POZ Community Forums
Main Forums => Living With HIV => Topic started by: John2038 on May 03, 2008, 12:13:32 pm
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Research
Since I know I am infected, I have raise question about putting into culture our own cells (cleaned and multiplied), doing blood transfusion and so.
Everybody told me, including Dr Gallant, that it just doesn't work.
The come the stems cells results, the OPAL, the VRX496 etc, showing the opposite.
Even my ID doc think there is an abuse there, and all the poz community just follows.
It's a shame.
My point is:
There are ways, simple, cost effective, without side effects that can extends the life of poz people without the use of toxic substances.
Could be either putting cells in culture and inject them back, blood transfusion (CCR5), etc all these directions must be investigated. It is still not the case 25 years after.
Doctors
For 5 doctors I have meet, only 1 was having an acceptable understanding of how to treat HIV.
One told me to take 3 PI, the others told me he always prescribe 1st line drugs no matter the genotype, the other told me a genotype should be made once resistant to drugs, not before, another was looking in his PALM the symptoms of the HIV, etc
Most doctor have no wishes to really extends life. They are not curious about HIV. They go home when it's time, that's it.
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huh? I don't get what you're trying to say.
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The point is that it clearly appears that after billions invested in the research, simple path are not seriously investigated.
And that most of the ID docs are incompetent treating HIV.
Tell me why traces of lentiviral vectors are still detectable in the blood 3 years after a single injection, and why those cells reinjected without this lentiviral vector but with CD4 having only CCR5 receptors won't work at least for few months or years ?
Explain me why a blood transfusion should work just few days (Dr Gallant) if it take a year to loose 40-100 CD4 ?
I would like the research to investigate such direction, and all others that my skills make me unable to mention, and I would like the Doc to know more than us about HIV, at least a majority of us.
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thank goodness for my "incompetent" doctor. he helped save my life.
and there's all sorts of mysteries about why things do and don't work in the body. science is riddled with such unanswered questions. it doesn't point to incompetency or lack of caring on the parts of medical practitioners or researchers.
i still don't follow this thread.
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Ohh, again my english I guess. Another shame, I know.
So to be short: Why it has take 25 years to discover that stems cells might work ?
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Ohh, again my english I guess. Another shame, I know.
So to be short: Why it has take 25 years to discover that stems cells might work ?
Who knows? To this day, no one knows precisely how plant photosynthesis works or exactly how it goes down when sperm meets egg. Or how exactly to cure a cold. A lot of life is just a mystery and may never be fully solved. It doesn't point to incompetence.
Ask your new girlfriend, why not?
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And that most of the ID docs are incompetent treating HIV.
And as someone not on HIV meds you know this how exactly?
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Explain me why a blood transfusion should work just few days (Dr Gallant) if it take a year to loose 40-100 CD4 ?
I believe it's because only a small percentage of HIV is in the peripheral blood. When your viral load is undetectable, it means only that it's not in the peripheral blood; however, it's still in a lot of other places. If that weren't so, a viral load declared undetectable via the standard peripheral-blood test would equal a cure. Most of the body's immune system, 70%, is in the gut, and HIV is still there when it's not found in the blood. HIV also hides out in the brain and in lymph nodes.
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Common thunder34, as someone not on meds, I have read a lot. My doc himself is not on meds.
Yet another one who just follow the others.
Note:
Ohh, about my gf:
I told her already: you are not my doc. We won't talk about HIV. It's not the root of our relationships. Point.
But on this very specific subject (we have talk HIV at the very beginning of our relationship), she told me to think that it's like with the tobaccos companies. Initially, smoking was not life threatening, and everybody has follows, until the truth have been published.
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I believe it's because only a small percentage of HIV is in the peripheral blood. When your viral load is undetectable, it means only that it's not in the peripheral blood; however, it's still in a lot of other places. If that weren't so, a viral load declared undetectable via the standard peripheral-blood test would equal a cure. Most of the body's immune system, 70%, is in the gut, and HIV is still there when it's not found in the blood. HIV also hides out in the brain and in lymph nodes.
It doesn't explains then the outcome Phase I of the VRX496 trial (lentiviral vector still detectable 3 years after), neither the outcome of the stems cells.
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It's probably a wise idea not to discuss HIV with this woman as I'm sure she'd go insane.
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Not cause becoming insane, just to preserve our relationships and cause talking about it would create a patient-doc relationships.
I'm also the man I use to be before having the virus, and she can have a normal relationships with me until the D-day.
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Common thunder34, as someone not on meds, I have read a lot. My doc himself is not on meds.
Yet another one who just follow the others.
Pardon me?
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Pardon me?
Not my intent to shoot.
But the question is not:
Who knows? To this day, no one knows precisely how plant photosynthesis works or exactly how it goes down when sperm meets egg. Or how exactly to cure a cold. A lot of life is just a mystery and may never be fully solved. It doesn't point to incompetence.
It is: why the research is not considering the paths mentioned above ?
Ohh, I know, the famous recurrent question.. (http://forums.poz.com/index.php?topic=16141.0)
..the pharma business is just to create drugs..
But after the publication of the OPAL study (http://forums.poz.com/index.php?topic=20640.0) , I'm just getting more and more upset, as I was after the phase I results of the VRX496 or the stems cells.
Even me, a newbie, have raise those basics questions, as many others I guess, but none of us have get back convincing answers.
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John, don't be offended by what I'm going to say, but I've seen this pattern over and over in all of my years dealing with HIV.
A small number (or not so small) of newly diagnosed people assert their need to "control" their viral infection (meaning control mentally) by overdosing on scientific information on the internet (which let's face it can be all over the place) and attempting to reformulate 25 years of HIV research techniques. Do you honestly think you know more than the scientific community on how to approach all of this? It's a bit odd, honestly.
Think about it. Maybe some psychological counseling would be helpful? Do you have access to that?
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I appreciate your comments (why should you be wrong ?) but I am convinced that it did not apply to me.
You just haven't give your opinion on why simple paths (stems cells / OPAL) haven't been investigated much earlier ?
Ohh, and the hazard is also that the people behind studies stems cells / OPAL are resp. a Doc and a university.
Not a pharma company.
Donations have been made from all around the world to finance the research.
Myself, a newbie in such research, have raise such question few days after knowing my status.
Why not Dr/Pr in biology ? But that is not the question.
Just upset that such results have take 25 years to start to be published.
I do not see also a rush regarding the stems cells. Just few articles, no more.
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k
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why simple paths (stems cells / OPAL) haven't been investigated much earlier ?
I'd say its either 1) there is a global conspiracy involving millions of people, 2) there is a global stupidity where no one besides you ever thought of this, or 3) you do not have a comprehensive, lettered understanding of the history of HIV research
You should contact the UCLA and let them know that they are doing their stem cell research too slowly and give them some pointers on how they can speed things up: http://www.uclaaidsinstitute.org/about/leadership_mitsuyasu.php
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aarf Darwin, you just turn around, no more.
You do not realize that multi-billions have been invested in HIV since 25 years.
It is what it has cost to finally try a simple CCR5 blood transfusion or re-inject healthy CD4.
But ohh, for you, it's normal. Good boy.
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You're right, its all so simple. Just a simple CCR5 blood transfusion. Thank you for finding the cure to the global AIDS epidemic, John2038. We can finally end all the work of those silly scientists/conspirators/buffoons.
Who knew - 25 years and billions of dollars later, all we needed to do was ask some random guy on an internet forum for the cure. It's just so simple!
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Please forget your argumentation, because it goes nowhere.
Stems cells, nor any others approach is actually the cure.
But 25 years for a Doctor and not a pharma to try to do a blood transfusion with CCR5 receptors only, it's a bit too much.
Especially because this approach make sense:
If the virus can't bind to such receptors, and if some people in this world only have these one, why not try to do a chemio and then a CCR5 blood transfusion ?
If the main target of the virus are the CD4, why not just invest money finding a way to replicate these CD4s, and get, could it be on a regular basis, a shoot of them ?
This 2 obvious questions are today our most promising ways to treat HIV (but the KP-1461 is promising as well), despite they are not a cure. Instead, we got toxic drugs that keep us drug dependent and infected.
And such drugs are much more complex to develop than doing just a blood transfusion.
