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#426457 - 02/25/13 05:44 PM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
Oh, I dunno, the shoes are very Wizard of Oz. Man, go figure he wants to be Dorothy. Oh wait, she got 'em off the Wicked Witch of the East, right? Now I get it!

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#426468 - 02/25/13 07:45 PM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
bodyguard8367 Offline
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Registered: 05/16/12
Posts: 1159
Loc: ""
""


Edited by bodyguard8367 (02/26/14 09:14 PM)
Edit Reason: SILENCED

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#426519 - 02/26/13 12:55 AM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
Lancer Offline
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MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
I dunno G. I think a tasteful hat helps.



btw, don't know if you've heard, there's a GAY scandal in the Vatican now. I'm truly shocked. smirk Well, now we know where all the robes, jewelry and great art came from.

Obviously I'm getting too uppity and it's time for a bloodletting....

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#426552 - 02/26/13 11:04 AM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
Lancer Offline
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MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
Got new results! (Enuf of the Pope hijacking the thread, tho' it's my own fault I suppose). A couple days late for the Oscars, but here's the numbers on two weeks' treatment. I just about had a cardiac and I suppose a doctor's office is as good a place as any. I'll settle for a good cry later. I was told the results were often dramatic, but didn't expect this:

Viral Load 113 (not a typo, down from 87,100)
CD4 83 (up fr 33)
CD4 pctg 4.6 (up fr 2.5)

Next regular bloodletting in a month (however, with the 8-hour bloodletting marathon sometime in between). They expect the results from today's draw to indicate I'm undetectable.

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#426636 - 02/27/13 01:01 AM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
crazy gecko Offline


Registered: 10/04/12
Posts: 309
I don't know much about HIV and I don't really understand those figures, but it seems to be a spectacular improvement? If so, then it's awesome! Really happy for you smile
_________________________
I guess what I'm trying to say
Is whose life is it anyway because livin'
Living is the best revenge
You can play
-- Def Leppard

My Story, Part 2

My blog

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#426641 - 02/27/13 01:34 AM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
Lancer Offline
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Registered: 07/13/12
Posts: 901
Loc: Florida
Thanks Gecko! One reason I keep the thread going is to maintain my sanity. The other is education for survivors affected by HIV. One reason I got here was, following the CSA, my adolescent mind figured my only value was as a sex object and I carried that with me for years.

The best explanation I've found on CD4 and the like:
http://aids.about.com/od/aidsfactsheets/a/cd4percent.htm

Lymphocites are white blood cells and they fight off infection. CD4 cells are lymphocites that initiate the immune response in other cells (CD8). Roughly, if the alarm system (CD4) is knocked out, no 911 call goes out to the police (CD8). Or, no immune response to infection.

CD4 count is typically 500-1600. CD4% is the percentage of lymphocites that are CD4 cells, typically about 40%.

Viral load is a measurement of HIV copies in blood, if you will, the number of bad guys. Obviously, the fewer, the better. "Undetectable" doesn't mean there's no HIV. It's just the limitations of the test (currently about 50 copies). And it can remain hidden in the lymphatic system, brain, etc. Two good reasons to maintain consistent HAART (highly active antiretroviral) therapy.

Treatment has significantly reduced the number of bad guys. In my case - can't resist math - for every 770 attackers, only one is left...and that's why I was in total shock at the results. The alarm system will naturally start to be fixed (mitosis, if you remember high school biology), communicaton is being restored, and the police team will be able to respond to threats normally. That takes a while, at minimum a year.


Edited by Lancer (03/04/13 07:50 AM)
Edit Reason: More accurate CD4 analogy!

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#426642 - 02/27/13 01:53 AM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
crazy gecko Offline


Registered: 10/04/12
Posts: 309
Thanks! That explains it pretty well. smile
_________________________
I guess what I'm trying to say
Is whose life is it anyway because livin'
Living is the best revenge
You can play
-- Def Leppard

My Story, Part 2

My blog

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#426644 - 02/27/13 03:00 AM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
peroperic2009 Offline
Moderator
MaleSurvivor

Registered: 10/09/11
Posts: 3600
Loc: South-East Europe
(((Lancer))),
even we said that numbers are just numbers I'm more than happy seeing your latest results. Congratulations on being undetectable, I'm sure you are there already wink
And lets hope for further rise of CD4 and percentage wink

I must say that trough this topic I've been very well educated about HIV.

