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Author Topic: Advice needed  (Read 1907 times)

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Offline worried100

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  • Posts: 36
Advice needed
« on: January 09, 2011, 09:43:09 AM »
I have been positive for a year and a bit now and have been coming here since then.
I have also visited another place that you guys hate.
I was unsure what to think about this virus, whether it be fake/man-made but i am sure this is a real thing now(I still believe it is a man made virus, i know most on here wont agree but its my belief)

My cd4 counts have been 420, 430,350 and at last blood draw in july they were down to 220. I am starting to feel tired and i need to go on the meds(I know this now) Viral loads were 11500,54000,14000,?? respectivly.

There are quite a few people on here who have lived along time with this virus but they all seem to have gone along time without being on the meds beforehand.

Is there any people here who have been on the meds for along time that have had to go on them quite quick due to a virulent type strain of virus/shit immune system?

Part of me thinks that those who live with this virus for along time have an excellent immune system and when needeed can tolorate the meds well.

Pls indulge the conspiracy side of this question-Are there any LTNP who are black?

Any info appreciated
xx

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Advice needed
« Reply #1 on: January 09, 2011, 10:27:15 AM »
Hey Worried,

I presume your doctor has told it it is time to start  meds. Frankly, I think you waited too long.

I am one of those to whom you refer who was a pozzie for a long time prior to starting meds.

Remember that when I turned up poz, there were no treatments or meds. In fact, they didn't even know how to properly treat the opportunistic infections, which is why people died in droves.

We also didn't have viral load tests until 1995, which means all we had to go on was an overall CD4. We didn't use percentage then either.

I was lucky, others weren't. It is just that simple.

You said you tested positive a bit more than a year ago. But, just looking at your numbers, it is possible you were positive for a longer period of time. There is no real way to be absolutely sure of it, but it is certainly possible.

Or, you could have been infected with a more virulent strain of the bug, as you alluded to.

However it came about, the bottom line is you need to start meds, and, sooner is better than later.

Has your doctor mentioned any particular regimens?

Regarding your last question, no, I have not met any LTNP who are black. I believe it is something found in the genetic structure of people whose ancestry is northern european.

It could be possible if one or more of the person's parents had ancestors from that region, but I don't know how prevalent it is.

HUGS,

Mark
« Last Edit: January 09, 2011, 10:30:31 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline worried100

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Re: Advice needed
« Reply #2 on: January 09, 2011, 10:55:18 AM »
Mark!

Nice to talk to you. (You are one of the reasons i have decide to join, you always come across as friendly and not bitchy) ;)

I left holding of on meds as i wasnt sure about this whole HIV buisness, I have seen for myself now how it is making me feel.(I always go by how i feel, i dont trust people very easily and always look for thier angle or what is in it for them)

So i am not going back to my original HIV clinic. The 1st HIV nurse was lovely, but she left now it is a jumped up youngster who thinks she can talk to me like a three year old.

What promted this change of mind is that that i am getting out of breath and have a pain under my breastbone that comes and goes and has progressivly gotten worse. I am thinking it is the start of PCP or Oesophageal candidiasis.

I thought there would be hardly anyone of colour with the status of LTNP which backs up my own thinking about this virus(and while on this board that is all i will say on this matter, i will leave my theories on the doorstep so to speak)

You say i have left it too late for TX, does that mean i am going to die soon??



Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Advice needed
« Reply #3 on: January 09, 2011, 11:02:22 AM »

You say i have left it too late for TX, does that mean i am going to die soon??


NO! That's not what he means at all. He just means that it might take you a little longer to get your CD4s up to where they should be. Once you start treatment, you'll be fine.

You need to get that chest pain checked out and the sooner the better. It may not even have anything to do with hiv - not every health thing that goes on with our body does.

Please get that checked out tomorrow!

Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline worried100

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Re: Advice needed
« Reply #4 on: January 09, 2011, 11:17:48 AM »
Ann!

I think you are great too ;)

That is good to know!

I am resistant to the non nukes (i think) when they get my notes it will say in them.

So i am resistant to alot of drugs already >:(

I cannot forgive the person who gave this to me, I asked him to get tested he said it was neg, i still used a condom, it broke now i have HIV.

I never slept around and this is so unfair(I know there are more of you on this board too) He has stolen my life from me and i wish him dead.

