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Author Topic: tested positive 11/20  (Read 7349 times)

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Offline koi1

  • Member
  • Posts: 713
tested positive 11/20
« on: December 23, 2006, 02:48:05 PM »
 I just tested positive a few weeks ago (11/20/06). I have been struggling with digestive issues for a while and was not getting any better. I am wasting away having lost 25 pounds.

I decided to get tested because after an exhaustive array of medical examinations and tests, nothing could be found to be causing my digestive illness. I went to an anonymous site and after a 20 minute interview on my sexual/drug use behaviour my results came back. "I'm sorry, but your results are positive." said the counselor. I was stunned. I asked him about the reliability of the test and he told me it was pretty accurate. He did another test which required more rubbing of the gums. The counselor tried to get me to talk about my feelings, but I assured him that I was fine and that I didn't plan on killing myself just yet. Though I had suspected something horribly wrong with my body, one is never ready for such news. I said, "Yeah I kinda had a feeling it might come back positive, but I didn't think it would." I just told him that I wanted to go. I walked out of the little room cheerful so as to not let my friend who went to get tested with me know. His was negative. And he asked me what my result had been. "Do you really want to know?" "Yes," he said. I told him and his jaw dropped and he started to cry. I did not have such a reaction.

I was numb up until a few days ago when I finally broke down and cried.

Immediately after I was rediagnosed at another anonymous testing sight, I went to Kaiser and insisted on getting an appt. with my regular doctor. They told me he was going on vacation for 3 weeks and I would have to wait. I was desperate and I told the receptionist of my diagnosis. They called me back and said I could see him on his on call time. I let my doctor know of my status. He ordered a test to confirm and a T cell count. He scheduled me to see a specialist three weeks later. That day I also told him that I was having trouble breathing. He checked my breathing with a stethescope and insisted I was fine.

I started to worry that I might have pneumonia and my gastric problems were not going away. So I tried to schedule an appointment with my gastrointerologist. I got the sam spiel about him going on vacation. Once again I had to use the HIV card. They gave me an appt. the next day.

He started out our session by asking me how I was doing and I told him well considering the circumstances. I asked him why he had told me that my CD4 count had been normal 4 months ago and he said that the lab messed up and that he never really had had those results. That made me angry because he had lied to me, but at this point I needed him to help me. I told him that there was no way my cd4 count could be normal and that he should check the test my doctor had just ordered a few days ago.

He told me that he couldn't see it on the screen and invited me to look at his monitor. I saw it and felt my heart drop. I told him where it was on his monitor. I told him that it was low and he insisted that it was not that bad. I told him that I needed to see a specialist asap. He told me that would not be possible and that I already had a nice 90 minute appt. scheduled in two weeks. I said, "Listen this is serious, you already caused me enough delay by lying to me about my cd4 count. The least you could do is call up stairs and get me an appt." He could see the anger in my eyes and called up stairs to the infectious
diseases dept. "Uh, I have a nice young man here who would like an appt asap." They asked him what my cd4 count was and as soon as they heard 97 they told him to send me up there immediately.

I met with a great doctor and a team of nurses, a social worker, a pharmacologist, and a dietician. They started to calm my fears. I told the doctor about my trouble breathing and she sent me to get my chest x-rayed. It came back indicative of pcp. She introduced me to all of their staff. Discussed my condition with me. Told me I had AIDS. Got me on bactrim, ordered a battery of blood tests, an array of STD tests, a sputum test to confirm pcp, a genotype/drug resistance test...

Everyone was super nice and compassionate. The pharmacologist discussed my treatment regimen that would most likely be prescribed pending test results that would take 3 weeks. She calmed my fears by telling me that a lot has changed in managing this disease and that my prognosis was good. The Dr. set up an appt for three days later. I went in and they confirmed that I had pcp with the sputum sample results. However the Bactrim did wonders and my chest did not hurt anymore when I went to that appt. The pcp diagnosis was crucial because I could have ended up in really bad shape in the hospital. This shows how important it is to have a good specialist on your side. That day she also told me that luckily I had no other std's and no hepatitis b or c. One of the nurses made me laugh by saying, "Yeah you are a lucky guy, you should see some of the cesspools that walk in here." Gee, I wonder what she says about me when I am not around.