Then come OPAL. What next ?
Note:
I am a stupid guy, I believe that as well. That's why maybe I can't understand what others do understand.
Really. So my apologize if it is the case.
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k
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I know I shouldn't, but here goes...........
Harvesting, growing and transfusing your own CD4 cells would be a) expensive, b) difficult and c) futile, because they don't tend to live very long in the peripheral blood (maybe a day or so). That is probably why there has been a rush to try it.
Transfusing someone else's cells is even more difficult and more expensive -- there are a whole host of proteins on these cells that could potentially turn the body against them - thus causing severe reactions. To be clear -- I've worked in blood banks, so I'm not speaking about things that I don't know -- although I've never attempted to harvest and grow lymphocytes.
Taking a study or two that may be looking at something doesn't mean it's a viable solution -- they are LEARNING things that maybe will lead them to others possibilities -- MAYBE. Honestly, do you think the entire scientific community is stupid and that you, alone, hold the key to solving the riddle of HIV?? Do you think that scientific minds haven't considered what you are ranting about here??
As for the billions of dollars that have been spent - do you think it's all been for naught?? Those billions have helped keep people like myself (and many, many others on these boards and elsewhere) alive. If you don't think so, compare the death rates in countries like the USA to others in sub-Saharan Africa and tell me the "toxic" meds don't work. Are they perfect? No. Is big Pharma a model to replicate? No - but I for one am glad that someone came up with these drugs to keep me going.
At the end of the day, it borders on insanity to think there is this giant conspiracy in the scientific community against making progress on HIV. Scientists are inquisitive people -- they want to know things and figure things out -- I'm sure no one would hold back on a breakthrough that would likely lead them to fame and, maybe, a Nobel Prize.
Take a breath and stop researching for a little while -- this level of angst is not good for your immune system. Seriously!
Mike
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bocker3,
I know that my argumentation seems to be either:
1- pharma conspiracy
2- no one have think to those paths so what, I am the best ?
But it's none of both.
It is:
1- Why CCR5 blood transfusion have not been much made earlier. So far, this multi-resistant patient with a leukemia who have been treated by this doctor in Germany is now undetectable and out of meds (CROI 08)
The question is: no matter if it was just due to luck, why such approach haven't been investigated much earlier ?
2- If you were right about harvesting, growing and transfusing our own CD4, then Virxsys should stop the development of the VRX496. Because this is exactly what they are doing (in more of adding their own vector).
3- Adding peptides (OPAL) sounds quite simple and promising.
Again, it "doesn't matter" if none of the technics above will work or not.
The question is why such approach are only investigated now, as they are much more obvious and simple than any others approach followed so far.
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Again...who knows? It could be, as stated earlier, that they know more about the big picture than you do. Or... sometimes people do just miss the obvious. It wouldn't be the first time such a thing has ever happened. Sometimes you can't see what's right in front of you until after you've looked at it for awhile or even stepped away from it for some time and come back to it.
I still don't see it as pointing to incompetence.
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incompetence is about docs.
Most of them (among those that I have met) are incompetent.
Maybe in the US/EU it's the opposite, maybe I have not been lucky, maybe I'm just just not in a position to "evaluate" them.
But most of the time, when I have cross check their arguments (as by asking to people such as Dr Gallant or on thebody.com), it has appears that they were just wrong.
Wrong while prescribing drug, mainly, or understanding how important a genotype is (and for one of them, arguing that no matter what says the genotype, he will always start with the 1st line drugs).
But this second part is very personal, I do not have meet enough of them to be in a position to generalize.
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I believe it's because only a small percentage of HIV is in the peripheral blood. When your viral load is undetectable, it means only that it's not in the peripheral blood; however, it's still in a lot of other places. If that weren't so, a viral load declared undetectable via the standard peripheral-blood test would equal a cure. Most of the body's immune system, 70%, is in the gut, and HIV is still there when it's not found in the blood. HIV also hides out in the brain and in lymph nodes.
I wanted to say something similar Edfu, but I'm feeling lazy today so I'll just quote you if you don't mind. ;)
Daniel
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I wanted to say something similar Edfu, but I'm feeling lazy today so I'll just quote you if you don't mind. ;)
Daniel
Again, why then the lentiviral vector still detectable 3 years after a single shot ?
It should have disappear from the blood 2 days after as well.
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Maybe in the US/EU it's the opposite, maybe I have not been lucky, maybe I'm just just not in a position to "evaluate" them.
I thought that you lived in the EU?
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I do, but I'm abroad since few months.
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thank goodness for my "incompetent" doctor. he helped save my life.
I personally have NOTHING to thank to my incompetent ID doctor... who knows?... perhaps later if i ever get to receive health care again.
My 5 cents are... yes, many Doctors are completely incompetent, i personally think there is a huge gap in the way information about how to fight the epidemy is spread around the world, plus there are lot of freak info floating around... Many countries does not put enough effort on training doctors about the last info discovered about aids and how to fight it. Same like meds, i don't know how long ago was lauched atripla in the US market... yet none knows about it here, not even doctors. So John2038 you have your point in that.
About the scientific argument, perhaps some of these options were checked in the past but perhaps the technology to go deeper in this was not developed in that moment, perhaps they didn't see it as promisory... i am sure there are million ways to fight aids... but they cannot follow them all... they have to bet... to follow the one that might help. I think for every research lauched with positive results, there are many others who were not published... or were left unfinished because funding constrains or many other things. That is impossible to know clearly.
I understand your anger, i have felt it too... but from our position there is few we can do. I have always though a hiv+ doctor should be the one looking for the cure... he would understand how CRUCIAL it is, or perhaps a positive doctor should handle the INH in my country, so they would understand the need of working 24/7 and do it fast. I have just found we don't have such profiles among us... eventhough with the time our profiles have evolved from knowing nothing about medicine to become highly educated on this topic without being doctors. Still with it... we don't have much scientifics among us... nor people on positions where they can make things happen. Perhaps that will take 25 years more... or a bit longer.
In the mean time, i would suggest to do something constructive with our ideas and motivation, don't discard your doubts, but try to join a network of activists or scientifics or a working group advocating in favor of more researches about new ways to fight aids, i think in those places you will find the info and perhaps de answer you are looking for... such networks offer you something these forum cannot.
Yet, thank you for challenge us to question ourselves about these things.
Juan Carlos... sometimes wishing he would be a doctor
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John, maybe before you beat researchers up over the lack of progress where stem cells are concerned, you might want to consider the political side of it and beat a few politicians up instead:
Stem cell research in the United States is inevitably connected with the politics of abortion.
http://www.nature.com/gt/journal/v9/n11/abs/3301744a.html
Some of the most exciting biomedical research of the 21st century isn't getting done. Research on stem cells from human embryos has become so entangled in politics and public misunderstanding that researchers are worried about serious delays in understanding life-threatening diseases.
http://www.genomenewsnetwork.org/articles/02_03/stem.shtml
And those are just two search engine results. Know your enemy John; it isn't the researchers.
Ann
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Ann,
I agree with you regarding stems cells.
I just remember to have read somewhere that human stem cells may be produced without embryos.
Was it this link, not sure.
http://www.timesonline.co.uk/tol/news/uk/science/article2080314.ece
But you give a good reason !
What about CCR5 transfusion ?
xyahka, you are too much good with me. :-* :-*
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John
May I ask, what are your current absolute CD4s, CD4% and Viral Load? I ask because ... well ... I'm curious. I've just had a brief look through your posting history and you don't seem to mention them anywhere.
You're fairly recently diagnosed and fairly recently infected. That much I do know. Thing is, when I was recently diagnosed, I did the same thing you are doing. (looking at research and drawing wild conclusions, but I didn't post about my "findings" anywhere, I kept them to myself)
I'm lucky enough to have an hiv doctor who is primarily an hiv pharmacologist. He told me to "chill out", in essence. And he was right. Our hiv database and treatments have changed drastically from when I was first diagnosed in 2001. The first line therapy I would have been started on, if I had insisted in 2001, is quite different to what my options are now in 2008.
You've got years ahead of you yet, John. Why the panic? Why do you want to point fingers at researchers and doctors who have been trying to help people like us? Instead of going after easy targets, why not go after politicians who are responsible for the underfunding of this pandemic? Money makes the world go round, whether we like it or not.
