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Author Topic: Stop the Meds  (Read 7750 times)

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Offline Norman

  • Member
  • Posts: 7
Stop the Meds
« on: March 01, 2007, 08:51:34 PM »
The Experience of Norman James – This is not Fantasy!

In December of 1995, I was diagnosed with Acquired Immune Deficiency Syndrome with a CD4 count of 51. The evaluation and selection of Viral Load assays were underway at that time.

That said, and after ten years of deleterious drugs and so-called ping-pong blood results,
I discontinued the use of ant-retroviral medications.  For the first time I have "normal" liver functions, blood pressure and cholesterol.  My symptoms of osteoarthritis have literally disappeared. 

I am compelled and excited to share with you, my blood results over the past six months.  Please keep in mind I have taken no anti retro-viral medications since May 16, 2006.   

                        V/L                 CD4
Aug 2006      44.7K                210
Nov 2006      26.5K                250
Jan 2007       22.8K                290

Following recommendations on nutritional supplements is the reason for this. These supplements include Selenium, Tryptophan, NAC and L-Glutamine to name four. I have eliminated all processed foods; eat live food, very little red meat cooked properly to avoid carcinogenic heterocyclic amines and acrylamides.  I am a nutrition fanatic and have spent the last three years researching and gaining the education need to make this decision.

To date, discontinuing anti retro-vital therapy has saved the government in excess of $40,000 and an annual saving in excess of $50,000.  With a supplement cost of about $100 per month and an annual medication bill in excess of $50,000, the reduction in cost to maintain good health has been reduced by over 97%.

These results are not unique as there are many HIV infected individuals living a healthy, normal life without HIV/AIDS medications.  Unfortunately, the accounts of these success stories are being suppressed.  Contrary to mission statements to provide any and all health care information to the HIV/AIDS community, AIDS Service Organizations are reluctant to disseminate this information for fear of reprisal from the very pharmaceutical companies who fund a number of AIDS related events.

The key to good health is proper nutrition and attitude and it would be irresponsible of me not to share what could very well be one of the strategies in defeating HIV/AIDS

Norman James
February 2007
 


Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,560
Re: Stop the Meds
« Reply #1 on: March 01, 2007, 10:32:32 PM »
Norman, you're entitled to say what your personal experience has been and what has been useful for you. You are not entitled to take that an speak in general terms which border on advocating denialist theory.

You can choose not to take medications. However, even if you disagree, the fact is that many, including members here, are alive because of taking HIV meds, which have unquestionably prolonged the lives of many.

If you go further into advocating denialist positions you'll end up being banned here. And please don't waste my/our time with saying our minds are closed. Because as far as denialists are concerned, yes, our minds are closed.

Consider yourself warned.
Andy Velez

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Stop the Meds
« Reply #2 on: March 02, 2007, 07:12:41 AM »
Hi Norman,

It's no secret that the antiretrovirals come with side-effects, but that doesn't mean they don't do the job of keeping us alive.

It's not unusual for someone who has been on meds long-term to want to take a break from them. I hope you have taken yours under your doctor's supervision and I hope you continue to monitor your numbers, with an eye to restarting when your numbers indicate you need to.

I've been hiv positive for ten years and I'm not on meds either, but it doesn't mean that I won't take them when I need to. I just don't need to yet.

Good luck with your treatment break but please, don't throw the baby out with the bathwater and discount them completely.

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 ManISOMan

  • Member
  • Posts: 168
Re: Stop the Meds
« Reply #3 on: March 03, 2007, 01:41:00 AM »
I don't think that Norman needs to be warned, but that's my humble opinion.  And, I'm not a global moderator.

I have no problem with the body of Norman's posting, he's sharing his story and expressing his opinion. 

I don't think he should have used the heading: Stop the Meds.

Norman hasn't been off drugs for more than a year, and perhaps later will begin to have problems as the consequence of a higher viral load, then again, perhaps he won't. 

As far as his new eating habits, I believe most of us know these are based in fact and apply to all of us.  I know, I could do a better job of eating!

I also agree with Ann, if you don't need the meds, don't take them................but when the time comes......................well we can all make our own decisions................can't we?

Offline ManISOMan

  • Member
  • Posts: 168
Re: Stop the Meds
« Reply #4 on: March 03, 2007, 01:46:41 AM »
Norman,
I'd be interested in how much you spend in food and what your shopping list looks like.  Perhaps some recipes. 

Sincerely,
Scott

Offline Miss Philicia

  • Member
  • Posts: 23,991
  • celebrity poster, faker & poser
Re: Stop the Meds
« Reply #5 on: March 03, 2007, 09:01:11 AM »
My toxic HIV medications have kept me alive... and infect allowed me to return to +700 cd4's

Damn right I'm thankful.  Sure, it's not easy and I have days of Liquid Poo, but overallI do not argue with success.

I'm also wary of anecdotal information, and even more so when it's presented on the internet where basically anyone can write whatever crap they want.

On that note I wish Norman the best of luck, but do not be dogmatic in what you have found to be your case in the past year.  It could totally be a chimera.
"I’ve slept with enough men to know that I’m not gay"

latinscorpio75

  • Guest
Re: Stop the Meds
« Reply #6 on: March 03, 2007, 04:13:46 PM »
Hi Norman,
I applaude you for posting your experience.  We are so used to just following what the doctors and the pharmaceutical companies tell us (most of it driven by their own personal agenda = to sell their drugs).
I am (and have been for the past 9 years) taking medications and endured (luckily) some side effects.  I wish I didn't have to take medication, or that at least my regimen would be tailored to my needs.  I don't think everyone needs as much medication.  I think those of us who are able to maintain a very healthy diet, excercise consistently and really take care of ourselves should have the option to take a lower dose of the medication. 
I was taking Crixivan in the past.  I only took half of the prescribed dose for about 7 years and all my numbers remained great.  My doc. knew about it and he was the only one who actually didn't get on my case about not taking the meds as prescribed.  He said that "as long as your none of your numbers go down you should be OK"  I feel that he understood that not all the regimens are perfect and that as consumers we don't question them.
I'm sorry I digressed.
I'm glad you are able to stay off the meds.  I try to eat "healthy" every day and it sure makes a big difference.
I'd love some tips on supplements.

M.


The Experience of Norman James – This is not Fantasy!

In December of 1995, I was diagnosed with Acquired Immune Deficiency Syndrome with a CD4 count of 51. The evaluation and selection of Viral Load assays were underway at that time.

That said, and after ten years of deleterious drugs and so-called ping-pong blood results,
I discontinued the use of ant-retroviral medications.  For the first time I have "normal" liver functions, blood pressure and cholesterol.  My symptoms of osteoarthritis have literally disappeared. 

I am compelled and excited to share with you, my blood results over the past six months.  Please keep in mind I have taken no anti retro-viral medications since May 16, 2006.   

                        V/L                 CD4
Aug 2006      44.7K                210
Nov 2006      26.5K                250
Jan 2007       22.8K                290

Following recommendations on nutritional supplements is the reason for this. These supplements include Selenium, Tryptophan, NAC and L-Glutamine to name four. I have eliminated all processed foods; eat live food, very little red meat cooked properly to avoid carcinogenic heterocyclic amines and acrylamides.  I am a nutrition fanatic and have spent the last three years researching and gaining the education need to make this decision.

To date, discontinuing anti retro-vital therapy has saved the government in excess of $40,000 and an annual saving in excess of $50,000.  With a supplement cost of about $100 per month and an annual medication bill in excess of $50,000, the reduction in cost to maintain good health has been reduced by over 97%.

These results are not unique as there are many HIV infected individuals living a healthy, normal life without HIV/AIDS medications.  Unfortunately, the accounts of these success stories are being suppressed.  Contrary to mission statements to provide any and all health care information to the HIV/AIDS community, AIDS Service Organizations are reluctant to disseminate this information for fear of reprisal from the very pharmaceutical companies who fund a number of AIDS related events.

The key to good health is proper nutrition and attitude and it would be irresponsible of me not to share what could very well be one of the strategies in defeating HIV/AIDS

Norman James
February 2007
 



Offline Norman

  • Member
  • Posts: 7
Re: Stop the Meds
« Reply #7 on: March 04, 2007, 12:05:35 PM »
I want to thank those individuals who made comments regarding my health regimen.

To Ann; What I am doing here is not some dalliance and my work and activity is well researched and supported by doctors.  I do monitor my numbers with monthly blood work.  Viral load and CD4 numbers are not the only markers used in determining ones health.  CD4 counts can be confusing when put into practice, terrifying healthy people with low T-cell counts who only have low T-cell counts because they aren’t sick and therefore do not need T-cells to be on massive alert.

