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Recent Posts

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Research News & Studies / Re: Gene Surgery at Temple U
« Last post by tryingtostay on Yesterday at 11:52:51 AM »
Here's a more optimistic article:


"Khalili admits further work must to be done in order to make the technique suitable for testing on human subjects, however he is confident that the eradication of HIV and AIDS may be possible with this new treatment."

I sure hope that this CRISPR thing recognizes *only* HIV.  Wouldn't want this thing inside you cutting up the wrong genes accidentally.

Yup.  I hope they would think of some kind of secondary fail safe method that would stop the thing from continuing.  Like something to mute or halt it if something goes wrong.  They should be developing that along side it's own creation.
Living With HIV / Re: Hospital ward notes
« Last post by Theyer on Yesterday at 11:51:44 AM »
I like it.  :) 

Michael, so glad you're on the mend.  I'll be comparing surgery stories with you soon.  Your's sounds awful and I hope you're back up to par soon.

take care and huge hugs buddy

That's the third thing I have read about us breaking bones I am off to search out details off what's happened to you , whatever it is all the best Greg mend well are you seeing neurology? Or are you awaiting surgery? I will go and look.
... pretty much sums this topic up for me


Philadelphia is all atwitter currently with news out of Temple University that researchers there have gotten a step closer to a so-called cure for HIV. Basically, medical researchers are doing their jobs. Being medical researchers, though, they need to gin up some interest and rationale for more funding, so they’ve decided to recklessly issue a statement so slippery you can’t exactly disagree with it: “This is one important step,” says Temple’s Dr. Kamel Khalili, “on the path toward a permanent cure for AIDS.”

Thanks to those four little letters — “cure” — many journalists who have no experience or strong understanding about HIV/AIDS are writing about HIV/AIDS and society is yet again unfurling the “MISSION ACCOMPLISHED” banner. HIV/AIDS is about to be over! Will the last the person out please shut off the lights? Thanks.

Most people are zooming by the fact that this Temple discovery has no relevance to people living today or even in the near future; the discovery is simply a “proof of concept” with a completely uncertain future use, particularly if it’s anything like past “steps on the path toward a permanent cure for AIDS.” More on that later.

In fact, because everyone HIV-negative, including the media, generally ignores HIV/AIDS, I’m now going to have to explain what HIV/AIDS actually is: HIV is a virus that attacks human immune system cells, called CD4 or “T-Cells,” and tells them to stop reproducing and, instead, produce HIV cells.

That’s all it does.

You can imagine what happens: Now producing a lot of HIV cells, instead of immune system CD4 cells, people with untreated HIV start getting sick easily and most eventually die of opportunistic infections like pneumonia. That’s what AIDS is: A likely fatal condition brought about by HIV. HIV is the virus, AIDS is the medical condition.

Here’s what you probably don’t know, though: There is no reason any HIV-positive Americans should develop AIDS today.

This development out of Temple is one important step toward a permanent cure for AIDS just like my taking my medication is also one important step on the path toward a permanent cure for AIDS. After all, my single pill taken once a day prevents me from developing AIDS. It also coincidentally prevents me from transmitting HIV to anyone else, too. My life expectancy is basically the same as though I were HIV-negative.

Still, there’s a huge implication in my proposed cure for AIDS: I first must know that I’m HIV-positive. Then, I must take my single pill, once a day precisely as described for the rest of my life and not miss or skip doses. This means I need to have uninterrupted healthcare access and pharmaceutical benefits even if I can’t afford them.

Here in Pennsylvania, we’ve done a pretty stellar job of doing this. After all, the program that helps HIV-positive people like me, the Special Pharmaceutical Benefits Program or SPBP, grants HIV-related medication and care for free to anyone making less than about $60,000 annually. We’re unlike most states in the nation in this regard: You don’t have to be on skid row to obtain free healthcare if you’re HIV-positive in Pennsylvania, because neutralizing HIV to where it doesn’t develop into AIDS saves lives and money in the long run for all Pennsylvanians.

I can’t transmit HIV to anyone else. I won’t develop AIDS. My quality of life is the same as an HIV-negative person's. I’m going to probably live as long as anyone else who smokes a pack of Camels a day. Yet, even these smart, and generous, policies aren’t enough if people don’t have proper opportunity or access to healthcare: Philadelphia’s Office of HIV Planning says that 18 percent of newly diagnosed HIV-positive folks aren’t linked up with treatment within 90 days of knowing they’re HIV-positive.

