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Author Topic: And the hits just keep coming...  (Read 24965 times)

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Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
And the hits just keep coming...
« on: April 23, 2008, 12:05:12 PM »
Howdy Peeps---

I guess I am needing some support or advice about now. It just seems like the hits keep coming in my life. Let me tell the story....Back around Easter, I had severe stomach cramps and vomiting. I chalked it up to food poisoning after looking over at WebMd and talking to a nurse here at the hospital. But after the stomach pains were over I noticed that I had two lumps on the side of my stomach. I decided I would mention it to my primary doctor when I saw him which was just on the 14th. He wanted me to get a abdominal cat scan done which I had just got done this past Monday. The results are back...

It seems that I have a legion on my liver, I guess that explains the elevated liver results. I also have a cyst on my left lung. Now in my mind, I am thinking my meds are the culprit. I have been on them since last September. I have made up my mind that I am going to stop them until I find out what's going on. I am waiting to get appointments with two specialists. I am in utter shock because it isn't like I abuse my body. But I am concerned because my mother did pass from cancer even though my primary doctor is telling me NOT to worry, I just can't help but worry. Now I seeing they are going to have to cut on me and this concerns me being poz and diabetic.

I am trying not to think the worse but maybe I should get my will in order.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Online Dachshund

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Re: And the hits just keep coming...
« Reply #1 on: April 23, 2008, 12:31:08 PM »
Queen, please don't stop your meds, it's unlikely they're the culprit so soon after starting. You're a smart cookie, you know you need to sit down and discuss the test results with your doctor before you decide to do anything.

We're here for, you know that.
Aunty D

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: And the hits just keep coming...
« Reply #2 on: April 23, 2008, 12:42:38 PM »
I agree with Doxie.  I'd definitely NOT immediately draw the conclusion that HIV meds caused this.  This issue could easily pre-date your starting meds and you just weren't aware of it, or be purely coincidental.

At any rate I'm going to be thinking of you lots and lots this week.
« Last Edit: April 23, 2008, 12:48:11 PM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: And the hits just keep coming...
« Reply #3 on: April 23, 2008, 12:51:16 PM »
Miss Queen
Sorry to see you are being hit with more "stuff".  It sucks. But there is time to relax and be good to yourself.  This is what Betty means when she says "day at a time".  See, they aint cutting you today ...and not tomorrow.  So you got time to relax and figure this thing out.  Perhaps there will never be any incision...such a nicer word than CUT.

Luv ya honey

Joel
Poz Bear Type in Philadelphia

Offline woodshere

  • Member
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  • ain't no shame in my game
Re: And the hits just keep coming...
« Reply #4 on: April 23, 2008, 12:59:29 PM »
Your Royal One,

Sorry to hear of this report. Whenever someone I care about is facing a similar situation I always tell them not to jump to conclusions.  Wait and see what the specialists have to say and what additional tests show.  We will all hope for the best.

Thinking of you,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Queen Tokelove

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  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #5 on: April 23, 2008, 01:48:57 PM »
Thanks Guys. I am waiting to hear back from my ID doc. I am sure he is going to say he doesn't want me to stop  the meds either. Nurse Leah seemed to be concerned for my mental health but I assured her I am not suicidal and I'm not. I am just in shock and wondering how am I going to deal with it all.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Online BT65

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  • Member
  • Posts: 9,619
  • Diagnosed + 1989
Re: And the hits just keep coming...
« Reply #6 on: April 23, 2008, 01:57:24 PM »
You know I'm here for ya girl-anytime. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

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  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #7 on: April 23, 2008, 02:15:02 PM »
You know I'm here for ya girl-anytime. :-*

Thanks, Betty. I appreciate that.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline wishful

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  • I am pretty content nowadays..Life is gud..
Re: And the hits just keep coming...
« Reply #8 on: April 23, 2008, 02:15:02 PM »
Try not to stress, mamacita...and im here for you as well...
Live life to the fullest...

