I'm a bit confused. Maybe someone can help

[Dale Parker]

I have two questions maybe someone can answer:
1) From what I read CD4 counts normally should be 500 to 1200.  If HIV is untreated (no meds) on average they drop 50 a year.  Say I had 800 CD4's (middle ground) to start with.  My CD4's are 21. This would mean that I was infected about 14 to 15 years ago).  Most people who contribute on here seem to have had to be hospitalized at CD4 counts of 250 to 160.  For me the 250 mark would have been 4 to 5 years ago.  Physically I'm normal not over weight nor am I that muscular.  I get a fair bit of exercise in the summer but I tend to hibernate like a bear in the winter.  I smoke a pack a day, used to eat one good meal a day and drank a lot of Coke.  I don't do drugs, drink, or snack much.  I also tend to ignore aches and pains rather than run to the doctors, although I'm changing that.
  The law of averages says that I should have been seriously ill between 4 or 6 times.  Any ideas or suggestions as to why I haven't?  I spend a great deal of time thinking about this.  On a health scale of 1 to 10 I usually figure I'm a 15 (maybe a 12 on a bad day).

2)  Why is the first year after starting meds at my age the most dangerous?  I was never sick before starting the drugs, except for the skin problems and thrush.  The drugs are supposed to boost the immune system (slowly but surely) and I'm on drugs to prevent opportunistic infections.  Reason says that these threats should be getting less and less starting from the first pill.  The threats should decrease even more so the longer I'm on the drugs.  Does starting the drugs initially reduce the CD4 count before starting to build it up?
Any thoughts would be greatly appreciated. 

[Ann]

Hi Dale, welcome to the forums.

Not everyone's virus conforms to the idea that you will drop 50 CD4 cells per year. Some people's CD4s go up and down and up and down, some people don't progress much at all, and some people progress quite quickly. Nobody really knows why this is, all we can say with any truthfulness is a very broad "everyone's body deals with this virus differently".

You may have been infected for years and years, but it is also not outside the realm of possibility that it's only been say, five or so. If you never tested regularly in the past two decades, you really have no way of nailing it down. To be honest, it's not worth the energy spent on worrying about it. The important thing is that you know now and you're under a doctor's care.

You're not terribly unusual in having pretty poor numbers, but yet having a good level of overall health. Looking at your previous posts, you were getting some indications that something wasn't right and if you'd ignored that, you might have ended up in hospital sometime this year with PCP. (but you won't now, because you're taking charge of your virus and your health) I've lost count of the times we've had members here saying they felt totally fine and healthy, never sick, until one day they collapsed with PCP and found out they had similar numbers to yours. So no, what you're experiencing is not unusual.


As for the first year on meds being more dangerous, I don't think it has anything to do with your AGE, rather it has to do with your NUMBERS. Sometimes when a person starts on the meds with very poor numbers, they experience what's called "immune reconstitution syndrome". It's when your immune system starts dealing with all sorts of underlying bugs and viruses you may be harbouring, but your system was previously too weak to deal with.

Here are some links on immune reconstitution syndrome:

http://www.aidsmap.com/en/news/DE0552B2-38A9-432C-AC09-427C9D55ECF2.asp

http://www.aidsmap.com/en/news/EEAB386A-173A-40C2-B1CB-BCB4740FEFF6.asp

http://www.thebody.com/content/art2525.html

And please, try not to worry too much about the possibility of you getting this syndrome. While it's "dangerous" in terms of being ill or feeling unwell, it's only life-threatening in very extreme cases.

Hang in there Dale, you're going to be ok.

Ann

[Assurbanipal]

Hi Dale

Many of us late diagnosed types felt great until we got really sick.  In part, that is because a lot of "feeling sick" is fever and inflammation; these are signs that your immune system is fighting off a bug, rather than the direct experience of the bug itself.   So when your immune system stopped fighting it may have felt like you were healthy, but really that is just because surrender feels easy.

As far as why the first year is more dangerous, that is when your immune system is most damaged.  Sometimes it can take a while to find a drug regimen that works against your virus and that you can tolerate.  And even once you are on an effective set of drugs and HIV stops killing your tcells it will take time for them to recover.  During that period you are at risk for a variety of opportunistic infections.  Finally, once your immune system is back on the job, many of those bugs you surrendered to before are there to be fought -- the immune reconstitution issue Ann referred to.

