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Author Topic: Healthy with HIV?  (Read 5190 times)

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Offline Inchlingblue

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Healthy with HIV?
« on: February 15, 2009, 02:31:45 PM »
It seems there are so many different "forms" that having HIV can take, probably as many as there are individuals with HIV. In the dark, old days, the odds were against us and most people with HIV eventually succumbed, became sick, many many died. That dynamic began to change with the advent of HAART. It's no longer a death sentence, and hasn't been since HAART. What I'm curious about is hearing from people who basically are living regular, healthy lives, albeit with HIV. People who have access to their meds (no insurance issues, etc), are adherent, have never gotten sick and have had no significant side effects to speak of from the meds. People who, other than the fact that they have to get their blood monitored several times a year and have to take ARV medications, no one would ever even know that they have HIV unless they wanted to disclose it themselves. Are there many of these people out there, I wonder? I don't want to sound naive, I really have no sense of this and, as someone diagnosed five months ago and still healthy and not on meds yet, I'm curious to know. Thanks ;)

Offline Ithaca_Nights

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Re: Healthy with HIV?
« Reply #1 on: February 15, 2009, 03:24:22 PM »
Hi,
I am one of the people that you describe in your post.  I tested hiv + in 1988 and did not have any hiv related problems except sinus problems.  My numbers were stable until about 2 and a half years ago.  Then the decision was made to start meds.  I was put on Atripla and my numbers are doing very well.  The only problems I have at the time being is fatigue on and off. 
I have known a few others like myself, but have known far more who did not  do well at all.  I lost many friends in the early days and a few since HAART.  The meds we have today are wonderful, but there are still folks who do not do well.
You have a very great chance of staying healthy in this day and age.
Cheers! Dan

Offline Inchlingblue

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Re: Healthy with HIV?
« Reply #2 on: February 15, 2009, 03:50:42 PM »
It's great to hear your story, Dan.......thanks ;)

Offline Movingon

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Re: Healthy with HIV?
« Reply #3 on: February 16, 2009, 04:54:27 AM »
hi there - i was diagnosed nearly 2 years ago and went pretty much straight on meds. I was never sick and haven't been sick since, and i would describe my life asnormal, heatlhy and sickness free (touch wood) . I was diagnosed with reasonably bad numbers and took my docs advice to start meds sooner whilst i still had some immune systme left, rather than later when it crashed out

the only didfference is that i have to watch what i eat and drink, get some excercise and bosh a few pills every day

i think alot of it is in the mind , and we just have to listen to those very clever people out there called doctors who keep telling us that we will live to old age

Offline RVinVA

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Re: Healthy with HIV?
« Reply #4 on: February 16, 2009, 08:03:38 AM »
I was diagnosed in 2004 after a routine physical. I never had been sick, but my numbers were terrible and the doctor speculated that I had been positive for years. I went on meds (Truvada/Sustiva, later Altripla) immediately, and my counts have improved significantly and still (knock on wood) no difference in my quality of life. I still work full-time, feel quite healthy and live is as "normal" as possible -- so far. This disease seems to affect each of us differently, so it's impossible to generalize.

Good health to all!

