Subjecting Yourself to Experimental Meds

ghostlibrary writes "Even while NIH is getting new ethics regs, patientINFORM is being evangelized as a way for ordinary citizens to look up experimental treatment online, in essence circumventing their doctor, and the FDA long ago tacitly approved this. /. debated Wikis in hospital. RSI fans track risky or untested procedures from the Typing Injury FAQ and Health-Hack covers IT-related self-help medicine. Laser-eye stuff is now mainstream and doesn't need a check beyond google. Any other sites out there for those willing to dictate their own medical course? Does this mean Internet users will become test subjects more than the usual college students and elderly?"

If nobody voulnteers no cures will be found

[guildsolutions]

Its pretty obvious... If nobody vols for these medications, then the results will never be determined. Once we leave the earth we goto a better place above anyway, or so a lot of people tell me. Its a good thing to test experimental drugs...

Just not on me.

Be careful

[thewiz]

My life was saved by an experiemntal drug. The doctors couldn't get my heart restarted after my third open-heart surgery via defibrillation or other methods. The anaesthesist was one of the doctors evaluating a new medication that showed promise for restarting hearts and used it on me. As you can tell, it worked.

I've also been on the bad side of experimental drugs and have suffered thru some major side-effects. It's not a great feeling when the medication you are taking to eliminate pre-ventricular contractions makes you feel like you're living underwater.

As for people volutarily subjecting themselves to experimental medications and treatment: TALK WITH YOUR DOCTOR FIRST! He knows your particular case better than any other doctor and can help you evaluate if you are a good candidate for the experimental treatment. It's a good thing that it's becoming easier to find out about available experimental treatments, but don't think it's going to be the "magic-bullet" cure until you find out more and talk with your doctor.

WTF on the challenges?

[PornMaster]

I'm as cynical as the next guy, but how the fuck can someone challenge the publishing of information as violating the Freedom of Information Act?

Day Job: Lab Rat

[RobertB-DC]

Moderately Off-Topic Anecdote time!

One of my favorite unknown alt.country singers, Slaid Cleaves, tells the story of his day job: lab rat for experimental medicines at a center in Austin, Texas.

I take drugs for a living. I'm a human guinea pig. A lab rat. A medical research volunteer. Pharmaco International pays me to stay in their facility for about $100 a day. Some studies only last a couple of days. Some are comprised of several weekend stays. Right now I'm in the middle of a long term study. 22 days. We are in the facility for the entire time, except for a few 20 minute walks around the building for fresh air. No visitors. No outside food. Hospital type meals are provided, along with newspapers, movies, pay phones and a clip board that tells us where to be and when for certain "procedures."

The rest of the story (including the lab's phone number, if you're interested) can be found at Slaid Cleaves' web site [slaid.com].

I'd argue the opposite..

[Quickfry]

Why would Internet users subject themselves this type of thing more than others? If we have the ability to find out about the experimental meds online, we'd know better what we were dealing with, and know enough not to subject ourselves unnecessarily.

Finger joints

[Colin Smith]

After typing all day every day for, hmm, decades now my finger joints get painful. I've found that glucosamine and chondroitin supplements work wonders. They take a couple of days to kick in but no pain. IIRC they act by improving the cushioning the joint better and allowing it to heal.

Re:Day Job: Lab Rat

[Anonymous Coward]

Pharmaco == also the place where Robert Rodriguez holed up to earn the $7K he spent making El Mariachi.

Experiment test subject

[LarsWestergren]

I volunteered as a test subject a couple of years ago, several times. Partly because of the money (though you didn't get that much), but also, I guess, for the thrill of it (I wouldn't do it today).

Most of the experiments were totally harmless, but I have a couple of good horror stories. One experiment was a medicine for lowering blood pressure. It worked let me tell you, I almost passed out when running up some stairs the second day, and I'm normally fairly fit. It also contained beta-blockers, which turned out to give me horrible nightmares. Serveral nights I dreamt of being paralyzed, drowning while being tied up, buried alive etc. When waking up from the nightmares I was panicking, but I had problems moving. My body felt sluggish, and my heart was punding very hard but slow, though it *felt* like it should be racing.

A lasting positive effects of the experiments was that I lost my phobia of needles and blood after giving blood samples once every hour for 24 hours.

Desperation?

[catdevnull]

I suppose if there's an experimental drug out there that needs testing and it's aimed at my particular affliction/malady, I'm game for it if the docs can't do much for it with exhisting medicine or techniques. [And the side effects aren't worst than the disease--such as 'anal leakage'].