Odds are that you will do just fine.  But, for the first year or so, it wouldn't hurt for you to help the odds by being a little more careful than usual.

Regards
A

[Dale Parker]

Thanks for the great advise.  I wasn't really worried but they were things that made me go "HMMMMMMMM".  Friends who have had exposure to HIV /Aids (although it was limited to their friends) are just as confused as I was.  I'll show them your responces and put their minds at ease.   
  If I had been tested regularly (my last test was about 20 years ago) I would have let these I fooled around with and urged getting tested just in case they didn't know their status.  Laying blame would not have been my intention.  I did have a few guys to tell and their tests were negative.  Thank God.  Although I always played safe it must have been the wrong guy at the wrong time. Like they say "Sometimes bad things happen to good people.".
Both of you deserve a big hug. 
Many Thanks
Dale

[J.R.E.]

Hello Dale,

I am not sure whether this will answer any of your questions, but just wanted to make a few comments.

I am 57 years of age. I had my aids diagnosis in 2003. At that time I had 16 t-cells and a viral load of 500,000 plus. Percentage was around 5 %.


I also tested positive in 1985. In 1999, my t-cells were in the 900 range. So, between 1999 and 2003 my health drastically changed, and the t-cells went from 900 to 16. I was never on medication.

I also never felt gravely ill, until around July of 2003. Thats when I had developed esophageal thrush. After that I had pneumonia, and hospitalised for one day.

However, my biggest concern, for at least two years leading up to starting meds in October of 2003, was the fatigue that I was dealing with. I kept blaming it on the fact that I worked the graveyard shift, but in reality, I knew what it really was. I was in such a denial stage back then, and made some very bad decisions, or none at all.


Anyway, I started on meds in October of 2003. There were some minor issues with immune reconstitution syndrome. None ( for me) led to anything serious).


Also speaking for myself, there were some anxiety issues, and some hyperactivity, and concentration issues after starting on meds.  I remember one time, just about a week after starting on meds, that my partner and I were leaving the house and going out to lunch.

 I don't know what the hell came over me, but we were less than 300 feet, down the street, I told him to stop the car. I yelled "stop; the car" Told him I had to get back to the house. Where I felt safe. I was actually shaking. I had no idea what brought this little episode on, but it only happened that one time. I just could not be confined to that car for some reason.


My immune system was obviously quite damaged back in 2003. I had this incredible surge of energy after starting on meds, and of course, all the weight I had lost ( 30 pounds worth) came back on quite fast) I had an appetite that never ceased !

As of this coming October, I will be on meds 6 years. And on the same regimen. The only thing that changed, was I was on Zerit for about a month, when I first started, and that was switched for Abacavir. Later on, the epivir and abacavir, were taken in Epzicom.

When I look back at 2003, and my health back then, I certainly didn't think I would be around 6 years later. I think my first year was more of needless worry than anything else.

 My signature line under my post has my current numbers, I am still waiting for my last blood test results, from almost two weeks. ( I haven't checked the mailbox yet-there probably in the now.)


You will remain on the prophylaxis ( anti-biotics,) until your t-cells get 200 or above, and show that they will stay there. In the beginning , I was prednisone ( for about 14 days) , Zithromax, and Dapsone. all this plus the Anti-virals.


Take care/ wishing you the best--------Ray

[Dale Parker]

