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Author Topic: LTNP: Life as a Lab Rat  (Read 4842 times)

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Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
LTNP: Life as a Lab Rat
« on: May 01, 2007, 11:51:44 AM »
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
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: LTNP: Life as a Lab Rat
« Reply #1 on: May 01, 2007, 01:49:25 PM »
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,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: LTNP: Life as a Lab Rat
« Reply #2 on: May 01, 2007, 06:25:32 PM »
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
« Last Edit: May 01, 2007, 06:40:45 PM by OzPaul »

Offline Lis

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  • Posts: 595
Re: LTNP: Life as a Lab Rat
« Reply #3 on: May 01, 2007, 08:03:03 PM »
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
poz 1986....

Offline mark54

  • Member
  • Posts: 26
Re: LTNP: Life as a Lab Rat
« Reply #4 on: May 01, 2007, 09:27:40 PM »
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.

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: LTNP: Life as a Lab Rat
« Reply #5 on: May 02, 2007, 12:47:10 PM »
Thanks, all, for sharing your reflections on the matter.  Let me hit a few things in random order....

On 'tude from other pozzies for being an LTNP...... No, not in these forums, there's enough other 'tude going to need to show such disunity among the ranks.  The friction comes in more real-world settings for two reasons:
1.  because I have not had and am unlikely to suffer an OI or a "natural progression" of the disease, my science and observation-based opinions on treatment and health are invalidated (though I did meds for 8 years); and
2.  because I recognize my value to research and don't want to mess it up by my own carelessness, I have chosen to avoid high-risk activities with HIV+ and last-known-neg partners alike.

On the "gift" of freaky genes...... Sure, I'll take what I've been given over countless other genetic anamolies.  My point about not seeing them as a personal "gift" comes from a contemplative Buddhist belief system.  Geners are an arbitrary assignment of characteristics from my parents, not a divine reach into scrambling my physiologic basis.  Any pain that I experience is from unmet expectations created over my genes, behaviours, events, and other people.  Being free of that pain while remaining awake and unaltered is a challenge.....  That those genes may be a gift to others is another matter--meeting the expectation of sharing them, as long as I am not harmed in the process, may provoke a lot of thought on my part, but it is preferable to the pain of wondering "what if I did not share?"

Peace,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline bear60

  • Member
  • Posts: 4,104
Re: LTNP: Life as a Lab Rat
« Reply #6 on: May 03, 2007, 08:02:25 AM »
Quote Paul: " 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 will certainly agree that being a LTNP is full of anxiety....worrying about stuff like when and if the shoe will fall, waiting for the next blood tests, trying to keep a positive attitude about everything in the face of all the deaths of friends and lovers.
May 2 was national  anxiety disorder awareness day....and there were advertizements on NPR to get evaluated for the disorder.  I already know I have it, so what.
The fact that my partner has full blown AIDS gives me a life and death stake in HIV.  Sometimes I think I am the one who does all the worrying.
Poz Bear Type in Philadelphia

Offline zephyr

  • Member
  • Posts: 459
    • Zephyr L.T.N.P. Foundation, Inc.
Re: LTNP: Life as a Lab Rat
« Reply #7 on: May 07, 2007, 01:46:15 PM »
Hello David,

I'd like to respond to your query of other LTNP's in regard to how often (and where) donations have been made for scientific research of our small and unique group. It has been my pleasure (and duty, I might add) to contribute whatever I can to further the research since 2004, when I joined Partners AIDS Research, Boston.

Diagnosed July 1992, HIV+ 1856 CD4

Research Affiliations:

October 2004   12 vials whole blood, shipped overnight express to Dr. Bruce Walker, initial enrollment to the LTNP Study, Boston

May 2005         12 vials whole blood, vaginal secretions, saliva secretions, and 20 tissue biopsies from the rectum (sigmodoscopy) to the Mucosal & GUT Study,
                      Barbara Shacklett & Richard Pollard, M.D.'s, U.C. Davis, California

December 2005  12 vials whole blood, personal visit, Partners AIDS Research, Dr. Bruce Walker, Boston

February 2006    DNA samples sent to Human Genome Project, via Partners AIDS Research

April 2006         12 vials whole blood, extracted from my person and donated to the LTNP Study, Steven Migueles & Mark Connors, M.D.'s, NIH



June 2006        Apherisis, 2 billion white blood cells donated, LTNP Study, Steven Migueles & Mark Connors, M.D.'s NIH (shared this procedure,
                      literally, with my kindred-brother, Paul (chefpaulmichael) at the same time). Also, informed that a 'genetic chip' was commencing.