Nationwide, we have a serious problem getting people tested for HIV; and, if they’re HIV-positive, getting them into treatment and staying in treatment. The Centers for Disease Control and Prevention estimates that 16 percent of HIV-positive people in the United States don’t know they’re HIV-positive. So, they’re running around “just putting the tip in” not realizing what they’re potentially doing.

You can’t blame HIV-positive people, though, for systemic problems in America in terms of HIV stigma, which partly explains why people are afraid or won’t test for HIV; or poor healthcare access, which partly explains why people don’t get tested for HIV and why, if they’re HIV-positive, they might develop AIDS.

Still, explaining all that isn’t sexy or interesting like my running around Philly saying, “I’m taking an important step toward the cure for HIV/AIDS!” Nobody’s really interested in a long-winded explanation or verbal gymnastics to rationalize their nonsensical “cure” language. So, we’d rather condense 50 qualifying facts and put them into four little letters: “Cure.” It’s a needless, and unfortunate, distraction from our society’s ability to stop AIDS today.

Cure language is reckless because now we’re all jumping to conclusions, ignoring reality and history. Yet again, everyone has decided that HIV/AIDS is going to be over soon, and they’re ready to move on to more pleasant things. That’s pretty much the 30-year history of HIV/AIDS in a nutshell.

Don’t believe me? Let’s take a look at the historical record.

In 1984, US Secretary of Health and Human Services Margaret Heckler said to the press, “We hope to have a vaccine [for HIV/AIDS] ready for testing in about two years.” Heckler, too, was starry-eyed about man’s taming the universe, rightly surmising that back then we were at the pinnacle of scientific progress. “Yet another terrible disease is about to yield to patience, persistence, and outright genius.”

Outright genius, indeed. Heckler wasn’t entirely wrong: In terms of human history, in 1984, that year was the apex of scientific progress, just like how in 2014, this year is the pinnacle of human scientific progress. In fact, if we ever have a day in which we’re stepping backward scientifically, we’ve probably got some serious problems as a society.

We all watched with rapt attention last year with cure language, too. “Mississippi Baby Born with HIV ‘Functionally Cured,’ Doctors Say,” read the headline on ABC News. The story exploded, and we started unfurling the “MISSION ACCOMPLISHED” banner again. This was a bit premature: The baby wasn’t “functionally cured.” Turns out that she’s now HIV-positive, but you probably didn’t hear about that.

How about Timothy Ray Brown aka the “Berlin Patient” who was “cured” of HIV/AIDS last decade with an astronomically costly and dangerous stem cell procedure? The entire scientific community agrees that it’s, at best, impractical for everyone else who isn’t Timothy Ray Brown and, at worst, fatal for most 7 billion human beings walking planet earth.

So, everyone, really, stop unfurling the “MISSION ACCOMPLISHED” banner. Cures are nice just like dreaming about flying cars is nice. But, unless George Jetson is driving my ass around Center City, I think I’ll focus on walking and riding SEPTA.

More to the point: I have no interest in “cures” because we already have a way to eradicate HIV/AIDS in this country, and we’re simply choosing not to do it because of politics. Instead of making the hard decisions that would allow us to stop this virus from affecting more lives, we’d rather wistfully dream about fantasies that never come to fruition.

If we were actually serious in this country about ending AIDS and preventing HIV, we’d have a national effort guaranteeing unfettered access to healthcare services and medication for those people living with HIV. More importantly, we’d make it easy to obtain these services as it is in Pennsylvania. We have the ability to do it, but because of conservative nonsense about “starving the government beast,” it’s politically impossible.

So, as a society, our collective daydreaming is much more fun than our getting to work solving problems.
Living With HIV / Re: Hospital ward notes
« Last post by wolfter on Yesterday at 11:29:48 AM »
Its good to have you back posting . I am having to make a list of who has broke what so I can keep it all straight . Im trying to figure out how to make the song I fall to pieces play when someone reads a post by a LTS .

I like it.  :) 

Michael, so glad you're on the mend.  I'll be comparing surgery stories with you soon.  Your's sounds awful and I hope you're back up to par soon.

take care and huge hugs buddy
Living With HIV / Re: help with meds co-payment in Latin America
« Last post by Valmont on Yesterday at 11:28:26 AM »

Which meds are you taking?  With some more info, you may receive more answers... 

In Ecuador, it is possible to get Viraday (eq. Atripla) with a doctor document by your own.  If I remember well it may be around US 268 for 30 pills.  I used to do it by mail, sending them the deposite by email and the medecine arrived at home with the invoice.  The company is EKSE GROUP, they are also in Chile and may help you.  My doctor in Quito gave me the data, in Ecuador, they were really very professionnal...

