hiv+ for 30 years or more?

[mitch777]

Hi everyone!
I have been on this site off and on for a few years and was wondering if anyone has been positive for 30 years or more. (It will be be 30 years for me in 2 months)
Sorry for the "poll" but I recently applied for disabilty and am thinking I am a pretty rare breed. (Not that it makes any difference, but I have yet to meet anyone in my boat in person or on line.)
Hope to hear from you LTS!!!
Thanks.
(SSDI is making me take a dementia test. I always try hard on tests but I KNOW I am disabled and hope I fail this one. Hard to believe they can deny me but...)

[wolfter]

I don't recall any other 30 year survivors here.  Congratulations.  I know there are a lot of us around the 26 year mark as 1986 was the year of the horny male.   

Wolfie

[OneTampa]

Well, in 4 months I will be at 28 years and slowly closing in on the big 30.

[Miss Philicia]

Actually there are some members here who had AIDS defining numbers upon taking an HIV test when it was first available in 1985, so one may infer that they have been infected for at least 30 years and possibly longer.

[denb45]

Humm let me see here, I didn't test POZ+ until 87, but it was probably around 81 or 83 when I 1st got teh AIDS w/ a dirty syringe 

[OneTampa]

Actually there are some members here who had AIDS defining numbers upon taking an HIV test when it was first available in 1985, so one may infer that they have been infected for at least 30 years and possibly longer.

Ms. P. you are correct.  My initial CD4 was around 75 according to my medical records.

[mitch777]

Thanks Miss Philicia. I guess we will never really know how many of us are 30+ year survivors seeing as the test wasn't available til 1985.
It just that I never hear people speak with confidence that they have been poz for so long.
I remember the disease hitting me like a club over my head for the first several months. Total fatigue and fevers. And, of coarse thinking that the grim reaper was just around the corner.
The life saving meds became available just in time as my viral load suddenly went through the roof.
Since then, everthing has been just peaches and cream. ha.
So, should I have concern about being turned down for ssdi?
My stats look good.
Viral load undetectable, t-cells have remained in the 600's, still always feel like crap and can no longer focus.
I have not had the physical troubles that many of you have had to face. (yet??)
Sorry about rambling on. (I am originally from Minnesota and part of the Rose Niland in me seems to popping up with more frequency lately.)

[idee]

My hubby has had it 24 years and I have been postive 17 years. I don't Know anyone else with the virus but my hubby. Just wanted to say hello.

[Mishma]

27-30 years myself.

I had to hire a disability lawyer after my initial application for SSDI for dementia was rejected. I was told at the time this was common and I was referred to a disability firm. The lawyer takes no money up front but they do get a % (I can't remember how much) of your first disability check if they win. I can't remember what happens if you lose ( their goes the memory again). Bottom line was we won. 
Good luck to you. 

[mitch777]

thanks mishma.
i started the process with a lawyer. wanted them to know i wasn't kidding from the start.
i believe by law that they can't charge more than 6000.00 and am pretty sure they don't get anything if i lose. a chance they take in representing me.
glad you made it through the process.
was the appeal difficult???
what more info did you need to prove your case??
any help from anyone with this question would be helpful.

[Solo_LTSurvivor]

thanks mishma.
i started the process with a lawyer. wanted them to know i wasn't kidding from the start.
i believe by law that they can't charge more than 6000.00 and am pretty sure they don't get anything if i lose. a chance they take in representing me.
glad you made it through the process.
was the appeal difficult???
what more info did you need to prove your case??
any help from anyone with this question would be helpful.

Mitch, JR Gabbard is the moderator of the Benefits Program Forum here and is also an attorney.  You might want to post your question over there and see if he can offer some insight once he sees your thread.

I'm sure you do know that each situation will vary depending on the individual but at least some general information, which I'm sure JR can provide, will prove to be somewhat helpful.

[LongTimeSurvivor]

There are two possible times that I think would be prime candidates for my infection. One was the summer of 1978. Went into the hospital very sick. Stayed for 13 days. They did every test under the sun and then some. Never could figure out what was wrong. Eventually got better and was sent home. That would put me at 34 years.

The other time was probably spring 1985. Caught what seemed to be the flu but wasn't really flu season...not that you can't catch the flu anytime. That would put me at 27 years.

Did the test about six months after it became available and then progressed to an AIDS diagnosis (thrush) before my second year was done. Then nothing, t-cells stayed at 700, viral load remained undetectable...until I started on Atripla.

