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Author Topic: HIV Related or All In My Head?  (Read 2062 times)

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Offline tednlou2

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HIV Related or All In My Head?
« on: December 05, 2009, 02:09:20 AM »
Okay, it seems like I've told my story a few times in posts or in personal messages.  So, I hope I don't start sounding like a broken record.  Today was the one-year anniversary that I was rushed to ER with strep-pneumonia at age 32.  I didn't recognize the signs and let it go too long.  I was in the hospital for a week.  Monday, Dec 7th will be one-year anniversary that I was diagnosed.  So many docs have told me I could have gotten the strep-pneumonia if I were negative and that it doesn't necessarily mean anything.

I tracked my infection either back to an incident in 2001 or from my former partner in 1995 who is poz.  I've had this for several years is my point.  Before getting sick with pneumonia, I couldn't tell ya when I was sick before.  Over this year, I haven't been sick--knock on wood.  I'm not on meds yet, because my CD-4 rebounded to over 1,000 after getting better from pneumonia.  In the hospital is was just 171, but I was told to ignore that number.  Mostly, my CD-4 has been around the 800 area this year.  My VL has never been over 24,000 on a test.

Given my "good" numbers, I still worry about untreated HIV.  I have some concerns that I'm wondering if any of you have experienced.  I'm probably just looking for things more and these things are normal. 

I find my throat is often pretty red, but I don't have a sore throat.  I find myself constantly looking for thrush in my mouth.  I sometimes have this white coating on my tongue.  It isn't very noticable.  It doesn't look like any of the pix of thrush I've ever seen, so I'm pretty sure its nothing.  I've seen HIV negative people get whitish looking tongues sometimes.  I've noticed smokers get it a lot, too.  I've also noticed these very large taste buds at the very back of my tongue.  I've never noticed that before.  I guess they are taste buds.  I started checking my mouth out more after my dentist told me I had very soft gums.  He said he normally sees that in people who've had HIV for several years.   

Also, I went to the tanning bed for the first time in forever last week.  I know I always feel better when I've been out in the sun or in a tanning bed.  I got really dry skin after going that started flaking and was very itchy.  I got this very small rash on my shin.  This has never happened before.  It could've been from scratching it.

So whether you're on meds or not, I'm just curious what you think.  Am I just looking for things that were probably always there?  Did any of you have things that you thought were HIV related that were probably normal?  I know I'm turning into a hypochondriac.  I get an in-grown toe nail and worry an infection could kill me.  My doc continues to tell me I don't need meds yet.

Okay, I hope all of you are doing well.  I will also talk to my doc about these issues.  He only works with HIV one day a week, so I'm always doubting him.  I've asked him about big news issues about HIV and he always seems to either not know what I'm talking about or just barely knows.


Offline Buckmark

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Re: HIV Related or All In My Head?
« Reply #1 on: December 05, 2009, 10:25:20 AM »
I'm not a doctor.  But since you have a CD4 that is generally in the 800 range, it's hard to believe any of your issues are related to HIV.  I've been HIV+ for 20 years, and in all that time never had a CD4 much about 600, so I'm jealous.

Lots of people have coated tongues.  That's why they make tongue scrapers (I kid you not).  You've already determine that your tongue doesn't appear like any of the photos of tongues with thrush.  Oh, the bumps at the back of your tongue are probably the circumvallate papillae -- just a part of the tongue's anatomy.

You'd never get me in a tanning bed (I'm usually trying to stay out of the strong sunlight here in Texas).  But your dry skin could just be attributable to the season -- winter air is much dryer.  Yes, if you scratch too much, your skin will turn red.  Moisturize.

Not sure what to say about your "soft gums".  It doesn't sound HIV-related to me.  You're seeing your dentist, so he advise you on what to do.  He'll tell you if it is gingivitis or periodontal disease, and if so what treatments you could seek.  From time to time, my gums get irritated, and I've never attributed it to HIV.   A few weeks of rinsing with Listerine clears it up for me.  Regular brushing and flossing is important for everyone's oral health, not just those with HIV.

So, you can tell by now that I don't think that any of your complaints are related to HIV.  Of course, only your doctor and dentist can tell you for sure.  It's kinda normal when you are first diagnosed to think that every little ailment from hang-nails to halitosis is caused by HIV.  If you feel you are obsessing about this, or it is getting in the way of living your life, a therapist may be able to help you.  If you think you are turning into a hypochondriac, now is the time to nip it in the bud.