Pope certainly helped to make lessons more funny wink

Pero
_________________________
My story

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#426647 - 02/27/13 06:52 AM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida

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#427314 - 03/06/13 05:20 PM Re: HIV, CSA and New Med Study (Pharma Lab Rat) [Re: Lancer]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
Though I'm pretty much staying off the boards this month, I've reached the one-month point on the new meds and some observations. Yeppers, gonna ramble for the record:

First, the initial additional fatigue seems to have passed. I still get tired, but it feels like I've rolled back the clock several months. It's not as difficult to get things done. Air dam and tires on my 13-year-old Wundercar needed to be replaced. That's actually getting done! I'll enjoy driving again. For that matter, heck, I just trimmed the walk and pruned some bushes not all of them yet and, for once, didn't feel like I needed a break every 15-20 minutes. Yard stuff is important to me.

The comparison I draw is my step-brother who had a severe skiing accident in college. He was in hospital traction for a year and then spent another year learning to walk again on a mostly atrophied leg. That's what this recovery feels like.

I'll get the griping outta the way. I've been reluctant to reveal to people how weak and sick I've really felt. Few people know, for example, I need about 12 hours' rest a day and I'm only good for 4-6 hours' activity at a time. I've done my own minimizing to hide my disability. It's been a real bitch sometimes showering, shaving, getting a haircut, even had to ask a teenager what he's used for acne (Oxy, btw) but, yeah, I have an ego. Downside is that many people don't know how sick I've been...brave face and all that. My worst nightmare has been to see myself as so many friends have been over the years, emaciated and hollow eyes. So I've fought it. I guess I shouldn't be surprised people have therefore been relatively unconcerned about me. I only gave out anecdotal evidence, but few visual clues except to those with whom I'm really close. I want to be treated normally, not like a leper. I'm still processing this.

My only other gripe is, "Oh, so now you're cured?" No, I'm improving. This is gonna take a while. I guess I have no control over others' reactions, but I'm hesitant to really share what a huge change I've been feeling compared to a month ago. After years of feeling lousy, significant parts of my day now feel normal. The constant aches are subsiding. Again, it's not unlike what my step-brother must have felt. "I can walk now?" Well, yeah, but not very fast. "That's okay. Hell, I can walk!"

Nor do I suppose I should be surprised at my hindsight. But I am. And it's not unlike the perspective a lot of us get about how outrageous the fact of our CSA was and/or whatever other abuse accompanied it. Same kinda slap-in-the-face moment.

In the past few years I've had a couple cases of shingles (scars look like KS lesions...ugh...like I need that), fought constant sinus infections, fought fungal infections. Most noticeably, the fungal infections now appear to me to be receding. I'm actually starting to feel like this stuff is going to heal up. More surprising to me though I've always gone by how I feel vs. what the numbers day is just how bad the baseline numbers were. Though the CD4 absolute count is kinda 20th century and the preferred indicator is now CD4 percentage, the baseline numbers were awful. CD4 of 33 (normal 500-1600), CD4% of 2.6% (normal about 40%)...and a viral load of 87,100 (doctors freak out when you approach 100,000). I suppose I was as close to AIDS as one can get without meeting the specific CDC definition. That realization kinda threw me.

The viral load, for all purposes, is now undetectable. I'm keeping my expectations in check because it will take a while for the CD4 to recover, particularly from a baseline that low. Clinicians usually prefer to see a baseline of around 200-350 for best results.

I don't know if it was gruesome fascination or what. In the past month I examined morbidity studies for people with similar numbers, infections. I'll just say it sounded like, if I'd not been able to do the protocol, I'd have continued in a pretty rapid decline. I'm not afraid of dying at all. I'm afraid of what leads up to it (hospitals, tubes, pain, loss of independence). And I'd really miss those things about my life I've come to enjoy...my home, my craft, my hobbies, etc. Given my experience with Dad's passing years ago, however, I've come to feel the human connections don't get severed, they simply change.

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