If you have a high T-cell count it could mean that you have an autoimmune disease or allergies however; the high CD4 count tells you that you are healthy.  This is a misnomer.

My experience was shared in an effort to bring attention to the fact that HIV can be treated with alternative therapies, at a fraction of the cost.  My approach may not be workable for all individuals, but for those who are not able to tolerate meds, this may help.  I do not ask people to think like me what I suggest is that they think.

To the Global moderator; I find you to be a very perceptive individual having passed judgment on about 250 words of dialogue.  I have been warned and judged, it was my impression these forums are intended to share information and not pass judgment.

The answer to AIDS lies within nature and the human body’s ability to heal itself.  Big pharma continues to dangle carrots and create false hopes. With a U.S. market of $286 billion dollars for meds in 2006, are we naïve enough to think that a cure is around the corner?

All the best to those who rely on meds to manage their ailment(s) and know that a properly nourished body will be better equipped to assimilate the drugs.

To the GM, I consider myself a realist, not a denialist.  The AIDS virus represents a biological experiment that got out of hand and was not introduced to humans by tainted monkey meat.  With shat is know about nutrition, may I ask why POZ does not disseminate this information?  Why the proliferation of outdated information on the subject?  Could this be due to the fact POZ does not want to jeopardize the advertising dollars received from big pharma?

POZ’s mission is to provide any and all information to the HIV community.  POZ is entrenched in reactivity not pro-activity and are quick to judge individuals who bring new information to the community.  This forum has been nothing but time wasted and confirms POZ’s commitment to the drug companies, not the community.

I trust that these comments will have me banned from the site.  Oh well, anyone interested in info contact me at norman.james@sympatico.ca

There is always an alternative.




Offline alisenjafi

  • Member
  • Posts: 811
  • They say HIV comes from monkeys!
Re: Stop the Meds
« Reply #8 on: March 04, 2007, 12:45:46 PM »
modified just because!
« Last Edit: March 04, 2007, 12:51:35 PM by alisenjafi »
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline Miss Philicia

  • Member
  • Posts: 23,991
  • celebrity poster, faker & poser
Re: Stop the Meds
« Reply #9 on: March 04, 2007, 01:10:05 PM »
This forum has been nothing but time wasted and confirms POZ?s commitment to the drug companies, not the community.

::notes furiously::
"I’ve slept with enough men to know that I’m not gay"

Offline bear60

  • Member
  • Posts: 4,104
Re: Stop the Meds
« Reply #10 on: March 04, 2007, 02:30:45 PM »
I really dont think Norman has been honest with us.  He represents conspiracy theorists.  He has an agenda.  He does not care about us.
Quote Norman ...."To the GM, I consider myself a realist, not a denialist.  The AIDS virus represents a biological experiment that got out of hand and was not introduced to humans by tainted monkey meat. "

and I offer this :
http://mediafilter.org/CAQ/CAQ58TrackGenocide.html
The false conspiracy theories are themselves
a contributing factor to the terrible toll
of unnecessary AIDS deaths.
Poz Bear Type in Philadelphia

Offline Norman

  • Member
  • Posts: 7
Re: Stop the Meds
« Reply #11 on: March 04, 2007, 03:10:02 PM »
To the Bear,

Thank you for your comments, its a wonderful feeling knowing that people can judge.  Being aware of conspiracy theories does not mean that one supports those theories.  For you state that conspiracy does not exist may be evidence that you are not aware of IG Farben.  Do you honestly believe they had mankind's best interests in mind as they were preparing mustard gas and other chemicals for Aushwitz?  Eugenics is nothing new.

I have been honest with readers and there is no hidden agenda.  And while my approach to health care may seem unortahdox as it is not in line with current allopathic thinking, the result speak for themselves.  And be aware my results are not unique and many HIVers are living well without meds.

Bear, come out of hibernation and look around.  I do not believe that conspiracy theories are the contributing factor to the terrible toll of unnecessary AIDS deaths.  What is contibuting to unnecessary deaths is big pharma putting profits before people.  It has been 25 years and trillions of dollars in profits - yet no solution.  Who's fooling who?

I believe it is people such as yourself who contribute to unnecessary AIDS deaths as you are convinced that medications are the panacea.  This is outdated thinking and we as individuals must persue a health regimen that is not focused solely on medications.

Hey Bear, don't be so quick to judge and if you had any idea of the importance of nutrition, then I don't believe you will embark on another flight of fantasy.

Norman
P.S. Careful What You Eat!

Offline aupointillimite

  • Member
  • Posts: 3,229
  • FUS DO RAH!
Re: Stop the Meds
« Reply #12 on: March 04, 2007, 04:58:31 PM »
Norman,

You've convinced me.

I'm flushing my meds down the toilet as soon as I get home.

One tiny detail, though.

Now, when I die in 10 to 15 years from AIDS, which will be caused directly by HIV infection that will be uncontrolled by meds... I'd like for my family to know who to send the funeral bill to.

Your mailing address, please.
Your tastebuds can't repel flavor of this magnitude!

Offline aupointillimite

  • Member
  • Posts: 3,229
  • FUS DO RAH!
Re: Stop the Meds
« Reply #13 on: March 04, 2007, 05:04:35 PM »
To the Bear,

Thank you for your comments, its a wonderful feeling knowing that people can judge.  Being aware of conspiracy theories does not mean that one supports those theories.  For you state that conspiracy does not exist may be evidence that you are not aware of IG Farben.  Do you honestly believe they had mankind's best interests in mind as they were preparing mustard gas and other chemicals for Aushwitz?  Eugenics is nothing new.

I have been honest with readers and there is no hidden agenda.  And while my approach to health care may seem unortahdox as it is not in line with current allopathic thinking, the result speak for themselves.  And be aware my results are not unique and many HIVers are living well without meds.

Bear, come out of hibernation and look around.  I do not believe that conspiracy theories are the contributing factor to the terrible toll of unnecessary AIDS deaths.  What is contibuting to unnecessary deaths is big pharma putting profits before people.  It has been 25 years and trillions of dollars in profits - yet no solution.  Who's fooling who?

I believe it is people such as yourself who contribute to unnecessary AIDS deaths as you are convinced that medications are the panacea.  This is outdated thinking and we as individuals must persue a health regimen that is not focused solely on medications.

Hey Bear, don't be so quick to judge and if you had any idea of the importance of nutrition, then I don't believe you will embark on another flight of fantasy.

Norman
P.S. Careful What You Eat!


I just want to add that what is so convincing here is the sheer science behind it.

Marvel at the studies!

Traipse through the data!

Ooh and aahh over hard evidence!

P.S. I'm simply shocked that someone who seems to have so much proof on his side would have to resort to Godwin's Law so early in a thread.  If not for the power of his message and the undeniability of his claims, I would think that he was relying on a trite rhetorical ploy... but that clearly isn't the case here.
Your tastebuds can't repel flavor of this magnitude!

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Stop the Meds
« Reply #14 on: March 04, 2007, 05:20:30 PM »

To Ann; What I am doing here is not some dalliance and my work and activity is well researched and supported by doctors.  I do monitor my numbers with monthly blood work.  Viral load and CD4 numbers are not the only markers used in determining ones health.  CD4 counts can be confusing when put into practice, terrifying healthy people with low T-cell counts who only have low T-cell counts because they aren’t sick and therefore do not need T-cells to be on massive alert.

If you have a high T-cell count it could mean that you have an autoimmune disease or allergies however; the high CD4 count tells you that you are healthy.  This is a misnomer.

My experience was shared in an effort to bring attention to the fact that HIV can be treated with alternative therapies, at a fraction of the cost.  My approach may not be workable for all individuals, but for those who are not able to tolerate meds, this may help.  I do not ask people to think like me what I suggest is that they think.


Norman, I actually agree with you.

I hope you understand that we weren't quite sure what to make of your first post here on the forums. If we seemed to have judged you, please also be aware that we gave you the benefit of doubt. Otherwise, your account would have been banned and your thread deleted. That is what we do with obvious denialists.

As someone who has not yet started meds (and ten years positive), I fully agree that a healthy life-style and good diet will go a long way towards keeping the meds at bay. There's a lot about Big Pharma that I don't like either - but I also know that a day will come when my body needs more help than good nutrition and exercise when it comes to keeping my hiv infection down to a dull roar.

I don't get the feeling that you are telling anyone to flush their meds - I think you're trying to say that in some cases, hiv can be controlled to an extent through means other than the meds.

I'm glad to hear that you are carefully watching your numbers - and yes, I do agree that not everyone with low CD4s will be sick all the time, just as someone with higher CD4s will not always be in tip-top condition. There are so many factors to take into account when considering the meds or no meds yet question.

