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Author Topic: You may be a LTNP (Long Term Non Progressor) too !!  (Read 26445 times)

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Offline OzPaul

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You may be a LTNP (Long Term Non Progressor) too !!
« on: June 04, 2006, 02:57:41 PM »
Hi everyone

This picks up from a thread started by Zephyr at the old AM site.

There is an on going study of Long Term Non Progressors (LTNP'S) at Harvard/MGH in Boston. It is run by Bruce Walker and his team. Both Zephyr and I  are what is termed by Bruce Walker as LTNP 'elite controllers'.  Both Zephyr and myself are in this study and a couple of other AM members are  enrolled in this protocol as well.

For this study LTNP's are indicated by never having taken any HAART medications, very low or undectectable viral load and normal range of T-cells over course of infection as well as never having had any OI's for a period of at least 7 years or more.

Below is listed the link to find out more about the study as well as contact info.

http://www.mgh.harvard.edu/aids/hiv_elite_controllers.asp

IMPORTANT UPDATE- Please look at the 'Elite Controllers' thread here at Clinical Trials. The study has been changed and more peolpe may qualify for the newly expanded study. Cheers, Paul...  24th of July

If you are a LTNP (or know of someone who may be) Please contact the folks at this study. The aim is to unlock HIV and hopefully come up with a vaccine (therapeutic).

Cheers
Paul
« Last Edit: July 24, 2006, 04:03:35 AM by OzPaul »

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #1 on: June 09, 2006, 12:53:27 AM »
Do you know whether they're interested in someone who's been infected for only about 2 years?  My VL is undetectable, and I'm not on meds, but I don't know if you can talk about "long-term" with someone like me.
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Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #2 on: June 09, 2006, 01:33:52 PM »
Hi Bobino

I think that the study criteria call for a minimum of seven years Poz. Check the other thread here under clinical trials, that may help you to know yes or know. There is also a contact phone number at that thread for their study.

You may also want to look further on the web for studies you may qualify under. If you look up (Google) , NIH clinical studies HIV, you will see many possibilities of links that may help you determine if you would be eligible for any studies at the NIH. You may also ask your clinic or Dr. if they know of any studies. Those are the paths that I took to find studies that I was appropriate for inclusion.

Good luck and it's wonderful that you're looking to be a part of finding an answer to the mystery of HIV  !!

Cheers
Paul

Offline Elitecontrollersresearch

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #3 on: June 30, 2006, 10:49:54 AM »
Hello! My name is Rachel and I am a research assistant working with Dr. Bruce Walker on the Elite Controllers study (formerly called the "Long term non-progressors study") at Mass General. I just wanted to chime in here about our study. There is no longer a 7-year requirement to be eligible for the study. The participants we are looking for are people between the ages of 18-75 who have maintained viral loads of less than 2000 without medications for at least one year. The study involves a one-time blood draw that can be performed at your local doctor's office. If you think you might be eligible, or if you have any questions, please feel free to call (617-726-5536) or email me (rrosenberg2@partners.org) at any time.

Thanks so much for helping to spread the word! Have a great 4th of July weekend!

Offline riverlassie

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #4 on: July 20, 2006, 09:49:38 PM »
My husband is signed up also. 20 years positive and he's healthy as a horse !!!!!!!!!!!!! :)
Worrying is like a rocking chair. It gives you something to do but doesn't get you anywhere.

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #5 on: July 22, 2006, 12:37:16 PM »
Hi Lassie...

Glad to hear that your husband is so healthy after 20 years! Thanks for chiming in, as Paul and I are always interested in knowing about another participant in these important studies!

And, welcome to the Forums, too!

My best,

Zephyr
"It is character that communicates most eloquently."

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #6 on: July 23, 2006, 05:15:48 AM »
Hello Riverlassie

Welcome to the forums !!! It's good to know that there are more folks enrolled in this study. Please feel free to share you story either here or at  the 'Living with' section.

Take good care
Paul

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #7 on: July 27, 2006, 02:07:33 AM »
I signed up for this study too.  Assuming my doctor confirms my VL readings, I should be good to go. 
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Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #8 on: July 28, 2006, 02:34:54 AM »
Hey Bobino

That would be great news if you qualify for this study. Please keep us up to date on the outcome.

