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Author Topic: Been a while so here's my news  (Read 5077 times)

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Offline gemini20

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Been a while so here's my news
« on: August 18, 2009, 12:35:50 PM »
I got my latest blood results this morning and in three months my t-cells, which had been falling since January, have now almost doubled from 368 to 711 (33%) and Iím still undetectable. I hadnít been over 500 since 2000 and last time I was over 700 was way back in 1994 so this was a big surprise. :o

Iíve been back on meds since October 2007, firstly boosted Prezista for 8 months; then boosted Reyataz for 10 months, then switched back to boosted Prezista in April after suspected kidney stones with the Reyataz.

Obviously boosted mono-therapy has worked relatively well for me as Iíve gone from 133 to 711 t-cells (13 to 33%) in just under two years but Iím going to be taking a break from meds now because that is the way I choose to treat my virus.

Before anyone jumps in with their comments accusing me of being irresponsible, I am not recommending my strategy to anyone else but just letting others know that people can and do take breaks from their meds. This will be my 3rd in the last decade and it hasnít done me any harm.

As for the rest of my life I had an incredibly busy 6 months of school talks and am currently enjoying the six week summer break until I start again early in September with at least 35 school visits scheduled before Christmas. I have been writing pieces for Nelson Mandelaís 46664 website (http://www.46664.com/News/emma-cole-gid=6811.aspx) and have been filmed for a documentary which will hopefully be out around World AIDS Day later this year.

I turned Ď40í in June and I decided I would do 40 special treats throughout the year to celebrate so I have been enjoying working through my list, still need to come up with 14 more before the year end Ė tomorrow is a day trip to the Tate Gallery in Liverpool.

I keep trying to get back into the Forums on a regular basis but that still hasnít happened yet so forgive me for yet another fleeting visit.

Best wishes to everyone,

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Online leatherman

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Re: Been a while so here's my news
« Reply #1 on: August 18, 2009, 04:06:07 PM »
WooHoo! That's great news, Emma!  ;D I'm switching to your regimen. ROFL  ;D
I'm so glad to hear all the good news and hope things keep going well for you.

love from me and the boyz
woof, woof, woof
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Been a while so here's my news
« Reply #2 on: August 18, 2009, 08:48:08 PM »
Hi Emma~

I was just thinking about you and wondering how you were doing!  So GOOD to hear about your counts.  I am very happy for you!   :D

~ Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline Snowangel

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Re: Been a while so here's my news
« Reply #3 on: August 18, 2009, 11:50:19 PM »
Congratulations on your numbers and on turning 40.  Sounds like you found a great way to celebrate it.  I was thinking of you too, I am glad to see your speaking has been going well, I had you confused with someone else but I have to remember to think of your screen name and not your real name  ;D

I have seen it a couple of times before, what do you mean when you say "boosted"?

I will definately check out your link later!
Take care,
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline gemini20

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Re: Been a while so here's my news
« Reply #4 on: August 19, 2009, 03:39:59 AM »
Hi Snow -

'Boosted' refers to the Norvir/Ritonavir; it is used in low doses (one or two 100mg capsules twice a day) to boost the levels of other protease inhibitors in the bloodstream. I was taking one norvir and two Prezista only.

Thanks too Mikie and Cindy for responding, nice to know I haven't been forgotten!

Take care,

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline AlanBama

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Re: Been a while so here's my news
« Reply #5 on: August 19, 2009, 11:59:28 AM »
Hi honey

So glad to hear from you, and happy that you are doing so well !

I, for one, would never try to judge you for your healthcare choices.   They are just that:  YOUR choices.   I'm just thrilled it is working out so well for you.

Someone like me, on the other hand, who has taken handfulls of pills for 20+ years is feeling pretty run down;  who's to say I'm right and you're wrong, or vice versa?   It's all a 'work in progress', and as we've said many times, it's a journey we are all on together.

Love & hugs to you,

Alan  :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Giblarry

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Re: Been a while so here's my news
« Reply #6 on: August 19, 2009, 01:19:44 PM »
Hi Emma. 