However, regardless of the number of years, I was a slow progressor. Drugs started about 3 years ago. Aside from that I'm relatively healthy. Work, go to the gym, lead a "normal" life as it were (except for the pills and shots everyday). So...other than possibly matching you for number of years my AIDS trajectory has been markedly different from what you've mentioned and what most on this site experienced.

Hope there are more 30+ out there then we might think. Everyone in my age group couldn't have died...could they?

[LTSchris]

I'm at 27 years and 3 months. The halfway mark was hard for me. Now I feel I've entered my "golden years" at 52. Filled 14 prescriptions this month. Having high-grade precancerous tissue removed from the rectum for the second time next week. I believe it was Janis Joplin who sang, "Take it! Take another little piece of my asshole baby!"

[OneTampa]

I believe it was Janis Joplin who sang, "Take it! Take another little piece of my asshole baby!"

Twirl, snap.....and pause....now bend over. 

Wishing you the best with your coming procedure.

Take care.

[jdb73112]

      Just celebrated my 30th anniversary in June!! I converted in June 1982, and I know this for a couple of reasons. First, was from a strong suspicion, and second was from laboratory confirmation. That June I had what would turn out to be "typical" seroconversion symptoms (fever, swollen lymph nodes, muscle aches, headache, flu-like symptoms). But to put this in context, first, some history.
   
     When my first partner gave me gonorrhea (again) in 1978 I went to the San Francisco STD clinic to be treated and was asked to enroll in a Hepatitis B study. From that study I got into several other studies where blood was drawn serially over several years. Somehow I got rolled to the original COHORT study group that came from the SF STD clinic. I was in the Leon McKusick AIDS Behavioral Research Project ten years, and I think it was in 1986 that I got a letter from that group saying that my blood samples from the various studies had been thawed and were tested for HIV. They told me that my results were available to me, BUT, they cautioned “you may want to seriously consider whether or not you would like to have this information. Since there is no treatment available at this time you may find the stress of knowing more harmful than helpful.” I may not have that quote exactly right, but I remember the tone very clearly! Since I was an RN working in the front lines of AIDS care in San Francisco at the time my immediate reaction was that I did NOT want to know!! I had assumed for a long time that I was infected because of the many STDs my first partner had shared with me from 1977 to 1984 because he was incredibly promiscuous (ain’t love grand!). So, I declined their offer until 1988 when I wrote them and asked for my results. True to my suspicions, I was negative in the spring of 1982, and positive in the fall of 1982!
   
      I have been incredibly fortunate. Many physicians who have cared for me over the years have postulated that one reason I am still alive today is because I got the “original” strain of HIV before it got more powerful and pesky! I know there have to be other factors, not the least of which is divine in nature, but because of my work in the medical field I had also done a lot to take care of myself in general (gym, diet, vitamins, no drugs, no drinking, etc.) and always had protected sex after we found out what was going on. There was no such thing as “safer sex” back then, and I don’t blame my first partner because as it turns out, what we didn’t know can and did hurt us both! He is still alive and well too, and we are friends over 30 years later. I did not start on any medication until 1995, and I have always thanked God that there were/are even medications to take, since I saw so many of my patients and friends die before anything was available. I still do my best every day to live my life as Positively Pozitive as I can. I have a wonderful man in my life who loves me no matter what, and that is the very best medicine I could wish for, and he gives it to me for free!

[mitch777]

jdb,
sounds alot like me.
i agree we were very lucky to have made it until the better meds became available no matter what the reason.
while i can now feel the toll the virus and meds have taken on my body, i still try my best to stay positive.
i also am fortunate to have a lover (of 18 years) who keeps me smileing and laughing.
wether it's a partner or close friends, having them be there through the journey can make life a banquet.
(sorry, just saw "Mame")
happy "anniversary"!

[OneTampa]

@Mitch and Jdb: I am co-signing your posts with a diamond tip pen.

[red_Dragon888]

POZ since Nov 1984.

[SirPrize]

Infected sometime between '81 - '83.  Always used protection '84 - '86 and celibate (fodder for another topic) since then !!!  So I'm somewhere in the 30 year range.

May be a bit late in replying to the SSDI but the "magic" wording is.....cannot gain sustainful employment.....They could care less if you walk into the office with one eye hanging out, break into convulsions, etc.  Don't apply stating your symptoms.  State why your symptoms won't allow you to "sustain gainful employment."  It's a long process so make yourself comfortable.