You mentioned something about POZ - personally, I don't really know what they do or do not advocate as far as nutrition goes. I joined the AIDSmeds website years ago and the merger is fairly recent. However, there is a nutrition forum here and you are most welcome to post nutritional information there.

And welcome to the site...

Ann

PS - I wish you every success in gaining as many med free months/years as you can. Good luck!
« Last Edit: March 04, 2007, 05:23:53 PM by 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 BlkRedBonenla

  • Member
  • Posts: 85
    • My MySpace Page
Re: Stop the Meds
« Reply #15 on: March 04, 2007, 06:48:57 PM »
The replies to Norman's original post have been  very, very interesting and actually less shrill than what I'm used to. You see, I'm one of those some of you stupidly call an AIDS denialist. We are used to having our arguments - be they from professional resarchers, doctors/internists, journalists, or HIV+ persons themselves - met with anger by those who seem so invested in HIV=DEATH=Meds. As someone already concerned with the mechanical dysfuctions of our so-called democracy, I am always troubled by the lack of argument from the AIDS/Meds Believers and the heaping of epithet.

Fpr the record, I do not deny AIDS. I do not deny friends of mine have died. I don't deny I have it and have had it for almost 7 years. I have denied myself so-called HIV medicines, but this could change.

Somewhere, sometime, over the last 50 or so years - to put it broadly - people increased their faith in Modern Medicine, assigned it the same awe and reverence reserved by peons for the medieval Mother Church. This faith is misguided. A simple headache is not a sign of aspiriin deficiency, yet this is how we have been trained to respond to a headache. My grandmother used to ask me when I had a headache: "have you had a bowel movement?" Whether that was the cause or not, our elders often reflect a different approach to health ... remember FOOD? Note how even the government has had to acknowledge the rise if disease post WWII in the US due to our new eating habits.

I am not and would never challenge anyone taking HIV medicines or any other medicine, but where the HIV Questioners have most of us made a point to read BOTH sides ... actually, there are MANY sides ... HIV/Meds Believers are stuck in the Mother Church, noting how healthy they are, how meds save them, because some NEW science of CD4 counts tell them so. I would ask any of you who tout Cd4 so liberally what your CD4 baseline is. 99.9% of you don't know because it was never measured.

Purely anecdotely, it has seemed to me people I know on meds gain 10 years before their organs turn against them, cancer, or death because their insides have been so toxified they cannot fight. I repeat this is anecdotal. But it feeds my skepticism of the HIV meds. Skepticism, not outright rejection. I am not a luddite.

Peace and Health to you all,
Lowell
Los Angeles, CA
- cd4 20 2/07 & 50K VL

**** 3/07 started ATRIPLA *******
- cd4 70 5/07 & Undetectable VL
- cd4 218 11/07 & Undetectable VL
-cd4 297 3/08 & Undetectable VL
-cd4 439 1/09 & Undetectable VL
-cd4 436 4/09 & Undetectable VL
-cd4 442 8/09 & Undetectable VL
-cd4 512 11/09 & Undetectable VL
-cd4 531 2/10 & Undetectable VL
-cd4 439??? 6/10 & Undetectable VL ...


_____________________________________

"A little bit of knowledge is a dangerous thing, but some minds can only handle a little." - George Bernard Shaw

Offline Cheo63

  • Member
  • Posts: 35
Re: Stop the Meds
« Reply #16 on: March 04, 2007, 11:57:41 PM »
I couldn't agree more with BlkRedBonenla.

Cheo

Offline dixieman

  • Member
  • Posts: 889
Re: Stop the Meds
« Reply #17 on: March 05, 2007, 02:56:06 PM »
I think everyone has made a good point... I went through years of alternative methods because, there were no meds available... also I was a lab rat "Trails" before protienese inhibitors were available... fortunatley I was able to get on a merc study... for crixivan before there was a name for the drug... well I'm here, alive and now on another med... atripila... but, at one time in my life I would have drank my own piss to stay alive... Oh ... I did...lol the book is called "Your own personal medicine" so... I have to say even with the side effects... that I endured from the past... I'm here and alive and without the meds I think I'd been six feet under way before now! ...

Offline Norman

  • Member
  • Posts: 7
nONE
« Reply #18 on: March 06, 2007, 07:55:38 AM »
The Truth About Drug Companies
NEWS: The author calls the pharmaceutical industry a “vast marketing machine” that thrives on monopoly rights and public-sponsored research but produces few innovative drugs.
Marcia Angell
Interviewed By Peter Meredith
September 7, 2004
The high price of prescription drugs has put -- and kept -- U.S. pharmaceutical companies in the news recently, but Dr. Marcia Angell argues that problems with the industry run even deeper. In her new book, The Truth About Drug Companies: How They Deceive Us and What to Do About It (reviewed in the current issue of Mother Jones), the former editor of the New England Journal of Medicine contends that the industry has become a marketing machine that produces few innovative drugs and is dependent on monopoly rights and public-sponsored research.
Angell disputes the industry’s reputation as an “engine of innovation,” arguing that the top U.S. drug makers spend 2.5 times as much on marketing and administration as they do on research. At least a third of the drugs marketed by industry leaders were discovered by universities or small biotech companies, writes Angell, but they’re sold to the public at inflated prices. She cites Taxol, the cancer drug discovered by the National Institutes of Health, but sold by Bristol-Myers Squibb for $20,000 a year, reportedly 20 times the manufacturing cost. The company agreed to pay the NIH only 0.5 percent in royalties for the drug.
The majority of the new products the industry puts out, says Angell, are “me-too” drugs, which are almost identical to current treatments but “no better than drugs already on the market to treat the same condition.” Around 75 percent of new drugs approved by the FDA are me-too drugs. They can be less effective than current drugs, but as long as they’re more effective than a placebo, they can get the regulatory green light.
Finally, Angell attacks major pharmaceutical industry -- whose top ten companies make more in profits than the rest of the Fortune 500 combined -- for using “free market” rhetoric while opposing competition at all costs. She discusses Prilosec maker Astra-Zeneca, which filed multiple lawsuits against generic drug makers to prevent them from entering the market when the company’s exclusive marketing rights expired. The company “obtained a patent on the idea of combining Prilosec with antibiotics, then argued that a generic drug would infringe on that patent because doctors might prescribe it with an antibiotic.”
Angell, who is a doctor and a lecturer at Harvard Medical School, wants to see the industry reformed. She recently sat down with MotherJones.com to talk about how to “ensure that we have access to good drugs at reasonable prices and that the reality of this industry is finally brought into line with its rhetoric.”
MotherJones.com: Pharmaceutical companies say higher prices are necessary to pay for heavy R&D investment.
Marcia Angell:These companies are justifying extremely high prices by saying they need this money to cover their high R&D costs, and they’re very innovative, and that we should be willing to spend the money in return for the innovation. In the book, I question those premises. I say that, yes, they spend a lot on R&D, but still they make more in profits, and they spend two to two-and-a-half times as much on what they call “marketing and administration.” If you want to argue that they need the high prices to cover R&D, it would make more sense to argue that they need the high prices even more to cover their marketing costs. I just want to put that in perspective. Also, their profits are enormously high. Until last year, [they were] the number one industry in the U.S. in terms of profits. In 2002, the top 10 American [pharmaceutical] companies in the Fortune 500 made 17 percent of their sales in profits, whereas they spent only 14 percent on R&D. The median for the other Fortune 500 companies was between 3 percent of sales. So, you can’t make an argument that they’re just eking out a living, just managing to cover their R&D costs.
MJ.com: Your numbers for how much companies spend to bring drugs to market are very different from the industry’s. How come?
MA: The industry arrives at that $802 million [per drug] figure by looking at a tiny handful of the most costly drugs. Those are drugs that were developed entirely in-house, and that are new molecular entities. That’s a very tiny handful of the drugs that come to market each year. They’re the most expensive drugs. Second, even for those drugs, they come up with a figure of $403 million per highly selected drug. They then double that to $802 million simply by adding in what they call the “opportunity costs” — what they could have made if they’d spent the same money on investments. Third, the figure is inflated by not including the tax deductions and tax credits. They get very large tax deductions and credits. So the figure is highly inflated. That gets buried in the reporting of it. When you hear the figure, you hear it given with the implication that for any random new drug, that’s what it costs to develop it. And that’s just simply not so.
MJ.com: In your book, you charge that even some of what the industry calls R&D is actually marketing. Can you elaborate on that?
MA: Well, no one knows for sure what goes into the R&D budget, because the companies aren’t telling. It’s been estimated that about a quarter of it is spent on Phase IV clinical trials, many of which are just excuses to pay doctors to prescribe the drug. They don’t yield any real scientific information. But no one knows for sure.
MJ.com: So should the pharmaceutical industry be making its books public?
MA: Yes, because it’s an industry that is so dependent on the public for special favors. This industry, despite its free-market rhetoric, is on welfare big-time. It lives on taxpayer-funded research to a very great extent, and it lives on government-granted monopoly rights in the form of patents and FDA-conferred exclusivity. An industry that is so beholden to the public has some obligation in return. That includes opening their books. We ought to know more about their business. We ought to know whether the claims they make can really be justified.
MJ.com:Why should the industry have to open its books — or be asked to charge less for its products, for that matter — when other industries aren’t held to those standards?
MA: The public is absolutely dependent on this industry for drugs that people need to take for their health and even their lives. So, I think there are some special obligations.
MJ.com: In the past you’ve written that “there can be no better example of something that does not belong in the market [than prescription drugs],” but you don’t address that in the current book. Do you still think so?
MA: I don’t think I’ve ever said that they should come off the market, but there need to be reforms that accomplish several things. [Pharmaceutical companies] have too much influence over the education of physicians in this country. They have too much control over the evaluation of their own products, and that’s a conflict of interest. I think the industry needs to be regulated, but I’ve never suggested taking it out of the market altogether. It’s now a funny mix of free enterprise and welfare. On the one hand, it is free to choose to make whatever drugs it wants to make. If it wants to make one more me-too drug, it’s free to do that instead of making an antibiotic that may really be needed. It’s free to charge whatever the market will bear in this country. And at the same time, it claims all sorts of special favors. It claims that Americans should not be allowed to purchase drugs in any other country. It claims the right to license taxpayer-funded research. It not only claims the right to very long patents, but extends them in all kinds of quite dubious ways. Now, this is hardly free enterprise.
MJ.com: In terms of licensing drugs from publicly-funded institutions, how much do companies generally pay? Is it relative to how much they charge?
MA: I don’t know. I know in the case of Taxol, it was very little. In general, when companies license a drug from universities, it’s not all that much compared with the profits. They’re licensing now from small biotechs as well. The industry likes to portray itself as the engine of innovation, but in fact its major products are me-too drugs—minor variations of drugs already on the market. For example, we have six cholesterol-lowering statins on the market right now; we have five SSRI anti-depressants; we have nine ACE inhibitors to treat high blood pressure. If you look at the top-selling drugs on the market right now, most of them are me-too drugs, and the original of these drugs came on the market back in the ‘80s, or even earlier. The companies have been stringing out variations on the themes ever since. The original drugs were usually based on government university research.
MJ.com: Regarding me-too drugs, can’t one make the argument that there should be as many different variations of a drug as possible on the market? Shouldn’t the market decide?

