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Peter
Unregistered

"The Lazarus Syndrome"
      #2438 - 04/04/00 09:43 PM

Hi,

Currently, I'm doing a story on the phenomenon, labelled the 'Lazarus Syndrome', that many people living with HIV go through when they add protease inhibitors to their drug regimens.

If you have experienced this phenomenon, I would really like to hear from you.

In particular, I am looking at the psychological effects of this phenomenon. How does using protease inhibitors influence the way you see yourself, your life, and your role in the community?

This question may seem too opened-ended or even nebulous, but I'm interested in your story, and I feel that a general question will allow me to better understand your personal perspective.

In case I'm wrong, here are a couple of other questions: What did adding these drugs do to the way you see the world? What did you go through when you started taking protease inhibitors?

Thanks in advance for your insight, and feel free to email me with any comments or questions.

Peter




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JP.
Unregistered

Re: "The Lazarus Syndrome" new
      #2440 - 04/04/00 09:44 PM

Perhaps you can explain more about what the 'Lazarus Syndrome' is. We have been inundated by so many effects, syndroms, buzz words, etc. that one more has little meaning.

For example - I have heard and read about Buffalo hump and crix belly, but no one ever said what they were, apparently I am out of touch because I do not live and operate in the middle of the AIDS community.

Tell me what you are looking for so I know if I can help you out.
JP




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nancilee
Unregistered

Re: "The Lazarus Syndrome" new
      #2443 - 04/04/00 09:45 PM

yeah, me too, what do you mean by the lazarus syndrome. i started taking pi's along with my retro virus drugs and feared them something terrible. i spent so much time and emotion dreading the day i would start like i would be so dreadfully sick but as it turned out it was the AZT that put me in the hospital until they figured it out and the Crixovan is a breeze. ok, the food and time and stuff is a bit of bore but not that big of a deal.

the only reaction i can really say is i feel nervous and grouchy and anxious about 45 min. after taking the afternoon ones. it clears up later when i put some sugar or something in my system, it seems.

ok, mentally? yeah, it is a constant reminder that there is something dreadfully wrong with me yet i feel and look as fine as can be. so its a 3 time a day slap in the face to reality.

but what do you really want to know? god i hope i dont get that hump thing and my belly was never small, adding to it would not be a good thing! but what the hell. there are worse things to worry about.



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J.P.
Unregistered

Re: "The Lazarus Syndrome" new
      #2445 - 04/04/00 09:46 PM

Hello- I hesitate to even relply cause this is an old subject and the questions are too vauge (excuse my spelling)

the Lazarus syndrome to the other jp is the coming back from the dead. The protease inhibiter intervention was the first hope for many but the ultimate salvage therapy at the time. People whom had zero t counts and had sold the life insurance to take on trip to the caman islands before they died found themselfs not dying.

your questions peter:\

I didn't experience the intensity that other did as i was med therapy free holding out for a treatment option that wouldn't kill me , hoping i could maintain with out any. the other shoe dropped and i found myself with 3 t cells and a half mill or more viral load.
I started the med reigiem and it didn't work for me initially. 9 months of therapy didn't give me the promiced undetectable level in 2 weeks the pharmisutical companies tourted. i went of meds for a year and them crashed again only to go on a new set of meds. these worked more effectivly but not like other's sucess stories. Having been in hospice now for a second time i went to a few more funerals however other stopped dying. I was the first to walk out of our hospice. 9 others have followed in the last 2 years.
How does it feel to "come back from the dead" you ask.
You can't caputre it in words but good luck to you trying.
First
one has to know what it feel like to know your going to die in 6 months or less. And not a pretty death. Wasting, suffering, fever, fatigue, vomiting and diarrea till your 80 lbs and being spoon fed mush and even a tv in an unwelcome intrution on your private peace making state of being. Dependent on someone to wipe your butt. Then the mortality of being human sets in and one tries to find meaning and peace. A power greater, God, Goddess , Creater call it what you will. the 5 stages of grief pass through you this whole time. In a daze of mental abiration distorted from disease and sideeffects of toxic cures. Demetia kicks in. I really am going to die i think and it real and its me!!! Well after the denial and shock and anger and guilt and confusion pass I ask myself WHY? Aids , homeless, war, rape, predujuse and all the horrors of life dark disparing. What kind of creater makes this ( of course he/she doesn't make it but allows it) and hoefully a peace find one and an aceptance if not forgiveness at these/ this state comes.
The religios charlitans tring to save your "soul" at the last minute like a game show running up on the buzzer is the second from the last insult.
The last insult is the family and friends who weren't there for you in life crowded in your room mute and feeling stupid at the awkward feebleness of their awakening to this reality.

