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LTNP: Life as a Lab Rat

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redhotmuslbear:
We see bits in postings here and there, but how many long-term survivors here have been labelled Long-Term Non-Progressors (LTNPs) based on a history of stable infection in the absence of meds, along with genetic testing?  Of LTNPs, who's given up whole blood, lymphocytes, and other samples for study?  And how often?

NIH has about 250cc of whole blood taken over eight months.  Elite Controllers got their 100.  Hopkins took a little.  And now NIH is eager to try again at apheresis, in hopes of harvesting my bellicose lymphocytes periodically.  I've do my Sally Field number "You like me...you really, really like me" number each time.

Still, I've found the LTNP label to be a distinction that elicits a number of conflicting feeling myself and among other HIVers when it comes up.  It's greeted as another layer of "healthy poz" viral apartheid, and non-HIVers often perceive it as some special annointing while thoughts of all of the gerbils I must have had 25-30 years ago.  So, sure, it's nice to have lots of people taking an interest in my body without objectifying me, and I'd feel rotten if I didn't let them have what they want.... but, dammit, I'd just like to be "normal" sometimes!

David

Moffie65:
Wow David,

That is the most honest thing I've heard out of an LTPN in forever!

I have to tell you, at times; when I was still in my 11 year progression to full AIDS, as they used to say, I often felt some sort of "difference" between me and all those who were suffering so much.  It was a full on fight just to stay sane at times, when one by one, they would wither and die.  Now it seems things are not quite so desperate, at least while the money is still flowing into HAART, but I dare say, I understand your feelings and can only tell you that we must all seek balance, however that is accomplished.

Your work at NIH is priceless, and what is going to be learned from this research will change the science of AIDS, and not just the face.  Keep that, and hold it close, because when we submit to studies, we must have some peace that the knowledge gained will in some way help in a pandemic with very few bright spots. 

Remember, LTPNs are one of those bright spots, and you certainly can take that one home.  It is something you were given as a true gift, and you are utilizing that gift with generosity, and with love, so who could beat you up for that.  Skip the negatives, and just take the positives out of this experience.

Love,

OzPaul:
Hi David

Thanks for the very thoughtful and thought provoking thread !

I too feel a bit like a lab rat, a very thankful lab rat at that. I shuttle between Australia and the USA twice a year to participate in 3 different studies, 2 of which I believe you are in as well. I am always most humble & grateful to God to have made it so well for so long. Having said that I do know that this status as an LTNP could change any day, thus each healthy day is a gift and a blessing.

I always find the staff at NIH, Harvard and the UNSW to be very grateful for our participation and the efforts we make to contribute to science.

I do indeed feel separate in a way from other HIV-ers yet have never had a whiff of negativity displayed towards me here at the forums because of my LTNP status.

One Forum member Zephyr, here has written a beautiful and moving essay called 'Partially Positive' which is about our shared common, though unusual experience as an LTNP.

It's great to have you here as a new voice at the Forums.

All the best
Paul

Lis:
I love you already!!

there are things that i envy about you and this bug, but i gotta tell you... the waiting is HELL.. i imagine that you always wait for the other shoe to fall.. that shit could change any time...  I found out in 86 and didn't get an OI until 2002 ... I thought that i was  free and clear..... but there was always that part of my head that told me to not be so sure...  I pray for your continued health...

lisbeth

mark54:
back before the bug was identified my doctor was jerry gropman in boston.  he had trouble getting patients to give him the sweet white sample he really wanted.  i always was able to fill the cup.  well those days are gone.

also they took lymphnodes. is that still done? probably not.  i heard the distribution list for that, sounded like every researcher in boston got one.

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