Cheers
Paul

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #9 on: July 29, 2006, 06:12:13 PM »
Will do.  I have been in contact with Rachel Rosenberg, who is coordinating the study.  She's been very helpful.  As soon as I know something more, I'll post again.
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Offline lydgate

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #10 on: August 06, 2006, 05:39:02 AM »
Paul and Zephyr,

I'll be contacting Rachel Rosenberg/Dr. Bruce Walker as well, to see whether I can participate in the study. Hoping I can.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #11 on: August 06, 2006, 07:35:32 AM »
Hi Jay

That would be very good news if you qualify for the study.
Please keep us posted.

Cheers
Paul

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #12 on: August 08, 2006, 01:23:06 AM »
Jay,

I've just sent you a pm about Rachel....hope you get it!!

I am thrilled about your being a potential candidate for the protocol!!

We'll all be awaiting news from you, and Bobino!

Love,

Zephyr
"It is character that communicates most eloquently."

Offline pozbiguy

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #13 on: August 16, 2006, 03:38:02 PM »
Hi Guys,
 I am an LTNP for over 10 years now with never a viral load and higher tcell counts than non- infected people.
 I am so glad that I found this sight because I have never in 10 years met or talked with another LTNP_ and this includes when I used to get my health care from Dr. Ben Davis at MGH.
 It makes me feel so good to know that there are other "freaks or odballs" as I have been told and felt like out there that are like me.
 

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #14 on: August 17, 2006, 12:22:55 AM »
Hi Pozbiguy

That is wonderful news for you to be sure !!! I too felt isolated for years even with this wonderful miracle.
There are several of us here at the Forums. We are part of the larger Forum Family and I have always felt most welcomed by everyone. Please feel that you have a bit of sanctuary here.

If you might be interested in the study at Harvard/MGH please follow the link provided above and contact them. They would be most glad to include you in the study if you meet all the criteria.

Welcome to the Forums !!!

Paul

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #15 on: August 25, 2006, 12:59:45 AM »
Hi everyone,

Just wanted to let you know that I contacted Rachel Rosenberg and discovered that I qualified for the study.  So, on Tuesday when I was at my doctor's office for my regular quarterly review, the nurse took 10 tubes of blood from my arm, and by now those tubes should have made the trip from San Francisco to Boston.  Not sure what will come of this study, but I'm glad I did it.  It feels good to be doing something, even if it's small.

Also, when I told my doctor about this study, he informed me that a doctor named Jay Levy at UCSF is doing similar research on "elite controllers."  So, I called him too, and guess what?  I'm now going to be participating in *his* study.  Anyone in the San Francisco Bay Area who is a long-term non-progressor/elite controller and who is interested in participating in such a study can contact Dr. Levy at (415) 476-4071.  I understand that they're still looking for participants.

Slightly off topic, but still on the subject of studies, I was screened for the leptin study at San Francisco General, but I didn't qualify.  That means that for the present I won't be able to do anything personally to advance the cause of lipodystrophy research, but I told them to keep my name and number and to call me if they initiate other studies for which I might qualify.

Honestly, my intention is to participate in any and all studies for which I qualify and that I can fit into my schedule.  I really think it's important if we're ever going to beat this horrible disease.

John



Suivons les rivières
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Restons en colère
Soyons vigilants

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #16 on: August 25, 2006, 02:47:39 AM »
Hey John

That's great news that you qualify for the 'elite controller' study. I agree with you that's in important to volunteer for studies where we can, if that suits us individually.

The other big news with this study is that our own Zephyr ( Loreen ) appeared with Bruce Walker from Harvard at the International Aids Conference in Toronto. They appeared together at a news conference to publicize the study.

Congratulations to Zephyr for standing so tall and out and proud in the world !!! Her name and words were in the print media all over the globe. Good on ya Zephy.

I'm headed back to Boston from my home in Australia to participate again in the study in  November.

Paul

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #17 on: August 28, 2006, 11:07:39 AM »
John, dear,

This is great news to find out you are eligible to join Dr. Walker's study...I'm catching up on threads here on our Forums, and have just now learned you've been accepted!! Thanks so much for taking the time to investigate this important work, through our combined efforts we will forward the cause.

