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Author Topic: Shame, guilt and fear - just tested positive  (Read 12611 times)

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Offline Cojo

  • Member
  • Posts: 232
Shame, guilt and fear - just tested positive
« on: June 03, 2011, 11:09:52 pm »
It still seems surreal to be writing this post. It is a dance that I have done for 20 years, and I just found out that I tested positive. Thus week, I had a rapid test done, and I still can't believe it is true. At 44, I should have made it through my life without getting infected; i am educated, thought I was careful and on and on.
So I write this note terrified. What's next? What about drugs? What will they do to me? What if I have a resistant strain...what if, what if, what if....how many years do I have?
When I think of HIV, it's the virus others get, not me. I am knocked flat on my ass. I have had a week of tears, worry, diarrhea, sweats...it's as if I am already declining. I think it is a fairly recent infection as my partner of ten years has tested negative. Thank God!!!
Folks, I feel so guilty that I had it all and have thrown it all away. I have some much shame. I am angry at ME! Please help me with any thoughts or advice...it seems all darkness now....
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD
Feb 2015 CD4 420 30% UD
Jul 2015 CD4 480 32% VL51 !!
Sep 2015 UD
Feb 2016 CD4 460 35% UD
Aug 2016 CD4 378 33% UD

Offline mikeyb39

  • Member
  • Posts: 980
Re: Shame, guilt and fear - just tested positive
« Reply #1 on: June 04, 2011, 01:47:18 am »
welcome to the forum Cojo,

I felt the same way when it happened to me at 40.  My first advise is to get a doctor if you haven't already and get a definitive test.  When I went thru seroconversion I was sick as a dog for 3 weeks.  You're doctor will need to do resistance testing and also viral  load/CD4 test to see where you are at before you start medication.

The big thing is that you aren't going to die anytime soon.  It will take a while to come out of the funk you are in though, I too am still recently diagnosed and I have my good days and my bad days. There are lots of nice folks on here that you can get answers from

where abouts are you from?
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline Betelgeuse

  • Member
  • Posts: 163
Re: Shame, guilt and fear - just tested positive
« Reply #2 on: June 04, 2011, 04:02:19 am »
What you're feeling is natural.

In a blink of an eye when I heard the word "positive", my hopes, my dreams and my aspirations were all wiped out.  To this day, I still struggle with dealing with this diagnosis.  

I really can't speak to the shame or guilt - everyone has their opinions on HIV and its social repercussions.

In my doctor's desperate attempt to calm me down (I was REALLLLLY mentally out of shape), he dumbed down this condition to a minor annoyance one must live with every day - much like what a diabetic goes through.  Without sounding offensive to diabetics, it is this thought that has helped me not be so.. . . I can't think of the word. . . so dramatic or doom/gloom about the whole thing.

I still haven't come to terms with being positive - it's still been just over a month for me since my diagnosis.  One thing I know for sure is that with proper care, I'll be just fine.

Do you have a good network of friends that support you?
« Last Edit: June 04, 2011, 04:07:27 am by Betelgeuse »
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline Nicolas2

  • Member
  • Posts: 51
Re: Shame, guilt and fear - just tested positive
« Reply #3 on: June 04, 2011, 05:22:12 am »
Cojo, what I can tell you: in ONLY a month, you'll feel much better.

Hang on.

Offline MarkB

  • Member
  • Posts: 292
Re: Shame, guilt and fear - just tested positive
« Reply #4 on: June 04, 2011, 05:59:15 am »
Hi Cojo

Thank you for posting. I think most - if not all - of the members of this forum would identify with the range of emotions which you have so eloquently expressed. You wrote:

Folks, I feel so guilty that I had it all and have thrown it all away. I have some much shame. I am angry at ME! Please help me with any thoughts or advice...it seems all darkness now....

I know that when people here tell you that it is going to be alright, it will sound hollow; and I'm not going to offer you any platitudes. I know too that this will probably feel like the darkest place you have ever been. All I can say is that the first thing you can hold on to is that you need never be alone in that dark place. I hope that you have supportive friends; but to that support, you can most certainly add us. We are here too; and we are not going to go away nor abandon you. You are welcome, and you will find that there are people on this forum with an extraordinary amount to offer you by way of knowledge, wisdom, and humanity. When I first joined this board I had no idea what to expect, but what I found - and what I am confident you will find too - is that nothing I felt, or dreaded, or grieved for, was unique to me. All of us have, at some stage or another, experienced that. And we are still here.