[EUROLOVE]

I just want to say that I have a profound amount of respect for you guys! Sharing our stories here is so helpful. 30+ years is an achievement. It's your fight, our fight, that eventually will give this disease a new face, and later evaporate into the books of human history.



love

[Andy Velez]

Euro, your remarks are appreciated. However, this forum is specifically limited as stated in the opening thread, to those who were diagnosed prior to 1996. You are not in the category so please respect the rule and don't post in this forum again.

Thanks for your cooperation.

[EUROLOVE]

Sorry Andy, I completely missed that part.
Thanks for the heads up, I wont post here again.

[ralep]

In June 2012 it will be 29 years for me , and will turn  62 Yo. All because we where there  as Guinea pig  to try  all these  new treatment  available , and  get  to live and  see what long term used of antiviral drug can do a someone body. it work for some of us ,fortunately I am one of them .But  you do not get to be a long term survivor without  side effect and  scaring incidents.  Lypoatrophy and countless bout of lung problem from bronchitis to pneumonia,  , osteoporosis  , 3 times  cancers  and much more trust me . Overall doing excellent  and stable for now and undetectable ,  You always have to be pro active about any issue coming at you .I had to  stop working 10 years ago , since I am  living with no stress as possible .I  exercising  regularly , eating well, well connected with friends ,I have an positive  outlook on life and I hope to go on for a while .
PS. Who knew 29 years ago ,after they tell you you are HIV , you go home with  2 to 5 years to live !  They are waiting for us to write  the long term survival story .
I am not religious , but I  make a point to  appreciated everyday .

[mitch777]

I have officially made it 30 years hiv+!
 

mitch

[Buckmark]

I have officially made it 30 years hiv+!
 

mitch

Congratulations.  There should be a lapel pin or membership card that comes with this event.

Now you have to start working on the next 30.      I can't wait to be a senior citizen with HIV.

[LongTimeSurvivor]

Or maybe a toaster...yeah, a toaster would be good for reaching 30 years...and not one of those cheap ones.

Something like a West Bend TEM4500 but for six slices!

Congratulations...I guess...

[mitch777]

thanks guys!

hmmm....
a pin, membership card, a toaster?

what to choose?? what to choose??

i think i will have to sleep on it.

[wolfter]

Hope you don't mind me taking over this thread just a moment but I have a question along these lines that I don't want to start a new thread for.  Kinda relates thought.

Perhaps one of the mods will chime in. 

I've been thinking back to the first days of beginning of this epidemic.  I always assumed I got infected around 86 because I had a child in 84 and neither him or him mother tested positive.  Is it possible to be + and impregnate someone and neither of them become positive?

It all gets me thinking to the very first days and how we all told it was large cities who had to worry.  I wonder how many  small regions had the high number of early AIDS cases that were brushed under the carpet.

A guy a couple of years older than me immediately went to San Fran as soon as he graduated.  I graduated about the time he returned and we were pretty much a slutty group in privacy.  Bisexuality was common.  By 1985, they were dying off already. 

[Miss Philicia]

I had a child in 84

I thought I specifically told you not to keep secrets from me. This is like 100 times worse than wearing sweatpants amirite?

[Ann]

Perhaps one of the mods will chime in. 

Ok, since I've been invited to comment...

I've been thinking back to the first days of beginning of this epidemic.  I always assumed I got infected around 86 because I had a child in 84 and neither him or him mother tested positive.  Is it possible to be + and impregnate someone and neither of them become positive?

Yes, it is possible. We've had several women here over the years who had hiv positive male partners but yet remained hiv negative. It's possible that your babymama is one of them, but there's no way you'll ever be able to know for sure.

The baby would have no way of becoming poz unless his mother was already poz. The virus does not directly infect the egg when it's fertilized; when babies are born positive, its because they were infected during pregnancy or birth.

Oh, and by the way, being born to a positive woman - even if she's not on meds - is not a guarantee that the baby will end up poz. Some lucky ones are born negative even when the mother is not being treated, although it's far better for the mother to be on meds, as it lowers the incidence of the baby being born poz to somewhere less than 2%.

I thought I specifically told you not to keep secrets from me. This is like 100 times worse than wearing sweatpants amirite?

Where do you think his grandkid(s) came from?

[wolfter]

I thought I specifically told you not to keep secrets from me. This is like 100 times worse than wearing sweatpants amirite?

