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Author Topic: My long draw out story. (warning it is very long)  (Read 5844 times)

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Offline appleboy

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  • Just me!
My long draw out story. (warning it is very long)
« on: July 14, 2006, 06:29:20 PM »
Hi,
I am Bill and have HIV.  Finding out I had HIV was not easy as numbers were confusing and so on.  I made a post earlier and possibly started some confusion so I figured I would say hello and give you my story which took me awhile to gather all the information from my copies of medical records.  I have to say when I first found out I did not want to belive what I was hearing and in June 2006 I finally accepted it.  You are given a hand to play it is not how bad the hand is but how we play it!

August 2004
HIV Test Neg

Feb 2005
Thrush
Elisa Poz
Western Blot indeterminate
GP 120/160 Present
P65 Present
P55 Present
P51 Absent
GP41 Absent
P40 Present
P31 Present
P24 Absent
P18 Absent
CD4 187
VL 750,000 (the test goes no higher)
Referred to ID Dr.

2/21/2005
Resistance Testing None Found
CD4 168
VL 750,000 (again top of the chart)

3/11/2005
Started Sustiva and Truvada

4/11/05
CD4 705
VL 26,300

5/9/05
Switched from Sustiva to Viramune (Dizzy, anger and Super Vivid Dreams)

6/01/05
CD4 798
VL 744

8/22/05
CD4 655
VL Undetectable

9/14/05 to January
I moved from Texas to Delaware for a new job with less stress.  I had set my first appointment with a new ID Dr in January after New Years and decided again in December I wanted to do another HIV test.  I went to the Health Department and did the standard blood draw wait 2 weeks blood test.  I go back 2 weeks later and I was given a Negative Test.  I decided ok that is odd so I went to the local AIDS agency and did the rapid oral test the very next day and it was negative.  January came and I talked to my new ID Dr. explaining I wanted what I considered the normal way of being told I have HIV (Reactive ELISA and Poz Western Blot).  He agreed that it would be ok to stop meds to prove to me that it was there.  I stopped my meds in the order of which one had the longest half life to the shortest (half life the amount of time it takes your body to rid of the medication).

2/9/2006
CD4 635
VL 331,321

5/03/2006
CD4 205
VL 750,000 (again a chart topper)
ELISA Reactive
Western Blot indeterminate (The bands are different than the first)
GP160 Present
GP120 Equivocal
P65 Absent
P55 Absent
P51 Absent
GP41 Absent
GP40 Absent
P31 Absent
P24 Equivocal
P18 Absent

6/01/06
CD4 153
VL 750,000 (Why do I have to be a chart topper? :-) )
Resistance Testing None Found

Started meds again towards the end of June and this time I went back to Sustiva and Truvada in hope of Atripla which was just announced.  This time the side effects of Sustiva have been much less than the first time.  It has been in the last few weeks that I have finally accpeted being HIV poz.  You know what?  I am still the same me I have not changed one bit. 
Thanks for taking time to learn about me!
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline lydgate

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Re: My long draw out story. (warning it is very long)
« Reply #1 on: July 14, 2006, 06:42:01 PM »
Very interesting. This might be one for the textbooks. 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 appleboy

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  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #2 on: July 14, 2006, 06:46:01 PM »
Jay,
I thought so too but no Dr seems to think it is odd or out of whack.  I think so still but I think there is enough numbers to prove I have it.  I even tried getting in touch with some of the folks at John Hopkins but no such luck.  I can deal with it as I know there are many other people that deserve their attention more than I.
:-)
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline otherplaces

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  • Posts: 398
  • Mutant Super Hero
Re: My long draw out story. (warning it is very long)
« Reply #3 on: July 14, 2006, 07:08:51 PM »

Wow, that is freaky. The evidence is definitely there that you have hiv, but those two neg. tests in a row? How's that work? I think that when doctors don't understand something they just act like it ain't no big deal.

I had a neg. test with a 6,000 VL right before I seroconverted. It's a really damnful place to be in. You know that you're probably poz, but it's hard to let go of some hope that it was all wrong. I've had it all confirmed at this point...especially my rising VL. But more so my body just feels off most days. Not like anything I've ever experienced. That made me believe more than the tests.