Ten days after starting Bactrim, I developed a bad reaction to it that put me in the hospital with a severe rash, fever, and dehydration. The day the symptoms started I had had traumatic episode with my family because my ex had taken it upon himself to tell them about my status. They confronted me and I had a
traumatic reaction to their confrontation. I just thought my rash was stress related. Calling the kaiser help line made it worse because they told me to just take benadryl and not stop the bactrim.

I spent 3 days in the hospital when my symptoms worsened. They ran a million tests to rule out any other infection. An MRI, a CTscan, a spinal tap, xrays, blood, urine feces. The spinal tap was excruciating and I yelled my ass off. 3 days later they were convinced that it was an allergic reaction to the bactrim, and I was put on Mepron for my PCP. While in the hospital my team visited me which made me feel good, because they really do care, I just got a good feeling. My spinal tap which tested for dozens of diseases came back negative.

Well I waited weeks for the drug resistance/mutation test to come back. My social worker called me at home and told me to come in for a chat. I told him that it would be great to get out of the house. I went there and we talked about life and how I am adjusting. I told him about my crying fit of the day before. He said it was good that I am feeling and not numbing my pain. I also had the nice surprise of getting my drug resistance test results that day. My pharmacologist told me that treatment options looked good because it had come back as a "CLEAN" virus, sensitive to all medications. The only thing wrong was that during my hospital stay they had done a liver function test and that was abnormal. She said it was probably due to the allergic reaction to bactrim and that before starting me on any medications she would have to run the test again to make sure my liver was in good enough shape to begin HAART.
That day I also met with the dietician to improve my Calista Flockhart look.

So I didn't get to start the meds that day. I am now going in on the 26th to hopefully start on Truvada and Sustiva.


A lot has happened in a month. Had I been more informed on the importance of knowing my HIV status, I would have gotten tested earlier. But that denial is a tricky thing to overcome. What I have learned is that you have to advocate for yourself and fight to better your health. Had I not fought for earlier appts. I would be two weeks behind. The anxiety because of what this virus is doing to me without treatment is painful. I hope so much will be resolved when I start my meds. I have a lot of hope. My shame is subsiding, my anger towards myself is diminishing. Yes, I was stupid, but the smart thing to do now is fight this virus head on and take care of my ravaged body.

I am sorry my story is so long, but it helps me by sharing my experience. Thank you for having such a great site, full of hope, love, and compassion.


rob

diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline J.R.E.

  • Member
  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Re: tested positive 11/20
« Reply #1 on: December 23, 2006, 04:23:08 PM »
  But that denial is a tricky thing to overcome. What I have learned is that you have to advocate for yourself and fight to better your health. Had I not fought for earlier appts. I would be two weeks behind. The anxiety because of what this virus is doing to me without treatment is painful. I hope so much will be resolved when I start my meds. I have a lot of hope.


Hello Rob,

Welcome to the forums, and thanks for sharing your story. Sorry you have had such a difficult time, but I do believe that when you get started on medication, things will improve for you.

Rob, I have been living with this virus since 1985. I always thought that when it was time to start on medication, that I would be ready and willing to do that. The reason I quoted you above, was because of the "denial" that you had mentioned. I think just about everyone of us , has gone through some form of denial, in living with HIV. I had mentioned that in another thread recently. There were several times throughout these past 21 years, where denial hits  pretty damn hard. I certainly know that I did for me.That denial,caused me to loose 30 pounds over a years time,( back in 2003)bacterial  pneumonia, severe case of esophageal thrush, shingles and a couple of other issues.
My original appointment for seeing the HIV specialist, was not until the end of November, of 03. It was eventually moved up to mid October. If it hadn't been, I don't know if I would be typing this message to you today !!

The main thing is, it sounds as though you are in good medical hands,  And you are staying on top of things now.

I believe you stated that you will begin Sustiva/ Truvada on the 26th. Make sure to read up on these medications, and to understand them fully. you will need to be compliant with taking the doses. You can find out about these medications in the "Drug Section" of the site...

When I look back, at how sick and wasted I was  in 2003, I can only tell you, that when I started on meds, I started feeling better and stronger almost immediately. Appetite improved 100%. The weight also came back on.

I know this all so new to you right now, and that your emotions, and thoughts, are going every which way, but things will eventually settle down somewhatand will get better once the meds are started.Allow time for yourself, to help sort things out. I suggests that you get yourself a journal.If you have questions or concerns, make sure to write those questions down. If you have questions, don't hesitate to ask away, someone will always be here to help you sort things out.