MA: We have an FDA because what drugs to sell isn’t something for the markets alone to decide. It’s also a technical decision that requires scientific evidence. The companies don’t want to provide that evidence. They don’t test their me-too drugs against other me-too drugs at comparable doses for the same conditions. The companies also make the case that there need to be several me-too drugs on the market because if one doesn’t work, maybe another one will. But until they test that, it’s just an assertion. They don’t test their me-too drugs in people who have not done well with an earlier drug of the same class. They have to do that in order to prove that assertion. I suspect that in most cases, a second drug will not work any better, since me-too drugs are so similar, but no one can know until it’s tested.
MJ.com: Speaking of the FDA, you characterize the agency as one that facilitates new drugs, rather than regulating them. To what degree is the agency controlled by the industry it’s supposed to regulate?
MA: Too much. The FDA now gets “user fees” from drug companies—about a half a million dollars for any drug that the FDA reviews. Those user fees are small for the companies, but it’s a substantial part of the FDA budget. In fact, it’s more than half [the budget for] the Center for Disease Evaluation and Research, which is responsible for approving new drugs. In return, the FDA is supposed to review drugs faster.
MJ.com: So you would propose getting rid of those user fees?
MA: Absolutely. I think that the FDA should be funded adequately by taxpayers, and it should see taxpayers as the “users.” It should not be funded by the industry it’s supposed to be regulating.
MJ.com: One of the changes you propose in this book is that the NIH -- and not drug companies -- be responsible for clinical research. But you propose that drug companies help pay the NIH to do this. Couldn’t this lead to a similar problem?
MA: No, because instead of paying user fees by drug, companies would be levied a very small percentage of their revenues. It wouldn’t be tied to research on any particular drug. This would be only for clinical trials, not the early development stage. The NIH would put out contracts to universities and medical centers to actually design and carry out the clinical trials, but the NIH would have oversight.
MJ.com: FDA commissioner Lester Crawford recently warned against buying drugs from Canada, citing potential terrorist threat if drugs are tampered with. Is there a valid concern there?
MA: There’s no reason to think that drugs that are imported from Canada are any more likely to be unsafe than drugs that one gets right here. In fact, the cases of counterfeiting that I know of have all occurred in this country. So there’s some reason to think that maybe it’s safer to get your drugs from Canada [laughs]. The drugs that an American would purchase from Canada are going to be the drugs that they ordinarily pay much more for here—that is, FDA-approved drugs. They’re not going to be buying just something in a bottle; they’re going to be buying FDA-approved drugs that were shipped to Canada from European and American companies which have manufacturing plants all over the world. We have to remember that drugs are crossing borders all the time. Pfizer, for example, said on its website last year that it had 60 manufacturing plants in 32 countries. That right there constitutes a lot of borders. There’s nothing about the Canadian border that’s going to render these drugs poison. It’s a scare tactic. What the industry does not want people to realize is the great price disparities between the United States and every other advanced country.
MJ.com: In the past, you’ve criticized the U.S. health care system, saying that “if we had set out to design the worst system we could imagine, we couldn’t have imagined one as bad as this.” Do you still believe that?
MA: The market-based pharmaceutical industry is one problem in the larger problem of a market-based health care system. We spend twice as much per person on health care as the average of all the other advanced countries, and that gap is growing. Yet, we get less for our money. We have over 40 million people with no insurance at all. Most of the rest of us are under-insured. The usual indices of health, like life expectancy and infant mortality, are toward the bottom in the U.S. compared with other advanced countries. So, something’s wrong, and it’s the system. A market-based system distributes health care as a commodity according to the ability to pay, instead of as a social service distributed according to need. Yet, there’s an inverse relationship between one’s ability to pay for health care and one’s medical needs. The situation gets crazier when you allow competing, investor-owned insurance companies to insure Americans, because they have learned that the best way to compete is to keep costs down by skimping on health services. We have the only health care system on the world that’s based on dodging sick people. [Insurers] do everything they can to avoid covering people at high risk of getting ill, and when they do get ill, [companies] fight paying for it. They exclude certain expensive conditions as much as possible. They pass those costs back to the patient or another insurer. And that takes a lot of paperwork, and a lot of overhead.
MJ.com: In the book, you mention that every other developed nation regulates prescription drug prices—
MA: Yes, but they have different ways of doing it. If you look at Canada, it’s a very mild form of regulation, really. They have a national board, and when a me-too drug comes on the market, they say it can’t be priced any higher than the highest-priced drug for that condition already on the market. Nor can it be priced any higher than the median in seven advanced countries, and these countries include the U.S. Then they say the prices cannot rise any faster than the inflation rate. So, that’s not too onerous. Drug companies make profits in Canada.
MJ.com: Is that an example of a system you’d like to see in the U.S.?
MA: Yes. Importing drugs from Canada is not a very sensible solution, because Canada can’t possibly supply the U.S., and the drug companies are now retaliating against Canada and squeezing their supplies. So, importation is not a long-term solution. It’s just a symptom of the real problem of price-gouging in this country. We should be looking at the Canadian system, and maybe import that rather than importing the drugs.
MJ.com: Realistically, do you think a system of price controls like that could ever be instituted in the U.S.?
MA: Well, something’s going to have to happen, because there’s no one around any longer who can afford the drug company prices. Not only are individuals having problems, but states are having problems. They feel these prices through the Medicaid system. The federal government is going to find that this fairly open-ended Medicare drug benefit is going to be completely outpaced by the rising prices.
MJ.com: If pharmaceutical manufacturers were forced to lower prices, couldn’t it backfire if they cut back on research as a result, rather than marketing?
MA: Well, they might choose to do that, but they wouldn’t have to. They could cut their marketing instead, or they could cut into their profits. Their R&D very often comes from the NIH or other publicly sponsored research. Most of their R&D expenditures go for clinical testing after the creative work is already done. This is true for the most innovative drugs, as well as for cancer and HIV/AIDS drugs.
MJ.com: You say that there’s “palpable” discontent among seniors and others about drug prices. Do you see this as having an effect on the problems you described in the book?
MA: I think that there are political effects, and I think that’s what you’re seeing right now with the importation issue. Congress has passed a law saying that you can import drugs from Canada, but that the administration must certify that it not add any risks. Both the Clinton and Bush administrations have refused to do that. It’s giving Congress an opportunity to play both sides of the street.
MJ.com: Given that Congress is torn between seniors and the pharmaceutical lobby, do you think change will ever occur?
MA: I think that the public doesn’t seem to be buying the argument that drugs from Canada are dangerous. If it comes down to choosing between the money that drug companies provide and the votes that citizens provide, I think members of Congress are going to go with votes. That’s what I hope will happen.
MJ.com: In the conclusion of the book, you stress that citizens should grill their doctors regarding drugs they’re prescribing. Why do you recommend that type of action most heavily?
MA: The other reforms will take time, but in the meantime, doctors are too willing to provide drugs for very minor conditions. Those drugs are too often the very most expensive, heavily advertised, me-too drugs. I think that patients have to get a little savvier about that. Instead of just grabbing that sample and thinking they’ve gotten something for free, they ought to think about what it means. Nearly every drug has side effects. I do think that we are an overmedicated society.
Peter Meredith is an editorial fellow at Mother Jones