It sounds like you have adopted a good perspective.

be well,
brian

Offline angels4kelly

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  • Posts: 305
  • IT JUST IS!!.....OKAY!
Re: My long draw out story. (warning it is very long)
« Reply #4 on: July 14, 2006, 07:17:34 PM »
Bill, I am sorry you had to go through all of that confusion.
It must've been hell for you.
I'm just so happy that you found this forum!
There is so much support here and alot of people who are very smart on the subject of HIV.
I'm sure you'll learn alot.
Oh! Then there are the funny people so you'll get a few really good laughs also!
I do believe laughter is a really great medicine*(I can't say that I think it's "the best".)
GLAD  YOU'RE HERE  ;D
Peace & Love,
Kelly
                 


         

                   
POSITIVE SINCE-10/1990
CD4-610
CD4%-29.3
VL-UNDETECTABLE
VIREAD,VIRACEPT, EPZICOM

MOST RECENT...
10/9/2006
CD4's-714
CD4%-30%
VL-Undetectable
DIAGNOSES POSITIVE 10/90
SAME MEDS, VIREAD, VIRAMUNE, EPZICOM.

SHOOT FOR THE MOON! YOU MAY MISS,
BUT YOU'LL LAND IN THE STARS :)

Knowing others is intelligence;
knowing yourself is true wisdom.
Mastering others is strength;
mastering yourself is true power.
 
Failure is not in falling down,
but the staying down

Offline appleboy

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  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #5 on: July 14, 2006, 07:20:04 PM »
Yeah I am glad I found this place.  I love cheering people on as it helps me pass postive (no pun intended) vibes.  Otherplaces I have been told I am freaky  :o !
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: My long draw out story. (warning it is very long)
« Reply #6 on: July 14, 2006, 07:21:26 PM »
Freaky is a good thing :)

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Teresa

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  • Posts: 1,753
Re: My long draw out story. (warning it is very long)
« Reply #7 on: July 14, 2006, 07:28:41 PM »
Hi Bill,

Sorry for all that you went thru. Had to be tough on you mentally. But Im so glad that you are here.

WELCOME to the forum family!

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

Offline appleboy

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  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #8 on: July 14, 2006, 07:32:31 PM »
Mentally at times is has gotten bad.  I pretty much decided from day one that life is what we make of it.  Sometimes we get dealt things that we don't want but hey what can you do?  Keep on living!
You guys and gals are great!
:-)
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline otherplaces

  • Member
  • Posts: 398
  • Mutant Super Hero
Re: My long draw out story. (warning it is very long)
« Reply #9 on: July 14, 2006, 11:28:09 PM »

Appleboy,

I've been considered freaky for many many years at this point...you're in good company :)

brian

Offline appleboy

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  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #10 on: July 14, 2006, 11:41:29 PM »
YAY!  I am not alone!
 ;D
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline lydgate

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  • Posts: 1,022
  • Virgin, can't drive
Re: My long draw out story. (warning it is very long)
« Reply #11 on: July 15, 2006, 12:21:20 AM »
Well, after doing some reading: apparently there's a small subset of samples which produce an indeterdimate/inconclusive Western Blot result. Yours would appear to be one of those samples.  There's another confirmatory antibody test, less commonly performed and more expensive than the WB, the Indirect Immunofluorescent Antibody (IFA). I don't think you need further confirmation of your status at this point, but you could I suppose request an IFA from your doc, if he's willing to order one. Jay

« Last Edit: July 15, 2006, 03:10:53 PM by lydgate »
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 appleboy

  • Member
  • Posts: 344
  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #12 on: July 15, 2006, 12:29:11 AM »
Well I do have insurance and I do have a 1,200 deductable.  But since I just had to have my appendix removed (this past sunday) I think I have met it for the year in less than 2 weeks.  So I guess I could ask.  At least it would be a final closing and pure assurance that it is indeed there.  I will have to give that some thought!
Thanks Jay!
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: My long draw out story. (warning it is very long)
« Reply #13 on: July 15, 2006, 12:49:58 AM »
ouch @ appendix! You are up and posting? Holy crap, superman. Save some for the little people, why dontcha?

