Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol

HIV Life >> I Just Tested Positive

Pages: 1
dean661
Member

Reged: 05/08/09
Posts: 19
Loc: California
long term non progressor
      #246684 - 07/23/09 09:17 PM

I have a question for all of you beautiful people. My first test results came back and were very good. My hiv specialist asked me what my nationality was. When I told him scots irish he told me that makes sense to him. Evidently many people with a northern european ancestry have a defective gene that makes it more difficult for hiv to get a firm hold on the body.(The same gene evidently makes you more suseptible to west nile) My question is how many of you have been given this glimmer of hope titled long term non progressor, only to be dissapointed later when it turns out to not be true. My doctor commented on my lack of emotion to the news I just can't bring myself to put any hope in his theory this close to the original diagnosis..you know what they say if it sounds to good to be true...sorry to ramble just curious to know if many people hear this after being diagnosed positive.

Post Extras: Remind Me!   Notify Moderator  
August69
All Star

Reged: 03/22/08
Posts: 79
Re: long term non progressor new
      #246685 - 07/23/09 11:14 PM

Well not sure if the Genetic aspect is true, but I am from an Irish/English background and I can say that the virus has been quite successful in multiplying. I had to start meds shortly after conversion (June 2007) started meds Dec 07, and am currently doing alright,but definately need to take the medication. (On Atripla here)

My partner on the other hand is Ukrainian background. He converted back in 2004 and does not need meds. His VL is low and CD4 count is high.

Post Extras: Remind Me!   Notify Moderator  
dean661
Member

Reged: 05/08/09
Posts: 19
Loc: California
Re: long term non progressor new
      #246686 - 07/24/09 12:04 AM

At this stage I know its a waiting game just like you living with my partner of 6 years with no real support system. Its just not talked about. I guess I'm reaching out here yes for information but also to interact with people who have a better idea of what I'm going thru than my Partner and even myself. Thanks for responding

Post Extras: Remind Me!   Notify Moderator  
Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: long term non progressor new
      #246691 - 07/24/09 06:57 AM

It has to do with a mutation in the CCR5 receptor. It's the same genitic "defect" that saved people during the Black Plague. The first link below is from that show.

It looks that this discovery is what led to the creation of the fusion inhibitor class of drugs, the first one being Fuzeon which came out the early part of this decade.


http://www.pbs.org/wnet/secrets/previous_seasons/case_plague/index.html

Also some other links about the CCR5 mutation.

http://www.kaisernetwork.org/daily_reports/rep_index.cfm?hint=1&DR_ID=53106

http://www.hivgene.com/what-is-ccr5.php



Post Extras: Remind Me!   Notify Moderator  
JLacan
Newbie

Reged: 04/20/09
Posts: 3
Re: long term non progressor new
      #246710 - 07/25/09 06:08 AM

I've heard of this too but I wouldn't put too much stock in it. Fact is, if you've got HIV you got it and it's more likely gonna do you in than not.
I'm Friesian which is about as Germanic as it gets but that hasn't stopped me from getting viral loads over 100,000. Some people of Germanic background might have this gene, but not everyone.
IMO, once you have HIV, medicine is what will save you, not where you come from.

Post Extras: Remind Me!   Notify Moderator  
Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: long term non progressor new
      #246711 - 07/25/09 10:09 AM

I agree for most of us we need to be on medications. I've been on them since 1996.

However I guess it's a good thing that NIH and other research facalities are not so quick to decide this is baseless.

They've been working to understand the hows and the whys that some people infected with HIV can control their virus without needing any medication. Not everyone with a European background is this lucky but the demographics point to a larger number of LTNPs with a geneitic European backgroud. It may very well be that the OP is a LTNP and will never need to be on medications.

And while they work on the whole Long Term Non-Progressor angle, we've already seen benefits from this work that you are so quick to discard....We would not have the 4th class of medications; Fusion inhibitors.

IMO, after 12 years of the toxicities of the medications, Id be thrilled if they can figure out a way that I can get the hell off these medications...more power to them...you think HIV will do you in...wait until you've hit your body with years of medications.


