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Author Topic: Overwhelmed  (Read 3945 times)

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Offline DCNEW

  • Member
  • Posts: 10
Overwhelmed
« on: March 05, 2014, 11:58:16 AM »
Tested positive last Thursday - first labs came back today. 109 CD4 and 85000 viral. Seems I've been infected for many years.

Surprised by the numbers. Doctor put me on meds to prevent OIs. 

Have to wait until genome test comes back in another three weeks before I start meds.

To say I'm overwhelmed would be an understatement. This past week has been a roller coaster. Depression and anxiety thru the roof - hard to complete even the simplest daily tasks.

How scared should I be? How should I alter my daily routines until I get my numbers under control? Dr. said that my CD4 may never increase. So confused.

Advice?


Offline Irish Eyes

  • member
  • Member
  • Posts: 459
Re: Overwhelmed
« Reply #1 on: March 05, 2014, 12:24:38 PM »
Diagnosis is scary and the mind runs riot for a couple of weeks, with every scenario.
There's nothing that will ease the initial guilt, stress and fears other than absorbing the stories of others in the same position.
Your CD4 may not increase though you are unaware of what your number was prior to finding out.
Be advised that there are many here that have been positive for 20+ years and have full and successful lives.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43

Offline Joe K

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  • Posts: 3,780
  • 31 Years Poz
Re: Overwhelmed
« Reply #2 on: March 05, 2014, 01:19:00 PM »
Hey DC,

I'm sorry to hear of your diagnosis, but glad you found your way here.  Becoming poz is one of the greatest challenges you will ever face, so be kind to yourself and for right now, simply allow yourself to feel, whatever you feel, without the need to do anything about any of it.  I know your mind is in overdrive and that is perfectly normal.  It takes time to adjust and please feel free to ask questions or simply vent about issues that concern you.

I also empathize with your fears regarding your health, however, you are being treated and there is no reason that the meds will not work for you.  For me, our numbers are but one indicator of our health and should be tempered against how we actually feel.  I simply caution you about worrying about your numbers too much, because we have limited ability to change them.

What will help is for you to be kind to yourself and that includes your body, mind and spirit.  Learn to understand what you body tells you and realize that you are much more than the results of tests.  I also hope you believe that you have done nothing wrong and that you are the same person today, as you were prior to diagnosis and the ONLY difference is you are now poz.

I have no magic that will make your adjustment to being poz any easier, as time is really the only solution.  What I can offer is that you can live your life your way, if you take the time to invest in the one person that matters: you.  It will get better with time, I promise.

Until then, we are here for you.  While we cannot tell you how your journey with HIV will be, we can be there to walk with you, every step of the way.

Welcome to the forums.

Joe

Offline pittman

  • Member
  • Posts: 226
Re: Overwhelmed
« Reply #3 on: March 05, 2014, 08:55:08 PM »
Tested positive last Thursday - first labs came back today. 109 CD4 and 85000 viral. Seems I've been infected for many years.

(. . . .)

How scared should I be? How should I alter my daily routines until I get my numbers under control? Dr. said that my CD4 may never increase. So confused.

Advice?

At this point it seems silly to be told by your doctor that your number may never increase. Based on what exactly?!  It is true that those starting with lower numbers typically take longer to rebuild their immune system. It is also true that natural variations exist in people in what their "normal" state or range is and in how they respond to treatment.

Read through the forums and you will see many who started with cd4 counts close to zero who have had some remarkable recovery stories.

As far as alter your daily routines, just some basic things:
- Take the meds from the doctor to protect yourself while your immune system rebuilds, and once you start your antivirals, take them consistently.
- Eat healthy.
- If you smoke, stop.
- Get a regular good nights sleep.
- Until your immune system rebuilds, avoid raw and under cooked meats, fish and eggs. No unpasteurized milk.
- Take some *reasonable* precautions around anyone with a cold/flu. Wash your hands, don't touch your face, etc.

In short, you will notice that all of that is just basic, general recommendations that also could apply to any one. Point being, outside of some common sense items anyone would benefit from, there is not a whole lot to do outside of the norm.

Joe K already said to be kind to yourself. I like that so much better than "don't get stressed" which seems unrealistic for most who are just diagnosed. So instead, accept that it will get easier, and allow yourself the time to adjust.


