POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: tommy246 on April 17, 2009, 03:39:45 pm
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Hello i have just joined today after being diagnosed on 3 december 2008 .I have read alot on this site and found it helpful as i have not yet told anybody of my situation ,for various reasons .I have been infected in the last 2 or 3 years .My results in january 2009 were 505c4 , 1700 viral load and 16%, today was 635c4 ,viral load ? tell me next week and 16 %. Since testing pos i have cut down on drink and am eating healthlier food and after the initial fear and shock of being diagnosed i am trying to be positive and keep busy. On monday i am going to tell my wife (no sex for many years) and was just wandering about my results are they ok as i believe the % is quite low ? thanks.I am 48 years old.
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Sorry you have been dealing with this so long without telling anyone. First, welcome. Second, you really need to tell your wife as soon as possible. I told my partner the nite I found out. It was hard and will never be easy or the right time. Thank god he was negative and we moved on from it and still together almost 2 years later. About your labs....to me your CD4 percentage is very low 16%. I remember reading months ago that 21% is borderline for really considering meds. Your CD4 of 505 and 635 is good but not with a low percentage....you need more white blood cells to fight off as many OIs as possible. I really hope you have been educated about the drugs available to you and my advise is to really start thinking about them. You will feel much better once your VL is undetectable. OH...you do have a low viral load...which is good...but to me your CD4% is more important--it needs to be higher. I watched my CD4% hang around 23% for months before I just finally started meds. I had read that new recommendations were to start once your CD4 went below 25%. So, I took the plunge and so glad I did. I feel so much better and have so much more energy. I wish you luck with your talk and let us know how it goes. You are now part of this big family. We are here for you.
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Thanks for the advice.I forgot to mention i did tell my brother who was helpful. I live in spain and all treatment is through three specialists through the main hospital.The one i am seeing has been there twenty years dealing with hiv patients.However it was me who mentioned my % being low but he said it wasnt a worry as i had a good c4 count of 635 ,he told me he prefers to start patients on meds at 350 c4 count as they are powerful drugs obviously taking into consideration the % factor as well. Before my diagnosis i partied alot late nights and heavy drinking ,i have changed that and now eat alot healthier ,rest more and drink alot less (might stop completely ? ).So i dont know if that is why my c4 has gone up? also can the % also go up with healthy lifestyle?Lastly how important is it to go to the gym and what training is best and does this boost immune system?. Sorry if some questions seem a bit dumb i have so many and thankyou for your kind help. One thing i focus on is my 8 year old daughter to keep me positive,i want to see her grow up and be there for her. Do you think my doctor is a bit old school in his attitude to starting meds ?
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Hello Tommy
Just thought I'd add a welcome to the forums.
Don't know if you have found the lessons section of this site yet, but they have a good section on when to start. https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
Current guidelines are to start no later than a tcell count of 350 if you can. As the drugs get easier to tolerate many people are starting earlier than 350. Given that you have a low percentage and are in your late 40's you might want to think about starting sooner (the risk of bad things happening when you delay medication increase as you get older). Still, with such a healthy count you can afford to spend some time educating yourself on the disease and the treatments -- perhaps wait for another blood test as well to see if the percent starts to improve.
Also, exercise is generally good for us -- but if you haven't been exercising for the past few years and are in your 40's you should probably talk to your doctor before you start anything major ... just to make sure that your heart and other organs are ok with the stress.
Hope to hear more from you.
Assurbanipal
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Thanks for the advice ,i am definately going to wait for another blood test to see if my % will rise, i made lifestyle changes 3 months ago after my last results ,better diet less drink i dont know if that helped my c4 count go up ,and from today i am going one step further and stopping drinking alltogether and starting some light exercise swimming to start.
I do think i would find it difficult to try and tell my specialist when i should start meds surely with 20 years experience he knows best,i look and feel healthy just get tired quite easily maybe that is a bit stress/worry related.
Opinions on starting meds on this forum tend to vary alot to be honest i feel a bit confused. Also like i said before i really lived in the fast lane before my diagnosis maybe thats why my % was so low and with my new lifestyle it could rise. ??? OPINIONS PLEASE ?
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Hi Tommy, welcome to the forums.
Leading a healthier lifestyle certainly won't hurt! As for the tiredness, stress can and will contribute to that. Try to ensure you're getting enough sleep and eating right - eating right will go a long way towards giving you more energy.
Overall, your numbers are quite good. Your VL is very low, which is excellent. Your absolute CD4 is excellent as well, and while your CD4% isn't very high, it's not in the danger zone either.
