Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 19, 2014, 07:30:30 PM

Login with username, password and session length


Members
  • Total Members: 24258
  • Latest: ter353
Stats
  • Total Posts: 649933
  • Total Topics: 49607
  • Online Today: 190
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Really upset by the researchers and the docs  (Read 14737 times)

0 Members and 1 Guest are viewing this topic.

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #50 on: May 03, 2008, 08:25:31 PM »
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.

Offline edfu

  • Member
  • Posts: 1,086
Re: Really upset by the researchers and the docs
« Reply #51 on: May 03, 2008, 09:14:48 PM »
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. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline darwin

  • Member
  • Posts: 69
Re: Really upset by the researchers and the docs
« Reply #52 on: May 03, 2008, 10:17:52 PM »
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?
October 2007 - Chose love/stupidity over protection
23 April - Diagnosed
30 April - CD4: 364/22.1% VL: 2,198
11 July - Started Viramune/Truvada
13 August - Undetectable

Offline xyahka

  • Member
  • Posts: 794
  • Dance together!! aha!! aha!! I like it!!
Re: Really upset by the researchers and the docs
« Reply #53 on: May 04, 2008, 12:19:47 AM »
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
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Really upset by the researchers and the docs
« Reply #54 on: May 04, 2008, 12:21:21 AM »
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
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline darwin

  • Member
  • Posts: 69
Re: Really upset by the researchers and the docs
« Reply #55 on: May 04, 2008, 12:56:22 AM »
Quote
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.   
October 2007 - Chose love/stupidity over protection
23 April - Diagnosed
30 April - CD4: 364/22.1% VL: 2,198
11 July - Started Viramune/Truvada
13 August - Undetectable

Offline edfu

  • Member
  • Posts: 1,086
Re: Really upset by the researchers and the docs
« Reply #56 on: May 04, 2008, 01:42:53 AM »
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. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #57 on: May 04, 2008, 07:42:58 AM »
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.
« Last Edit: May 04, 2008, 07:44:44 AM by John2038 »

Offline kevin143

  • New Member
  • Posts: 1
Re: Really upset by the researchers and the docs
« Reply #58 on: May 04, 2008, 07:54:12 AM »
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...

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #59 on: May 04, 2008, 09:34:11 AM »
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
« Last Edit: May 04, 2008, 09:53:33 AM by John2038 »

Offline Dachshund

  • Member
  • Posts: 5,999
Re: Really upset by the researchers and the docs
« Reply #60 on: May 04, 2008, 10:59:17 AM »
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.

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Really upset by the researchers and the docs
« Reply #61 on: May 04, 2008, 11:28:58 AM »
[
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)

Online Miss Philicia

  • Member
  • Posts: 24,513
  • celebrity poster, faker & poser
Re: Really upset by the researchers and the docs
« Reply #62 on: May 04, 2008, 11:44:43 AM »
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.
"I’ve slept with enough men to know that I’m not gay"

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Really upset by the researchers and the docs
« Reply #63 on: May 04, 2008, 12:59:24 PM »
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.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline darwin

  • Member
  • Posts: 69
Re: Really upset by the researchers and the docs
« Reply #64 on: May 04, 2008, 02:09:07 PM »
Quote
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.
October 2007 - Chose love/stupidity over protection
23 April - Diagnosed
30 April - CD4: 364/22.1% VL: 2,198
11 July - Started Viramune/Truvada
13 August - Undetectable

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #65 on: May 04, 2008, 02:56:43 PM »
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..

Offline bocker3

  • Member
  • Posts: 3,457
  • You gotta enjoy life......
Re: Really upset by the researchers and the docs
« Reply #66 on: May 04, 2008, 03:32:24 PM »
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
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #67 on: May 04, 2008, 03:50:55 PM »
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.

Online Miss Philicia

  • Member
  • Posts: 24,513
  • celebrity poster, faker & poser
"I’ve slept with enough men to know that I’m not gay"

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Really upset by the researchers and the docs
« Reply #69 on: May 04, 2008, 04:23:22 PM »
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
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline thunter34

  • Member
  • Posts: 7,324
  • His name is Carl.
Re: Really upset by the researchers and the docs
« Reply #70 on: May 04, 2008, 04:27:04 PM »
AIDS isn't for sissies.