I'm surprised that wasn't already in your data bank.  I mentioned that I got a girl pregnant right around the time we graduated from highschool and even did the honorable thing by marrying her.  We did the quicky divorce thing almost immediately after our son was born.  We really didn't live as a married couple, it was all for show as her parents were insistent upon it.

Ann, I OH SO wish I was a grandpa.  I've made references indicating that it's time for my son to at least be irresponsible if he's not going to get married and start a family.  But not a gpa yet.  I guess that's my continued punishment.

Back to the original thread now.   

I just wonder about the actual numbers attributed to other illnesses rather than AIDS.  To have lost so many friends by the mid 80's would indicate that we had the virus in our small community long before it became well known.  Around the same time, we had a high number of suicides.  A lot of these people were not the sort you would have expected it from.  Most were damn good looking, from well to do families and had very bright futures.  I know I considered it myself out of fear of having my must horrid secret revealed and destroying my family.

Even when I read through the obits I've kept of all my friends, only ONE indicated he died of AIDS.  And that was only because memorial donations could be sent to our newly formed AIDS Task Force.  All the others died of all sorts of cancers and died after a "brief" illness. 

[Miss Philicia]

I recall you saying you got someone pregnant. However, that doesn't necessarily mean that a child was the result... abortion, miscarriage.

[wolfter]

I recall you saying you got someone pregnant. However, that doesn't necessarily mean that a child was the result... abortion, miscarriage.

ABORTION in a Republican, Bible Belt family....SHUDDER!!!!!!  That option was never even hinted at.

[Miss Philicia]

ABORTION in a Republican, Bible Belt family....SHUDDER!!!!!!  That option was never even hinted at.

Surely that's no worse than "My deviant, sodomite Daddy has AIDS" now is it?

[wolfter]

Surely that's no worse than "My deviant, sodomite Daddy has AIDS" now is it?

A while ago, that might have pissed me off.....now I see the humor in it.

But seriously, conservative communities didn't have access to information if they were only provided news from conservative sources.  Perhaps there was more on TV, but I don't seem to recall it being a focus in our rural area until it was too late.

Kinda like today's meningitis outbreak in NYC, doesn't appear to be affecting faggots in our parts....YET.

[Ann]

Ann, I OH SO wish I was a grandpa.  I've made references indicating that it's time for my son to at least be irresponsible if he's not going to get married and start a family.  But not a gpa yet.  I guess that's my continued punishment.

Oops Wolfie, I was obviously thingking of someone else. Sorry! All you gayboys look alike.

[Jeff G]

Oops Wolfie, I was obviously thingking of someone else. Sorry! All you gayboys look alike.

Take that back !  .

[wolfter]

Oops Wolfie, I was obviously thingking of someone else. Sorry! All you gayboys look alike.

I'll forgive you since you called me a gayboy instead of an old queer.   

Willy and Mike are both grandpas, not sure of any others.  I certainly would have expected to be one by now also, but I guess my son learned responsible behavior some where along the way.  I'm sure he was aware what Bill and I paid out each month in child support for our 4 children so that might have scared him....lol

[aztecan]

Now Wolfie,

I know you wear the label of Tired Old Queen with pride.

I do! 

HUGGLES,

Mark

(Who is still only 27.5 years positive, officially.)

[davidrosspatient]

Hi All...in March 2013 [13th] I will have been diagnosed for 30 years as well.... Blood taken in ‘83 for the LAMS cohort was confirmed 'highly reactive' when the first HIV antibody tests came out, however my Dr in Las Vegas at the time said I had GRIDS based on my CD4 count and over lack of health [ thrush, wasting, loss of more than 10% mass, swollen lymph glands, myositis,etc].... this was later confirmed via LAMS ’85 from blood samples they had frozen and I went on to be part of Jay Levy's long termer study, same with David Ho, Oren Cohen and the NIH. Was on the original AZT trial [ U of M Fischel et al], but dropped off due to side effects and only went back on ARV's back in 2005...and thriving....Great reading all your stories and Nice to know that although I am now living in Africa, I am connected to people like me.

[Fisher]

Likely 28. Very fortunate. I thinks there's more around of us than most may think.

[allin]

Hi Mitch777, Mike here. I've been on meds for 25years plus. I was informed by Hospital personnel, of tainted Blood supply donations, way back in 1978, but didn't start treatment 'til 1988, after a surgeon stuck himself during my knee replacement. I waited 10 years to start, but figured the odds were against me that I wasn't Poz, while living those 10 years, as if i was prob. positive. I started 'cuz the drugs got more reliable, less side effects. So now, I'm in my 60's and walking & talking!