Take care Rob / stay in touch with us, post when ever you feel the need--------


 Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,706
Re: tested positive 11/20
« Reply #2 on: December 23, 2006, 04:59:50 PM »
Welcome, Rob.

It's good that you have found us and that you took the time to talk things out a bit.

Getting used to having HIV as a part of your life takes time. Gradually you will learn everything you need to know. Most important is for you to find a doctor whom you can work with in partnership to keep you healthy. From what you have reported it seems as if you have the beginnings of a good team for you to work with.

Depending on where you are geographically, if you can find an AIDS service organization in your area that offers individual and/or group counseling I think that would be helpful as well.

You're always welcome to ask questions here or to discuss anything that's on your mind. There are a lot of people with experience here whom I think you'll find generous in their responses.

This is all very new to you. You're not going to fall through a black hole. So keep breathing and things will fall into place.

Cheers,
Andy Velez

Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #3 on: December 23, 2006, 05:23:21 PM »
I thank you guys for your words of encouragement. Reading about what people have gone through and where they are today gives me hope. Thank you so much for your encouraging thoughts.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Longislander

  • Member
  • Posts: 2,486
Re: tested positive 11/20
« Reply #4 on: December 24, 2006, 02:06:05 AM »
Rob, you've been through a hell of a monht or so, but you made it through like a trooper! You're story was an awesome read. Can't wait til you're more settled and share more of yourself with us!

Unfortunately you had to come to be here, but welcome to Aidsmeds!

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 Eldon

  • Member
  • Posts: 2,664
Re: tested positive 11/20
« Reply #5 on: December 25, 2006, 12:25:58 AM »
Yes, I AM Supporting You!


Hey Rob...

It is unfortunate that you have tested positive for HIV. The BEST thing right now, is for you to take care of you and to get it all worked out. I do look forward to hearing more from you as well.

In my own way, I wish to extend to you a WARM WELCOME here at the AM forums. Here you will find the encouragement, acceptance, communication, understanding, support, some cries, some laughter, and many of your questions relating to HIV/AIDS answered.

Truly, it is a diffcult health situation to accept. However, it is strongly recommended that you Deal rather than Dwell on what has occurred. This will help tremendously to cope with what has occurred with your health.

The Handshake Of Reassurance

We have a great group of Real People who will listen as well as answer you. We are here to Encourage, Learn, and HELP one another as we all walk on our journey in this life.

With the consideration of implementing a Positive Mental Attitude, it will also assist you on your journey in this life as well as having a Positive Impact on your immune system and your overall health.

In fact, through your Positive Mental Attitude, it will HELP you to push forward through ALL of the obstacles on your path that you are now walking on.

Talking and sharing our experiences with other people helps us see that we are not the only ones with problems. Feel free to come and vent with whatever is on your mind from time-to-time and to interact with the other members.

Often the act of writing and the ability to “SEE” your feelings leads to therapeutic insights and solutions..

In the interim, you may want to start taking a multi-vitamin, and some Omega 3, because it is all up to YOU where YOU want to be.

Exercise at least three times per week for a minimum of 30 minutes per day, as this will do you good to help keep that unnecessary stress away.

"Don't You Dare Give Up, Don't You Dare Give In... Because It Is ALL Within YOU To WIN!"

Offline Robert

  • Member
  • Posts: 2,644
Re: tested positive 11/20
« Reply #6 on: December 28, 2006, 08:45:10 PM »
wow rob...

my name is rob too (well, my brothers call me that.  My sisters-in-law call be robby.  My Mother called me Robin.  Dad called me Rob....  I prefer Robert...sounds like a poem, doesn't it.)

Anyway I think we were separated at birth.  I mean your story with Kaiser is IDENTIACAL TO MINE!!!.

I was living in the BAy Area (Fremont, across the bay and about 40 miles from SF.)  In early 2003 I was starting to feel tired and run down.  I checked with my Dr at Kaiser and just sort of got the run-around.  I saw her again that spring and again in June and the usual  <shurg> and take some vitamins.  In August I went rafting down the Rogue River in Oregon with my brothers and they started asking me what was wrong.  They could see it too.  I didn't have an answer for them.

Now it's Oct 2 and I saw my Dr again at Kaiser.  She sent me to radiology to get some x-rays.  I couldn't even walk up there.  I had to get a volunteer (a gray-haired grandmotherly type) to push me in a wheelchair.  By the time I got back down to my Dr's office, I guess the radiologist had already talked to her because the Dr immediatley threw me on a gurney, tied me down and wheeled me off the the emergency room.  That was the last I ever saw of my Dr.

