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Author Topic: Hello! I am new here...  (Read 3843 times)

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Offline HereIAm

  • Member
  • Posts: 68
Hello! I am new here...
« on: October 20, 2008, 07:24:40 PM »
Hello Everyone:

I have been lurking/reading on here for about a month or so and have been registered for, well, a couple of weeks, I think.  I am not sure why I am writing other than to introduce myself and share my story. 

So, here goes. 

I have just tested positive.  This was a shock to me.  I have had an eleven year "monogamous" relationship which I ended because it apparently wasn't monogamous some three years ago.  I tested negative several times after and felt ok.

All summer I have been unbelievably sick.  Sicker than I have ever been in my life. I am a professional in our community and went to six different "very good" physicians with fever, bad sore throat, general malaise, weakness and then pretty dramatic weight loss. 

After testing negative in May, I received several very concerning and even frightening diagnosis during the summer:  lupus, leukemia, bone marrow cancer.  Each of those things were ruled out and I remained sick sick sick.  Finally, out of frustration, I was going to fly to the Mayo clinic at the insistence of my dad.  He was coming to go with me.  Then, the primary care doctor said let's start all the tests over.  Let's test for everything from Lyme disease to hiv etc.... 

Apparently, I am some sort of freak of nature, of sorts.  Though, I don't fully understand this yet, but, apparently, I don't really make antibodies to the virus like most do.  But, the test indicated enough of a concern that the doctor said it is honestly the only thing it can be.  So, off to the HIV doctor I went.

Here is the really scary news:
VL 770,709    CD4 23   (1%).   Plus, the sore throat was thrush and the weight loss was wasting disease.  So, I went from thinking I was not positive and being very sick to learning I had HIV and being very sick.

In a way, this was good news as HIV is much more treatable than the other things they were thinking of late.

Here is the good news:
I was relatively quickly put on Atripla (and a few other things to prevent OIs and to treat the thrush).  Now, I feel better than I have since April!  And, the only side effect I seem to have had is that I had vivid dreams for two nights and have chapped lips.  So, that seems like good news to me.

As a newbie, of course, I have a bunch of questions.  I don't expect you all to know all the answers or even answer any of them.  But, you know, I just wonder these things.  Will I ever really feel better?  Will I recover my CD4 cells?  Will I ever feel like dating (because I just don't physically feel like it as opposed to some moral or spiritual reason)?  Will I get mad?  Will I get sad?  Should I see a therapist?  Right now, I find myself in the funny situation of being glad it is HIV and not some of the more fatal illnesses that were initially thought.

Thank you all for reading this and for the welcomes that I am sure are to come.  I am sure I will keep you posted of my progress, as it were, over time.


Tested Positive 10 Sept 2008.
24 Sept 2008:  CD 4: 23;   1%;  VL: 770,709
1st Oct 2008:  Started Atripla
4 Dec 2008:  CD 4: 145; 8%, VL: 209
1 March 2009:  CD 4: 91; 8%, VL: 49 (undet)
1 June 2009:  CD 4: 164; 11%, VL: 61
8 July 2011:  CD 4: 286; 17%, VL Undet
28 Oct 2011: CD 4: 346; 21%, VL Undet
2 Mar 2012: CD 4: 316; 20%, VL 6800 (probably an error)
12 Apr 2012: CD 4: 333; 21%, VL Undet

Offline Assurbanipal

  • Member
  • Posts: 2,175
  • Taking a forums break, still see PM's
Re: Hello! I am new here...
« Reply #1 on: October 20, 2008, 07:55:56 PM »
Hello ... and welcome to the forums.

I was in a similar position to you a couple of years back.  I had months of pneumonia and a Tcell count of 40 when diagnosed.  I sympathize with what a relief it is to know what is wrong and to have a way forward.  And to answer your question, yes -- many of us have gotten better and often over a period of weeks or months on HAART.  If, to date, you have avoided AIDS related illnesses ("OI's") except thrush you may well recover with no permanent damage.

But there are some special challenges for those of us who are "diagnosed late".  You should recognize that until your immune system has a chance to recover you are at significant risk of serious illness.  It's important to take what steps you can to protect yourself from sources of illness including stepping up hygiene and hand washing, getting a friend to change the kitty litter, making time for all those doctor appointments, getting enough sleep, protecting yourself from others' germs, etc. 

There's a host of good information on this website.  If you haven't yet found the lessons they are here:

So ... welcome, stay well, know that we are all with you.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: Hello! I am new here...
« Reply #2 on: October 20, 2008, 08:19:04 PM »
Hello Here, welcome and congratulations on your improved health.

It does get better, including CD4 counts.  My own is slow to recover, but shows improvement with every test.  You can probably help it along with a healthy diet and personal habits.