You seem to have a lot of energy. Why not put that energy into lobbying politicians instead of denigrating people who do actually want to find answers to the hiv question?
Hmm?
Ann
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Ann,
I believe that sometime, as it is the case with the stress, we don't see ourselves worrying (or stressing).
Is it the case now ? I do not feel to be under panic nor under stress, but it might be because such things must be detected by others than ourselves. Who knows ?
Actually, I feel to be thinking as the scientist I am supposed to be, (in a different field).
I might be wrong doing so as I am not enough skilled in bio.
My currents CD4, % and VL are in my signature.
Believe me or not, I do not fear at all to die. Not at all. Death is nothing for me. I have the faith.
Regarding my energy, and the possibility to invest it into lobbying politicians, it can happen.
I'm made to defend causes generally speaking, but I am not only poz, and a huge part of my energy is going into field related to my work.
Now I have things that I want to realize: in particular a software, pluggable, that would help to make a synthesis of the research. I'm thinking about it since I am poz, and hopes such tool could be useful.
I might start something on sourceforge, and if it is the case, I will talk about it probably her, maybe at the end of this year.
Otherwise Ann, as we are talking personal things, and with no reasons now, I just would like to let you know that I appreciate the work you are doing here, as well as your personality. I guess the one I'm feeling through your posts:
Calm, and the right words at the right time. Really. So :-*
Otherwise, I will think to your suggestion (investing energy into lobbying as well), but I will need to work on my argumentation and my English. Not that it will change the world, but isn't the sea made of drops of water ?
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Ann,
I agree with you regarding stems cells.
I just remember to have read somewhere that human stem cells may be produced without embryos.
Was it this link, not sure.
http://www.timesonline.co.uk/tol/news/uk/science/article2080314.ece
Jebus, get a dose of reality, John. That article isn't even a year old yet you're expecting results already?
You're in for a rude awakening if you expect HIV science to go that quickly.
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Ann,
I believe that sometime, as it is the case with the stress, we don't see ourselves worrying (or stressing).
It is the case now: I do not feel to be under panic nor stress but it might be because such things must be detected by others than ourselves. Who knows ?
Which is why 4 hours ago I recommended seeking counseling.
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Sorry to says so, but this is a typical American approach (nothing bad behind this argumentation pls trust me).
It doesn't means you are wrong at all, but so far, again, the counter arguments in this thread are not convincing me neither.
Now if I have good reasons to think that I am wrong, and if despite that, I continue to argue, then yes, I will see a psy.
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It's a typical European approach to be dismissive of their mental health issues. I'd rather not be in denial about such things when dealing with a chronic health issue on top of it.
In the meantime, absent of your willingness to address this issue, I'm quite tired of indulging you and your obsessive compulsive web board behavior.
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philly267
I am fine. Please find arguments that answers to the questions:
So far, many ID-HIV docs are incompetent, and xyahka have find better arguments than me to express this feeling.
For the research, in particular the stem cells, I have agree with Ann that she was right.
Now I am talking also about more trivial research, still not done after multi billions and 25 years.
For eg CCR5/CD4 transfusions or peptides.
But that's fine, I will most probably let this thread where it is now, and if I have still something to say to express my feeling, I will probably find better arguments (more scientific) and an other channel.
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Speaking as a scientist, I will keep this brief and simple in regards to your questions.
I think John2038 that you do not understand how science works, or how the mechanics of research work.
This would indeed create frustration as to why after only 25 years a "cure" hasn't been found.
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I am fine.
Sorry, but your posts point to a different reality.
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Speaking as a scientist, I will keep this brief and simple in regards to your questions.
I think John2038 that you do not understand how science works, or how the mechanics of research work.
This would indeed create frustration as to why after only 25 years a "cure" hasn't been found.
Ok, then just answer to these points:
http://forums.poz.com/index.php?topic=20652.msg265130#msg265130
I was ready to give up this thread, but I am a scientist too, so.
Again, the mosts promising treatments are the most obvious.
No answers so far, just vague arguments. Ohh, but maybe I am hit by the dementia ?
Will have it be the same if I was arguing that smoking kills 20 years ago ?
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Yeah, like his thread asking if the HIV virus makes everyone "horny"
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I was ready to give up this thread, but I am a scientist too, so.
Dare I ask what kind?
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I was ready to give up this thread, but I am a scientist too, so.
Hmmmm....... All can can say is that I have not worked with scientists who express the same concerns as you do.
It must be a very different science than I know.
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*
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Physics
philly267
so far, you haven't provide any answers, but unrelated arguments.
Are you fine ? Look your answers.
hartiepie
come on, what are you saying ? Are there guidelines followed by scientists describing how to express concerns ?
Why not just answer to the question ? That's will sound scientific to me.
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The protocols for health research are the same for physics.
I am not inclined to type out basic information on researching to another scientist. How lame is that?
Anyone wanting to know about these basics can do a Google search.
I suspect that you (unconsciously) are searching for someone to agree with your position because several people have already answered your queries, but you dismiss them.
Your frustration is palpable but unwarranted, IMO.
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Maybe Dr. Skull can help you John...
http://www.youtube.com/watch?v=oa7PbTY7clw
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The only scientific answer I have got was the one from edfu.
Now, I have reply to him why then Virxsys is not just stopping its reaseach with his lentiviral vector ?
All others replies was not an answers.
Note:
I do still not understand about which protocol we are talking here, or if I do, I do not see this point to be relevant in any ways.
But raising questions is the base of any research. Especially trivial questions.
The aim of this thread is not to be a scientific thread, I won't be able to argument with those skilled in bio.
But I will probably be able to appreciate why I am wrong thinking that obvious ideas are not being prioritized and investigated.
How CCR5 blood transfusion might have never been investigated by pharma ? Nor peptides.
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Research into VRX496 is continuing because of its potential as a novel way of controlling viral load IN THE PERIPHERAL BLOOD. It would replace HAART drugs. IT IS NOT A CURE. Forigve me for shouting, but.... And I'm not a professional scientist.
Gene therapy is a baby as far as research timelines go. It is so revolutionary, with so much potential for good in many different areas, yes, but MUCH is still UNKNOWN about its potential for great harm. One patient at Penn U. died from complications from a gene-therapy study unrelated to HIV in 1999. All gene-therapy studies were then placed under the most intense scrutiny by the governmental medical authorities in charge of protecting patients in research studies. Because of this it took Virxsys years to get approval for its VRX496 study. Putting new, unknown, novel therapies into the bodies of human beings is not like switching to a different brand of coffee.
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John, why do you bring your demands for research accountability to a support group?
Shouldn't you bring your demands to a politician? Or to a Big Pharma corporation? Why do you choose a support group? What are your strategic goals?
Do you do this with other support networks like AA or NA? How to you determine from which support groups you will demand research accountability, and which to avoid?
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John, why do you bring your demands for research accountability to a support group?
Shouldn't you bring your demands to a politician? Or to a Big Pharma corporation? Why do you choose a support group? What are your strategic goals?
Do you do this with other support networks like AA or NA? How to you determine from which support groups you will demand research accountability, and which to avoid?
Everyone of us is free to vent his own concerns/opinions in this forums. Some people vent about dating, politics, religion, why shouldn't he express his concerns and frustration about research accountability?. It is a topic of interest for many of us.
Juan Carlos
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How CCR5 blood transfusion might have never been investigated by pharma ?
John: put the mouse down and back away from the keyboard. I just looked at this thread fior the first time, and I was struck by your seemingly messianic bent in pursuing arguments for which you do not appear to have the scientifc grounding to take up. Give it a freakin' rest already!
I'm one of those people who has the delta-32 CCR5 mutation, and I wish it was just as simple as sucking some of my "defective" CD4s out and slamming them into another pozzie's veins to confer some measure of immunity, but it isn't. You'd have to eradicate that person's immune system at great expense for the procedure and their loss of productivity, then re-boot it with cells from mine that (1) would be assured of maturing with broken CCR5 and (2) not post a threat to the health of the recipient. Neither of those conditions is achievable at present, and we won't see "interpersonal CCR5 transfusions" as anywhere near practical for decades.