While I was in the emergency room, a young, good-looking guy had my x-rays in his hands, looked at me and asked if I was gay or did drugs.  I asked him why, and his exact words, "Because you've AIDS, fella!".  I made 2 phone calls.  ONe to my MIchael, my partner, and one to my brother.  I left messages at both places.  That is the last thing I remember.  I woke up 11 days later in the Intensive Care unit, with tubes down my throat and IV's in my arms.  Michael, my twin and his wife and my best friend were standing around the bed looking down at me.  It was weird.  I couldn't talk because of the tube but I did some blinking.  It seems I had PCP, had had respiratory failure twice and my last rites read to me. 

Sometime later I met my new DR.  She is an ID doc (and she is still me my ID doc as well as my personal care physician.  The old Dr. is history).  During my recovery I also went thorough the same slew of Doctors and tests you had; the MRI's. the spinal taps, brain scans, body scans, pharmacists, opthomologists testing for every possible OI.  Then came the   nutritionists, physical therapists (I had to learn to walk again...jesus..that was spooky), counselors and RN's. I spent a total of 5 weeks in the hospital (admitted, released, re-admitted and released again with home nursing care.) 

At the time I had 18 t-cells (6%) and 500,000+ VL. 

My initail HAART therapy was Kaletra and Combivir and it made me psycho.  Literally, I was losing my mind.  I had dreams of crawling across my leaving room floor, then falling over the edge to the cliffs below.  Star troopers would hover over me, keeping everyone out of the room.  There was a big granite cube (ala the Borg from Star Trek) on my sofa and I so wished for it to go away but was afraid that when it did, that meant I was dead.  I freaked out at the TV remote because I didn't know how it worked.  The telephone also freaked me out.  I didn't know how to answer it.  LIke I said the first set of HAART was an abject failure.

My ID doc finally changed my drugs to my current regimine of Reyetaz, Norvir and Truvada.  I became undetectable in 3 months and right now, after 3 years, I'm sitting at 609 t-cells (35%).

Not surprisingly, I'm on disabilty after all that.  It's been 3 years. Michael and I have since moved out of the Bay Area and are living in Red Bluff, CA. about 4 hours N. of SF.  We live on our farm and I love it.  I stay busy with lots of work and exercise outside. 

And I love Kaiser.  Like I said, that 1st Dr is history.  My ID doc is now my PCP and we have a great rapport.  I see her every 3 months and now that Kaiser has upgraded and secured their email we talk fairly frequently.  1 year ago I was extremely tired and aenemic and sent her an email.  She saw me right away, and got me on some procrit.  Unlike that 1st Dr. my current Dr always listens to me and always does something about it.  Still have some anemia problems and we're trying to fix it.  So make sure you stay with your ID doc.  Don't let them send you back to the other one.   

So that's my story.  I just read yours for the 1st time.  I was reading in the new forum about Others Helping those who help those with HIV and I saw Scott's thread.  Then I read your response ("you MORON") and cracked up so I thought I would read your other posts and get to know you a little better.  That's when I realized we had a lot more in common than just HIV, depression, and a sense of humor.  We both went through the same system.

Welcome to AM.

robert
..........

Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #7 on: December 28, 2006, 10:00:14 PM »
Hey Robert,

This is Rob, your story gives me hope that I may someday soon start my meds and be on the road to recovery. Kaiser has a very good ID program for HIV and AIDS. It was the first time in my history with them (10 years) that I feel I am not being ignored. They also did a good job with my brother-in law who fought lymphoma this past year, although we had to advocate for him a lot more to move up his appointments. They have been great, always there when I drop by with a question. I call them often and they really seem to care. If they don"t they are really good bullshitters.

You went through so much, yet I would have been there too If I had not been tested. You are really a fighter, a champ...Did you get any weird skin symptoms like flaky skin on the face, red cheeks, and weird itchy rashes before you were diagnosed? I have an eye condition that has me seeing floaters. They never told me what it was, but I think it is related to HIV. I think that was my earliest symptom in 98. Funny enough this really cute doctor treated me in San Francisco when I had an episode while visiting Scott at Hastings.

Right now my biggest concern is that I am wasting away, just lost 3 more pounds. I had bad liver labs on tuesday so I have to wait till thursday to get new labs back. I need to start these meds, side effects or not.

