My very first results!

[DanMo]

Just got back from the clinic... Wow! That took forever! The NP was running late with her patients and she couldn't find my results. The main Health Department clinic never forwarded them to the HIV specific clinic. So that was like almost 40 minutes waiting. But anywhoo!

CD4: 355 / 21%

VL: 180K

All my other stuff like triglycerides, cholesterol, liver, kidneys, glucose, etc. were normal

Tested negative for all three Heps and syphillis.

She went ahead and ordered another VL & CD4 test for me and a genotype and resistance test as well. (Which let me tell you! I thought would have been ordered with the first set of blood tests! Does this seem backwards only to me?? You have a NEW patient and you KNOW they will need meds sometime in the future... why not do a resistance test the very first time around?? Is that asking for too much common sense here?) *sigh* Now I have to wait another month to find out if I'm resistant to any meds.

Hopefully my next labs will show an improvement in my numbers. When she saw my CD4 she pointed to a poster which said something about starting meds once you fall below 500. 

What do you guys think of my numbers?

[buginme2]

Glad to hear it went well.  Your numbers are not bad.  Getting another set of numbers in a month is appropriate to get a baseline.  If your numbers stay where they are now you will be starting medication sometime in the near future.

No it is not out of the ordinary for them not to get a resistance test with your first blood draw.  First off it is a very expensive blood test (over a thousand dollars) and you need to have a minimum viral load of at least a thousand to have the test.  There is no sense in ordering the test until you confirm the viral load is sufficient especially given the cost. 

You may be feeling a bit anxious about why things seem to be taking so long before they put you on medication.  I know those first few months for me waiting to be given the go ahead to start meds was stressful.  It sounds like your NP knows her stuff.  Glad to hear it went well!

[Matty the Damned]

I think numbers are about trends over time so you'll want to see some more before a judgment can be made.

A percentage of 21% is concerning. At the top end of the "something must be done" range.

Getting resistance profiles? Good idea.

I see treatment commencing in the near future.

MtD

[DanMo]

Wow, are my numbers really that bad?

She ordered another VL and CD4 test for me... let's just hope that the numbers improve.

I'm going to Europe May 3 (this upcoming Tuesday). I'm going to stay a whole month. Should I be worried about being away from home so long? My doc advised me that if I could, to stay... but she didn't really give me a reason and then kinda back tracked and said I should go any way, just not to eat raw meats, pasteurized cheeses and to wash my hands often... I'm gonna make her explain herself more on Monday during the physical. What do you guys think?

[buginme2]

Your numbers do not indicate that you are going to drop in the next 30 days.  Have fun in Europe.  Besides, even if something were to happen the medical care in Europe is excellent so I wouldnt worry.

I think washing your hands and not eating raw meat pretty universal.  I wouldnt worry.

[Matty the Damned]

Wow, are my numbers really that bad?

She ordered another VL and CD4 test for me... let's just hope that the numbers improve.

I'm going to Europe May 3 (this upcoming Tuesday). I'm going to stay a whole month. Should I be worried about being away from home so long? My doc advised me that if I could, to stay... but she didn't really give me a reason and then kinda back tracked and said I should go any way, just not to eat raw meats, pasteurized cheeses and to wash my hands often... I'm gonna make her explain herself more on Monday during the physical. What do you guys think?

I didn't say your numbers were "that bad". I just noted that a percentage of 21 is something to keep your eye on. It could be that your percentage jumps back up again. If it continues on a downward trend (is consistently at or below 21%) then treatment is something to consider sooner rather than later.

Trends over time, kiddo. Have a nice holiday.

MtD

[skeebo1969]

    Your doctor will probably advise accordingly based off these next lab results.  While it might not necessarily be time to start meds, you might want to start preparing mentally for it. 

[Rev. Moon]

The guys have given you wise advise.  Definitely keep an eye on that percentage; it is not awful, but depending on where it trends over your next set of labs it may indicate that you need to start meds.  Don't freak out, I started at 12% when I first got diagnosed (not surprisingly as I was diagnosed during sero-conversion) and nowadays I'm in the 40s. 

In the meantime, go on holiday and enjoy Europe

[DanMo]

Hey guys... yeah I think I'm over reacting. Up until today, it's all been hypothetical... now I have actual proof of what's waging on in my body and its scary that my body might be losing and not putting up a fight. But I do understand that it's based on trends.

