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Author Topic: So Many Questions  (Read 3069 times)

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Offline Rique

  • Member
  • Posts: 4
So Many Questions
« on: November 23, 2012, 05:37:14 AM »
Hello everybody. I'm "Rique." I'm a 34 year old Hispanic male diagnosed with HIV back in September, 2000.

I've never considered myself unintelligent, naive, or absent minded. I know now that I may not have been those things, but I most definitely have been negligent; I always knew the facts, but somehow, never seriously considered where my negligence would lead me.

Upon diagnosis, I had a high viral load and roughly 700+ CD4 cells. I have been prescribed Viread, Norvir, Rayataz, Atripla, Viracept, and Combivir during the 12 years I have been living with HIV. I was never any good at taking my meds and would quit them when a nasty side effect came about. Time and time again, I would test with a CD4 count of around 500-600. I began to think taking meds wasn't necessary or something I only do for a few months at a time then quit, since that was what I had been doing and never developed resistance.

Back in early 2011, I went back to my doctor for tests after having been free from HIV meds, as well as any follow-ups for a couple of years. I actually expected to get bad news and was stunned when I was told my CD4s were around 500+ and my viral load not so high but not low either. From then on, I just got cocky.

I didn't see a doctor or take a single pill for a year and a half.

Relatives began to inquire about my numbers, since I hadn't mentioned my current state of health forever. I'd tell them the results I got back in early 2011. Still, they urged me to go get checked out by a doctor, just to get things updated. I'd always promise to get on it, but kept putting it off. I must have put it off at least 5 times.

Earlier this year, I began to notice my once full cheeks begin to sink in. One of the most unbelievable things I'd convince myself of was that I had probably accidentally etched-out that slight indentation on both cheeks...due to having applied way too much pressure while shaving. I have injured myself before and have even etched a fine line or two due to my tendency to go razor-happy, but this was clearly something unrelated. Needless to say, I was knee-deep in denial.

29 October, 2012, the day I finally return to AHF. I can't tell you exactly what propelled me to quit procrastinating, but I suspect my body was trying to tell me it was not well; I had been unusually somber and pensive the weeks prior, thinking of death a lot, and becoming more and more concerned about my sunken appearance. I even took the day off from work to attend the next available appointment, something I wouldn't have bothered doing before. I got my labs done, got my ADAP and other returning client paperwork sorted out, and was on my way. I was so glad to be out of that office, as I had gone through that re-admittance process at least 3 or 4 times before, and hated all the paperwork. The staff have always been lovely and I've never had complaints, but the paperwork and other things were excuses I'd use to stay away.

19 November, 2012, I was running late, as usual, and worried I'd have to reschedule. It was my follow-up appointment. I had class that evening and, being the chronic procrastinator that I am, had some last minute homework I needed done badly. I briefly considered rescheduling, and even hoped I'd be turned away for being too late. I arrived and was told to have a seat while they checked to see if my doctor would see me. I have been to that place many times and there is always a wait of at least 20-30 minutes in my experience. I hadn't even set my butt down on the chair ten seconds, when a nurse came out and called my name. I was overjoyed because I thought the quicker, the better, and then I can get my homework done.

I thought it unusual that my doctor was there the moment they began taking my vital signs. He glanced at the blood pressure monitor with a look of concern. I tried smiling at him but he only came back with a half smirk. Something was up.

He took me into the examination room, and the next few minutes were, well, surreal.

My CD4 count had plummeted to 143, my viral load to well over 225,000, and I had pneumonia. I took the news like I've always taken bad news...silence. As he went on and explained how serious it all was, I began to get clammy, see everything turning white, and sweating profusely. I told him I thought I was going to pass out when the pain in my stomach began to make me feel dizzy. He laid me down and told me to relax, that I was having a physical reaction typical of high emotion, usually after hearing very bad news. I experienced that 3 times. I couldn't believe my CD4 count was so low and my viral load so astronomically high. And pneumonia! All the while I assumed I just had a minor cold, even as my lungs crackled with every deep breath. Denial. Now I know, it is a killer.

Maybe I'm in denial as we speak, because I don't want to die. Not yet, and believe I can overcome this. I'm so disillusioned with myself at this point, I don't know if it's denial or optimism. Surely denial bore the face of optimism before and had carried me throughout those 12 years living with HIV. And here I am now, living with AIDS.