I'm Gib.  We haven't met, yet.  Nice to read such lovely posts between you and other member.  Congrats on your good reports. 

I just want to say that Norvir is not the only booster out there.  Sometimes AZT is still used for that, though not nearly as often. 

Nice to meet you, Emma. 

Gib

Offline Miss Philicia

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Re: Been a while so here's my news
« Reply #7 on: August 19, 2009, 01:46:19 PM »
AZT can be a booster for protease inhibitors in a similar manner as Norvir?  Do you have a link for this protocol?
"Iíve slept with enough men to know that Iím not gay"

Offline Giblarry

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Re: Been a while so here's my news
« Reply #8 on: August 19, 2009, 04:03:41 PM »
I am neither a clinician nor a researcher.  I am a patient who was boosted with AZT late in my Atripla regimen. 
You need an abstract on that?  You'll need to crack open my brain. 

Gib

Offline Miss Philicia

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Re: Been a while so here's my news
« Reply #9 on: August 19, 2009, 04:08:25 PM »
So basically your previous comment about a booster alternative for Ritonavir was irrelevant, because Atripla isn't a protease inhibitor.  Just to be clear for our other readers who prefer not to have misinformation.
"Iíve slept with enough men to know that Iím not gay"

Offline Robert

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Re: Been a while so here's my news
« Reply #10 on: August 19, 2009, 08:24:46 PM »


hi emma.   

it's me, robert.  So good to hear from you.  sounds like you've had a good summer and about ready for a productive fall. 

I like your style, lady. You keep busy helping others and you're not forgetting to treat yourself in the midst of all the razzle dazzle of of life.

Happy 40th~~

robert
..........

Offline dad1216

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Re: Been a while so here's my news
« Reply #11 on: August 19, 2009, 10:43:08 PM »
Emma,

Your post made me smile   :)

It's been awhile since we e-mailed....we need to catch up

Hugs to you.....

Bob
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline Giblarry

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Re: Been a while so here's my news
« Reply #12 on: August 20, 2009, 03:35:25 PM »
So basically your previous comment about a booster alternative for Ritonavir was irrelevant, because Atripla isn't a protease inhibitor.  Just to be clear for our other readers who prefer not to have misinformation.

Thanks.  Just what we all need.  More nitpicking in our lives.

Offline Miss Philicia

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Re: Been a while so here's my news
« Reply #13 on: August 20, 2009, 03:52:52 PM »
Insisting on scientifically sound information on an internet forum about a chronic, life-threatening disease is now "nitpicking"?  Stunning.  Even more so coming from someone that's been infected for over 20 years.
"Iíve slept with enough men to know that Iím not gay"

Offline Giblarry

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Re: Been a while so here's my news
« Reply #14 on: August 21, 2009, 02:18:15 PM »
Insisting on scientifically sound information on an internet forum about a chronic, life-threatening disease is now "nitpicking"?  Stunning.  Even more so coming from someone that's been infected for over 20 years.

Hate to prick your pompous bubble, but what seems stunning is your fixation on needling me on everything I say.  It says more about you than it does me.  I'm not gonna take your bait for I make it a point never to enter a war of words with an unarmed opponent. 

This site, as I understand it, is not so much about 'clinical proof' as it is our experiences and feelings.  Now, you act like the Big Mama Kahuna in charge.  If so, ban me from this forum.  Otherwise, shut the f**k up. 

Offline Ann

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Re: Been a while so here's my news
« Reply #15 on: August 21, 2009, 02:46:16 PM »
 

This site, as I understand it, is not so much about 'clinical proof' as it is our experiences and feelings.  Now, you act like the Big Mama Kahuna in charge.  If so, ban me from this forum.  Otherwise, shut the f**k up. 


Gib, one thing we pride ourselves on here at the AIDSmeds forums is that mis-information about hiv, its transmission, detection, treatment or anything else pertaining to the scientific medical aspects of hiv  is always corrected. It's one thing to post your own experience, and another to give out wrong information on treatments.