Those were the results of April 5 (3 weeks ago). And I believe I was just recently infected. So maybe when I got that blood drawn, my numbers were starting to improve? I dunno. Just thinking out loud.

Also, I've been getting my blood drawn around 3:30 - 4:00 pm. Isn't it true that the CD4 is usually low in the afternoons and high in the mornings? Or something like that?

I'm definitely going to enjoy Europe!  (Why do doctors always have to give people doubts!)

[drewm]

Dan, your numbers aren't that bad. Of course, this is all subjective as you are dealing with your first set of labs. When I was first dxd, I had to avoid the foods, pay closer attention to hand washing and so on. Don't worry bro, this stuff is the new normal!

Hang in there! Keep us posted! 

[tednlou2]

My percentage jumps back and forth from around 21% to 26%.  It was 25% last week.  Like everyone said, I would just follow the trend.  I had decided if mine stayed around 20% or dropped to 19%, I would probably go ahead and start meds regardless of having a CD4 in the 600-800 range. 

Perhaps they didn't order a genotype on the first labs, because it is possible you could have had a very low viral load where the genotype would have been a waste of money??  I'm trying to remember your situation---you were recently infected and not just recently diagnosed? 

[aztecan]

Interesting that everyone is jumping on the percentage.

I would be more concerned with a viral load of 180K.

As our Matty said, it is the trend that matters. When you can look at multiple tests and see where things appear to be heading, it will be easier to chart a course.

Enjoy your birthday!

HUGS,

Mark

[drewm]

Interesting that everyone is jumping on the percentage.

I would be more concerned with a viral load of 180K.

As our Matty said, it is the trend that matters. When you can look at multiple tests and see where things appear to be heading, it will be easier to chart a colurse.

Enjoy your birthday!

HUGS,

Mark

Mark and I have the same school of thought. It's the VL that sticks out. That being said, its the trend that is more indicative of disease progression, not, necessarily a single set of labs.

[eric48]

.... once you fall below 500. ....

You only have one lab, so far...

some people would prefer to look at the trend before making a life time commitment to meds.

When you were infected (if you know...) , your age, your insurrance coverage, there are a good number of factors in the decision equation.

studying carefully which meds, etc. is worthwhile and costless. Then get ready to jump.

Your numbers suggest me that there is no hurry.

I am not exactly in your shoes (mine was CD4 : 450, CD% 16, VL 60k) but not that far.

As I was considering my numbers and other (own) data (age...), I asked my doctor:

Is there any benefit in postponing the meds ?

The meds are not that bad. If you are younger, it means a real long life with meds (eventhough a youger person might see a cure). If you are older, there is less lifetime ahead, and bear in mind that it may take more time to adjust to medication as you get older

Is there any benefit in postponing the meds ?

I think this is the proper question to ask doc or yourself. (the answer may depend on your specifics)

And once you have answered this question, things get pretty clear, I guess

Cheers

Eric

[eric48]

To make things simple, the VL is the number of virus DNA released by CD4s as they die.

free virus DNAs have a very short life time... 180 K would qualify as high.

A cleaner in a zoo or similar cleans the rabbit cage for rabbit 'shit' (droppings) everyday.
the person in charge of the rabbits takes the rabbits away (for a walk...) and asks the cleaner in.
the cleaner never sees the rabbits.

the cleaner only sees what was 'left' the last 24 hours
if the cleaner sees a lot of ... it is either because there are a lot of rabbit or the rabbits eat too much.

a high VL is a combination of a high turnover in CD4 (a lot of CD4 die per day) and a high replication within the cells.

If you have been recently infected, then it can be expected to see a high VL as a 'normal' course of infection and you 'may'
want to hope that your body may be able to 'control'

if you have remained under infection for a while already, I doubt that a high turnover in CD4 cells and a high replication points to 'control'.
It rather shows, out of control.

if you have been infected recently a high VL is ... expected (normal ?)
if you have not been infected recently a high VL is ... high. (out of control ?)

hope this helps

Eric
 

[DanMo]

Hey Eric!

That rabbit illustration was very funny!

I'm very sure that I was infected in December 2010... does that count as a recent infection? I have heard that at the very beginning the VL is usually in the millions. So, in a couple of months, my body could have been working to get it down to 180K.