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #71 on: May 04, 2008, 04:46:15 PM »
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  ?
« Last Edit: May 04, 2008, 04:49:07 PM by John2038 »

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,092
Re: Really upset by the researchers and the docs
« Reply #72 on: May 04, 2008, 04:46:38 PM »
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.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bocker3

  • Member
  • Posts: 3,457
  • You gotta enjoy life......
Re: Really upset by the researchers and the docs
« Reply #73 on: May 04, 2008, 05:24:58 PM »
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
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #74 on: May 04, 2008, 06:09:24 PM »
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.
« Last Edit: May 04, 2008, 06:16:04 PM by John2038 »

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Really upset by the researchers and the docs
« Reply #75 on: May 04, 2008, 06:31:31 PM »
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
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline edfu

  • Member
  • Posts: 1,086
Re: Really upset by the researchers and the docs
« Reply #76 on: May 04, 2008, 07:43:55 PM »
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. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline bocker3

  • Member
  • Posts: 3,457
  • You gotta enjoy life......
Re: Really upset by the researchers and the docs
« Reply #77 on: May 04, 2008, 08:02:36 PM »
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
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline bimazek

  • Member
  • Posts: 781
Re: Really upset by the researchers and the docs
« Reply #78 on: May 06, 2008, 11:58:49 PM »
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


« Last Edit: May 07, 2008, 02:25:13 AM by anniebc »

Offline Matty the Damned

  • Member
  • Posts: 12,244
  • Ninja Please
Re: Really upset by the researchers and the docs
« Reply #79 on: May 07, 2008, 12:55:58 AM »
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

Offline edfu

  • Member
  • Posts: 1,086
Re: Really upset by the researchers and the docs
« Reply #80 on: May 07, 2008, 01:38:35 AM »
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.     
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline anniebc

  • Member
  • Posts: 5,956
  • AM member since 2003
Re: Really upset by the researchers and the docs
« Reply #81 on: May 07, 2008, 01:40:19 AM »
Quote
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
« Last Edit: May 07, 2008, 02:21:37 AM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Really upset by the researchers and the docs
« Reply #82 on: May 07, 2008, 02:02:47 AM »
"  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.....
« Last Edit: May 07, 2008, 02:06:44 AM by Queen Tokelove »
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline edfu

  • Member
  • Posts: 1,086
Re: Really upset by the researchers and the docs
« Reply #83 on: May 07, 2008, 02:26:53 AM »
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.    
« Last Edit: May 07, 2008, 02:50:15 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline thunter34

  • Member
  • Posts: 7,324
  • His name is Carl.
Re: Really upset by the researchers and the docs
« Reply #84 on: May 07, 2008, 05:36:21 AM »
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.
AIDS isn't for sissies.

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: Really upset by the researchers and the docs
« Reply #85 on: May 07, 2008, 07:00:03 AM »
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 --

Quote
. . . 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"
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Dachshund

  • Member
  • Posts: 5,999
Re: Really upset by the researchers and the docs
« Reply #86 on: May 07, 2008, 07:29:02 AM »
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.
« Last Edit: May 07, 2008, 07:41:23 AM by Dachshund »

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,092
Re: Really upset by the researchers and the docs
« Reply #87 on: May 07, 2008, 07:50:39 AM »
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.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Miss Philicia

  • Member
  • Posts: 24,513
  • celebrity poster, faker & poser
Re: Really upset by the researchers and the docs
« Reply #88 on: May 07, 2008, 08:10:13 AM »
It's sad when HIV patients need psycholocal services yet refuse to accept this fact.
"I’ve slept with enough men to know that I’m not gay"

Offline thunter34

  • Member
  • Posts: 7,324
  • His name is Carl.
Re: Really upset by the researchers and the docs
« Reply #89 on: May 07, 2008, 12:31:55 PM »
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. 
AIDS isn't for sissies.

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: Really upset by the researchers and the docs
« Reply #90 on: May 07, 2008, 02:17:20 PM »
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'? 

Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline bimazek

  • Member
  • Posts: 781
Re: Really upset by the researchers and the docs
« Reply #91 on: May 07, 2008, 06:10:38 PM »
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)

Offline bimazek

  • Member
  • Posts: 781
Re: Really upset by the researchers and the docs
« Reply #92 on: May 07, 2008, 06:43:20 PM »

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
 


Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Really upset by the researchers and the docs
« Reply #93 on: May 07, 2008, 11:49:42 PM »
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....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Really upset by the researchers and the docs
« Reply #94 on: May 08, 2008, 01:01:26 AM »
Queen Tokelove, as usual out of topic

Otherwise, busy this week, not too much time to read especially such posts.
« Last Edit: May 08, 2008, 01:03:24 AM by John2038 »

Offline Mike89406

  • Member
  • Posts: 206
Re: Really upset by the researchers and the docs
« Reply #95 on: May 08, 2008, 01:37:07 AM »
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.

 

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Really upset by the researchers and the docs
« Reply #96 on: May 08, 2008, 01:47:54 AM »
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.

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Really upset by the researchers and the docs
« Reply #97 on: May 08, 2008, 11:33:03 AM »
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.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.