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  1. #1
    Join Date
    Aug 2008
    Posts
    2,841
    I'm really sorry - I know it's very hard to see someone you love suffer.

    I've been reading about some promising research recently on HIV/aids but I'm not sure whether it's reached clinical trial stage - but it might be worth researching to see if it's an option for your brother. Basically they did "cure" HIV in one person a couple years back by happening to be able to give them a bone marrow transplant from a CCR5- donor, so that the new immune system was HIV resistant. Since the odds of a MHC compatible bone marrow match that happens to be CCR5- are fairly low, there's various efforts to be able to genetically engineer bone marrow stem cells to suppress CCR5 expression.

    clinicaltrials.gov should have a list of any HIV trials that are being done.

    This might help:
    http://investor.sangamo.com/released...leaseID=363201

  2. #2
    Join Date
    Nov 2007
    Location
    Western Canada-prairies, mountain & ocean
    Posts
    6,984
    ((I'm sorry Winding.)) Does your brother live far from you? I hope you'll get together soon.
    My Personal blog on cycling & other favourite passions.
    遙知馬力日久見人心 Over a long distance, you learn about the strength of your horse; over a long period of time, you get to know what’s in a person’s heart.

  3. #3
    Join Date
    Sep 2007
    Location
    Uncanny Valley
    Posts
    14,498
    (((((((Windingroad & brother)))))))

    Uncertainty and chronic illness can be h*ll on everyone, sometimes even worse than having a definite outcome looming.

    Hang in there. Keeping you both in my thoughts.
    Speed comes from what you put behind you. - Judi Ketteler

  4. #4
    Join Date
    Mar 2010
    Posts
    25
    (((((HUGS))))))) Keeping you and your brother in my thoughts.....((((HUGS))))

  5. #5
    Join Date
    Oct 2007
    Location
    Indianapolis, IN
    Posts
    1,033
    Thanks for all of the support it really means a lot to me. My brother is one of those patient's who is in remarkably good shape, in fact he also informed me he is now training for a triathlon. He's an awesome cyclist! He gets his blood tested all the time, he does what he's supposed to. Unfortunately he was a raging alcoholic a few years back and that was when he contracted the virus. But he seems to have changed mentally and physically for the better since his diagnosis (aside from the obvious of course). I just hope my niece doesn't have to go down that road (alcoholism runs in the family). She doesn't know her dads condition but I think she is starting to suspect it. For that matter my parents don't know either because we were afraid my mom would constantly worry about every little thing. I suggested to my brother we reconsider telling my parents. After all we were never sick as kids so I know my mom will start piecing things together soon if she hasn't already. So many variables in the equation.... the CC5R therapy is looking very promising. The good news is that he is just starting therapy and his doctor believes he is going to respond better than most given his good physical condition and that he is only just now needing medication. He obviously isn't feeling bad at all he's still training for the Hill Country Ride in April. It's a hundred mile ride to raise money for AIDS research. It's in Austin, Texas: those hills aren't for the faint of heart. This is why I say my brother has turned into an awesome cyclist, for one he's doing the HCR and another he's doing it on an very old steel Allez with downtube shifters. Bike is in great shape but most of the guys he rides with have fancy new carbon super lightweight bikes. He rocks!

  6. #6
    Join Date
    Aug 2001
    Location
    northern california
    Posts
    1,460
    I don't have much to add except to say that my thoughts are with you and your brother.

  7. #7
    Join Date
    Sep 2006
    Location
    Central Indiana
    Posts
    6,034
    Lots of hugs, WindingRoad. I'm very sorry to hear about your brother's diagnosis. I'm glad, however, that the diagnosis sobered him up. Mentally and physically, that has to help his situation, as well as his daughter's.
    Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Continue to learn. Appreciate your friends. Do what you love. Live as if this is all there is.

    --Mary Anne Radmacher

 

 

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