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Author Topic: How long infected before diagnosis and impact on you  (Read 4005 times)

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Offline naftalim

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  • Posts: 102
How long infected before diagnosis and impact on you
« on: June 26, 2006, 01:27:15 AM »
I'm curious to see what others have been through. Looking at some of the postings, it seems that many were diagnosed fairly close to when they were infected.  I was diagnosed in May 2005, but have apparently been infected since April 1999. (Dont ask, very very incompetent doctors. I had 3 different diagnosis, including chronic fatigue syndrome, and even had surgery to have a lymph node removed) In May 2005 I had thrush, night sweats and weight loss, looked these up on the Internet and asked my Doctor for an HIV test. (I'm straight so really knew almost nothing about HIV.)

First few days were very scary, I thought I was going to die. Then I realized I wasnt going to die right away, so I was afraid of being sick and unable to work, and I would lose my home and be homeless. Well, that has not happened either. I entered a study in August 2005, and have done well, last labs are at CD4 249, VL <50 for several months now. (Baseline prior to study, CD4 was 94 and VL was over 100,000. So, now its been over a year, and I'm adjusting. The hardest thing is the relationship issue. A woman I really liked who had broken up with me prior to my diagnosis, reconnected and wanted to get back together so obviously I had to tell her and that was that. It drove the point home what I was missing. Also, as most of my friends/acquaintances are straight, some I could tell, some I will never be able to. Anyway, life goes on, some days you think that its all downhill and others you think that there are tons of opportuniites still to explore.

I guess I went through the very natural process that everyone goes through.

I used to be a serious distance runner, and I miss that a lot. I do jog a bit now and I am trying to be more consiistent, running helps me more than meds/ All the best

Offline allopathicholistic

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  • Posts: 3,258
Re: How long infected before diagnosis and impact on you
« Reply #1 on: June 26, 2006, 02:04:15 AM »
My history, at a glance:
Spring of 2000: Diagnosed with HIV ... Health started to decline immediately, but slowly
2004: Wasting started, i got sick MUCH more often and much more easily
End of 2004: Highly stressed, wasting more pronounced, big time abuse of antibiotics, Ambien, Viagra, cannabis. Seemed I was always sick, irritable, irrational
Summer of 2005: Nearly died twice. CD4 alarmingly low at 42 [Percentage unknown] Viral load up to 100,000. Obvious wasting at 134 pounds. 11 days straight of diarrea (i cried all 11 days :'()
Oct/Nov 2005: Hospital tested me for PCP, CMV, TB, KS, hep, lung & liver abnormalities. All tests came back clean thank GOD

Fast forward to today: VL <70, CD4 at 419 (18%) , 152 pounds. Height is 5 foot 9.

Bottom line - I shouldn't have waited 5 years to take action. It was stupid, stupid, stupid! I let fear control me which nearly cost me my life. Twice. Ciao.

Offline blbldude

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  • Posts: 15
Re: How long infected before diagnosis and impact on you
« Reply #2 on: June 26, 2006, 02:17:18 AM »
It sounds like you are a slow progressor like me. I was infected probably around 1984/85. I was in very good health until 2002 when I had an operation. After that my health declined. I waited as long as possible to start the meds--almost too long. My CD4 count was 11, VL 100,000 and I had started wasting when I finally went on the meds in late 2004. I quickly bounced back. My CD4 counts are still under 200 but VL is undetectable. Everyone is different. May your counts continue to improve and may you find that perfect relationship!

Offline JohnOso

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  • Posts: 816
Re: How long infected before diagnosis and impact on you
« Reply #3 on: June 26, 2006, 03:32:04 AM »
Diagnosis: January 2006.  Infected:  unknown. I'm not looking backwards to determine exactly when.  Could be many instances.

Impact:  I also thought I was going to die within the next few months.  I felt I was paralyzed for awhile.  Not physically, but I just didnt know what to do next. 

Most days I still don't know what to do next.  I get up, exercise, and go to work. 

And that gets me through that particular day. 

My lifeline is the Internet.  It's a great resource for not feeling so alone. 

