new numbers. not so good

[tendai]

my CD4's gone down to 109 from 389. doctor's made me have liver function tests and full blood count so we can start on ARVs.  timing's perfect, just about to get into a relationship, now i cant think of it.  she my doc, says i have to go for counselling to psyche myself up for the meds.  i am not sick at all. i last had diarrhaoea in December. nothing at all since then. almost had a cold but i took antibiotics and it didnt get far.  i feel fine. do i really need them, do u think? i mean i do need them but i wish i didnt. i truly wish to GOd i didnt.

[keyite]

How long between the two tests? If it is only about three months or so then this seems a huge drop and makes you wonder if it's not a blip or lab mistake. I would get another CD4 count to be sure before going on meds. It's a big step!

[Central79]

Yep - how big was the gap inbetween tests? And what are the CD4 percentages?

This is a big drop, and not likely to all be down to the natural variability of your body. It means that even if some of the drop was due to CD4s moving into lymph nodes on your latest tests, that you're most likely in the range where you should be on meds.

I haven't started taking meds yet, so I can only wish you the best in getting your head around starting. When I consider it, I find it very hard to get my head around. But I do think you need to start from the numbers point of view.

All the best, Matt.

[AustinWesley]

my CD4's gone down to 109 from 389. doctor's made me have liver function tests and full blood count so we can start on ARVs.  timing's perfect, just about to get into a relationship, now i cant think of it.  she my doc, says i have to go for counselling to psyche myself up for the meds.  i am not sick at all. i last had diarrhaoea in December. nothing at all since then. almost had a cold but i took antibiotics and it didnt get far.  i feel fine. do i really need them, do u think? i mean i do need them but i wish i didnt. i truly wish to GOd i didnt.

Hey Tendai,

This happened to me a couple months ago and it scared the living crap out of me.  I had a retest and well it bounced back up so I feel mine was likely a lab error.

As the others asked, how many labs have you had and when are the dates of those?   

The decision to start meds is scary for most everyone, but I've been on them for a month and no problems at all.   Definitely, you need to be prepared before you start because you want to be able to adhere to them properly so they can do their job.

It's good they did do the liver function tests as well.   

Wesley

[SASA39]

For that reason I was insisting on polling such a question with many varieties so that we could have a much more perspective...........................

[tendai]

i had been having CD4 checks every six months but in December i dropped from 503 in June to 389 in December then my doctor said to wait three months so my March count was 109.  they dont do any percentage tests the results just came back with CD4 and CD3 and both were very low.
May 2005 - 540
Dec 2005 -  478
June 2006 - 503
Dec 2006 -  389
March 2007 - 109
i'll ask my doctor if i can get retested just to be sure. thanks a lot..

[Matty the Damned]

Tendai,

An strangely similar thing happened to me last year. In January my CD4's were in the mid 500's, by June they'd dropped to the 300's. By the end of August I was in the low 200's, two weeks later they were in the low 100's. My percentages plunged along with them.

By November (when I restarted medications) my CD4's had reached 15 in part because I had to take steroids to treat an auto-immune disorder.

All the while my VL danced merrily higher.

Do get retested and see if you can have your percentages tested too.

MtD

[koi1]

The meds can be daunting, but once you start them and your health improves, you will feel better. Though starting meds can be a psychological and physical issue, they are there to help you live a longer, healthier life.  It helps to see them as a step along the way, rather than a negative. Of course when I started them, I was in worse shape than you so I saw progress just days after taking them. I also believe that the less damage your body's systems get the better. My digestive system suffered and I still have not recovered from that. I think it is better to start meds when you still have your health, but just need to shore up your immune system against this virus. Best wishes with yoru meds.

rob

[stratosphere]

For whatever reason it is fairly common for CD4 counts to jump around,  and its always scary when they are less then they were last time.  Overall numbers like % and VL help complete the picture.  But i agree with others in that i would re-test soon if i were you and if the numbers haven't improved i would strongly consider starting meds.  When i was firs diagnosed my ID told me that generally patients start meds when their CD4 is below 350 and im not sure what the number was for the VL.  I could have waited but i have been on meds for 2 years now so whats done is done.  Im glad i did it when i did.  Hang in there you will be alright,  but please do go and get another set of labs to see what they reveal. 