Thought I'd share a photo with everyone of Dr. Walker and I on the Podium at IAC, during our Press Conference to announce the search for more participants...what an honor to be sitting next to this incredible man!

Keep us posted on your journey, honey.

Love,

Zeph

[attachment deleted by admin]
"It is character that communicates most eloquently."

Offline zephyr

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    • Zephyr L.T.N.P. Foundation, Inc.
Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #18 on: August 28, 2006, 11:17:04 AM »
Excuse me, hit the reply button too fast....

Jay, thought I'd ask for an update of your situation...have you heard anything from Rachel Rosenberg yet?? Thinking about you!

And, pozbiguy...Welcome to our Forums, and to our growing 'family' of LTNP's. I only know too well those emotions you have lived with about "am I the only one" (who is so different...). I experienced them and more through 12 years, before POZ Magazine published their article on Dr. Walker's group in Sept/Oct. '04 issue. As soon as I read it, I knew, finally, someone was 'looking' at us, and the rest is history.

Should you become involved in Partners AIDS Research group, this will mean that we are 10 from the AM Forums alone!

Keep us posted, ok???

Love,

Zephyr
"It is character that communicates most eloquently."

Offline lydgate

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #19 on: August 28, 2006, 01:41:29 PM »
Hey Zeph,

I left a mesage for Rachel Rosenberg last week but haven't heard back from her. I'll try emailing her today. Though I imagine that if I do qualify, I would be in the Viremic Controllers arm rather than the Elite Controllers arm -- two VL tests done, 70 copies and 53 copies. Let's see what happens.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #20 on: August 28, 2006, 07:34:03 PM »
Hi there, Jay,

Good to hear from you! Don't give up on Rachel...since our Press Conference at the IAC, I understand that she has been absolutely INUNDATED with phone calls from around the world by individuals and medical professionals about enrollment in the study...combined with all the calls and emails from the press (if my home is any indication of same), she is one busy gal.

With those numbers, you are defintely in the running for Viremic Controller, that's for sure, dear.

Stay well, keep strong,

Love,

Zeph :-*
"It is character that communicates most eloquently."

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #21 on: August 28, 2006, 07:44:34 PM »
Hi Jay

That would be great news if you qualify for the study ! Please keep us posted. As Zephy said, our numbers are growing, which will in time I hope, help the cause.

I know that Rachel  has been really busy fielding ALOT of  enquiries about the study since the press release and news conference at the IAC. Please have patience as I know that she is keen to sign up as many candidates who qualify for the study as they can.

Thanks to you for stepping up and volunteering !! That's how our success in this may be measured, one individual at a time. We're each a piece in the puzzle.

All the best
Paul

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #22 on: August 28, 2006, 09:30:45 PM »
Hi Zeph,

Many thanks for the kind words.  I'm now scheduled to see Dr. Levy next Tuesday for evaluation for his elite controller study, so it looks like I'll be "double dipping." 

Seriously, I think volunteering for research is the absolute least that I can do.  I really do plan on volunteering for every study that I can get into.  If more people volunteer, we'll learn more about this awful disease.

Gonna sign off now because I'm just back from my second Sculptra treatment and the anesthetic is wearing off. 

John

Suivons les rivières
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Offline bear60

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #23 on: September 04, 2006, 01:55:09 PM »
I'll see if I can be in this study; as long as I dont have to travel I will be ok.
Poz Bear Type in Philadelphia

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #24 on: September 04, 2006, 11:37:29 PM »
Hi bear....

The Partners Group will provide you/your physician with everything needed to ship blood samples...travel back to Boston is not a mandatory event!

Keep us posted on what's happening, Paul and I are always interested in everyone's story.

I recently learned that up to 10 prospective enrollees per week have been located, since the appeal went out @IAC...terrific news, indeed!

All the best,

Zeph
"It is character that communicates most eloquently."