Rob

Offline racingmind

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Re: Healthy with HIV?
« Reply #5 on: February 16, 2009, 08:42:46 AM »
I am one of those people too.  I was diagnosed, my numbers were okay to start.  About a year later, I started meds (Atripla).  I have little or no side effects.  The meds are effective and took me to undetectable within a month.  I work full time and really don't think about it except when it's time to take my daily dose.  I went to therapy to help me cope with the knowledge of my status and that helped a great deal. I see my docs regularly and have not gotten sick other than an occasional common cold.  I feel very lucky.  The only thing that really bothers me is that I feel that my sex life is pretty much over.  I don't want people to know about my condition and it's easier just to not have sex than to have to disclose.  I don't trust people to keep it too themselves.  It sucks not to be a sexual being anymore, but I guess, for me, it is just a consequence of contracting the infection.
Tested Negative: 5/06
Tested Positive: 9/06 
9/06: CD4: 442 (28%) VL: +100,000
10/06: CD4: 323 (25%) VL: 243,440
11/06: CD4: 405 (28%) VL: 124,324
12/06: CD4: 450 (29%) VL: 114,600
1/07: CD4: 440 (27%) VL: 75,286
3/07: CD4: 459 (30%) VL: 44,860
5/07: CD4: 353 (24%) VL: 50,852
7/07: CD4: 437 (29%) VL: 39,475
9/07: CD4: 237 (32%) VL: 372,774
10/07: CD4: 324 (27%) VL: 115,454 
Started Atripla: 10/07
11/07: CD4: 524 (?%) VL: Undetectable!
2/08: CD4: 653 (35%) VL: undetectable
5/08: CD4: 822 (40%) VL: undetectable
8/08: CD4: 626 (35%) VL: undetectable
12/08: CD4: 619 (36%) VL: undetectable
3/09: CD4: 802 (38%) VL: undetectable
7/09: CD4: 1027 (43%) VL: not tested
10/09: CD4: 1045 (43%) VL: undetectable

Offline rick21007

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Re: Healthy with HIV?
« Reply #6 on: February 16, 2009, 01:44:23 PM »
I am on Atripla--Vl undetectible, CD4 807. I also have chronic hep. B--Atripla treats this too.  I just turned 60.  Am healthy as a horse.  (well I tripped the other day chopping wood and fell backwards  onto a rock and broke a few ribs--ouch!!)  I work full time, have a full life.  I work out at a gym, live on a horse ranch so I also ride and otherwise stay physically active.   I look around at a whole lot of hiv neg. people my age with a myriad of other health problems and/physical limitiations and wouldn't trade places with any of them---including my younger sibs.

rick 

Offline Inchlingblue

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Re: Healthy with HIV?
« Reply #7 on: February 16, 2009, 03:09:07 PM »
rcik21007, racingmind, RVinVA, movingon:

I love reading all of your individual stories, it's informative and comforting.....

Movingon: I'm curious, what meds are you on?

Thanks ;)

Offline mecch

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Re: Healthy with HIV?
« Reply #8 on: February 16, 2009, 03:48:48 PM »
Inchling, my story is in my labs, posted below.
I'll probably be one of the physically healthy with for a long time. Time will tell.
Emotionally its a roller coster
Best
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Inchlingblue

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Re: Healthy with HIV?
« Reply #9 on: February 16, 2009, 03:54:33 PM »
Thanks for the info Mecch.....one quick question:  what was the reason for reyataz/norvir switch?

Offline mecch

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Re: Healthy with HIV?
« Reply #10 on: February 16, 2009, 09:57:06 PM »
Sustiva/Truvada was great, until it wasn't. Felt the sustiva "crazies" -- a minority of takers feel. Well Reyataz was great, until it wasn't. I was itching to die for, for two weeks, and far from my ID, I switched back to Sustiva. All will be sorted out again in March, I hope, by the experts.  Best of luck to you
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Moffie65

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Re: Healthy with HIV?
« Reply #11 on: February 17, 2009, 08:39:21 AM »
This thread is disgustingly disturbing for those of us who have lived this disease in it's most gruesome.

Most of us still have very difficult side effects from both HIV and HAART, but the audience is completely tired of our reality. 

Interesting thread; considering that the science still determines that HIV is a terminal illness, and that the lifeline of medications for many on this board, especially the uninsured, is tied to the political assertiveness of those interested in keeping us alive.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline GSOgymrat

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Re: Healthy with HIV?
« Reply #12 on: February 17, 2009, 09:08:01 AM »
This thread is disgustingly disturbing for those of us who have lived this disease in it's most gruesome.

Most of us still have very difficult side effects from both HIV and HAART, but the audience is completely tired of our reality. 

Interesting thread; considering that the science still determines that HIV is a terminal illness, and that the lifeline of medications for many on this board, especially the uninsured, is tied to the political assertiveness of those interested in keeping us alive.

Point taken. However as someone who has had side effects and illness I don't mind people wanting to hear the stories of people who have not been sick. I think we need to hear everyone's story.

