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Author Topic: A New Life  (Read 3134 times)

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Offline life2

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A New Life
« on: February 24, 2013, 01:32:56 AM »
Hello, I've been lurking here for a while.  I just turned 40 and for much of my life have had autoimmune issues which never impacted my extremely active lifestyle until 6 years ago when they became pretty severe and illness became a way of life for me, as did loneliness.  About two years ago, after losing several relatives including both parents I experienced a remission from the autoimmune issues and had a brief relationship that lasted about two months.  As it was ending I became very sick with flu like symptoms and landed in the hospital with severe complications from my autoimmune issues. This was likely when I was initially infected.  I recovered but still battled my autoimmune issues until early 2012 when I went on much larger doses of steroids to suppress them. 

I remained on the steroids for nearly 7 months as I tapered off of them slowly.  A great thing happened.  I went into full remission, but I was still tired all of the time.  A few weeks later I had a shingles breakout.  My Dr. told me it was likely a result of the steroid treatment as being on them as long as I was could have long term effects to my immune system.  As I googled my symptoms one common theme kept recurring in the search results so I ordered the home access hiv test.  I honestly thought there was very little chance I could be positive.  I had been tested 5 years ago when my medical issues increased in severity and since that time I had only had the one relationship.  I'm a heterosexual male and thought the chances of contracting HIV through vaginal intercourse were nearly impossible. 

It's never you until the day it's you.

On wed, Nov 28th, at about 5:45pm (I'll remember that date forever) I got home from work and picked up the phone to get my results.  I was so confident the results would come back negative I never prepared myself for the possibility of hearing I was positive.  I got sick when I heard that my blood tested positive for the hiv-1 antibodies. At that moment everything that had been programmed into me from the media over the last few decades flashed into my head and I remember saying 'I've killed myself'.  I went into work the next day and can honestly say it was the longest day of my life.  I took Friday off.  I had no idea where to go and what to do.  I spent several days living on my couch and downing NyQuil just to sleep with the tv on around the clock because i couldn't stand the silence.  From searching online I discovered that i needed to find an HIV specialist and not just any doctor but in my area of the country they don't promote themselves at all.  Fortunately there is an AHF clinic here and I scheduled an appt.  They were empathetic and assured me that I was going to be OK.  They tested to confirm on 12/5 and enrolled me on 12/6 and I had my initial lab work done. I knew the results would likely be bad since I had shingles and the complete disappearance of my autoimmune issues likely meant my immune system had been crushed.

My next appt wouldn't be until Jan 3 due to the holidays but on Fri 12/22 my ID doc called me to tell me my CD4 count was below 200 and she was prescribing antibiotics to prevent pneumonia.  By this time I had done enough research to know what that meant without asking any more details.  I was leaving town to visit family later that night and though I wanted to ask her exactly what my cd4 count was and if there were co-infections a part of me just didn't want to know when I was about to spend time with my family. I didn't ask.  She prescribed dapsone (I can't take bactrim) and I ended up having a severe reaction to it over Christmas break and had to stop taking it.  I never told my family about it. Despite getting horribly sick from the dapsone it was the best Christmas I've ever had. Amazing what perspective will do.

On Jan 3rd I had my follow up on my initial lab work.  CD4 was 149, viral load was 234,000, ratio was 10%.  The 'A' word was never mentioned.  I knew what the lab results meant and i sensed my ID knew that I knew.  No co-infection, no resistance.  She changed the antibiotic to Mopren and prescribed Complera.  I had not researched the meds and was very surprised to discover there were one pill a day options.  I was horrified at the cost.  On Feb 1st I had my next lab work and CD4 was 310, vl was 2442 and ratio was 17%.  I've had some minor side effects from the meds, mostly fatigue that comes and goes, but amazingly I generally have more energy than I've had in nearly 10 years.  One of my biggest fears now is that my autoimmune issues will resurface as my immune system improves.

Physically I think I'm doing really well and after an initial week of panic and anxiety I think I'm coping ok emotionally.  I no longer blame the woman who I contracted this from and take full responsibility myself.  I did this and I own it.  I feel comfortable in the treatment I'm getting and for someone newly infected having a clinic with the lab and pharmacy on site seems very convenient and private.  The things in life I thought were important before have radically changed.  On one hand I'm excited about the possibility of being freed from the debilitating autoimmune issues while on the other depressed about the loneliness I'll likely battle because of having HIV.
« Last Edit: February 24, 2013, 01:34:33 AM by life2 »

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: A New Life
« Reply #1 on: February 24, 2013, 05:49:29 AM »
Hi Life, welcome to the forums.