Offline DCNEW

  • Member
  • Posts: 10
Re: Overwhelmed
« Reply #4 on: March 06, 2014, 08:24:55 PM »
Thanks all for the constructive and positive comments. I can not thank you all enough - this site has been a God send.  :)

Over the past few days I have mustered up the strength (with a little help from anti-anxiety meds) to face this head on. I really don't have any other option. In truth, I am in a much better position than I was a week ago. I know my status, the overall state of my health - - and there is an action plan to turn it around. I am not going to die today - and all I can do is move forward towards tomorrow, be optimistic and follow the advice of my doctors. Sure it won't be easy - but it can and must be done.

Over the past week I have turned to this site and all your personal stories repeatedly for strength and inspiration. I am by far alone in this mess. There are many who were in a much worse position than I - and have done just fine. I will too, I have no reason to believe otherwise.

Again, thanks to all for sharing your stories and advice. God bless.
 

Offline Irish Eyes

  • member
  • Member
  • Posts: 459
Re: Overwhelmed
« Reply #5 on: March 06, 2014, 10:12:07 PM »
Accepting the dx and knowing you still are the 'same' person as b4 dx your future is all ahead of you.
Only for this site I don't know where i'd be. For me the most cathartic thing was sitting and spitting out my story and receiving the answers to my questions. Kudos to all.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43

Offline anniebc

  • Member
  • Posts: 5,942
  • AM member since 2003
Re: Overwhelmed
« Reply #6 on: March 10, 2014, 05:09:43 AM »
Hi DC

Welcome to the forums, I can't really add much to what the guys have already told you, but this is my standard rely to new comers, hope it helps a little.

Reaction to the results is difffernt for everyone, but over time you will find a way of coping with the virus that suits you and it might be quite differnt from how others deal with it.

No one here will ever tell you it's easy, it's ok to get angry or scared but don't let it take over your life, stress is natural it can actually help some of us get through certain situations, but excessive stress can cause you physical symptoms and can damage your immune system further, just find ways to manage any stress you may be feeling, learn to relax and listen to your body.

Along with HIV comes anxiety, and one way of tackling this is through information. gaining confidence in yourself and making informed decisions about your future.

Support is very important and you can get this from a qualified ID doctor, family and friends that you trust, and there are many support organizations out there...just make sure whoever you discuss this with is sympathetic, supporting and non judgmental about your HIV status.

Most important of all you have to remember that being HIV+ does not stop you from being the person you were before your diagnosis.

Stay strong

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

Offline aaware72

  • Member
  • Posts: 226
Re: Overwhelmed
« Reply #7 on: March 10, 2014, 12:27:46 PM »
Tested positive last Thursday - first labs came back today. 109 CD4 and 85000 viral. Seems I've been infected for many years.

Surprised by the numbers. Doctor put me on meds to prevent OIs. 

Have to wait until genome test comes back in another three weeks before I start meds.

To say I'm overwhelmed would be an understatement. This past week has been a roller coaster. Depression and anxiety thru the roof - hard to complete even the simplest daily tasks.

How scared should I be? How should I alter my daily routines until I get my numbers under control? Dr. said that my CD4 may never increase. So confused.

Advice?

It will be okay... 

I wanted to mention a couple things.  In my opinion get another doctor as the comment from your doctor saying that you CD4 may never recover is a terrible thing to say to someone!  Just because your CD4 count is low does not mean you had HIV for a long time.  In my case I test positive Jan 13 which was 7 month after my last negative test and my CD4 was 230.  I been UD since May CD4 count has rebounded and hovered around 400.  My current partners ex had a CD4 of 6 when they found out.  If anything I've learned it the CD4 counts will come back, but it could be a slow and long road. 

Yes you are now poz, but that does not need to change your life.  You will get on meds and you will be okay!
"Yes, knowledge is power. Self-knowledge brings mastery of one's body."

Offline DCNEW

  • Member
  • Posts: 10
Re: Overwhelmed
« Reply #8 on: March 28, 2014, 06:44:01 PM »
It has been over a month now - and wow - what a month it's been.

My standard schedule has been overtaken with doctor's appointments - from several visits to dentist for abscessed tooth, therapy sessions, and follow up with my regular doctor - I feel like I am in medical offices everyday. I know this will slow down with time…but it seems like my whole life is centered around this freaking disease.