Offline sammysf

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #25 on: September 05, 2006, 06:49:28 PM »
Hello all, I'm a 30 year old SF resident and have been positive seven years now with no meds. I have been enrolled in these studies as well as one with Steven Deeks at UCSF. I guess I'm also considered a viremic controller, it's quite bizarre. The strangest line I have ever read in the last seven years is in this article originally in the LA times:

"Researchers believe it is "unlikely" that elite or viremic controllers can infect others with HIV, the Times reports."

http://www.medicalnewstoday.com/medicalnews.php?newsid=46714

Here is the LA times article:

http://www.latimes.com/news/local/la-me-elites6jul06,0,7217065.story?coll=la-home-headlines

I think that publishing this time of information can be problematic. I for one did not know what to do with it. I will continue practicing safer sex of course. But on the other hand, it does rest my mind a bit being that I am in a sero-discordant relationship and condoms have broken in the past.

What do you long term non-progressors out there make of it?

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #26 on: September 06, 2006, 12:02:23 AM »
Just thought I'd post and say that I met with Dr. Jay Levy today.  I'm a bit ashamed to admit that I hadn't heard of him before.  Apparently he's one of the leading HIV researchers in the country, and I didn't even know his name.

Anyway, I'm being evaluated for the study and will be seen again in November.  He also gave me the name of a doctor doing lipodystrophy research at UCSF, so I've now contacted him too.  As I said, I'm planning on joining just about every study I can.

By the way, does anyone know what the actual definition of an "elite controller" is?  I know it's someone who keeps the virus at undetectable levels without drugs, but I'm wondering if that isn't true of most people soon after infection.  In other words, don't most people go through a period in the first years after infection in which they're basically healthy and are controlling the virus well?  Just curious if anyone knows . . .

John
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Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #27 on: September 06, 2006, 11:21:48 AM »
Hi Gentlemen,

I am heartened by the increasing numbers of participants to these important studies, and want to extend my personal thanks to both of you for enrolling.

Sammy, I read those articles and have to admit to a shock as I read the reference to our not being infectious...it is a hypothesis, I'm sure, relating to our low VL's indicating low activity of the virus within our blood-streams. However, like you, I will never be 100% sure that we are not, and would always protect any sexual partner, no matter what the researcher's say.

I was also stunned by the remark that it is doubtful that we would ever 'progress' to advanced levels of the disease. Again, as they are not exactly sure why we suppress this virus, how can they extend such certain opinions on this? I advise caution, and take these comments with a 'grain of salt', if you will.

John, the article Sammy links us to (above) from the LA Times from July 6th this year is a very good read. In it, you will perhaps find an answer to your question re: definition of an 'elite'.

Dr. Walker is quoted in a piece published by CNN (August 16th) as saying: "...the difference between long-term non-progressors and 'elites' is clearly defined by how much virus they have circulating in their blood." Here is the link to that:

http://www.cnn.com/2006/HEALTH/08/16/aids.elite.reut/index.html

Based on my experience, and my labs, I have never registered a VL in 14 years. Eligible participants to the study must have remained beneath a <50 VL.

Hope this helps!

Good luck to both of you!

My best,

Zeph
"It is character that communicates most eloquently."

Offline blondbeauty

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #28 on: September 06, 2006, 12:13:28 PM »
There is a study (i will post it if I find it again) that shows that people with viral loads under 1.500 copies per ml. are non infectious. But I agree with you, Zephyr, in not exposing anyone.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #29 on: September 06, 2006, 06:53:32 PM »
Hi everyone

Just a note of clarification on Zephys reply.  The Harvard study the include so-called 'elite controllers' like Zephy and myself AS WELL AS Viremic controllers with copies under 2,000. Of course there are other strict criteria for the study so go to the link at the beginning of the thread to see the web site with the particulars.

The study is called the 'Elite Controller' study though has become more inclusive of it's subject base.


Peace and Love
Paul

Offline lydgate

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #30 on: September 06, 2006, 07:57:08 PM »
Zeph and Paul: Just wondering if you guys have been tested with ultra-ultrasensitive VL assays -- those with lower detectability thresholds (20, 10, or even 5 copies)?

On a different note: my university hospital clinic tests for CD4 but not CD8, claiming that the latter number plays no role in treatment decisions. Should I insist, next time I go in for blood work, that they check CD8 counts as well, just to have a fuller clinical picture?