Opinions on when to start do vary, with the exception of when someone consistently has very bad numbers, or is diagnosed with hiv and an OI at the same time. The bottom line where you're concerned is that you have very GOOD numbers and that means you have time to learn more and get more results under your belt before you make any treatment decisions. I strongly recommend you take advantage of that time.
I've been poz for coming up on twelve years now, and still no meds. My numbers have been all over the place during that time, but if I'd made treatment decisions on some of the poorer results I've had, there have been many times when I would have started. However, I've always waited to see if there was a distinct downward trend and even the one time when I had four consecutive downward results, there was always an improvement (sometimes a HUGE improvement) and so I'm still not on meds.
So yes, I'm one of the people who recommends waiting and watching your numbers for distinct and lasting trends before starting meds. (Again, except in the case of someone diagnosed with very bad numbers and perhaps an OI or two.)
Some others subscribe to a more aggressive treatment philosophy and I have to admit that when I was newly diagnosed, I wanted to feel as though I was doing something against the virus and start treatment. My doctor patiently explained to me why that wasn't necessarily the best approach - it sounds as though your doctor has done the same - and I'm very grateful he did. Not only have I had many med-free years, but I've also watched the treatments improve. The combo I would have had to start with, if I'd started at diagnosis, is very different to the combo I'd have if I started tomorrow - and the newer combo is MUCH more user friendly.
So my opinion/recommendation is that you take your time (because you CAN), learn about the virus and the meds, watch your numbers and take good care of yourself. You don't have to cut out having fun, just remember, all things in moderation. I drink in moderation and I smoke ciggies too, and I'm fine. In fact, for eight years I didn't drink at all, due to (now-cured since '03) hep C. I've been drinking again in moderation for just over a year now, with no noticeable effect on my numbers.
Hang in there, you're going to be ok.
Ann
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I always love your wisdom Ann....
I just want to add...that you are the patient. Go by how your body is feeling....I went months without meds...and eventually just felt so tired....more tired than I can imagine. I felt I needed to do something....so after a year of watching my numbers....I started....the doctors told me I could wait longer....but I felt something inside me saying..."its time"....
So...just remember...this is your body...and dont feel afraid of your doctors...they can make mistakes too...nobody is perfect....just follow your own gut and instinct. This is your life...
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Thanks for the comments ,it seems a choice between people who feel that what damages our bodies the most the virus or the meds. The info i am getting here in spain is that the meds are constantly improving and with less side effects especially with the lipo side of things.
I got my % result today it has shot up from 1700 three months ago to 60,000 is this a usual occurance to bounce like this and can it lower again,sorry if these questions sound dumb but its all so new to me that im still at the worrying stage but improving daily.
I also agree you have to follow your gut feeling to a degree i feel generally ok just tired sometimes but my job can do that to me its more of mental fatigue.
Ann you have been med free for many years what do you put it down to do you have a special diet or special vitamins and is there a high % of people out there like you? I dont want to sound cheeky but am curious what are your levels at now,thanks all tommy.
ps.forgot to say i told my wife today she has been amazing in her responce she is going to be tested tommorow just for peice of mind as we havent had sexual contact for a few years now.
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Hi Tommy
Many of the blood tests are really rather imprecise measures. For a viral load test the new result is only significant if it changes by a factor of more than three. So if your viral load was 1700 last time, a measurement of anywhere from 570 to 5100 would be basically no change. But if you went from 1700 to 60,000 that is a significant change and something to talk over with your doctor.
But not to panic -- you do have strong CD4 counts.
(Note for future reference the significant figures for CD4 count are +/- 30% and for CD4 percentage +/- 3%)
Regards
Assurbanipal
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Got some good news today my wife is negative which i expected but there was a tiny doubt, i now wish i had told her when i was first diagnosed. I seem to be growing mentally stronger day by day now by being positive about the future,there are good meds out there when needed so i cant live my life worrying about all different scenarios whats going to happen will happen if i worry or not .I know my life wont be the same again but i am going to be focused and upbeat .Trivial things that used to seem important are now non issues to me.
I can even accept the fact that my wife could leave me although i prefer to stay together as although not a perfect marraige (if that exists) we are not unhappy and have a 8 year old daughter who i want to be there for and see grow up.I have told her today that i will respect her decision and will always be there for her and my daughter but asked her to just give it time to see how things go.
We had a really bad patch 2 to 3 years ago and nearly split up and the thought devastated me, more for the fact i wouldnt see my daughter daily,but since my diagnosis i am thinking different ,i would still see her ,she will always be my daughter ,so i will deal with it if needs be.
