as you had nicely pointed out in your previous posts)

Since you were safe from CMV induced immuno-aging and is now at risk of both CMV induced immuno-aging and HIV induced immuno-depression-and-aging and eventhough your immune system
seems strong enough to postpone the time to meds initiation, you may want to initiate meds earlier in order to protect your CD4 life-expectency, as a good  CD4 life-expectency is a good predictor for one's ability to pass the cancer glass ceiling that most HIVers are exposed to.

Well these are just some thoughts, and I hope it demonstrates that you are still in everyone's heart...

Looking forward to your (future) great numbers

Eric




  
« Last Edit: November 08, 2010, 07:39:34 PM by eric48 »

Offline eric48

  • Member
  • Posts: 1,117
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Good New Numbers and CMV Update
« Reply #3 on: November 08, 2010, 07:47:44 PM »
One side note, our model was 'predicting' a VL of 145k during your CMV episode. Not so far off, considering that we do not have much data to help adjust the model... Eric

Offline tednlou2

  • Member
  • Posts: 4,765
Re: Good New Numbers and CMV Update
« Reply #4 on: November 08, 2010, 11:01:52 PM »
With these 2 recent threads about CMV, I wondered how many are checked for it.  Should we be checked for it?  Is it one of those things like HPV where most are believed to have it anyway, so what would you do with the results?

Offline wtfimpoz

  • Member
  • Posts: 418
  • Let's make biscuits!
Re: Good New Numbers and CMV Update
« Reply #5 on: November 09, 2010, 02:24:06 AM »
Welcome back Christopher!  Glad to hear you're doing better!
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline natthai

  • Member
  • Posts: 130
  • The truth is not determined by majority vote.
Re: Good New Numbers and CMV Update
« Reply #6 on: November 09, 2010, 02:13:14 PM »
CMV is a member of the Herpes family, does anyone know if Acyclovir is an effective treatment for CMV?
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Good New Numbers and CMV Update
« Reply #7 on: November 10, 2010, 10:47:22 AM »
CMV is a member of the Herpes family, does anyone know if Acyclovir is an effective treatment for CMV?

CMV is usually only treated if it causes disease. Maintenance therapy can usually be stopped if the patient has over 100-150 CD4s for at least six months. Acyclovir isn't used - valganciclovir is the approved treatment. You can read about CMV and its treatment in the CMV Lesson.

Nestor, thanks for the update on your numbers. They're really looking good. If I were you I wouldn't worry too much about your percentage. Your absolute number is great and the percentage will most likely increase over time as well. Congrats!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline eric48

  • Member
  • Posts: 1,117
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Good New Numbers and CMV Update
« Reply #8 on: November 10, 2010, 06:02:01 PM »
That CMV lesson is great !

Do a copy and paste of this lesson in your favorite Text editor, then do a replace CMV by HIV. Then read it again and see how similar this infection is to the HIV infection.

Also, as much as there is a huge difference between AIDS and HIV infection (and its consequences : inflammation, no cure, premature aging) there is a huge difference betwen the CMV disease and the CMV infection  (and its consequences : inflammation, no cure, premature aging)

CMV is an HIV on the (very) slow track. The importance of remaining HIV neg is (mostly) of importance to the HIV neg individuals/community. In the same fashion he importance of remaining CMV neg is (mostly) of importance to the CMV neg individuals.

Thanks again to Nestor for brimging up the subject. I will come back on this matter in a few week and demonstrate how his original post has (or will) help me save lots of trouble and life-years as there are upcoming development to this issue.

Cheers! Eric

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: Good New Numbers and CMV Update
« Reply #9 on: November 10, 2010, 09:17:02 PM »
Wow Nestor, Scary about the CMV infection, especially with pretty decent numbers pre-illness. Jesus your percentage was in the crapper in may, hard to believe the precipitous decline.

So glad you are feeling better, and that your numbers are rebounding. Very good moral not to panic, I will take that to heart.

-Will


If I hadn't happened to have a set of lab tests scheduled just for that moment, I would never have known about these scary numbers!  I wonder how many others had bad numbers during an illness that then rebounded afterwards? 

Eric, Thanks for the information, although honestly I'm not really sure what to do with it.  What is the nature of your model?  You say it is a model of how quickly someone who has started meds will become undetectable; how would that help to predict the VL of someone who is not on meds?  You write: 

Quote
That model works pretty fine and we where playing on applying this model to the only person in our 'cohort' that had a CMV seroconversion while being HIV and under CD4 monitoring.


