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Author Topic: Recently diagnosed, and feel like I can beat the odds. Am I crazy to think this?  (Read 3157 times)

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Offline NY2011

  • Member
  • Posts: 141
Does anyone else feel that when they are reading about common HIV-related problems, for some reason, that they may somehow be able to beat the odds? I find myself searching for "clues" that may differentiate my experience or adherance from other people's, such as if they were meth users, are coinfected with HCV, if they waited a long time before initiating drug therapy, etc.   I find myself thinking that it's that "other thing" and not the HIV that may be causing their health problem.  I find myself doing this often, with everything that I read about HIV. I also find myself taking false comfort in thinking that because I initiated drug therapy so early, that I may have done something preventative, to avoid some of the known problems associated with the disease, yet there's nothing clinically supporting that. 
 
I guess it's only natural to hope that treatment and therapy is going to radically change within this decade. Is this blind optimism?  Has this been the way it's been for decades already?

 Have some of you experienced having a feeling that you had your HIV completely in check, only to be blindsided by some medical issue that resulted in the realization that you may not be beating the odds, after all? 

I'm curious to hear from both long term survivors and from people who have been living with this for a few years, and if they, too, have or had this belief that they were going to be the exception,  while living healthy and keeping their cd4 numbers high, and that they would just have to stick it out for a few years on the drugs until a viable cure comes along, albeit functional or therapeutic. 

Just looking for some empirical data from people whose experience has given them the ability to put this all into perspective.   

Thank you for reading, and I look forward to your responses. 
« Last Edit: February 24, 2012, 12:53:08 AM by NY2011 »
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud
11/25/2014 - CD4=1,335 VL= ud

Offline wolfter

  • Member
  • Posts: 4,746
A lot of us LTS will have different responses as we didn't have the meds to assist with our journey.  I have always felt attitude was an important aspect of beating this virus.  I had a doctor who declared that I was in denial because I refused to accept this virus would kill me.  I continued my life as if I was going to live a long time.  I finished my education and worked and planned on retirement.  So yeah, a bit of denial probably worked for me.  It would be great to discover that one common denominator that allowed so few of to achieve LTS while we watched so many succumb.

There is no reason to think you won't enjoy a long life with all the therapies now available.  Beating the "odds" is now the norm rather than the exception.  Now, start planning your future and work towards everything you ever wished to accomplish. 

Take care and best wishes.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline bufguy

  • Member
  • Posts: 161
I tested poz almost 4 years ago  and started meds right away with relatively good numbers. My doctor encouraged me to start treatment as he fet I was educated about the virus and treatments and that I would stay adherent. I, like you felt I had to do something to beat it, and meds turned out to be a great solution for me.I feel so fortunate to have had virtually no side effects and have stayed extremely healthy. The diagnosis pushed me to take very good care of myself....seeing a doctor every 4 months keeps me honest also....I rarely think about my condition from a well being stadpoint.
These forums are a venue for people to share issue, solve problems and seek advice. What doesn't always get seen is that many people have few if any problems.
I have no doubt I will live a long healthy life, and hopefully along the way be part of some sort of cure.
Be well
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline buginme2

  • Member
  • Posts: 3,295
Does anyone else feel that ..............you may somehow be able to beat the odds?

I beleive the odds are that you will live almost a normal life span, being newly diagnosed, and starting treatment early.  I beleive those are the odds.  What exactly is it you are trying to beat?


I guess it's only natural to hope that treatment and therapy is going to radically change within this decade. Is this blind optimism?


Maybe, I don't know.  There are a few things in early research that could be a pretty big deal.  Will they materialize in the next decade? Who knows.

I'm curious to hear from both long term survivors and from people who have been living with this for a few years, and if they, too, have or had this belief that they were going to be the exception


No.  However, I did try and learn as much not only about HIV itself but of the history as well.  For me, that helped me come to terms with some of the extistential questions that you are asking (that no one else can really answer). 

Don't be fancy, just get dancey

Offline mewithu

  • Member
  • Posts: 160
  • mewithu
  I think you have a great attitude about all this, and that you have to hold on to a good attitude to help you go through all meds and changes in your life now. If you have a problem don't freak out with being tired or get sick sometimes because of the meds or other things that may happen over time. Be strong with your attitude and exersize so you can hold your body in the shape you want.