I apologize for the wordiness. I initially meant to simply ask questions but ended up typing all of this. I suppose I find it therapeutic to recount the HIV-related events of the past 12 years, considering they were non-events, until now. I see the importance of regular follow-ups and I think, "duh!" Just an hour or so of my time once every three months to reassure I'm OK or in need of medication when I wasn't taking any. It all seems like such a no-brainer and I'm not an idiot, yet, I totally feel like one now. How could I do this to myself? I don't think I'll ever forgive myself for this.

I have been prescribed Bactrim for three weeks. Started it last Monday. I have this overwhelming desire to begin taking HIV meds, since my numbers are just horrible and I feel so vulnerable, and could catch just about anything at this point. But my doctor said he'd put me on HIV meds until after I finish the Bactrim. I trust him, as he truly appears to care, but I also must admit that a part of me feels it's a lot worse than they made it seem and things can go from bad to deadly in no time. But I'm sure that's me being pessimistic...for a change.

My questions. Any response would be so appreciated:

1.) I feel like the HIV is quickly doing away with the rest of my measly 143 CD4 count, and that was my count on or around 29 October. Will waiting another 2 weeks cause them to lower significantly, considering my very high viral load?

2.) I feel so vulnerable and I've read all about the many exotic opportunistic infections I am susceptible to right now, and to be frank, I'm scared shitless, to put it kindly. I work with kids. Lots and lots of kids. Hordes of kids, and while most appear to be clean and mind their manners, there are always those that have neon green snot hanging from their noses and get rubbed away with their sleeves. I can't even count the number of times a child has openly sneezed right in my face, spraying me with God knows what. It's a spontaneous event, too. No warning. ACHOOO!!!! That ACHOOO!!! can kill me. Am I overreacting?

3.) How long does Bactrim typically take to kick in? I haven't formally been diagnosed with pneumonia but my doctor said he's pretty sure I have it based on the noises my lungs produced over the stethoscope. It has almost been a week and I've been taking the 2 Bactrim prescribed every 8 hours religiously and I still produce that awful crackling sound; however, I don't produce colored mucus. Occasionally, it is streaked with blood but I was told that's normal by someone who's had pneumonia before and I know at least one of those times I ruptured a blood vessel in my nose. But I can't say the blood came from the same source the next few times my tissue was stained with red. Is this a sign it's advancing? Hard to believe it is normal.

4.) I know nobody out there has anyway of really knowing, but based on your experience, those of you who've been through it, do I stand a good chance of surviving this? I'm just so scared.

Thank you for your time.

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: So Many Questions
« Reply #1 on: November 23, 2012, 07:21:47 AM »
Hi Rique,

I can't comment from personal experience about the pneumonia or bactrim but just wanted to say take a deep breath mate. Follow your doctor's advice regarding Bactrim and the ARVs- monitor your health and you'll be all right. Stressing and ignoring the virus only gets you so far, as you've seen...right?

So, take those little steps; your numbers will soon start climbing and you'll be ok.


PS- And please quit googling for exotic OI's.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline leatherman

  • Member
  • Posts: 7,286
  • Google and HIV meds are Your Friends
Re: So Many Questions
« Reply #2 on: November 23, 2012, 11:59:52 AM »
1.) Will waiting another 2 weeks cause them to lower significantly, considering my very high viral load?

2.) Am I overreacting?

3.) How long does Bactrim typically take to kick in?

4.) do I stand a good chance of surviving this? I'm just so scared.
quite a story there Rique. It just goes to show it's never good to ignore a health problem that you've been diagnosed with. Untreated, it'll eventually come back to bite you in the butt.

#4) plenty of us have been as sick as you, or sicker believe it or not, and lived to tell the tale. Things are very precarious for you right now; but your chance of survival - by staying in proper treatment  - is good.

#3) get used to the Bactrim for a while. You'll be taking it until your cd4 counts stay over 200

#2) I lived like a hermit for yrs after the PCP, regular pneumonia and low counts. You are at risk right now and need to take all the precautions you can. Wash your hands frequently, use disinfectant/antibacterial cleansers, etc

#1) your doctor is probably waiting to start HIV meds until a genotype test is returned to tell him which meds will work, and which ones your virus has developed resistance too by your start-and-stop drug taking through the years.