Offline Queen Tokelove

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  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #9 on: April 23, 2008, 02:16:45 PM »
Try not to stress, mamacita...and im here for you as well...

I'm trying not to but I have all type of things running around in my mind. Due to my recent string of bad shit happening, I can't help but be a bit negative.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Online BT65

  • Global Moderator
  • Member
  • Posts: 9,619
  • Diagnosed + 1989
Re: And the hits just keep coming...
« Reply #10 on: April 23, 2008, 02:25:53 PM »
I'm trying not to but I have all type of things running around in my mind. Due to my recent string of bad shit happening, I can't help but be a bit negative.

Of course you do.  I would think you wouldn't be human if you didn't. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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Re: And the hits just keep coming...
« Reply #11 on: April 23, 2008, 02:48:41 PM »
M. honey,

I sure hate to hear this report.   Sweetie, you need to lean on your friends, and on us here....we're here for you.   I won't say "don't hit the panic button" because I am like you, I would probably have already mashed it.

I agree with the other folks, I'm not sure stopping your HIV meds is the right thing to do.   Just hang on honey, you are a strong person, and you will get through this 'crisis', or whatever it turns out to be.

love you much,

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 Snowangel

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  • Posts: 1,413
Re: And the hits just keep coming...
« Reply #12 on: April 23, 2008, 02:57:34 PM »
Queen-
I am so sorry all this crap has been thrown at you.  I agree, that you should definately keep taking your meds, you don't want to mess up your numbers.  Talk to all the docs and make the decisions with them .
Stay strong!
Love,
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 AndyArrow

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Re: And the hits just keep coming...
« Reply #13 on: April 23, 2008, 04:21:36 PM »
Your Majesty,

I just wanted to add my name to the list of people who are concerned about you.  Stopping your meds suddenly doesn't really seem like the best idea to me but it's understandable to want to have something to blame this on.  As everyone has already said take a deep breath and really pause for thought.  Talk with all your doctors to make sure everyone is on the same page.  Remember we are all here thinking about you.

All the best!
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline fearless

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  • Posts: 2,191
Re: And the hits just keep coming...
« Reply #14 on: April 23, 2008, 08:28:41 PM »
so sorry to hear about this your Highness. Am hoping the best and sending little Stevie power your way
Be forgiving, be grateful, be optimistic

Offline chm02

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    • id est
Re: And the hits just keep coming...
« Reply #15 on: April 23, 2008, 10:01:29 PM »
Sorry you got that bad news.
It's already been said here, but I'll put in my 2 cents anyway:
Learn about the lesion. Learn about the cyst. Don't stop your meds unless you have some real evidence that meds are the cause.
Best,
Mark

Offline minismom

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  • Quocumque jeceris stabit
Re: And the hits just keep coming...
« Reply #16 on: April 23, 2008, 11:36:33 PM »
Queen, my darlin, you know I love you, hun!  You are in my thoughts and prayers as always.

 :-*Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline scud44

  • Member
  • Posts: 393
  • I am watching you
Re: And the hits just keep coming...
« Reply #17 on: April 23, 2008, 11:49:19 PM »
Hi Queenie -
 you don't deserve this - no one does - your "family" supports you  in every way and we are all hoping for you to get better.
Don't blame it on the meds - keep taking them - they are important to the rest of you.

Lots of cuddles from Scuddles!!!!