And I do feel alone quite a bit.


John

Offline Poz Brit

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  • Posts: 158
Re: How long infected before diagnosis and impact on you
« Reply #4 on: June 26, 2006, 05:20:12 AM »
I am also a Straight Male, had never knowingly Knew anyone with HIV/AIDS, I have been in a very loving and trusting relationship with my Lady for nearly seven years now, and who is negative, was celibate for two years prior, and in a relationship for 13 year before that. Never ever thought about and knew nothing about HIV/AIDS, presumed I was safe and not at risk, with just two women in 22 years, then March 10th 2005 with in an Hour of feeling fit and well, was crunched up on the side of the road, in so much pain and discomfort, which was the start of a common Pneumonia, (Streptococcal) was Hospitalized for nearly three weeks, on oxygen and IV Antibiotics for two. After, Chronic Fatigue set in and  continual heath annoyances have plagued me, November 28th 2005 I was asked if I would take an HIV and Hepatitis test, just to count them out. Next day I had a phone call, as promised, and was told I tested Positive to HIV, (later I leaned I was negative to Hepatitis) Stunned, in tears I thought I was a dead man, for my ignorance of this bug and the treatment available? I spent the time until the next afternoon when the appointment with the ID clinic was scheduled, in complete shock and devastation,
Now with the wonderful help and understanding from the Clinic, My fellow passengers on this AidsMed site, and the people from ďThe Terrance Higgins TrustĒ here in the UK, I feel more informed and a little at ease, Anxiety seems to be a constant companion, and how and why? Is always in my thoughts, and there are still the occasional tears, but its here, and I now realise it is not going to go away, so, we are slowly leaning to live with each other, it gnaws steadily away and some times, for ten minuets or so, I forget about it.

John(UK)   

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: How long infected before diagnosis and impact on you
« Reply #5 on: June 26, 2006, 10:59:04 AM »
OK,
Here's the short version.

Tested positive in 1985. Ignored it, spent the next seven years in drunken/drug-induced haze.

Saw doctor for the first time in 1992. After lengthy discussions and review of medical records (yes, I'm anal about keeping those things) doctor said she believes I was infected in 1980.

Started meds in 1996. Still on the same regimen.

Viral load undetectable since June 1996. CD4s in January - 1,462 (40-41 percent).

Had labs drawn last week. Cholesterol/blood lipids now current concern.

When did I adjust to it? I adjust every day.

HUGS,

Mark
« Last Edit: June 26, 2006, 11:00:54 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online RapidRod

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  • Posts: 15,276
Re: How long infected before diagnosis and impact on you
« Reply #6 on: June 26, 2006, 11:11:52 AM »
One month shy of 21 years.

Offline Life

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  • Posts: 2,388
  • Member 2005
Re: How long infected before diagnosis and impact on you
« Reply #7 on: June 26, 2006, 11:18:04 AM »
Your picture is getting me all hot and bothered!!  I live in Aspen and you have a similar interest in outdoors evidently... Come out to Aspen someday and I will make some turns with you!  Everything you have said is absolutely normal.  But whenever you got a bit worried or distressed STOP.  And remember you have many opportunities here to get through all of these feelings or at least drop their impact on your daily mental life.   If these thoughts pop up know these are DOING YOU ABSOLUTELY NO GOOD PHYSICALLY OR MENTALLY.  If you have already found a HIV DOC, great..  If not, that's your next step.  I strongly would not re comend your GP in handling hiv for you.   The virus is so dynamic, you owe yourself someone who has committed his/her life to staying on top of this for you.  With that in your hands, it allows you to continue on.  Let the ID DOCs do their job for you, then you can concentrate on the mental side of ACCEPTANCE and all those other wonderful feelings you get to move through.  I am still moving through them and they are becoming manageable now.  At least I know when I am in the stinkin thinkin mode and I pop my head back out of the sand and look squarely in the face the facts, the knowledge and the hope for my life to continue in a very productive and positive way.   If it was not hIV, it would or even will be some other life issue that's going to come along and make me do my worry dance.   Learn from this time.  Know the pain you feel is not really pain, but growth mentally, spiritually and emotionally.   And these things take time and they do require a bit of sadness, emotional termoil bla bla bla.  Know that you will come out the other end a more well rounded individual (only if you want to however) make something good out of this.  You have know other alternative....