First came the blood work that pointed to something seriously going wrong with my liver. With a little time - and thank God some luck - Dr figured it out. No hepatitis confections.which was the major concern. Still watching them - but numbers have come back down to normal.

Finally started meds last week - combo of Truvada, Norvir & Reyataz.  Within 3 days - my back, hands and feet were filled by a nasty looking rash. Hands and feet swollen and even hurt to walk. Doesn't really itch - and at first they thought it was due to one of the antibiotics I have been on to prevent OIs. It has remained pretty much the same after stopping those meds - and now am quite scared it is the HIV meds that are causing this reaction. I know I can switch meds - but fear loosing the first option of treatment suggested by the doctor. Anyone had this issue?

Trying my best to maintain positive thoughts and outlook. Beyond impressed and grateful for the team of physicians, etc caring for me - but still nervous and scared.

Again, this forum has been such a positive and uplifting outlet for me….thanks to all for the support and advice.




Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Overwhelmed
« Reply #9 on: March 29, 2014, 05:19:39 AM »
DC, have you contacted your doctor? If you haven't, I suggest you do so ASAP.

While a rash that lasts about a week or so is very common when first starting meds, the swelling and pain you describe is unusual and quite concerning. Please contact your doctor about this.

If the swelling gets worse or you start getting a fever - or things get worse in any way - go to your local ER if you cannot get a hold of your doctor. Take your meds (everything you are currently taking), in the original containers, with you.

Keep us posted!

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 Theyer

  • Member
  • Posts: 2,534
  • Current ambition. Walk the Dog .
Re: Overwhelmed
« Reply #10 on: March 29, 2014, 05:33:37 AM »
DC just like to say hi and I think you have dealt with the past month with courage , things will change and better days are coming . I understand completely the sense off living the past month in hospitals and have often thought one has to be really fit to be so ill.

All the best
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline DCNEW

  • Member
  • Posts: 10
Re: Overwhelmed
« Reply #11 on: April 03, 2014, 07:44:04 PM »
Thanks again for all the responses.

Turns out it was the Bactrim … thankfully not the HIV meds. Rash and swelling slowly going away. Feet got so swollen normal creases in my foot opened up and bled like I cut them with a knife. So other than walking being painful….I am thankful that we figured it out and I won't have to change meds so soon after starting. Gotta look for the upside, right?

I've tried to remain active - but my fatigue is exhausting. Not new to the HIV, but it has gotten worse. Doctor placed me on anti depressant and anti anxiety meds - which help mood - but make me even more tired.

Within two weeks after starting meds tho - my oral thrush and OHL are gone. So, that's more good news!!!

Sorry for the depressing update - but there is a lot to be thankful for too…gotta always remember that.

Hope everyone out there has a wonderful week! Again, I don't know what I'd do if I didn't have all these positive stories to read from you all!


Online Jeff G

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  • Member
  • Posts: 12,160
  • How am I doing Beren ?
Re: Overwhelmed
« Reply #12 on: April 03, 2014, 07:46:13 PM »
That's not depressing, its a good update and thanks for sharing . So happy you are on the mend . 

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Overwhelmed
« Reply #13 on: April 04, 2014, 05:32:24 AM »
Whew! I'm glad you got it sorted - that swelling you described had me worried.

Good to hear you're experiencing improvements in other areas as well. Onward and upward! :)
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

Online Jeff G

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  • How am I doing Beren ?
Re: Overwhelmed
« Reply #14 on: April 04, 2014, 08:40:00 AM »
Whew! I'm glad you got it sorted - that swelling you described had me worried.

Good to hear you're experiencing improvements in other areas as well. Onward and upward! :)

We did have a guy in AM I INFESTED the other day who thought he had aids because his toe was swollen so its not without precedent .

