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movingon
Fanatic

Reged: 08/27/07
Posts: 66
latest lab results
      #233852 - 11/22/07 02:28 AM

Hey all - i haven't posted for a while as i have been concentrating on living a healthier lifestyle and trying to get my head back on since diagnosis in August. I just want to share my latest results with you all

1st set , August 07 . CD4 284, 29% , V/L 98,000

2nd Set , September 07 . CD4 330, 29%, V/L 257,000

3rd set , today, Nov 22 07. CD4 282, 28% , V/L 306,000

I haven't even had a cold, fever or even a runny nose for almost a year, and nothing since diagnosis. I hit the gym most days and feel great, strong and healthy. I even got my cholesterol down from 5.5 (borderline high) to 4.0 (normal) with regualr work outs and a great diet. I still have the odd drink and the odd smoke, but nothing compared to my old habits.

My doctor now thinks i need to start treatment , and there seems to mixed opinion from a few who think i could wait, to others who say whats the point in waiting ? might as well start now.

In my own mind i have resigned myself to the fact that i should probably start now, but its a hard one to swallow especially when i have never felt fitter and healthier in my entire life than i do at the present moment.

Your comments / advice would be appreciated, as i am a bit scared and worried about what the future holds

cheers


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taurusthecat
Master

Reged: 11/02/06
Posts: 131
Loc: Melbourne, Australia
Re: latest lab results new
      #233855 - 11/22/07 03:22 AM

Hi Lostnscared.

From looking at your numbers, it seems that there is a definite direction happening in your levels, your viral load is rising and your t-cells are falling. Plus, all of your t-cell readings are at or below the level at which they recommend treatment to begin. If I was in your shoes I would be considering starting treatment, especially if the next reading showed that the trend is continuing in the same direction. If you got another reading in another three months which showed the viral load once again higher and the t-cell count even lower, then I would defnintely be requesting treatment to start right away. They seem pretty confident when they say that if your t-cells are below a certain level on a permanent basis you run a much higher risk of developing some sort of health concern, and if your levels kept declining at the same rate (and especially if your viral load kept going up like it is at the same time,) it could be possible that it was a case of not 'if' but 'when' you were going to start feeling sick in some way.

I have just gone on treatment after 8 years of no meds, in the last year I have been feeling steadily worse and worse but even right up to 2 weeks ago when I started, my viral load and t-cell counts were always considered to be in the 'safe' area and not worthy of worrying about. But the way I felt told another story. I posted last night to someone who has a relative who is also considering starting treatment, who like yourself, says he feels fine and not sick in any way, but his counts are sort of borderline and while one doc tells him to put-off treatment another one is urging him to start right away. I'll re-post what I wrote to her here, dunno if it's of any use to you......

Hi Lisa.

I've been pos for 8 years and have only started medication 14 days ago. I'm in a different situation to your Dad, my blood levels were in the acceptable range right up until I began treatment but in the last year I was starting to feel terrible, run down and coming-out in all sorts of skin breakouts and constant colds and so on. I had next to no energy and at 44 was feeling like an old man of 80.
I had to ask and ask and ask to be put on something purely because my blood levels didn't fall below the magic numbers and they were happy to just keep monitoring me. Your Dad feels fine but his levels are lower than that at which they recommend to start treatment . Just goes to show how differently this affects us all I suppose.
At the end of the day, my personal opinion as to whether to begin treatment or not falls mainly in the area of how healthy your Dad feels right now, is he feeling fine and full of energy, at least as full as ever he was? Is he noticing any unusual or persistent little health concerns which he never had before which might be due to his suppressed immune system?
If the answer to those is "no, he's just as normal in every way as ever", it doesn't mean that he shouldn't go on meds, but it does mean that there's no rush to do so. From my own experience (it happened to me for 8 years) it is normal to be told "see you in 3 months for another test" with no urgency to it. HIV specialists/doctors like to look at a viral load and t-cell count over time, and see it in graph form. They want to see the trend, whether it's slowly going up or down or staying static. If they see a gradual and constant decline in t- cell levels then they would be more likely to advise to begin medication, but if for instance it was staying at relatively the same level and the body was coping on it's own, they might just say "let's see what happens in 3 months". It's common for blood levels to spike or fall for one reading and then return back to the normal level again later, so they prefer to see a couple of readings in a row which confirm a trend one way or the other just to avoid jumping to conclusions. I had one spike where my viral load jumped to over 100,000 where it was always only in the tens of thousands, it was only one reading and three months later at the next test it was back down again. Likewise, my t-cell count jumped up and down a bit too, it fell to 350 a couple of times but mostly was in the mid 400's.

Bear in mind that his viral load isn't excessively high, at least I don't think so, mine was up at that level many times and my doctors saw no issue in it.

As some one else has said, taking medication is a big commitment and if he's thinking of doing it he has to know that it's a permanent step and has to be adhered to day in, day out. Missing doses here and there will enable the virus to work around the drugs and develop resistance to them and if that happens he might lose a whole family of particular drugs because they will all be useless on the virus he has after that, because that family of them all work in the same way. That's no good down the track when it can mean he runs out of options.