Holy crap :)

But yeah, I would look into that other test. And for what it's worth, HIV treatment, even monitoring and lab work, tends to be pricey. You will, I submit, meet your deductable every year.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #14 on: July 15, 2006, 01:04:17 AM »
Superman No, Wonder Woman Yes!
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline southmetro

  • Member
  • Posts: 20
Re: My long draw out story. (warning it is very long)
« Reply #15 on: July 15, 2006, 01:13:37 AM »
It can be hard to accept that you have this bug. To this day I'm not quite sure how I got it as I never came in contact with body fluids and only did what many here would say is safer (nothing is totally safe) things..... but the tests don't lie, we are pos. Good luck, it looks like you respond well to meds and should be <50 VL soon!
Pos 2/2004       
Date       CD4  % VL
02/05/04 411 27 277K
04/05/04 507 31 327K
05/03/04 528 32 81.5K
07/05/04 497 27 272K
10/06/04 401 30 109K
01/06/05 493 22 128K
03/07/05 607 27 217K
08/08/05 397 24 123K
11/28/05 345 25 47.8K
01/19/06 419 23 18.1K
03/06/06 371 28 70.8K
Started meds 04/28/06 Sustiva & Truvada
05/01/06 391 20 8090
05/31/06 450 20 131
06/08/06 VL 88
07/31/06 415 26 <50
09/21/06 574 30
11/16/06 498 32
02/12/07 609 35
05/16/07 532 28
08/13/07 652 34
11/0

Offline david25luvit

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  • Posts: 1,409
  • Member since March 2005
Re: My long draw out story. (warning it is very long)
« Reply #16 on: July 15, 2006, 02:21:41 AM »
Hey Bill aka Wonder Woman....


                              Indeed this would seem like one for the books.  I remember my first test came back inconclusive and of course I had to take another.  It took four weeks to finally get an answer.  Six months earlier I tested negative....but it wasn't a shock.  Somehow I knew I was positive...as if I could sense the alien virus inside me.  Welcome to the family...Wonder Woman huh?
 Hmm well you should fit in well with the other super heroes ::)

Big Hug! :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline frenchpat

  • Member
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  • Love your friends, don't eat them.
Re: My long draw out story. (warning it is very long)
« Reply #17 on: July 15, 2006, 03:16:40 AM »
Hi Bill,

just landed here myself, the place seems full of interesting people, and everybody cares, not matter what colour your cape is ;).
I find that nice.

VERY WARM WELCOME

Pat
People have the power - Patti Smith

Offline water duck

  • Member
  • Posts: 397
Re: My long draw out story. (warning it is very long)
« Reply #18 on: July 15, 2006, 03:50:26 AM »
Hi Bill,

........in June 06, i finally accepted it........
well good for you, your healing can begins and all these confusions stop.

WELCOME

Siang

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: My long draw out story. (warning it is very long)
« Reply #19 on: July 15, 2006, 07:36:26 AM »
Hi Bill,

This wasn't long at all, and I even read every word of every post.  If you want long, wait a bit, and we will come up with a discussion that will test the servers.  ;)

Welcome to the family, and I trust you are settling in nicely.  Like Jonathan, I am in shock that you are up and contributing after your very recent operation.  I guess you truly are Wonder Woman.  By the way, where can I get me some of those bracelets?

In Love and Understanding.
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 appleboy

  • Member
  • Posts: 344
  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #20 on: July 15, 2006, 08:46:44 AM »
:-)  You folks are wonderful!  I am indeed thrilled I found a place here.  As for the bracelets you will need to go to the Bermuda Triangle to the island that my family lives on or you can use cardboard tinfoil and markers and make your own!
AppleBoy
aka Wonder Woman!
« Last Edit: July 15, 2006, 08:51:24 AM by appleboy »
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Re: My long draw out story. (warning it is very long)
« Reply #21 on: July 15, 2006, 03:19:21 PM »
Hey Wonder Woman,

Just found out that the Home Access Express HIV-1 kit uses the IFA and not the WB as its confirmatory test. Since you will test positive at the Elisa stage, they'll perform an IFA. And it costs $44. So that's probably the cheapest and most convenient option. Here a link:

http://www.holistichealthtools.com/aids-hiv.html

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 appleboy

  • Member
  • Posts: 344
  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #22 on: July 15, 2006, 04:05:11 PM »
you going to hold my hand when I have to poke myself?  :-\
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #23 on: August 15, 2006, 11:13:29 AM »
UPDATE               UPDATE               UPDATE               UPDATE
I finally decided to start asking for answers to my questions regarding my HIV.  Sunday night I filled out a form for a referral to the University of PA for an appointment with someone on their Infectious Disease Department.  This morning I got a call and I have an appointment with the Medical Director of Immunodeficiency Program for the university!  This appointment is in late October which is perfectly fine with me.  I hope to finally get some answers about.
What Strain and Subtype?
Why did I go from Neg to AIDS?
Why did I test negative with 2 diffrent tests and 2 different labs in December 05?
Why do my Western Blots not match and is that caused by meds?