XXX       XXX
 XXXXXXXX
   XXXXX 
      XX
CD4 = 110 - 30 July 2007 - 10%
VL = 139000 - 30 July 2007
CD4 = 252 - 6th August 2007
VL = 16400 - 23rd August 2007
CD4 = 240 - 23rd August 2007
VL = 400 4th Sept 2007
CD4 = 96 - 4th Sept 2007
CD4 = 120 18th Sept 2007
VL = 386000 19th Nov 2007
CD4 = 160 19th Nov 2007
CD4 = 110 10th Jan 2008
CD4 = 311 29th Jan 2008
VL = <50 29th Jan 2008
CD4 = 148 2nd April 2008
VL = 110,000 2nd April 2008
June 2010 and nothing has improved

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #18 on: April 24, 2008, 12:21:39 AM »
Thanks Scuddles and Mum
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline lucas clay

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  • Posts: 518
Re: And the hits just keep coming...
« Reply #19 on: April 24, 2008, 03:53:38 AM »

 Don't stop your meds unless you have some real evidence that meds are the cause.

I know i would be in a panic, try to be calm and find out what is going on.
Praying for you.

                                                 Lucas

Offline heartforyou

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  • Posts: 1,101
  • I must be a survivor in many ways...
Re: And the hits just keep coming...
« Reply #20 on: April 24, 2008, 06:00:20 AM »
Oh seŮorita Queen,

So sorry to hear about the recent struggle.
I wished I could do more for you, then just write these words.
Know that I am thinking of you.....

love

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline anniebc

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  • AM member since 2003
Re: And the hits just keep coming...
« Reply #21 on: April 24, 2008, 06:47:41 AM »
Queen Victoria reigned for 63 years..so you Queen Tokeove, by my reckoning, still  have 61 years left to reign over these forums...and your subjects need their Queenie, so take care of yourself.

Thinking of you and sending you Hugs from NZ
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline sharkdiver

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Re: And the hits just keep coming...
« Reply #22 on: April 24, 2008, 08:53:12 AM »
Argh!
Queenie baby, I am so sorry you are dealing with this right now. I'll be keeping you in my thoughts and prayers.

You know I luvs you

Sharkie

Offline poz1970

  • Member
  • Posts: 480
Re: And the hits just keep coming...
« Reply #23 on: April 24, 2008, 08:54:27 AM »
we got an update?

J
"The Bible contains 6 admonishments to homosexuals and 362 admonishments to  heterosexuals. That doesn`t mean that God doesn`t love heterosexuals. It`s just that they need more supervision." -- Lynn Lavne

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: And the hits just keep coming...
« Reply #24 on: April 24, 2008, 10:45:50 AM »
Queen, I'm so sorry to hear about this. (and don't know how I missed it yesterday...)

As so many others have said, please try to not panic and please don't stop your meds! They're unlikely to be the cause. Hopefully this will turn out to be nothing serious - I've got everything crossed for you and will be keeping you in my thoughts.

Queen Victoria reigned for 63 years..so you Queen Tokeove, by my reckoning, still  have 61 years left to reign over these forums...and your subjects need their Queenie, so take care of yourself.


And did you know that Queen Victoria partook of the good green? It's true!

Hugs,
Ann
xxx
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 Queen Tokelove

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  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #25 on: April 24, 2008, 11:44:45 AM »
Thanks Again Everyone. I really do need all of your support. I feel like I am falling apart and I am no long in this world. Not that I want to kill myself but that my body is starting to give out. My emotions are getting the best of me and I have been everything from angry to tears. I hate that shit because I pride myself on being logical and some what emotionless. I guess it's the Trekkie in me, while everyone was wet for Captain Kirk, it was Spock for me...Must've been the ears and those eyebrows... ;D I didn't take my meds last night, I just didn't want to but you guys made some good and logical points so I will take them tonight, I promise. I still haven't heard back from the nurse with the appointment dates to the specialists. I'll give them til about 1 or so then I will call and find out myself. I am still trying to wrap my head around it all but then I am so tired of asking why. I have done it when I lost my hearing, became poz, and now this. I am to the point of why ask why but I insist that I am angry and my anger is directed at my God/dess.

Jan--- Well, if YOU say it then it is official. I rule the forums, Peter and Tim just do all the dirty work... ;D Funny, you mentioned Queen Victoria, that was my mother's name.