Love ;D

Offline skeebo1969

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Re: How long infected before diagnosis and impact on you
« Reply #8 on: June 26, 2006, 12:36:47 PM »

Private
« Last Edit: February 17, 2007, 07:16:45 AM by skeebo1969 »
I despise the song Love is in the Air, you should too.

Offline tuggem

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  • Ron Hudson, same body, new face
    • 2sides2ron
Re: How long infected before diagnosis and impact on you
« Reply #9 on: June 26, 2006, 12:53:52 PM »
I started having symptoms about 1982-83...rapid weight loss, swollen lymph nodes.  I was told it was all in my head by the PAs I saw.  Eventually, I lost about 15 pounds suddenly in spring 1985 and was tested in August.  They tried every possible test first (back then, even a test for HIV could get you into trouble if on your record) then tested me for HIV in Nov/Dec.  I got word by phone at work on Thursday, Dec. 12, 1985 at 3:45 pm on a gray rainy day.  It impacted me immediately because I was working at Burroughs Wellcome as Section Head of the clinical studies programming section for data processing (not statistics).  We had been in the process of working toward approval of AZT, so I knew exactly what I was facing.

I have no idea who infected me, because I came out in 1981 and thought I had found a new toy.  No one talked about AIDS or how to prevent it, because they didn't know and certainly didn't know its worldwide scope at that time.  So, I played around like gay men did back then, and I could have been infected on many occasions.  I found a partner in 1982 and settled into a 15 year relationship.  He never tested positive, thank goodness, so I must have been infected in the 1981-82 timeframe.

My first close friend died in 1987, then another in 1989 and it grew from there.  I lost my "last" best friend two years ago.
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline DanielMark

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  • Posts: 1,475
Re: How long infected before diagnosis and impact on you
« Reply #10 on: June 26, 2006, 03:50:30 PM »
I'm 46, and tested Poz in September of 1987. My doctor called me into his office and said: Well this isn't the kind of news I like to give anybody, but .... He then proceeded to tell me I was looking at a life expectancy of six months or so.

I had clues for a long time that I was likely infected, so although I was quasi prepared, it still shook me up. Especially that prognosis. This was of course still the 1980s.

Since then I've been in and out of the (clinical) state of AIDS a few times, but so far have made it back alive. I've had bouts with shingles (not for a few years now) and a major case of anal warts, but havenít had to deal with any major opportunistic infections yet.

I very stupidly declined protease inhibitors for years, until November of 2002 when I collapsed in line at a checkout of a grocery store. My viral the load was more than 500,000 at that point, and HIV had hijacked me, as my doctor likes to put it.

I ended up spending two days in a hospital emergency department. I donít remember the collapse or much about my hospital stay except that I woke up and saw this "thing" in my hand (IV) and promptly removed it. My ex Ken says I also went wandering outside one night, upsetting the nursing staff even more. I wonder where I was going?

Iíve been taking Kaletra (lopinavir and ritonavir) with Combivir since then. Things have clearly improved over time. Last few exams, my viral load remains undetectable and my CD4 counts are now above 1100. A major improvement in my case
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Robert

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Re: How long infected before diagnosis and impact on you
« Reply #11 on: June 26, 2006, 04:11:23 PM »
Hey eric...

It looks to me like our friend here is skiing at up Lake Tahoe.  Behind him is a big, beautiful lake.  I've skied Colorado, Alaska, Utah, New Mexico, and California (and Switzerland).  The only place  I know of with a beautiful lake like that is Tahoe.

Anyway, not to hijack your thread, but the virus impacted me right away.  Of course I found out when I was sick with PCP and almost kicked the bucket.  I've been disabled ever since and so think about it everyday but I don't dwell on it.  Now, our friend Eric, from Aspen, works 80+hours/week, skies, climbs, hikes, shoots (and eats leaves) so it hasn't had much of an impact on him.

robert
..........