Some of us were protesting for expedited access to treatments 20 years ago, and we look back in the aftermath of mega-dose AZT, d-drugs, and protease inhibitors and wonder what the hell we were thinking as we see the complications of those meds played out in our brothers and sisters. Given those experiences, I'm not about to attempt to hasten access to treatments based on genetic manipulation -- what, so every HIVer can grow extra digits and extraneous genetalia as an unintended result?
Ann gave you two great suggestions: take care of yourself through counseling and turn your energy to the political system where it may be better purposed.
Namaste,
David
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Everyone of us is free to vent
Oh, he's just venting? Silly me, I thought he was opening a thread to make his case.
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John, as a physicist, you may be spending most of your time investigating string theory and black holes. I would humbly suggest you spend a few hours studying human biology, the life cycle of HIV, and the basic principles and difficulties of gene therapy and stem-cell implantation.
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So far my conclusion is:
obvious ideas are not being prioritized and investigated by pharma, but drugs are.
Only few universities are doing such investigations
Don't be blind
Dummy answers
redhotmuslbear : http://www.thebody.com/content/art45633.html?mtrk=7028234 So difficult that a single doc was able to try and get success
edfu: I'm anyway thinking to go back polytech.
darwin: check your numerous contribution, avatar. What u r saying is just applying to you
xyahka: i guess the perception they have is due to their star system.
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John, I have talked with a friend about CCR5 transplant treatments like you are thinking of. They could work if you could do a stem cell transplant from a CCR5 delta32 homozygous individual. For it to work, you would need to basically completely destroy your immune system and live in a bubble while you got a bone marrow transplant. It's not practical to do.
For now, there are the CCR5 inhibitors...
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John, I have talked with a friend about CCR5 transplant treatments like you are thinking of. They could work if you could do a stem cell transplant from a CCR5 delta32 homozygous individual. For it to work, you would need to basically completely destroy your immune system and live in a bubble while you got a bone marrow transplant. It's not practical to do.
For now, there are the CCR5 inhibitors...
As said last month here:
http://forums.poz.com/index.php?topic=19625.msg258433#msg258433
It's very frustrating that labs haven't investigate such possibilities [transfusion] further much earlier, especially since the the apparition of the Selzentry which have been well shown in studies the importance of the CCR5 receptor which [the Selzentry] blocks the receptor and slows HIV reproduction.
Research is mostly focusing on producing drugs, the Selzentry is an clear illustration.
Years of trials, but nothing really trying to do what this doc in Germany has done.
If we were now years after this single but successful transfusion, maybe we will have today a similar treatment widely available.
NOTE
DRUGS IN DEVELOPMENT
Entry Inhibitors (CCR5):
AMD887 (CCR5 blocker), Preclinical, Anormed
AMD3451 (CCR5-CXCR4 blocker), Preclinical, Anormed
Betulinic acid derivatives, Preclinical, University of North Carolina, Duke University, Vanderbilt University
Bifunctional CCR5 and CD4 inhibitors, Preclinical, University of Regensburg
CCR5mAb004 (CCR5 blocker), Phase I, Human Genome Sciences
GBV-C (chemokines, including CCR5 blockers), Preclinical, University of Iowa
HGS004 (CCR5 blocker, Phase I/II, Human Genome Sciences
HGS101 (CCR5 blocker), Preclinical, Human Genome Sciences
INCB9471 (CCR5 blocker), Phase I/II, Incyte
KD-247 (CCR5 blocker), Preclinical, Kumamoto University
Peptidic CCR5 blocker, Preclinical, Selexis
PF232798 (CCR5 blocker), Phase I, Pfizer
Pyrrolidine (CCR5 blocker), Preclinical, Merck
ROAb 12 (CCR5 blocker), Preclinical, Roche
ROAb 13 (CCR5 blocker), Preclinical, Roche
ROAb 14 (CCR5 blocker), Preclinical, Roche
ROAb 18 (CCR5 blocker), Preclinical, Roche
SCH-5327-6 (CCR5 blocker), Preclinical, Schering-Plough
TAK-220 (CCR5 blocker), Phase 1, Tobira (licensed from Takeda)
TAK-652 (CCR5 blocker), Phase I, Tobira (licensed from Takeda)
Vicriviroc (CCR5 blocker), Phase II, Schering-Plough
ZFN (CCR5 blocker), Preclinical, Sangamo Biosciences
Zing finger protein nucleases (CCR5 blockers), Preclinical, Sangamo Biosciences
Others drugs in development: http://forums.poz.com/index.php?topic=20441.msg262098#msg262098
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Some of us were protesting for expedited access to treatments 20 years ago, and we look back in the aftermath of mega-dose AZT, d-drugs, and protease inhibitors and wonder what the hell we were thinking
With all due respect, I know what me and my friends were thinking. We were thinking, we don't want to die. Our protesting did lead to expedited access, which in turn provided the drugs that extended and then saved our lives, side effects and all. How many more would have died if strict protocal had been observed and those drugs were delayed one to five more years? It's easy to use your argument now, when friends and loved ones are no longer dropping dead around you.
Sorry for hijacking John's meaningless thread, but I'm just amazed you said that.
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[
Some of us were protesting for expedited access to treatments 20 years ago, and we look back in the aftermath of mega-dose AZT, d-drugs, and protease inhibitors and wonder what the hell we were thinking as we see the complications of those meds played out in our brothers and sisters. Given those experiences, I'm not about to attempt to hasten access to treatments based on genetic manipulation -- what, so every HIVer can grow extra digits and extraneous genetalia as an unintended result?
Namaste,
David
Holy Crap Batman! I'm sorry David, but really.... I don't believe you thought this answer through.
This is really offensive.
Sharkie
(who is happy to be alive and dealing with those complications rather than being DEAD)
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Agreed. Philicia was up in NYC marching in her denim cut-offs and combat boots (glamor ACT-UP outfit). SRSLY -- redhotmusclebear, the two situations are not AT ALL comparable.
While I agree that the first generation meds, many of which are still being used, were not optimal, I'll be damn if I didn't go on them 2 years after marching in those demos and they kept me alive long enough until PI's came out.
I really don't understand where you're getting off with that line of thinking.
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John
No offense, but might your frustration be due in part to the wrong analogy? Medicine is not science and only recently has it even started to be practiced in anything remotely like a scientific way, primarily in the area of drug testing (evidence based medicine is not making very rapid progress in other areas). Instead one might think of medicine as being like engineering or like law, primarily practical, perhaps informed by theory but often subjective based on the cases in front of the doctor and that doctor's experience. And just as unexpected interaction in the physical environment means that elegant physical theories do not always work in engineering practice (e.g. the Tacoma Narrows bridge experience with wind sheer), so do elegant biological theories not always work in practice either. Even once a theory has been adapted to practice, it will be a while before it is universally adopted, as it slowly wins out over competing practices. That's the downside of having medicine performed by someone who is trying to evaluate the whole patient -- the doctor's subjective experience makes them reluctant to move from things that have worked to things that may.
We've just made an enormous investment in basic science with the human genome project -- fundamental new understandings of how chemical processes affect cellular processes are coming out of that and generating a wave of applied science work. However, moving from applied science to technology to adoption is a long path ahead.
Honoring the brave and desperate young men who demanded the opportunity to offer themselves as test subjects for potential treatments to accelerate adoption in the past when there were no effective treatments is important. But one shouldn't assume that the accelerated testing and adoption that happened in desperate times will translate to the current moment when there are known treatments for most of those infected and the biggest problem is getting those treatments to them (particularly in Africa).
I think we should honor those researchers and doctors and patient volunteers who are working hard to advance treatments.
Regards
Assurbanipal
Note, it can be difficult (for me) to get the words right on these forums. Apologies if this comes across as cold, lukewarm or other than intended.
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Don't be blind Dummy answers
Yup, just keep on calling us blind dummies, and degrading the competence of HIV researchers... keep on, John, just let it all out. As xyahka said, people should be free to say such things without criticism.
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Assurbanipal
I like your comment and I totally agree with it if we talk about medicine.
Now no matter if this science is more empirical than theoretical, it is the responsibility (as it is ours) to ensure that the treatment this latter is offering is the best.
The guidelines are evolving, and almost monthly, there are new studies confronting different combos against each others, etc.
It is well known, and every practitioner should have that in mind.
