High CD4 Count and Undectable Viral Load may not mean you are not sick:

[jm1953]

Hey Members,

Someone asked me in another post if my numbers are so high why am I sick.  My last tests taken a month ago were CD4 987, 38% percentage, undectable viral load.  I don't think anyone has a definitive answer to this, especially for us being HIV positive over 25 years.  Docs have said it is a combo of having HIV so long, the toxic meds we took earlier on because there wasn't anything out there, our age, and genetic disposition.  And of course stress.  I have friends over 30 years poz doing fine, working, and almost non-progressing.  I'm 59 and docs say I have the body and mind of a 70 year old.  But it's all individual. 

The best explanation I have had was from my rheumatologist who has been treating me for auto immune problems mainly inflammation of the joints, osteoarthritis, carpal tunnel, and such.  She thinks even though I have high CD4's the t cells are kind of going wild not knowing really what to do.  In my case attacking my own body like lupus.  She said it's like I'm going through immune reconstitution syndrome.  Whatever the explanation, after having this for so long, and having as many medical problems which continue to escalate, I don't take alot of stock in CD 4 numbers, and viral load anymore having this for so long.

But don't take my word for it or my docs.  Get your own opinions, and everyone's body is different with this thing.  I just don't get all excited when I get good HIV numbers and everything else is in the dumpsters.

Again, I repeat I know people 30+ years with AIDS doing just fine and functioning normally.  Even working.

Just wanted to throw this out.

Best,

JM

[NY2011]

JM,

I think it's an importnant post. Thank you for bringing it up. My lab results are considered excellent, but I often think about whether they are telling the full story, and how it will all weigh on me as the years go on.  HIV is a very serious disease.    I'm surprised that people seem baffled that, despite their good lab results, cd4 and vl numbers, they are getting sick. 

I hope that you are getting good treatment, staying ahead of the curve, and that you get well soon.  Thanks again.

[Rockin]

Hey Members,

Someone asked me in another post if my numbers are so high why am I sick.  My last tests taken a month ago were CD4 987, 38% percentage, undectable viral load.  I don't think anyone has a definitive answer to this, especially for us being HIV positive over 25 years.  Docs have said it is a combo of having HIV so long, the toxic meds we took earlier on because there wasn't anything out there, our age, and genetic disposition.  And of course stress.  I have friends over 30 years poz doing fine, working, and almost non-progressing.  I'm 59 and docs say I have the body and mind of a 70 year old.  But it's all individual. 

The best explanation I have had was from my rheumatologist who has been treating me for auto immune problems mainly inflammation of the joints, osteoarthritis, carpal tunnel, and such.  She thinks even though I have high CD4's the t cells are kind of going wild not knowing really what to do.  In my case attacking my own body like lupus.  She said it's like I'm going through immune reconstitution syndrome.  Whatever the explanation, after having this for so long, and having as many medical problems which continue to escalate, I don't take alot of stock in CD 4 numbers, and viral load anymore having this for so long.

But don't take my word for it or my docs.  Get your own opinions, and everyone's body is different with this thing.  I just don't get all excited when I get good HIV numbers and everything else is in the dumpsters.

Again, I repeat I know people 30+ years with AIDS doing just fine and functioning normally.  Even working.

Just wanted to throw this out.

Best,

JM

Doesn't this have to do with age as well? This post could scare the hell out of a lot of people

[jkinatl2]

Doesn't this have to do with age as well? This post could scare the hell out of a lot of people

It obviously has, apparently, according to the first reply.

Thing is, a person who has had HIV for the last 25 years, who suffered at least ten of those years without any medical intervention except for AZT (and battling various fires as they spring up) and is almost 60 years old is going be way more likely to have a different experience with HIV from this point forward.

A very different experience.

While it is absolutely true that some people who have had HIV/AIDS for longer than, say, 20 years are doing very well and functioning, many more people with that same profile are not, and have not.

Myself, I have been HIV positive since roughly February of 1993. I've survived multiple bouts of PCP, and my cd4 count was, in 2005, 12 - with a viral load in the multiple millions.