But, then again, there ain't no cure for the summertime blues.

Re:Its your life

[dustman]

How exactly are "crack, PCP, etc" automatically liabilities to others?

In exactly the same way drinking and driving is a liability to others.

You're not going to run down some schoolkids every time you drive after a sixpack, and you're not going to kill random strangers every time you get juiced on PCP, but you're statistically an unacceptable liability.

What is a doctor?

[qualico]

Next time your in a doctor's office, ask to see their drug indications guide.
You should be given a thick manual with pages of fine print on all the available drugs and the interactions/warnings of each.

The scary part is that it will be choked full of advertising.
For example; notice the thick tabbed glossy insert for "Viagra".

This may not be as fraudulent as this:
http://www.whistleblowerfirm.com/pharmaceutical-fr aud/ [whistleblowerfirm.com]

However, it does beg the question, "What is a doctor?"
If they are being swayed by advertising and free samples, than they are nothing more than a sales agent.

That be said, there are no doubt a class of doctors who see beyond this garbage and choose to educate themselves to offer an unbiased and professional service for their clients.

Good on ya, if you have found the later, otherwise you might as well just subject yourself to experimental meds.

Re:Its your life

[stanleypane]

No medicinal value? Cocaine was once used as a local anesthetic. What do you think helped spur the creation of synthetic drugs such as novacaine or lidocaine?

Ditto for PCP. It was originally procuded as an anesthetic for humans later used by veterinarians. Now, neither uses them because of their potential for abuse. Ever heard of Ketamine? Another popular anesthetic used by vets. It is in the same family of drugs as PCP.

Re:/. abbreviation

[guitaristx]

Are you referring to your own subject?

Re:If nobody voulnteers no cures will be found

[Austerity Empowers]

Provided the volunteers are informed of the risks of their choice by an independent medical expert. New-age/prayer treatments, or radical new drug treatments tend to sound attractive when argued by their supporters, but aren't always good choices.

If I had a terminal condition I'd ideally like my doctor to lay out all my options, and explain them fully. This includes the conventional (but probably not so effective or pleasant), and the unconventional (and not have to worry that I or my family will sue him later). The reality is that traditional doctors can be a bit CYA, while the research doctors may be inclined to not tell me what I need to know. The laws and our social behavior are set up in such a way as to continue this situation.

The next best option is to do my own research and run it by a couple conventional doctors and see how their answers disagree. It's not perfect but it's a step towards the ideal. This facility would seem to offer that, provided people who use it consult with an actual medical expert.

Bottom line, if I am dying from a particularly untreatable form of cancer, I may be inclined to try something new. I just need to know what the options are, and what the odds are. Only I should be allowed to gamble with my life.

Re:Be careful

[guildsolutions]

My mothers life was also saved in such a way, it was nearly 16 years ago and she's still living today. My father and our family lawyer signed tons and tons of papers releasing the hospital/doctors from malpractice and other legalities... But they finally got her heart started and... Thankfully, she's still with us today... 16 years later.

As I said above, these drugs have to be tested on someone. When the time comes to say.. "Your dead.. but we can try this and see if you will be alive.. well, Lets try it!"

I would rather be alive than dead anyday, even if I do go to the place above, and I still have my mother here today.

What about the comon commercials now?

[part_of_you]

We already have seen the result of such testing
Commercials like these...

"....Most comon side effects include stomach ache, vomiting, diareah, abdominal cramps, and loose stool. Doctors advise...." bla bla bla

Also you can read here [pacificresearch.org].

What people don't understand, is that there has to be a double-blind test done on every medicine that will be produced by the medical industry. If it is not the medical industry that's putting it out, then they have to tell you about all of these side effects. Testing in such ways is for the good of the economy, not the humanity.

Health misinformation can be very dangerous.

[nilesh_tms]

Misinformation on the internet can be very dangerous. Things like the Typing Injury FAQ are probably more harmful than good. RSI tends to be more of a psychosomatic issue [harvard.edu]. Sites like the Typing Injury FAQ reinforce the false idea that it is physical problem.

I say this both from experiencing it for myself and years of research into "RSI" (while I had the symptoms of). The only thing that ever made sense and was able to cure me was John E. Sarno's book "Mindbody Prescription." Do a Google search for "sarno tms [google.com]" for more info (though the link above on the Harvard site [harvard.edu] is the best starting point to understand what he is talking about).

Take random health information on the internet with a grain of salt, especially since it can cause you to exhibit psychosomatic problems if you are prone to it (which more people are than you would think).