Offline mecch

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Re: Healthy with HIV?
« Reply #13 on: February 17, 2009, 12:39:55 PM »
This thread is disgustingly disturbing for those of us who have lived this disease in it's most gruesome.

Most of us still have very difficult side effects from both HIV and HAART, but the audience is completely tired of our reality. 

Interesting thread; considering that the science still determines that HIV is a terminal illness, and that the lifeline of medications for many on this board, especially the uninsured, is tied to the political assertiveness of those interested in keeping us alive.

NEWS FLASH:  The recently infected and closely monitored patients benefit from the years of experience in this epidemic.  Including all the dead victims and Long-term-survivors.  I don't know what audience you refer to, the ones who are bored by LTS reality - but I encourage you to always try to educate such numskulls.  However please also respect other peoples experiences in this epidemic.

NEWS FLASH:  HAART is extremely effective.  More effective than people expected.
The Next Stage of HIV Eradication: Finding the Secret Reservoirs
A Discussion With Robert Siliciano, M.D., Ph.D.
February 8, 2009
http://www.thebody.com/content/confs/croi2009/art50467.html


Maybe the thread treads heavily putting "Healthy" and "HIV" together.

Many different exeriences of people have had great results with HAART.  From LTS who were never ill, to recently infected and very ill, whatever.  People who have had great results on HAART should enjoy their "health" if they choose to call it that, enjoy their lives, aware of the delicate balance of support that keeps them that way. And not be made to feel guilty for it. Or be the source of making LTS feel disgust.

Thats my opinion.

« Last Edit: February 17, 2009, 12:44:21 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline umfowabo

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Re: Healthy with HIV?
« Reply #14 on: February 17, 2009, 01:36:13 PM »
The recently infected and closely monitored patients benefit from the years of experience in this epidemic.  Including all the dead victims and Long-term-survivors.

My sister wasn't a victim. I just wanted to say that.

Matthew

Offline rondrond

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Re: Healthy with HIV?
« Reply #15 on: February 17, 2009, 01:39:12 PM »
My sister wasn't a victim. I just wanted to say that.

Matthew

You're right. I myself am having the opportunity to living an extraordinary life as opposed to an ordinary life.

Ron~
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline komnaes

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Re: Healthy with HIV?
« Reply #16 on: February 17, 2009, 09:26:41 PM »
At this point I wouldn't call myself a newbie anymore, and though I have had just one episode of a real health issue with MRSA last year and some skin problems (common among us) I am considered "healthy". Well, "healthy" as in I am not having any major sickness yet, but I don't consider myself "healthy" as I am the host to a deadly virus.

I prefer to think of it that way to keep reminding myself that I still have a serious medical situation and even though new meds are reducing the risk of rapid death, nothing is guaranteed as far as my health is concerned.
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline mecch

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Re: Healthy with HIV?
« Reply #17 on: February 17, 2009, 11:17:14 PM »
point taken, regrets for the use of the word victim, of course I meant all the people who have died of AIDS related illnesses.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

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Re: Healthy with HIV?
« Reply #18 on: February 18, 2009, 07:31:31 AM »
Hi,

It seems there are so many different "forms" that having HIV can take, probably as many as there are individuals with HIV. In the dark, old days, the odds were against us and most people with HIV eventually succumbed, became sick, many many died. That dynamic began to change with the advent of HAART. It's no longer a death sentence, and hasn't been since HAART. What I'm curious about is hearing from people who basically are living regular, healthy lives, albeit with HIV. People who have access to their meds (no insurance issues, etc), are adherent, have never gotten sick and have had no significant side effects to speak of from the meds. People who, other than the fact that they have to get their blood monitored several times a year and have to take ARV medications, no one would ever even know that they have HIV unless they wanted to disclose it themselves. Are there many of these people out there, I wonder? I don't want to sound naive, I really have no sense of this and, as someone diagnosed five months ago and still healthy and not on meds yet, I'm curious to know. Thanks ;)

First able, the use of the word "healthy" is all relative.