Offline littleprince

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  • Posts: 201
Re: Advice needed
« Reply #5 on: January 09, 2011, 11:24:34 AM »
Worried,

Whatever you think about the virus it's great that you have decided to start treatment. Give them a few weeks to work and you'll be amazed at how much better you feel.


You say i have left it too late for TX, does that mean i am going to die soon??


In the past doctors waited until your CD4 count reached 200 before starting treatment. Now days it is more common to start at 350 or even higher. There's no exact number you have to start at. The important thing is you start. I started at 10 and now feel full of energy and healthy.




What promted this change of mind is that that i am getting out of breath and have a pain under my breastbone that comes and goes and has progressivly gotten worse. I am thinking it is the start of PCP or Oesophageal candidiasis.


Like Ann said, it's important that you go to your doctor and have this checked.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Advice needed
« Reply #6 on: January 09, 2011, 11:30:29 AM »
Resistance is futile to the non-nukes is fairly common and I wouldn't say that it was "a lot" of drugs. There are plenty of other drugs you can take instead. Try to not worry about that so much.

And try to not put moral judgements on hiv infection. It's just a damn virus, not a judgement for "sleeping around". Putting moral judgements on a virus is only going to cause you pain and sadness in the long run. Don't do that to yourself.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline roy100

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Re: Advice needed
« Reply #7 on: January 09, 2011, 11:36:57 AM »
You need to start your treatment right away.
I waited to long, and had all kinds of infections, just because my brother is a Dr I could get prescriptions for every opportunistic infections.
Yet it did not come to my mind I had Aids.
Just until I was depress, lack of energy, wanting to sleep all day, the Dr tested me and came back with a CD4 of 46. I had probably been sick for 10 years.

The lower your CD4s get ( nadir ) the less chances your immune system will fully recover.
It will also bring more brain complications, as AIDS produces a general inflammation of everything, including the brain, probably causing from depression , to memory loss, to bacterial and fungus infections, all kinds of cancers.

Its time to start treatment, sometimes the person you think was the one who infected you is no the right one. mMny times just one sex intercourse wont do anything, as African statistics had proved it.

It just happens when the right condition comes, maybe some kind of bad luck, or law of probabilities if you had to much sex, as it happened to me.


Hate, wont take you anywere, and its just a phase you go trough. You have to go on living as you are now.
Life will be the same, just you will be taking your medicine just as ordered, not missing any pill.

Forget all the crab as if AIDS is just a fabrication, or a conspiracy theory.
it is just simple there, and we are an example that treatment works.
Greetings, Roy
Diagnosed 18Th March 2010
March 30Th VL +100,000 CD4 46
CD8T  575 CD8 %60.6
On Truvada and Kaletra. . Remeron 15mg  and150 mg  wellbutrin xl for depression. Clonazepan 2 mg to sleep. Omeprazole 20  once a day.
July 17 2010 Vl 362 CD4 155, 6.4 %
CD8T suppressors 1482 CD8% 61.1
 Nov 16 2010: V l 937 CD4 188,10%
CD8T Suppresors 997 CD8%55.8
August 15th 2011 Vl UD, less than 40.
CD4:543(26.7%) CD8:887 (43.6 %) Ratio .61
Jan 14th,2012 ,less than 40.
CD4:478 (24.4%) CD8: 962 (49.1%) Ratio.50
June 2012 CD4 599, CD8 856 UD
Oct 2013 CD 702, CD 843 UD Ratio:.87

Offline worried100

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  • Posts: 36
Re: Advice needed
« Reply #8 on: January 09, 2011, 11:45:42 AM »
I know you guys are right and its not his fault but i cant help the way i feel, especially as now that i have 100% accepted i need the meds.

I am a hyperchondriac and when i start these meds it is going to be hell with imagined and possibly real side effects.