Post Extras: Remind Me!   Notify Moderator  
Z3EdNJ
Newbie

Reged: 07/27/09
Posts: 2
Re: long term non progressor new
      #246728 - 07/27/09 08:47 PM

Greetings from a "mostly" African American. I'm glad you got back some good results. You said it was your first test so I'm curious about how your doctor concluded that you are a long term non progressor.

I tested poz in August 1986 so my 23rd "anniversary" is coming up in a few weeks. I'm probably a long-term non-progressor or perhaps an elite suppressor. (I do like being "elite"!). My CD4 count has never been below 800 and was 875 in May. My viral load has never been above 2,000 and is often undetectable.

Maybe I have a little Northern European in me :-)

Ed

Post Extras: Remind Me!   Notify Moderator  
tenrobb
Newbie

Reged: 07/26/06
Posts: 1
Loc: Long Island, NY
Re: long term non progressor new
      #246729 - 07/27/09 09:20 PM

i'm labeled a long-term survivor. i can trace my infection back to 1974 and "patient zero" ..... i lived in SF and there was plenty of fear in 1979 with "gay plague", friends getting sick + dying, too. we all knew something was awry with our immune system and within several years HIV was discovered and a test was developed. so in 1985 i was officially POZ, and my MDs were saying i would not make it to 1990. there really was only AZT and then a few more nukes. i never felt sick enough to take anything until 1991. i did montherapies and then was in early trials for PIs (norvir + combivir) - the start of drug "cocktails". i have only been sick twice enough to be hospitalized - and both times were caused by the drugs i had been taking, failing on me !! my blood has been analyzed by all the top researchers - due to my ability to fight, survive and mostly, thrive. drugs suck, but i know they are necessary. i know the "black death" survival helps, and i am a irish/scot/english mix, too, and have heard that possibility, too. but we have a virus and it does need suppression. just be grateful you may have this genetic edge, but don't think THAT alone will save you. the meds can feel like poison but they control HIV. you can gain inner strength to thrive from your background and a possible "edge" you may have, and just never, never give up !!!

Post Extras: Remind Me!   Notify Moderator  
drew
Newbie

Reged: 01/22/09
Posts: 2
Loc: Australia
Re: long term non progressor new
      #246732 - 07/27/09 09:44 PM

HI Dean,
Aussie guy here. I've been positive over 21 years, and doing ok. You are lucky to be given a good prognosis, so dont lose sight of your long term goals. I was told 21 years ago that I had 6 months to two years to live. I am so glad that I proved them wrong. So far, I have been lucky enough not to have to go onto meds, although I may start soon. Not sure about genetics, but i do think that having a positive (no pun intended)mental attitude and living a healthy lifestyle can go along way to increasing your life expectancy. This is not applicable for everyone, as I do consider myself to be one of the "lucky" ones.
Good luck, and I hope it all goes well for you

Andrew

Post Extras: Remind Me!   Notify Moderator  
Z3EdNJ
Newbie

Reged: 07/27/09
Posts: 2
Re: long term non progressor new
      #246745 - 07/28/09 06:25 PM

Duh! I forgot to add in my previous reply that I don't take HIV medication.

Thanks to the guy who sent a private reply to remind me that I forgot that key piece of information.

Post Extras: Remind Me!   Notify Moderator  
dean661
Member

Reged: 05/08/09
Posts: 19
Loc: California
Re: long term non progressor new
      #246749 - 07/28/09 09:30 PM

Hi Z3edNJ. He hasn't determined it to be so but due to having symptoms of thrush and whatever else he factored in he believes I have been positive for 10 plus years which coincides with my years as a bartender and a rather carelesstime in my life. He believes my numbers should be much worse. But make no mistake the jury is still out. Thank you for responding regardless of what my status ends up being I'm thrilled to know there are those among us blessed with this. It only makes sense that this is a great area to study and hope someone is doing so for all of us. I will definateley post here what occurs with my next results at the end of this month to update those following this angle.