I just got another CD4 / VL labs drawn yesterday. I'm told I'll have the results like in 2 weeks.

[SunnyFlorida]

Hey Eric!

That rabbit illustration was very funny!

I'm very sure that I was infected in December 2010... does that count as a recent infection? I have heard that at the very beginning the VL is usually in the millions. So, in a couple of months, my body could have been working to get it down to 180K.

I just got another CD4 / VL labs drawn yesterday. I'm told I'll have the results like in 2 weeks.

Would you be able to retrieve the results even though you're going to be out of the country?

[DanMo]

I have no idea I was thinking about that, I'll ask her on Monday during the physical.

[SunnyFlorida]

I have no idea I was thinking about that, I'll ask her on Monday during the physical.

Good idea. I'm thinking it's against HIPAA, but you could probably sign a release or something.

[buginme2]

Why would it be against hippa or would there be a problem?  They have phones in Europe.  Just call and get your results.

[SunnyFlorida]

Why would it be against hippa or would there be a problem?  They have phones in Europe.  Just call and get your results.

I just did quick research on the HIPAA, it says that medical issues cannot be discussed over the telephone unless a special request is made to be called at a specific telephone number. This is to protect a patient's privacy.

[buginme2]

Really? Does that count for lab results too.  I've called my doctor before and got results, including viral load and cd4 counts.  In fact.  When I tested positive for HIV my doctor called me and told me over the phone, haha. 

[SunnyFlorida]

Really? Does that count for lab results too.  I've called my doctor before and got results, including viral load and cd4 counts.  In fact.  When I tested positive for HIV my doctor called me and told me over the phone, haha. 

Hehe... I honestly cannot imagine being told over the phone. I'd rather be told in person, you know?

[buginme2]

Well. To be fair.  I had been going to that doctor for years.  I knew her.  She knew me.  So it wasn't like some strange doctor calling me.  She stayed on the phone with me for awhile and we just talked.  Then I went to her office to do some blood work and talk some more.  Honestly, more medical care in our country (U.S.) should be that way.

[SunnyFlorida]

Well. To be fair.  I had been going to that doctor for years.  I knew her.  She knew me.  So it wasn't like some strange doctor calling me.  She stayed on the phone with me for awhile and we just talked.  Then I went to her office to do some blood work and talk some more.  Honestly, more medical care in our country (U.S.) should be that way.

I agree... I recently "fired" my doctor. You probably saw my thread in the Off Topic forum about that. ANYWAY - let's not derail this thread, LOL! Dan, I'm sure you won't have an issue making arrangements to get your results via phone.

[DanMo]

Wow! You guys sure have been busy! 

When they called me from the Health Department to tell me that the results had arrived, I asked them if they could just tell me over the phone (I didn't feel like driving downtown in the afternoon heat of Orlando and fighting the afternoon traffic) and she said NO, they can't give results over the phone.

I'll ask my doctor about all this, I really wouldn't want to wait till the first week of June to find out my latest numbers.

[tednlou2]

What is strange about these rules is that I can call my doctor's office and get all the info I want.  However, they are not allowed to talk to me via email.  I'm not sure if that is their rule or HIPAA. 

It would seem that if I give them my email address to put into their computers, then that would be more secure than me calling them from any phone number and getting info.  My brother sounds just like me.  And, most of the people at the doc's office probably wouldn't recognize my voice anyway.  They don't even ask for identifying info like social, b-day, or address before giving me info.  So, I think email would be more secure.  The HIV doc I go to is part of the University hospital.  In their pharmacy, they have built these sound-proof little rooms to discuss meds with patients, so others can't hear.  I like that.   

[+/-]

DanMo,

This might be good to read!

http://www.aidsmap.com/Starting-HIV-treatment-when-CD4-cell-count-dips-below-500-improves-AIDS-free-survival/page/1771387/

[eric48]

Hi,

Look at the CD4 lesson and the famous CD4/VL/progression curve

available here:

http://en.wikipedia.org/wiki/File:Hiv-timecourse.png

draw an horizontal line somewhere (you may want to choose 600...) (this is just for sake of example, the curve and graph are very generic, they do not reflect your specifics)

you will see that the horizontal line may intersec the curves in 2 or 3 points. At beginning of infection as well as during the chronic course.