Ann-- Also funny you mentioned that Queen Victoria partook of the good green. So did my mother, she smoked her first joint when she was 29 and pregnant with me. So my habit is hereditary, I knew it and I am sticking with that story.. ;D

Hermie-- So good to hear from you. I like that avy too. Wishes I could be there to toke some of the green you got over there.

Aunty D--- I love you beyond words. I love that Poak Chop video too. I think I am going to learn that dance and when I get past this, that will be my celebration dance and song... :-*


I love you all and I thank you for your support. Please keep sending the good vibes because I am running on E about now and I will draw my strength from you all. I will continue to keep you updated with my emotions and with the specialists. I have been through a lot in my little 39 years but this is the hardest fight I have had to take on and believe me I am not going out without a fight. I am ghetto, thuggish, logical, strong but most of all I am a Queen. Love ya's... :-* :-* :-* :-* :-*
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Online BT65

  • Global Moderator
  • Member
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  • Diagnosed + 1989
Re: And the hits just keep coming...
« Reply #26 on: April 24, 2008, 01:07:29 PM »
My dear Queen,

I think it's perfectly normal to want to stop everything (treatments etc.) when there's a possible looming malady.  But, you don't want things to get much worse and spiral out of control.

Your anger is validated.  When my 1st husband died, a therapist asked me if I was angry at God.  I said "I can't be.  I might get struck by lightening or something."  He replied "Don't you think God is big enough to handle your anger?"  So, I allowed myself the anger.

I hope you're getting some answers.  We're still here for ya, and waiting on the news.
   Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

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  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #27 on: April 24, 2008, 01:26:38 PM »
No news yet, I called my primary doctor's office and spoke with the nurse. The one specialist was closed yesterday and the other one never got back with her...So she says she will call them back today and let me know. I still have not heard back from my clinic nurse with what my ID doc is wanting me to do. Maybe it's just me but it seems like everyone is just sitting on their asses. I know it's only been a day but hey, I want to just get all this over with. :-\

EDITED: My appointments with the specialists---one is one April 30th and the other is on May 12th.
« Last Edit: April 24, 2008, 02:26:11 PM by Queen Tokelove »
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline bear60

  • Member
  • Posts: 4,104
Re: And the hits just keep coming...
« Reply #28 on: April 24, 2008, 02:52:40 PM »
Hey Queen
Thats great that you could get appointments with specialists so soon.  Sometimes its a very long wait.
So, lets go shopping!  That always makes me feel better.
Poz Bear Type in Philadelphia

Offline Queen Tokelove

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  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #29 on: April 24, 2008, 07:27:52 PM »
Hey Queen
Thats great that you could get appointments with specialists so soon.  Sometimes its a very long wait.
So, lets go shopping!  That always makes me feel better.

LOL...Are you paying for this shopping spree? If so, I can PM you a list of what I want and the sizes I wear... ;D
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Tim Horn

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Re: And the hits just keep coming...
« Reply #30 on: April 25, 2008, 08:58:07 AM »
I rule the forums, Peter and Tim just do all the dirty work... ;D

...and neither of us dare challenge you on this, either.   :D

Offline Queen Tokelove

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  • Smokey the Smurf
Re: And the hits just keep coming...
« Reply #31 on: April 25, 2008, 01:32:11 PM »
...and neither of us dare challenge you on this, either.   :D

Ha Ha Ha...Good man... ;D
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Queen Tokelove

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Re: And the hits just keep coming...
« Reply #32 on: April 25, 2008, 09:21:56 PM »
First, I will stick with the original topic and mention that I have been doing some research on biopsies. From what I have found out when one has a cyst on a lung it is likely a pocket of air on the lung. I am hoping this is the case with me. As for the liver, well that was a bit more complicated and not sure if I was comprehending totally what I was reading. But it sounds like to me that if it a biopsy of the liver than they are looking to see if it is cancer or few other things. What I am not thrilled about is a needle going through a tube and them sucking a piece of lung or liver out. I know it must be done but I am scared of needles, it took me a long time to just get use to getting my blood drawn or shots. I use to get light headed. I know, go figure with all the horror movies I love to watch. What I am hoping is that I can be put to sleep for these procedures. In the case of the lung biopsy, if I move or anything, it can lead to a punctured lung. I jump when I get blood drawn, ok. I want to be put to sleep. My sister suggested that since they may have to do biopsies for both that the doctors do them both on the same day to make for less trauma to my body. I am going to suggest this to both specialists.