Offline bimazek

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Re: Stop the Meds
« Reply #19 on: March 06, 2007, 07:37:47 PM »
norman ... from a science perspective, and i have seen this with many who took early meds in 80s and 90s, right now you cant tell if it is the meds you took in the past that are keeping you gliding along in the healthy zone or the vitamins, i was all gun ho about vitamins and suppliments and i have heard over and over that selenium is good, from people who  are on and off meds.

please list all the vitamins you are on exactly

of course if your numbers drop and you are in low cd4s of say 200 or under 100 would you go back on meds

there is theory that some people can go off meds and be ok

i have never been on meds yet

i am afraid, i want to avoid for as long as possible, but i have seen the science, if my numbers are below 350, then it is time

my friends who are not on meds yet, never been on meds, and have 500 t cells are still getting Shingles and abscesses and MRSA infections which are all infections from a low immune system but not OI.

my friends who are ON meds are getting the same things!!!!

for me the number is 350 or 14% or over 150,000 VL over 3 separate tests

YES the vitamins help a bit, and they can extend, say you would go for 7 years without meds before getting to  50 t cells, with vitamins, i think a case can be made that you can get to 7.5 years or 8 years or if you

but meds will give you 18 or 25 or 35 years

are the side effects of the meds so so horrible, i have never been on them, its very very scary to me

out on west coast people are always going on and off meds, seems like 1 year on  or two years on then 8 months off, but now they say that is very bad and dangerous, twice as many deaths and OIs.

if you do a google scholar search on any vitamin and HIV u will find tons of articles proving it helps

but again it only adds 10% or 20% to the number of years

all things in science are a bell curve in many cases, a few will have supergreat results, most ave. results, and some no results from vitamins or meds or what ever


please list all the vitamins you are on exactly


please list all the vitamins you are on exactly


please list all the vitamins you are on exactly

Offline Norman

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Re: Stop the Meds
« Reply #20 on: March 06, 2007, 09:44:05 PM »
SUPPLEMENTDOSAGES               
               
                             
         SUPPLEMENT   CONTENTS      DOSE         
               
Selenium    200mcg   1/day          
L-Glutamine   500mg   2X2/day          
NAC   500mg                   2X2/day   
5-HTP Tryptophan   50mg   1/day          
Alpha Lipoic Acid      50mg   1/day          
Folic Acid               1mg   1/day          
Cal-Mag  which contains                 
Calcium         150mg            
Magnesium     150mg            
Vit D3            100 I.U            
Zinc   5mg            
Vit E   400I.U.              
Vit B6   100mg             
Vit C   1000mg             
Vit B12   1000mcg                   1/day      
Sierra Sil   500mg                   3/day         
Coconut Oil - Extra Virgin   15ml         
Olive Oil   15ml                   1/day         
               
Acidopholis & Bifidus   10 billion   1/day         
Bee Pollen   600mg                   1/day          
Flaxseed Oil   1000mg             
               
               
/               
/               

Offline bimazek

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Re: Stop the Meds
« Reply #21 on: March 07, 2007, 04:26:05 AM »
which ones that you take norman are essential

which ones do you feel are the most important?

which ones seem to make a big difference?

where do you get coconut and flaxseed oil, i couldnt find either of these at 3 grocery stores


Offline jack

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  • fomerly the loser known as Jake
Re: Stop the Meds
« Reply #22 on: March 07, 2007, 08:20:06 AM »
You really dont have enough time on this to determine anything. I went off drugs for three years. My ts bounced around 350 for three years and vl was between 15000 and 50000 the entire time, up and down. In month 36 vl went from 45000 to 1 mill. Went back on drugs.
Everyone is different and you really shouldn't begin to think that your success over a few months is a big deal or might apply to other people

Offline Norman

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Re: Stop the Meds
« Reply #23 on: March 07, 2007, 09:00:08 AM »
Well I blieve it is a big deal and I am not suggesting that anyone adopt my regimen.  This program is sustainable and if you were to visit www.hdfoster.com you may be enlightended.

As a community, it is very important to share experiences regarding health care.  For those individuals who dimsiss without research, again that is the beauty of choice. 

I do not believe that drugs are the panacea and that the solution to AIDS will come from chemistry. 

There are many indiviudals living healthy without meds and while this info continues to be suppressed, there will be more testimonials in this regard.

It is important that we take control of our health and to sit idly by and wait for some magic bullet makes little sense.  If the results of my regimen are short lived, then so bit it.  I want to be able to say that I took care of myself.

The intent of my post is to share that experience - what you do with it is your choice.  So let us not be too quick to judge. I CAME HERE IN PEACE.

Norman


Offline jack

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  • fomerly the loser known as Jake
Re: Stop the Meds
« Reply #24 on: March 07, 2007, 11:13:43 AM »
whatever, I took all the same crap you did and I did make it three years.

Offline BlkRedBonenla

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Re: Stop the Meds
« Reply #25 on: March 07, 2007, 02:47:55 PM »
Some thoughts:
The thing about supplements is they work differently for different people, or different constituttions [as the homeopaths say]. I grew up with severe nasal allergies and was given stronger and stronger allopathic medcines. When I began to explore alternative health, I found some people could take Ephedra and do well; others took whole garlic, and did well; others took high doses of vitamin C and did well. None of these worked for me. I found a homeopath who administered treatment for about 2 years and I've been allergy free for 10 years. With Vitamins/minerals/herbs, ST JOHN'S WORT and LICORICE are said to raise CD4, but only for a period of time, and in many cases St John's W increases your sensitivity to sunlight. I was such a case and had to stop after a year. Coincidentally or not, a few months later, I got sick for the FIRST time, which is why I am faced with the MEDS issue more seriously.

Let me say this brothers and sisters, whatever is happening to our bodies the proverbial wisdom that WE ARE REPSONISIBLE FOR OUR HEALTH is true. The drug companies and their drug pushers, the doctors, are not going to guide our thinking anywhere else but to their drugs. I have never had a doctor ask me if I was eating well. A 6-months unemployed Black man in LA loses XX lbs and the drug pusher says GO ON MEDS!!! This feeds my distrust. And yet, something IS happening to our bodies. I say this: whatever is happening to our bodies is happening to the planet, history will prove me right on this.

It is for us for find the medium, that proverbial middle road. US. Just my thoughts. Maybe this is my Mission.

Peace and Health
- cd4 20 2/07 & 50K VL

**** 3/07 started ATRIPLA *******
- cd4 70 5/07 & Undetectable VL
- cd4 218 11/07 & Undetectable VL
-cd4 297 3/08 & Undetectable VL
-cd4 439 1/09 & Undetectable VL
-cd4 436 4/09 & Undetectable VL
-cd4 442 8/09 & Undetectable VL
-cd4 512 11/09 & Undetectable VL
-cd4 531 2/10 & Undetectable VL
-cd4 439??? 6/10 & Undetectable VL ...