[mitch777]

hey allin!

wecome to the forums!

i am continually amazed to hear from LTS on this site.

we are ALL a very unique group.
there as so many issues that tie us together..., and also..., be accepting of the different ways we all cope with what matters in our lives.

PS- the number of views of this thread always puts a smile on my face.
i believe that this thread represents hope.
hope for not just the LTS, but also hope and much more for those newly diagnosed.
 

[Joe K]

I begin my 29th year poz in March.  When I hit 60, it will be 30 years, or half my life neg and half my life poz.  Strangely the poz part has been the best.

Joe

[em]

I remember being in the military in 1984
they did a blood test,

I still have the scars
the corman was shaking like leaf on a tree
should have been a tattoo artist
he did quite the number on my arm

I had thought they were just trying to flush out the gays in the military stupid me thought never trust those in charge they never tell the truth

as far as I know that was the first time the test for HIV was used
then 5 years later honerable discharge in hand two complete military physicals
both said I was just fine and have a great life

I gave blood it came back positive for HIV

O ya there were at least a hundred other guys who had packed up there bags and walked to the parking lot to except admin dischages for being gay

I wonder if any of them are still alive

sorry just wanted to ad some experience to the thirty year story

1984 was 29 years ago is close to thirty right

[PozJimC]

I am also ex-military.  I did not test poz until 1993.  I got out of the military due to a NIS agent who started an investigation on the ship I was on.  I did get an honorable discharge.  I would like to talk with you more about your experiences and how your life and you are today.  You can e-mail me at the address attached to my profile.
Thanks, Jim

[denb45]

@ PozJimC and em   welcome,  I'm also ex-military tested POZ+ in 87, but was already out of the service after 2 tours of duty with an EAOS in 85

I have 2 honorable discharges, but in todays world they don't mean much, however was able to use them 25 yrs. ago to land a law enforcement job for 5 yrs. and then worked for an Armored car company and retired out with a pension

nice to meet ya both, there aren't many of us around, and YES, I very much alive and doing well 


HUGS

DEN 

[etherize]

It'll be 31 years for me this year.

I didn't realize I was positive until 1995, when I got PCP and my first HIV test.  Through a process of deduction, I realized I was infected in 1982.

[Jeff G]

Congrats on the long haul ... unfortunately due to the economy and thanks to better meds we are out of toasters . You still have bragging rights and a pass to be grumpy with the folks in just tested poz though , that's something at least .

[Miss Philicia]

I think I got AIDS from frottage so that means I've been infected since 1977, or 36 years.

[denb45]

I think I got AIDS from frottage so that means I've been infected since 1977, or 36 years.

Yeah right  so that would mean you got teh AIDS when you were 10 or 13 yrs. old 

NOT 

HUGS

DEN 

[mitch777]

Yeah right  so that would mean you got teh AIDS when you were 10 or 13 yrs. old 

NOT 

HUGS

DEN 

Or......
Did you just catch her lying about her age???

[Miss Philicia]

Or......
Did you just catch her lying about her age???

feel better, now post yours you old troll

[mitch777]

feel better, now post yours you old troll

i would be most happy to post my licence (limited shot w/dob).
so....
you think you were infected at age 12?
this is LOL or very very sad.

ps- what happened to your hair?

[Miss Philicia]

ps- what happened to your hair?

The lady at the DMV made me remove my chartreuse wig.

[Dar58]

My husband and I tested pos in 1990, he was dieing from multiple infections and my system was down pretty far, as far as we could figure we were infected at the latest in 1984 so I'll probably be at 30 yrs in 2014. I've only met one other long term survivor from way back then. Glad to know others made it too

[mitch777]

My husband and I tested pos in 1990, he was dieing from multiple infections and my system was down pretty far, as far as we could figure we were infected at the latest in 1984 so I'll probably be at 30 yrs in 2014. I've only met one other long term survivor from way back then. Glad to know others made it too

I'm glad to see YOU made it too!!!
Welcome!

