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Long term non progressor

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--- Quote from: bear60 on July 20, 2007, 07:20:45 PM ---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.

--- End quote ---

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.

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 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.


--- Quote from: bear60 on July 23, 2007, 01:04:06 PM ---Do you have the English and Western European ancestors as well..? Or is the story about surviving the plague all a bunch of stuff.

--- End quote ---

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.

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.


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.

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.


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.



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