Offline gadawg1979

  • Member
  • Posts: 142
Re: Overwhelmed
« Reply #15 on: April 06, 2014, 10:15:32 AM »
One day at a time and things will come around. I was in a similar shape with numbers and then when things started to come around my immune system started to attach my body... Then the steroids.  I stuck with it and things are look better two years later.  Chin up... Talk here and vent it out.
Diagnosed March 2012
Initial CD4- 156 VL 200K (started Complera) Genotype test no resistance
First labs on meds CD4- 246 VL 2K Taken after 30 days on Complera
90 Day labs VL 306 No CD4 Drawn
8/21/2012 CD4 474 VL Undetectable (40) %20.6
11/27/2012 CD 4 522 VL Undetectable (40)
2/14/2013 CD 4 464 VL Undetecable (30) 19.6%
6/8/3013 CD 4 528 VL Undetectable (30)
9/24/2013 CD 4 546 VL Undetectable (40)
1/30/2014 CD4 560 VL Undetectable (40) 22 %
6/19/2014 CD4 584 Vl Undetecable (30)

Offline DCNEW

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  • Posts: 10
Re: Overwhelmed
« Reply #16 on: April 17, 2014, 10:16:57 PM »
Thanks all for your support. It means a great deal to know I am not alone.

After the allergic reaction to the bactrim, the dr. prescribed dapsone when the rash and swelling had gone down. After a week on dapsone, I have fever, somewhat productive cough, and overall feel like complete crap. More blood work, more visits - I honestly am in the office almost every day of the week since diagnosis.

Feeling quite scared and overwhelmed at the possibilities of what all this means - and so angry at myself for waiting so long to be tested.

I know I am in better shape than so many here - and I feel quite ashamed ranting. But when does this - if ever - get any easier. I am exhausted…mentally and physically. I can barely accomplish the smallest tasks.

Offline DCNEW

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  • Posts: 10
Re: Overwhelmed
« Reply #17 on: June 25, 2014, 05:20:47 PM »
Just a quick update...

Just got my first cd4 count back after starting meds in March. Increased from 109 to 244! While my percentages are less impressive, they at least doubled...and that's something to be thankful for.

My viral load went down from 85000 to now 90....almost to that 20 mark.

Since diagnosis in March, 3 bouts of pneumonia...continuous digestive issues...and increased anxiety.

But TODAY...these numbers were a huge boost to my moral. :)

Thanks to all for the talk....this site has been amazing!

Online Jeff G

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  • How am I doing Beren ?
Re: Overwhelmed
« Reply #18 on: June 25, 2014, 05:56:39 PM »
Congrats DC ... I bet you are undetectable already now if it was that low at lab time . I never get tired of a good lab day story so thanks for sharing .

Offline tryingtostay

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Re: Overwhelmed
« Reply #19 on: June 25, 2014, 07:20:41 PM »
Just a quick update...

Just got my first cd4 count back after starting meds in March. Increased from 109 to 244! While my percentages are less impressive, they at least doubled...and that's something to be thankful for.

My viral load went down from 85000 to now 90....almost to that 20 mark.

Since diagnosis in March, 3 bouts of pneumonia...continuous digestive issues...and increased anxiety.

But TODAY...these numbers were a huge boost to my moral. :)

Thanks to all for the talk....this site has been amazing!

That's great news!  Makes me feel good :)

Keep us posted! :)

Offline TheDancingCookie

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  • All will be well.
Re: Overwhelmed
« Reply #20 on: June 30, 2014, 01:58:19 AM »
Hi DC,

Earlier in your posts you mentioned this: 'First came the blood work that pointed to something seriously going wrong with my liver. With a little time - and thank God some luck - Dr figured it out. No hepatitis confections.which was the major concern. Still watching them - but numbers have come back down to normal.'

Could you please let me know what the issue with your liver was?  Diagnosed HIV+ on Friday and the only reason I was tested is that I was hospitalised with liver problems though no one has been able to figure out why - the HIV test was one of a raft they did as a matter of course.  Needless to say I'm in shock but on top of the diagnosis I still have the original problem of my liver being inflamed.  Could you let me know what your doctor figured out? 

Offline TheDancingCookie

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  • All will be well.
Re: Overwhelmed
« Reply #21 on: June 30, 2014, 03:10:10 PM »
Not sure why this comment has turned into its own topic - it's actually a question on a thread by DCNEW.

Online zach

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  • not fade away
Re: Overwhelmed
« Reply #22 on: June 30, 2014, 03:24:30 PM »
here i thought DC meant dancing cookie, and you were speaking to yourself

no shame, i do it all the time
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline TheDancingCookie

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  • Posts: 16
  • All will be well.
Re: Overwhelmed
« Reply #23 on: July 01, 2014, 02:55:10 AM »
All good  :). So to confirm, DCNEW I'd love to know how your liver issue was resolved in case I can learn.

 


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