I will worry i will fall down dead with complications, i will worry they will cause cancer(Never mind that i smoke like a chimney :o)

Any ideas about meds i could take? (I realise i have to liaise with the HIV nurse) but what are the least side effect meds?
xx

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Advice needed
« Reply #9 on: January 09, 2011, 12:03:08 PM »
Reyataz, Norvir and Truvada is a well-tolerated combo and has the advantage of being a once-a-day dosage. You would be wise, though, to make sure which class of meds you're resistant to before thinking too hard about any one combo.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline bear60

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  • Posts: 4,104
Re: Advice needed
« Reply #10 on: January 09, 2011, 12:37:49 PM »
I am one of the Long Term Non Progressors, and let me tell you, the hardest thing for me has been to watch all of my friends die from this horrible virus.  Dont play games.  Get your meds before its too late.  You have good reason to be WORRIED, but dont mess with this virus, it wins every time.
Poz Bear Type in Philadelphia

Offline ad2san

  • Member
  • Posts: 186
Re: Advice needed
« Reply #11 on: January 09, 2011, 01:57:38 PM »
Reyataz, Norvir and Truvada is a well-tolerated combo and has the advantage of being a once-a-day dosage. You would be wise, though, to make sure which class of meds you're resistant to before thinking too hard about any one combo.

I totally agree with Ann, that's the combo i am under and so far so good
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Apr 2011 CD4 523 UD 21%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
October 2012 CD4 684 UD 29%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
May 2013 CD4 385 UD 28%
July 2013 CD4 CD4 636 UD 25%
Oct 2013 CD4 588 UD 39%

Offline gemini20

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Re: Advice needed
« Reply #12 on: January 09, 2011, 04:19:12 PM »
Are there any LTNP who are black?

I can give you one example; one of my former boyfriends who I met in a youth group for young positive men and women back in the early 1990s.

He start anti-retrovirals for the first time ever last year after living with HIV for 22 years. His CD4 count dropped below 200 which prompted him to start meds after such a long time without needing them.

I'm sure there are others but personally he's the only one I know.



Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline worried100

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Re: Advice needed
« Reply #13 on: January 09, 2011, 05:46:59 PM »
Thanks for the advice everyone

Offline Rev. Moon

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  • Smart ass faggot ©
Re: Advice needed
« Reply #14 on: January 09, 2011, 06:08:11 PM »

Worried, you have been given some good advice by Mark and others.  Since you noted on another thread that you are a female, be sure to participate in the Women's Forum; there you will become acquainted with some great ladies like Betty, Michelle, Raven, Jan, Netta and others.  It may also make you feel more comfortable and welcome as you navigate through life with HIV.

Be well and please get started on those meds.  You will be fine.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline anniebc

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Re: Advice needed
« Reply #15 on: January 09, 2011, 06:38:58 PM »
Resistance is futile to the non-nukes is fairly common and I wouldn't say that it was "a lot" of drugs. There are plenty of other drugs you can take instead. Try to not worry about that so much.


Ann is right as always, I'm resistant to the Non-Nukes as well but I have never had any problems putting other regime's together, there are only a handful of Non-Nukes anyway so it's not a big deal.

Don't stress out, don't let this Virus control you, stay on top and take control.

Jan
« Last Edit: January 09, 2011, 06:42:08 PM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline mecch

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  • red pill? or blue pill?
Re: Advice needed
« Reply #16 on: January 09, 2011, 07:54:23 PM »
Worried -
I went on HAART, the antivirals, very fast, because i had a shit immune response to the infection.  The virus itself wasn't particularly virulent and was also non resistant.  The medicine works for me.  I tolerate it well enough.  Protease wasn't the best for me but certainly liveable.

Oh, also - Im white.

Oh also - there is no cure and also the virus is not man-made. Well if you believe that, it doesn't matter really, at least you also believe its real and kills.  

So if its your time to take the medicine, just do it. Far as I know, there is absolutely no genetic basis for one ethnicity or another to do better or worse on the medicine. The key is to have a good doc and good access to the medicine for the rest of your life and to take it as prescribed. Its pretty simple.  

Also maybe "they" will release that cure, (must be the North Koreans, in my opinion, or maybe its the legacy of the Nazi SS seeking ethnic cleansing...), and eventually you wont need the medicine.


« Last Edit: January 09, 2011, 07:56:25 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Advice needed
« Reply #17 on: January 11, 2011, 11:37:18 PM »

You say i have left it too late for TX, does that mean i am going to die soon??

No, I didn't mean that at all. What I was referring to was that it is the standard of care to begin people sooner, before their CD4s drop into the 200 to 300 range.

In fact, many doctors start once the CD4s drop below 500.

My doc did, and that was in 1996.

Don't fret being resistant to the non-nukes. As Ann, Jan and others said, there are a lot of other combos that can work very well.

Please do take care of yourself.

HUGS

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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