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Irishka, that's terrible. Get him another doctor ASAP. This sounds like no treatment I'm familiar with, and I'm a 22 yr survivor. I've seen lots and this doesn't sound right.
Richard, I am sorry you have to go through difficult time with meds and numbers. I can not imagine what it's like! I need help from someone who goes trough similar situation my ex is going through. My ex-husband was diognosed with HIV a year and a half ago. No symptoms, low viral load, T-cell count in the normal range, however he was put on permanent broad-spectrum antibiotic prophylaxis to prevent OI. Aren't OI of fungal and bacterial nature and sometimes have nothing to do with immunodeficiency? I know that the massive amounts of antibiotics can eradicate normal flora and actually lead to OI. And also his doc suggested to start HAART's which are, quite frenkly, very expensive, so he did. My question is why to put my ex on large amounts of powerful antibiotics and HAART if his numbers are fine and he's asymptomatic? Now he's got persistant diarrhea, vomiting, lost tons of weight :( Whatthe? message surprised me and confused me even more. His viral load does not correlate to his T-cell count. No correlation! How could that be? Isn't viral load suppose to go down while T-cell increases? And his doctor couldn't explain that anomality to him? After 25 years of research, billions of dollars spend and doctors still can't give a clear answer on viral load and T-cell count? I am angry and pissed and very saddened that people are giving death sentense, put on 20+ plus meds a day, horendous side effects, no quality life and still no cure!!!
Here is a suggestion...find another "doctor"; I would stongly urge an AIDS certified nurse practitioner (that is what I am) to help you through this time. The "no interest" from your medical provider is NOT an option or open for discussion. If they are not "interested" then get your ass out the door. Would you tolerate the same answer from a mechanic about your car? Not likely but medical providers seem to get a free pass much too often. This is your life; live it bravely.
So Richard, Thank you for posting this! Synchronicity in a way. I have been struggling with the questions you are talking about...what do these numbers mean? I am in alternative healthcare and have resisted the meds for nearly 7 years. About 4 months ago I decided to start meds due to declining tcells near AIDS level, but with undetectable viral loads and the swine flu panic. I am 'allergic' to the flu vaccines so they are not options. My doctor seems to think it a great success that my viral load from the past two lab results has been undetectable, but can't explain to me why my tcells have DECLINED since initiating haart and seems to want to overlook that fact. So what does it mean? Was I better off before the meds? What are they actually doing for me if I was undetectable before using them and am still undetectable now that I'm on them? I had more Tcells before I started taking them. So do I stop the meds? Do I go back to not have nightmares or syncope while lying down at night watching tv that my doc also seems not interested in getting to the route of? Why is it all about numbers and lets ignore the quality of life?
Thank You
We all have some sound to give to the voice of this epidemic...thank you for sharing yours. I truly understand how hard that can be at times; actually most times. Ric
I do relate to you and your anger with this damned disease although I have been poz for only 8 years . I am sick of people pitying me , relatives who look at me with smug, sad faces . I just want to scream sometimes that I am human this has happened to me it has nothing to do with you . I went through the hep c treatment and hid from everyone until it was over . I lost 60 lbs on a 5'6 frame my eyes were sunken . First thing my gay best friend said was oh you look great ..I just wanted for one second him to climb into my shoes . You know the type actually you probably slept with him everyone else did . Big beautiful blue eyes and a big dick. I gave him some condoms to use ( I counted them) I went to visit him in the summer they were all there all of them . I am a top I won't get it . I pull out before I come ...my god I think Your best friend is poz and you still think the same way you did in the 80's. I watched and cared for all my friends who passed one by one until I was the only one left and I would probably still be negitive if it wasn't for my stupidity of trusting someone who raped and gave me this . I had such bad self esteem that is the only thing that saved me for so long . I was to ugly for the gay world I wasn't perfect with a perfect body so I was safe . Until this guy puts me out ,and rapes me . He is still around somewhere rotting in his Karma . I have no idea why I wrote all this to you , but I did mentioned you in my blog and even put in a link . You say what I want to but I don't keep up the work you do hopefully some twink will get it and take care of themselves and the ones they choose to sleep with .
Richard Ferri
Irishka, I hear and totally understand your concerns, fear, and justified frustration. I am as confused as you seem to be. If your exs' CD4 count is above 200 there isn't any reason for him to be on OI preventative therapy. I strongly suggest you find out his exact CD4 count, HIV viral load, and his anti-HIV medications. If his Harts working well for at least several (six usually) months then the OI stuff does not make sense, but I am trying not to play "armchair doctor" here. I am here to educate. I also suggest you go and read up on OIs at www.AIDSmeds.com (the best HIV information site around!) While I know it does not any sort of common sense for the VL and T cell counts to be disconnected but in fact it is very normal for that to happen. Try to think of the VL as the ACTIVE and HARMFUL HIV in a body. Simply put the higher the VL results in a higher number or viral particles. The HIV particles (or virons) the more CD4 cells are destroyed. The VL acts "rapidly" and destroys T cells. Remember once a T cell is destroyed it is gone. It does not "come back". So while a person's VL goes down rather quickly with an effective regimen the CD4 count can take time to "build up" since the high VL has already done it's damage. What is going on now is that body is NO LONGER being rapidly assaulted by the high VL and many of the new T cells being mad do not get infected with HIV or handle the virus better. So it simply takes time. The body is recuperating from the onslaught of a HIGH VL. However, lets put the science aside for second. Side effects can and should be treated. If they are not being taken of to your exs' satisfaction then he needs to speak up. Or have someone speak up with and for him. Also, without knowing where you live (feel free to email that info at rick@richardferri.com) you should be able to get substantial assistance for HIV therapy. I would also suggest that you consider getting your ex connected with a local AIDS Service Organization (ASO) so they can do all the "leg work" for him and get him the benefits he needs. AIDS is NOT a death sentence in resource rich countries.... getting a new provider may be your best options as Kevin suggested. PLEASE LET ME KNOW WHAT IS GOING ON AND HOW I CAN HELP!!!
January 25, 2010