Now since the title of this thread is the hits keep coming, I feel I can add this new event here too. My youngest son went to jail yesterday. He is only 17 yrs old. He has 11 charges against him including attempted homicide and 7 counts of reckless endangerment. If you want the details, peep in the Women's Dating thread, I posted the local news article there from today's paper. It made the local tv news yesterday. He called me a few times today. I am trying not to stress too much about it because at this point, I really feel I can't afford to. All I can do is vent which what I have been trying to do. How much more am I suppose to take? I seriously feel like I am at my breaking point but something just keeps pushing me on. Maybe it is my guardian angels... :'(
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Online BT65

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Re: And the hits just keep coming...
« Reply #33 on: April 26, 2008, 12:12:27 AM »
I'm pulling for ya, girl. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline anniebc

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Re: And the hits just keep coming...
« Reply #34 on: April 26, 2008, 12:19:50 AM »

Just look around you Queenie, all your guardian angels are right here..sending you love from all around the globe.

((((HUGS))))

Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Queen Tokelove

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Re: And the hits just keep coming...
« Reply #35 on: April 26, 2008, 01:10:36 AM »
Just look around you Queenie, all your guardian angels are right here..sending you love from all around the globe.

((((HUGS))))

Jan :-*

Right you are, Jan.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline scud44

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Re: And the hits just keep coming...
« Reply #36 on: April 26, 2008, 07:52:00 AM »
The prayers are flowing for you Queen - My thoughts go out to you and I just hope that some goes right for you very soon

XXXXXXXXXX

Scuddles
CD4 = 110 - 30 July 2007 - 10%
VL = 139000 - 30 July 2007
CD4 = 252 - 6th August 2007
VL = 16400 - 23rd August 2007
CD4 = 240 - 23rd August 2007
VL = 400 4th Sept 2007
CD4 = 96 - 4th Sept 2007
CD4 = 120 18th Sept 2007
VL = 386000 19th Nov 2007
CD4 = 160 19th Nov 2007
CD4 = 110 10th Jan 2008
CD4 = 311 29th Jan 2008
VL = <50 29th Jan 2008
CD4 = 148 2nd April 2008
VL = 110,000 2nd April 2008
June 2010 and nothing has improved

Offline Queen Tokelove

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Re: And the hits just keep coming...
« Reply #37 on: April 26, 2008, 02:14:59 PM »
I think all the prayers and good vibes must be affecting me. I woke up today feeling rather calm about things. I guess I am accepting things and will just go from there. Not like I have much choice in the matter, is it? I thank you all for your support and keep it coming. The appointments are just the beginning, I am aware of that and I have taken everyone's advice and started back on my meds. I figure if there is bad news, I am going to need all the strength I can muster to overcome whatever it may be.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline scud44

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Re: And the hits just keep coming...
« Reply #38 on: April 26, 2008, 06:11:30 PM »
Glad that you're feeling better annd more serene
I hope all goes well for you from now on

X()X()XX()X()X()
Scuddles
CD4 = 110 - 30 July 2007 - 10%
VL = 139000 - 30 July 2007
CD4 = 252 - 6th August 2007
VL = 16400 - 23rd August 2007
CD4 = 240 - 23rd August 2007
VL = 400 4th Sept 2007
CD4 = 96 - 4th Sept 2007
CD4 = 120 18th Sept 2007
VL = 386000 19th Nov 2007
CD4 = 160 19th Nov 2007
CD4 = 110 10th Jan 2008
CD4 = 311 29th Jan 2008
VL = <50 29th Jan 2008
CD4 = 148 2nd April 2008
VL = 110,000 2nd April 2008
June 2010 and nothing has improved