Read the links to the information provided on this forum. Read some of the posts, the blogs, and the discussions. I hope you will find, as I did, that your questions can be answered. Try not to live too much in tomorrow: you have enough to cope with simply getting through today. One step at a time. And be kind to yourself: you have not become a virus, or an object of shame and guilt. You remain who you are, with all your talents and lovableness. And, let me emphasise it again, you are very welcome here.



/... edited for typos.
« Last Edit: June 04, 2011, 06:10:42 am by MarkB »

Offline hope_for_a_cure

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  • Posts: 1,517
Re: Shame, guilt and fear - just tested positive
« Reply #5 on: June 04, 2011, 08:28:58 am »
Try not to live too much in tomorrow: you have enough to cope with simply getting through today. One step at a time. And be kind to yourself

I would echo this!


Offline jp2011ny

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  • Posts: 22
Re: Shame, guilt and fear - just tested positive
« Reply #6 on: June 04, 2011, 11:59:27 am »
hi cojo.
i am 40 and i was dianosed about 3 months ago. what you are feeling right now is exactly what i have been feeling. well, it's gotten better actually.
from what i have learned for the past 3 months, it is not difficult to manage the virus with proper care. what i found difficult is that it takes longer time for me to be able to manage my emotions. but that's just me. I am an emotional person.
i know i will be fine. no matter how many people tell you that you are going to be ok, you have to realize that you are going to be ok. then you will feel better.
welcome to the forum.
JP

Offline mecch

  • Member
  • Posts: 13,455
  • red pill? or blue pill?
Re: Shame, guilt and fear - just tested positive
« Reply #7 on: June 04, 2011, 05:13:50 pm »
I think your headline bodes well for your progress to acceptance and taking control of your status.
There it is, in a nutshell. 3 challenges.

Well education and your doctors and time will dial down the fear considerably.

I converted in my forties.  I didn't feel guilt, since i was single, but did feel some shame and stupidity.  Now a few years later that's gone.  A few things that helped me personally - posting a lot here and finding myself the same as everyone else, even though we all lead different lives and had different experiences.  This helps to reduce HIV right down to what it is, a virus.  With no moral, no judgement, no shame.  Just a virus anyone can get.  Unfortunately. It tells me NOTHING about other people, who have it or dont. Its just a virus.

Also what helped was telling all friends and making it mudance.

Finally, after a year or two, I found myself congratulating myself on the 25 years i DIDN'T catch HIV.  You'll see that in your own case, too, eventually.

Welcome to the forums.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline RichardfromIndy

  • Member
  • Posts: 17
Re: Shame, guilt and fear - just tested positive
« Reply #8 on: June 04, 2011, 05:31:11 pm »
My first test came back "inconclusive" in September of 1990.  I lived with the fear, guilt and shame that you spoke about for almost 2 months before having the courage to get tested again.  And yes, it came back positive.  Still, I did not want to believe it and languished in disbelief for almost a year before finally coming clean about my status. 

What have I learned over the past 20 years?  That you have to take this disease head-on and do all that you must in order to maintain your health to the best of your ability.  Watch your diet, exercise, track your test results, keep informed about the medications you take and stay aware of the research for new medications.  I have been so lucky in that I have been able to maintain my weight for the most part, have not had any negative reactions to my medications and have my family to support me, particularly my wife.  Don't play the role of the victim.  Stay resolute in your dedication to taking your medications as persecribed by the doctor and do everything that you can to maintain your health.  At the age of 69, I feel most fortunate to have lived as long as I have and with little or no side effects from the disease.  Part of that has to do with a change in my behaviors and not doing those things that will have a negative impact should I choose to, in my terminology, act out with irrational and self-destructive activities.  My best to you in your battle with this disease, and believe me, it is a battle...........for your life, your well-being and your oppotunity to be there for your family.