To be able to deal with, they have to read on regular basis, and consult each others.
I guess that this homework is not done in most case. As I did it, I was able to save myself I guess. This is from where I feel upset.
Now during my studies, some of our courses (especially Analysis and Algebra) where common between both section (physics/biology) the 2 first years.
As such, the mathematics play an important part in this science, and all the models use to describe the interactions between a drugs and the body are mathematical models.
It happen of course that the practical results are different than the theoretical one, much more often than it happen in physics (almost never now if we talk about rocket science -with exceptions, but often when we try to modelize the universe at its beginning).
When a model fails, it is either that the initials conditions are wrong, or just the theory or just both.
Biology is an exact science, but the body is far too complex to be modelized so most of time (I guess) the model give more informative results (let say direction) that accurate values.
The reasons are the same than in physics, but physics is probably much simpler.
So yes, a good part of the biology is more empirical than based on mathematic formula (or biochemistry).
So yes, it is not like sending a rocket in the space, and yes, the prediction we can make in physics can't be compared to those we can make in biology.
As such, thinking as a physicist to the biology is probably wrong.
But my argument (extremely badly presented here - and I continue) is not this one.
It is to say:
Ok, we should inhibit the CCR5 receptors, because we know that it play a major role in the propagation of the virus.
Now what are the different paths that we can investigate to block this receptor ?
1 - Develop a drug (entry inhibitors) - DRUGS DEV
2- Perform a blood transfusion on people having to do a chimio - EXPERIMENTAL
3- ....
I m caricaturing for sure.
Instead of that, just the point 1 is investigated.
The same happen with the CD4
We develop drugs to block virus replication, but we do not try either to help the body to identify the virus and fight him, nor to try to replace the CD4 we are loosing.
Or yes, we are doing so, but this effort is made by the universties or the doctors themselves.
But when we (DONATIONS) are investing money in the research, it is not only to help to develop drugs (fundamental research), but also to try all the different possibilities we may have.
The truth seems to be that :
- The fundamental research is too poor actually
- All the experimental approach happen almost always by hazard
- A huge proportion of the effort is invested in developing drugs blocking the virus replication in one of its 4 reproduction phase
What have upset me is the OPAL outcome.
I was upset already before, but yet another study, simple, non part of a drug research that seems to be effective.
Another thing that upset me is that there is no rush to investigate the stems cells, nor an effort made to maintain the population of our CD4 in another way than with drugs (but transfusion, markers or whatever else).
All these alternative paths have in common:
- little or no side effects
- quicker to produce compared to drugs
- based on simple idea that make sense
- are the most promising
- are more cost-effective than drugs to test
etc.
To summarize, what I would like to see is a big chart summarizing all the different directions the research should consider, including the fundamental research and creation of new equipments.
Then prioritize the different actions and work on them
If the money come from all the world, what is made with is just favorising the pharma, not the patient.
I won't re-read me as I have to go.
darwin
dummy answers are mine..
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nor to try to replace the CD4 we are loosing.
Actually -- the drugs we take knock back the virus, thus enabling OUR OWN BODIES to replace the CD4s were have lost -- now, we do loose some memory cells forever, but you aren't going to be able to transfuse those in anyway.
Another thing that upset me is that there is no rush to investigate the stems cells, nor an effort made to maintain the population of our CD4 in another way than with drugs (but transfusion, markers or whatever else).
Again -- it is not the drugs that maintain (or rebuild) our CD4 population -- it is our own body that does this, because the virus has been knocked way down in our peripheral blood by the drugs you seem to rail against.
You seem to be missing a very important point when one is doing research on viruses and on people. Genetics play a big role. A study that shows promise based on one patient is extremely suspect as it may be that person's genetic makeup or their virus' genetic make up or an interaction between the two. All people and everyone's HIV is not the same. HIV has an uncanny ability to mutate, again making "cures" difficult.
Additionally, just because you don't read that anyone has tried experiments earlier, doesn't mean they were NOT tried. It is possible that they were tried and were such abysmal failures that no bothered to write them up for publication.
Your passion is admirable, but you seem blind to any arguments that don't agree with your position. You have dismissed many people's responses as "not answering" your questions. In fact, there have been a number of answers that have been stated in generalities that you seem unable to pull into your listed scenarios.
Your new to HIV -- start acting like it. Learn about it, learn to live in peace with it, stop finding about everything that is "bad" and focus, also, on some of the good. You may not need these "toxic" drugs right now (or for a very long time), but your argument that billions have been wasted in the wrong areas is, frankly, pissing me off. These drugs are keeping me alive -- I don't want them to divert all the $$ from developing drugs to looking at every possible "cure" scenario, because then people will die. They should be doing both -- I'll agree with that -- but you seem hellbent on castigating all the Pharma companies for developing drugs. Think about it!
Mike
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bocker3
Two examples of non-drugs approach:
OPAL
New 'OPAL Therapy' presents simple, cost-effective method of treating HIV infection
Australian researchers have unveiled a new immunotherapy technique to help prevent the progression from HIV infection to AIDS. Details of the simple, cost-effective technique are published May 2nd in the open-access journal PLoS Pathogens.
There is an overwhelming need for effective immunotherapies for HIV, as current therapies are expensive, impractical, and often highly toxic. The authors, led by Professor Stephen Kent, propose a technique named OPAL therapy—Overlapping Peptide-pulsed Autologous CeLls—a reinfusion of fresh blood cells incubating with overlapping SIV peptides. The OPAL technique was successfully tested in animal trials for stimulation of immunity, control of virus levels, and prevention of AIDS.
Vaccination diminished the levels of virus 10-fold lower than in controls, and was shown to be durable for over one year past initial vaccination. Therefore, viral replication was shown to be prolonged and more manageable, resulting in fewer deaths from AIDS.
http://forums.poz.com/index.php?topic=20640.msg264897#msg264897
Stem Cells
For the last three years, Project Inform has spearheaded a renewed call for research that seeks to find a real cure for HIV disease, rather than settling for lifetime
maintenance therapy on drugs. A case study from the Medical University of Berlin reported at CROI 2008 offered intriguing results from a stem cell transplant.
..
A person who had been living with HIV since 1995 underwent treatment with stem cells for a relapse of acute myeloid leukemia, a cancerous growth of a type of white blood cell. Since the patient was HIV-positive, researchers sought out a stem cell donor whose cells lacked the CCR5 receptor that HIV commonly uses to get into immune cells.
Researchers stopped the patient's HIV regimen at the day of the stem cell transplant and have not restarted it. Ongoing studies 145 days after the transplant showed that the patient's mucosal CD4+ cells now lack the CCR5 receptor. More importantly, starting 61 days after the transplant, the patient's HIV level fell below the limit of detection and has remained undetectable since then. Similarly, they can no longer find evidence of pro-viral DNA in peripheral blood, bone marrow or rectal mucosa.
Pro-viral DNA is HIV genetic information that has been incorporated into a cell's own DNA, and is capable of producing new virus. These tests remain negative out to nearly 300 days (285 days as of CROI), despite the absence of any HIV drug treatment since the stem cell transplant. Before the transplant, the patient required a normal 3-drug regimen.
http://www.thebody.com/content/art45633.html?mtrk=7028234
Drugs are useful for sure.
But if in parallel, the non-drugs paths have been investigated much earlier, we maybe won't need drugs.
Or we will, but combined with these others direction that a providing great results, are available faster, and are cost effective.
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http://www.sounddogs.com/previews/2107/mp3/320890_SOUNDDOGS_CH.mp3
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John
Since you appear to be focused on these two items, let's look at each:
1) OPAL is still in the theory stage. The reported results are based on animal tests and SIV not HIV. There's many differences between SIV and HIV not the least of which are fatality rates.
So is it promising? Maybe. If one were graphing out options would this be a potential major diversion of resource dollars? Perhaps, but perhaps not.
2) Stem cell transplants. Redhotmusclebear mentioned the downside with this, but in a somewhat oblique way so let's be clear. To do a stem cell transplant with today's technology you first kill off the patient's existing stem cells, either through harsh chemo or by very high dose radiation. This is a highly risky procedure that was the subject of considerable debate as to whether it should be used in the cancer arena. It sometimes kills the patient -- wikipedia cites an unsourced "over 10% mortality rate" My vague recollection was higher, but perhaps that was old data.