Thanks for the reply Ray:
I'm very glad that you wrote in.  I think that you have answered a large piece of my puzzle.  I checked your numbers out and they are amazing.  I've been asking and checking around to see what level my CD4's and load numbers could get to but couldn't get a straight answer.  I'm very glad to know that the CD4's could get into the 300's and the load to less than 50 from my levels.  Even if it takes a while I think that at your levels I will feel a lot safer.  Hopefully I will follow in your foot steps.
    When I got laid off in September of last year I was 177 lbs.  I'm only 5'8"  average build so I could stand to loose a few pounds.  My diet changed for the better and I dropped and held at 147 which for me was comfortable.  In early March of this year I dropped to 131 lbs in about a week.  I had thrush for a few months and finally my new doctor put me on Fluconazole.  I finished the script yesterday.  The thrush seems to be gone but I will have Doc check on Wed when I see him.  My appetite has come back in the last 4 or 5 days but my weight has not started to increase yet.  I'm sure that it will increase soon.  I was getting to the point where I was thinking I need to buy smaller pants.  I've had to stop going commando as every 4 or 5 steps my pants are down around my knees.  Wearing a belt makes me look like a dodgy old man.   I am desperately in need of some ass fat.  It hurts when I sit on the thinly padded subway seats.  I don't dare get on my bike at the moment. 
  Today is my tenth day on the Truvada and Kaletra.  I thought that the Truvada was making me tired when I took it in the morning so I moved it to night time.  I take 5 Azithromycins every Sunday night and find it gives me the runs the first time I go to the bathroom.   Once with the night time dose of Kaletra and Truvada I did throw up an hour after taking them together.  Now I take the Truvada and Kaletra earlier in the evening so they get into my system prior to having the runs.  Seems to work fine. 
Thanks again for putting my mind at ease.
Wishing you the very best of luck and health
Dale

[Ann]

Dale, there's no reason to believe your CD4s won't start going up now that you're on meds. One word of caution - you may need to be patient. When starting off with a low number, it can take some time to get them up to better levels. Once you're over 200 consistently, you'll be able to quit taking the Azithromycin - and I bet that will please you!

You made me chuckle over your commando comments. Although I never go commando myself, I surely can relate to having no ass fat and how painful that can be. I lost my ass when I was on hep C treatment - but it came back, thankfully NOT with a vengeance!

Ann
(who has a bit of a belly, but the ass is fine!)

[J.R.E.]

  I had thrush for a few months and finally my new doctor put me on Fluconazole.  I finished the script yesterday.  The thrush seems to be gone but I will have Doc check on Wed when I see him. 
Wishing you the very best of luck and health
Dale

Make sure to have your Doc, check closely for the thrush. Possible take a swab. It can sometimes be very stubborn to get rid off. I think when I had it, I was on Diflucan for about two months ( it's hard to remember back then, but I do have it all logged down somewhere !


Take care----Ray

[Ann]

Make sure to have your Doc, check closely for the thrush. Possible take a swab.

Very good advice.

If you had/have oral and/or esophageal thrush, eating plain, live-bio (aka live culture) yogurt can help get rid (along with the Diflucan) and it can also help keep it from coming back. Bio-live yogurt is great stuff for pozzies.

Ann

[J.R.E.]

Very good advice.

 Bio-live yogurt is great stuff for pozzies.

Ann

I have it everyday. Never had a return of thrush since first getting back in 2003 !! You should try some of that Dale, on a regular basis. Make sure it has a "Probiotic " rating.


Ray

[Ann]

Make sure it has a "Probiotic " rating.

Thanks, Ray! I couldn't for the life of me remember the other term you see used for live-culture yogurt. 

Ann
(having a brain-fart)

[Dale Parker]

Hi Ann:
I'm hoping that when I get some ass fat back I end up with a bubble butt (never had one before but I can only dream) with the dimples on the sides.  Those kinds of butts make me drule like crazy.

Hey Ray:
I love the peaches and cream and strawberry and cream yogurt but only the Astro brand.  I tried mixing the Astro with balkan and other types and brands.  I was hoping that I could slowly get used to it but it didn't work.   I guess I will have to keep on trying with the probiotic ones. 
Take care
Dale

[pozniceguy]

Dale , I hate to sound like a wet blanket but I lost all of my butt about 10 years ago..practically none has come back....using some exercises at the gym aimed at the muscles in that area .a little shape has returned but still essentially  "no butt"   ...really a nuisance when buying/ trying pants...all seems to fall down...

Nick

[J.R.E.]

Dale,
 
Try the Danactive :

http://www.danactive.com/


Also the Activia :

http://www.activia.us.com/


http://www.activia.us.com/what.asp


These are pretty good tasting. Both products also come in light. ( with less sugar).  I like the Danactive the best !! Danactive in the morning , activia at night.


Ray

[Dale Parker]

Thanks for the links Ray.  I will check them out.

Hi Nick:
The bubble butt I want is a pipe dream of course.   I may have to buy those special undies that have butt padding built in.   Being my age I can't go around with 4 inches of boxers showing and pants that only go half way up my ass like the young ones do. LOL