Offline rocky48

  • Member
  • Posts: 39
Re: Shame, guilt and fear - just tested positive
« Reply #9 on: June 04, 2011, 05:41:54 pm »
cojo

I had the same feelings as you do. I was told at age 60 that I was positive but my feelings have changed now it like living with my high blood pressure. I know its more serious but just hang in and things will turn around. Your in a good place here on poz to learn a lot about being positive.  Great advice here from people who know.

Take care
Started Atripla on 4/23/11
5/27/11   CD4 - 572 VL - 130
9/30/11   CD4 - 566 VL - UD
3/23/12   CD4 - 640 VL - UD
9/21/12   CD4 - 699 VL - UD
Switched to Triumeq its been a couple years now.
8/27/18   CD4 - 756  VL - UD

Offline Cojo

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  • Posts: 232
Re: Shame, guilt and fear - just tested positive
« Reply #10 on: June 04, 2011, 11:50:47 pm »
I can't thank all of you enough for your tender words of kindness and reassurance. Virtually strangers, but literally friends. I have not seen a doctor yet as the one recommended to me is away. I have an impending trip to California for a week next week (it's a treat when you live in Toronto!!) and I am worried that I should see a doctor, like now. On the other hand, if my test had been a few weeks later, I wouldn't have known any different I guess.
It's funny how I hear posts that talk about managing HIV akin to diabetis or similar condition - I find that so hard to believe as HIV seems so much bigger and scary than that.
I think I will feel better once I know where my numbers stand (although that feels like getting tested again!)
Thanks again folks....
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD
Feb 2015 CD4 420 30% UD
Jul 2015 CD4 480 32% VL51 !!
Sep 2015 UD
Feb 2016 CD4 460 35% UD
Aug 2016 CD4 378 33% UD

Offline MarkB

  • Member
  • Posts: 292
Re: Shame, guilt and fear - just tested positive
« Reply #11 on: June 05, 2011, 04:23:41 am »
Cojo

In my (unscientific) opinion, you should go ahead and enjoy the trip: nothing is going to change in the next week. In fact, you could probably go on a world cruise and still find that nothing had changed.

It's funny how I hear posts that talk about managing HIV akin to diabetis or similar condition - I find that so hard to believe as HIV seems so much bigger and scary than that.

I know; when I was diagnosed (in 2007) I assumed that I would die a wretched death within a year or so. It didn't happen. There are, I think, two types of unhelpful response to the idea of being HIV+. One is to think that it doesn't matter, that you can take a pill or two a day and forget about it. The other is, as you put it, to make it so "big and scary" that the mere thought of it overwhelms you.

What you have is a chronic condition. At some point, the chances are that you are going to need to go on medication for that condition. And, given our present knowledge, you will need to continue taking that medication for the rest of your life. The treatments for this condition are, however, becoming increasingly sophisticated (one current regime involves taking a single pill once a day); and if you look after yourself, and with the kind of medical care which will be available to you in Toronto, there is no reason why your lifespan should not be as long as it would otherwise have been.

By way of contrast, take my mate Pete. He's not HIV+. What he is, is a chronically insulin-dependent diabetic who has had four heart bypasses and lymphoma. He also has arthritis, osteoporosis, and a shed-load of other ailments it would take too long to describe: the sum of which being, it takes a forklift truck to deliver all the medications he's on (he has to take some 25 pills a day). In short, he is seriously not a well man. But he gets up every day and does a high-powered job. And he smokes like a Stackhouse chimney, drinks like a fish, and is one of the funniest and most humane people I know. The night I started medication, I was frightened, upset and felt that the world was coming to an end. I rang Pete. And with the sympathy and quiet humour for which I value him, he said "I'll swap you my conditions for yours, if you like ..."

For most of us, particularly in the early days, HIV did indeed seem "bigger and scarier than that". And it's when you read the accounts of how things used to be, that you realise just how big and scary it actually was - and could still be, if left untreated. But you will, I am sure, find that that does not need to happen to you.

So. Welcome to the forums; enjoy your trip to California; let us know how it is going for you, and we look forward to your posts.