I know this is a controversial idea, but please at least read all of the document I linked to and give it a chance.

But we do this already

[Ars-Fartsica]

Every day laypeople put drugs in their bodies, some of which have been later determined to be harmful, often not by research performed by doctors, but simply by observations over time. Note also I specifically stated "mentally fit", by which it is implied the person has some understanding of what they are doing, and the risks involved. This really isn't that radical, there have been many cases whereby rational individuals simply cannot afford to wait for the FDA.

Re:Its your life

[Frank T. Lofaro Jr.]

Most people that need experimental drugs are in no shape to be driving a truck.

Heck, even if one was on such a drug and physically capable, they wouldn't pass the medical requirements. You need a certain level of health to be allowed to drive a truck.

Re:Its your life

[vorpal22]

The reason people's freedoms in this regard are limited, is because their actions, over time, inflict a financial burden upon society that the individual does not pay for.

I disagree with your claim for a number of reasons.

First off, if you look around at a historical account of the formation on the war on drugs, you'll see that it stems largely from the general racism towards the Chinese, the African Americans, and the Mexicans during the early to mid 20th century.

Secondly, many activities that we partake in daily, over time, inflict a far, far more disastrous financial burden upon society that the individual does not pay for. Examples? Alcohol, tobacco, excessive unhealthy / fast food consumption, lack of exercise, etc.

Am I free to refuse to contribute my tax / insurance dollars towards your health care because I disapprove of your lifestyle? If I don't think your exercise regime is sufficient, or I feel that your diet doesn't meet my standards of healthiness, am I free to request that you pay your own hospital bills?

I daily engage in a good 40 minutes of cardiovascular exercise. I eat naturally - opting to completely avoid unhealthy fats and artificial ingredients - and organically, when feasible. I also choose to use certain drugs, usually illegally, because I've spent man-months researching psychopharmacology, neuropharmacology, ethnobotany, etc. and feel that the substances that I do use offer far more benefits than risks. My doctor is well aware of my drug consumption and condones it, feeling that it is probably far more beneficial in terms of relaxation, spiritual growth, etc. than it is detrimental.

Experimental drugs vs. tried and true alternatives

[vorpal22]

Drug law and the pharmaceutical industry both baffle me completely, in a theoretical sense and from personal experience.

There seems to be a whole branch of the pharmaceutical industry that is interested in deriving new medications to substitute for older tried-and-true medications, because the older meds often demonstrate "positive side effects" that we somehow view as undesirable.

What we're ignoring is that while the newer medications may eliminate the positive side effects (which may be addictive, or encourage abuse of medications, etc), these are not just vanishing; they're often being replaced by negative and potentially dangerous side effects.

From my own dealings with the medical industry, I present several examples:

• In 1996, still a teenager, I was cursed with some terrible, painful, and scarring cystic acne. I went to my doctor at the time and requested tetracycline. He instead gave me Accutane as he was hesitant to prescribe antibiotics for this condition. Several months later, for no situational reason, I became suicidal and tried to kill myself. Suicidal tendencies are now a well-known side effect of Accutane.
• In 1999, I developed a debilitating case of Generalized Anxiety Disorder. My doctor did not want to prescribe me benzodiazepines (very effective anxiolytics), instead preferring to give me paroxetine (Paxil). Result? It induced, within hours, panic attacks in me. Prior to that point, I had never had a panic attack before. It was determined that I was one of approximately 7% of caucasians deficient in the CYP450 family of liver enzymes, explaining why the medication demonstrated effects within hours instead of within days. This resulted in me also developing Panic Anxiety Disorder. My doctor then wanted to give me imipramine, which had a whole host of negative side effects, including instant death in a small percentage of users. I finally went to see another doctor, who was happy to prescribe me the benzodiazepine alprazolam (Xanax), which worked brilliantly and allowed me to live my life and engage in a cognitive behavioural therapy treatment program to learn long-term anxiety management skills. Note that in dealing with long term users of Paxil, I've noticed that many report that Paxil withdrawal is far worse than benzodiazepine withdrawal despite the fact that Paxil is supposed to be "non-addictive".
• I pulled a muscle in my lower back in late 2000. The doctor I went to see did not want to give me muscle relaxants for it as he thought they were too addictive, so instead, he provided me with celecoxib (Celebrex). I was in so much pain and so unable to do anything from the stiffness that I was unable to protest, and while it worked, during the treatment I discovered that Celebrex was so new a medication that it had only undergone a couple of clinical trials and had rushed to be released. I felt thoroughly like a guinea pig, particularly in light of the fact that several years later, Celebrex has largely been yanked from the market as it can cause possible heart problems.