In 27 months since my HIV diagnosis (and probably only a few months more since my infection), I have not had any illness that was directly linked to HIV. My tcells have not statistically declined and my VL has not increased. They both remain good, and thus I have chosen to delay HAART thus far even though I have access to it at very reasonable cost through my insurance. I am in a study about HIV controllers. It may be that I will never be on HAART if I am lucky. If the numbers stay the same, I know I won't be.

That said, I still get sick quite a bit, as I always did before HIV - I get my share of serious colds and such. I have never been a very healthy person. And recently I have been hit by 3 hernias. But again, nothing that is HIV-related.

There is no way anybody could tell that I have HIV in my blood unless I disclosed - which happens frequently as I am very open about my status.

Offline Inchlingblue

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Re: Healthy with HIV?
« Reply #19 on: February 18, 2009, 02:43:03 PM »
madbrain: it's interesting that even though you get sick "quite a bit," and did even before the HIV, that your immune system is doing such a god job at controlling HIV, kind of ironic, I guess, but GREAT@!

Offline Mike R

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Re: Healthy with HIV?
« Reply #20 on: February 18, 2009, 03:12:26 PM »
I've had a good run on the physical health side since my diagnosis in 2002.  On Atripla with no real side effects and my numbers have been great (undectable and 960 CD4).  It is the mental side for me.  I hold a high level managerial position, do well at working, excercise all that stuff, but have a very difficult time getting past the self imposed stigma of having the virus.

Offline bocker3

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Re: Healthy with HIV?
« Reply #21 on: February 18, 2009, 03:37:23 PM »
This thread is disgustingly disturbing for those of us who have lived this disease in it's most gruesome.

Most of us still have very difficult side effects from both HIV and HAART, but the audience is completely tired of our reality. 

Interesting thread; considering that the science still determines that HIV is a terminal illness, and that the lifeline of medications for many on this board, especially the uninsured, is tied to the political assertiveness of those interested in keeping us alive.

I don’t understand your reaction here – where has anyone in this thread mentioned that they are “tired” of anyone’s particular reality??  A poster has asked to hear some individual stories of having a fairly uneventful (physically) history with their virus.  People have shared their reality with this poster.  Then you have audacity to come in here and say that doing this is “disgustingly disturbing” because “the audience is completely tired of our reality”??  First off, no one has belittled anyone else history and a couple of have mentioned that they know others have had a much more difficult to road.  Second, how dare you come in this thread and judge other’s stories.  You have no right to denigrate other’s realities with this virus, simply because they differ from your own.

Reading through this thread, I’d say that the only person who is “tired” of other’s realities is you, Moffie. 

I know that you and many others have had an exceedingly rough time with this virus.  I have lost friends and family to this pandemic and have current friends who struggle every day.  This does NOT make my story untrue or in any way “inferior” to anyone else’s.  I have been very fortunate to have suffered virtually no ill effects from HIV – to date.  This may change down the road, but as of today the FACT is that my life journey with the virus has been somewhat uneventful.  I’m very thankful for that.  The fact that my story differs from yours does not make it untrue, nor does it mean that I am tired of your reality.

Over the years that I’ve been in this forum, whenever this topic comes up, I know that we will be hearing from you.  I’m not sure if it’s envy that motivates you and brings out your anger – I hope it is not.  I know that you want people to be realistic and to understand that this virus wants to kill us all.  You can get that point across without denigration – in fact if you used that approach, you just might get more people to listen to you.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Miss Philicia

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Re: Healthy with HIV?
« Reply #22 on: February 18, 2009, 04:03:31 PM »
The wording was very clumsy in the opening post -- implying that if you ever get sick from HIV and get better you're no longer "healthy and HIV+" and then throw in the use of the word "normal" and I just get an ick/uncomfy feeling.

I wasn't going to say anything when this went up the other day, thinking I might be the only one getting this from the wording, but obviously it's not the case.

I'm sure that Inchlingblue did not, of course, have this as his/her intention.
"I’ve slept with enough men to know that I’m not gay"

Offline Inchlingblue

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Re: Healthy with HIV?
« Reply #23 on: February 18, 2009, 04:30:16 PM »
The wording was very clumsy in the opening post -- implying that if you ever get sick from HIV and get better you're no longer "healthy and HIV+" and then throw in the use of the word "normal" and I just get an ick/uncomfy feeling.