 :)


« Last Edit: June 05, 2011, 04:53:01 am by MarkB »

Offline Cojo

  • Member
  • Posts: 232
Re: Shame, guilt and fear - just tested positive
« Reply #12 on: June 05, 2011, 09:24:12 am »
Thank you Mark for your optimistic advice. It confirmed what I know in my gut, but my head still spins.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD
Feb 2015 CD4 420 30% UD
Jul 2015 CD4 480 32% VL51 !!
Sep 2015 UD
Feb 2016 CD4 460 35% UD
Aug 2016 CD4 378 33% UD

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Shame, guilt and fear - just tested positive
« Reply #13 on: June 05, 2011, 09:52:10 am »
Hi Cojo, welcome to the forums.

You said you tested positive on a rapid test, but was this confirmed with a Western Blot? Rapid tests sometimes give false positive results and any hiv antibody test must be confirmed with a WB. Please make sure you have this done before you invest too much emotional energy into this preliminary diagnosis.

Regardless, go to California and enjoy your trip. Nothing serious is going to suddenly happen. The physical symptoms you've been experiencing since your test are all typical symptoms of extreme stress. So chill out in Cally and feel better.

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 frdfandc

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  • Posts: 10
Re: Shame, guilt and fear - just tested positive
« Reply #14 on: June 05, 2011, 11:29:31 pm »
I too, just recently tested positive at the age of 34. It was a huge shock to the system. But I ended up telling everyone in my family. A few days after I got out of the hospital for a related stint of pneumonia, my Dad and I had a long talk. He basically said that what I have is a virus that can be easily treated and it is not a death march. Especially when compared to the fact that he has heart issues - erratic heartbeat with a pacemaker/defibrillator in his chest - that could basically kill him in an instant.

I don't fear having this virus. Yes it's a sidetrack, but everything happens for a purpose. Something good always happens out of the ashes of the bad.

Not to sound like I'm preaching here, but nothing is given as a burden that God doesn't think you will not be able to handle. You are much stronger than you think.

Surround yourself with good friends and family. Get support. Talk to your Doctors. They will help you any way they can. My Doctors - Primary Care and Infectious Disease - are always telling me to call them, even if its just to talk.


Offline Cojo

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  • Posts: 232
Re: Shame, guilt and fear - just tested positive
« Reply #15 on: June 06, 2011, 06:25:04 pm »
It is almost one week to the hour when I first heard the news delivered "Your test came back reactive". As I look back at the week, I have a few random thoughts:
- there has hardly been a moment when what is happening to me and my partner has not been on my mind. A few times I have caught myself distracted for a few moments and then it comes back like a wave. That said, my mindscape has been more rational the last few days as I speak to others and read through these forums.
- I have been told many times over that "what if" thinking is just not helpful and is in itself very destructive. For me this type of thinking is an attack of catastrophes that continually cloud my mind. What if my numbers are bad? What if my partner does eventually test positive? What if I have a drug resistant strain? What if the side effects are bad? See what i mean!!
- I have has an abundance of unconditional love showered upon me. If I ever doubted how much my partner, friends, faith community loved me, has that ever changed. They can't see the shameful me that I see; they have reflected only love
- mornings are bad. I wake up and panic about what the day may bring. I scan myself for symptoms. I weigh myself and check my body in the mirror before I hit the shower to see if anything is different. I fear today is the day I will start a cycle of sickness...
- my psychiatrist/psychologist have been incredible. The are trying to whittel this whole thing down to what it is....a rapid blood test tells me that I have a virus that is understood, mega-reserached and treatable. I hear it, but it seems so much bigger than that still to me. I am hating the analogy to diabetes. I don't think I'd feel anything like this if I was diagnosed diabetic
- I am purposefully not investing any hope in the WB coming back negative. The testing nurse told me it was a "strong positive" (whatever the hell that means). I simply don't have hope in a better result test.
- I know I prefer to stay in bed. It feels like sanctuary right now. Sleep is my only escape.