4 months ... you may still be in the early phase. which means that your number 'may' still improve (as well as deteriorate). If you had said 12 months, then you are most likely out of the initial period, but at 4 you may still be in. My doc wanted several labs to see the trend because I tested 7 months after (suspected) infection. At month 7, it seems I had already entered the chronic phase.

the transition between the initial period and chronic period is called the set point.

It is not yet clear whether yo are before or after that point.

All advise you will read about when to start treatment are usually addressing the concerns of people in the chronic period and if you are in the chronic period, you may rely on the when to start treatment guidelines that you will find on this site of official gvt guidelines.

If you are still in the initial period , then it is a catch.

The guidelines will still be valid BUT some people argue that adhering strictly to them in that period would exclude the very few who have the privilege to be naturally able to control the virus without meds from this (rare) chance. In other words if applied 100% in that period may put 5 % of patients under medication who might otherwise not need them.

If you read some comments here recommending you to wait a while, it makes sense. Statistically not much sense, but you'll never know.

You are not at death door, and, 350 CD4 seems to me a little low for someone in the slow decay that characterizes the chronic phase.

I hope this explanation will help you understand why you may be getting discordant advise or opinions.

In my case, I had decided that EVEN in the unlikely event that I would be able to somehow manage without the meds a bit more, I would rather go on meds anyways.

deciding factors where:
- guilt and willing to clean the mess
- my age
- my responsibility in protecting my coworkers/family/sex partners

So I did not allow the virus a chance (nor did I allow my body to prove its resilience, if it has some...)

Except for a very small minority of patients, the meds (and their side effects, if any...) are much less harmfull than the virus, which, as you know, only leaves a chance of 10 years survival to a very limited number of people.

One day I will refine the rabbit analogy...

One thing that has help me make a choice is understanding this:

the life time of a CD4 in a healthy HIV- individual is of months
the like time of a CD4 in a HIV+ after a few weeks of HAART is of a few weeks (going on to normal as time goes)
the life time of a CD4 in a HIVer who is not controlling the virus is ... one day (more or less)

Hope this helps

Eric

[DanMo]

Thanks for providing me that information. It'll take me a couple more times reading over it to try and make sense out it (math has never been my strong suit).

[newt]

The short version of Eric's post is get 2-3 sets of tests (at least) before you decide what to do, it's the trend that counts.

- matt

[alberche]

Dear DanMo,

I started meds just 2 months after being infected. Decided not to wait and see. That was 5 years ago, and it has worked well for me.

If I didn't, maybe now or next year or so I would have to start meds anyway. The difference, in my case, is that I've been all these years with an undetectable viral load and CD4 counts above 1400-1500 most of time. This means HIV activity in my body has been "controlled" and that virus has had much more difficulties to cause damage in my body that could lead to long term health issues. At least, that is what the theories say. I only can tell you that I feel reasonabily well, in spite of psycologicals and mood ups and downs I think we all face from time to time, and other issues related to the 40's: who I am? where I go? so, life was thisl? stamina going away...  

On the other hand, you must bear in mind that starting meds will suppose the need of adhere and being compliant with dosages, timings and takes. That's the key for it to work properly. This is very important to be conscious about this and to have cleared your major doubts before starting.

In the other hand, if you decide not to start now, or you have not this possibility in your country, then the most important thing is the trends in your viral loads and CD4s. CD4s could go up and down in little bumps from one test to the other, but, in the end, with the passing of years, they will tend to go down. What matters is the speed of this tendence.

As per regards to viral load, if you are now in the few months after infection, it will have to go down quickly during the next weeks until it gets to certain values (that difere from one person to the other) and then, it will tend to stabilise around these values during certain time (usually some years). The lower is this value of stabilisation, the better; and the longer your VL remains nearby this value, the better also.

So, if you decide not to start meds now, or it is not possible due to the healthcare you can access to, then, these two values and their evolution are important to be followed up to decide in the future the moment to start meds or, let's say, the latest date as from wich you should not longer wait to start meds.

Enjoy your holidays in Europe, and do not worry too much as per not knowing your results until you go back home. Give your phone number to your doctor so he/she could call you if necessary in case of any urgence. But I'm sure it will not be the case.

Take care