Offline Eldon

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  • Posts: 2,664
Re: How long infected before diagnosis and impact on you
« Reply #12 on: June 26, 2006, 06:43:29 PM »
Jump on your meds as soon as possible and do not wait. I've been dealing with this since 1990 and I have had my ups and downs along the way. I try to remain positive through it all.

Offline Oceanbeach

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Re: How long infected before diagnosis and impact on you
« Reply #13 on: June 26, 2006, 08:42:30 PM »
I use to test every 6 months, July and December.  I tested negative in July 1994 and starting having skin rash problems a few weeks after the test was completed.  Doctor thought since my work was so high stress, I may have had a little nervous breakdown (12 years later, I am having that now).

Went from MD to Dermatologist, who suggested it may be HIV and inquired about any testing.  I had just had a negative test and was more inclined to believe the nervous breakdown theory.  I fired the pricey Seal Beach Dermatologist and bought a 3 dollar bottle of aloe vera lotion.  The skin rash went away and everything was fine, until December... A positive HIV test, a positive HIV retest.  It appears the skin rash was seroconversion.

I had been involved with the set up and design of a program for American Airlines in the early days because the term or ideas of ASO had not been established yet.  I worked with some long term survivors and Ogilvy Mather Advertising L.A. to establish this group.  I was aware of the need for early treatment and where and how to obtain services.  I got into care immediately, with some minor glitches and still got an AIDS diagnosis within 2 years.  Such is life, we deal with it.  Have the best day
Michael

www.Commission-on-AIDS.org

Offline naftalim

  • Member
  • Posts: 102
Re: How long infected before diagnosis and impact on you
« Reply #14 on: June 27, 2006, 04:49:09 PM »
Your picture is getting me all hot and bothered!!  I live in Aspen and you have a similar interest in outdoors evidently...

Hey, I look ok standing there, but not that smooth when I actually move those skis. I can do black runs, but Warren Miller will not be considering me for any videos. Americas Funniiest Videos might. Thanks for the positive feedback. My down moments are just that, moments.

Offline naftalim

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  • Posts: 102
Re: How long infected before diagnosis and impact on you
« Reply #15 on: June 27, 2006, 05:02:52 PM »
Actually, this is Cypress Mountain, just 20 minutes from Vancouver, BC. smaller ski area than Whistler which is about 2 hours away. Whistler is quite nice too.

http://www.cypressmountain.com/index.asp

I am seeing a reall good HIV Doctor for the past year+, he is running the study that I am on (Pfizer)

Hey eric...

It looks to me like our friend here is skiing at up Lake Tahoe.  Behind him is a big, beautiful lake.  I've skied Colorado, Alaska, Utah, New Mexico, and California (and Switzerland).  The only place  I know of with a beautiful lake like that is Tahoe.

Anyway, not to hijack your thread, but the virus impacted me right away.  Of course I found out when I was sick with PCP and almost kicked the bucket.  I've been disabled ever since and so think about it everyday but I don't dwell on it.  Now, our friend Eric, from Aspen, works 80+hours/week, skies, climbs, hikes, shoots (and eats leaves) so it hasn't had much of an impact on him.

robert

Offline Life

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  • Member 2005
Re: How long infected before diagnosis and impact on you
« Reply #16 on: June 27, 2006, 11:15:37 PM »
Sorry,  I was spitting out some leaves out of my mouth... Ive hit Whistler two times and have been by Cypress in a summer a long time ago...  Beautiful country..  I really dont get to far out of Colorado these days..  What scares me the most is loosing the abilty to do the things I do.  I dont think I do anything to accessive (for me).  But if I stay busy with stuff and scaring the crap out of myself by putting myself on an "edge", I find it takes me away from all of this...  Make sense?  I dont know.. If you are ever in my neck of the woods,  lets play! ;D

Love

Offline thirtysomething

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  • Posts: 124
Re: How long infected before diagnosis and impact on you
« Reply #17 on: June 28, 2006, 12:23:20 AM »
I was diagnosed on March, 9th 2006.