_____________________________________

"A little bit of knowledge is a dangerous thing, but some minds can only handle a little." - George Bernard Shaw

Offline burstnbloom

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Re: Stop the Meds
« Reply #26 on: March 16, 2007, 12:36:18 PM »
Congrats to Norman for posting "HIS EXPERIENCE".  I am pleased to see someone having a different "OUTLOOK" other than opening their mouths to swallow whatever medicine their doctor and Mega-profitting drug companies tell them to.  Norman has every right to post what he did...there is nothing wrong with "believing" there are other ways to maintain good blood work numbers from something other than Combo meds.  I have been on the meds for over 10 years now and have been off them for just about 2 months now and my CD4's are up and viral load has only increased from undetectable to 2220.  This is my 3rd drug holiday ...the first was for 9 months and the second one for 1 year plus.  I AM NOT A DENALIST of the Hiv/Aids theory but I am sick of this website focusing on nothing but TOXIC hiv meds that are destroying our bodies from severe side effects.  Just because it IS POSSILBE to be drug free and do well does not mean anyone is denying anything.  OPEN your eyes everyone and see that there are other options. Yes hiv drugs have saved many lives, as well as my own, but if there are ways to gain access to information on others experiences without them ..then let it be and stop the judgement of anyone that has a positive experience and likes to share that with others.
burstnbloom

Offline SouthSam7

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Re: Stop the Meds
« Reply #27 on: March 16, 2007, 12:55:29 PM »
Norman shouldn't be warned; that's ridiculous.  I know a bunch of people that take holidays (under doctors care) and get back on their meds if their numbers dictate. 

We should be able to see everyone's experiences, not just certain filtered views.  That's the purpose of these forums.

Sincerely,
Sam

Offline Arkan

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  • Posts: 13
Re: Stop the Meds
« Reply #28 on: March 17, 2007, 11:28:46 AM »
In my experience...

the first thing they offer as you walk into the HIV clinic is to enroll in a Medication program. Way before even knowing your CD4/viral load. Sad!!

So, I went and did my homework, investigated about the current mainstream medication and the alternatives (supplements, exercise and food). Guess what I found out.
First I didn't like the idea of all those side effects so I decided to give it a try to the alternatives, which by the way have been around for as long as the mainstream research.

You can actually control to some extent the progression of the virus and maintain your CD4 level. I documented all the supplements I took after I was diagnosed and how the viral load declined steadily... I have maintained my weight, increase musculature, reduce cholesterol, fight diseases, feel better. I only wish I could track my viral load more closely to see which supplements work better. I do spend like $100 a month on all my supplements and I have to watch very carefull how I take them. NO negative side effect, but some should be taken with food, and lots of water, etc...

You have to take control!!! it is easier to let the Doc give you a pill and hope it will work than changing you habits (sleeping, stress, eating, exercising, etc). That's the panacea!! In this modern world we believe there are no alternatives.

best to all

P.S. I do not work for supplements companies nor have investments with them. I am just a regular guy with some brain to question reality.
Peace!

Offline risred1

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Re: Stop the Meds
« Reply #29 on: March 17, 2007, 12:31:54 PM »
Whether it is the nature of this long term permanent day after day battle with a grinding virus, or the large number of choices we have from denial to seeking the holy grail. We all are trying to cope with our bodies and our condition. There are those of us who are going to have difficulty with dealing with HIV, nearly all of us have or will have serious issues and decisions to deal with.

There is little doubt in my mind that there is much one can do to improve our bodily function while having essentially chronic condition. But we are all different, so making statements such as stop the meds, and talking about drug company conspiracies to me is largely irrational reactions to a desperate situation.

We have to choose what we do, and when we do it. We have lots to think about, perhaps too much. I hate to think what is always a temporary condition, which existence is, becomes the defacto, here is the answer.

I have also managed to stabilize my falling cd4 count, but I don't have illusions of what is next. At some point I'm going to have to choose or not to suppress the virus via medications. Fortunately I have a good specialist, and have studied my options.

But in the end I choose as we all do what our steps in dealing with HIV is. And I'm happy to share my findings and encourage others to see the options and the collective thoughts on supplements, diet and exercise. But i try not to make pronouncements too much, or cast aspirations on our medical options or the "evil" drug companies.

I think individuals can and should be banned if they are abusive, illogical and/or make over the top claims. I consider this in the category of over the top and depending on subsequent statements, responses and claims could lead to banishment if they are not supportive for the purposes of these forums.

I am not a liberal, nor do I believe in censorship, but I also believe in the right of a group to self determine what it is they are about. The moderators provide a service for free, they are also free to exercise and police the forum based upon the criteria they establish for the service they provide.



risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline Andy Velez

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Re: Stop the Meds
« Reply #30 on: March 17, 2007, 12:43:51 PM »
Arkan, you reported that I'd "jumped the gun" with my warning to Norman. You're fairly new to the site so you may not be aware there is a long history of denialists attacking this site and what a serious problem that has been for us.

It was unclear to me when Norman began this thread whether as sometimes has happened in the past, the denialist stuff would emerge or not. Which is why I issued a "warning." A warning is just that. It's not a ban. It's a cautioning if you will. And one which as you can see allowed the thread to continue and develop.

As for what Norman is espousing and talking about, I have personally always been totally supportive of each person shaping and fitting treatment as it works for them. One of the cardinal principles of HIV activism as I have lived it for twenty years has been to respect the individual's right of choice, including very specifically in relation to the medical establishment.

Whether on the meds or not I've always urged the exploration and utilization for example of the possibilities of traditional medicine, nutrition and anything else that offers the possibility of staying healthier.

On this site we have never advocated simply blindly going on to meds, but rather taking an approach which considers alternatives and then going on meds only if and when it seems the right decision for that particular person. It's the sharing of information and experiences here which allows consideration of different points of view to benefit each other.

This thread is a good example of that as we continue to hear differing points of view and experiences and I am now and have always been completely in support of that.

Cheers,

Andy Velez

Offline BlkRedBonenla

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Re: Stop the Meds
« Reply #31 on: March 22, 2007, 02:06:06 PM »
Arkan, you reported that I'd "jumped the gun" with my warning to Norman. You're fairly new to the site so you may not be aware there is a long history of denialists attacking this site and what a serious problem that has been for us.

It was unclear to me when Norman began this thread whether as sometimes has happened in the past, the denialist stuff would emerge or not. Which is why I issued a "warning." A warning is just that. It's not a ban. It's a cautioning if you will. And one which as you can see allowed the thread to continue and develop.

As for what Norman is espousing and talking about, I have personally always been totally supportive of each person shaping and fitting treatment as it works for them. One of the cardinal principles of HIV activism as I have lived it for twenty years has been to respect the individual's right of choice, including very specifically in relation to the medical establishment.

Whether on the meds or not I've always urged the exploration and utilization for example of the possibilities of traditional medicine, nutrition and anything else that offers the possibility of staying healthier.

On this site we have never advocated simply blindly going on to meds, but rather taking an approach which considers alternatives and then going on meds only if and when it seems the right decision for that particular person. It's the sharing of information and experiences here which allows consideration of different points of view to benefit each other.

This thread is a good example of that as we continue to hear differing points of view and experiences and I am now and have always been completely in support of that.

Cheers,



Andy, I don't know what a Global Moderator is - the caption under your photo-  but if this is an example I would remind you that we are adults here and don't need your "warnings". Who is feeling attacked exactly?? What a funny choice of words to assign Norman and his post. Funny how you switched gears from calling Norman a denialist - and we've been called AIDS denialists, Flat-Earthers, and other stupid epithets - then go on to somewhat support OUR arguments, that is - the arguements of HIV Rethinkers or Questioners: MEDICINES do not cure, they treat. They can also kill. Where is the Global Moderator on behalf of our over-medicated cuture? Where is the person to issue warnings that human beings are being attacked by a medical-industrial complex? [I am only employing your rhetoric, Andy] I've probably said before that a headache is not for want of aspirin. I am not anti-medicine. I acknowledge AIDS and the deaths of my comrades, if they want to call it AIDS so be it, but history will show - because history has shown - that in our zeal to CURE, in our zeal to turn quarterly profits we are guilty of gross excesses. So let the dissident speak without your warning. The community square is not being attacked, but enriched. Thank you.
- cd4 20 2/07 & 50K VL

**** 3/07 started ATRIPLA *******
- cd4 70 5/07 & Undetectable VL
- cd4 218 11/07 & Undetectable VL
-cd4 297 3/08 & Undetectable VL
-cd4 439 1/09 & Undetectable VL
-cd4 436 4/09 & Undetectable VL
-cd4 442 8/09 & Undetectable VL
-cd4 512 11/09 & Undetectable VL
-cd4 531 2/10 & Undetectable VL
-cd4 439??? 6/10 & Undetectable VL ...


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Offline jkinatl2

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Re: Stop the Meds
« Reply #32 on: March 22, 2007, 03:53:29 PM »
Global Moderator - one of the people who runs the site.