I wasn't going to say anything when this went up the other day, thinking I might be the only one getting this from the wording, but obviously it's not the case.

I'm sure that Inchlingblue did not, of course, have this as his/her intention.


Of course I didn't@@!! It's a little maddening that this subject has to be treated as if one were walking on eggshells for fear of offending anyone! Everyone's experience with HIV is different and valid. Miss Philicia, I have read and re-read my post and don't see the word "normal" anywhere, so not sure what you mean? The last thing I need at this point is to have words put in my mouth. Sheesh.  I wasn't implying that if you get sick with HIV and get better you are then no longer healthy, I was just looking to hear from people who have never gotten sick. I already know that many many people with HIV sometimes have gotten sick and that they then get better. I did not know if there are any people out there who have never gotten sick, hence, I limited my question to those individuals. I'm sorry if that offended you (or anyone else) Miss Philicia. And re: the word "healthy," I used it because my doctor used it with me, when he said to me that it was in fact now possible to "live a healthy life with HIV," this from a man who has been treating patients with HIV since 1984, what would he know, right? His saying this to me is what motivated me to post this in the first place and see if what he was saying was in any way remotely accurate. It seems from what bocker3 posted that this is not the first time that this subject has come up and offended some people?

Offline Miss Philicia

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Re: Healthy with HIV?
« Reply #24 on: February 18, 2009, 05:15:49 PM »
Other people in this thread were throwing around the word "normal" in subsequent discussion before my post, hence my confusion.  But you did use the word "regular" so that's the same thing.  Additionally, the manner in which you worded this "People who... no one would ever even know that they have HIV unless they wanted to disclose it themselves," which then seems imply that they are "irregular" if they... oh, have lipo or something.  I'm not going to apologize for feeling some slight discomfort reading this.

I'm sorry that you have to get so angry simply because I expressed a modicum of discomfort with your word use.  As I stated, I refrained from making any commentary until I saw that someone else also saw this from a similar viewpoint.  I did not come into your thread hurling rocks and having a tantrum however, so perhaps you should allow me a little bit of dignity in where I am coming from.

As far as bocker's commentary about Moffie, that's neither here not there as far as Miss Philicia's comments go.  I was merely expressing that Moffie's was not a singular instance, even if I chose to express my unease with more diplomacy.  As I stated, I was sure you did not intend offense so I'm not sure why you can't simply accept that I come from a different viewpoint after twenty years of infection.
« Last Edit: February 18, 2009, 05:17:29 PM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline mecch

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Re: Healthy with HIV?
« Reply #25 on: February 18, 2009, 05:37:01 PM »
This is an interesting threat about this Poz forum community.

I'm glad LTS have their say here. After all, its the forum where all the people can talk together since non-LTS cannot post in the LTS thread.

Let's all respect each other and discuss points without animosity. (I almost typed "ill will" but checked myself.  ::)

We can own and express our feelings, which obviously might be quite strong about the topic. And gingerly explain how other people may make us feel, without defining other peoples intentions so quickly.

This is a basic mediation technique: "When you say blah blah blah, I feel xyz".
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline BassMan

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Re: Healthy with HIV?
« Reply #26 on: February 18, 2009, 06:14:06 PM »
I was diagnosed in 2002. The only times I've ever been ill were as a result of reactions to my first meds - Combivir and Sustiva - neither of which agreed with me at all. I also had a bout of KS (which is why I started meds in the first place), but this was successfully treated and hasn't reappeared in almost 5 years.

Today, my meds cause me no side effects whatsoever. I may as well be swallowing aspirin. I hardly ever think about being positive any more. I work. I go out clubbing every weekend. I go to the gym 3 or 4 times a week. I run. I enjoy and get on with my life. My numbers are good and stable and apart from living with the knowledge that my body is playing host to this virus, I consider myself to be one of the healthiest people I know.