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #31 on: September 06, 2006, 09:55:59 PM »
Hi Jay

As far as I know I've not been tested with the ultra-sensitve test neither at NIH, Harvard/MGH nor at UNSW in Sydney.
I do get my cd 4's as well as cd 8's checked though I'm not sure of why. I know that I've been getting both checked for many years. There is certain science on this, perhaps someone more knowledgeable on this can reply. Zephy, do you know ?

Cheers
Paul


Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #32 on: September 06, 2006, 10:07:16 PM »
Hi Jay,

During a personal conference with Dr. Stephen Migueles at the NIH (National Institutes of Health) this past June, he shared with me a rather interesting article co-authored by himself and Dr. Mark Connors, Primary Investigative Physicians for the LTNP Studies.

I say interesting because it flies in the face of your medical professionals opinion that CD8's have not been involved in suppression of the HIV virus:
the article is entitled: 'HIV-specific CD8+T cell proliferation is coupled to perforin expression and is maintained in nonprogressors'.

You can reference this scientific piece by accessing: www.nature.com/natureimmunology and search for November 2002, Volume 3 No 11,
published online 7 October 2002; doi:10.1038/ni845.

The opening paragraph reads: "It is unclear why immunological control of HIV replication is incomplete in most infected individuals. We examined here the CD8+T cell response to HIV-infected CD4+T cells in rare patients with immunological control of HIV. Although high frequencies of HIV-specific CD8+T cells were present in nonprogressors and progressors, only those of nonprogressors maintained a high proliferative capacity. This proliferation was coupled to increases in perforin expression. These results indicated that nonprogressors were differentiated by increased proliferative capacity of HIV-specific CD8+T cells linked to enhanced effector function. In addition, the relative absence of these functions in progressors may represent a mechanism by which HIV avoids immunological control."

As I understood Dr. Migueles in our private discussion, and as he drew me a sketch of what they see happening with my CD8's, the level of proliferation (or multiplication) my cells undergo in fighting off the HIV virus is like watching several football teams pour out simultaneously onto the field...all at once.

Hope this helps to answer your question. I would recommend that your lab slips have that CD8 box checked, definitely.

My Best,

Zephyr

"It is character that communicates most eloquently."

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #33 on: September 06, 2006, 10:12:49 PM »
Oh, yes, the ultra-assay question:

As far as my labs go, all of my Viral Loads are done by Ultra-Ultra Sensitive Assays. Have been since I joined the Harvard study in Oct. '04.

And, I found some of my notes from the June 15, 2006 conference that Paul and I had with Drs. Migueles & Connors re: CD8's:

"We had a revealing discussion about CD8's and their relationship of 'support' to CD4's, and the re-focus of science upon them and their apparent inhibition of viral infection"

Take Care,

Zeph
"It is character that communicates most eloquently."

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #34 on: September 06, 2006, 11:47:50 PM »
Thanks Zephy for that !!

I too would have had the ultra ultra test done at Harvard, I just forgot.

Thanks also for the notes from our meeting with Drs. Migueles and Connors. It's hard for me sometimes to capture the science behind the research that we're taking part in.

Ciao Bella
Paul

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #35 on: September 07, 2006, 12:22:18 AM »
Zeph,

Thanks so much for the info.  And congratulations on no VL for 14 years.  That's incredible.  It's great that you're in the study, because someone with your ability to control the virus must be exceedingly rare.

As for me, I had a VL immediately after diagnosis, and it was around 5,000.  The next month it was down around 1,000, and then it dropped again three months later to around 500, and then went undetectable.  It once rebounded to 291, and then went back to undetectable.  It's been undetectable now for almost two years.  So I don't know if I'm actually an "elite controller" or not, since I think it's probably normal for people to have good viral suppression early on in the course of infection.  I suppose that only time will tell.  For now, I'm thanking my lucky stars for my good fortune and hoping I'll be able to stay this way.

And no matter what the doctors may think about people with undetectable VLs, I'd never expose anyone else to this disease.  My partner is negative, and I'd never risk him getting the virus.  I don't need to share my stupidity with anyone else, thank you.  Especially not with the man I love.