Lastly, you may want to considering switching to a doctor who is a full-time HIV / Infectious Disease specialist.  It could bring you a little more peace of mind.  But even then, don't expect him to have "big news issues" about HIV every time you visit.  That's what poz.com is for!   ;)


"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Assurbanipal

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Re: HIV Related or All In My Head?
« Reply #2 on: December 05, 2009, 11:45:16 AM »

It is true that lots of HIV negative people get cases of pneumonia.  It's serious, debilitating and people die or take months to recover.  When I had pneumonia a few times on the way to an AIDS diagnosis I was amazed at the size of the "pneumonia community", that gave me their personal stories and secondhand stories everywhere I went.  Pneumonia is really quite widespread and since you did not have PCP (the pneumonia linked to HIV), you probably shouldn't attribute your pneumonia to HIV.

My impression of you from what you have written is that you are suffering from a lot of anxiety. Right now that anxiety is focused on HIV, but that perhaps you have been anxious about other things in the past. 

You can take practical steps to address your HIV-related fears:
 - switch to a doctor who specializes in HIV full time;
 -  get a dentist who treats HIV infected patients;
 -  ask for a referral to a dermatologist who treat HIV+ patients to look over your skin issues.

But from your postings I think the fundamental issue you need to face up to is the anxiety you experience, which appears to be of a greater order of magnitude than most of us experience for extended durations.  I'd encourage you to set a first priority to talk to your doctor about a referral to treat the anxiety.


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 Inchlingblue

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Re: HIV Related or All In My Head?
« Reply #3 on: December 05, 2009, 12:08:53 PM »
Ted, do you know if by any chance you were given HIV meds while you were in the hospital for pneumonia?

I read (on Gallant's site) of someone who also got pneumonia and was not yet on meds for his HIV and the hospital gave him Sustiva while he was hospitalized, he did not even realize it until later. Giving him a triple cocktail is one thing but just one drug is downright negligent.

I'm not implying this happened in your case, just wondering if you know for sure one way or the other.

Re: your question about whether these things are all in your head. It's so hard to say but it has been shown that untreated HIV puts the body in a state of constant inflammation. HIV is able to replicate billions of times a day in the absence of meds. The point being that the immune system is being overtaxed, being constantly in a state of "alert" and this can cause lots of minor issues to crop up.

It's such a delicate balancing act determining whether or not to start meds but if you do have 800+ CD4s and a viral load under 24k, I guess you are not in immediate danger. If you are not sure about starting meds now, I'd seriously consider doing so when CD4s reach 500 or if viral load consistently stays above 50k.

HIV's Silent Dangers Make Early HIV Treatment Critical, Expert Says


« Last Edit: December 06, 2009, 10:37:49 AM by Inchlingblue »

Offline tommy246

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Re: HIV Related or All In My Head?
« Reply #4 on: December 06, 2009, 04:07:13 AM »
Ted you have been given some good advice above and you also are aware of how much anxiety you have. I went through this as many do but mine has gone after 1 year.
Important for me was to take control as i was thinking 24/7 about hiv with irrational fears.
It helped me when i gained confidence in my doctors they are hiv specialists for 20 years as local gps have limited knowledge. I  also almost couldnt believe the information out there saying hiv was now a chronic illness etc and as long as we adhere to meds and get our regular blood draws we will have a near to normal life span,yes its true get used to it. (in my case maybe longer as i had many bad habits).
I also had minor health issues which i thought were hiv and something really bad and just dealt with them all one by one. A pain in my foot i had visions of all sorts turned out to be a buried splinter for gods sake i worried for a year about this,a pain in my shoulder turned out to be caused by a bit of wear and tear in my neck( 49 now ) physio and exercise is sorting that one out , a couple of marks on my face were frozen off by the skin specialist( not hiv related),  tiny red dots on my body 2 or 3 put down to ageing, tiny floating black spots in front of my eyes very common dont worry about them said the eye specialist, you see i was paranoid about nothing.
However now on meds started last month 591 cd4 i feel mentally and physically better and more secure.
I believe some people also have an irrational fear about meds because of the awful experiences many suffered with early meds in the eighties and early ninetys, my doc told me 50% experience almost nothing and 40% very minor side effects only 10% have to find a new regimen.Hope this helps you move on ,all the best tommy.
Ps i also had pnuemonia in august not hiv related .
« Last Edit: December 06, 2009, 04:15:37 AM by tommy246 »
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND


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