You should contact them directly...

Call them before...

Good luck
Off Topic Forum / Re: Yankees are coming .
« Last post by wolfter on Yesterday at 11:25:16 AM »
Zach, my brother and I built a log cabin fort when we quite young (around 10 or 11).  We dragged all the dead trees to a clearing in the woods and went to work on them.  We had that thing for many years and even built onto through the years.  We managed to drag an old mattress out there so we could sleep out.  I cringe at that now....lol

It has probably been 25 years since I been out there and should make a trek some day to see if it remains. 

We also dug our own pond but that was an epic failure.  We were smart enough to put it in the middle of a marshy area as it held water just fine.  We spent many hours in the crick capturing fish to stock our pond.  They all died!!!!

Another article from today's SFGate talking about the Sangamo and Calimmune stem cell trials and their potential to effect a functional cure.


Stem cell therapy could lead to HIV cure
Erin Allday
Published 5:02 am, Wednesday, July 23, 2014

Two teams of scientists with strong ties to the Bay Area are racing to develop a stem cell therapy that would provide a practical cure for people living with HIV infection, leaving them with an immune system capable of keeping them healthy without daily medication even as some virus remains circulating in their bloodstream.

Both groups of researchers are trying to capitalize on the DNA of so-called elite controllers - people who are naturally resistant to HIV due to a genetic mutation that prevents the virus from latching on to their immune cells. It was an elite controller who donated bone marrow to Timothy Brown, the "Berlin patient," who was the first in the world to be cured of HIV. Doctors attribute Brown's rebuilt HIV-resistant immune system to the genetic mutation in the bone marrow.

Bone marrow transplants are not an effective cure for HIV for the general population because they're risky and expensive. But stem cells, drawn from a patient's own bone marrow and altered to be HIV-resistant, may be able to do the job using the same premise.

"If you could make a person's immune system mutated in a way that HIV could not infect it, then you may be able to cure the HIV," said Dr. John Zaia, a virologist with the Beckman Research Institute near Los Angeles, who's working with Sangamo Biosciences in Richmond on a technique to engineer and transplant stem cells. "That's the premise anyway," he said. "And it's based on that one case in the Berlin, that one transplant."

The teams at the forefront of stem cell HIV therapy are led by Sangamo and Calimmune, a San Diego company that is testing its treatment in patients in Los Angeles and San Francisco.

Calimmune was the first to start human clinical trials, in July 2013, and last month reported that the first group of patients was doing well enough that they were ready to begin treating a second group. Sangamo expects to start clinical trials as early as this fall.

Both groups are being funded in part by the California Institute for Regenerative Medicine, the state's stem cell agency.

The research is based on the discovery in the mid-1990s of a specific genetic mutation that blocks a protein called CCR5. The protein is found on the surface of some cells where it acts as a receptor, allowing HIV to attach and ultimately fuse with the cell. Without CCR5, it's much more difficult, although not impossible, for the virus to infect a cell.

Genetic mutation

In elite controllers, the CCR5 receptor is mutated in such a way that HIV cannot latch onto it. Scientists believe that only about 1 percent of people worldwide have the CCR5 genetic mutation.

Nearly 10 years ago, when Timothy Brown needed a bone marrow transplant to treat his newly diagnosed leukemia, his doctor in Berlin decided to attempt an experiment, and chose a donor who was known to be an elite controller.

Bone marrow contains stem cells that stay active during a person's lifetime, constantly replenishing the cells that make up their blood and immune system. In a bone marrow transplant, stem cells from the donor replace the patient's own stem cells and build a new immune system.

Brown had been HIV-positive since about 1995, and his doctor wondered if replacing his immune system with cells from a donor who was naturally resistant would kill the virus and cure the leukemia at the same time. It worked.

But bone marrow transplants are risky procedures - patients can die from rejection of the donor cells or from infection while their immune system is rebuilt from scratch. They're also expensive and require lengthy recovery. And it's impractical to collect donor tissue only from the rare individuals who are elite controllers.

So bone marrow transplants aren't considered a worthwhile treatment for everyone who has HIV, especially since antiretroviral drugs are so effective.

Instead, scientists believe that they can draw stem cells from the bone marrow of patients infected with HIV, and genetically engineer those cells so that they have the mutated CCR5 receptor. Then, the same cells can be transplanted back into patients, where they will supply the immune system with cells that are HIV-resistant.

'Warrior cells'

"By actually treating the patient's own cells and giving them back, you're essentially helping to engineer an immune system that becomes long-term protective against HIV," said Dr. Louis Breton, chief executive of Calimmune. "The stem cells give the patient a group of highly protected warrior cells to do the job that we want our immune system to do, which is to kill off any disease and virus."