It's really weird because I first used the home access kit (which I used all the time every 6 months) and the result came out 'inconclusive'. Then I went to this hospital 2 days later and the result turned out Negative.

AND then, I went to another anonymous test site near my home the very next day after my negative result,  and my result was positive!! Damn, in less than 24 hours, I had different disastrous result! I was so upset and angry with the test methods. I went from Inconclusive -> Negative -> Positive, in less than 4 days.

But anyway, I'm not on HIV meds yet. I'm on latent TB meds right now. My viral load is still undetectable and CD4 in 900 range.

I had to make lot of changes in these past 3 months and I'm moving to Toronto next week. I'm lucky that I've got a new job there in such short time. I hope and pray that things turn out well.
« Last Edit: June 28, 2006, 12:27:28 AM by thirtysomething »

tendai

  • Guest
Re: How long infected before diagnosis and impact on you
« Reply #18 on: June 28, 2006, 09:40:06 AM »
i'm not so sure when i got it, i can approximate that it was in 2004 that was the year i did a lot of stupid things.  i was diagnosed in april 2005. its changed my attitude towards life in that i have to take care of myself and i am going thru this alone now as i have not told anyone except my ex-bf. i eat better than i used to.  its relationships thats been a problem for me coz i cant find the guts to go telling potential boyfriends that i'm a loaded gun. i suppose i have to find some poz guy or something. i dont know.  i'm still working on the confidence thing. make like i dont have a virus trying to kill me, its hard but there's no choice is there..

Offline doyourowndamndishes

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Re: How long infected before diagnosis and impact on you
« Reply #19 on: June 28, 2006, 01:05:04 PM »
OY!

Now I feel like a broken record; I keep skipping on these details!

Diagnosed 7 or 8 years ago.  I don't remember but then dates and specific numbers have never been important to me.  Also, I see me doctor enough, he's close by to home and work so if I need them it's easily retrieved.  Anyway, after initial diagnosis it took me about a year before I was mentally ready to deal with it.  No, I was not in denial: I knew I had hiv before I went for the blood test.  I just had a gut feeling and I wanted my doctor to confirm that hunch.  My initial numbers were vl 150,000+; cd4s 260s.  Since meds were not immediately required and I was not in the best head space at that time, I did not bother to go back for the 2nd test till a year (give or take a few weeks) later.  At that point cd4s had dropped to 180s, vl no idea.  My doctor gave me about a week to mull over options and that was the only time I felt scared or worried: I was afraid to make the wrong choice in medications as I knew nothing about them and after reading all the possible side effects, I REALLY was not too thrilled with them!  Further, I know enough people who have hiv and lipo and that was hard to accept as a possible reality for me.  If it wasn't for my doctor comforting me by saying that he would NEVER allow me to make any decision that he thought, in his professional opinion, was not a good choice.  Other than the initial drug combo fear and the initial switch of meds fear (initial combo failed) I've been pretty ok with the whole hiv thing.  Sure I don't like that fact that I have it but I am ok with having it and have made many better changes in my life because of it.  How do I deal with things: daily as each new challenge comes my way. I find that if I go with the flow more often than naught I have less expectations of things and people.  With fewer expectations comes less heart aches and more chances to be pleasantly surprised!

Cheers,

Alan

"All that we are is theresult of what we have thought." -Buddha

Offline allopathicholistic

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Re: How long infected before diagnosis and impact on you
« Reply #20 on: June 28, 2006, 04:34:28 PM »
its relationships thats been a problem for me coz i cant find the guts to go telling potential boyfriends that i'm a loaded gun. i suppose i have to find some poz guy or something. i dont know.  i'm still working on the confidence thing.

whomever planted that "loaded gun" crap in your head should be slapped. we are NOT loaded guns (that really irks me i'm sorry). we're human beings with feelings, ideas, love, kindness, laughter, tears, flesh and bones. we are not damaged goods nor are we inferior  nor any similar NONSENSE .... ARRrgghhhh!!!  >:(  .... okay. i'm calm now  8)  :-*

 


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