While in the past I myself stopped meds because of quality of life issues (I was taking early meds in the early 90s), I do wish to give you a major word of warning. My start-and-stop drug taking often left me waiting for the next option or without any options. I have had to take some really strong combos of meds because I let the "good" combos get wasted by letting resistance/mutation happen. Nowadays, new HIV meds aren't coming out every other month. if you let this next regimen fall by the wayside by not staying adherent and not staying it care, you may find yourself in a very serious situation just down the line. How sad it would be to be in a hospital dying with AIDS because none of the meds on the market would work for you anymore.

Now a word of support. If or when you experience side effects with this next batch of medications, don't just stop your meds. Remember there will probably be some adjustment as your body adjusts to the chemicals of the meds, and as it adjusts to the lowering of the HIV virus in your blood. Why you might even get a little sicker as your immune system recovers and begins to fight something in you that it's not fighting right now. If that happens instead of stopping the meds - Talk to your doctor! There may be something else to take temporarily to help, or a dosage change, or even a med change. Of course, as spacebar pointed out, you've seen that just walking away from the meds when you didn't like the side effect sure didn't help but has gotten you to this point of being in a very risky position. You might even need to seek counseling to help you change your habits and stay adherent, but it would be well worth the time and effort.

I hope you get better soon and hope you learn to actually treat your HIV rather than continuing to ignore it. ;)
leatherman (aka mIkIE)

All the stars are flashing high above the sea
and the party is on fire around you and me
We're gonna burn this disco down before the morning comes
- Pet Shop Boys

chart from 1992-2015

Offline Fisher

  • Member
  • Posts: 290
Re: So Many Questions
« Reply #3 on: November 23, 2012, 12:19:44 PM »

Like you, in my experience, coming from what I considered to be a very safe place to a very vulneable place . . . I too was scared shitless.  I think almost everyone becomes scared shitless when a signifcant change occurs. But it is also my experience that "time heals," and in a few weeks you will be more "on the level" emotionally and psychologically to adjust to your current cumstances.  Give yourself some time.

There are many people here with a lots of experience and compassion.  My guess is, that it would be very wise to hear their words and listen to their advice.


- fisher
06/15 CD 365 %24 VL<20
01/15 CD 468 %24 VL<20
09/14 CD 385 %22 VL<20
07/14 CD 391 %20 VLUD
04/14 CD 486 %23 VL<20
11/13 CD 351 %21  VL<20
10/13 CD 390 %16  VL<20
06/13 CD 315 %19  VL 22
02/13 CD 396 %14  VL<20
12/12 CD 392 %13  VL320
11/12 CD 428 %13  VL1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 Western Blot
05/83 04/98 - Mon - Pa

Offline Jmarksto

  • Member
  • Posts: 655
Re: So Many Questions
« Reply #4 on: November 23, 2012, 01:28:10 PM »
Rique;  First, welcome to the forums and I am sorry that you need to be here and in such a state.  I also want to thank you for posting. Your story is an "inspiration" to me and I am sure it will be for others to remain adherent to our meds and labs.

It sounds like you are getting the care you need to get better and I wish you well,

03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45% VL 25
02/25/14 CD4   792/37% VL UD
07/09/14 CD4 1004/39% VL UD
11/03/14 CD4   711/34% VL UD
03/13/15 CD4   833/36% VL UD
04/??/15 Truvada & Tivicay
06/01/15 CD4 1100/50% VL UD
10/16/15 CD4   826/43% VL UD

Offline LoboDog

  • Member
  • Posts: 82
Re: So Many Questions
« Reply #5 on: November 23, 2012, 08:50:22 PM »
Hey Bud...

I wish I had known you before you started getting lackadaisical. I would have told you my horror story.

When I was diagnosed, I had 46 T-Cell and a viral load of 160k. It took me 3 months to go to undetectable and a year and a half for my T-Cells to get above 200...

A good friend of mine in the late 90's lived for almost a year with less than 10 t-cells (It was a really crappy year though).

Bottom line, you will make it through... But...