Now I am on a good regimen, I am faithful (more or less) to my prescriptions, and I boast about 215 cd4 cells, with no detectable viral load. I go white water rafting, skydiving, and participate pretty fully in an involved life that includes volunteerism, community service, bowling, throwing dinner parties, and occasionally dressing like a hobbit.

Yet my immune system is not at all robust, nor is it likely to become so in the future.  Having essentially been a guinea pig for the first generation of every new drug development, I am just happy to be alive. I am lucky, likely thanks to genetics, that I have never developed any lipo issues, and every extra pound of fat I carry I can basically blame on /thank bourbon and beer.

Thing is, your mileage may vary. And if you - AS YOU - read stories here, testimonials, please read thoroughly. Of course a 60 year old will have had a different HIV experience than a 30 year old. Of course a person with 20 plus years of infection, numbers notwithstanding, is likely to have a different HIV outlook than a person who is newly diagnosed - even if they have the exact same numbers.

The numbers and percentages are a very important part of determining one's journey with HIV - but many, many other things come into play. Age, lifestyle, number of years with the disease, lowest recorded cd4 count, a history of OI's, et al.

Honestly, if the OP's posting scares someone, maybe they are LOOKING to be scared.

Which, though an understandable human trait, is often a self-fulfilling prophecy.

These forums are full of great information, and great wisdom. It is inhabited by people from all walks of life and all over the world. We have members here who are not even of drinking age, and members who are in their 70s - at least.

Critical thinking and analysis really comes in handy when  determining which information, which person's experience may mirror your own. We are, thankfully, more than the sum of the numbers many of us post on our signature lines.




 

[drewm]

Critical thinking and analysis really comes in handy when  determining which information, which person's experience may mirror your own.

Well said.

[OneTampa]

Excellent thread.  May I add several spools?

>I will be 60 years old next year
>Been diagnosed HIV positive going past 27 years
>I was diagnosed at around 75 CD4
>I have taken low dose HIV meds now going on 11 years
>I have taken meds since the AZT days and have been about 96 percent compliant
>I have been non-detectable for over 10 years
>I am averaging CD4 around 750. I got latest labs last week. I went over 800 CD4 in 2008.
>I was in the hospital for about a week 5 years ago for a middle ear infection that resulted in balance issues
>I had a re-occurrence of Bell's Palsy (and recovered quite quickly) but it was determined not to be HIV related as I had a prior occurrence of the Palsy over 30 years ago
>I did have facial lipo and got Sculptra and Radiesse injections at the temples. Good results.  Hope to go in for another session later this Summer.
>Otherwise, I never had to miss work for HIV related illness in over 27 years and feel very well physically and mentally.
>Involved in a number of activities and even went back to school to get a graduate degree completed in 2010 (with a 3.70 GPA) and a cum laude undergraduate degree completed 10 years earlier.

Clearly each person's mileage may vary.  Additionally, I think genetics play a larger role than people think.  That combined with other factors such as compliance, stress reduction, general physical and mental health, and body tolerance to medications are also relevant.

I don't know how long my good health situation will last but I can honestly tell you that my doctor continues to marvel and so do I.

That's my $2.56 worth.

Take care everyone.

[Pilot]

My doc kind of sums it up this way....the virus is getting older and so are you. The good numbers are nice but as you get older things always change and that is something that you will have to live with.

[elf]

Geroprotector is a therapeutic that aims to affect the root cause of aging and age-related diseases, and thus prolong the life span of animals.[1] Some possible geroprotectors include melatonin,[2] carnosine,[3] and metformin.[4]

http://en.wikipedia.org/wiki/Geroprotector

[Newguy]

My mom is a health disaster! She is almost 60 and has been in and out of the hospital for the past 30 years. She has never smoked, never drank and she is HIV negative.

