POZ Community Forums
Main Forums => Living With HIV => Topic started by: clarke on September 08, 2006, 02:52:02 pm
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Does anyone know or understand the correlation between one's CD-4 count and how their health stays?
Mine is around the 500+ mark (I believe that's half of "normal"?), and has been for several years, and my VL has been undectable for over 6 years.
Viramune, AZT, Neurontin, Elavil (25mg. at night only) and Lorazapam (2mg. at night only).
I find myself still easily catching some kind of flu/cold, that from trial and error, Levaquin seems to be the only medicine to help. Also, it seems my neuropathy is getting worse.
I have it in my feet, ankles and halfway to my knees. I've been having a lot of hassle with my left leg the last month or so. My MD did what tests she could, and also saw my left leg seems to have gotten worse as opposed to my right leg (I see a Neurologist later on this month).
My neuropathy seems really "weird" as opposed to what I've heard from other people with this. The soles of my feet cannot feel the heat from sand at the beach, but when I touch them to put on my socks, trim nails, it hurts. I've broken toes and my left ankle and not know it until I see the color of them at the end of the day. It also seems my feet are extremely sensitive to cold but not heat (although heat "feels" good but doesn't hurt). I've also got more than half a dozen warts on the my soles.
It seems though that when I see an MD when I get ill, they comment that my CD-4 count is good, and they don't understand why I get sick or why my neuropathy is getting worse.
I understood from something I read year ago, that having a "good" CD-4 count means squat. It said something that even though one may have a high CD-4 count, they aren't the same ones that the virus has and is wrecking, so they don't have the "memory" the original ones had to prevent or help the body when ill.
Anyone got an idea?
Much thanks,
clarke
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Clarke, there's no real answer to this, as the correlation of your health vs. cd4 count would be different to mine and everyone elses.
Some people do quite well on low CD4 counts, and seem to not pick up bugs, whilsts others with high CD4 counts seem to pick up everything that goes around. There really is no direct answer. On paper it all looks good that the higher CD4 counts are ideal, but in practice it's really very different.
You touched on the memory T cells in your last paragraph and yes that's true. It can take a very long time to replace cells that remembered what type of antigens they were programmed for if they were destroyed by HIV. If you lose those cells, you body will take a lot longer to fight disease than if those cells were available, as they would instantly identify what they were programed for and pump out the required antibodies. With those gone, that step doesnt occur and cells need to be reprogrammed to remember what the body has come in to contact with again.
At least that's my limited knowledge of the immune system's memory t cells action in laymans terms.
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CD4 of 300+ is basically well fuctional and sufficient, 500+ is normal (statistically normal for the US). Disease progression is correaltated with viral load and CD4 count independently, viral load under 50 good, CD4 higher = better.
PN wise, perhaps get off the AZT (and why are you only on two anti-HIV drugs? - though they seem to be doing the rick eh, which is the real test...). However, it doens not sound like typical HIV med realted neuropathy. PN can have many causes. Maybe this is related to the warts (eg a virus besides HIV causing some kind of local nerve damage).
- matt
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Hey Clarke.
You did a good job of describing neuropathy. I always have trouble making people understand how something that is supposed to be 'numb' can have so much pain associated with it....I would routinely end up with a black toenail from jamming my toes down into my shoes and not realizing it. I'm glad to say mine has gotten much better. (first developed in 1992)
Coincidentally, my left leg is also much worse than my right; worse vericose veins, worse edema, more pain....It probably all stems from me having a blood clot in that leg and the resulting DVT. It's compression hose for me these days...
Good luck! and sending you hugs and positive energy....
Alan
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CD4 of 300+ is basically well fuctional and sufficient, 500+ is normal (statistically normal for the US). Disease progression is correaltated with viral load and CD4 count independently, viral load under 50 good, CD4 higher = better.
PN wise, perhaps get off the AZT (and why are you only on two anti-HIV drugs? - though they seem to be doing the rick eh, which is the real test...). However, it doens not sound like typical HIV med realted neuropathy. PN can have many causes. Maybe this is related to the warts (eg a virus besides HIV causing some kind of local nerve damage).
- matt
Newt,
When you say that progresiion is correlated independently, what does that mean? My Uncle has a CD4 in the 140 range and currently a VL of 600 (though it was previously undetectable). He tells me he has the low CD4 count for a long time. He very recently swithced from Viread to Invirase and the dr. said the rise could be while the new meds work its way in. Whatever the VL, he seems to have very low CD4 cells. He has had pneumonia twice in the past 6 years (one PCP and 'regular').
He does seem to be getting sicker more frequently lately. Would it be logical to correlate the low CD4 with the health issues? And if so, is this what is clinically defined as 'progression'. I seem to read a lot of literature that says AIDS is defined by a CD4 count under 200 and having had one of a list of opportunistic infections (which he has had). Is this still the current guidlines? Does this mean he has AIDS?
I really appreciate all the help. I am so new at this and it is really a rollercoaster ride. One day I think he is dying, the next he seems relatively fit. Very stressful on both of us.
Thanks for everything..
Maestro
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Hey Clarke,
A CD4 of 500 is fine. You are not at risk for opportunistic infections at that level, usually. The "average" normal CD4 level is between 500-600 to about 1,000-1,100.
As for memory T-cells, which you brought up, what Matt (Cubbybeaer) said is the nuts and bolts of it. Basically, your body builds up a "database" of sorts, based on the diseases and micro-organism you have been exposed to. This allows the body to instantly begin producing the antibodies it needs whenever a familiar bug invades.