Offline ZCorker

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Re: And the hits just keep coming...
« Reply #39 on: April 27, 2008, 01:38:27 AM »
Dear Queen:

   I have had this disease for approximately 26 years.  There was no test for it when I was first infected.  I started antiviral treatment in February 1992 and have lost most of the sensation in my lower extremities and other parts of my body from the neurotoxic class.  I don't know anyone else who has lived as long as I have unless they were undetectable.  Unfortunately I have never been undetectable.  I just started a six drug regimen and a bit concerned about whether my liver and kidneys will hold up.

   I am inclined to agree with the other commentators about not stopping the drugs.  However, I would also not listen to everything clinicians tell you as well.  If you stop the drugs, you may never be able to use them again.  That is hiv.  You have a one shot chance of going undetectable and if you don't go undetectable you will develop class resistance.

   There are things you can do to help your liver.  There are published papers that recommend adding one teaspoon of ground milk thistle seeds with your evening meal.  This is not the preground milk thistle you buy in the store.  You need to buy a bag of unground milke thisle.  Milk Thistle seeds are commonly used in the hindu cooking and were used by early americans on their quest west.  Another thing you can do is add 1-2 teaspoons of L-glutamine powder on an empty stomach.  There are also published reports on this. 

   If all else fails, and your liver croaks, one of the hospitals in England has been doing liver regeneration studies and they have a 60% success rate for people with liver failure.  If you get desperate and need more info, ICQ me at ICQ 118179171 in invisible mode.  You need to find out what the liver cyst is from.

   After 26 years, the only drugs I would caution you about is the neurotoxic class.  You should avoid DDI, D4T or DDC unless it is the only option available to you.  Although not as toxic and commonly prescribed, 3TC and FTC can also cause problems.  I wouldn't quit taking your drugs yet.  If your doctor doesn't have an appointment slot available, you should march into their office and demand to be seen. 

   There is no question that the drugs are a problem for all of us, but I come from a generation when people commonly died within 6-9 months after being diagnosed.  For all the hell the drugs cause, they are definitely better than not taking them at all.

   Drink lots of water during the day, avoid alcohol  (more than 1/4 cup of wine) once a week.  Try and get as much sleep as possible; this means going to bed at 9am and getting up with the chickens.  The best thing you can do is to get active and involved with others and try and change the political situation.

   I have multi-class resistance.  I am on the last regimen available to me.  I am taking Abacavir, Viread, Duranavir, TMC 125, Norvir, and Raltegravir.    I can't take 3tc or any of the neurotoxic drugs.  Don't stop your drugs without getting more information.  When seeking a provider, check to see that your provider is dual board certified with both an Infectious Disease Credential and also a credential from the hiv association.  My experience with clinicians is that those who seek extra credentials have a tendancy to be more qualified.  Another thing to look for is someone that has mainly hiv patients and a lot of experience and hopefully patience to work with you.  I empathize with you, but have some faith

Rita Reports used to be a good source of information, but they changed their format in February and I no longer like their newsletter.  That is one of the reasons I am logged on to here tonight. 

Feel free to contact me if I can be of any help.  ICQ 1181791717 (invisible mode)

Online BT65

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Re: And the hits just keep coming...
« Reply #40 on: April 27, 2008, 09:08:22 AM »
I really don't think this was so much about Queen stopping meds, as to what she's dealing with-the noticeable cysts on her liver and lung and her son's recent trouble.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline MOONLIGHT1114

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Re: And the hits just keep coming...
« Reply #41 on: April 27, 2008, 09:34:21 AM »
Hi Queen~

Forgive me for the late reply.  I'm sorry to hear about all of the shit that's on your shoulders now.  I agree with the others here, please don't stop your meds.  If your defenses are down you don't need to add to it by not adhering.

