Finally Its My Turn

[bear60]

Good news.
My doctor gave me the go ahead to have blood drawn here in Philadelphia to be sent to Boston for the "HIV Elite Controller Study".
So, without further adoo, I made an appointment to have the blood drawn this morning and went in at 9:30 Am to get it done.  My doctor is great.  She didnt send me to the blood lab because she wasnt sure they would do it.  (Too much bureaucratic red tape?) So she had one of her technicians do it for me in her office.
Other than the fact that I had to sign away my life ( just kidding) there have been no hitches so far. 
Lets hope this study goes somewhere!!!!
( This study is unique in that it brings the power of the Human Genome Project to the study of HIV.  It adresses the key viral, host genetic and immunologic contributions of those of us who seem to have overcome the virus on our own.)

[Longislander]

Congrats! On both the ability to join the study, and being an Elite Controller!

[ACinKC]

Sweet news Bear! 

[allopathicholistic]

many thanks for your contributions to our cause ... earlier i thought you were going up to boston physically and i thought oh how nice he gets a trip 

[Ihavehope]

Go Bear! 

[Javicho]

That was really nice Bear, thank you.

J.

[Central79]

Hey Bear

Congrats on this and thanks for participating. I really think that the cure is somewhere inside guys like you (underneath all that hair  ).

I wonder if you've posted anywhere on here about your experiences of being an elite controller - what's your CD4 and viral load at, how long you've been infected and how do you feel in yourself?

Cheers,

Matt.

[bear60]

Marco23 was asking about this study.  There has been much discussion about this study on this forum.  OzPaul, I believe is a member who has traveled to Boston from Australia to donate blood for this study.  As well, a member from California, Crusader, has come to the east coast to donate blood for this study in Boston and another study at the NIH.
In a nutshell these studies are trying to find out what is genetically different about us that makes us able to sustain an undectable viral load without ever taking any meds. I might add that they apparently are not interested in our diets, whether we smoke or not and they never asked me if I had done any holistic treatments. I was surprised at that.  The only two questions I was asked were:
1.  When were you diagnosed with HIV?
2. Have you ever taken any medications to treat the HIV.?
 They are asking my doctor to make copies of my records for them, of course.
Here is the link to the study:
http://www.massgeneral.org/aids/hiv_elite_controllers.asp

Modified to add: if anyone else qualifies for this study, its easy to participate because your blood can be drawn at your doctors office and shipped FedEx Express to Boston.  Obviously your doctor has to agree to participate!!!!! Mine was at first: "I'm not doing this unless they compensate me for the blood draw." I kept my fingers crossed , but it seems the study folks worked something out with my doctor.

[bear60]

Matt...since you asked.....
Its really simple..... I was tested for HIV almost as soon as we had free anonymous testing here in Philadelphia. 1989. I am now 62 years old.
My initial blood work showed a cd4 of 540.  At the time noone started meds until their Cd4 count was below 500. I had blood work done on a regular basis all these years and although I dont have the numbers here,  the subsequent Cd4 counts stayed above 500.  Actually the fluctuation was huge from one blood draw to the next. So it went  from 540 to 650 to 800  to 600  to 800.  Then the viral load test was introduced and I tested less than 50 consistently. My Cd4 went as high as 1100, and then back to 800 then back to 1100. and so on.
My % was never done.
At one point I was convinced that I did not have HIV and then asked to be tested again.  It still came back positive.
I have never adhered to any strict diet and smoked up until 6 months ago. ( I smoked even more after I was diagnosed!  ) I drink alchohol when I want but have cut back from drinking every day.)
The most difficult part of being a Long Term Non Progressor is that I have had to witness the burials or cremations of most of my friends. My former partner died from complications due to AIDS in 1995 and my present partner is HIV/AIDS.  I have learned the fine art of caregiving and have only one thing to say to anyone taking care of a loved one who has a serious illness.  Treat them exactly like you would if they were not sick. 
So, Matt, in a word, being a LTNP sucks at times.

[skeebo1969]

   Joel,

    I was unaware you were a LTNP..  I, like you, hope something comes of the study.  Shit now I know where the "Godfather" comment is coming from.   You may be the one

   I know how it feels to care for someone and know there is not much you can do, but make them comfortable.   It's amazing what a turkey sandwhich w/tomato while watching Judge Judy would do for my mother before the chemo changed her diet permanently til the end.

  Keep us updated.