I am sure I will come up with more as I am getting copies of medical records ready to send to them. 

YAY!
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline Eldon

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Re: My long draw out story. (warning it is very long)
« Reply #24 on: August 15, 2006, 03:39:46 PM »
Hello Bill, it is Eldon. It is good to hear that things are going well with you. Just keep up the good work.

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #25 on: September 07, 2006, 09:01:28 PM »
So the Dr at the University is looking over medical records.  She emailed me the other day to say that well it does not make sense and that she loved challenges.  So hopefully I am finally going to get some answers about my HIV soon.  It is so cool to have a Dr. take time to really listen and show a real interest.  I suggest we all aim for that in our healthcare.  I will let you  know what is going on as it all unfolds.
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline alive2

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  • i guess im having a good day
Re: My long draw out story. (warning it is very long)
« Reply #26 on: September 10, 2006, 10:46:05 PM »
well appleboy,welcome to madness,im glad i was told from the first test i was positive,if i would have been told negitive 2 times in a row i would have used the term quacks very offten at the docs.this type of confussion would have made me walk out and not gone back,good thing because i might have gotten my wife infected,and she kicks my ass enough,let alone if she was infected.and just so you know your story wasnt that long,more medical jargen than anything,but thats ok,welcome,take care

Offline appleboy

  • Member
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  • Just me!
Re: My long draw out story. (warning it is very long)
« Reply #27 on: January 27, 2007, 09:32:26 PM »
UPDATE UPDATE UPDATE
Ok so here is the last few e-mails with my Dr.  I am sorry I have updated you guys and gals.  Here goes:
I have bolded what she typed and mine are plain

>Hi Bill, I hope all is well with you.  (well, except for those lab
>results). In fact I'm still accosting more people for their thoughts.
>One additional thought (not sure if I discussed with you yet) is that
>perhaps when you got infected, the depletion of the CD4 cells was so
>rapid and severe that it wiped out the ones that would have allowed a
>specific response to the gp120 or gp41 (thereby making the western blot
>consistently indeterminate). 
>
>But stay tuned: I mainly wanted to make sure I got info to your ID doc
>down in Delaware in time for your visit, but I can't remember when the
>visit is? 
>
>Let me know, and take care!

>



I guess your ears were burning!  I was thinking about you.  I go and see
Dr. C*** on February 9th 2007.  Please don't hurry to get info by that
time if the information is not flowing.  I never expected the answers to
be just right there and just knowing I got you on my side has been enough
to quill my quest for information (for now).  I think you mentioned
something about the depletion of CD4 cells.  I guess I am confused why my
HIV (which seems to be a standard non-odd version) made my CD4 count do
what it did.  I think that goes back to your last e-mail about my immune
system just could be slightly different.  If my CD4 cells depleted that
fast it would seem that after I started HAART it would have been enough to
allow me to make antibodies after I stopped meds to see what would happen
unless it did excactly what it did at the start it dropped so fast that it
could not respond with anti-bodies.  I hope I am making sense and
providing enough information to help you understand where I am not
understanding.  Again I cannot thank you enough and I honestly wish I knew
how to thank you.  Before I close how do I find out when my next
appointment is for the blood draw for the research group?
Mucho Gracias!

Hi again!

Your question makes perfect sense, and I think that's exactly what we're all wondering: it's been reported that someone who's treated in acute infection might not develop all the antibodies to get a postive western blot. But after reexposure to the virus, (particularly since the immune system had been doing well), your immune system should have made antibodies. Reasons could be: your own defective immune system (but it would have to be defective in a really really precise way, ie have just a pretty negligible defect, which only mattered when we did this very precise western blot on you).  Or, as a consequence of the virulence (strength) of the virus,+/- a quirk of your immune system, you could have lost all of your cells that would give the antibody responses to gp120 or 41. 

Suffice it to say, that you have inspired some of the smartest people I know to investigate this further (Ian Frank, Guido Silvestri, Mike Betts), and even (if we/they can come up with something explanation other than asinine) publish it.  No, not in GQ (yet!), in a medical journal...if that's ok w/ you, OF COURSE.