You absolutely need to stick with the pills. Once the disease has gotten this far, it will take you right back here if you fall off the pill wagon.

Second thing... Look at yourself in the mirror, get all the worry out and then move on. Stress is a killer to your immune system.

Third thing... You have AIDS... It's not a bad thing to go on temporary disability until your numbers go back up. Consider it if its an option. I don't recommend permanent disability as most of my friends that have done that route fall into a trap and become bitter.

Fourth thing... Give yourself a hug from me. You will get through this.


Offline tednlou2

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  • Posts: 5,731
Re: So Many Questions
« Reply #6 on: November 24, 2012, 02:58:28 AM »

Welcome to the forums.  I am glad to hear you're back into monitoring your health.  I wish you all the best, as you begin to get back on the road to health.

A very bad case of pneumonia is nothing to play around with, whether it be bacterial or PCP.  I ignored my status for several years, and ended up critically ill with bacterial pneumonia.  They said I would have died, if I hadn't come in then.  I didn't even feel all that bad.  That is the scary part about it.  I just felt like I had a very mild flu.  I began to have the worst back and side pain.  I thought I had just pulled some muscles, while sneezing.  I have both an MD and a chiropractor in the family.  The MD listened to my lungs.  They sounded clear--not crackling.  However, the chiropractor noticed my left rib cage was sticking out.  I never had the crackling.  The docs said the pneumonia was so compacted at the bottom of my lung, that it sounded normal.  I felt I just had the flu, until the pain got really severe and I was gasping for air and turning blue. 

So, pay attention to your body.  Your doc didn't prescribe antibiotics for the pneumonia?  I don't believe Bactrim will work for bacterial pneumonia.  I am concerned you could have bacterial pneumonia and you're not being treated for that. 

Offline J.R.E.

  • Member
  • Posts: 7,540
  • Joined Dec-2003 Living positive, since 1985.
Re: So Many Questions
« Reply #7 on: November 24, 2012, 06:38:26 AM »

 I actually expected to get bad news and was stunned when I was told my CD4s were around 500+ and my viral load not so high but not low either. From then on, I just got cocky.

I didn't see a doctor or take a single pill for a year and a half.

Hello Rique,..

Welcome to the forums !  I can relate a lot to the above statement.  I was diagnosed positive in 1985, and didn't begin treatment until October of 2003.

In 1999, I had a Tell count around 1000, and a viral load, at just about the same. I stopped seeing doctors after that test in 1999, because " I became too cocky"  I've stated that same sentence, here on the forums on several occasions. So,,, I hear ya. We also learn from our mistakes !

By the time I had started treatment in October of 2003, I had 16 tcells and a viral load over 500,000. I was already 18 years into HIV infection at this point.

I went through 12 months of wasting ( loosing about 45 pounds )  Extreme fatigue, esophageal candida, which later was responsible for causing bacterial pneumonia, and a one day hospital stay, and several episodes of having shingles. Oh yes, and the anal warts !

As others have stated, we can avoid many of the OI's if we get proper medical attention, and get started on medication, when we're supposed to.

Bactrim ( at least for me) started working immediately.  I was later changed to dapsone, which worked very well too.

I don't think it should take you that long, once you start on medications, to get your TCELLS back up again.

Once you get to 200 TCELLS and maintain that for a few months, you will be able to drop that medication.

4.) I know nobody out there has anyway of really knowing, but based on your experience, those of you who've been through it, do I stand a good chance of surviving this? I'm just so scared.

Thank you for your time.

 I think you will start seeing some great improvements.  You stand a VERY good chance of surviving this, but from this point on , Listen to your doctor, take all your meds when you're supposed to, and stop getting cocky !

Hang in there---Ray

Current Meds ; Viramune, Epzicom, 20mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 9/24/2017

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 9/18/2017,  Viral load remains <40
CD 4 @358 /  CD4 % @ 13

 65 years young.

Offline Rique

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  • Posts: 4
Re: So Many Questions
« Reply #8 on: November 28, 2012, 04:08:46 PM »
First of all, my sincerest thanks for all the advice and support. It's such a relief to know there's a place I can go to where people can relate. The rest of the world is still in the mindset of "if you catch HIV/AIDS, you're dead meat!"