____________________________
Its great to hear about new treatments; that's one of the reasons we are here. But right now, the best science on avoiding death and disease from AIDS all points to starting HAART well before you reach the thresholds for most OIs and on staying fit. Its not surprising that the majority of research dollars are trying to make that which currently works better.
Regards
A
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http://www.sounddogs.com/previews/2107/mp3/320890_SOUNDDOGS_CH.mp3
Far less irritating, I'd say. This thread makes me think of this (since it's like arguing with a brick wall):
http://www.youtube.com/watch?v=hfA7i6SJvOw&feature=related (http://www.youtube.com/watch?v=hfA7i6SJvOw&feature=related)
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Assurbanipal
reading you and others, yes, I feel finally less upset :)
But I'm still convinced that all the effort must not go to the drug development only but follows all the others possible paths as well.
The fact that OPAL or stem cells are new or not practical is one things., cause so was the drugs before as well.
What will have become these 2 technics above (and all others we haven't investigate) if they were investigated in the 90s ?
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Some of us were protesting for expedited access to treatments 20 years ago, and we look back in the aftermath of mega-dose AZT, d-drugs, and protease inhibitors and wonder what the hell we were thinking as we see the complications of those meds played out in our brothers and sisters. Given those experiences, I'm not about to attempt to hasten access to treatments based on genetic manipulation -- what, so every HIVer can grow extra digits and extraneous genetalia as an unintended result?
I was thinking "I want to live past 24." Thank god for those meds, no matter what the side effects were. That's why many of us are still alive.
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Drugs are useful for sure.
But if in parallel, the non-drugs paths have been investigated much earlier, we maybe won't need drugs.
Or we will, but combined with these others direction that a providing great results, are available faster, and are cost effective.
I do not recall reading a single entry to this thread that said we shouldn't be looking at both drugs and other avenues. What people have been reacting to are, for the most part, two things:
1 - your ad nauseum complaint that current investigations didn't start earlier.
2 - your unwillingness to consider any opinion different from yours
so -- as to No. 1. No one will ever know "why" something isn't looked into before it is -- of course we don't even know that your 2 areas haven't been looked into -- only that there seems to be a lack of published info stating so. Remember, people don't know what they don't know. Your argument could just as easy be sent back to the 1980's -- "why didn't we start looking at Protease as a possible way to attack HIV. We did we wait for the mid-90's? And I must, again, point out that your stem cell point is all about a single patient -- genes play a role in all of our lives -- and this patient may have hit the genetic jackpot. The fact remains that destroying someone's immune system ON PURPOSE is a highly risky approach. Sort of like try to push a thumbtack in with a sledge hammer. People do die from this -- I also seem to remember it being a higher than 10% fatality rate -- especially when using non-family member donors (and if you don't have CCR5 negative t-cells, it's likely that your siblings don't either). Do I think they should stop investigating this -- absolutely not -- you often learn things your didn't plan on learning, so let's go forward. However, what is your point in going on and on about the timing? Why should a DRUG company spend it's money on NON-DRUG interventions - that would be like taking Frito-Lay to task for not exploring ways to make coal burning less polluting? This exploration sounds like something for the academics and government scientists to look into (so, back to Ann's suggestion of aiming your wrath at the politicians).
No. 2 -- well, you never did address my point about the body replenishing its own CD4s -- not the drugs. Even with a bone marrow transplant -- it would only be successful if the individual's body accepts the graft and incorporates into itself. You also never addressed the fact that OPAL isn't evening using HIV, but SIV. There have been other things that looked very promising in animals (i.e. SIV) but didn't translate into success for HIV.
So, to close -- we should all want science to look at non-drug approaches -- but I simply don't understand your level of anger over why things didn't happen sooner. If it's happening now, YEAH!! Hopefully something really useful will come out of it - but I, for one, can't imagine risking a bone marrow transplant on myself in the name of a Clinical Trial. Certainly not when I have drugs to take that don't appear to have the same fatality rating.
Mike
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bocker3
I do understand your arguments, and I'm also able to think as you do.
But finally, on what are based your arguments ?
On your personal conviction, which basically is:
We are doing our best, and any non-drugs approach can't have been discovered earlier
My conviction is:
We are doing our best to develop drugs, others path are quasi neglected.
Much more time and money must be invested in others directions, not just drugs.
Drugs are indispensable today because this is where most of the effort have been made, so they have become our only solution.
And this drugs prioritization is delaying others important paths/discoveries, such as those in the fundamental research:
it's only very recently that we have established a draft list of 273 new human proteins that, if blocked, keep the AIDS virus from multiplying and spreading through the human body
http://www.nytimes.com/2008/01/11/science/11hiv.html
In conclusion, we are just expressing our convictions, but none of us have proof. But isn't diversity better ?
Drugs in not the only way, this is my conclusion, and not enough effort is made to investigate these others ways, including the fundamental research and the instrumentation.
Stem cells and OPAL were just an illustration of what we could have potentially miss or discover earlier. Just an illustration and not the illustration, because what we have miss, I don't know, we haven't search.
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John,
Are you willing to put your money where your mouth is and volunteer to be a guinea pig for stem cell experimentation? Wonder if they'll let you have a computer in the bubble they'll have to put you in after they destroy your immune system.
Ann
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John, I now think you may be making a valid criticism, but you are doing so in a completely indirect manner and not stating it straightforwardly.
It's this: Historically, in AIDS research, there was a battle between virologists and immunologists about which field should take precedence. The virologists said: Attack the virus directly. "It's the virus, stupid!" The immunologists said: No, help the HIV-infected patient's own immune system control the virus and also do something to restore the already damaged immune system.
The virologists won the battle when Dr. David Ho and others discovered drugs that damaged HIV's ability to replicate: HAART. Most of the research money went to the virologists. Very little research money was granted to those working to optimize innate immunology. Immune-based therapy approaches indeed remain second-class citizens in the world of HIV research.
Project Inform in San Francisco and TAG (Treatment Action Group) in New York are two activist organizations that have worked to promote the immunology approach while simultaneously promoting the virological approach. Both are needed. Both organizations sponsored meetings and roundtables about immunology therapy. HAART was saving so many lives, however, that the promotion of immunology as a necessary and valid approach never achieved widespread approval and vital research monies from a limited NIH research budget.
In that sense, therefore, I think it might be true to state that there are many lost opportunities in the endeavor to defeat HIV. Which is not to say, in any event, that pharmaceutical drugs (which you seem to feel is a dirty word) might not be the method by which immune systems themselves can be brought to kill HIV.
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John,
I did agree with you that we should be looking at both -- I think that I've said that in every post I've made. Much of what I said is my "personal conviction" based on things that I know (i.e. wiping out an immune system is a very risky proposition). I may know little about physics, but I have 2 degrees relating to the medical field and Public Health, so I'm not speaking about stuff of which I know nothing. When you start moving things into human trials, it is, generally, going to be easier to get a drug based therapy that attacks an unwanted virus approved than it will be to start tinkering with the host's own immune system (and I'm not just talking about bone marrow transplants here). Why? Most likely due to the increased danger in tinkering with the host vs. the infectious agent. Therefore, it makes perfect sense to me that the virology path was the first one attacked. Why? Because now we have effective treatment to keep people alive while the immunology path is attacked with a bit more vigor. Although, getting human trials approved is still likely to be a trickier step and, therefore, something that is going to increase the timelines. You see, I am in agreement with your base concern -- let's look at non-drug possibilities in conjunction with drugs. Where I veer away from you is in thinking that there was something nefarious driving this.
Mike
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John2038
I think you are super and great and i like your posts. You are not afraid to challenge people. Are u in europe, sounds like you are in science. I have alot to say about all written here.
1. Doctors who see patients are retail clerks selling meds for pharma companies, sometimes in usa you see as many pharma reps in the waiting room as patients, they are usually sport jock salesmen types from rich families pharma reps who expect to make 300k a year and work 20 hours a week. They are not highly educated. The Retail Doctors who treat patients can be smart, have to be to get thru med school, but they can only say and do the EXACT approved pro tocalls for all and any med problem.