Then Arives the Protease inhibitor.

False Alarm . I'm not coming Home yet is the sigh of relief that only someone who has seen the nearing of death can understand in its experience. There is disbelif and distrust and fear that I will have to go though it again. Is THIS real or a false hope i wonder.Emotions I didn't expect to feel till I was 85 went through me and physical experiece and suffering i never immagined. Not necessarily as intense as induring as I did cross that like of admiting being beat. Releif, joy hope wonder appreciation. Life looks a little different to day. How long i don't know. Other (non aids) people have expereinced and other near death people. I understand now. I know myself better. I know my belief better. I know my concenpt of my creater better. I know love better. Those whom didn't make it and thoes who where there for me. the hospice staff. Volunteers. Nurses and doctors. Other patients whom became my extended family. I can love better now. Not nearly as well as i perhaps "should" though but life is growing.
11+ years of this i still get sick and depressed and in the hole but i do have 'hope after hope' ran out and 'time after time' ran out is what i have to draw from. That is how the lazarus syndrome feels to me.
Others have felt differnt and more or less.
It's personal.
I hope I helped you.
Feel free to e-Mail me.



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Windwalker911
Unregistered

Re: "The Lazarus Syndrome" new
      #29403 - 03/05/02 09:57 PM

Peter, first I'd like to know what the story is for. Are you a journalist?
If I understand the "Lazurus" implication correctly, you are referring to people who are very ill 'rising from the dead' so to speak.
Well, here's my story. In February 2001, I tested negative for HIV and DID NOT have any sexual, needle or any other type of body fluid contact between that test and the date I was diagnosed as positive in August 2002. Prior to the Feb. test, I had tested every six months for several years...all with negative results. Don't let anyone tell you that seroconversion always happens within six months because this is not true in all cases, as it was not true in my case.
I went to the hsopital emergency room in August with a 104 degree fever, respiratory difficulties, and dramatically swolen lymph nodes. When my personal doc asked my permission to run another HIV test, I agreed, certain that it would be negative. I was admitted to the hospital with a diagnosis of pneumonia and was still there - and 26 pounds lighter - when my test came back positive. I was totally shocked, even more so when the doctor ran further tests and revealed that my T-cell count was 6 and my VL was 750,000. At that point, sputum cultures determined that my pneumonia was PCP, the OI that most often destroys AIDS patients. In essence, I was incredibly sick and found out that I not only was HIV+, but also had AIDS.
I was finally released from the hospital and struggled to continue working and caring for my children until October 2001, when my children and I moved to Virginia to stay with my parents. I knew I could no longer take care of myself or the kids and basically I came up here to die. I had already given up, planned my funeral (right down to the music)and was ready to go.
About a month after I got here, I found an infectious disease specialist. Trizivir, the med I was started on, was making me desperately anemic and I never knew until I started seeing this doc. She changed my meds, made some suggestions that I followed and monitored me every two weeks for the first two months, then every month.
At my last doctor visit in Feb, my T-cell count was 139 and my VL was undetectable. When the doc said those words, my first conscious thought was "I'm going to get to see my kids graduate". I cannot possibly find the words to describe what I felt or how a tremendous burden was lifted from me immediately.
I have gained up to 135 pounds (was 103 in October and 5'9"), I feel great most days and am returning to work in the near future. Once I decided to get busy living instead of staying so busy dying, life improved dramatically. Adhering to my med regimen and following the suggestions of my doc did some of the job, but I really believe that God made it happen. And it feels wonderful.
Hope this helps you.
Windwalker



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