POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: NewYorkKat on July 20, 2007, 10:10:50 am
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I have a question: What qualifies a person to be a long term non progresser? What causes this? Genetics? Weak strain? Sure like to know. Thanks!
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Hey Kat,
I'm not sure of the exact qualifications, but I believe it is someone who has lived with HIV for at least 15 years, has never had to start meds and, I think, either has a controlled or undetectable viral load. I am not sure of the last point.
A long-term non-progressor either has to have an undetectable viral load or a low one, but I don't know which it is. We have some people here who are long-term nonprogressors, so I'm sure they will clear this up.
As to what causes it, researchers are doing studies now to determine the causes of this. In some cases, there are people who have a genetic predisposition for this. I don't know if attenuated viruses can contribute to this or not.
My first doc said I was a long-term slow progressor, which meant that I eventually started meds, but I managed 11 years without them with no problems, OIs, low CD4s or high viral loads.
HUGS,
Mark
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Because the studies being conducted on Long Term Non Progressors are mostly based in genetics....I would say that genetics is the reason some of us HIV positive folks are called NON Progressors. I believe that there are several catagories of non progressors.
I am one of those Non Progressors who has never been on meds. I first tested positive for HIV in 1989 but have not "progressed" to needing to take meds to control it and have not "progressed" to an AIDS diagnosis. The study I am in is the one at Harvard : http://www.massgeneral.org/aids/hiv_elite_controllers.asp
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I'm also contributing to the Elite Controllers study, but I'm more involved with "CD8-mediated immunity" studies at NIH where I got my LTNP tiara 15 months ago at the end of a drug study where I had been on placebo....we also uncovered CSF samples which had been stored in 1984 (I've always been easy for sweet-talking scientists) that had HIV in them. I was on meds from 6/98 to 10/05 because at the beginning of that period my viral load was 680,000 due to having acquired hep A: I had ducked dealing with HIV for years, then I sezed onto meds for five years while my doc kept encouraging me to stop them.
As for the "immunity," it relates a specific mutation -- a B44+ allele in my human lymphocyte antigen (HLA) genes. It's not one of the automatic predictors of LTNP-hood, so the researchers want to know what else is so different about my system that my suppressor cells can normally control the virus on their own. The secret is undoubtedly associated with why my body would reject surgical tubing in the brain and why my allergies are so severe.
Geez.... all anyone wants me for is my body.....
Cheers,
David
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Please expalin more: The secret is undoubtedly associated with why my body would reject surgical tubing in the brain and why my allergies are so severe.
I have pretty severe allergies too and would like for you to talk about this.
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Please expalin more: The secret is undoubtedly associated with why my body would reject surgical tubing in the brain and why my allergies are so severe.
I have pretty severe allergies too and would like for you to talk about this.
Okay, so the line of reasoning and medical drama goes like this..... The genetic blips that are giving me a robust CD8-mediated defense against HIV are most likely responsible for other, more problematic immune responses to unwelcome foreign bodies like allergens and implants. Nasty virus called HIV gets recognized efficiently and gets its ass kicked. Pollen and mold get a similar reception from another part of the immune system, as does surgical tubing. The docs won't speak conclusively about it, but a few keep saying that it's got to be connected in a way they just don't fully understand yet.
When I was almost 15 years old, I was diagnosed with hydrocephalus (fluid build up in the brain) attributable to aqueductal stenosis, a condition where the openings that let spinal fluid out of the brain were not sufficient. The underlying cause was assumed to be genetic since there are assorted neurological issues on both sides of the family tree. The treatment involved running a plastic shunt from a catheter inserted into my brain into my abdomen, all underneath the skin. It's a procedure more often associated with babies who then require shunt revisions as they grow older, or they grow out of the condition altogether. I was almost at my adult height, so the shunt was presumed to be a lifetime appliance.
After five months, I was back in the hospital with severe headaches, photophobia, vomitting and loss of eye coordination, sure signs of a shunt malfunction. The neurosurgeon/asshole noted that my body had coated both ends of the shunt with tissue that was packed with white cells, but he put another one in. Three months later, same thing. Seven months after that..... and a total of 20 times before I turned 20, usually grouped three or four within several weeks. Lots of CSF and blood samples were stored up in 1981 and 1984 at three teaching hospitals in Dallas and Houston.
In 1994 I had four more surgeries in under five months, and the surgeon (same one who did the original) had the sense to do an "old school" procedure without putting tubing in me on the last go-round (Xmas 1994). I've been fine ever since. However, during the surgery the surgeon cut himself and had me tested for HIV--nice that he wasn't tested and his results given to me. He supposedly told me that I had HIV while I was still hospitalized and recovering, but the information was not conveyed to my primary physician. In retrospect, I am content that I was not tempted with mono-therapy back then. Still, it was upsetting to learn this shortly after being tested again in May 98, when my primary doc and I got my old hospital records. Having acquired hep A, my viral load was 680,000 and my CD4s were 231 (18%), so I started meds as soon as my bilirubin was down. Within four weeks, my viral load was under 400, and my CD4s were back in the 700s after 8 weeks.
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Thanks David
Thats really interesting. Back in the early 90's there was a vaccine study I tried to become part of but was told my "immune response" disqualified me from the study...as they were looking for very little immune resonse" to a skin test as a qualifier.