Its a good sign that you can see a doc this week, usually you have to wait forever to see a specialist. 

I am keeping my fingers croseed!

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

Offline Queen Tokelove

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Re: And the hits just keep coming...
« Reply #42 on: April 27, 2008, 01:28:03 PM »
Wow, what a post by ZCorker.  Well, it sounds like you know your stuff, Z but a lot of what you said went right over my head. I am not familiar with the classes of drugs and what not. I just know what I take and how I am suppose to take them. I did start back on my meds like a good little Queen. I am hoping my liver will not give out on me but if it did, it's not likely I make it to England.

I really don't drink much at all. It is in spells and usually consists of nothing more than a glass or two of wine. If it is beer then one of those usually with a shot of tequila. But it not often that I drink. You must be doing something right since you are still here after 26 years of living with your virus. Congrats on that. I haven't had ICQ in years but am available on Yahoo.


And Betty, you are on point as always. Cindy, yeah, I appreciate the quick dates with specialists because I am feeling like time is of the essence here. I just hope if they both want to do biopsies that they can do them at the same time. It would be easier for me and I mos definitely want to be sleep for the procedure.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Longislander

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Re: And the hits just keep coming...
« Reply #43 on: April 27, 2008, 01:45:02 PM »
Hi Queen~

Just wanted you to know I've been reading along and that I'm thinking about ya and hoping for the best outcome!

Paul :)
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 joemutt

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Re: And the hits just keep coming...
« Reply #44 on: April 28, 2008, 04:05:54 AM »
Dear Queen, i am thinking of you and I send you stength and love.

Offline Queen Tokelove

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Re: And the hits just keep coming...
« Reply #45 on: April 30, 2008, 11:06:22 AM »
Just a quick note to say that my appointment with the liver specialist is today. I'll be back with the update. Wish me luck or whatever... :-X
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline bear60

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Re: And the hits just keep coming...
« Reply #46 on: April 30, 2008, 11:15:16 AM »
Hey,,,,wishing you luck or whatever.

Joel
Poz Bear Type in Philadelphia

Offline Queen Tokelove

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Re: And the hits just keep coming...
« Reply #47 on: April 30, 2008, 04:38:34 PM »
Not really much to report. It would seem that I have some type of thickness on the lining of my intestinal wall and a shadow of something. They are not sure what to make of either from the cat scan. So now I am scheduled or will be for next week to get 2 sonograms done, one of my liver and the other of my gallbladder. I also have to have a colonoscopy done on June 5th. If you want the details of the visit then I suggest you check out my blog(shameless plug). But I did have a bit of fun with the intern who was cute in a Jewish boy sort of way.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline scud44

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Re: And the hits just keep coming...
« Reply #48 on: April 30, 2008, 08:29:21 PM »
You are not supposed to chat up the medical staff!!!!!!

Unless they are realy cute and take homeable!!!!!

Keep well - I'm thinking of you
Regards
Scuddles
CD4 = 110 - 30 July 2007 - 10%
VL = 139000 - 30 July 2007
CD4 = 252 - 6th August 2007
VL = 16400 - 23rd August 2007
CD4 = 240 - 23rd August 2007
VL = 400 4th Sept 2007
CD4 = 96 - 4th Sept 2007
CD4 = 120 18th Sept 2007
VL = 386000 19th Nov 2007
CD4 = 160 19th Nov 2007
CD4 = 110 10th Jan 2008
CD4 = 311 29th Jan 2008
VL = <50 29th Jan 2008
CD4 = 148 2nd April 2008
VL = 110,000 2nd April 2008
June 2010 and nothing has improved

Online BT65

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Re: And the hits just keep coming...
« Reply #49 on: April 30, 2008, 09:42:38 PM »
Queen dear, I'll be keeping you in my thoughts. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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