So that is why you have a cow as your picture, you live in the country. I guess you are enjoying the peaceful life. I enjoyed your story Robert. And yes my family also called me all those names. They also call me Roberto. Maybe we sort of live in a parallel universe.

roberto

diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Robert

  • Member
  • Posts: 2,644
Re: tested positive 11/20
« Reply #8 on: December 29, 2006, 01:55:01 AM »
Hi Rob...

Well, other than fatigue and general weakness, I'm not sure what my other symptoms were prior to my diagnosis.  My brothers didn't think I looked so hot so there must have been something, I just can't remember. Maybe I was red, and blotchy, I don't know. But I do know I was red and blotchy when I got out of the hospital. And I did have the floaters in the eye before  PCP and still do. Also I had tinnitus, the ringing in the ear. In fact that was one of my first symptoms.  You see, like you, I had my notions I was positive and chose to ignore it.  I last tested negative in 1999.  I got sick in 2003.  So sometime in those 4 years I got the big disease.  I also don't remember seroconversion. 

I did not experience the wasting prior to my hospitalization.  But that was another one of my AIDS symptoms.  While I was hospitalized and when I went home the 1st time I lost about 25% of my weight (from 145 to 110).  I've put it all back on now.  And now I have to watch my weight.  I exercise dutifully during the summer but for some reason I've stopped during the winter months.  Not good.  I went to see my Dr last Tuesday and they weighed me.  161 lbs.  I have NEVER weighed that much in my life.  It's depressing.  I'm a cookie monster. I love cookies.  Home-baked cookies.  I bake about 3 or 4 batches/week.  Michael doesn't touch 'em.  Just me.  So now I'm fat. First time in my life. Not good. In fact, it's down right depression.  Time to get back on my rowing machine.  I bring this up because as soon as you're off the motrim (?) for the PCP and your on meds and your numbers improve, then your weight will go back up.

My liver is OK.  That was one of the things the specialists looked at along with all the other stuff.  I can't remember if there were problems or not.  I do have high cholesterol/lipids (who doesn't) but I have a constant diet of oatmeal with flax every morning for breakfast.  Yesterday I felt like puking as I was eating it though.  Time to give it a rest, I think.

Depression was not a problem prior to diagnosis.  Now it is.  I've always wondered if it was the virus or the pills.  Just the other day our friend COWANDAL posted an article about the possible BIOLOGICAL LINK BETWEEN HIV and DEPRESSION.  I'm on prozac now and it does nothing for my sex life.   Stay away from that.  At my appointment the other day, my Dr took me off the prozac and now we're going to try something called EFFEXOR.  Know anything about it?  I think I should just give them all up and see how I do.  If I exercise and eat good, healthy foods and stay busy, I should be able to keep depression at bay.  What do you think?

So are you going to start meds soon?  I know you mentioned Sustiva and Atripla.  Ask your Dr what she thinks of my regimen...the Reyataz, Norvir and Truvada.

adios amigo....robert

ps. how's your memory?  mine sucks.
 
..........

Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #9 on: December 29, 2006, 09:53:38 AM »
Hey Robi,

Well, I guess denial is not just a river in Egypt but, sometimes we are thrown into the Delaware, and the water is fucking cold.

Do you do anything for the floaters? I only get treatment when my "eyeritis" flares up to prevent them. I think that once you get floaters they linger like unflushable floaters. You know what, I do get ringing but not that often.

Yep, I got AIDS the good old fashioned way, but what put me at risk is a string of complexities, including religion, and ignorance.

Glad you got your weight back, unless you are like 5 foot one, 165 is not that fat. I am 511 and 175 was a great weight when I was fit. Now I am 143.

You know, it is great that you like cookies, because I don't think there is any food right now that I like that much. So enjoy

I know what you mean about the oatmeal and the flax seed. I tried flax seed every morning due to the digestive problems (before diagnosis) and got sick of it to the point of gagging. I eat oatmeal every morning becaus my primary doctor swears it will help me with my diarrhea (not) , but have given myself an oatmeal holiday. It is horrible having to eat something you have grown to hate.

I do have a tendency to be depressed, but never to the point where I want to off myself. My ex has tried every anti-depressant available. He went nuts on several of them. My therapist suggested I try them and I told him no way, I prefer to be naturally macadamian. So in answer to your question I think that if you are not going to throw yourself under the harvester, then yeah try gettin' off of them. I think that my depression is part of my personality, and I tend to not want to snap out of it. I can't be Mr. Cheerful all of the time.