Things have actually begun to look up. Here's an update:

I had a follow-up on Monday and was told I could reduce my dosage of Bactrim from 6 pills daily to only one a day. My lungs sounded clear, my coughing had disappeared, and I was given the green light to start on HIV therapy. I was prescribed 800mg of Prezista; 100mg of Norvir; and 200-300mg of Truvada. 4 pills, once daily, in all. I took my first dose on Monday night and have taken two doses so far.

Now for the not-so-good news:

Almost immediately after leaving my appointment, I began to have body aches. I tried to ignore it but it got so uncomfortable, I had to leave class early that night. I felt like I was coming down with the flu later on that night and I began coughing again. When I coughed, blood came onto my tissue. This only happened once. I went to sleep and felt much better when I woke up around 3 p.m. on Tuesday. I went to university and climbed 4 flights of stairs to get to my class. When I reached the top, I was extremely out of breath and was sweating profusely. I went to my car and sat inside until my heart rate and my breathing reached a normal rate. That took about 20 minutes. Then I went home.

When I got home, I took my second dose of the HIV meds. I couldn't sleep, so I stayed up on the computer. I began to feel really itchy. I didn't think much of it, until the sun rose and I could see better. I was shirtless, so I glanced at some of the itchy areas, and saw I was developing a rash. The itching would get very intense when I scratched and thousands of pink to reddish points covered my arms, upper back, and chest. The itching soon turned to sharp pricks. Not really all that painful but annoying. I looked up side effects of the HIV meds and, apparently, Prezista carries a warning of possible serious side effects that includes rash, and advises to stop taking the medication immediately and to call your doctor. Great.

Now, the rash seems to have gone from thousands of tiny, red points to larger blotches that are very light red. It actually appears to be going away. It's still there and still produces that prickly sensation but has changed appearance. As far as the way I feel, I feel fine. Just a bit sweaty. I can breath OK.

Guess I gotta go call the doc. *sigh* 

Offline Rique

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  • Posts: 4
Re: So Many Questions
« Reply #9 on: November 29, 2012, 03:47:41 AM »
It's 12:17 a.m.,Thursday, and I'm feeling "meh."

I phoned the doc and was told that some rash is expected and it's my body getting accustomed to the medication. Since it isn't severe, I was instructed to take two 25mg, over-the-counter tablets of Benadryl, and told to stop taking the meds immediately and phone in should the rash spread to my lips.

Basically, I need to tough it out, because those particular meds are worth the trouble. Considering my condition, I think any HIV combo is worth the trouble at this point!

Took my third dose tonight and immediately broke out with the prickly rash, which was twice as bad as before. I also had a headache and  Took Benadryl and it helped smooth-out the tiny, raised bumps. It hurts when I feel a chill!

Nothing alarming, so I've decided to do what a lot of you had recommended...calm down! Hehehe. Haven't slept in almost 48 hrs., so, night all. 

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: So Many Questions
« Reply #10 on: November 29, 2012, 05:54:18 AM »
Rique, I would suspect Bactrim as the cause of your rash rather than Prezista. It would be unusual for a rash to start after only two doses. It usually takes a week or two before a rash shows up.

You should speak to your doctor (again) about that and remind him you're on Bactrim. Rashes are a lot more common with Bactrim rather than Prezista. I don't recall ever hearing of someone getting a rash from Prezista, but I know plenty who had a rash from Bactrim. There are other meds you can take instead (ie Dapsone) and your doctor may want to switch you now rather than taking a "wait and see" attitude.

It could be that adding in the powerful meds in your combo is what finally triggered the reaction from Bactrim. But I really doubt it is the Prezista itself that is causing the rash. Please do speak to your doctor again and remind him you're on Bactrim.

I'm on the same combo as you are - I started in July and it's my first combo. Aside from a little more diarrhea in the first few weeks, it's been pretty much side-effect free for me. It's a well tolerated combo for most people. Make sure you eat something when you take your combo - the Prezista needs some food in your stomach, even if it's just a light snack.

Sorry to hear you've been feeling unwell again - keep in mind that you're recovering from pneumonia and it can take some time before you're back to your old self. Go easy and give yourself time to heal, ok?

Hang in there and let us know what your doctor says about the Bactrim.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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