January 2007    12 vials whole blood, personal visit, University of San Francisco, Dr. Steven Deeks, SCOPE Project, LTNP Study, San Francisco

May 2007         12 vials whole blood, personal visit, and donated 20 tissue biopsies from the 'gut' (endoscopy) to the GUT Study, Dr. Prindeville,
                      UC Davis, California

  On May 29th, I will once again depart to visit Boston, this time to undergo an apheresis to donate yet another 2 billion white blood cells.

  In September this year, arrangements have been made to once again visit the NIH to contribute yet more cells to their study.

  And, thanks to Paul for mentioning my May 2006 article, "Partially Positive", wherein I shared my personal thoughts and views on this 'surreal' status, and the issues that surround becoming involved in these important and ground-breaking endeavours.

My best to your continued involvement, David. Thank you for such an interesting view on all of this.

Zephyr

modified for a correction to UC Davis contributions, May 2005, not May 2006 (as originally posted.)

« Last Edit: May 07, 2007, 01:52:34 PM by zephyr »
"It is character that communicates most eloquently."

Offline drerp3

  • member
  • Posts: 2
Re: LTNP: Life as a Lab Rat
« Reply #8 on: May 09, 2007, 06:22:39 PM »
Zephyr and Chefpaul, I just wanted to let you guys know that I am alive.  Zephyr I love you unconditionally.  To the gentlemen who wrote LTNP thank you for expressing your feelings.  I have always known that I was different yet the same.  More blood please(smile).

Offline redhotmuslbear

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  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: LTNP: Life as a Lab Rat
« Reply #9 on: May 26, 2007, 04:44:51 PM »
>>SIGH!!!....<<


My next visit to NIH for contributing to their LTNP protocol has finally been scheduled for June 6.  I'm being very proactive with them, largely to be able to work their schedule around mine, not vice versa.  Sent copies of my 78-week (of no meds) labs directly to the lead investigator back in April, then played phone tag with him, then waited til after a brief trip to Alaska to engage the study coordinator.  Dr. Migules was delighted by my enthusiasm, as I'm extra-special with a B44+ HLA allele that does not appear to protect me on its own, though it's linked to very aggressive immune responses (lucky me.... allergies from hell).  Yesterday at 5:15pm we got the appointment set.

As last June's attempt at apheresis was torturous and the responses of the blood bank nurses and the then-coordinator demoralizing, the doc and the current coordinator are arranging for a "venous assessment" and a physical exam.  For a big muscular guy I don't brim over with large accessible veins except in my overdeveloped calves.  Based on the assessment, they'll will attempt apheresis.  If they still can't get the double canula needle in me, they will just take whole blood.  Joy!

Cheers,
David

P.S.  Thursday was the 9th anniversary of "getting the news" for me.  After over a decarde of living in denial, yet storing away knowledge from friends who battled HIV, I was ready to hear a positive ELISA test and went for the Western Blot, then viral load and CD4 assays., with a mix of resignation and dutifulness. 

"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline CaptCarl

  • Member
  • Posts: 1,114
  • Located in the Palinsville subdivision, JesusLand
Re: LTNP: Life as a Lab Rat
« Reply #10 on: May 27, 2007, 11:13:47 AM »
David,
   A great post about an interesting subject. I think that I may qualify as an LTNP, but am not sure.... Up until a year ago, I wasn't on meds. I have been poz for 19 years now, no OI ever, no real HIV related problems to speak of. I have frequently wondered about the testing of those of us who are still doing well, going into our third decade of infection. It seems surreal that I'm still around sometimes. I also agree with your Buddhist way of looking at the genetics as nothing more than the way things are. I had read a thing a few years back, that people with far northern European and Scandinavian ancestry tend to live a lot longer without developing AIDS than those from southern Europe and the Mediterranean areas. They had no explanation as to why. My dad is Swedish, mostly, and mom is Italian, so I guess I got lucky.
   I too sometimes want to feel normal again. But if by normal you mean what it was like to be negative, I cannot remember what that was like as it's been so long.... Unfortunately, this is our "new" normal. Keep up the good health and attitude, amigo!
  Capt.Carl
The only thing I can do straight is shoot..