And between Tim, Peter Andy and Ann, they decide precisely what is available here and what is not, and under what circumstances. To date, this is spelled out in the terms of agreement.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline pozgroup

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Re: Stop the Meds
« Reply #33 on: April 06, 2007, 03:09:17 AM »
I really dont think Norman has been honest with us.  He represents conspiracy theorists.  He has an agenda.  He does not care about us.
Quote Norman ...."To the GM, I consider myself a realist, not a denialist.  The AIDS virus represents a biological experiment that got out of hand and was not introduced to humans by tainted monkey meat. "

and I offer this :
http://mediafilter.org/CAQ/CAQ58TrackGenocide.html
The false conspiracy theories are themselves
a contributing factor to the terrible toll
of unnecessary AIDS deaths.

Becareful to all the new treatments or theories. You may need to check these information(from http://www.thebody.com):

Warning Signs of an HIV Fraud
If you notice any of these warning signs when you consider an HIV therapy, be very careful! The treatment might still be a good one, but you should ask extra questions about it. If it sounds too good to be true, it probably is.


The product prevents or cures HIV or AIDS. Researchers have been working hard for over 10 years, but there is not yet any known cure for HIV or AIDS. The only sure way to prevent AIDS is to avoid being infected with the HIV virus.

The product is a quick cure for a wide range of ailments. Most products are effective only against a specific illness or a few closely related medical problems.

Personal success stories are the only evidence that the treatment works. Of course, if a treatment works, you can find people who will tell you about it. But testimonials don't prove that the treatment worked. Look for results of research studies or other evidence.

Be suspicious if the promoters use key words like miraculous cure, amazing breakthrough, foolproof, suppressed treatments, or secret ingredients. These words are often used to make you think that a treatment is valuable even though there may be no proof that it works.

The treatment was discovered and tested in another country, or is only available outside the US. Certainly, valuable treatments are developed and tested in other countries. However, many other countries permit health claims without the kinds of proof required in the United States.

The treatment is only available privately, for a short time, or from only one source; or if it requires payment in advance. If a product really works, why isn't it advertised and available publicly? This may be a way to get around government regulations.

You can only get the treatment by paying to take part in testing an experimental treatment. When most experimental treatments are tested, people receive them free of charge.
http://www.pozgroup.com--Living with STD, but not lonely!

Offline worriedfriend

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Re: Stop the Meds
« Reply #34 on: April 26, 2007, 06:30:32 PM »
I found Norman's words very interesting, I was NOT offended and I didn't say well more people need to do this. It's nice to hear another view as to what someone else is doing to live with this horrible disease. My dad had cancer and went to a guy who proscribed all these herbs and stuff, and MANY people who did stick with it, survived, yes many didn't, but take that the way you want to. Norman, great article!!

Offline risred1

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Re: Stop the Meds
« Reply #35 on: April 26, 2007, 08:39:36 PM »
I am  not offended either, but I'm not really able to comprehend the conspiracy theories that are being propagated under the Guise of Stop the Meds!

Honestly, when I see these long diatribes and articles about how AIDS is Man Made and Drug companies are part of a Global Conspiracy, well, that just falls in line with HIV Denialist Dogma, except the twist here is that HIV is real, but the MEDS still are the component that kills people. That is exactly a denialists argument.

Sorta sliding it under the door while talking about nutrition and CD4 etc.

My take on corporate conspiracies is that those who believe that a global conspiracy of the size that would encompass HIV is ultimately driven by need to believe something external, some enemy of the people, some thing outside of our otherwise pure nature is the cause of my suffering. (Yes I'm drawing judgements about Norman Writings, I don't have to not judge just because Normal fights a delaying battle to "hear him out", but the message become clear really quite quickly.)

I know lots of people who believe the enemy is outside ourselves, and I know lots of people who believe the enemy is within ourselves. These are distinct perceptions about ourselves. The Idea that we are pure and the forces outside us are responsible for bad things that happen, and those who see the problem being borne of our own personal nature and internal conflicts as the source of our problems.

The problem with HIV from a psychological perspective may be related to the transmission of the disease via Sexual practices or IV Drug Use. Getting HIV this way is something that has to be dealt with, and it can be a severe blow to our own Psyche. With the advancement of treatment where the idea of Chronic and Manageable are the current view of HIV, at least in the west, we now have to deal with the side effects of the medicines to make this a chronic condition. A constant reminder of our "original sin". (I do understand that many of us did not acquire HIV through acts of their own, but there are many of us who know exactly how it happened and to the extent that it was a result of an action taken.)

Dealing now with longevity but at a cost of side effects is going to take a toll. Lashing out and/or Blaming those outside elements who are now deemed "responsible" for our suffering are now seen as working against us, not with us as they should be. Making these judgements while exhausted, worn out, angry and depressed is a response I can understand, but I am not going to stand by as a witness and say, "you got it right".

As humans we seek validation all the time for ourselves. Forums are a common place for one to seek validation of a point or a belief or observation one would make. Its a nice thing to be acknowledged. But I can't give quarter to these conspiratorial views, these oversimplifications of what needs to be done and what is being done to us. Generally our egos can get a bit inflated in our ability to recognise what we would like to call the truth.

What we know about HIV today is remarkable due to the research that Drug Companies and Universities and Government and Private Research Laboratories undertake. It is the scientific competition that is the key to finding treatment for our condition. That is not a conspiracy, that is a race for scientific understanding of HIV at a Genetic/Molecular Level. HIV is not just a condition for us, but now is seen as a tremendous source of knowledge for all viral infections, and the ability to interfere at a genetic level how a Virus wants to insert itself into the DNA of a Cell is incredible stuff. Don't take that for granted. Much of this knowledge about viral infections would not be understood as they are today if it weren't for HIV. That to me does not speak of conspiracies, that to me speaks of expanding our knowledge through science.

Still many have and will die of aids. The question of "Who is responsible", is more important to some than to others like myself. It doesn't matter to me "Who", as I am responsible for the action I took when I contracted the virus. My subsequent treatment options and my life are now subject to many unknowns such as: will I have insurance when I need it? Will I have the resources to put up a good fight of the disease? Will I loose everything in trying to stay alive? Will I be able to keep working? What is my impact on my family, friends and most importantly my partner?

Hey these are heavy issues. It would be easy to channel my frustrations into accusations of the Corporate Conspiracies of the world. I rather just recognise this is what my world has become. And I know that this reflects many, if not all of our concerns and issues.

So if you want to believe in a conspiracy and propagate it, that's your ballywick. I think I'll pass and work on other things.

 
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline SouthSam7

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Re: Stop the Meds
« Reply #36 on: April 27, 2007, 10:41:18 PM »
I was asked a few months ago at my clinic to take a survey some college student was doing as part of their thesis.  Of course I said I would take it.  Here are some questions, and some of my answers:

Q. Do you think hiv medicines are poisonous? A. Yes
Q. Do you think hiv was created in a lab by a government? A. Yes

There were more specific conspiracy questions and I answered yes to or agreed with most of them.  I won't go into more detail for fear of getting "warned" by moderators.  The fact that these types of questions were on the survey, though, shows me that I am not alone in my views.

However, just because I disagree with some groups on where hiv came from doesn't mean I'm a denialist.  And although I believe hiv medicines are poisonous, I also believe that if I don't take these hiv medicines then AIDS would eventually develop. 

Thankfully we can all state our opinion in these forums, whether we agree with each other or not.  To me, the fact that we are free to voice our personal views is more important than what we are talking about. 

There are often many different theories and views in different subjects and sciences.  Both sides think they are right.  No one can force you what to believe, though, and the truth is usually somewhere in the middle.

Offline risred1

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Re: Stop the Meds
« Reply #37 on: April 28, 2007, 11:02:45 AM »
Surveys don't reveal the truth, they reveal opinion.

And on of the "truths" you can rely on is the idea that Human Collective and Individual Perception Trails Reality.

What this means we often base our opinions not is true today, but what was the truth as much as a few years ago.

Much of the Conspiratorial discussion about HIV and Conspiratorial drug companies are based upon arguments 20 years ago about HIV, and anti corporate sentiment expressed by anarchist and anti globalism groups.

The Genesis of political beliefs are often based upon emotional issues and not necessarily the facts. This is true for the left and the right as no one in today's Partisan world give much quarter to other political views and systems, stating opinion and half truths in order to advance a large view of how the world works and how it really should be.

That being said, just how toxic are today medicine? What a people basing their beliefs that the drugs are incredibly toxic, when the truth today is that the new drugs of today are much better than the 1st drugs that were brought into the earlier days of fighting HIV.

