POZ Community Forums
Main Forums => Living With HIV => Topic started by: bc0203 on August 15, 2006, 04:48:03 am
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The past few weeks have been a series of blows for me. First finding out I was poz - I was asymptomatic, so figured we caught it early. In response, I got a good ID specialist, a psychiatrist who seems to have endocrinology as a hobby (I'm bipolar and figure meds will be an issue) and a solid primary care physician an as my core medical team.
About a week ago, the bomb dropped: I found out my CD4 was at 221 and my viral load was at 272,000. Slowly, I'm beginning to get an awareness of what all that means. As best I understand it, given my "viral setpoint":
There are about 80% odds I'll have an AIDS diagnosis in the short term, simply because my T-Cells will drop below 200 before rebounding.
The odds of me developing an opportunistic infection during the next six months is about 10-15%. With this in mind, I need to get vaccinated against OIs NOW rather than wait around.
I may have to go through more than one co use of antivirals to achieve viral suppression, if this is possible at all, given where we are starting.
In other words, it's not rosy, but it's liveable. Am I being realistic here? Is there anything else I need to take into consideration? Last but not least, should I be upset with my ID specialist because they didn't forward my CD4 and viral load results to my physician, or should I just make a point of politely requesting they forward test results each time they become available?
Thanks in advance.
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Hi BC, welcome to the forums.
I can't help but wonder if you might have a new infection? Your high viral load despite being asymptomatic is what makes me wonder, because the viral load can be sky high in the first few months of infection. If this is a new infection, your numbers should stabilise soon, which means your viral load would drop and your CD4 would rise.
As for your ID specialist not forwarding your labs, you need to expressly give him permission to do this - possibly in writing. Otherwise, his hands are tied by the strict laws that protect your privacy and prevent him from disclosing to other health care providers without your permission.
Please read through the Just Tested Poz Welcome Thread (http://forums.poz.com/index.php?topic=2276.0) and follow the links to the other sections of this website. In particular, check out the Lessons, especially the ones about your lab results. One thing you don't mention is your CD4% - you will learn the significance of this number in the labs lesson. If your CD4% is fairly high, this would lend weight to the idea that you have a primary infection.
I'm glad you found us - this place has some of the best hiv information out there. And the forums are like family too - but be warned that just like family, we argue amongst ourselves from time to time. Don't let that put you off, we love each other really. ;)
You are going to be alright. It sounds as though you have a good care team assembled and that is a big part of winning this battle.
Hope to hear more from you soon - and feel free to ask any questions that might come up while reading the lessons - and feel free to come here to vent some of those rollercoaster emotions you're likely to be experiencing. We've all been there.
Hang in there...
Ann
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Hello Bc,
Welcome to the forums. I am sorry to hear about your positive status, but I am sure you will find plenty of support here.
As Ann has stated, if this is a new infection, your viral load numbers will bounce around, and then drop. Your t-cells should continue to rise.
When t-cells drop around the 200 range, that is when opportunistic infections can start occurring. PCP, being the main concern. PCP is a type of pneumonia, but there is no vaccination to prevent this. What does prevent this is BACTRIM, which is an anti-biotic. This is taken until your cd-4's are back up again and maintaining.
I know you are dealing with quite a bit right now, but try to take a breath ! If you haven't already, check out the lesson by clicking below ;
http://www.aidsmeds.com/lessons/StartHere4.htm
The following link, will give you some info on vaccinations : ( you may find it helpful)
http://www.thebody.com/nmai/vaccination.html
http://www.aidsmeds.com/OIs/PCP1.htm
some nutritional info :
http://forums.poz.com/index.php?topic=234.0
Take your time reading, and don't cram yourself with too much info. Take it slowwww....
How often/ frequent are you appointments currently set up for blood work?
Don't hesitate to ask questions. And it is always helpful to have some sort of notebook handy, that when you have questions write them down. It's too easy to forget things, when your going to the doctor.
Stay in touch with us, and let us know how you are doing !! I know things seem tough right now, but you will get through this.
Take care of yourself---------Ray
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When I was diagnosed in Feb/06, my CD4 was 45 and I was already suffering from an undiagnosed bout with PCP. All is not lost, even with low CD4 and OI's taking centre stage. Just adhere to the meds which have been prescribed for you, if any, eat well, get sufficient rest, and live each day to the fullest. If you're anything like me, those days do get better and better.
No need to fret about doctors not passing on your results. My clinic has standing orders from me to fax lab results to my home office but do they ever do it when results become available? No. I just give them a little nudge and a few minutes later, the fax machine starts to purr. The moral: don't be afraid to ask for the things you need to get on with the life you're planning to lead! As Ann points out, you may need to give them something in writing to make the process all official.
Remember to chime in here with any questions you may have. The AidsMeds (AM) team doesn't get paid to offer up their wisdom - they do it because they care about you and what you're facing. We're all in this together.
Best,
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Don't forget to wake up every day and appreciate life!
Don't forget to love those around you!
Don't forget that you aren't alone.
And most of all don't forget that you will make it through all of this and will be a stronger person!
Everyone Else will cover the medical "don't forgets" just thought id cover the other side.
Welcome, brother! Enjoy the ride!
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You said it perfectly ACinKC!
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The odds of me developing an opportunistic infection during the next six months is about 10-15%. With this in mind, I need to get vaccinated against OIs NOW rather than wait around.
I may have to go through more than one co use of antivirals to achieve viral suppression, if this is possible at all, given where we are starting.
If you want, tell us what vaccinations have been ordered for you e.g. Pneumovax ...This forum family, which youre now part of, can be of tremendous help to you if you choose to share your doctor's plan of action with us. The knowledge and experiences here reflect amazing depth.
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Hi bc,
Welcome! I agree with Ann, do you think you are newly infected? If yes, your numbers can increase once the initial fight in your body is over.
If no, I think you have reason be more optimistic in your thoughts. Many, many people find that their cd4 counts climb, and their vl drop significantly when started meds. I personally have had a very low cd4 count for years, and only in the past year have I have some health problems. Try not to let the numbers and the odds decide how you are going to feel. A number is a range, or a guideline for the doctors. If you would drop down below 200 on your cd4's- prophylactic meds for pcp would be started, an examination of your eyes.
Your health is based on how you feel physically, mentally, and spiritually. Eat well, sleep well, moderate exercise, don't abuse drugs or alcohol, go to all your doctor appointments, take all your meds as directed. If you feel a little off, call the doctor.
It sounds like you have a really good medical team working with you. And if you want all the info shared you will probably have to sign a waiver saying it is okay for all the info to be shared. Plus, a gentle reminder at your appointments will help.
Hang in there. It gets better with time.
Christine