[jm1953]

Doesn't this have to do with age as well? This post could scare the hell out of a lot of people

Age does have alot to do with this.  And everyone's posts are well taken in this thread.  The last thing I ever wanted to do was scare people.  I was just translating my experience, and what docs have told me what's going on.  We all know this is disease is different in all of us, so my experience may not equate with everyone else's.  I think we are very lucky to be alive at this point as long termers.  But in my case, not at the expense of so many weird mystery illness's my docs don't have any answers to and so I'm pretty much left in the position of treating myself with the treatments I feel I need whether it be nutrition, exercise, accupuncture, meditation, whatever.

Did not post this to offend or scare anybody. 

Best to you,

Jeff

[Mishma]

I've paid more attention to my CD4/CD8 ratio  (20%) than absolute CD4 counts and plasma viral load for several reasons:

1) HIV reservoirs in the brain and gut which many current drugs don't penetrate
2) Many of the CD4 cells are dysfunctional due to chronic activation
3) I've been healthier with higher viral burdens and lower CD4s in the past
4) I think of HIV as a DYSregulation of our immune response rather than simply a immunodeficiency, ie absence of CD4 cells

[SASA39]

To all of you above : thanks for posting.
49 yrs , nadir VL was at therapy starting and testing positive 7 years ago - 58.
At last test CD4 was 1142, but I was feeling poorly due to a joint arthritis problems , luck of physical exercise and high blood pressure.
Also I have noticed in several posts, here and there, that people who have a real high CD number over 900-1000, tend to feel more sick , and I`m just guessing that a reason could be a kind of IRIS symptom , but in a undergoing way.
I was feeling better when my CD was 600-800.
Any good thoughts about that ?
Also, if one is interested to solve a joint /cartilage problems ,a PRP method is the best , also considering the fact that the whole part of tube equipment which has been used to distillate plasma is to be thrown away , so even the HIV+ person could use it without a risk to infect others , or to be infected by them.
( see my earlier post about this topic)
Take care & CU !
Regards from Serbia.

[2tcells]

I will just be happy to see 60 years old, but im not even 30 so it seems along way off

[Joe K]

Age does have alot to do with this.  And everyone's posts are well taken in this thread.  The last thing I ever wanted to do was scare people.  I was just translating my experience, and what docs have told me what's going on.  We all know this is disease is different in all of us, so my experience may not equate with everyone else's.  I think we are very lucky to be alive at this point as long termers.  But in my case, not at the expense of so many weird mystery illness's my docs don't have any answers to and so I'm pretty much left in the position of treating myself with the treatments I feel I need whether it be nutrition, exercise, accupuncture, meditation, whatever.

Did not post this to offend or scare anybody. 

Best to you,

Jeff

Hey Jeff,

Thank you for sharing your experience, as it is important for members to read about our various experiences with long-term HIV infection.  Understandably, some members are alarmed when posts like your appear, but nobody is suggesting you posted your experience to offend or scare anybody.

Joe

[EmilyRay]

After living with my positive partner for two years, I agree with the OP's opinion. My GF's numbers are decent enough, but her quality of life is not always good. She can't leave the house at all in the morning and when she tries, she ends up vomiting a few times before leaving. It is hard to watch, but her courage in facing it with a positive attitude most of the time is what I love about her. Earlier in the year when she passed her 5 year anniversary of the diagnosis she had some real fears surrounding her own mortality. But, she's my hero!

EmilyRay

[Ann]

After living with my positive partner for two years, I agree with the OP's opinion. My GF's numbers are decent enough, but her quality of life is not always good. She can't leave the house at all in the morning and when she tries, she ends up vomiting a few times before leaving. It is hard to watch, but her courage in facing it with a positive attitude most of the time is what I love about her. Earlier in the year when she passed her 5 year anniversary of the diagnosis she had some real fears surrounding her own mortality. But, she's my hero!

EmilyRay

Emily, as someone who is not hiv positive, you should not be posting in forums meant for hiv positive people only. Please see my response to you in your (now moved) thread; "Disease progression and time of infection"

Please DO keep posting on behalf of your partner, but only post where you're permitted. Thank you for your cooperation.

Ann