Long term non progressors

[sphinxcat]

Anyone heard this type of poz people? They are about 1 to 5% of all infections and HIV never took the charge and cd4 never drop too much....


http://www.thebody.com/Forums/AIDS/Fatigue/Q203253.html?ic=4003

[TheNormalLife]

Yes, heard of them. They won the genetics roulette and science are actually using them trying to find a functional cure for our condition or at least a way to control it. They are called if I remember correctly elite controllers and at a point we all crossed all of our fingers and toes to be one of them.

I'm pretty sure there's gotta be a few around here in the forums.

Ray.

[tednlou2]

There are also slow progressors. 

[sphinxcat]

You guys are so knowledgable....I just found a long paper and reading it.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0029844

[xman]

There's controversity if LNTP's are really safe and without any risks of illness. There's also a dubt about their inability to transmit the virus to others. I don't think that they are functionally cured.

[geobee]

My BF is one of those LTNP's.  17 years poz. Never took meds.  Undetectable, TCells hover around 500-600. 

[xman]

well his t-cell function is below the normal level. he should have at least 1100 t-cells to be considered healthy and without any risk of illness. inflammation is also a problem to be monitored.

[leatherman]

well his t-cell function is below the normal level. he should have at least 1100 t-cells to be considered healthy and without any risk of illness

the "normal" range for cd4 cells is between 450 and 1200.

so at 500-600, goebee's bf has a cd4 count in the normal range and is to be considered "healthy" (a normally functioning immune system) and is not at any special risk of illness.

Cd4s are not an actual measure of "healthiness" but a measure of the amount of tcells. Many people assume that more equals better (or healthier); but it's not about quantity but quality - hence some people are very healthy with only 400 cd4 and others are sick with 1100. What does denote "unhealthy" is when a person has less than 200, because we know that they are at a much higher risk of opportunistic infection.

anyone with a cd4 count anywhere in the range of 450-1200 are considered to have a "normally functioning immune system"

[Mishma]

The ratio of CD4/CD8 is also very informative. Many of us here have skewed ratios indicative of a chronic inflammatory state. A normal ratio is 2.0 with CD4's outnumbering CD8's. Typically ours are less than 1 and mine has been at .25 % for quite awhile. My CD4s are on the other end of the spectrum-typically over 2400.

This begs the question for those of us who are or have been un-detectable; what is driving the immune activation? I use to think it was the infected cells in our reservoirs. I'm not so sure anymore.

[Mishma]

More on the ratio and what it means for us:

http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004078

HIV-Infected Individuals with Low CD4/CD8 Ratio despite Effective Antiretroviral Therapy Exhibit Altered T Cell Subsets, Heightened CD8+ T Cell Activation, and Increased Risk of Non-AIDS Morbidity and Mortality

[geobee]

This begs the question for those of us who are or have been un-detectable; what is driving the immune activation? I use to think it was the infected cells in our reservoirs. I'm not so sure anymore.

I think -- not sure -- that being undetectable means that you have no free-floating HIV in your blood.  But there is still cell-to-cell transmission -- quite a bit of it.  [There was a thread on this].   I think that's what causes the immune activation.   For me, I've got normal TCells, but very high CD3 and CD3.  Doc says not to worry about it.

Interestingly, the doc also recommended that my BF go on meds, even tho he's always been UD without them.

[Basquo]

I'm chiming in late. I'm one of those people. VL has been undetectable at times, results today were 7000. CD4 as high as 1000, today 512. I've been feeling like crap lately, and my VL was up to 13000 in September, so me and my doctor are in kind of a holding pattern regarding meds. I was diagnosed 16 years ago, and probably infected 2 years before that.

[Brian Harvill]

As a person that has been considered to be a long term non-progresser, (being diagnosed with ARC in Feb, 1987), I still would assert that this is NOT a term that should be relied on. I have had a slow decline over the last 29 years and have finally been diagnosed as full blown in 2013. While my own cd4's remain fairly steady at about 175 (I tend to drop about 5-10 points each year), and a viral load that is still relatively low (having just become detectable over the last 4 years with a consistent report of under 5000 copies), the long term non-progresser is indeed progressing.

Personally I think the most damage to the immune system comes during times when we are fighting infections which activates the virus IMO. Each time infections are defeated, the immune system takes longer to rebound and the levels of function are damaged.

[CaveyUK]

As a person that has been considered to be a long term non-progresser, (being diagnosed with ARC in Feb, 1987), I still would assert that this is NOT a term that should be relied on. I have had a slow decline over the last 29 years and have finally been diagnosed as full blown in 2013. While my own cd4's remain fairly steady at about 175 (I tend to drop about 5-10 points each year), and a viral load that is still relatively low (having just become detectable over the last 4 years with a consistent report of under 5000 copies), the long term non-progresser is indeed progressing.