Post Extras: Remind Me!   Notify Moderator  
dean661
Member

Reged: 05/08/09
Posts: 19
Loc: California
Re: long term non progressor new
      #246751 - 07/28/09 09:54 PM

Hi Andrew thankyou for sharing your story with me. It gives me hope regardless of my long term status. I too have experienced the loss of great friends and am sorry that you had to experience from the VERY beginning. I can't imagine the fear you must have felt in those early days. Thanks for sharing the hope you gained from your experiences I really appreciate it. Dean

Post Extras: Remind Me!   Notify Moderator  
PSWrandy
Member

Reged: 07/06/07
Posts: 23
Loc: wa, usa
Re: long term non progressor new
      #246767 - 07/29/09 03:52 PM

Dear Dean,
You seem to be concerned about accepting the judgment of the doctor and what is likely a very valid knowledgeable determination in your case. I wish my doctor would tell me i was a LTNP. I would be delighted to not take any medications and to know that my body is handling and fighting the virus. There are a lot of people who are labeled as LTNP and you are fortunate to be one of them. I would still go for regular checkups and blood tests to verify that your body is handling it and dealing with the virus. Unfortunately i have only portion of that blood and do not have the gene you are fortunate enough to have. Take it easy and enjoy the fortune that you were born with and that you have a doctor who is likely being very honest with you rather than setting you up for medications you do not have to take.

randy

--------------------
Respectfully,
randy

Post Extras: Remind Me!   Notify Moderator  
dean661
Member

Reged: 05/08/09
Posts: 19
Loc: California
Re: long term non progressor new
      #246774 - 07/29/09 10:13 PM

Hi Randy thanks for your response. I know to many on this great site probably view my concerns as ungreatful or worse but let me clarify a couple things. I am indeed pessemistic since I've only gone thru two blood draws the seconed was because Kaiser performed the wrong test so I only have cd4/viral load results from one. Kaiser doesn't cover the 500 dollar gene test to confirm the mutation so I haven't had it done yet although plan to when I can.all my hiv specialist said is its great news and looks like that MIGHT be the case, So nothing is for certain. The three main reasons for starting this post was to find out if there are a lot of people who hear this LTPN thing at first only to find ouit later it was not the case. Next I wanted to get an idea from"the body" community if delaying meds is a good idea under any circumstances. It troubles me to think of myself waiting for something bad medically to happen before acting. It boils down to I havnt deciphered the mixed opinions I've read on line. The final reason for the post is interacting with the beautiful strangers on this site is my only avenue of discussig what is going on with me and for now I'd have it no other way. Thanks again Randy for making me think I love that and my sincere apologies to anyone if I've come of as whining about a blessing. When and if this gene mutation is confirmed I won't be throwing it in anyone's faces but I promise the pessimism will go away. Thanks all for the pacience,knowledge and genuine concern that flows out of your responses.

Post Extras: Remind Me!   Notify Moderator  
dean661
Member

Reged: 05/08/09
Posts: 19
Loc: California
Re: long term non progressor new
      #248455 - 11/17/09 01:36 PM

Hey everyone. I just wanted to update all who followed this thread. As it turns out I am not in the long term non progressor category but instead I'm like the majority of people on this site; in a daily battle against HIV and all of the intricacies that go along with it. Although disappointed in the news that I once again am not invincible to this disease I am happy to report I've started meds with very little adverse reactions and have left one more piece of denial in the past. This should free up a little more time to figure out what my new reality is....not my strong suit. However so far so good with the meds. Thanks for all who listened and guided. I'm sure this interaction has lessened the blows every step of the way.

Post Extras: Remind Me!   Notify Moderator  
Pages: 1


What's New at TheBody.com

Additional Information
0 registered and 1 anonymous users are browsing this forum.

Moderator:  TheBody, bogart, crabman, riverprincess 

Permissions
      You cannot start new topics
      You cannot reply to topics
      HTML is enabled
      UBBCode is enabled

Thread views: 8383

 
Jump to

Contact Us | Privacy Statement The Body

*
UBB.threads™ 6.2.3