I don't know when we need you to come back in for blood (traditionally it's every 6 months, but we might need more blood sooner).  I know they are interested in looking at your  HIV-specific cellular and humoral immune responses, which they may need more blood for. Stay tuned - they can do a lot with what they have. Any chance you might have any blood "banked" anywhere? Were you involved in any databases/clinical trial screenings when you were in Texas?  It would be unbelievably helpful to see what your responses might have looked like. I can check w/ the labs where you had your clinical specimens done to see what they have.

In any case, a lot of what I say here keeps referring to the possibility that your immune system might be defective, or that you might be a rapid progressor; I just want to reassure you that if either of these seem to be the case, that you should not worry, as long as you stay on HAART. 

That's it for now, and I will keep giving you updates as we work through this!

Thanks so much for being such a willing "subject"!





WOW!  Almost 2 years and I finally have the smart people agreeing with me!  I am suddenly feeling smart myself!  Let me go down your e-mail slowly and make sure I answer what you need and to throw out any new or remaining questions I have.  I hope you enjoy my random humor thrown in between!
Reasons could be: your own defective immune system (but it would have to be defective in a really really precise way, ie have just a pretty negligible defect, which only mattered when we did this very precise western blot on you).  Or, as a consequence of the virulence (strength) of the virus,+/- a quirk of your immune system, you could have lost all of your cells that would give the antibody responses to gp120 or 41. 
Is there a way to figure out virulence (strength) of a strain of HIV?  Does this depend on the HIV strain alone or does it include factors of the host (me) that it has infected?  Now here is a question that I think I have asked but want to ask again.  Since, it seems I have lost or not made antibodies to my HIV could it be that I have lost antibodies to other things I have been given shots for (ie Flu, Hep A and B, and Pneumonia)?  Reason I ask this if there is some odd quirk with my Immune System I wonder if looking at that would point at a possible larger problem.  I hope you are following my train of thought again on this.  I also ask this because if I have lost those antibodies then I could possibly be a sitting duck (QUACK!)  for the things those shots prevent.

Suffice it to say, that you have inspired some of the smartest people I know to investigate this further (Ian Frank, Guido Silvestri, Mike Betts), and even (if we/they can come up with something explanation other than asinine) publish it.  No, not in GQ (yet!), in a medical journal...if that's ok w/ you, OF COURSE.
Litte ole me inspired some smart people?  Nah, I could have not done it without you!  Trust me I have prayed hard that someone would listen and well God was listening again!  Please tell Frank, Silvestri, and Betts THANK YOU!  No GQ? well, that just runined my dreams of a Photoshop makeover (knifeless, painless and cheap)!  Can the journal be typed on a Mac?  You know Macs are going to save the world!  OF COURSE IT IS OK to write a journal article on me.  Do I need to sign anything?  Do I need to hire people so I can tell people "have your people talk to my people"? (You really don't have to answer that one just I have always wanted to say that).  I feel like I am on an episode of House MD except the Dr/s is 100 times nicer!

I don't know when we need you to come back in for blood (traditionally it's every 6 months, but we might need more blood sooner).  I know they are interested in looking at your  HIV-specific cellular and humoral immune responses, which they may need more blood for. Stay tuned - they can do a lot with what they have. Any chance you might have any blood "banked" anywhere? Were you involved in any databases/clinical trial screenings when you were in Texas?  It would be unbelievably helpful to see what your responses might have looked like. I can check w/ the labs where you had your clinical specimens done to see what they have.
We could run a pipe from my house to the lab that pumps blood 24/7!  Let me know if you need more I have some to spare if needed.  I know they should get a great laugh when looking at my humoral immune responses HA HA HA!  As for the banking of blood I am pretty sure I have never had any banked.  I have given blood to the Red Cross but that was back in High School and College (Late 90's) before I came out of the closet.  I have had surgery before but never needed a transfusion for those therefore never banked any blood.  I was not involved in any databases/clinical trials in TX.  I think they were more concerned in telling me I have HIV/AIDS without answering my specific questions of why (again thank you this has been a long time coming).  You/they have my permission to check with any previous lab or anything like that in the search for my old blood.