Personally I think the most damage to the immune system comes during times when we are fighting infections which activates the virus IMO. Each time infections are defeated, the immune system takes longer to rebound and the levels of function are damaged.

Brian...I do hope you are on ARV's now (as well as Bactrim for PCP/Toxo prevention as you are < 200)

cd4's drop with aging anyway (even in neg people), but in positive people the guidelines for a long time have been to start meds when you drop to 350 cells, more recent guidelines now advise starting at any cd4 count.

Just worried that you talk as though you are not on meds...

[Brian Harvill]

Caveyuk-
Thanks for the response. I am on Bactrim prophylaxis since my main health challenges have been respiratory in nature. I am also at present on a regimen of Truvada + Raltegrivir. These have not boosted my immune system, merely have allowed me to stay fairly steady, (with a small decrease over time in CD4 and a slight increase over time in the VL). But then what does one expect for being diagnosed for 29 years (which means an infection of 30 or 31 years probably). I have no real complaints about my health and decided long ago that I was NOT going to live for the disease but instead to live in spite of my illness.

As for meds, I have been slapped down for my approach to using meds so I hesitate to discuss my experiences since they are either ridiculed or dismissed altogether. Suffice to say that over the course of 29 years I have been on and off ARVs and yet I still have ZERO resistance to ANY medications, thus why fix a system that obviously works for me?

For me the most important factor in survival is for the patient to take the lead in their healthcare and healthcare decisions. and that is what I have done over the years.

[Jeff G]

Caveyuk-
Thanks for the response. I am on Bactrim prophylaxis since my main health challenges have been respiratory in nature. I am also at present on a regimen of Truvada + Raltegrivir. These have not boosted my immune system, merely have allowed me to stay fairly steady, (with a small decrease over time in CD4 and a slight increase over time in the VL). But then what does one expect for being diagnosed for 29 years (which means an infection of 30 or 31 years probably). I have no real complaints about my health and decided long ago that I was NOT going to live for the disease but instead to live in spite of my illness.

As for meds, I have been slapped down for my approach to using meds so I hesitate to discuss my experiences since they are either ridiculed or dismissed altogether. Suffice to say that over the course of 29 years I have been on and off ARVs and yet I still have ZERO resistance to ANY medications, thus why fix a system that obviously works for me?

For me the most important factor in survival is for the patient to take the lead in their healthcare and healthcare decisions. and that is what I have done over the years.

Have you considered that maybe if you are adherent your numbers would improve ?
Im not picking on your choices but with you're not so good numbers you may really want to stop the drug holidays … A drug holiday and numbers like yours was what led me to the chemo chair and a long battle with Kaposi Sarcoma . I really am sincerely concerned so knock off saying you are being censored here … you are welcome here and I want you to know it.

[CaveyUK]

Caveyuk-
Thanks for the response. I am on Bactrim prophylaxis since my main health challenges have been respiratory in nature. I am also at present on a regimen of Truvada + Raltegrivir. These have not boosted my immune system, merely have allowed me to stay fairly steady, (with a small decrease over time in CD4 and a slight increase over time in the VL). But then what does one expect for being diagnosed for 29 years (which means an infection of 30 or 31 years probably). I have no real complaints about my health and decided long ago that I was NOT going to live for the disease but instead to live in spite of my illness.

As for meds, I have been slapped down for my approach to using meds so I hesitate to discuss my experiences since they are either ridiculed or dismissed altogether. Suffice to say that over the course of 29 years I have been on and off ARVs and yet I still have ZERO resistance to ANY medications, thus why fix a system that obviously works for me?

For me the most important factor in survival is for the patient to take the lead in their healthcare and healthcare decisions. and that is what I have done over the years.

Hi Brian

No HIV meds will boost your immune system. Thats what you own body will do when the virus is suppressed, which IS what the HIV meds do. If you are experiencing a continual increase in VL whilst being adherent to the meds, then it could indicate some form of treatment failure, so prob ask about other options.

If you have spikes in VL it could also explain your CD4's not responding and you staying in the danger zone of < 200 cells, although it's good that you are on Bactrim.

I can't speak on the drug-holiday thing as I'll defer to those more experienced, but it doesn't seem a good idea. Resistance or not...

I respect that you are a LTS and have been living with this passenger for many years, but I would hate for you to reach that milestone and then go downhill quickly due to non-adherence, so I would urge you to get onto a med that works well for you, and stick to it. Modern meds are relatively side-effect free compared to the old ones, so it kinda doesn't make sense for anyone *not* to take them.

I do agree about people making their own decisions, however making a decision to suffer a drawn-out painful death isn't one I would want to be taking!

Stay healthy