I have no illusions; I don't know what might be around the next corner and I realise I may not always be this fit and healthy. I've been fortunate to have free access to modern meds where many of those who came before us did not. But I prefer to remain upbeat.

For now, this is my reality of living with HIV.

Just saying.

Carl,
Manchester, UK


Diagnosed December 2002
CD4 810 VL 750,000

Started meds October 2004
CD4 405 VL >100,000

Latest Results: October 2009
CD4 888 38%, VL undetectable
on fosamprenavir/ritonavir & Truvada

VL undetectable since November 2005

Offline madbrain

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Re: Healthy with HIV?
« Reply #27 on: February 18, 2009, 08:34:31 PM »
madbrain: it's interesting that even though you get sick "quite a bit," and did even before the HIV, that your immune system is doing such a god job at controlling HIV, kind of ironic, I guess, but GREAT@!

Yes, I find it very interesting too. I never expected it when I was diagnosed, and the good lab results surprised me for a while, but I am very happy that it's the case.

Offline komnaes

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Re: Healthy with HIV?
« Reply #28 on: February 18, 2009, 09:11:58 PM »
As a relatively recent diagnosed I do notice that many in my position are too ready to hang on to the notion that despite the infection they can remain "healthy", and live a "normal" life. Although HARRT has improved the quality of many of our lives, it's still not a cure and for most of the world it's still an unattainable luxury, not to mention that some are still struggling with side effects, and we're still losing friends and loved ones despite complete adherence to meds, etc.

I find it rather distasteful to even hint that some LTS are being "envious" to the post-HARRT generation - it's not about political correctness, it's more about our obsessiveness about being physically "healthy" and "normal", so much to the point that we don't want to hear anyone telling us otherwise. I see that in my support group of mostly recently infected. Folks just don't want to be reminded of anything other than the supposedly miracle nature of new meds - just pop some pills at night and we will all live happily ever after.

I think that's the kind of attitude that is frustrating the LTS, not the fact that the post-HARRT folks do not have to suffer from mono therapy and all its nasty aftermath and side effects. And it's probably not good to the community as a whole because this type of contentment will make us more passive. It's also easier to hide (no more lipo, etc) and as this disease grows more invisible educational massages are increasingly difficult to get across.

I don't see any harm of sharing the good results that new meds are bringing us - but we need to remind ourselves that HARRT IS STILL NOT A CURE, we're still far from having one, and we're all still highly marginalized by the society and our lives are still depending on availability of meds that are expensive and not affordable by many..

Hence I will just stick to what I said earlier - I don't think I can ever be healthy with HIV, not until it can be completely cured cost-effectively. I just think it's a "healthier" attitude than keep trying to get assurances from others that they're feeling just fine and "normal".
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Begud

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Re: Healthy with HIV?
« Reply #29 on: February 19, 2009, 10:03:27 AM »
I think im oneof the lucky few to live a healthy life with hiv. I have been diagnosed in 2005 my cd4 count was on 396 at times it goes down to 376 and back to 390s and v/l on 5000.  My husband passed away in 1995 he was not diagnosed to be hiv+ but he had the symptoms, I was in Africa then.   I might have contracted the disease in late 1980s im not sure when.  I could still not have known my status todate if it was not for my son who is 18 yrs now.  My son has always been a sickly child since 3 months old, has been in and out of hospital quite a lot.  In 2005 his doctor suggested tht he be tested.  I didnt want him to go thru it before I was tested because I thought that If he was + the only way was thru me, at birht or breastfeeding.  So thats how I got to be tested. Since I found out about my diagnosis  Im still very healthy, I dont normally get sick except once in a while with a normal cold just like anyone else.  I work long hours, I dont have a special diet most of all I dont worry much about my status I know its there and I cant do anything about it.

Offline rschwass

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Re: Healthy with HIV?
« Reply #30 on: February 19, 2009, 10:02:43 PM »
   :P I just think we're being a little hard on those who are hurt by the postings of all us "healthy" boys and girls.  As mentioned, nothing is guaranteed for any of us, and I myself do worry that there's a lot of crap to be faced, it may be only a matter of time. Even if that doesn't prove to be true, (stay positive!) there's more than enough insensitivity going on around and outside of our communities to castigate each other too harshly.  We have everything to learn from each other, as I have from these postings.  There's plenty of room for complaint, even bitterness.  Good luck to everybody.