  Thomas

[redhotmuslbear]

if anyone else qualifies for this study, its easy to participate because your blood can be drawn at your doctors office and shipped FedEx Express to Boston.  Obviously your doctor has to agree to participate!!!!! Mine was at first: "I'm not doing this unless they compensate me for the blood draw." I kept my fingers crossed , but it seems the study folks worked something out with my doctor.

Congrats, Bear, on enrolling!

The study pays participating physicians for handling the consent paperwork, drawing the blood, and shipping it back to Boston promptly.  The compensation seems to be a fair incentive, in addition to the insight the docs get into the project.

In October, when I was close to being eligible after being off meds almost 52 weeks and maintaining a viral load between 75 and 500, I called my former HIV doc about taking me back, doing the confirmatory labs, and eventually enrolling me in the study.  She had heard of the study but had no patients who could qualify;  yet, she was eager to see me.  As soon as she faxed me the lab results, I put the study coordinator in touch with the doc, and they exchanged the necessary paperwork.  The only thing for me to do was go into the office when the 20 5cc vials arrived for the draw.  The nurse was not excited, given how difficult getting blood for routine labs was, but we got through the draw with only three needle sticks.  NIH had routinely taken 25cc of blood from me at each visit "for future research purposes," but the Elite Controllers draw was still the biggest amount of blood I have had taken at one time.  Still, I'm looking forward to giving them more if they need it!  The HIV doc told me to keep getting quarterly labs done with my internist and that she wouldn't expect to see me unless the study wanted more blood or my numbers took an unexpected turn.

-D

[bear60]

Thomas....
Now you know!
The lot of a LTNP is not easy ( due to the fact that I have developed "survivors guilt")  but its not nearly as difficult as what those of you who are taking meds are going through.  Having to monitor the meds and keep doctors appointments and take all those pills is a full time job.  I know.  I live with a guy who is on disability and has that as his full time job. So, compared to you I got it easy.  
I just need to find a way to deal with the depression I feel.  Day to day , my friend.  Day to day.

[manchesteruk]

Congratulations Bear!  I have been accepted onto the study myself and am going to give blood for it early next month.  I was told it's probably just a one off as well and to get in touch in a couple of months to speak to one of the researchers to find out a little more about my particular response to HIV.  Sounds interesting although i've no idea what they'll be talking about!

[Central79]

Hey Bear

Thanks for writing - and thanks to the other guys on the forum who are LTNP and are participating in this important study. I have to confess my jaw dropped slightly when you wrote about your doctor refusing to participate unless he was renumerated financially - the cost of taking and fedexing a tube of blood is pretty minimal after all, and we're talking about a disease that has killed millions of people and will go on doing so in the developing world for the forseeable future. Weird.

I so hope I'm a long-term non-progressor! Of course, that would have a totally different meaning now, when positive people are doing so much better. I can't imagine what it must have been like to have the disease, but remained healthy whilst your friends and lovers died. And you care for somebody ill with HIV/AIDS now - I think that's incredible. I hope that you perhaps will start to experience less survivor guilt. You've got the genetic key for controlling HIV - that's Darwin and evolution at work and has nothing to do with whether you're more/less deserving than the people who died. And you can help us understand the virus so that people in Africa can stop experiencing the holocaust you went through, and so those of us in developed countries can stop taking toxic medications.

I hope you are receiving practical support from people around you. You certainly deserve it for your care of your partner and of total strangers in participating in this trial. If you're dealing with depression, maybe a medication would help? Or therapy? I'm trying both - antidepressants have helped me in the past, and the therapy is an ongoing thing.

Matt x.

[marco23]

Thank you so much for explaining, that's so interesting!!  
Ever since I've started posting in this forum, you've always been kind and caring..you're such a good man!   You and your hubby are very lucky to have each other!
CONGRATS!!

[bear60]

Matt
You are very kind. Thank you. I am taking Wellbutrin as a stop smoking aid. Wellbutrin is going to be my antidepressant I think. My doctor wants me to stay on it. 
As for the blood draw....its 10 vials of blood.  So each had to be wrapped and put in a sleeve and etc.

[Val]

Félicitations, Bear!  Hope everything goes well for you in this programme.   Thanks for sharing!

Val
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[Christine]

Hi Bear,
Thanks for participating in the study. Here's to hoping that the key to stopping this virus will be found in those little test tubes!

Christine

[Florida69]

Good work... Keep it up... D

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