What is interesting is that when I am teaching those kids, I am very happy and a different person. I start putting on my happy face as soon as I get into the car to get to work. It is a real transformation. I thank my lucky stars that I have a job that helps me take my mind off the AIDS thing. The kids really cheer me up. There is no other time when the world seems so full of promise I think. That is why it breaks my heart when children are not allowed to have these years of innocence, because of abuse and neglect. I love having a meaningful job that feeds me emotionally.


Take Care Robert. I enjoy your entries.

rob








« Last Edit: December 29, 2006, 10:06:54 AM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Robert

  • Member
  • Posts: 2,644
Re: tested positive 11/20
« Reply #10 on: December 30, 2006, 02:35:35 AM »
Hi rob.

So when are you going to start your pills?  Sustiva and Atripla, right?  I think your continued weight loss will reverse itself once you start getting your immune system back up to snuff by eliminating the viral load and adding some t-cells to the mix.  You've been diagnosed with PCP and you're taking mepron.  That's all well and good but what's stopping them from starting the HAART?  If anything is going to help your weight loss, it's a healthy immune system. Now this might sound nuts but HAART also contributes to diarrhea.  But would you believe me if it was a different kind of diarrhea, the kind that doesn't cause weight loss?  I didn't think so.  But I still think you should start your pills soon.  You have nothing to lose but a little more weight.   

Bad news about the floaters.  Can't do anything about them.  The floaters and then tinnitus sort of alternate their phases.  Like right now, for instance.  Most of the day, I've had the ringing in my ear.  My left eye (the floater) is fine.  When the ringing goes away I just know the floater will reappear.

Whatever you do, it's important to take good care of yourself.  You certainly can't afford to lose time from work.  You need that job for your own mental health.  Like you said, you love your job so don't do anything to put it in jeopardy.  I wish I knew what else to say about the weight loss.  Oatmeal. flax, Imodium, Mepron, HAART, ..whatever it takes, just do it and get better.

robert

(who is a little taller than five one...more like five eight but still growing fatter every day.)

..........

Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #11 on: December 30, 2006, 10:05:36 AM »
Hey robbi boy,

What is keeping me from starting meds, is very elevated ALT liver levels. The latest is that an ultra sound of the liver performed this week was normal. Yesterday, they gave me those results and they drew blood to check on the liver. I am going to go in on Thursday, and hopefully they will decide to put me on meds to with close monitoring of the liver situation.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline rick21007

  • Member
  • Posts: 286
Re: tested positive 11/20
« Reply #12 on: December 30, 2006, 11:16:21 AM »
Hi Rob----I had hep-B (acute) earlier this year (before I was diagnosed with hiv  but likely contracted it from the same partner)   My naturopathic physican put me on an herbal remedy for liver support, but only after my liver enzymes went down to normal.  ( at the advice of my IM doc) The same time I was tested for hiv I was tested for the hep-b antigen and turns out I did not go chronic and my liver panel is normal.       Good luck,   Rick

Offline NECMHGUY

  • Member
  • Posts: 9
Re: tested positive 11/20
« Reply #13 on: January 01, 2007, 07:03:20 PM »
Just thought I would share my story as well because I see so many similarities in what everyone else has had to say.

Not sure when I contracted HIV, but I "think" it must have been in October 1999.  That was really the only opportunity I can think of.  Ended up really sick about a month later...flu-like symptoms and the worst headache I have ever had.  Ended up going to the ER and being admitted for five days due to dehydration.  No tests were ever run and nobody ever brought up the HIV question...even me.

Stayed pretty healthy for the next six years.  Only took two sick days from work during that time.  One year ago today, on January 1, 2006, I started getting a chest cold.  After a month of trying to fight it with over the counter meds, I went to see my primary physician.  He said it was just a bad cold, sent me for x-rays and a prescription.  He called me back and said I had pneumonia and to keep taking the prescription.

I continued to work ungodly hours, likely I normally do.  Even travelled while I was having noticeable trouble breathing.  Went to Urgent Care twice, ER once and a Pulmonary doctor during the first two weeks of February.  Was told to rest and keep taking meds.  Everything came to a head at the end of February, when I literally could not breathe without pushing down on the top of my chest.  Called my family to come take me to the ER.