Jerry
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline NY2011

  • Member
  • Posts: 141
Wolfie, bug, bufguy and Jerry; thanks for sharing your thoughts with me.  I'm glad to hear that some of you haven't dealt with many health problems, and that others of you had the wherewithall to overcome the ones you've been confroted with.  To answer your question, Buginme, by "beating the odds", I was referring to being able to go through life, quite frankly, asymptomatic.  I had a shaky start with the meds.  My body reacted adversely to the first regimen, which involved a PI.  My liver enzymes and lipid numbers shot up, which was pretty scary for me to deal with, since I've never had a medical issue in my life prior to this.  Once we dropped the PI and switched to sustiva, and after I got past a rash that it caused, things normalized for me.  Liver enzymes are back in range, kidney function is in range, and lipid panel is normal again.  I also feel better.  I feel that as long as I stay on top of lab results, that I will get back to the feeling of being that healthy guy that I was before all of this.  I guess what I miss most is taking my great health for granted.  Now, as you well know, it takes an effort to make sure I stay healthy, but I rise to the challenge, and will make sure that I stay ahead of the curve.  My biggest fear is the possibility of cellular mutations causing cancer(s) to develop, and that even if I live another 25-30 years, that my 50's and 60's would be a shit-show.  I think alot of that was influenced by what I was going through with due to the PI. but I'm beginning to think less about those things, and focusing on the things I do have control over, such as diet, exercise, and regular check-ups.   

Thanks again.

10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud
11/25/2014 - CD4=1,335 VL= ud

Offline SetList

  • Member
  • Posts: 10
  • Year One: Dealing
I understand your question.  You want to know if there's something you're missing as you allow yourself to believe the facts that the meds work and you can live a long, healthy life.  I'm second guessing it, too but logically can't think of reasons not to believe in this. 

Like you I was diagnosed recently and have strong numbers (1050 CD4, VL 9000).  I believe I was seroconverted in August and was diagnosed in January.  I'm debating between Truvda/Atripla/Complera... planning to start in a few weeks.  And perhaps my biggest concern for my health is the adverse effects of these drugs over time.  I'm the type who doesn't even like to eat processed foods or take aspirin, but I'm not a fool and know the cure is NOT worse than the disease. 

Offline mecch

  • Member
  • Posts: 12,169
  • red pill? or blue pill?
You can't know today if 30 years from now "it" will be a shit show.  Listen to the experts, then, who are not predicting this.

You want to be special but you are not special. 


You are just part of a demographic of people these days who seroconvert and know it and start meds "early" and it will be a wait and see for all of this demographic what the future will bring.

If you are feeling healthy now I hope you can find ways to dampen the anxiety about the future and the regret about the past. Thats the feeling I get from your paragraphs.  Not enough "now". 

The diagnosis was a bit ago, now, so maybe its time to put "HIV has crapped up my life forever" is a pretty tight box and put it in a dark corner.  Especially since the drugs work, your body is fine, etc etc etc.  I'm not saying its easy.
« Last Edit: February 25, 2012, 03:20:43 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline TexasPOZ

  • Member
  • Posts: 46
I believe there's going to be a cure for this in our lifetime. But for the time being my meds cause me no side effects, and I haven't been sick from HIV a single day in my life. Maybe I'm just lucky, because I used meth, and I don't eat all that healthy or exercise enough. I don't know what beating the odds means in terms of this disease. The odds are on side. We have good meds and new ones on the way. HIV is not a death sentence anymore. I hope you continue having a good attitude and wish you well.

Offline sshortguy1

  • Member
  • Posts: 118
i just read about the idea about beating the odds but to be honest hiv will get worse eventually without medication as ive read trust me i've been reading about it almost daily since last nov haven't gotten sick or a cold in who knows how long, but in reality 
everybody immune system reacts diffrently than others to some they react quickly to some they don't could take yrs as of mine went with a friend to the case worker he had gotten myself tested didn't even think of ever getting it but gotten tested every 6 monthes or so went a yr and a half without till i went with him and ended up being poz no symptoms or anything gotten the blood work done in dec gotten it back in jan cd level was 223 with a vl of 250 k as from reading to 1 that applies to doesn't mean it'll apply top them as well gotten on atripla in jan even though i feel i don't need it but im not going to stop taking them its not worth taking the chance


 


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