In any case, a lot of what I say here keeps referring to the possibility that your immune system might be defective, or that you might be a rapid progressor; I just want to reassure you that if either of these seem to be the case, that you should not worry, as long as you stay on HAART. 
Can I get a new immune system if it is indeed defective?  I think I may be way past the return period!  I would assume (notice the first 3 letters of that word I am trying to avoid looking like one!) if I am a rapid progressor the research they are doing might shed some light on as to why I am rapid progressor?  I am not honestly not worrying.  As my mom would say If my name is not in the obituaries then I guess I am doing fine!  I am taking my meds eating my Atripla once a day.  I will work on getting the rest of the medical records  (where they left off to current) from my current Dr. when I see him in Feb unless you or the team needs them sooner. 

Again, Thank you so much!  I know there are many times in your daily life that you do something great and don't get thanks from the paitents you work with so here from the bottom of my heart Thank You!  I know my mom is tickled pink that I found you she tells me all the time "that you are a determined man and if you want to know something you will find it or stumble over the answer in your quest to know!"  So I hope with all that you have a much needed warm fuzzy!  Since it is almost Christmas I wish for you and your family a most awesome Christmas!  Spend it with your family and soak in all the wonder it brings.  I also wish for you a bright and joyous 2007!
Talk to you soon!
« Last Edit: January 27, 2007, 09:58:00 PM by appleboy »
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
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Offline appleboy

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Re: My long draw out story. (warning it is very long)
« Reply #28 on: January 27, 2007, 09:41:19 PM »
Ok so I decided that I need to compress that last post into the most important part about seeing the Dr at the University of PA. 
Suffice it to say, that you have inspired some of the smartest people I know to investigate this further (Ian Frank, Guido Silvestri, Mike Betts), and even (if we/they can come up with something explanation other than asinine) publish it.  No, not in GQ (yet!), in a medical journal...if that's ok w/ you, OF COURSE.

So basically she is saying that there is something odd about my HIV and that they want to study it further.  They want to look closely at my immune response etc.  If they can come up with something other than something stuipd or foolish publish it in a medical journal.  So finally after 2 years of asking and asking what is up with never having a Poz Western Blot and actually having one Negative test in the middle I might acutally find out.  I have to say that was the most thirlling news I have had in a long time since finding out I have HIV.  I will keep you all up on it as I get more information.
Appleboy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline whizzer

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Re: My long draw out story. (warning it is very long)
« Reply #29 on: January 27, 2007, 09:55:46 PM »
Appleboy,

I too have never had a positive WB.  In fact, mine has progressed over a year from two  reactive bands, GP 120 and GP 160, to only the GP 160 band being detectable.  I'm waiting for the two year mark to do another Western Blot, just for shits and giggles.  Not that it makes a damn with regard to my status, but more for academic purposes.

I had DNA PCRs and RNA PCRs to confirm the diagnosis.  In addition, my CD4s were quite low, though my VL was never nearly as high as yours.

Since starting ARVs a year ago, my CD4s have gone from 260 to 1123, and my VL from 60,000 to <50.

Odd thing, the immune system.  Shame we don't know more about it.

Offline poet

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Re: My long draw out story. (warning it is very long)
« Reply #30 on: January 28, 2007, 04:58:01 PM »
Bill, I am so glad to have found you posting this after I noticed you posting in another thread: welcome!  At first I didn't realise that you had started this particular thread so many months ago, so thanks also for bringing us up to date.  If it helps grasp how this is possible, without being able to answer your particular situation which remains a curiousity, I had what was clearly acute retroviral syndrome in the Summer of 1984 (mono. while failing the mono test).  When I was able to meet with a then expert in NYC, he announced without a beat that I had had a bad case of the flu.  Ok, in 1984, it was the early days and there weren't phrases yet like a.r.s.  Fortunately, I didn't doubt what it was and I can only hope that no one these days would have this told to him or her.  Glad to have your voice and your situation here.  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 appleboy

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Re: My long draw out story. (warning it is very long)
« Reply #31 on: January 28, 2007, 06:29:02 PM »
Hey Poet,
Yeah this post was started quite awhile ago but this whole thing has taken some time.  I had to spend more time getting the Dr to go you know what that is odd.  So hopefully things will start moving a little faster.  I really hope that something good comes out of this for others just not me.  Like it was said in the post before yours we still don't know lots about the immune system maybe this can shed some light on it.
Appleboy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

 


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