Offline anniebc

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Re: Healthy with HIV?
« Reply #31 on: February 20, 2009, 12:30:51 AM »
Some friends and I have been talking about this topic, this is what one of them had to say..I thought it well said and well written and wanted to share it with everyone here...because I think it needs to be said...The sentences in bold are my doing because those are the ones that got my attention and made me sit up and listen...I posted this in the LTS forum also.


"We LTSrs are marginalized. The arrogance of the newly infected is contagious, and those with the money to stave off the effects of HIV beyond the viral, will never understand. Money can't buy you extended life, but it can get you the best drugs, the best lipo correction, the best doctors. Money can save you from the ongoing and soul crushing humiliation of food stamps, subsidized housing, disability, medicare, food pantries, credit card/student loan lawsuits, and all the other things that, on an almost weekly basis, make you wonder out loud why you are not dead yet.


And don't think that just because a person has a job, that all is well. Health insurance plans that include HIV meds often do so at a pretty hefty co-pay. And if a job is lost, COBRA is available, for often the price of rent in the suburbs. And for those on Medicare, but who try to make something of themselves, there is the "donut hole" where thousands of dollars are required out of pocket before coverage resumes. And if one manages somehow to make it through the hoops and get disability, the return to the workplace once health is restored is difficult.

Of course it is illegal to refuse to hire someone due to a pre-existing condition. But most companies carry a thirty to ninety day "probational" period, during which time they can fire at will (and Georgia, USA is an "at will" state in perpetuity). The red flag of a thousand (or three) dollar insurance hit does not go unnoticed by the financial department, especially in smaller companies. I can't tell you how many friends have suddenly found themselves unemployed after making a few month's worth of medical claims.

HIV, for many of us, is a road - slow or fast - to almost absolute destitution. There are those who have great talents and who are entrenched in supportive and magnanimous companies, who do not feel that fear. They are fortunate, especially in the current economy. Money, or amazing insurance, can indeed make HIV a manageable, treatable, non-issue outside the psychological.

I get that. And perhaps I would be of some assistance to those whose financial levels at time of diagnoses are not good. But honestly, I am holding on to fraying rope myself here, and do not think another situation where I fight humiliation and despair is a good idea right now. I do not have the spiritual energy to fight that fight right now, nor the means to change/end the life I have. So staying away is one of the few things I can do that is actually a positive for my well being and survival."


I have posted this as Member of the forums and friend of the Author.

Hugs
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline woodshere

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Re: Healthy with HIV?
« Reply #32 on: February 20, 2009, 10:33:58 AM »
How wonderfully said Jan.

I by no means speak for the OP or have ever felt this way, but for some newly diagnosed people they see only problems, gloom, despair, death and are looking for something that gives them some sort of hope or realization that life can get better, hence they seek out positive stories.  If there is one thing I have learned through this forum is that each person's HIV journey is different from the way the virus effects us to the way we let it affect ourselves, to the impact circumstances that are completely out of our control have on us.  Comparing my HIV life to someone else's in an exercise in futility.  Having respect and greater understanding for each person is by far more beneficial and that doesn't mean always agreeing.

Regardless of the phrasing of these type discussions I always think they boil down to life before and after HIV infection.  I am very, very lucky because it is not a great deal different for me.  Since day 1 I have dealt with my HIV infection as another of a series of problems I have had in life, of course the problem is different but the skills to manage the problem are the same.  My medical bills have increased so I have changed the way I spend money and my budget, much the way I did many years ago when I had a gambling problem and ran up thousands of dollars of debt.  Didn't date much before HIV still don't.  Getting dumped by a guy because I was HIV+, sure that upset me, but not nearly so as when my partner of 5 1/2 years dumped my ass for a guy that was 15 years younger than me after we had moved halfway across the country to God forsaken Lubbock, Texas and was one of his students.  It was extremely difficult to tell my mom I was HIV+, but I did and in person, unlike telling her I was gay in a letter 16 years ago that also mentioned suicide, AIDS and then running away for a week.  I have always suffered from depression, still do but have discovered it is because I have bipolar disorder II.  My life has never been "regular", but I do believe my life experiences prior to being infected have certainly helped me to cope with my HIV+ life, and perhaps live just a bit more content. 
« Last Edit: February 20, 2009, 10:41:07 AM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline rob38555