[tigger2376]

I'll go with everyone else on this. your CD4 can 'blip' for all sorts of strange reasons, so a retest in a month or so may be an idea. I know its hard,but try not to worry, stress can affect your numbers too. I've been on meds now since last Sept and although its not easy at first, the sheer satisfaction of feeling that your'e doing something constructive can really help.
Good luck if you do go for another test, and please let us know
Thinking of u
jo
x

[tendai]

i went for couselling and the lady advised me that its best i start as soon as possible so that i'm not vulnerable to any OI's that may decide to prey on me. its almost winter here and i shudder to think of catching pneumonia and landing in hospital. doc says my liver is fine and good to go....thanks a lot guys . i will keep you posted.

[Ihavehope]

you'll do great on meds Tendai, just keep a positive outlook on it and don't let the side-effects warnings overpower your mind.

AL

(who wishes you the best)

[zeb]

Hi all,

I see often folks around here which numbers go down rapidly.
According to what my doc told and literature i read that the median time between infection and getting AIDS is 10 (to 15) years.
I'm really surprised to see folks here who are on meds within 2 years after infection.

Zeb

[Ihavehope]

Hey Zeb

I got AIDS diagnosis in less than 2 years. I don't know why and neither does my doc. All he said was that people experience HIV differently and my body was not fighting the virus very well.

AL

(who is worried that his body is deterioting quicker than the average person infected with HIV)

[tendai]

Al i think i have the same problem coz according to my layman's calculations i must have been infected in 2003 and i think my virus has been gobbling up my t-cells quite greedily all this while. 

meanwhile i have been preparing myself .  i've decided on 8.30 as the best time to take my meds as i will definitely be awake by then in the morning and thats the time i usually go to be at night. my doctor and my boss are dithering about the cost of it all and want me to go the public clinics to get (almost)free meds rather than buy them from pharmacies so goodness knows when i will be able to join the thousands on the waiting list and then finally get the drugs. i have medical aid which covers meds so i dont know why they are insisting i go the OI clinics if it takes so long to get started. or maybe they know something i dont know..

[AustinWesley]

Hey Tendai,

I am not buying this business that those of us who have had faster drops in Tcells are the minority.   It certainly isn't very encouraging when some act as if we are doing something wrong or ought to be able to go for years and years.

I'll tell ya one thing.   It's all a big numbers game as far as I'm concerned now.   I know people not on meds and others with way high counts that aren't doing well.   

I agree with what Rob said.  I think it's best to start meds when you are ready and prepared while you still have your health.  It seems like you've kept track of things fairly well also.   I believe a lot of people just have no idea where they stand.

Maybe I was over concerned, but I'd rather be on top of things rather than wait till I ended up seriously ill or in the hospital.  I have more than a couple friends who have waited to start meds (too long in my opinion) who have had multiple hospitalizations etc. but they're counts are still considered within the range of no meds.

Anyways, depending on what they prescribe for you it may be that you should take it at night on an empty stomach.   That's how mine is.  I know there are different options though.

Keep proactive and if need be call these facilities yourself to make certain everything is in place.   I am insured, but I've always been worried about losing it.  My doctor advised me to go ahead and pre register at the local HIV clinic so in case that ever happened (God Forbid) then they will have the bulk of the red tape out of the way even though I'm not going there.

I feel a LOT better since being on the meds and I can totally relate to your scare.   It would be helpful if a retest can be done, but from your history I bet your gona do great with no complications.

Hang in there!

Wesley

[Life]

Tendai....   I would start posting your % and vl along with your cd4 counts.... It gives a clearer picture to the gang here on whats goin on..  You really cant define where you are just off of cd counts... They are a bouncy lot...

If your confirmatory tests come back and reflect the last cd4 count, you should go on meds... You want to remain healthy and not have to fight some other fucking thing...   Dont over dramatize the idea of meds.... Its highly overrated for most..

Hugs,

Eric

[tendai]

Guys i dont believe it. I had a retest like you guys suggested and the darn counts gone up again to 324 from 109 last month. My doctor doesnt know them yet coz i phoned in for them this morning and i hadnt told her or my boss that i was retesting. so before i get too excited at the thought of not having to start meds, do you think this is a blip?  i will show them the results when the slip comes in and i hope they say i can hold off on meds. what do u think. and i have to say thank you for the advice to retest thank you so much coz meds here are so expensive its almost half my salary

[Matty the Damned]

Guys i dont believe it. I had a retest like you guys suggested and the darn counts gone up again to 324 from 109 last month. My doctor doesnt know them yet coz i phoned in for them this morning and i hadnt told her or my boss that i was retesting. so before i get too excited at the thought of not having to start meds, do you think this is a blip?  i will show them the results when the slip comes in and i hope they say i can hold off on meds. what do u think. and i have to say thank you for the advice to retest thank you so much coz meds here are so expensive its almost half my salary

Tendai,

It does indeed seem like a blip. However, do you know what your CD4 percentage is? You see the absolute number (what you've quoted here) does have a tendency to bounce around a lot, whereas the percentage tends to fluctuate much less. As a result the percentage gives a better picture over time of what's happening with disease progression.