Am I that person, or are you referring to someone else? 

Quote
Based on our model, we had predicted last week end that your numbers would come in the range of 13k ! Not far , isn't it.

This model, which we are still working on, seems to predict that your VLs will from now on in the 15k range (and adios to the old 5K average - but note that we may be wrong also)

Not calculated to cheer me up, but I am curious about how your model acheived these results. 

Quote
It nonetheless confirmed that CMV neg was indeed your trump card in this game. (as you had nicely pointed out in your previous posts)


My fear, of course, was that that would turn out to be the case, but the latest results do not seem to indicate anything of the kind.  How do you reach that conclusion? 

What are you planning to do yourself?  If it is true that CMV can be caught even from kissing, the only way to be sure to stay CMV neg would be to refrain even from kissing.  Still, I think there is a bit of a mystery here.  In fifteen years between becoming sexually active and this spring, I've had no shortage of kissing or of oral sex.  How would I have remained cmv neg through all of that and then gotten it from one encounter that involved neither?  Possibly many other factors are involved and cmv is only one piece of the puzzle? 


Ann, At the time of my initial post on the subject you mentioned having CMV yourself; that is one of the things that reassured me at the time.  I thought that if you kept your good numbers despite having cmv, maybe I could do the same.  Thanks for the kind words here! 

TednLou,

Until about five years or so ago Callen-Lorde routinely checked new patients for CMV, but they no longer do so because, in my doctor's words, there is nothing that can be done with the information.  Valgancyclovir might be tried--in fact, if my T-cells had started declining, we might have tried a short course of it for me to see if it made a difference--but it is a very strong medicine with pretty serious side-effects, and not to be taken lightly.  Of course, someone who does not have cmv, like Eric, might have yet another motive to stick to safe sex in order to stay that way, but I think we have enough motives for that anyway! 

Quote
Do a copy and paste of this lesson in your favorite Text editor, then do a replace CMV by HIV. Then read it again and see how similar this infection is to the HIV infection.


In fact, the six months since the encounter when I presumably got infected with cmv were almost frighteningly similar to the six months after getting infected with HIV, so much so that I was tempted to go back to the HIV re-infection theory after all. 

Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline eric48

  • Member
  • Posts: 1,117
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Good New Numbers and CMV Update
« Reply #10 on: November 13, 2010, 07:35:14 PM »

What are you planning to do yourself?  If it is true that CMV can be caught even from kissing, the only way to be sure to stay CMV neg would be to refrain even from kissing.  Still, I think there is a bit of a mystery here.  In fifteen years between becoming sexually active and this spring, I've had no shortage of kissing or of oral sex.  How would I have remained cmv neg through all of that and then gotten it from one encounter that involved neither?  Possibly many other factors are involved and cmv is only one piece of the puzzle? 


Do you remember how alarmed you had been during your unexpected event ?


I had done a bit of research based on the links that you then pointed out, other articles, etc.

The relationship between CMV and HIV in not straightforward. and sometimes confusing. CMV and immune systems research in made in two fields:
- the earlier stages of HIV epidemic (not so long ago, but behind us...)
- the very elderly (a very difficult cohort to work with, since, they do not stay long in the cohort for follow up , and they have numerous other problems)

What are you planning to do yourself? This is the BIG question for me right now. Some people have posted unfriendly answers to my post with regards to these matter accusing me to spread fear.
But the one who fears the most is ME. And the one who is under 100 % sexual lockdown is ME... And this is going to be the case until I can clarify things...

Being one of the few who are CMV- , can you imagine the consequences of turning CMV+ while initiating therapy. My VL would go way up, and doc would instantly declare me RESISTANT.
And I do not want a wrong interpretation of my VL numbers. I do not want any confounding factor during this period where important decision are being taken.

So currently the policy is : no kiss , no... and No... see what I mean. I feel miserable...