Lastly would like to say GOD BLESS YOU ALL this site has saved me i have read it most days since i was diagnosed in december and only posted this week its a mine of great info and advice ,and makes me think how people must of suffered in the early days of this disease without sites like this or meds my heart goes out to those people.thankyou.
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Well Tommy, congratulate yourself because you finally got me to put my numbers into a Notepad file so I can add to them and cut and paste them for here when the mood strikes me. I've been meaning to do this for ages. ;)
Drum-roll please...
2001 - year 4
2001-02-22 CD4 490 VL 80,700
2001-05-29 CD4 440 VL 43,700
2001-07-10 CD4 350 VL 43,700
2001-08-07 CD4 480 VL 25,700
2001-08-21 CD4 660 VL ? - taken during hospital stay to investigate the state of my liver
2001-10-08 CD4 470 VL 91,100
2001-12-04 CD4 620 VL 96,200
2002 - year 5
2002-02-04 CD4 620 VL 21,000
2002-04-11 CD4 530 26% VL ? - Started hep C treatment
2002-07-10 CD4 460, 27% VL ?
2002-09-11 CD4 530, 26% VL ?
2002-10-09 CD4 322, 31% VL 30,300
2003 - year 6
2003-01-08 CD4 363, 23% VL 17,800
2003-04-02 CD4 410 VL 6,940 - Finished hep C treatment
2003-07-07 CD4 474 VL 40,700
2003-10 ?? missing from personal records
2004 - year 7
2004-01-28 CD4 518, 28% VL 29,900
2004-03-16 CD4 281, 23% VL 7,370 - Shingles
2004-06-01 CD4 460, 27% VL 7,740
2004-08-30 CD4 568, 26% VL 13,000
2004-11-23 CD4 645, 28% VL 11,000
2005 - year 8
2005-02-15 CD4 532, 27% VL 3,350
2005-03-29 CD4 715, 28% VL ?
2005-06-21 CD4 660, 26% VL 6,580
2005-08-02 CD4 732, 28% VL ?
2005-10-12 CD4 320, 25% VL ? - post-op
2005-11-08 CD4 786, 28% VL 10,200
2006 - year 9
2006-01-31 CD4 787, 32% VL 12,500
2006-04-25 CD4 628, 29% VL 11,800
2006-07-18 CD4 550, 26% VL 18,400
2006-10-17 CD4 447, 26% VL 14,500
2007 - year 10
2007-01-16 CD4 567, 26% VL 12,600
2007-04-10 CD4 441, 26% VL 7,610
2007-07-03 CD4 411, 25% VL 5,630
2007-09-25 CD4 525, 27% VL 16,700
2007-12-18 CD4 229, 22% VL 12,900
2008 - year 11
2008-02-05 CD4 489, 19% VL 13,700
2008-04-29 CD4 433, 26% VL 10,700
2008-07-22 CD4 314, 27% VL 10,200
2008-11-04 CD4 470, 29% VL 3,050
2009 - year 12
2009-01-27 CD4 459, 25% VL 6,700
2009-04-21 results not yet in
The dates are year-month-day. Notes on the side are to explain something that was going on at the time of the blood draw. In the case of shingles, the blood draw occurred when I was nearly over them. The post-op result was taken out of curiosity while in hospital after having some misplaced breast tissue removed (from my underarm) along with a dodgy lymph node. Lymph node biopsied ok. As you can see, I don't have CD4% records from before I started the hep C treatment. Where the VL is missing, it's because it wasn't tested for.
Also, I only have numbers since 2001 because this is when I was diagnosed. With hind-sight, I know for a fact that I was infected late April/early May of 1997. This means I was four years into my infection when diagnosed.
I don't do anything special at all concerning diet, exercise, or whatever. I mainly try to keep my stress levels down to a low roar, eat a sensible diet and as I said before, all things in moderation.
At the end of the day, everyone's body deals with this virus differently. While some might swear by supplements or similar, there are many, many people who do the same, yet their virus progresses at a steady, or even alarming, rate. Unless you're drinking a couple bottles of scotch a day, or going on regular crack/crystal binges or otherwise treating your body very badly, you can't really blame yourself if your virus progresses. Likewise, if you go the ultra-healthy route, you cannot really claim that is the reason for non or slow progression. This virus does what it bloody well wants to, regardless of what we might think. The ONLY thing proven to stop hiv in its tracks is antiretroviral therapy.
That's wonderful news about your wife testing negative.
Ann