I was there overnight.  The doctor, speaking to me in private first thing that next morning, told me that I had AIDS.  I had PGP pneumonia and thrush on my tongue...apparently dead giveaways.  I can't even remember what they said my viral load was, but my CD4 count was 4.  My pneumonia worsened and I ended up on a ventilator for three days, which I don't remember.  All my family came to town.  Luckily I pulled out of it and was able to go home just three weeks later.  Went back to work two weeks after that.

This has been especially hard because I have ZERO involvement in the gay community.  I have no gay friends and know very little about the community.  This site has both helped me and scared me over the past year.

My Infectious Disease doctor is someone that I trust and has been very honest with me from day one in the hospital.  He immediately put me on Sustiva and Combivir.  Also started on Zithromax and Bactrim right away.  Stopped Zithromax after 4 months and now Bactrim is just three times a week instead of every day.

I experience frequent nausea, even a year later.  I have a prescription for Zofran to help, and it always does.  I was only in need of it about 1 or 2 times a week, but now I need it 5 or 6.  My viral load is already undetectable and my CD4 count is climbing...slowly.  I hesitate to mess around with my meds because I know side effects could be much worse.  The current side effects suck enough as it is. 

When I go see my Infectious Disease doctor, he tells me that I am the model patient.  I take all my meds and I am back into the land of the living.  He lets me know that he sees a couple of men like me every single month that come into the hospital in just as bad of shape as me.    I'm glad he feels that way, but I still wish I felt better than I do.  It's hard to shake the feeling that the wolf is knocking at my door with a tumor, or a liver problem, or lipodystophy or PGP again.  Just want to live my normal life, keeping the knowledge that my HIV status remains just with my family (NONE of my friends or co-workers know). 

My family still has a huge issue with the mis-diagnosis those half dozen times I visited my primary doctor, ERs and Urgent Care facilities.  I probably knew what was going on deep down, but shouldn't health professionals take this disease more seriously too?

Thanks for letting us "satellite gays" feel welcome on this site.

Offline J.R.E.

  • Member
  • Posts: 7,162
  • Joined Dec-2003 Living positive, since 1985.
Re: tested positive 11/20
« Reply #14 on: January 01, 2007, 08:47:12 PM »
Just thought I would share my story as well because I see so many similarities in what everyone else has had to say...


Thanks for letting us "satellite gays" feel welcome on this site.


Hello NECMHGUY,


Thanks for sharing your story, and welcome to the forums.



Happy New year------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #15 on: February 05, 2007, 07:25:12 AM »
Hey guys, the road ha been bumpy but I ma hanging in there. Just wanted to let you guys know that I finally startert meds (have been on them for a mont). I am doing well except for the diarrhea, and some minor cns stuff. Anyway hope this gives all of you newbies hope and encouragement.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline hardyve

  • member
  • Posts: 2
Re: tested positive 11/20
« Reply #16 on: February 05, 2007, 07:35:15 AM »
i have been test poz for 4yrs now. but no treatment still ok health wise

Offline hardyve

  • member
  • Posts: 2
Re: tested positive 11/20
« Reply #17 on: February 05, 2007, 07:43:08 AM »
 ???[
i have been test poz for 4yrs now. but no treatment still ok health wise.  i have been living on vegetable and fruits ::) i really need advise on what to do next
 ;D
[/quote]

Offline mjmel

  • Member
  • Posts: 2,069
Re: tested positive 11/20
« Reply #18 on: February 05, 2007, 07:54:40 AM »
I just tested positive a few weeks ago (11/20/06)....

...I am sorry my story is so long, but it helps me by sharing my experience. Thank you for having such a great site, full of hope, love, and compassion.

rob
It is postings like yours that helps newcomers relate to this site and understand they are not alone.  Calcium (Calcium Carbonate, from Oyster Shell) seems to help  the diarrhea.
« Last Edit: February 05, 2007, 07:58:19 AM by mjmel »

Offline escapevelocity

  • Member
  • Posts: 10
  • snow.
Re: tested positive 11/20
« Reply #19 on: February 05, 2007, 03:57:35 PM »
Hi Rob,

I'm new here, too, though I've been poz since 1997.  Your story is incredible, and horrifying.  You've been through the ringer, my friend.  I hope that after that explosion of bad news and traumatic experiences, things get under control and you're able to take a deep breath and get acclimated to this new life.

I want to congratulate you for standing up to your doctor and demanding that you get the treatment you need, especially in the face of such an overwhelming experience.  Bravo for standing up for yourself!  A lot of people would have buckled under those circumstances.

I was really sorry to hear about your partner disclosing to your family.  Your disclosure is your business.