All of you on here have been a true gift. From my heart, thanks.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD
Feb 2015 CD4 420 30% UD
Jul 2015 CD4 480 32% VL51 !!
Sep 2015 UD
Feb 2016 CD4 460 35% UD
Aug 2016 CD4 378 33% UD

Offline jacken

  • Member
  • Posts: 72
Re: Shame, guilt and fear - just tested positive
« Reply #16 on: June 06, 2011, 06:55:42 pm »
Cojo, as newly diagnosed myself, here is a big hug for you. I can understand your feelings. When something like this happens. we are always not prepared and are forced to look at life from a different perspective.

There have been very been good advice and perspective given in this thread and like you said, it is a true gift. I would just share with you my perspective. It is great that you are seeking help and support.

Love those who give you unconditional love by showing them that their love helps you fight and fight strong. They don't see the shameful you because there is nothing to be ashamed of.

The infection does occupy our mind but try to do something you enjoy. After I have read a lot about hiv, I actually think it helps for me to stay away from them so I am not constantly being reminded of my condition.

"What if" is fun to do sometimes but when it becomes excessive, it is counter productive and can be overwhelming.

Our bodies have limitation but our mind don't. The virus may have entered your body but it can not and will not affect your mind.

Be well and enjoy your trip to California.

Offline MarkB

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  • Posts: 292
Re: Shame, guilt and fear - just tested positive
« Reply #17 on: June 06, 2011, 07:00:47 pm »
I am hating the analogy to diabetes. I don't think I'd feel anything like this if I was diagnosed diabetic

Hello Cojo

I am truly sorry if I have upset you in any way. When I referred to diabetes in my earlier post, it was not intended as an analogy but by way of comparison. What I meant to say was that if the WB does confirm that you are HIV+, the treatments which will become available to you at the appropriate time may well prove simpler to accommodate, and carry fewer side effects, than the medication necessary for the aggressive control of other chronic conditions, such as diabetes.

But - and here again I am treading on delicate ground - when you say "I don't think I'd feel anything like this if I was diagnosed diabetic", what is it that you feel? For me, HIV is a virus, not a sin; it is a chronic medical condition, not some judgment or punishment for supposed wrongdoing. Again, for me - and I know it is easy to say - if that is the case, then you are in a place you do not need to be. You say that you have had an abundance of unconditional love showered upon you. Now, if those whom you love, and who so evidently love you, have shown you unconditional love, then perhaps you can begin again to open the door of kindness towards yourself.

Offline buginme2

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  • Posts: 3,426
Re: Shame, guilt and fear - just tested positive
« Reply #18 on: June 06, 2011, 07:34:41 pm »
Hey I was kind of in the same boat as you when I tested positive.   In my late 30's, educated, partnered, all that.  It was a shock...no doubt.   My partner ended up being negative and I had been positive for about 2 years before I found out and he and I have had a lot of unprotected sex in that time period and he still tested negative.  My point is don't freak out that he may be positive just yet.  As a matter of fact dont freak out about anything yet.  Take it step by step.  Get to a good dr.  Get your blood work done.

My partner went with me to my first couple dr appointments and I recommend yours go with you as well.  It took a lot of pressure off having him there and my dr was able to speak with him as well.  In addition, my partner went on his own to another dr that is an hiv specialist to get tested and discuss his risk and everything.  My recommendation (and im not a dr) is that you begin treatment even if yohr numbers are ok to add a layer of protection to you and ur partner.  You are less likely to transmi the virus if you are on treatment with an undetectable viral load.  Discuss that with your dr.

Have fun on your trip.  Hope its for pleasure and not business.
Don't be fancy, just get dancey

Offline Cojo

  • Member
  • Posts: 232
Re: Shame, guilt and fear - just tested positive
« Reply #19 on: June 06, 2011, 10:34:45 pm »
Hi folks, and thanks again for some very kind responses. Mark, you did not offend or upset in any way about the diabetic analogy...it was about me just venting and ranting. You Mark, have been nothing but kind :)
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD
Feb 2015 CD4 420 30% UD
Jul 2015 CD4 480 32% VL51 !!
Sep 2015 UD
Feb 2016 CD4 460 35% UD
Aug 2016 CD4 378 33% UD

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Shame, guilt and fear - just tested positive
« Reply #20 on: June 07, 2011, 08:43:26 am »
- I am purposefully not investing any hope in the WB coming back negative. The testing nurse told me it was a "strong positive" (whatever the hell that means). I simply don't have hope in a better result test.