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: LTNP: Life as a Lab Rat
« Reply #11 on: May 28, 2007, 12:02:09 AM »
...I think that I may qualify as an LTNP, but am not sure.... Up until a year ago, I wasn't on meds. I have been poz for 19 years now, no OI ever, no real HIV related problems to speak of. ....I had read a thing a few years back, that people with far northern European and Scandinavian ancestry tend to live a lot longer without developing AIDS than those from southern Europe and the Mediterranean areas.


Carl,
Congrats on making it this far.  As for your being an LTNP, one would initially ask why you have been on meds--did you numbers take a dive?  Or were you just wanting to do what the cool kids were doing? <G>  Even if you went on meds in the absence of another health issue impacting your immune system, you would likely be branded a "slow progressor" and some molecular immunologist somewhere would like access to your blood.

As for a Nordic longer time for progression to AIDS, I don't recall such data.  Still, Northern Europeans and pockets on the British Isles carry the CCR5 delta-32 mutation in higher proportions than do other people, thanks to the "Black Death" and its favoring the survival of people with those genes.  One delta-32 gene from one parent suggests longer survival, while two means you have the virus licked

Again, while you may be counted out of some research due to being back on meds, discussing your background with a knowledgeable specialist and investigating the genetic testing may give you and the scientific community new knowledge.

Cheers,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline CaptCarl

  • Member
  • Posts: 1,114
  • Located in the Palinsville subdivision, JesusLand
Re: LTNP: Life as a Lab Rat
« Reply #12 on: May 29, 2007, 10:00:48 PM »
David,
   The reason I went on meds is because my doc felt it was time due to the numbers from my labs. For a long time i resisted going on meds because my gut feeling was that since meds work for a certain length of time before the virus becomes resistant to them, it seems to me that they should be used when they are needed to bolster our systems, rather than before we really need them.    I don't really cotton much to the idea of taking meds of any kind if I am healthy. Last time I checked my labs results was when my doc said that I should consider going on meds and they were something like a cd4 count of 225, and a VL of around 50,000. I had also noticed over the years, that a number of people I knew seemed to deteriorate after they started their meds, which seems a bit backwards to me. If you want to see scary numbers, I'll tell you this, when I went on my meds, my doc had also run a viral load test for the hepatitis B, and that number came back at over a billion. Thankfully though, she didn't tell me that until they went down significantly.Lab numbers generally don't affect me, but that would likely have given me few moments of panic.
   I have an appt. with Elaine (my Doc) on Thurs. afternoon. I'll ask about being studied, I truly believe that it's the right thing to do. Also, say a quick prayer or whatever fro me on Friday. That's when I go in to get my treatment for the cancer. The treatment consists of a large needle being poked directly into little Timmy the Tumor and injecting him with alcohol. :( Can you say ouch boys and girls? I know you can. This time at least, I'll be under full anesthesia, :-\ rather than just conscious sedation like last time.... Welcome to the Marquis de Sade School of Internal Medicine LOL.

Capt.Carl (whose Liver is already cringing in anticipation)
The only thing I can do straight is shoot..

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: LTNP: Life as a Lab Rat
« Reply #13 on: June 28, 2007, 08:34:56 AM »
I almost wet myself this morning on listening to a voicemail with results fron NIH at 88 weeks off meds:  viral load 101(yes, just three digits, no K after it), CD4 786 (39%).  My primary will surely flip when I fax the hard copy to him next week, and my HIV specialist will go nuts, too.

Now, if I could just have all the friends back from the last 25 years....

-DP
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: LTNP: Life as a Lab Rat
« Reply #14 on: September 04, 2007, 10:44:29 AM »
Tick-tock, Tick-tock....

25 days and counting til I pump my arm for labs to mark 104 weeks or 2 years off meds.  The docs and I are expecting continued high CD4s and near undetectable viral load, and we're doing our best to keep anything else that might sicken me at bay--like using prophylaxis of zithromycin in spurts against ear infections or anything else trying to inhabit my body.  I'm also consuming more than usual amounts of garlic, ginger, and turmeric (in curries), and yogurt for their beneficial properties, while limiting exposure to strange genitals and mouths <G>.

As soon as I get the numbers back at the beginning of October, NIH and Elita Controllers will want their bottles of blood.
« Last Edit: September 04, 2007, 10:48:58 AM by redhotmuslbear »
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

 


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