The list can go on: Ultram invented for pain in lieu of the opioids (despite the fact that it's still very addictive), Ambien invented for inducing sleep instead of barbiturates and benzodiazepines (because it was, and still is assumed to be safer - ignoring the fact that it can and often does cause dramatic hallucinations at standard prescribed doses).

Personally, when I have severe pain, I want codeine or morphine. When I need to be sedated, give me some Valium. Don't try to haul this new, safer, poorly researched crap on me. Opiates, for example, have been in use for hundreds or thousands of years, and are well understood. I'd be much more likely to put my faith and comfort in them than some experimental drug that's but a couple years old.

Be involved!

[Pedrito]

Whoever described doctors as "techs" was right on. Anyone who isn't actively involved in their own treatment is being absoutely careless. I decided this years ago, but it came crashing home when I got misdiagnosed by 3 doctors who said I had asthma based on very sketchy evidence. I was promptly put on a steroid inhaler for daily treatment and an albuterol inhaler for emergencies.

Now, the reason I went to 3 other doctors (the 4th being the one who correctly diagnosed my problem), is that the albuterol (a stimulant that opens the airways) was making my attacks WORSE, not better. But the second and third doctor said it was all in my head and to stick with it.

It turns out I was actually having panic attacks. So the last thing I really needed was to be sending a stimulant directly into my lungs which is just shy of injecting one right into your veins. I actually stopped taking the albuterol shortly after the second idiot doctor and just kept going back saying the same thing until I finally got a doctor who was willing to actually check if I really had asthma.

Now this is just a single example, but it's also not the first misdiagnosis I've had. I've been prescribed antibiotics for flu. I've been told I had food poisoning when I didn't.

There are some good doctors out there. There are a number of really, really, bad doctors out there. And most doctors, good or bad, are rarely willing to take the time to really investigate their patients' problems these days. You simply can't count on doctors to do the homework on your condition. Someone should be doing the homework. The doctor can run tests, but what if they're not running the right tests? You need to do at least some homework and be willing to make suggestions to your doctor. And if that bugs your doctor, find a new one.

I know we can't all get medical degrees and it should be the doctors' job to figure all this crap out, but the fact is with HMOs and the like, doctors aren't doing their jobs. They're working on a factory line and getting through as many patients as they can as quickly as they can.

Little Boys & Hammers

[nido]

You know what they say about a little boy with a hammer, right? "To a little boy with a hammer, everything is a nail."

Doctors are like help desk technicians - you come to them with a problem, they have tests they can perform, and in the end they try to help you fix whatever's ailing you.

Doctors are like little boys with two hammers. In the end they try to help you... by using the two tools they learned about in medical school: Drugs and Surgery. Sure, they learned a little bit about other topics, but the vast majority of their focus is on perscribing drugs and surgery.

What else would you expect from a profession that is composed of the ideological heirs of bloodletters & mercury salvers?

In a free market, if a profession becomes obsolete, it withers away to become a quaint footnote in a history text. In the united states, we have lobbyists to prevent that from happening to well-connected groups. Just make your new, more effective competition "illegal". Consider:

100 years of Medical Robery [mises.org]
Real Medical Freedom [mises.org]

Dr. Andrew Still 'discovered' his manipulation techniques after he was powerless to prevent several of his children from dying from... meningitis, iirc. He started a healing discipline called 'Osteopathy', and set out to teach others his techniques. Establishment doctors chased him out of town after town (*1) - until he finally found a place to stay and teach.

The real difference between Osteopathy and Allopathy is between their health models. An allopath (99% of M.D.s) believes that a body's symptoms are the problem, and gives his patients substances which counteract the symptom. An osteopath believes that a body is self-regulating and self-healing, so long as everything needed is in place. So, an osteopath's (*2) goal is to remove all a body's impediments to healing. A core tenet of Osteopathy is that Structure and Function are interrelated - hence the importance of applying appropriate adjustments to the body's structure (spine, bones, muscles and tendons) to a body that is not functioning properly.

The difference in treatment outcomes (between Allopathy and Osteopathy) is startling. Quoting from the Cranial Academy [cranialacademy.org] website:

For example, common sense dictates that if the lungs are impeded by ribs, a diaphragm or a spine that is not moving well, breathing will be hindered. If breathing is hindered, the body's immune functions such as lymphatic drainage will not be working well, and healing will be delayed. This observation led Dr. Still to manipulate his patients daily during influenza epidemics.