When someone's immune system becomes severely compromised, such as with AIDS, that "database" can be lost. Even when a person's CD4 recoups and rises toward more normal numbers, they still don't have those memory T-cells
They can only be rebuilt in time and after exposure to various diseses, thereby building a new database.
At least, that is how it was explained to me.
As for catching every bug that comes along even if your immune system was never severely compromised, well, that's pretty much an individual thing. As someone else mentioned, I know people who have so few CD4s they have named them after the seven dwarfs, yet they rarely become ill or catch any of the usual colds or flu.
Yet others whose immune system is normal and who are negative catch every sniffle, cold or sore throat going around.
How does this happen? You got me. It just does.
As for the PN, it could be the AZT. You say your doc is also stumped by this. I just don't know what to tell you except to commiserate with you. It is a pain.
Don't know if this helps.
HUGS,
Mark
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Hello Clark,
You bring up some interesting points. I have never had a t-cell count above 350 in the past three years, plus I really haven't been sick. (I hate making that statement, because I feel as though I will jinx myself). I haven't had any flu, or flu like symptoms over the past three years, but then again, I never really got sick that often as a kid growing up, and if I did get sick, I usually got over it pretty fast. I still get the flu shot annually, and will be getting it this year again.( Been getting the flu shot for ten years now) I have also had the pneumonia shot plus the booster. Plus the available HEP shots. And any other requires shots. ( I get these through work.)
I haven't even had a runny nose, sore throat ,cough,sinus problems, or even any kind of a bad headache these past three years.,( maybe a couple days last year), and my numbers are not that fantastic at all. Thats not to say things have been great either. I still have the issues with fatigue. Still have issues with neck pain. and some muscle/leg ache. I wouldn't mind to just get an old fashion "cold". and feel normal again. That has got to sound, like some bizarre statement ! :P
It was probably 4 months into therapy, when my neuropathy started. I remember a time in the early part of 2004, when I wished I had never purchased a car with a standard transmission. The neuropathy was at it's worst then, And pushing the clutch, brake, and gas all hurt my feet quite a bit. ( I let my partner do most of the driving back then. I didn't even want a pair of shoes on my feet !!! Old fashion flip-flops, were the most comfortable things i could wear ! Most of the time my feet feel as though they are frost-bitten.
I was at the beach a couple weeks ago( I live in Florida, where the sand gets HOT, and I also noticed, that I wasn't affected by the heat of the sand. Five years ago, I would have been running over the sand :o Also when the neuropathy was at its worse, I had to keep the hot water turned down in the shower. The hot water, seemed hotter then it was.... Go figure !!!
As my t-cells rose the neuropathy decreased. It is once again on the up swing, my shins, feel as though they have been kicked !! I am sore from the knees down, I am still walking ok, I am still capable of doing things. I can still jog.My feet are still numb,I just block the pain and discomfort out of my mind, but I also know that won't last forever. I take nothing for the neuropathy. The doctor gave me some AMITRIPTYLINE (SP), back in July, but I never started it. I am only on my HIV meds at this point, and I do take Arthritis strength Tylenol, several times a week. ( and that is only when necessary )
All this correlation between the numbers and ones health, I don't understand it. All of us are different. Why do people with t-cells in the 600's get PCP?? I never had PCP. I had bacterial pneumonia, which kicked my ass for a couple days, back around July of 03. Also had a t-cell count of 16 back then, and a starting percentage of about 5 back then ! I am just grateful everyday !!
Soooo, I just don't know ......
Anyway, Thought I would ramble a bit :-\
Take care of yourself---------Ray
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Wow! Lotta information to work over, and I sure appreciate it.
I probably shoulda mentioned that when I was diagnosed in 1994, I had ARD (AIDS Related Dementia), so I was one sick puppy. I barely knew my butt from a hole-in-the-ground. Also, if I remember correctly, the testing where I was at (Memphis) only did the CD-4 cell test (if VL's were done, I don't remember), but I was told I had "way less than 50", whatever that meant at the time.
I'm wondering if my CD-4 count is "high", the MD's think I shouldn't be getting sick? Or do they just not "get" that CD-4 counts mean zip? I mean, aren't the "new" CD-4 cells getting constantly "invaded" by the HIV anyhow? So how can a new or "updated" database be accomplished? From how I'm thinking (and I know that is very dangerous for me :D ), that is a logical way of looking at what this "bug" has done and is constantly doing despite the meds (oh, btw, my better half told me I'm taking Viramune AND Combivir). Man, short term memory suxors :D .
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Hey guy,
I'm up this am so I've been puttin my mindless 2-cents worth in some posts. Its raining out (again :( ) and I had planned on a lot of biking today.
But ANyway...
Have you ever heard of the "piano keys" explanation of cd4's??? Its said the virus takes out some of the "keys" of your immune system. Like with piano keys, it hits maybe the C and D. So when your immune system tries to play a song (fight some invaders), the some "keys" are missing.
So there are holes in the immune system that cause it to not respond to fighting off buggies as it should.
I don’t know... I have no music talent ::)
But, as to Combivir, I do believe that does or can cause the neuropathy. And that "wasting look" some get can be a problem too with Combivir (at least thats what I've been told).
I know, not much help, but there are a lot of good people here to listen when its needed. Like as they say, we're all in the same boat.
All the best and take care...
randy
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Yep, I'm missing all kinds a keys !!!Especially back in 2003. Hopefully my body"s tone deaf !!! :P sounds pretty reasonable to me...
Ray
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Awwww, you shoud have taken violin lessions back in grade school ;D
I took one lession when I was 11 yrs old on a Friday.
On the news the next Saturday night, I heard a violin teacher from a local school had dropped dead.
Yep! It was my teacher. My one lession killed him. :o
(true story - with no point, naturally)