Welcome to the forums.  My best to you.

John

Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #20 on: February 06, 2007, 10:47:21 PM »
Hey John,

Thanks for reading my story. I know it was a mouthful. I am doing ok on the sustiva truvada combo. I will go in for my second labs on the 8th and will get the results on the 15th. I have learned and grown so much in the past three months. It has changed me, and much for the better.

MJMel

Thanks for the advice on the shits. I still have them. But I have gained three pounds which is encouraging, even if I am still very much underweight. I am going to look into your remedy.

You guys are great. This is what this website is all about.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline rick21007

  • Member
  • Posts: 286
Re: tested positive 11/20
« Reply #21 on: February 07, 2007, 11:08:52 PM »

My family still has a huge issue with the mis-diagnosis those half dozen times I visited my primary doctor, ERs and Urgent Care facilities.  I probably knew what was going on deep down, but shouldn't health professionals take this disease more seriously too?
[/quote]

Hey Rob and Gang----Rob, have been following your story with a lot of interest because you were diagnosed just a few weeks before I was.  You are one of the heroes on the forums watching how you have handled yourself and dealt with the issues of being hiv early on.  I salute you, my friend!  What a trrooper and an inspiration you are!

I am not on meds yet myself.  I have a 2nd visit with my hiv specialist on 2/12 and will find out the results of my latest labs.  She indicated on my first visit that she did not think I would be on meds in the foreseeable future but we shall see how the labs are looking. Meanwhile after being sick for most of 2006 it is good to feel like my health is back.

NECMHGUY----I was diagnosed with hepB in April of 2006 in the emergency room of St. Charles Hospital in Bend, OR---supposed to be one of the better hospitals in the state.  I wished in retrospect I would have had the presence of mind to _request_ an hiv test then but I was so damn sick and I was not totally confortable in terms of confidentiality as I have a relationship with that ER professionally.  Anyway youda thunk the ER doc would have ordered an hiv test when my hepb test came back positive.  Follow up in a week with who was recommended to me as one of the top internal medicine docs in Central Oregon.  I told him I was gay in my initial visit.  You think he woulda recommended an hiv test?  Six months later:  I take the initiative, contact my doc and request a follow up hep-b antigen test to see if I had become chronic or not plus follow up liver panel to check those numbers out.  I requested an hiv test at the same time---having had 101-102 fevers every night for over a month plus night sweats, I kinda figured something could be up!  Bingo!!  Office nurse calls in a week to tell me I am negative for hepatitis _but_ I have hiv, oh by the way!  "And hey, you have a nice day!"    Yeah!  What is purported to be good health care, doesn't quite live up to the advertising when it comes to diagnosing or treating hiv.  I could write another several paragraphs just about going to the labs to have the CD4 and VL labs drawn!!  It has been interesting.... I finally did get a physcian I like and have confidence in.  Prior to moving here to the Outback she taught hiv treatment protocols at UC San Francisco.

Hardyve--- hey are you having labs done to track your hiv??  Hopefully you are, and if you are not then get this done.  Do you have a competent, knowledgeable hiv specialist you are working with?   Locating one just as soon as you can is important.  Glad to hear you are in good health---what is your source of protein in terms of your diet BTW?  But don't let your good health lul you into thinking you do not need on-going medical management, please, please, please!  And keep us posted!  This is an excellent place to get good information.  It has sure helped me out a lot.

Take care my friends!   Rick


Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #22 on: February 10, 2007, 08:47:07 PM »
Hey Guys,

I went in for my labs today. I think it is getting easier to the labs. The attendant doesn't ask me if I signed a release for the viral load anymore. I like that I am treated with respect each time. I guess these feelings have more to do with me perhaps. Anyway, I will be getting new results this Thursday. My labs on Thursday will reflect 37 days on truvada and sustiva.
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: tested positive 11/20
« Reply #23 on: February 11, 2007, 01:15:49 PM »
Hey Rob

I am sure your results will look great especially at your rate. Sustive is known for getting geat results quick. Labs can suck sometimes but since u are on meds now I think it is safe to expect better numbers. Good luck and please keep us posted.

AL
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline koi1

  • Member
  • Posts: 713
Re: tested positive 11/20
« Reply #24 on: February 11, 2007, 07:09:02 PM »
Thanks my Iva,

You are always rootin' for me along with the others on this website. You are going to be fine too. We are going to celebrate our HIV b-days together some day.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

 


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