It is not unreasonable for a member to request data from another member to back up any claims made by that member about treatments which are not standard. Using AZT to boost PIs is NOT a standard treatment. The OP was talking about boosted Presista (a PI) when you responded to her about AZT also being used as a booster. It is NOT used as a booster where Presista or other PIs are concerned. Norvir IS.  In fact, AZT is being used less and less these days in ANY capacity.

And as for your "If so, ban me from this forum.  Otherwise, shut the f**k up." comment, that was totally uncalled for. There's no need for such a childish retort to a perfectly acceptable request for you to back up your claims about AZT being a PI booster.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Giblarry

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Re: Been a while so here's my news
« Reply #16 on: August 21, 2009, 04:41:07 PM »
Gib, one thing we pride ourselves on here at the AIDSmeds forums is that mis-information about hiv, its transmission, detection, treatment or anything else pertaining to the scientific medical aspects of hiv  is always corrected. It's one thing to post your own experience, and another to give out wrong information on treatments.

It is not unreasonable for a member to request data from another member to back up any claims made by that member about treatments which are not standard. Using AZT to boost PIs is NOT a standard treatment. The OP was talking about boosted Presista (a PI) when you responded to her about AZT also being used as a booster. It is NOT used as a booster where Presista or other PIs are concerned. Norvir IS.  In fact, AZT is being used less and less these days in ANY capacity.

And as for your "If so, ban me from this forum.  Otherwise, shut the f**k up." comment, that was totally uncalled for. There's no need for such a childish retort to a perfectly acceptable request for you to back up your claims about AZT being a PI booster.

Ann


Fine Ann,

A reasonable request for more information even though I didn't state it as scripture is not a problem or the issue and I did not claim that AZT was a PI booster.  And, I would've elaborated or acquiesced had the poster not been confrontational. The issue is that this poster has attempted to needle me from the beginning.  And, btw, I have it from other members, who I will not name, that I'm not alone.

I do not buy smug, self serving bullying.  It's cheap, especially when it's sublimated.  It's sneaky and childish.  So, I stand behind my Big Mama Kahuna statement, and since you are the big one here, you are also free to do as you will. 

Apropriateness comes in many brands and colors.  I do not consider getting my cards out on the table inappropriate.  Sniping surreptitiously, now that I find inappropriate.  In the extreme.

So, if you're kicking me off the forums that's fine.  If it's that easy I wouldn't want to be here, anyway.  If not, no worries, because I would never again participate with this poster.  I would neither read him nor respond.

Gib   

Offline Ann

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Re: Been a while so here's my news
« Reply #17 on: August 21, 2009, 10:55:06 PM »
Fine Ann,

A reasonable request for more information even though I didn't state it as scripture is not a problem or the issue and I did not claim that AZT was a PI booster.  And, I would've elaborated or acquiesced had the poster not been confrontational. The issue is that this poster has attempted to needle me from the beginning.  And, btw, I have it from other members, who I will not name, that I'm not alone.

I do not buy smug, self serving bullying.  It's cheap, especially when it's sublimated.  It's sneaky and childish.  So, I stand behind my Big Mama Kahuna statement, and since you are the big one here, you are also free to do as you will. 

Apropriateness comes in many brands and colors.  I do not consider getting my cards out on the table inappropriate.  Sniping surreptitiously, now that I find inappropriate.  In the extreme.

So, if you're kicking me off the forums that's fine.  If it's that easy I wouldn't want to be here, anyway.  If not, no worries, because I would never again participate with this poster.  I would neither read him nor respond.

Gib   

Whatever, mate. Your first post in this thread was vague enough that it looked like you were advocating AZT as a replacement for Norvir. You have to realise that people look to this forum for treatment information and as such, what we post has to be correct. If you're not sure about what you're posting, then don't post it. If you can't back it up with peer-review data, don't post it.

If any one member has called you on the carpet for treatment comments you've made in the past (and I know he has), then perhaps it's because you've been wrong in the past.

If you don't want to post here anymore just because you've been asked by another member to back up what you say, that's your prerogative. However, if you want me to ban you, you'll have to try harder for me to validate your sense of persecution. Just be prepared to back up any treatment based claims you make and we'll get along just fine.