Here are a few findings (I have posted academic reference in other posts on same subject) which are now the core of my understanding on this matter
- prevalence of CMV is higher in some geographical regions than others
- prevalence is very high among HIVer and HIV+/CMV- may count for less than 2%
- CMV, transmitted largely from mother to child is like a PROTECTIVE bacteria. It wakes up the the immune system. puts it on alert (see your own numbers...)
In that respect, it is ridiculous to say that speaking of this subject is spreading fear...
- the other side of the coin is that being on alert full time, the immune system ages a bit faster. CMV creates a 'permanent' inflammation, and you know inflamaging among HIVer is the topic of the moment.
- CMV seems to be a add-on infection: one may carry distinct types, each having an additional effect (a difference with HIV where super infection is mostly considered low)
- many people mistakenly confuse the CMV disease and the CMV infection (pretty much like not making the difference between AIDS and HIV)
- the half life of a CD4 in a CMV+ person is lower than in a CMV neg. CMV+ have more CD8s than CMV- (which by the way is why your rate of CD4 killed daily by CD8 inflammation, should be on the increase, hence a bit higher VL, which does not mean that the steady state CD4 number will not come back to your usual numbers, as you thymus may just as well compensate for the loss - that is merely a 'theory' - time and your numbers will tell...


The issue is of importance to me for several aspects:
- my sexual life (currently down to minimal)
- therapeutic decisions (understanding my VL with regards to expected patterns, my CD8/CD4 ratio, etc...)
- one little known: if I need a blood transfusion, as HIV+ / CMV- I have a RIGHT (in this country) to DEMAND CMV neg ONLY blood, which is RARE (and some times not available in ERs)..., but I can waive that right.
which should be my decision should such a case occur? Right now I carry with me a card that says BEWARE: I'm HIV + but CMV - so DO NOT transfuse non CMV neg blood. I can assure you that carrying this card is NO FUN...

Being HIV+/CMV- is NOW more worrysome than HIV+/CMV+ (now that the HIV virus can be controlled, or let's say, as long as it can be controlled...)

In the earlier days, it would have been seen as a good thing because this was one of the OI you , then , could not get...

For (HIV) treated patients, they could not care less about their CMV status.
but for untreated patients, like yourself, being CMV neg was a (small) 'plus'. too bad it is gone, shit happens, but you still have the option of becoming a 'treated patient'.

Me, as a HIV treated patient, is taking he risk of becoming CMV + is a big question.

Here, in this city, there is a lot of sero-sorting and barebacking clubs.

Have lived 25 years in FEAR of THE virus. That fear is gone (since the virus is home).
Should I live the rest of my (currently miserable) sex life in fear of that other one ?

Sorry for the long post, but, I was a bit shocked to read that my answers to you could have alarmed you (where as it is not my intention), and if I have, please forgive me.

the one who currently is highly worried is... me...

Cheers

Eric


 





 

Offline bocker3

  • Member
  • Posts: 3,359
  • You gotta enjoy life......
Re: Good New Numbers and CMV Update
« Reply #11 on: November 13, 2010, 09:11:47 PM »
Eric,

After reading this last post of yours, I have to say -- with complete sincerity.  You need to let go of this obsession with CMV.  You have let it take over your life.  If >90% of folks are living just fine wtih CMV, you should realize that IF you were to get it, your life wouldn't be over.  I'm not saying that you should relish the chance of getting it, but really -- you didn't let HIV stop your sex life, but you ARE LETTING THE FEAR OF CMV do so?  That makes no sense to me.  So, while I stand by my earlier statements that you are potentially generating fear in others over this -- in reality you are being consumed by the fear.

I would suggest that you seek out some counseling in this space, it might help ease your mind.  Maybe, just maybe, you haven't fully dealth with your HIV infection and it is manifesting in this?

I hope you can come to a point where you can enjoy sex again -- truly I do.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Good New Numbers and CMV Update
« Reply #12 on: November 13, 2010, 10:25:52 PM »
Eric

Even the CMV negative are mortal.

Live your life in full!

Best
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline tednlou2

  • Member
  • Posts: 4,765
Re: Good New Numbers and CMV Update
« Reply #13 on: November 13, 2010, 10:39:09 PM »
I guess I need to educate myself on CMV.  It has never been on my radar.  I had never heard of it until about 9 months ago. 

Offline bocker3

  • Member
  • Posts: 3,359
  • You gotta enjoy life......
Re: Good New Numbers and CMV Update
« Reply #14 on: November 13, 2010, 11:29:54 PM »
I guess I need to educate myself on CMV.  It has never been on my radar.  I had never heard of it until about 9 months ago. 

Oh Ted,

You have enough to worry about -- leave this one alone!

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline tednlou2

  • Member
  • Posts: 4,765
Re: Good New Numbers and CMV Update
« Reply #15 on: November 13, 2010, 11:59:06 PM »
Oh Ted,

You have enough to worry about -- leave this one alone!

Mike

I was thinking the same after I wrote it.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.