Once again, thanks for the links, Zeph.  You're a big help.

John

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Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #36 on: September 07, 2006, 12:28:22 AM »
Zeph,

I've got one more question that you might be able to answer.  The CNN article that you linked to said that HIV kills most people within two years if they're not treated.  Is this true?  I thought that most people went for many years before they began to develop symptoms, even if they weren't "elite controllers."  Most estimates I heard were in the range of 10 years from infection to development of symptoms.  Maybe I've been laboring under a misconception.

Anyway, just wondering . . .

John

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Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #37 on: September 07, 2006, 01:50:44 AM »
Hello,

Wanted to post the updated link for the Elite Controllers Study for everyone:

http://www.massgeneral.org/aids/hiv_elite_controllers.asp (There are underscores after the words 'hiv' and 'elite')

I went to it tonight and it is so much more comprehensive than the original! It will answer many of the questions being posed in this thread, including the difference between Viremic Controllers (#3.1, under Section 3, Eligible Controllers) and Elite Controllers (#3.2, under Section 3).

John, reading your kindly provided info, I would venture to say you are most definitely a Viremic Controller!  You are maintaining an undetectable VL, per the definitions of the study. As for the data in the CNN piece, the journalist for Reuters definitely didn't do their homework on that one.
I can't seem to find a name for that individual from Reuters, either. Hmm, good eye you've got there! You are not the one laboring under a misconception, John...just another indication of the need for education, isn't it??

Glad I can help..anytime!

Smiles,

Zephie

modified to indicate 'underscores' after 'hiv' and 'elite' in the web link.
« Last Edit: September 07, 2006, 01:54:56 AM by zephyr »
"It is character that communicates most eloquently."

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #38 on: September 09, 2006, 08:57:03 PM »
Hi everyone

Just wanted to give you an update.

My next trip to Boston for the Harvard study is in place. I leave my home in Australia on Sat. November 11th and fly Melbourne to Sydney then San Fransisco and on to Boston (32 hours) I thought  it best to take the big journey in one go and rest on Sunday before I take part in the study on Monday and Tuesday.

I'm thrilled that I can go twice this year. I was able to get a fairly cheap ticket on United, cross Pacific.

I wasn't able to go to the NIH for their study this time as my out of pocket expenses for that study average about $400 ( hotel, food, taxi, etc.). Too much for me I'm afraid.

I'm humbled that I can keep participating in these and other studies. It is a small way that I, as a 25 year LTNP hope to contribute to a breakthough ( vaccine, cure).

In Peace and Love
Paul

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #39 on: September 10, 2006, 06:44:55 PM »
Dear Paul,

Your untiring commitment to these studies never ceases to amaze me!

That you would travel such a distance to donate more blood/cells/tissues to the 'new' Consortium proves how special you truly are!!

With much love,

Zephie :-*
"It is character that communicates most eloquently."

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #40 on: September 10, 2006, 11:52:58 PM »

I have another question for those of you who may fall into the "elite controller" category.  Do elite controllers have measurable VLs immediately after infection?  I always thought that during the acute infection stage, the newly infected person would have a high viral load, which then drops as the body adjusts to the presence of HIV.  Is this true of elite controllers as well?  Or do they just have undetectable VLs even in the acute stage?

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Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #41 on: September 11, 2006, 02:47:59 AM »
Hi bobino,

I can only speak for myself and my history on this question. Viral Loads, or PCR/RNA tests were developed 3 years after my diagnosis in 1992.

So, there would have been no way for my doctor and I to measure my VL at the 'acute infection' stage.

Good question, though. Now you've got me thinking, it's definitely something worth seeking an answer to.

Paul, do you know??

My best,

Zephie
"It is character that communicates most eloquently."

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #42 on: September 11, 2006, 05:44:18 AM »
As I was tested positive in 1985 (way back then) there were no viral load tests, just a bad prognosis.
Once the viral load tests became available I was always tested at the lowest (undetectable) viral load level  by the standards of the time. As far as the science and current thinking I don't know what to say.

