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Author Topic: Paul's HIV Journey  (Read 2868 times)

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Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Paul's HIV Journey
« on: January 05, 2007, 07:01:34 PM »
Hi everyone

I want to offer an update on my most recent trip to Harvard to participate in their research into LTNP 'elite controllers'.

I was in Boston in November on a visit from my home in Australia. I've been in that study for 2 years. It is one of several studies I participate in on the subject of Long Term Non Progressors. There are several folks here at AM who partcipate in the same or similar studies. These people include Emeraldize, Bobino, Zephyr and Oaktree among others.

A bit of background about myself. I'm 48 and tested positive in 1986 though likely became infected in 81 while living in New York. I'm an American living in Australia in a quiet beach town and my partner and I own and run a Bed and Breakfast. We're in the middle of a very busy summer season. I particpate in  LTNP research in the Harvard study as well as one at NIH and one in Sydney as well. I am an artist and writer and am currently featured on national radio in Australia where I am an essayist writing about life in the country. I am very blessed to have been so well for so long long and this is why I participate in research  which will hopefully lead to a vaccine or cure of HIV/AIDS. I also have bi-polar disorder which has proved challenging though I am well and quite stable on medication.

My latest blood counts from Harvard were undetectable > 50 and cd 4 count of 1024 both of which have remained constant for about 14 years.

Here's a link to the Harvard study for more insight into what they are researching.

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

That's my update. Happy New Year to our AM family.

Cheers
Paul
« Last Edit: January 08, 2007, 06:03:38 AM by OzPaul »

Offline Teresa

  • Member
  • Posts: 1,753
Re: Paul's HIV Journey
« Reply #1 on: January 05, 2007, 07:06:25 PM »
Paul,

Its so nice to learn more about you!

Thank you for all that you do!

Big Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Re: Paul's HIV Journey
« Reply #2 on: January 05, 2007, 08:24:07 PM »
Hi Paul,

Just wanted a clarification. I think the second number you mention is your CD4 count, not VL, right?

Jay
(who's envious of the southern hemisphere summer right now)
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

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: Paul's HIV Journey
« Reply #3 on: January 05, 2007, 09:21:47 PM »
Right you are Jay ! Thanks for calling it to my attention.

As for the weather, it is quite hot and humid at the moment, more like Queensland weather than Victoria.

Cheers
Paul

Offline Basquo

  • Member
  • Posts: 3,254
Re: Paul's HIV Journey
« Reply #4 on: January 05, 2007, 09:37:21 PM »
Queensland, Victoria, Austin...it's Summer everywhere! Unfortunately, mine will end at 1200 Saturday when the next front rolls in.

Paul, I echo the thanks for info about you. I think I knew most of it, but it was nice to read what you wrote of yourself this...

Morning? Evening? F---, even with a BA I cannot read time zones!

As a definite Viremic Controller, and possibly a LTNP, I share your hope.  I've been in one study for Harvard, and am going to market myself to them further.

Best,
Creighton

Offline J.R.E.

  • Member
  • Posts: 7,112
  • Joined Dec-2003 Living positive, since 1985.
Re: Paul's HIV Journey
« Reply #5 on: January 06, 2007, 12:47:18 AM »
Hello Paul,

Thanks for the re-intro, and thanks for keeping us all updated, as to you visits here to the US.Unfortunately there are so many new people  joining us, it's great to let these people know whats going on. Wishing you the best, in the New Year ahead, Once again, thanks to you, and the other LTNP's for all you do toward the  research of HIV/Aids.




Have a great year-------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: Paul's HIV Journey
« Reply #6 on: January 06, 2007, 06:28:16 AM »
Thanks for your update, Paul.  You efforts are an example of what I meant in another thread of men and women who need to be thanked for taking the time and getting involved in research projects.  That you travel all the way you do and in the height of your season means so much!  Of course I envy both your weather (although not the drought I have read about) and close proximity to aussiebum.com products.  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Paul's HIV Journey
« Reply #7 on: January 06, 2007, 04:12:07 PM »
Hi Paul.