We now know about how DDI and Zerit, while powerful anti HIV drugs, had really bad side effects. When you compare this generation of drugs with the lastest ones such as Reyataz, Truvada, Sustiva, while I will not of course claim perfection, I will state improvement.

How we relate to this improvement is important. I see posts based upon the past views that are talking about long term survivors that started treatment Pre HART when the choice was drugs to live versus, AIDS Death. Because many of us now have more recent information about when to start treatment with the improved drugs, many of us are doing much better and tolerate the drugs well. I'm not trying to oversimplify, but forums can have many people who are commenting and asking questions who are not perhaps doing as well as those who are adjusting well to the meds. I Even discussed this with my doctor who agreed, those are doing well take a lower profile. Not everyone does well, but many do, so can that "change" one perception about the toxicity of the drugs? Much depends on where and who we get our information from.

If we take the attitude that we can't "trust" the drug companies where does that lead in our perception of the medicines that are being made available? Putting ones "trust" in a business may be anathema to our core beliefs, so it becomes inevitable one beliefs will arise that will be less receptive to these substances. In my opinion, any organization of people from corporations to government to activists have agenda's and capabilities to be less than pure. This of course includes scientists, artists, universities, hospitals, even our little work teams if we have jobs.

So if we are all ultimately political and opinion driven, how best can we sort through all this information?

Largely I put my faith in science, based upon the principle that whatever science unearths in its studies, the results must be repeatable and the details of the science  are under peer review. I know scientists and researchers and of course my doctors. To hear about the global conspiracy about HIV and AIDS is just an amazing conclusion to me. It is based mostly on the premises that drugs companies somehow are holding out on us, that businesses are evil, that the evil government cooked up HIV in a lab as a biological weapon and tested it on the gay population as they have done in the past with radiation experiments and LSD testing from the 40-50-and 60's.

Personally, I can understand distrust of government and certainly not all business act ethically all the time. But the funny thing about Research and Science, the motivation of these people is to keep working and producing results in order to keep working. It isn't a pure world, but closer in principles to what we would want the world to operate. To have an idea and to study something for years in order to publish those observations, largely to increase our understanding of the world. As most of these researchers barely make a living, is a far nobler way to be in the world, and something closer that we can "trust" in, that perhaps those more corruptable more politically driven organizations.

The key here is that Science Drives the Pharmaceutical Industry, and Competition is driving the myriad of Global, Large and Small, pharmaceutical companies to produce products. Recognizing that better products become preferred and take market share from the less better performing ones.

I don't think it presumptuous to state that the days of Zerit, DDI, Crixivan and AZT are passing in favor of the better more tolerable drugs. And if you have looked at the chart of drugs in the pipeline, which is literally 100 drugs being developed, I mean 100 drugs!, I would suggest that the perception of that if AIDS doesn't kill you the DRUGS will, is based upon trailing perceptions. And I also believe that our understanding of HIV is increasing dramatically every day. It is one of the most studied highly funded globally researched Virus's in history, if not in history. And as this knowledge is increasing on the scientific front, even our holistic understanding of living med free for longer periods of time is improving as well. Which i will state is my current focus in my treatment philosophy.

It is hard to look forward when you don't know what your looking for, therefore it is hard to perceive what HIV treatment will look 5 years from now. But I would suggest that we attempt to focus forward, because in our case, focusing solely on the past can be detrimental to what we choose and how we want to live.


 
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

Offline byathread

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Re: Stop the Meds
« Reply #38 on: April 29, 2007, 10:14:26 AM »
Almost as many opinions as there are hiv medications.  I think there's a sprinkling of truth in every one of the posts including Norman's. 

The human body is not static.  Some of us have better more evolved immune systems than others.  There's been a lot of work connecting the European survivors of  the bubonic plague of the 1300's  and HIV with the mutated form of the gene CCR5, called "delta 32".  Research showed that delta 32 prevents HIV from entering human cells and infecting the body. Researchers think this principle could be applied to the plague bacteria, which affects the body in a similar manner as HIV.

My point?  Some of us are fortunate through the toss of the evolutionary dice to be able to simply take good care of them selves and let their own body's immune system do its work.   ...and some of us got the short end of the stick and REQUIRE the consumption of HIV meds in order to survive.

Norman's story is as important as the updates on cures/ vaccine research posted on here every other week.  It gives us hope that someday we all may break free from the hold that this disease has over us all.

Offline risred1

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Re: Stop the Meds
« Reply #39 on: April 29, 2007, 01:59:43 PM »
i agree with you fundamentally. However, the issue i have with norman's postings generally shows a penchant for overreaching and blaming or looking for someone, or thing to blame for any number of things.

Blaming the Government or conspiracies about the governments alleged involvement as the source of the epidemic, essentially implying that there is a known cure and that we are part of a grand experiment by the shadow forces that view us as chattel, or Blaming the Pharmaceutical companies as foisting bad treatments on us as part of a plan to prevent a cure from being developed in order to extract every penny of profit they can with no regard to those who suffer, while appealing, is largely an emotionall, political reaction based upon ones feelings about being HIV positive and living with the choices we have made and have to make.

We really do tend to get selective hearing and try to use these arguments to achieve, what exactly?

I'll use this as an example of my perspective on these types of discussions/arguments and claims regarding how our political views influence our rational existence, which ultimately may blind us to the reality of a situation.

While camping at a folk music festival, one of the patrons died in their tent. The police were brought to the scene and they proceeded to shut the camp down during the initial investigation and prevented people from leaving the campground. We are talking about for a few hours while they were trying to figure our what happened and if there was a fowl play at hand. I would say the majority of the campers could understand why the police did this and were supportive of their efforts to determine the cause of death.

But for some, the police were acting in a heavy handed manner, and by preventing people from leaving what was possibly a crime scene, they Police were now the fascists Pigs, who were violating peoples rights and were oppressing people, without regard for the person who died and the possibility of fowl play. All that mattered to a few was that they were being infringed upon, and how dare that happen to them.

I find that those propounding global conspiracy theories fit into this class of person who can't see what is right in front of them. That events are not always an indicator of a conspiracy to act against, for lack of a better word, us or really me.

Once this type of attitude is displayed, regardless of the reality of the events that have transpired, suddenly its becomes about something else. And the shrill claims and statements to follow which are now political statements are hailed as the answer to the questions we are looking for.

I can't help myself and therefore engagedin my own diatribe, as I see these claims as a misdirection as to what is reality. That while people may not like the Government or Drug Companies, that doesn't necessarily mean that every action taken is representative of a singular fascist mindset or a grand manipulation on a unimaginable scale.

Questioning authority even those that would claim to be the inquisitors is important. Expanding ones vision to see the bigger picture is what I encourage, and when you start taking these view, most of these dramatic conspiratorial claims by the Denialists, The Conspiratoralists, the Prophets, The Snake Oil Sellers, drift away from the Simple view of the world, into the complex human interaction that is generating advances via Science in the understanding and ultimately treatment for HIV.

----------------------------

Another Point that I have issue is that the truth is somewhere in the middle. I prefer your statement that there are grains of truth in these statements. The truth is not a political opinion.

If one wants to point to how Glaxo Smith Kline hardball tactics in preserving it intellectual property by refusing to lower their prices for kaletra in Thialand  as evidence that the drugs companies is a conspiratorial group of companies bent on stringing us along solely for profit, then one is drawing a conclusion based upon this fact. I would say that this type of conclusion can be propagated as the truth, when in itself is just an action a company is taking in dealing with a business issue. Is it reprehensible? Is it amoral? I would say that these are ligament judgements regarding this type of action. I believe that there is a tendency to propell events into a grander and definitely more hypothetical world of an reflection on how one thinks things work or how some want the world to actually be.

That's fine, but don't call it the truth, and I'm hard pressed to say the truth is in the middle. GSK's decision is their decision. Thailand's Government is making their decisions. The beauty of the interaction between a Government and a Business almost makes one realise the Grand Global Conspiracy that is often associated with HIV doesn't reflect the collusion that would be necessary in that totalitarian view of the world. The FACT that Thialand is striking out on its own despite what a Drug Company want it to do means something else is happening than some would have us believe.

Essentially, facts are often conveniently discarded when they don't fit into ones political views. This obviously applies to our political system and extends to the conspiracy people, the denialists, the anarchists, the snake oil sellers, the cultists......

The unfortunate side effect of these over the top claims is that often people will fall in line with this thinking, which of course is the idea that these groups want to leverage. To create a power structure of its own accord, regardless of the FACTS or the Truth.

I really don't like the idea of getting soft on the facts/truth. Do people need to make up their own minds? Absolutely. Do people need some help in learning how to critically think? I obviously think so, or I wouldn't be writting these ridiculously long forum messages.









 


risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

 


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