The term 'elite controller' may have to do with the number of years of being an undetectable LTNP, so in that regard time will tell. I can't say if the scientists have a consensus on that or not, but the number of years undetectable etc, seems to be an important factor in the description of 'elite controller'.

If one were to be able to have a discussion with one of the researchers/scientists about these questions, that would be helpful of course. Short of that and with what info (limited) we can offer here at the Forums, I have spent countless hours 'googling'  ' LTNP, Elite controller' for answers. Having said all that, I don't think there is a definitive answer but perhaps some consensus.

I don't know if that helps, I hope so however.

All the best
Paul

Offline bobino

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #43 on: September 12, 2006, 12:30:26 AM »

Zeph and Oz,

Thanks so much for the responses.  I'm going to be seeing Dr. Levy again in a couple of months, so I think this is a question that I'll ask him.  I'm curious, I suppose, because at least part of me doesn't believe that I'm an elite controller.  I just think it's early in my disease process.  But I'll ask Dr. Levy.  If anyone should know, he should.

BTW, thanks for all of the work you do and the information you provide on this forum.  This has been a great resource for me as I've struggled with HIV.

John

Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #44 on: September 12, 2006, 07:35:44 AM »
John

You're quite welcome !!!

I have tried, (Zephyr too) to be of help in your quest for answers. We have been on a similar path though different journeys. I hope that Jay Levy can provide some answers to your questions.

I have been quite fortunate to have talked with Bruce Walker at Harvard and Stephen Migueles and Mark Connors at NIH while taking part in their respective studies. I would say that the one thing we all have in common is a passion, commitment and dedication to finding some keys to unlock the mystery of HIV and hopefully come up with a cure or vaccine. That is why I particpate in these studies.

Thanks for joining us on this uncertain journey !

I'll keep you updated on anything I learn.

All the best
Paul
« Last Edit: September 12, 2006, 08:16:44 AM by OzPaul »

Offline yowsaa

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #45 on: October 10, 2006, 04:57:12 AM »
Just thought I would post a tidbit in here.

Wife was dx+ late spring 2000 becuse of my + test. Her cd4's have ranged from ~1300 to 1650 now. VL never been detectable. Never any meds. Early 50's. What I find strange is her cd4's have trended higher with time. Weird. (Maybe I married a martian  :o

In fact her ID doc recently ran another test for anti bodies = positive.

Me, meds almost fron the get go.

We live in ontario CA , PM's are welcome from any interested researchers\parties.


Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #46 on: October 11, 2006, 06:29:12 AM »
Hi yowsaa

Welcome to the forums!


It sounds as if your wife might qualify for this particular study. If you go to the link I provided at the beginning of the thread there will be contact details for this study.

In my experience I sought out research study options for my participation. You ( and your wife) may want to ask your Dr. if they know of appropriate studies to participate in.

Good luck and keep us posted on what happens.

Paul

Offline zephyr

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #47 on: October 12, 2006, 12:27:35 AM »
Hi yowsaa,

Of all places, I am here to tell you I will be flying into Ontario airport on Nov. 20th.

If you would be interested in connecting with Zephyr, please let me know via pm.

I think your wife is an Elite Controller and I would love to meet you both.

Adieu,

Zeph
"It is character that communicates most eloquently."

Offline yowsaa

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #48 on: October 12, 2006, 01:48:01 PM »
Just talked to Rachael re the study. When I told her about wifeys cd4 counts she said "WOW" lol.

Printed some study info off for her to read tonight after work and is off tommorow, so hopefully will decide to say yes and call Rachael to join.

PM sent zephyr.
« Last Edit: October 13, 2006, 01:57:32 AM by yowsaa »

Offline OzPaul

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Re: You may be a LTNP (Long Term Non Progressor) too !!
« Reply #49 on: October 13, 2006, 01:53:26 AM »
Hi Yowsaa

That would be great if your wife would like to join the study !!

Please feel free to pm me as well. I've been in the study for 2 years. If your wife is interested, I can also pass along info on other studies that she may qualify for.

FYI, I tested positive in 1985 and have likely been poz since 81 and well all these years/decades. I am humbly, very blessed indeed. Miracles can and do happen.

Cheers
Paul in Australia

 


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