I am very happy that your numbers look so great and that you are contributing to studies. I want to let you know that you typing your experience and good results mean alot to me who was newly diagnosed and is going through a hoffic time trying to adjust. For anyone else who is doing very well and is participating is clinical trials and research PLEASE don't hesitate to write your good experiences. You give people like me to not think of death on a regular basis.

I havehope
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline emeraldize

  • Member
  • Posts: 3,343
Re: Paul's HIV Journey
« Reply #8 on: January 06, 2007, 07:20:27 PM »
For anyone else who is doing very well and is participating is clinical trials and research PLEASE don't hesitate to write your good experiences. You give people like me to not think of death on a regular basis.

I havehope

Hello Ihavehope,

I, too, enjoyed reading more about Paul than I knew. Your appeal to others to share their research experiences taught me something this evening. And, if I can steer your thoughts away from death and toward living, if only for a few moments, then that is a worthwhile goal.

I was diagnosed in August 2003 with a CD4 in the high 500's and VL at slightly over 1,000. Since that time, my numbers have shifted only slightly with no statistical significance. I don't take any medications.

Once I understood what was happening physically and tackled the impact of the virus on my mental health, I looked for as many research opportunities as I could find. Like Paul and those whom he noted above and others whom we don't know yet, I have participated in the Harvard study. I am considered a viremic controller. I participate long distance meaning the blood draws are taken at my clinic, I self-consent to be in the study, and the tubes are FedEx'd to MGH's labs. They assure me they'll be in touch again.

I completed several University studies in 2004/5 and am enrolled in a long-term study of the brains of people over fifty with HIV/AIDS. I recently completed an NIH study which is looking at whether a drug named Alethia which is used for rheumatoid arthritis, will have an impact on HIV. NIH requires a six-month break between participation in separate studies. I've already selected the next one in which I'll be enrolled. It will require a biopsy of muscle to be studied. After that, I'll hopefully be involved in another. Every quarter, I get my labs done and each time before learning the numbers I try to prepare myself for the possibility that they could change.

I've decided that as long as I am in this state, I will participate in as many studies as I possible can. I would want someone to do it for me if I were experiencing a greater tangle with the virus. And, since the first poisonous berry was eaten and the resulting story shared, you and I have been helped by the willingness of others to participate in research.

I hope this adds to your stash of hope. We all need to have a stash of hope we can turn to in those moments that creep up on us.

Em

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Paul's HIV Journey
« Reply #9 on: January 06, 2007, 08:05:11 PM »
Hi Em

Thanks for sharing your info. It's great that you particpate in studies like the one you have to help us all achieve a common goal which is to achieve stable good health. Please keep us posted on any good news you wish to share.

Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Longislander

  • Member
  • Posts: 2,486
Re: Paul's HIV Journey
« Reply #10 on: January 07, 2007, 12:31:32 AM »
Paul, thanks for sharing more about yourself. And thanks again, so much, for going through the studies for all of us. 

You too, Em! ;)
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline RobT

  • Member
  • Posts: 319
Re: Paul's HIV Journey
« Reply #11 on: January 07, 2007, 12:53:14 AM »
Paul and Em-
Thanx for participating in the studies to better understand HIV and eventually find a cure for it. I know that that is a long time in the making, but the meds to control it keeps on getting better. I remain optimistic that a cure wud b found in the future.
Paul, thanx for keeping all of us posted on ur experiences. It surely means a lot for more ppl on here that others post their experiences since their infection. I know that I was away for a bit and am glad that I have returned, well here.
This site has given me so much hope and support. It is ppl like u, who have posted ur results/experiences.
Thanx for all that u both have done in the advance of medical research.

RobT


Current meds: Atripla
VL: undetectable
CD4: 630

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: Paul's HIV Journey
« Reply #12 on: January 07, 2007, 01:13:04 AM »
Thanks everyone !!

As I sit here in the little beach hamlet I am reminded of the inter connectedness we share through our humanity and yes, HIV.

Though I don't post much, I read with great interest how our various AM family members are doing around the globe. I've been at AM for one year now and have developed a great fondness for the many voices and stories I read. Regrettfully some of our most loved ( and otherwise) members have stopped posting or taken lengthy breaks. To all the new members, I give you a hearty welcome aboard.

Welcome back RobT, it's great to have you here again !