[Dar58]

It just that I never hear people speak with confidence that they have been poz for so long.
I remember the disease hitting me like a club over my head for the first several months. Total fatigue and fevers. And, of coarse thinking that the grim reaper was just around the corner.
The life saving meds became available just in time as my viral load suddenly went through the roof.
Since then, everthing has been just peaches and cream. ha.
So, should I have concern about being turned down for ssdi?
My stats look good.
Viral load undetectable, t-cells have remained in the 600's, still always feel like crap and can no longer focus.
I have not had the physical troubles that many of you have had to face. (yet??)
Sorry about rambling on. (I am originally from Minnesota and part of the Rose Niland in me seems to popping up with more frequency lately.)
[/quote]

Mitch I have been very lucky too, not many infections or too many side affects from meds, my system has never rebound as high as yours though, highest was cd4 count of 400, but the feeling like crap even with undet viral load is usually the fatigue from the meds, that's what gets me a lot. If this is your first time trying for disability they always turn ya down on the first try, I had to explain to them that the fatigue and other intermittent affects made it impossible to KEEP a job. I wish you luck And thanks for the welcome

[mitch777]

ya, i'm trying on that ssdi hurdle.
it gets very tiring and frustating.

i hope we will hear more from you.

[wolfter]

One of my nephews just completed a 4 year stint in the Navy and I was fortunate enough to spend yesterday evening with him.  As I was enjoying the evening, it dawned on me that I was younger than he is now when I was diagnosed.  I am not sure where that internal strength came from to survive so long. 

I think a morbid sense of humor helped a lot.  At 24, I was in the hospital with a beautiful shade of orange as my organs were shutting down.  I was in and out of lucidness and I came to and had some strange person standing over me, speaking a foreign language. 

I ordered him out of my room since I'm not Catholic and wasn't ready for last rites.  I think I survived to prove my point.   

[Dar58]

lol Wolfter when I had surgery for cancer my docs were surprised I did so well and recooped so fast. One of them said it was because I laughed so much. And yes I have a knack for dark humor as well. I even put a little xmas light under the sheet and lit it when she came in and asked her if she forgot something inside me lol. Humor is great medicine

[mitch777]

lol Wolfter when I had surgery for cancer my docs were surprised I did so well and recooped so fast. One of them said it was because I laughed so much. And yes I have a knack for dark humor as well. I even put a little xmas light under the sheet and lit it when she came in and asked her if she forgot something inside me lol. Humor is great medicine

LOL!
Did you "plan" this ahead of time or do you normally bring xmas lights with you to the hospital?

[wolfter]

My husband and I tested pos in 1990, he was dieing from multiple infections and my system was down pretty far, as far as we could figure we were infected at the latest in 1984 so I'll probably be at 30 yrs in 2014. I've only met one other long term survivor from way back then. Glad to know others made it too

I apologize, I missed this being your first post and forgot to give you a proper welcome.

welcome!!!!  

Wolfie

[atxpozguy]

I been HIV POZ since February 1983, passed into AIDS in 2001 and 30 years later, I am still alive because of the faith I have in GOD, numerous drug trials, to many pills to count.  Today, I am suffering from Cardiac issues from a stroke, shingles outbreak, wasting (107lbs) and very little support mechanisms in place to fully recover, but still strive to out to live as long as possible.

[mitch777]

I been HIV POZ since February 1983, passed into AIDS in 2001 and 30 years later, I am still alive because of the faith I have in GOD, numerous drug trials, to many pills to count.  Today, I am suffering from Cardiac issues from a stroke, shingles outbreak, wasting (107lbs) and very little support mechanisms in place to fully recover, but still strive to out to live as long as possible.

hi atx,
sorry to hear you have been having such a rough time.
i hope your doctors are on top of things.
how long ago was your stroke?
shingles and 107 lbs. to boot.
ugh!
my heart goes out to you.
keep up the positive attitude and i hope to hear more from you for a long time to come!

[jm1953]

I'm around 27 years poz.  Congrats on your 30 year mark.  Seems you are still doing well and having a fairly normal life.  I went on disability in 1999 and it's been kind of a steady decline since then.  But still hanging in there, but for some of us, it gets to a point whether or not just going to the doctor, having procedures performed, and dealing with constant pain is worth it.  But in contrast, I do gain alot of hope from friends of mine with cancer who are so amazingly brave and positive.

Congrats again.  And remember, this is a very individual disease so one experience does not dictate that for another.

Take care

[fscerra]

I tested positive in 1989 ...... 24 years ....... health has been good but now is starting to deteriorate

[mitch777]

welcome fscerra!
wow, 2 first time posters of LTS in the same day!
hope to get to know you better as well!
m.