I have started my meds and haven't had any side effects as yet, except a slight burning sensation in the lining of my mouth which is going away now. I was terrified of side effects, I had heard so much about them and it was one of the things I thought most about when considering starting treatment. But nothing to worry about to date.

If your Dad feels fine right now and is doing OK, he shouldn't panic and I would think fro m what I know, that it's perfectly reasonable for a doctor to want to wait a few more months and see what the trends are in his blood counts before making a decision on when to start treatment.

But if he wants to go ahead and start purely to preserve his current immune system and is happy to commit to the medication every day and knows what he's getting into in that respect, then due to his t-cell levels, no doctor should be telling him not to begin because he falls into the standard guidelines as to when you should begin treatment.

All the best to him and you. He's lucky to have you looking out for him, that's all I can say.


Taurus

--------------------
I'm like fake fruit...... I don't bruise that easy.

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movingon
Fanatic

Reged: 08/27/07
Posts: 66
Re: latest lab results new
      #233856 - 11/22/07 03:39 AM

Hey taurus

Thanks for the reply. I cant honestly say i feel ill, or sick in any way, and have no unusual things happening to me. But i also dont want to get sick, or compromise my immune system any more. tough one .........

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vokz
Grand Master

Reged: 09/06/07
Posts: 164
Loc: London, UK
Re: latest lab results new
      #233857 - 11/22/07 05:22 AM

Chris,

Strange as it may seem, whether or not you feel ill isn’t really the issue here. It is about starting treatment whilst you still have a natural immune function that can deal with most things that can be thrown at it.

All your numbers are in the range where most guidelines recommend you should think seriously about starting treatment .. but none of your numbers are at the point at which most guidelines say that starting treatment is imperative.

Looking at you previous CD4 count, it is easy to say this latest one is down; but in relation to the count before that you are pretty stable and shows that nothing disastrous is going on (indeed, for someone who has also given up smoking during those three snapshots, your CD4s are actually remarkably good). Your CD4% says much the same thing.

I think the real point here is that you are in the window where you should start treatment when YOU feel ready .. but it isn’t urgent and the window isn’t likely to close and become an emergency in the next six months.

What is noticeable is that your viral load is climbing - but still a long way off the point at which any guidelines say to start treatment irrespective of what you CD4s are – and saying that the longer you leave starting treatment, the longer it will take you to get down to an undetectable viral load (which is now your main objective).

If you have rational reasons for saying that you would prefer to wait till the New Year when it will be easier to settle into new routines and make room for dealing with possible side effects (because you are planning to travel in the next month or so, or because it is more practical to ease off a bit at work after Christmas), then that is OK; but just make sure those reasons are a little more solid than “I’m nervous about starting treatment” (which wont change, because you have already had ample time to prepare yourself mentally for starting treatment).

You really need to get to grips with this “I’m scared and worried” thing though, because it isn’t healthy, it achieves nothing and from here on seriously starts to affect your ability to make the right choices and deal with side effects in a more positive manner.


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taurusthecat
Master

Reged: 11/02/06
Posts: 131
Loc: Melbourne, Australia
Re: latest lab results new
      #233859 - 11/22/07 07:45 AM

At the end of the day you will have opinions and views of all sorts offered, and recommendations will be made by your doctors and after all that is done and dusted you will be the one to make up your own mind on what path to follow, when to start treatment and how to manage your long-term health. Seeing yourself as your own main healthcare provider rather than a passive patient just waiting to be told what to do will really REALLY help you through your HIV journey.
This condition is one which is different from just about all others which you would go and seek medical intervention for, in that there is no magic bullet available and no clear-cut guidelines and standard concrete approaches to be taken in order to treat it. Even within the higher levels of HIV research there is rabid debate going on right now over whether to wait as long as possible to treat the illness with medication, to wait until the body loses ability to cope on it's own before taking risks with medication adherence, possible side effects and drug resistance, or to begin as early as possible due to current evidence that suggests it's better to preserve a strong immune system from the start than to try and rebuild one up from disaster. And then on top of that there are varied views around by experts on what exactly the preferred t-cell level should be before starting and what constitutes danger in the long term for the immune system. No two people are the same, no two immune systems are the same, and when you factor-in people's lifestyle choices concerning diet, exercise, genetics, location, stress, bla bla bla, it is virtually impossible for a doctor to do what he might do with a more traditional disease and just say to you "take this pill and you'll be fine" or "if you do what I say you'll be totally healthy from now on and won't have any more worries". You first need to rethink your approach to seeing a doctor and just believing what they tell you and following their directions blindly as most people do when they see their doctor for normal afflictions in the course of their life. This disease is different and in my humble opinion needs to be approached differently by us who are suffering from it. Your doctor can share with you all the information they have in their heads and give you recommendations but it is you who will ultimately decide what to do with that information. There are so many variables and so many things they are still learning that you must take a very proactive role in your own health and do as much reading and research as you can on places such as this excellent resource, weigh up all the pros and cons of all you learn and then make your own informed decision on what steps to take.