You still need to have a Western Blot confirmation. False positives can and do happen on rapid tests and they can look like a "strong positive". If we could totally rely on rapid positive results, there would be no need for Western Blot confirmation, but we cannot totally rely on rapid positive results.

Sometimes false positives just happen for no apparent reason. Sometimes they are caused by pregnancy (obviously not your problem) and sometimes they can be caused by an underlying autoimmune problem. You may not necessarily know if you have an autoimmune problem as you may have had any symptoms yet.

Please, see to it that your result is confirmed - or ruled out - by a Western Blot. You need to know either way. If you did indeed have a false positive, you may want to be screened for autoimmune disease. Good luck and keep us posted. You never know, you may have a happy surprise.
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 Cojo

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Re: Shame, guilt and fear - just tested positive
« Reply #21 on: June 08, 2011, 08:07:29 am »
The health department called and confimed the Western Blot as positive. Bummed but expected it. No turning back  is absolutely real. I feel like I am at a juncture where I can just wait and watch me die or come out swinging. I don't think either extreme is good. At the airport now and heading to Las Vegas, Palm Springs and San Diego for a rest/work trip. I plan to literally fall into the sunshine for a few days. Thanks again folks...
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD
Feb 2015 CD4 420 30% UD
Jul 2015 CD4 480 32% VL51 !!
Sep 2015 UD
Feb 2016 CD4 460 35% UD
Aug 2016 CD4 378 33% UD

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Shame, guilt and fear - just tested positive
« Reply #22 on: June 08, 2011, 08:28:42 am »
Sorry to hear about that, Cojo.

Enough with the talk of "waiting to die". Haven't you heard the news? Hiv is no longer a death sentence. Plenty of people live fulfilling lives despite hiv. I understand you're still in the shock stage of diagnosis, but really, you're going to be ok.

You'll have to wait and see what your numbers are like before you decide where you go from here, but please try to understand that today's meds are very effective and well-tolerated. You may not even need the meds for some time yet if you are correct in your assumption that you are dealing with a new infection.

Hang in there, you're going to be ok, really you are. Enjoy your holiday!

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 skeebo1969

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Re: Shame, guilt and fear - just tested positive
« Reply #23 on: June 08, 2011, 09:52:41 am »


  Cojo,

     I've been watching this thread, reading your story, and was pulling for a negative result for ya with the WB test.  Sorry the results were not what we hoped for.   I know how you feel right now because I went through it all 6 years ago.  I waited till I was 36, and like you, beat myself up because I knew better. 

     Forgive yourself brother.  It's no easy task, but it is an important first step to accepting your diagnosis.  It's great that you found this place so soon after diagnosis, I wasn't afforded this luxury.   It got so desperate my second night that I called the CDC at 3am blabbering to some poor girl who sounded every bit of 18.   She was great though, stayed on the phone with me for 45 minutes.

     You got this place, us, a rock hard group for support filled with the knowledge that will help you to understand what you need to know about living with this virus.  It's important, trust me; and it helps ease that anxiety you are feeling now as you read others' stories here.     

     Like Ann said, things are going to be ok, so hang in there man.  Welcome to the forums.

    Skeebo 

     
I despise the song Love is in the Air, you should too.

Offline drewm

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Re: Shame, guilt and fear - just tested positive
« Reply #24 on: June 08, 2011, 10:27:20 am »
Cojo, welcome to the forums. Sorry about your dx but trust these folks (and myself) when we, in chorus tell you, it's not the end of the world.  ;)

HAART is extremely effective in treating HIV and even turning back the hands of time on AIDS. Hang in there, breathe deep, listen and learn and ask questions  :)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline jacken

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Re: Shame, guilt and fear - just tested positive
« Reply #25 on: June 08, 2011, 10:38:11 am »
Cojo, sorry to hear about your confirmatory result.

I don't have anything more to add than just to give you lots of hugs. Like others have said, things are going to be ok.

Safe trip and let us know how you are doing.

 


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