I can't speak to your sex life as I don't know the particulars, but the only limit on mine since diagnosis are my own.
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline mecch

  • Member
  • Posts: 13,385
  • red pill? or blue pill?
Re: Hello! I am new here...
« Reply #3 on: October 20, 2008, 08:28:27 PM »
Hello newbie HEREIAM

Welcome to the forum and thanks for sharing and coming out of the digital woodwork.  And of course, sorry also to hear of your HIV diagnosis and summer of hell and all that uncertainty.

First as you know, and can feel by reading the threads here as well, you are not alone, and you will get through this time. 

I want to tell you something really quite uncanny – that your experience is strangely like mine. I left an 11 year relationship last summer 2007, as my bf was always in love with other guys, and when I came out of denial and saw that, it was huge shock.  I was HIV- at Xmas 2007.  Then in May of 2008 I was strangely sick. And they tested me for everything and in some very good and chic clinics.  Finally they discovered I am the same “freak of nature” as you – I have HIV and don’t produce much of any antibody response.   

In another thread I wrote something that I think you could hear as well.  A friend who survived horrible cancers realized with the advice of his specialists that in fact, many people who have a serious disease also have something really unique and unexpected sometime in their experience with the illness.  Someone might have a miraculous recovery. Another person might be allergic to very essential medicine, and die. Etc. etc. The art of medicine is finding the treatment for the individual.  A good ID doc will serve you well.

I hope that your special exception is, then, just like mine and that we both are “saved” by such early HAART treatment.  Once my docs figured out it was a soring HIV viral load that wasn’t going to come down, they put me on HAART and every specialist I have contacted said HAART should work just fine, even though I’m a rare case, like you.

Maybe in the end we aren’t so rare. My ID said he has had 3 in his career.

“Here is the good news:
I was relatively quickly put on Atripla (and a few other things to prevent OIs and to treat the thrush).  Now, I feel better than I have since April!  And, the only side effect I seem to have had is that I had vivid dreams for two nights and have chapped lips.  So, that seems like good news to me.”

And how are your labs?  I am hardly an expert, there are lots of very knowledgeable members who will comment. But yeah, it soulds like my experience, and just wondered if you are undetectable yet?  770,000 may sound astronomical but many start HAART in the millions.  Your CD4 is serious news, however, sorry about that.

“As a newbie, of course, I have a bunch of questions.  I don't expect you all to know all the answers or even answer any of them.  But, you know, I just wonder these things.” 

So I will give you my two cents, one biological rarity and newbie to another…

Will I ever really feel better?  Yes, and if you notice, you say you already DO feel better. The summer of hell is behind you, remember!

Will I recover my CD4 cells? Ask your Dr and wait for the experts here to explain. Plus you can do the research on the Internet.  Its fascinating if you can take it from some distance…. Although that’s difficult to do, I did sit in bed this summer, like you, with acute HIV and read a lot about the science.

Will I ever feel like dating (because I just don't physically feel like it as opposed to some moral or spiritual reason)?

---Yes!!!!! Though I haven’t figured out how I am going to be alluring with the recent shellshock of being both single and HIV+.  You had two bombs close together, take it slow.. That’s grandmother’s orders, and my therapist's.

---Will I get mad?  Yes. Do you know Kubler-Ross’s model of grieving – it puts divorce and serious illness in perspective.

---Will I get sad?

Hmm, aren’t you already a bit? If not, kudos to you. But it might be coming. See Kubler Ross, above.

----Should I see a therapist? 
Why not.  If you give it a stab and it doesn’t do much, give it up.

---Right now, I find myself in the funny situation of being glad it is HIV and not some of the more fatal illnesses that were initially thought.
I agree.  Kinda, Sorta. Nah, i wish I didn't have HIV virus, but something curable. But HIV is often quite "fixable", and I do have it, so there's not much to but soldier on. So yeah I agree, better than dying. Plus there are good things that come from such adversity.

I wish you all the best.  Look forward to reading other posts.  And get well soon, as they say!

« Last Edit: October 20, 2008, 08:32:10 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline pozmnguy

  • Member
  • Posts: 32
Re: Hello! I am new here...
« Reply #4 on: October 20, 2008, 11:12:13 PM »
Hello HereIam and welcome to these forums.

I can relate to your numbers as mine were similar when I was diagnosed in April.  I have had great success with Atripla and hope the same for you.  One recommendation I would say is don't skip any doses.  Taking meds consistently is key.

As far as your other questions I can only speak from my personal experiences.  I think I am going through this for a reason.  What it is I don't know but I plan on making a difference.  I have never gotten mad or sad.  I when diagnosed told all my friends and immediate family and have had nothing but amazing support.  Heck this summer I had friends in from NY and Boston for Gay Pride and had a Pre Bar Happy Hour at my house and half way through realized that out of the 15 people that were there 10 were Poz.  So maybe that kind of surroundings make me feel like I'm certainly not the only one.  I do however recommend getting professional help if you are struggling at all.  Also remember there are some amazing people here with good hearts and tons of knowledge.