You have HIV the only thing they can say or do is what is rigorously approved and tested and really they dont even have enough time to keep up with all that and the changes. Now in USA the vast majority of profit from all money paid into Med care goes to elderly retired rich parents and other rich people and pension funds who are INVESTORS in pharma and med insurance companies etc.
So there really isnt much money left to pay Dr.s and nurses fair wages or give treatment to patients, visit kaiser if you dont believe me. Anyway the retail Doctor is kind of like a clothing store worker all they can sell is the suit on the rack the drugs that have been approved. This is historic because in the 20s and 30s there was all kind of snake oil sold. Doctors try to do thier best. Retail Doctors ARE not researchers and do not have time to keep up with all the papers in basic research, they barely have time to read about all the new meds on the way.
2. Research Doctors and PhDs are paid very very little they make almost no money unless they start a company, they are extremely busy trying to make discoveries in hiv science and med science but there is not enough money to fund them, there is not enough money to support them. The system is not made to help people it is made to make profit for investors ONLY. capital society has triumphed completely. Researchers are human and have 8 hr days. here needs to be 100x more of them.
3. innovative and expensive treatments that may work in any disease cannot make it to market because there is not enough money to pay for the treatment for everyone
4. in USA there is a cult of psychology and it is like the book 1984 if you express or have any strong emotion or show emotion or feel anything then the people on this board, many of whom have never left new jersey, try to attack you as mentally ill, dont worry about it, thank god many of us have traveled to expressive wonderful places where having human emotions is not completely outlawed yet, here in the USA they want to give a prozac pill to everyone, if they feel ... we are in a anglo german country here very rigid very puritan in thinking but very wild too, very anglo saxan. psychology does kill many people in the usa and the drugs turn them into zombies i have seen this with many. many people cant sleep (because of cafeeine and alchohol etc then they get dr. to give more drugs to sleep and mental problems)
5. the history of this epidemic is complex and they have been doing the most they can, but even in mid 80s there were a half dozen years where those hiv sufferers in SF and NY who improvised and took 3 types of anti virals at the same time lived, way before it was approved, some Retail doctors started giving all different meds at the same time and it worked, that is how it was discovered the triple cocktail,
Originally and the way anti retrovirals where discovered was the smart fast bio tech pharma industry just tried every drug they had in their libraray to see if it would work agianst hiv the first to work was azt and most all drugs have evolved from that fortunate event of them already having one approved in the med cabinet already.
It was only two month ago that they even discovered the 273 hiv dependance proteins that defines how ALL the genes and proteins in a cell work to make HIV and this was ONLY possible in last year or two because of human genenome, micro arrays, and robot testing arms to test tens of thousands of samples fast, and siRNA a new technique so so many things had to be invented
6. the animal model they are now using is very very very very close to the human hiv, they have a special SIV that works most like hiv and so what is done in animals now at least is very close
7 there is not enough money to research all the areas of hiv that need to be tested. for many of us it is a wake up call that the world and govt and society really doesn't care much about many average people although
the amount of money that is spent on disability etc is mind boggling
8. one reason the blood and reinfusing it into human etc is not so popular now is that they tried that in dozens of good and bad countries in the 80s and 90s and killed alot and took alot of rich hiv peoples money
so unless they can go from a to b to c to d ... all the way to z they do not want to try it one people
in other words they have to have perfect research and perfect results to go from a to b to c etc....
9 they are discovering things they need to know about hiv every week now because of tools are new and it was ONLY possible in last year or two because of human genome's project, micro arrays, and robot testing arms to test tens of thousands of samples fast, and siRNA a new technique so so many things had to be invented
10 the only thing that is proved to work is HAART and it is very very strong meds
11. the one weird thing about hiv actually 3 things is, it is reverse transcriptase RNA etc, this makes it very complex to treat (about 2 billion years ago DNA based life evolved from RNA base life and this reverse transcript is probably a remenant of that epoch) other things is the cd4 receptor .. hiv hide in and attacks the very part of body that it needs to fight it, so this is completely boggling to the human immune system, it gets all mixed up, check out my post on pd-1 cd8 which by the way they just had a big discovery 3 days ago in cd8 pd-1
there are 5 different substances that cd8 secrets that are messed up by hiv and this was just anounced 3 days ago
[[[(furthermore suggested that ‘‘polyfunctional’’
CD8 T cells with the ability to mediate up to five
different effector functions (CD107a, interleukin [IL]-2,
tumor necrosis factor [TNF]-a, interferon [IFN]-c, and
macrophage inflammatory protein [MIP]-1b) in response to
stimulation by antigen may form the basis of a more effective
CD8þ T cell response . Similarly, differences between
antigen-specific CD8þ T cells from HIV-1 progressors and
nonprogressors with respect to up-regulation of programmed
death-1 (PD-1, also called CD279) and downmodulation
of the IL-7 receptor in chronic viral infection
(CD127) have been demonstrated.]]]]]
if science could modulate all these factors cd8 could control hiv like in most other animals...
(CD107a, interleukin [IL]-2,
tumor necrosis factor [TNF]-a, interferon [IFN]-c, and
macrophage inflammatory protein [MIP]-1b)
12. check out my post on research --- many subjects you ask about are touched on... they have muzzled me and reduced me to posting under one giant long post now in research area but there is good stuff there and also on other posts there
13. 9% of human genomes is retro viruses that got stuck in us in last 100 million years of evolution this is not new
14 there is more being researched on hiv than probably any disease ever but even then it is not enough
15 if the money for stupid war in iraq went to hiv research the cure would have been found by now
16. researchers want to find cure treatment new science etc for a few reasons ... win noble prize, recognition, money, better jobs, respect, fame etc. but at the same time they have to play nice with all thier collegues so not to piss anyone off and loose funding so they have to take small logical steps, only in private companies where some scientist convinces investors to pump money into new idea can bold new steps be taken
there are thousands of these bold steps being taken in companies and millions of small steps in univ. research in hiv and genes and cancer
18 they are very very close to a cure in my opinion, i have been studying every report every science paper ever twist and turn since 1981 and they are very close, i think that with HAART they are basically got a clear sky and with all the new meds posted above and then 10x more to 100x more that isnt even at clinical stage right now they are so close and basically this is a solved disease it just have to be tested and proven
19 if you look at the history of medicine book it does not matter what year you look at .... what ever the technique in the past if it was ten years 100 years 300 years or 500 years ago or 2000 or 3000 or 5000 years ago... or one year ago... medical science is always horrifically shockingly primative and backward and doing the wrong thing when the right thing is just around the corner just a few months away, why that is... probably because we are in a bit of an anti intellectual world where a MCDonnaolds rest. mgr of ten stores make 3x what a doctor makes.
20. many more things to write
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Bim,
What you have just posted above would have to be the biggest load of bug-eyed crazy I've ever read in this forum. I respctfully suggest you might consider investing in some more tin-foil for your hat.
This comment:
12. check out my post on research --- many subjects you ask about are touched on... they have muzzled me and reduced me to posting under one giant long post now in research area but there is good stuff there and also on other posts there
. . . is wantonly unfair.
Whilst this:
5. the history of this epidemic is complex and they have been doing the most they can, but even in mid 80s there were a half dozen years where those hiv sufferers in SF and NY who improvised and took 3 types of anti virals at the same time lived, way before it was approved,
. . . is just flat out wrong.
I could go on, but my head is beginning to ache.
MtD
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Yeah, right, Bim, they really "muzzled" you. You have your own thread under "Research News." Since you post research news, that is entirely appropriate and hardly evidence of "muzzling." Puhleeze.
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17 be careful people can be really mean and cruel here , usa is not a civilized country at all, it is filled with half educated, who think they are educated, people who do not speak even there own language correctly
if you post here you can get abuse and hang in there
BIMAZEK
This section (17) of your post is disrespectful and totally uncalled for, either remove it or it will be removed for you...it's your choice...it's flamebaiting and you know it...it will not be tolerated.
Edited to let you know I have decided to remove it.
Jan
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" be careful people can be really mean and cruel here , usa is not a civilized country at all, it is filled with half educated, who think they are educated, people who do not speak even there own language correctly
if you post here you can get abuse and hang in there"
What in the blue blazes is this drivel? People can be mean and cruel in any place, not just the US. And the US not civilized? I can think of other places that are not civilized and people are struggling for things that we take for granted on a daily basis. And how do you know who is educated or how far anyone's education has gone? That in itself sounds stupid, I would say retarded but I don't want to insult people. And this line from you is correct?