I have a friend who suffered greatly from psoriasis (an autoimmune condition) for most of his adult life - until he became hiv positive. (Also from vaginal sex, btw. You're not alone in that regard.)

His psoriasis disappeared in the time between becoming poz and starting treatment - he was able to go about five years following diagnosis before he went on meds. After he started meds the psoriasis came back, but it is much less severe than it was previously. It hardly ever bothers him now, but he does suffer the occasional flair-up.

An aside - some people who are experiencing long-term, untreated, advanced hiv infection (aka aids) will develop psoriasis. That's a bit different to what my friend experienced as his psoriasis was a pre-existing condition.

How your own autoimmune problems will react to your new passenger will be unique to you. For some people, the presence of hiv seems to "switch off" that part of the immune system that was previously "hyperactive" and attacking your own body. This "switching off" is sometimes permanent; sometimes the autoimmune problem will resurface in varying degrees once treatment is started.

Fingers crossed that your hiv will have switched off that hyperactive part of your immune system and you'll not suffer from autoimmune problems going forward. Hiv just might be your silver lining where your autoimmune issues are concerned. Funny that, eh? Live can be strange.

Other than that, you seem to be coping well. You've responded very well to the meds, very quickly. You'll likely continue to see a drop in your VL (may even to UD by your next labs) and a continued rise in your CD4s. This dramatic improvement in numbers is often seen when a person is diagnosed and put on meds very early on following becoming infected.

You also seem to have levelled out emotionally. The first year is a bit of a rollercoaster ride, so you should be aware that you may still have some difficult times ahead. That's completely normal. When things get tough, you have us to vent to. We've all been there, done that, so we'll understand what you're going through.

Hang in there!

Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tednlou2

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Re: A New Life
« Reply #2 on: February 25, 2013, 01:43:06 AM »
Life, welcome to the forums.  It does sound like you're handling this as well as can be expected.  I also hope your autoimmune issues stay at bay, and don't give you additional problems. 

What you said about not wanting to know certain details stuck out to me.  During holidays or when going on a trip, I often prefer not to know my latest labs, if they are available before my appt.  Although, I find I will wonder whether they've changed the whole time I am gone, so I may as well have just gotten them. 

The TV thing stuck out to me as well.  I began sleeping apart from my partner, because I needed the TV on.  I couldn't stand the silence.  A fan wasn't enough.  In the silence, my mind would think too many things.  I didn't want to take sleep meds, so falling asleep to the TV helped.  But, I would have Jay Leno and reruns of sitcoms enter my dreams. 

All the best and keep in touch.


Offline msavoy

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  • Posts: 10
Re: A New Life
« Reply #3 on: March 03, 2013, 09:57:44 PM »
Hey Life,
I've had a similar thing happen to me.  In 2008 I moved into an apartment that was damaged by water, and little did I know had a huge mold problem.  Anyway I ended up getting really sick during the 2 years I lived there and finally realised that it was my environment that was making me sick.  Anyway once I found out I moved but my health problems continued. I became hypersensitive to many many things, one of them being my office environment which relies on a HVAC system for bringing air in from outside.  Whenever I come to work my skin burns, I get headaches, water eyes, sneezing, and the list goes on. 

Anyway, when I got sick this xmas from what was my initiatl hiv infection (which I thought was the flu), I found it weird when I came to work during that time and my body's reaction to the office was greatly reduced.  I was thinking omg something about this flu has cured me of my sensitivities here at work. 

Anyway I found out a little over a week ago that I'm hiv positive and was scared at the beginning because I know that my immune system has been constantly engaged basically since 2008.  I haven't gotten my CD4 count back yet but I'm scared that it will be really low as well since I think it was low even before I got infected back in December.  It's reassuring however that you rebounded so quickly once you started treatment so I'm hopeful after reading your story that I'll bounce back quickly as well.

I find that now that I'm recoving for the "flu," however, that I am starting to react again at work which in one way is a good thing because it must mean my immune system is kicking back in, but in another way it kinda sucks because it makes it really hard to come into work everyday and have to deal with the symptoms. 

Anyhoo, best of luck to you and thanks for sharing your story ;-)


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