Cheers
Paul


Offline FiercenBed

  • Member
  • Posts: 183
Re: Paul's HIV Journey
« Reply #13 on: January 07, 2007, 07:03:15 AM »
hey paul....like i said in my post when u were coming over......give me some of those cd4 cells u got....lol

anyway....quick silly question im curious <and angry about>. how did u get in2 the usa w/ hiv? did u have to get some type of special visa? or was the usa 'kind enough' to allow u in for the special research u r doing?

this usa baring hiv travelers pisses me off.

thanx.

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: Paul's HIV Journey
« Reply #14 on: January 07, 2007, 04:40:30 PM »
Hi Fierce

As for traveling to the USA, I am an American citizen with an American passport so I do believe that by law they would have to let me back in to the country.

Cheers
Paul

Offline FiercenBed

  • Member
  • Posts: 183
Re: Paul's HIV Journey
« Reply #15 on: January 07, 2007, 11:00:52 PM »
thanx for the reply.....sorry missed the american part in original post. one more stupid question. bn to sydney a couple of times. and actualy looked in2 moving there. it seemd very complicated. an agency seemed to be required to get a work visa. r there hiv issues w/ residency?
« Last Edit: January 07, 2007, 11:08:51 PM by FiercenBed »

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: Paul's HIV Journey
« Reply #16 on: January 07, 2007, 11:36:03 PM »
Hey Fierce

While Australia does allow persons with HIV to travel to Australia freely, it's immigration rules are very tough. Basically people with HIV cannot immigrate to Australia. Having said that however, people with HIV do immigrate to Australia. Usually one needs a good immigration agent who knows the system in relation to HIV. It is very diificult however. In my case I had to present a compelling case to both the Medical Officer of the Commonwealth and the Dept. of Immigration as to why, as an LTNP, I would be an exception to the general rule that 'a person with HIV' will present  a financial hardship to the taxpayer. It doesn't seem to matter if one has private health insurance and/or assets to offset the potential cost to the taxpayer.

In my case I beat case law (based on being an LTNP). So, I wrote new case law for the Dept. of immigration and the Medical Officer. Yes, one regular person CAN and did beat the big bureacracy. It has taken two years from the date of permanent residency visa application but was allowed to stay and work the entire time.

Australia also has an 'interdependency partnership visa' which is primarily for gay and lesbian couples. This is the way I was sponsored (something the USA does not have). Other ways include family, school, work and income/assets. It's best to get a good immigration agent who can help you through the system. This can and does prove costly though not nearly as costly as in the USA.

Cheers
Paul

Offline fearless

  • Member
  • Posts: 2,191
Re: Paul's HIV Journey
« Reply #17 on: January 07, 2007, 11:45:23 PM »
hey Paul,
Good to hear from you.
And, a big hearty congrats on overcoming the system.
It is a shame the govt uses the fact that our health care system is primarily tax payer funded to refuse people the right to immigrate here. I also wonder if such rulings are applied consistently to different illnesses, such as heart disease, cancer etc? Taking it to an extreme, it would seem reasonable to refuse a smoker the right to immigrate on the same basis ie that they will be a burden on the taxpayer.
Stephen
Be forgiving, be grateful, be optimistic

Offline Eldon

  • Member
  • Posts: 2,664
Re: Paul's HIV Journey
« Reply #18 on: January 08, 2007, 02:24:31 AM »


Hey Paul,

I was just thinking about you and Loreen earlier this week. It is good to hear from you and your army is outstanding to fight the virus. Thanks for sharing. Keep in touch!





"What can I notice right now that makes me smile?"



Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: Paul's HIV Journey
« Reply #19 on: January 08, 2007, 04:09:02 AM »
Hey Stephen and Eldon

Thanks for the good thoughts !

Stephen, I believe that there are several other medical conditions that may exclude one from immigrating to Australia. I think that diabetes and heart disease are big no-no's when trying to immigrate to Oz.

Eldon, our good friend Zephyr/Loreen is doing well. She is taking on some important and challenging advocacy work and has some rewarding personal things going on as well. I for one miss her powerful and eloquent voice here at AM forums. She is but one of several voices who have gone from here. Hopefully they will return one day.

Wishing you all the best Eldon !! and Stephen too. ;D

Paul

 


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