[fscerra]

Thanks Mitch777 ....... great to hear from you ...... spring is coming to New England .......but Autumn is my favorite season ..... so glad to be a LTS .......

[Habersham]

I consider myself to positive for 29 years.

My partner was hospitalized for Viral Pneumonia in 1984 and tested poz at that time.

No one knew at that time what unsafe sex was. We had been practicing it unaware for a year before that and for a year afterwords. He died about two years later.

I first tested HIV+ in 1987 but believe I had been positive long before.

I estimate my infection to 1984 or before. Right now I am 53 and estimate I have been positive for at least years right now.

There are more of us around than you would think.

On more than one occasion when filling out forms at a Drs office they think I have messed up my dates and I have to laugh.   

[maxsa]

OH,my god......30 years!!!!!! I am from China, MY doctors told me I will die 10 years later

[Ann]

OH,my god......30 years!!!!!! I am from China, MY doctors told me I will die 10 years later

Maxsa, I understand that you meant well, but as someone recently diagnosed you are NOT permitted to post in the Long Term Survivors forum. This forum is ONLY for people diagnosed before 1996.

Please do not post in this section of the forums again. You may read the threads here, but do not post. Thank you for your cooperation.

Ann

[LetsKickASS]

I seroconverted in 1983 so that make 2013 thirty years. I only figured it out in hindsight. I was dating a hunky 6' 4" guy with whom I swapped bodily fluids who suddenly lost 30 pounds in two months then died. (I didn't know what from then. He just said he has "picked up some thing while traveling.) It was while I was dating him that was sick with the symptoms of seroconverstion. I had fevers, enlarged nodes, exhaustion, headaches, etc. It is very clear to me that that was when I seroconverted. I tested in 1986. So I've been H.I.V.-positive for thirty years now. Have AIDS since 1993. But I'm alive!! (And I'm 54-years-old now.)

 

[mitch777]

I seroconverted in 1983 so that make 2013 thirty years. I only figured it out in hindsight. I was dating a hunky 6' 4" guy with whom I swapped bodily fluids who suddenly lost 30 pounds in two months then died. (I didn't know what from then. He just said he has "picked up some thing while traveling.) It was while I was dating him that was sick with the symptoms of seroconverstion. I had fevers, enlarged nodes, exhaustion, headaches, etc. It is very clear to me that that was when I seroconverted. I tested in 1986. So I've been H.I.V.-positive for thirty years now. Have AIDS since 1993. But I'm alive!! (And I'm 54-years-old now.)

 

Wow.
Thank you for joining us!
Curious how long ago you figured this out.
(I am nosey so please forgive my question.)
How are you doing now?
(again... nosey. .)
And welcome.
m.

[castar]

31 years for me.
Born 1981-Blood transfusion
Found out 1995-14 years old. T cells <100
Don't wish it on anyone 😞

[weasel]

     1982 .

            Not a happy affair  . 

         I denied  it for years 

                                                    Weasel 

[aztecan]

I actually didn't test positive until 1985.

But, I contracted viral meningitis in 1980 from an unknown source, shortly after spending time with a delightful young man who had recently fell ill with what he described with the flu.

Except it was early summer.

My first doctor thinks I was probably infected at that time, but, of course, no proof.

Even so, at least I have 28 years to which I can attest.

HUGS,

Mark

[mitch777]

I actually didn't test positive until 1985.

But, I contracted viral meningitis in 1980 from an unknown source, shortly after spending time with a delightful young man who had recently fell ill with what he described with the flu.

Except it was early summer.

My first doctor thinks I was probably infected at that time, but, of course, no proof.

Even so, at least I have 28 years to which I can attest.

HUGS,

Mark

This is pretty suspicious. Sounds most likely that it was 1980. There were no tests available prior to 1985 was there?

[wolfter]

I didn't think the test was available until 86 with it being routinely available until 87.  But this again, this old AIDS brain doesn't quite function normally.

I'll never be sure as I don't recall ever going through seroconversion.  The only time I remember ever being deathly sick was my Junior year of high school...ikes.  But I believe it was a pretty slutty night on my birthday during college.  School had ended for the summer and I turned 21...time to party....and regret.