In theory, once the stem cells are implanted in the patients again, they'll be able to indefinitely replenish the immune system, and no further transplants or other treatments would be necessary.

Because scientists don't plan to destroy the patients' old immune system before transplanting the engineered stem cells, patients would continue to make cells that are vulnerable to HIV.

But the hope is that enough of the HIV-resistant cells will be produced that the body will be able to mount an immune response to fight the virus and keep it in check - providing what's called a "functional" cure, in which the virus remains but doesn't cause damage.

"Obviously eradication of all viral strains in the system would be extraordinary," Breton said. "This step we're taking is essentially a one-time treatment instead of lifetime."

The same premise could someday help scientists build a vaccine against HIV. But for now, the two teams of scientists are focused on a specific group of patients - those who aren't doing well on antiretroviral therapy and are at risk of their infection developing into AIDS.

The Sangamo and Calimmune teams have different strategies for engineering their stem cells and transplanting them back into patients. But the basic premise is the same, and the teams are nearly neck-and-neck in their research.

Calimmune was the first to put the stem cells into patients. Sangamo hasn't begun clinical trials with stem cells yet, but earlier this year it reported some success from a study involving transplanted T-cells - a type of immune cell that is destroyed by HIV. The T-cells were genetically engineered to resist HIV, using a technique that Sangamo will apply to stem cells in upcoming trials.

Scientists familiar with the research said they're encouraged both by the premise of the stem cell work and the results that have been produced so far. But even if both teams are successful, the treatment won't be practical on a global scale until it's made much simpler, said Dr. Warner Greene, director of the Gladstone Institute of Virology and Immunology in San Francisco.

Ideal therapy

Ideally, doctors would like to see a therapy in which patients are given a single injection that causes their stem cells to be re-engineered in the body, without having to be removed and treated in a lab. If the ongoing research proves successful in causing a functional cure, Greene said, the next step would be developing a procedure that's much more efficient.

"A lot of the stem cell work involves transplants. As proof of principle, that's great, but when it comes to treating tens of millions of people, it's just not going to work," Greene said. "We always have to have in mind a scalable solution. We must avoid therapies that are only useful to 100 rich people in the world."

San Francisco resident Michael Petrelis said he understands the need to remain wary of any promise of a cure - HIV is complicated, and there may never be a single treatment or therapy that works for everyone to wipe out the disease. But he said hope is something that helps keep him going.

"In addition to my AIDS cocktail, one of the things that's helped keep me alive is my hope for a cure," said Petrelis, 55, who has lived with HIV for more than a decade. "I'm optimistic that I can survive long enough to take advantage of stem cell research or something else.

"A lot of times, the researchers and even people with AIDS say we shouldn't use that 'C' word," he said. "And I'm of the thinking that yes, we should. We have to."
I had HL the first time I saw my Dr after Dx as well. Mine cleared up within the first 3 months of meds.

As far as Bactrim goes, my first Cd4 came back as 104, then dropped to 80, before I even saw my Dr his nurse called me to get me started on the bactrim to prevent pneumonia. I have to take it until I have 2 continuos results of Cd4 over 200. Unfortunately for me mine have dropped back down to 130. I guess I should have told you I started Truvada and Isentress in July 2013. He recently switched me off both the Truvada ( went to Epzicom) and the Bactrim (switched to Dapsone) as they both "can" depress Cd4 counts in Old Farts (53) like me!

I've been UD since October 2013 (from VL 104,000) but my Cd4's don't want to cooperate, but I did have a mild case of pneumonia in January. My Dr assures me that graphically my counts are improving percentage wise, so even though I'm freaking out about it, I trust my Dr implicitly!
Research News & Studies / Re: Gene Surgery at Temple U
« Last post by geobee on Yesterday at 11:18:05 AM »
Here's a more optimistic article:


"Khalili admits further work must to be done in order to make the technique suitable for testing on human subjects, however he is confident that the eradication of HIV and AIDS may be possible with this new treatment."

I sure hope that this CRISPR thing recognizes *only* HIV.  Wouldn't want this thing inside you cutting up the wrong genes accidentally.
I Just Tested Poz / Re: Newly positive
« Last post by wolfter on Yesterday at 11:16:17 AM »
You really need to have the results confirmed with a western blot confirmation.  You might be worrying needlessly.  If it does turn out to be a positive confirmation, there's no reason to think you can't still accomplish all your hopes and dreams.

take care and best wishes
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