One more thing.  I did find that I started to suffer from some depression issues caused by the Atripla.  I've heard some people with the same experience and many that did not but you may want to keep one eye open to that.

Best of luck weeding through it all and remember you can always private message if you need anyone to talk to.

3/08   Diagnosed
4/08  CD4  34           VL     537,000   Started Atripla
5/08  CD4 144    8%  VL        1,010
9/08  CD4 141    8%  VL            60

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 31,900
Re: Hello! I am new here...
« Reply #5 on: October 21, 2008, 08:04:16 AM »

You've been on quite a trip lately. I'm glad you found your way to our site.

Will you be sad? I can't predict what your feelings are going to be although I daresay they will just change from time to time and even moment to moment as is pretty common for anyone, whether HIV+ or not. A therapist might be helpful at some point if you find yourself confused or overwhelmed. Depending on where you live there maybe an ASO which can offer counseling and support groups.

Having a good working partnership with your doctor is one of the best things you can have to get and keep you well. As your meds kick in you're going to be feeling more like your usual self. That will help you to see that life is going to go on and that it's going to be about a lot more than just HIV.

You can always discuss anything you want to here and ask any questions you may have. Gradually you'll begin to know whatever you need to. You're already getting some of the support from others which makes this a special and safe place.

Welcome and drop in as often as you like.

Andy Velez

Offline Joe K

  • Standard
  • Member
  • Posts: 5,820
  • 31 Years Poz
Re: Hello! I am new here...
« Reply #6 on: October 21, 2008, 12:00:56 PM »
Hello HereIam,

My name is Joe and I have lived with HIV for 24 years.  I have been on meds for over two decades and I lead a wonderful life, in spite of my medical challenges.  Like you, I became deathly ill, during my conversion and it took me years to recover.  However, we had no drugs to treat HIV in 1985, yet I survived and given the drugs today, you sound like you are on the way to a good recovery.

If I may, I would suggest the following.  Take your time, be good to yourself, and take care of your mind and body.  This site has a wealth of information, in the lessons and they can answer many of your questions.  If there is something you do not understand, please feel free to discuss it in the forums.  You have received life-altering news and each of us reacts differently to the situation and there is no right or wrong way to adjust.  All that matters is that eventually you will adjust and believe it or not, HIV will become just another facet of your life.

You will experience wild mood swings, moments of abject fear and feelings of hopelessness, all of which are perfectly normal.  It is not uncommon for someone to take a year to adjust to their status, so just take your time.  Time is on your side and since you are being medically treated, you might want to consider talking to a professional, if you think that may help.  I mention this, because I also suffer from depression and it can develop rather quickly.  My point being, if you feel funny and you think you need some help, please get some.  We also have a Mental Health forum, if you feel the need.

You did nothing to deserve HIV, however, most of us go through a period, where we feel damaged by our HIV infection.  Again, perfectly normal, but you must not allow such thoughts to linger.  You must work at becoming your own best friend, so that you can learn to forgive yourself, for whatever role you may have played, in becoming positive.  You must learn, when to fight and when to accept things, that you cannot control.  Most important, is that you must keep your stress level down, as stress can be very damaging to us pozzies.

You are embarking on a journey with HIV and while we cannot tell you how your journey will be, we can be there to walk beside you.  There is an indescribable amount of love here and you will not find a greater group of people, anywhere.  You are family now, so feel free to join any of the discussions.

And since you are family, one last friendly piece of advice.  Please refrain from referring to yourself as a "freak of nature", as the term implies there is something unnatural about you.  Far from it.  You simply possess a different biological state, with some unique characteristics.  Period.  I believe we do a great disservice to ourselves, when we use derogatory terms to describe ourselves.  No my friend, you are a pozzie, just like us and as such, you are as unique and special as they come.

Once again, welcome.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Hello! I am new here...
« Reply #7 on: October 21, 2008, 02:22:15 PM »
Hi Here,

Well, I cannot answer any of your questions about the future,  but you seem to be a fairly intelligent person, so I would predict that in a year or two, you'll be doing just great.  Like Joe above, I was given a death sentence in '83, but that certainly didn't work.  I was also one with 20 CD4s when finally succumbing to the bug in '94.

I want to let you know that since I was diagnosed 25 years ago, I have owned three businesses, started two AIDS service organizations, and moved four times, in three states.  I just wanted to tell you that to help you focus on the fact that you now have a bug on board, but you certainly are not going to be directed by this bug in the future.  When you find stability with your health, then the sky is certainly the limit, so buck up and start getting yourself healthy and moving on forward.

In the mean time, make sure to drink only filtered water, and for the time being stay away from deli meats, and anything not thoroughly cooked.  When you get your immune system back, you can then be less fastidious, but for now it is really important to keep whatever goes into your body really clean and free from bacteria.  For now, your immune system just doesn't need it.

I hope this helps.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne


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