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Re: Healthy with HIV?
« Reply #33 on: February 20, 2009, 09:39:19 PM »
I was diagnosed in 2003, when fell deathly ill with an unexplainable fever, and was hospitalized for a week.  They finallly tested HIV viral load and diagnosed HIV.  Within a couple weeks I started  Kaletra, Trizivir, the Trizivir  made me nauseous and worse.  After 2 weeks switched to Kaletra, Zerit, Emtriva.  After 3 1/2 years on HAART the Dr. and I noticed a little lipoatrophy, I switched off Zerit to Epizcom.  Still on Kaletra.  My biggest problem was and is loose bowel movements, sometimes urgent, but not often now. I try to eat a pack of Metamucil fiber bar every morning & that really seems to help.   Cholesterol is slightly elevated. fish oil pills twice a day help that.   I consider myself healthy, exercise regularly,  work more than full time, since 2003 have RARELY missed work for illness.   I don't think people would suspect I have HIV. 

Sep 2003 -   VL >3,000,000 - CD4 379     <-- Note: was also tested HIV NEG at the same time
Dec 2003 -   VL 5840 - CD4 837
Feb 2004 -    472 - 674
Apr 2004 -    UD - 755
Jul 2004 -    570 - 998
Sep 2004 -    400 - 852
Dec 2004 -    700 - 797
Feb 2005 -    UD - 690 <- Fuzeon 3 months
May 2005 -    UD - 963
Aug 2005 -    UD - 926
Nov 2005 -    UD - 798
Jan 2006 -    UD - 1000
May 2006 -    UD - 1050
Aug 2006 -    UD - 940
Oct 2006  -    UD - 1085
Jan 27 2007 -    UD - 816
May 12 2007 -    UD - 981 <- Kaletra, Epzicom
July 13 2007 -   UD - 1130
Sep 25 2007 -   UD 1014
Jan 7 2008  -   UD 880
Apr 15 2008  -   UD 870
Jul 7 2008  -   UD 1043
Oct 24 2008 - UD 1261
Jan 21 2009 - UD 792



Offline dingowarrior

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Re: Healthy with HIV?
« Reply #34 on: February 21, 2009, 01:37:21 PM »
It seems there are so many different "forms" that having HIV can take, probably as many as there are individuals with HIV. In the dark, old days, the odds were against us and most people with HIV eventually succumbed, became sick, many many died. That dynamic began to change with the advent of HAART. It's no longer a death sentence, and hasn't been since HAART. What I'm curious about is hearing from people who basically are living regular, healthy lives, albeit with HIV. People who have access to their meds (no insurance issues, etc), are adherent, have never gotten sick and have had no significant side effects to speak of from the meds. People who, other than the fact that they have to get their blood monitored several times a year and have to take ARV medications, no one would ever even know that they have HIV unless they wanted to disclose it themselves. Are there many of these people out there, I wonder? I don't want to sound naive, I really have no sense of this and, as someone diagnosed five months ago and still healthy and not on meds yet, I'm curious to know. Thanks ;)

I'm one of the people you discrib ed. I was diagnosed after a routine life insurance test and that's how I found out. At first I kept waiting for the other shoe to drop and eventually get sick,but thank God that hasn't happened,I had terrible numbers at first,and the doctor said he was surprise I hadn't got sick. But again, thank God I live a absolutely normal live other than taking a pill every night.
In fact,my life is so normal that my wife and I just recently Had healthy baby girl! (conceived the old fashion way)
« Last Edit: February 21, 2009, 01:40:32 PM by dingowarrior »

 


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