"people who do not speak even there own language correctly"....I think someone needs to go back to school.
Some people sure are bizarre to say the least.....
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Now in USA the vast majority of profit from all money paid into Med care goes to elderly retired rich parents and other rich people and pension funds who are INVESTORS in pharma and med insurance companies etc.
4. in USA there is a cult of psychology and it is like the book 1984 if you express or have any strong emotion or show emotion or feel anything then the people on this board, many of whom have never left new jersey, try to attack you as mentally ill, dont worry about it, thank god many of us have traveled to expressive wonderful places where having human emotions is not completely outlawed
P.S. You also owe apologies to:
All those on this board on Medicare, for whatever reason, including myself, because I'm 65, and my 90-years-old+ parents, who worked their whole lives, contributing to the Medicare insurance fund, and who are not rich and who are not INVESTORS "in pharma and med insurance companies." Without Medicare, many of us would be dead. It's that simple.
All those on this board who have conveyed words of love, kindness, and support to others who have expressed strong emotion. The examples are too numerous even to attempt to list.
Those who live in New Jersey. Do you think you're a Letterman or a Leno with such tired jokes? I live in NYC, not New Jersey, but I can see New Jersey from my windows, and I've been around enough to know that "having human emotions" there is "not completely outlawed." I've traveled to "expressive wonderful places"--15 countries, in fact-- and I haven't discovered such utter ignorance and depraved human emotion as you have expressed in your post.
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Bim,
What you have just posted above would have to be the biggest load of bug-eyed crazy I've ever read in this forum. I respctfully suggest you might consider investing in some more tin-foil for your hat.
I saw this post in the works last night, but didn't have the energy or the will to stay up long enough to see it all hit the fan. I knew to expect some prime crazy and once again, Bim, you surely didn't disappoint. You not only expressed your usual gold standard lunacy, you managed to insult broad swathes of people in the process...including all of us here on the forums.
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Edfu, he said "Med care", not "Medicare".
I didn't find anything insulting in Bim's post, but it is entertaining. I never get tired of things like this --
. . . it is filled with half educated, who think they are educated, people who do not speak even there own language correctly if you post here you can get abuse and hang in there"
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Edfu, he said "Med care", not "Medicare".
I didn't find anything insulting in Bim's post, but it is entertaining. I never get tired of things like this --
Not the least bit surprising.
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Bim, I have not read anything so outrageous in a long, long time. I'm on disability, and I for one would like to know where all the mass amounts of money this country is spending on it (disability) is. I'm certainly not making a good living off of it.
I know countries that are far less tolerant than the US. South Africa, Iraq, Iran etc. Even though I believe there a lot of things that could be improved here, I would much rather live here than in the Middle East.
And you, by the way, could use a good brushing-up of the English language. Your #8 is a total run-on sentence.
I can't imagine the hours you take thinking up such craziness. I take that back; it doesn't take but a New-York minute to post such limp-minded crap.
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It's sad when HIV patients need psycholocal services yet refuse to accept this fact.
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It's sad when HIV patients need psycholocal services yet refuse to accept this fact.
My sympathy has just about dried up at this point.
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I thought the forums were acting up again and took me to 'Off Topic' instead of 'Living With HIV'. I mean, aren't jokes, bad as they may be, and such supposed to be in 'Off Topic'?
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john
i was thinking the big reason that the idea you mentioned about filtering and the amount of blood and why if there is so little virus why does blood transfused into body get disfunctional and the reason is exactly what was discovered three days ago and which i posted above and in the research section. it is that even if you put in tons of good blood the cd8 cells which are suppose to fight the bugs they get turned off JUST by touching and rubbing against the antigen the surface of hiv, so how and why was just discovered 3 days ago, the first big discovery was 1 year ago that cd8 cells got turned off by hiv, and it took a year to figure out how and why
hiv not only infects and distroys cd4 cells but it also touches but does not infect but it turns a switch a receptor off on surface of cd8, they are the killer cells that should eliminate hiv and cd4 infected cells, but just 3 days ago they discovered how and why the cd8s get turned off
they found that just touching or coming in contact for a millisecond with hiv tells the cd8 via a signal to shut down... how and why, well there are 3D parts of the cell sticking out and they have a shape and they also have electrical charges, everything in body is electric and charged and magnetic, so there is a strong attraction for one key with the hole or one shape with its receptor so if hiv get close there is an
electro magnetic attraction ** if they hiv just brushes past the cd8 it turns it off so a small amount of hiv can turn off most all the cd8 cells. if you understand this what i just wrote you will understand more than most Doctors on the planet about hiv, this is new new information [try to read my post about cd8 and pd-1 in research]
it really is an amazing time because in just each day there is a new major discovery and mysteries are being revealed before our eyes
in the last week, the last month, the last year, 3 years 5 years 10 years there has been an exponential explosion on hiv discoveries.
the other huge discovery is in my bimazek research post, which is about the discovery of the entire life cycle of hiv in the cd4 cell, hiv hijacks 273 different proteins and cellular genes inside and they just discovered this in feb 2008, this is huge huge, they found it out by testing every gene in the human genenome four at a time and see if hiv grew or didnt grow if they shut off the genes
it is great time because every day new discoveries
your question was a very very good one, the answer they just found out
**(just like there is an electro magnetic attraction between the hiv meds and the pretease or reverse transcriptase molecular shape which is also electro magnetic charged and the shapes and charges fit perfectly
all this happens in a water world of the cell, i guess salt waTer so that there can be electric charges)
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dear everyone, i apologize if my post offended anyone, i really didn't mean it to hurt anyone, i think there should be more money for disabilities and more money for hiv and the sick, i don't really proof read much
i was upset because everyone was attacking john who is new and you have to admit that USA is very fascistic these days
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dear everyone, i apologize if my post offended anyone, i really didn't mean it to hurt anyone, i think there should be more money for disabilities and more money for hiv and the sick, i don't really proof read much
i was upset because everyone was attacking john who is new and you have to admit that USA is very fascistic these day
Then maybe you and John should think about what you say before you post it. No one is picking on John because he is new. From what I am seeing, you and John are speaking on things without really considering what you are saying and how it is going to be perceived. Or maybe you are and hoping for drama. Just saying....
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Queen Tokelove, as usual out of topic
Otherwise, busy this week, not too much time to read especially such posts.
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John,
I will be brief and maybe or maybe not my post will be of help to your discussion. I can understand that some people do not have the best ID doctors however in my experience I have been lucky enough to have great doctors that know whats going on.
I do not know what the future of research & development will bring other than we can live longer now also considering how we take care of our bodies and approach our health. I have nothing further to add on this Stem cell research and other research with HIV other people have said it already.
I will tell you what my nurse & doctors told me from the get go after diagnoses and that is HIV is yours or My disease and you have to take charge of your life. One thing we don;t want to do is get so obsessed with a cure or research that we all we hope on and live for is a cure. Truth be told I think we all want this virus eradicated but reality tells us that we have to live day by day enjoying our lives and making the best of things whatever that may be.
Having said all of that there is absolutely nothing wrong with being interested in research and development and watching what happens, however there are some inept doctors and pharma corps. in this world and while things are being developed times are good now although people are still dieing and will die all we can hope for is our health today and tomorrow etc.. Rest assured they are much better than they were in the 80's & 90's.
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Queen Tokelove, as usual out of topic
Otherwise, busy this week, not too much time to read especially such posts.
John, please stop. You continue to create drama as well as confusion. You are not creating a welcoming and healthy and loving environment when you write in this style and make comments like this.
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Queen Tokelove, as usual out of topic
Otherwise, busy this week, not too much time to read especially such posts.
Yep, John, you're right, I have been too busy to read such drivel from you and your buddy Biz. I have had more important things to do than read your crap but what made me come in here was what I have been hearing so I decided to take a look for myself. But I guess you've been too busy writing a shitload of this stuff to know what I have been too busy doing. Funny when Biz made his comments about the US and the English language, you didn't say anything about that being off topic. I wonder why. Here's something else off topic, how is that wonderful woman of yours? I guess she's not taking up your time obviously.