Do you have the English and Western European ancestors as well..? Or is the story about surviving the plague all a bunch of stuff.
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Do you have the English and Western European ancestors as well..? Or is the story about surviving the plague all a bunch of stuff.
My paternal line runs back to eastern Wales in the vicinity of a number of pockets of Plague survivors. I'm connected up with a several *distant* cousins through Family Tree DNA. My known genetic blip of interest is a Human Lymphocyte Antigen B44+ allele noted by NIAID -- it does not predict LTNP hood alone, so I'm a professional lab rat to find the "host factors." It does, however, suggest strong CD8 responses.
http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=386211 (http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=386211)
http://findarticles.com/p/articles/mi_qa3725/is_200203/ai_n9047059 (http://findarticles.com/p/articles/mi_qa3725/is_200203/ai_n9047059)
I ordered CCR-5 delta-32 testing from FTDNA a few weeks ago and should have my results in four weeks. If I do have one copy, it probably will not explain why B44+ works so well for me, though it would suggest that HIV was going to have a hard time getting in my cells to begin with.
Cheers,
David
P.S. Someone asked privately about the stored samples taken in the 80s and why I mentioned them and then didn't say more. Three years ago I got a call from one lab that had tracked me down through my alma mater a few blocks from them, apparently in some "what if we have the last remains of this person" attempt to locate donors before destroying samples. I told them that I'd be very interested to know if they could find HIV in the CSF sample taken over a year after the only thing like "seroconversion sickness" that I've ever experienced. The med student and I wound up crying on the phone together three weeks later when she phoned with the positive results--the proper channel was the letter in the mail to me, but she and her supervisor wanted me to know as soon as possible.
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Hey RedHot,
I read your post with interest. I'm also a 17 year survivor. Late starting the meds. A few interesting facts that I have found that my doc (have had the same doc for 17 years) cannot explain. My highest VL has only been 1200, that when my cd4 was 30. I've never had any infections or hiv associated diseases. I just found out I was HIV by routine work test. (I'm an RN) I do remember to the day I sero coverted. I become deathly sick. Severe flu like symptoms. I was in VA on vaca at the time and was rushed back to a NC hospital. Now looking back from childhood to now I have to agree with the immune respone theory. From childhood up I've always had severe allergies from major rashes, to just a simple cold having severe reactions. I lived in a plastic body like suit for a week from some unknown skin reaction during childhood. If stung by a bee I had the most severe reatction to the point of being taken to Duke for immune testing as a child. I have always and still do have severe reactions to everything. If I touch certain thing I break out in a rash, swell up like a frog. ..But back to the VL, I could never understand why my VL has never been above 1200, and like I said when I sero coverted I thought I would die. That has to be the sickest I've ever been. But hey, my current cd4 is around 500 with undect VL.
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Newbern,
Ya know, about the only way they're going to dig further on your response is for you to go off meds and see how your body manages the virus on its own. Your current doc can monitor your progress at 3 month intervals. Then, if you have unusually fabulous numbers at 6 months or a year, you can call up NIH and volunteer on the basis of the results to that point -- heck, you could call them now and explain your situation, then the intake folks would whore your info outto researchers with potential interest [I enjoy the notion of being pimped out by my study coordinators.... now, if a couple of the HOT Public Heath Service male RNs would let me cook them breakfast!] . 12 months off meds with stable CD4s and a low viral load is still, I believe, the criteria for Elite Controllers at Mass. General. The other difference in the research entities is that Elite Controllers would "contract" with your doc to draw blood and gat your consent, while NIH works predominantly through the Bethesda campus.
Cheers,
David
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I just want to add that I never had any seroconversion "flu like" symptoms or illness that I can pinpoint as being different than any other flu, pneumonia or bronchitis that I have had in the past. So, even tho my "immune response" was greater than they wanted in that vaccine study, I did not have any sero conversion illness out of the ordinary. I think its important that people know that a seroconversion is not always noticible or out of the ordinary.
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i WAS TOLD I WAS HIV IN 1987 BUT DIDNT FEEL LIKE ANYTHING WAS WRONG WITH ME SO I DIDNT
TAKE MEDS FOR 16 YRS..
I BELIEVE ITS THE TYPE OF STRAND YOU CATCH...MY EX LOVER WHO WAS DIANOSED WITH AIDS IN
1986 WENT SO FAST.........I THOUGHT ID WOULD BE NEXT..BUT HERE I AM..YEARS LATER..
I WAS IN A TESTING TRIAL FOR HIVers.. I WAS ON THAT FOR 18 YRS..THEN I ASKED ..WELL WHAT DID
YOU FIND OUT IN THE 18YRS YOU HAVE TESTED ME AND OTHERS...
I WAS TOLD THERE ARE SOME TCELL OR RECEPTORS, HAVE HOOKS ON THEM AND THEY ARE THE ONES THAT
ATTACT THE GOOD TCELLS..
I WAS TOLD, I HAD ALOT OF TCELLS JUST FLOATING AROUNG, NOT ALL OF THE RECEPTORS HAD HOOKS
SO, THEY FIGURED THATS WHY SOME PEOPLE LAST LONGER THAN OTHERS..
I HOPE I ANSWERED YOUR QUESTIONS..