Emma, I'm terribly sorry for this thread hijack. I'm thrilled that you're doing so well. Long may it continue!

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Giblarry

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Re: Been a while so here's my news
« Reply #18 on: August 22, 2009, 09:15:41 AM »
I expected better from you. 

Nobody seems to understand that I've been tracking the passive-agressive tendencies of this poster almost from the beginning.  I can only imagine the schmoozing he's been doing behind the scenes.  I will gladly admit when I'm wrong, and about the AZT I was wrong to post it, though I didn't intend to advocate it as a treatment.  As for the other time, I CLEARLY stated in my original post that I had no data, and as far as I knew, no data was available.  That doesn't sound like advocation of a treatment to  me.  It sounds like an opinion, which I guess, are taboo on this site. 

So, to me it boils down to he IS the Big Mama Kahuna in charge and everyone else is just his tool.  He's intelligent, no doubt about it, but intelligence doesn't equal smart and intelligence is never smart when it's wielded as a weapon. 

Offline sharkdiver

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Re: Been a while so here's my news
« Reply #19 on: August 22, 2009, 10:27:18 AM »
Hi Emma,
I am glad that your treatment is working out for yo, a bit unorthodox, but hey its working for ya. Sounds like your life is full right now, which is a good thing.

I'm sorry your thread has veered way off track by someone  >:(, hopefully it will stop and get back to YOU  ;D which is what this thread is about.

Sharkie

Offline gemini20

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Re: Been a while so here's my news
« Reply #20 on: September 22, 2009, 05:39:15 PM »
Okay time to admit I fucked up big time with my latest treatment break!

I think the penny might have finally dropped that after 18 years of being positive I cannot suppress the fucker by attitude alone however much Iíd like to think that I can.

In a month off meds my t-cells have plummeted down from 711 to 159 (16%) and my viral load has leapt to 61,543.

Most annoying for me is that apart from a few swollen lymph nodes I do actually feel perfectly well and healthy regardless of the numbers!

But for once in my life I will not be stubborn and stick my heels in about continuing 'my way'; sometimes you just have to do as your told and my doctor and I have agreed that I will restart the boosted Prezista again from Thursday.

Emma


Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline aztecan

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Re: Been a while so here's my news
« Reply #21 on: September 22, 2009, 09:48:57 PM »
EEEEP!

Emma, that is quite a drop in a month.

I fear not only is returning to treatment now in order, it may not be possible for you to take future holidays. I have seen this happen to others. They all reached a point where they could not take any STIs without risking the loss of all they had gained.

Good luck restarting the regimen. I know you will do well.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online leatherman

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Re: Been a while so here's my news
« Reply #22 on: September 22, 2009, 11:39:40 PM »
Emma honey!  :o

Although this isn't the kind of news I like to hear from you, thanks for letting us know. You know I've always said that I felt really, really good off my meds - until the proverbial stuff hits the fan.  ;) It sounds like the fan is blowing in your direction and you didn't duck.  :D Time to get back on those meds and get better before you get into serious trouble.  ;)  :-*

Me and the boyz will be thinking lots of good, happy, positive thoughts for you from our new home back down here in the sunny South.  :-*

mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Jeffreyj

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Re: Been a while so here's my news
« Reply #23 on: September 24, 2009, 05:22:18 AM »
Hi Em,
Happy 40th birthday and congrats on those HUGE numbers. Outstanding. keep up the good work! Love ya.,
Jeff
Positive since 1985

Offline gemini20

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Re: Been a while so here's my news
« Reply #24 on: September 24, 2009, 05:43:10 AM »
Hi Jeff,

Wish they were still HUGE numbers but a couple of posts back I wrote an update and my med break of 1 month has totally screwed me!

T-cells are now down at 159!

Going back on meds tomorrow.

Love to you,

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline Jeffreyj

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Re: Been a while so here's my news
« Reply #25 on: September 24, 2009, 07:23:51 AM »
so sorry to hear that Emma. Best of luck, you will get them back up there .

Miss our chats! You still are my hero!
Positive since 1985

 


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