Edited for clarification as I rec'd a message with the following.

http://kff.org/hivaids/fact-sheet/hiv-testing-in-the-united-states/

1985:   First test for HIV licensed (ELISA)
1987:   First Western Blot blood test kit
1992:   First rapid test
1994:   First oral fluid test
1996:   First home and urine tests
2002:   First rapid test using finger prick

[fscerra]

Celebrating my 23rd anniversary this month ..... diagnosed  CDC defined aids for 2 years now .... latest t cell count 96 ..... VL 300 .... previous count t cell 104 .... VL undetectable .... tests repeated yesterday to see if there has been any improvement or if a regimen change is in order .... had a URI that was near to becoming pneumonia .... on antibiotics for that .... feeling better today .... looking forward to the next 23 years .....

[heartforyou]

Officially 1987, but from my T count at that time and the intensive care stay with an unknown virus in 1983, it happened in 1983....

So I have 30 years on my back as well...


xxxx

[guitargal]

Hey everyone,
I do not write here much and I would like to start checking in more and become friends.

I am pos probably 28 years..
Most likely exposed in 1985 although I remember I had a terrible flu in July 1986

Found out in 1992 and was put on AZT right away. I also got ssi in 1993!
 i think i had  cd4 of 210
guess the AZT didn't work as  I kept dropping  160 then 90 , 65 , 33 , 13..

some OI's and pneumonia
I prayed for the smart scientists out there working on new meds. I remember saying to my self, the PI's are coming.. just hang on for the new drugs..
I made it!

Got better in 1998 with PI's I was one of the first in my state to take them.
Had a new lease on life so to speak and a  good life ,considering, a single mom on $600 a month with part time work here and there..

Good docs,  bad docs,  incompetent arrogant docs , trying to find an attorney as we speak but that is another thread…

My son born in 1990 is negative so . ? Even breast fed him a year. I didn't' know I was pos.. i have been blessed to have every minute i have had with him and what a great man he is now!

HEP C+ (will do the new treatment this year)
HIV UD VL  900 something cd4

taken all the meds..(except some of the newer ones…)
currently i suffer extreme severe full body pain undiagnosed for 2+ years now no one knows… i say IRIS?

summer 2011 bad leg pain cramps twitches weakness..a@% Hole doc recommended i stop meds and see if leg pain stops..idiot me did what he said..
well legs got worse and when restarted meds in fall of 2011 after 3 months off ..a reaction happened and left me bed ridden crying and house bound in extreme  pain thinking i was a goner  and no diagnosis or treatment or pain management..FU@%#rs    and ready to smack the docs!
Still here i AM! I have improved this past year and learning to live with this new me.. and have pain meds now but very limited on chores and daily errands. sucks i was a go go go person who just got stopped in her tracks.

all my best LTS we rock!

[Theyer]

Welcome Guitargal ,  Sorry about the things you are struggling with and congrats on all your many successes.

Many off us here have pain problems. I am beginning to think there is quite a difference how doctors treat pain. I am a UK resident and have a Pain controll Doctor, and am treated by a combination off drugs.

I do wonder wether the explosion off pain control drug abuse has now skewed all US Doctors approach to pain .

Look forward to your future posts

Michael

[wolfter]

welcome aboard guitargirl.  It seems almost surreal that we've struggled and survived despite the bleak prognosis.  Hope you stick around and get to know our dysfunctional family.   

wolfie

[Theyer]

I didn't think the test was available until 86 with it being routinely available until 87.  But this again, this old AIDS brain doesn't quite function normally.

I'll never be sure as I don't recall ever going through seroconversion.  The only time I remember ever being deathly sick was my Junior year of high school...ikes.  But I believe it was a pretty slutty night on my birthday during college.  School had ended for the summer and I turned 21...time to party....and regret.

Edited for clarification as I rec'd a message with the following.

http://kff.org/hivaids/fact-sheet/hiv-testing-in-the-united-states/

pretty slutty night translates to had a graet time had no idea could feel so free , I bet Greg thats what you thought for a while then you layered the crap on and the freedom feeling went .

1985:   First test for HIV licensed (ELISA)
1987:   First Western Blot blood test kit
1992:   First rapid test
1994:   First oral fluid test
1996:   First home and urine tests
2002:   First rapid test using finger prick

[wolfter]

  Yeah, I never considered myself gay; I simply loved having sex with men.    Kinda like the way royalty has always dealt with it.

[Jeff G]

  Yeah, I never considered myself gay; I simply loved having sex with men.    Kinda like the way royalty has always dealt with it.

So you're finally admitting you are a queen . 

[wolfter]

So you're finally admitting you are a queen . 

Bill sometimes referred to me as princess whenever I pouted about wanting to waste money on clothes.    In those days, I could have shopped everyday if allowed.