Whilst a drop down to 109 is concerning, it would be much easier to understand what's going on with the percentage result to guide us.

Nevertheless I'm pleased that your absolute number has increased.

Kindest regards,

MtD

[tendai]

there wasnt a percentage on my results slip. there never has been ever since i started testing.  there's just this
CD4: 324
CD8; 1896
cd3: 2226
cd4:cD8 RATIO: 0.17
and that is all on the slip nothing else.

[milker]

hi Tendai,

try to call the labs and ask for the percentages, they should have them

Milker.

[northernguy]

Guys i dont believe it. I had a retest like you guys suggested and the darn counts gone up again to 324 from 109 last month. My doctor doesnt know them yet coz i phoned in for them this morning and i hadnt told her or my boss that i was retesting. so before i get too excited at the thought of not having to start meds, do you think this is a blip?

Nice to see the #'s go up, but you might want to keep in mind that recent studies seems to indicate that starting HAART at higher numbers is better than waiting until your numbers drop too low.  After all the long term goal is trying to ensure that your life is extended, and that the quality of that life is good.

Man, I'm waiting for that day when the meds don't have side-effects that scare  us from using them, will it ever come?!  And that they don't bankrupt some people

[Moffie65]

Hi Tendai,

I realize that many of us have given you advise, and yet few of us know of how things are in your corner of the world in South Africa.  That being said, I totally agree with Northernguy above, and I highly recommend that you think really hard about actually starting medications earlier, rather than later.  If in fact your CD4s dropped to 109, it tells me that your body is struggling and your immune system is not having a very good time with the virus.

The medications will help you, and should not be something to be feared.  I had no choice when I started as I was so very near death and so far into my infection, that there was little doubt that I should start meds.  Now, 13 years later, I can say that it has been far better to have the good health  AND the side effects, rather than the alternative. 

Please think very hard about starting the meds, because in the end, they are your friend, and not to be feared.  I know that many of us here talk about how the medications really tear us up, but please be aware that none of us who have been on medications for some time, would even be here, if not for this magic elixer. 

Please start to ready your mind and heart for taking these medications.  I know above in this thread that you stated that "I am not sick, nor have I felt ill in any way", and that is really good, but if you wait until you are sick; often times it is too late and the damage to your immune system is going to be much more devastating than if you didn't wait until you are very ill.

Thank you, and please take care of yourself.

Love,

[tendai]

i called the lab and they gave me the percentages. now they tel me they only include them on the results only if specially requested.
anyway for
26 March 07  CD4 109    CD4%- 8.20%        CD3 - 38.5%
26 April  07   CD4 324    CD4% - 7.0%        CD3 - 40.5%
do i need all of the previous ones? i might have to get my doctor to request for them specially. the lab guys really gave me a hard time.
so do i panic now? they seem rather low to me

[Moffie65]

Tendai,

A low percentage is like mine, and hovers around 12 to 16%.  Your percentage numbers tell that your system is responding well, and you should not have to think about medications just yet.  However, watch that number and if it starts to dip lower into the 20 range then we are looking at medications.  As long as the % is up, you shouldn't have too many problems raising the CD4 number.  I recommend doing so through diet, exercise and proper sleep.  Sleep is the one thing that may impact our CD4s before starting medications, so just take care of yourself really well.

Love,

[tendai]

to be honest, i'm confused now. i thought that 7% is way too low? coz i read in the lessons that if it goes below 13% its too low..or i didnt understand?

[Moffie65]

I am sorry Tendai, I was reading the % numbers which you posted for CD3 which is not tracked here so much.

YES! your percentage of 7 is way too low, and I completely reverse my advise of the above post.  I was reading this at 3am, so please forgive.

Yes, I wouldn't wait too long to start medications, due to the low of 7% in your CD4 measurement.  This number will definately cause problems and blips can become very unstable at that point.