It is recorded in literature that 21,000,000 people died worldwide in the flu epidemic of 1917-18. Medical hospitals in America reported a 30 to 40 percent mortality rate. However, osteopathic patients had a mortality rate of less than one percent. (emphasis added)

Now imagine you're in a profession that's just been made obsolete. Is it easier to start over and learn to become effective, or to lobby the legislatures to make "licensed" members of your profession the only group who can do certain procedures ("diagnose", "perscribe", perform surgery, etc)? Guess which one won out.

And so, I agree with you - Doctors really are like help desk technicians. They're fine doing what they're trained to do (perscribe drugs), but if a problem comes up that's outside the scope of their training, they're worthless, and you'll get put onto the magical medical rollercoaster, going from specialist to specialist to specialist, never getting satisfactory result. It's like going to the helpdesk with a problem, and all they ever tell you to do is "reboot the computer".

I've gotten off the rollercoaster and have taken charge of my own health. I seek out qualified consultants when neede

Re:Little Boys & Hammers

[nido]

But, think about this: if "conventional" medicine is really so bad, why does it work so well?

You'll have to excuse me - I think this is funny. Allow me to explain.

My grandmother was diagnosed with "Multiple Myeloma" sometime around last thanksgiving. Her doctor gave her 6 months to live. As I understand it, it's a type of blood cancer. Grandma was always one to adhere to "conventional" treatments. She went to the so-called "best-of-the-best" medical clinics (Mayo Clinic), took their chemotherapeutic drugs, went for her weekly tests & injection, every couple of months went for a red blood cell transfusion. All in the hopes of "curing" her of blood cancer.

About two or three weeks ago I took her out to the clinic to get a PICC line (permanent IV line, as a catheter that runs up the arm into the heart) inserted, so she could start an IV chemotherapeutic regimen. She got some blood tests done, and after several tries inserting the PICC line (an interventional radiologist finally succeeded using his fancy X-ray machine to guide the line into place), we got the word that Grandma's blood counts (platelets, red blood cells, etc) were too low to start the chemotherapeutic regimen.

While I was sitting around with Grandma, I told her how I'd stopped by a hospice office a little while back, and how their representative had responded to my assertion that Mayo's was looking at Grandma like she had big golden dollar signs plastered all over her (as she's covered by Medicare, and medicare will pay for just about anything an M.D. wants to charge for). I'd been told, "We have doctors who've said, 'you've got to get [patient X] away from [doctor Y], he'll CHEMO HER TO DEATH!'". I told Grandma this, and she was like, "hey, yah, hospice. [Friend Z] did hospice, and it was just fine for her. I'm tired of this bullshit."

The next day I took grandma to the hospital for a blood transfusion. They took a bone marrow biopsy while we where there (NOT a pleasurable experience) to see how much her cancer had progressed. When the results came back, Grandma's bone marrow was 90+% cancerous. So her doctor refered her to one of the area's larger hospice organizations.

She started hospice care a week ago today (Monday). She died yesterday morning (Sunday). About six months exactly.

I don't know what "conventional" medicine did for grandma. I suppose that it kept her alive for a few more months, but having been around Grandma for most of those months, I don't think she thought they were worth living. You see, before Grandma died yesterday morning, she was suffering. And "conventional" medicine did nothing to alleviate her suffering. They sucked Grandma dry for all they could get Medicare to pay for, and when they couldn't justify charging for anything else, they gave up on her and let her die. Which really wasn't so bad. The profiteering bastards should've just stayed out of it, and Grandma could've side-stepped at least 4 months of misery.

When I take 10mg of loradatine (Claritin), my allergies clear up.

Allergies are just a symptom. Loradatine functions such that the allergic response is repressed.

If I had allergies, I would wonder why. After learning why, then I'd take measures to cure myself of my allergies. I've read various things on allergies - they could be a nutrient defficiency, a triple-warmer response, etc. If I knew that I was prone to allergies because I was starving to death, I'd take measures to insure that I was well nourished.

I can feel the effect - and, more importantly, double-blind tests can measure the effect.

Apparently you're satisfied with alleviating your symptoms. I suppose you've put a piece of electrical tape over the "check engine" light in your car, too?

You have neither described the mechanism nor provided evidence that your method works.

I'm satisfied with the treatments I've received from a Cranial Osteopath. My TMJ (jaw-joint,