In the end you have to make up your own mind on what to do about taking HIV medication and when to start. It really is all your decision.

And that's only the physical medical side of things. On top of that you have the mental effects of just having something which you cannot erase from your body which has to potential to kill you and which you must now deal with and manage for the rest of your life. Over the next year or two especially, you will be regularly thinking about your own mortality and this is not something which we as young people usually have to think about. You would expect that it wouldn't be until you were very elderly and had lived a long life that you would be sitting constantly wondering how long you had left to live. But we all go through it with HIV infection. It wasn't even that for me so much as facing the fact that I WAS going to die at some stage, the concept went from something which was all up in the air and "one day, yeah......" to something which was in my face and very real. It's totally shocking for a person to go through and it's an easy area to overlook when most of what is talked about relates purely to physical symptoms and side-effects.

You also have social repercussions on how it affects your social life, sexual life and how and when you decide to disclose your status to others in a way which both protects others from harm but also protects your own sense of self confidence and dignity, you have the natural flow of your life undeniably altered on a permanent basis, and if your nickname says "lost and scared", who could blame you. It's totally overwhelming to be in your situation and the first year is the worst, so your nic is to be understood. Having HIV is a very involved and disruptive thing in your life, not only from the standpoint of managing the physical effects of it but also from the massive influence it exerts on your state of mind and perceptions of yourself and the world. It's not easy.

Best thing you can do right now is to be as kind to yourself as possible, let your emotions flow how they will and allow yourself to deal with your situation in whatever way works for you. If you feel like shutting yourself away from the world fine, if you need to cry on shoulders, fine. It's almost like a grieving process when someone you love dies, there is no right or wrong way to deal with it and you never know how long it will take to get through and heal from, but you do know that it will take time and that everybody has their own way to deal with it.

Accept number one, first and foremost that the reality of this is that this is something which is with you permanently, that it is now your reality. It will take your head a while to comfortably come to terms with it, but it will happen in it's own time. And accept number two that you have to become your own doctor, you should read-up on all treatment options, sift through all the information you can find on medication, diet, stress, and take professional advice onboard as it's given by your doctor. You have many options available to you to treat this thing in respect of how and when and the decision will be totally up to you as to what you do. That's why you need to read, read and read. Ask questions as they come to your mind of others who have been there before to get anecdotal feedback.

At the end of the day having HIV for me has meant that I have taken more care of myself and see my treatment as a very holistic process, more than just medication, it's being good to your body and mind, eating well, keeping stress down, being proactive in your own health management plan. It's forced me to take better care of myself day to day and also value my life so much more than I ever did before infection. In a twisted backwards sort of way, sometimes I think I'm better-off now due to my upgraded care and awareness of my own body and what it needs to be happy and whole than I ever was before.


Taurus

--------------------
I'm like fake fruit...... I don't bruise that easy.

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impoz
All Star

Reged: 10/12/07
Posts: 89
Loc: Vegas Baby
Re: latest lab results new
      #233860 - 11/22/07 07:56 AM

Hey Man,
I can't really offer to much in the way of advice,Cuz I'm kinda in the same boat in that I'm going to see my new (HIV)
Doctor on the 28th and I'm not sure about meds or anything else.I will say its your life and health and body do what makes you happy.

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vokz
Grand Master

Reged: 09/06/07
Posts: 164
Loc: London, UK
Re: latest lab results new
      #233861 - 11/22/07 08:33 AM

Chris,

You’ll see from Taurus’ replies that our approaches are, in many ways, just about as diametrically opposed as it is possible to get.

Neither of us is right, because we each espouse what works for us .. and YOU have to figure out what works for YOU .. which will probably different again.


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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: latest lab results new
      #233879 - 11/22/07 10:05 PM

Chris I think you know what I have to say about this...

Hugs,

Eric

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movingon
Fanatic

Reged: 08/27/07
Posts: 66
Re: latest lab results new
      #233882 - 11/22/07 10:20 PM

cheers all, food for thought. I will let you all know what i decide in due course

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TRex
Master

Reged: 01/09/07
Posts: 129
Loc: California, USA
Re: latest lab results new
      #233886 - 11/23/07 01:24 AM

If you had my ID doctor she would be starting you on treatment. Your viral load is continuing to climb and your CD4 is within the level of starting treatment. You want to keep your % up there. Good luck my friend. I'm glad you are still living a healthly lifestyle. I hope your mindset is doing well. Glad to hear from you.
Bernie

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: latest lab results new
      #233916 - 11/23/07 10:42 PM

Chris... I would get through the holidays and then jump on the bandwagon with the rest of us arv'ers. Your % is good enough to hold you through new years without much worry. Your cd4 count is higher than what you think based off of your %'s but that my opinion which can be confirmed in ask the experts if you so desire..

E

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