I wouldn't wait to start medications now, because the longer you wait, the easier it will be to get some Opportunistic Infections, and also will damage your immune system even more. 

You have to come to some peace about the medications, but let me tell you, the alternative for waiting is not pretty.

Love,

[milker]

Do you know your VL?

The CD4 and CD3 percentages are too low, the CD4/CD8 ration is good.

Milker.

[tendai]

they definitely dont do viral load tests until u're on meds and they want to monitor your progress. u know what? i'm going to the doctor first thing on monday and ask her for a presciption. i'll try the free clinics first but just have the presciption handy so i can just go to a pharmacy and use my medical aid if the clinics cant get me started soon enough. 

thanks a lot guys. i had hoped i wouldnt have to start damn meds but i dont have a choice do i? thanks for all the advice and support, u're the best.

[budndallastx]

I dreaded starting the meds but in the end my fear of the meds was worse than actually taking the pills.   As Moffie indicated, the alternative (no-meds) is by far a worse and very problematic option.

[tendai]

i went back to my doctor and told her about the percentage thing and she said as far as she had known the percentage is only used on paeds.  so she's referred me to a guy who's supposed to be a specialist. but i can only go see him next week. i'm kind of starting to panic here. every twinge i feel in body i think "here we go with the OIs"

[milker]

I see that you are in Zimbabwe is it possible that you do not have the same type of virus that we commonly have in Europe or USA, and that the interpretation of numbers for the African type is different? Your doctor doesn't seem concerned about your percentage, so that must be good?

Keep us informed,

Milker.

[tendai]

i dont know about that.  i'll ask the specialist guy when i see him. but that will be on tuesday afternoon. it might be possible. maybe thats why we africans drop like flies when it comes to AIDS

[tendai]

just an update. i went to see the specialist and he took another CD4 count and a chest x-ray. the CD4 to get an average and the x-ray to see if there's any signs of TB or anyting b4 prescribing drugs.  the CD4 came back and it was 325 so he said i can hold off on meds for another three months and if i go below 250 then i can start.  once again "no need for a CD4% we only use that on children". i'm relieved of course, anything to delay meds.

[sweetasmeli]

just an update. i went to see the specialist and he took another CD4 count and a chest x-ray. the CD4 to get an average and the x-ray to see if there's any signs of TB or anyting b4 prescribing drugs.  the CD4 came back and it was 325 so he said i can hold off on meds for another three months and if i go below 250 then i can start.  once again "no need for a CD4% we only use that on children". i'm relieved of course, anything to delay meds.

Tendai, I'm confused.
Although your CD4 absolute is ok at 325, my understanding is it's the % that is more important.

26 March 07  CD4 109    CD4%- 8.20%        CD3 - 38.5%
26 April  07   CD4 324    CD4% - 7.0%        CD3 - 40.5%

If the above results are your % from March/April, I don't understand 1) Why you're not being considered for meds and 2) What your doctor means by "no need for a CD4% we only use that on children".

Can anyone else help here?

Melia

[Ann]

Hi Tendai,

The doctor should be able to give you the percentage, regardless of whether or not they "only" use it for children. Read the following, taken from the Blood Tests Lessons:

By the way, T4 is another way of saying CD4.

What is the T4 Percentage?

If you look at your lab report, you will also see something called your CD4+ percentage (%). This is an important number for you and your doctor to know. In healthy adults, the number of T4 cells make up between 32% and 68% of the total number of lymphocytes – a large group of white blood cells that include T4 cells, T8 cells (see below), and B-cells. In fact, the lab uses the T4 percentage to determine the number of T4 cells in a sample of blood.

The T4 percentage is sometimes a more reliable measurement than the T4 count because it tends to vary less between measurements. For example, one person's T4 count may vary between 200 and 300 over a several month period while their T4 percentage remains constant at, say, 21%. Provided that the T4 percentage stays at 21% or higher, the immune system still appears to be functioning properly, regardless of what the T4 count is. At the same time, a T4 percentage at or below 13% – regardless of what the actual T4 count is – usually means that the immune system is damaged and that it is time to begin prophylactic treatment (drugs to prevent diseases) for opportunistic infections like PCP.

As the lab will use the percentage to calculate the absolute, your doctor should have access to your percentage. If I were you, I'd press the issue with the doctor, especially in light of your previous percentages.

Hang in there hun, keep us posted.

Hugs,
Ann
xxx