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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?"
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.
Does that even remotely make any sense? Sure as hell doesn't to me...
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.
If "disco" means "I learn" in Latin, does "discothèque" mean "I learn technology"?
If you understand the risks, side-effects, and possible benefits, anyone who is mentally fit should be able to insert whatever materials they wish into their own body presuming no perceived liabilities to others (which would preclude crack, PCP, etc).
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?
500GB of disk, 5TB of transfer, $5.95/mo
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.The rest of the story (including the lab's phone number, if you're interested) can be found at Slaid Cleaves' web site.
Stressed? Me? Of course not. Stress is what a rubber band feels before it breaks, silly.
How is gathering infromation on experimental treatments "circumventing their doctor"? It seems to me that it is better to be informed about potential or experimental treatments for an ailment you are suffering from - if you are interested, bring it up with your doctor. And no, that doesn't mean you should TELL your doctor you want this or that treatment; the idea is to inform yourself, not attempt to replace the years of training and practice a doctor has. Seems like a non-issue to me.
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.
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...and the FDA long ago the tacitly approved this. /. debated...
/. abbreviation?
Can we please refrain from starting sentences with the
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. But also like a tech, doctors are not always perfect - they have to make educated guesses about the problem and can definitely make mistakes. (The analogy continues, but it's important to realize the difference in necessary education before a person becomes a doctor. The risks of a PC crash are nothing compared to an allergic reaction that results in death.)
Now just like calling a computer tech, your visit to the doctor may not be that fruitful. It is possible that you will discover something your physician doesn't - after all, it's your body. In many cases, the doctor may not be willing to spend hours of research time finding a possible treatment for you. It's not surprising that you're willing to spend those hours on Google or other resources.
What I'd suggest is that you do your research and present your findings to your doctor. Work with him or her to approach these findings from an objective (try) standpoint and leave your emotions at the door. If your doctor will not work with you and you believe that one of these treatments may be successful, find another doctor who will be more receptive.
A few months ago, I went to the doctor with what I feared to be bronchitis or pneumonia. He told me I had the flu and prescribed a couple of things. I was skeptical of his anti-viral Rx, and when I went to get them filled the pharmacist told me that these drugs were only supposed to be prescribed on the first or second day of symptoms (I was in my fourth). I felt like the doctor (not my regular, but someone filling in) just gave me something to get me to leave. I did some research, and sure enough, there was no reason he should have prescribed those pills other than to mollify me.
Like telling a user "run a defrag."
I've tried plenty in my time...didn't know you could get paid for doing so...
^_^
____
~ |rip/\/\aster /\/\onkey
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.
Being bitter is drinking poison and hoping someone else will die
- Clinic research is not statistically adequate: testing a medication on 10,000 people will not catch adverse side effects that kill 1-in-20,000 (e.g., kill 1,500 per year when 30 million peapl take the drug). Aspirin given to millions of children for more than 100 years before discovering Reyes syndrome.
- Genetic variations: People aren't genetically uniform. A drug that tests safe and effective on Chinese patients may kill Caucasians (and the Chinese and Caucasians are hardly genetically uniform). For childhood leukimia, there are currently 3 different drugs and they use genetic testing to determine which one to use (the wrong one is lethal).
- Environmental factors: The other substances that you ingest affect drug behavior. Two different drugs may be metabolized via that same pathway and thus if you take both, it slows the the processing of the drug (may increase or decrease the drug's effects). Foods also affect the results. For example., grapefruit deactivates certain digestive enzymes that otherwise limit absorption of some drugs (e.g., you get a higher dose of the medicine if you take it with grapefruit juice).
The point is that there's rarely enough data and too many genetic and environmental variations to judge all the effects. No medicine is ever proven safe. At best, you can create statistical confidence estimates on the likelihood of adverse reactions, but the genetic and environmental factors make these hard to do.Two wrongs don't make a right, but three lefts do.
Next time your in a doctor's office, ask to see their drug indications guide.
r aud/
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-f
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.
[ Disclaimer: I come from a family of MDs, so am probably unusually sympathetic to doctors ]
There is a general problem with medicine in the US, and this story is part of it. The medical system considers us "patients" who are to be taken care of. But the insurance system considers us "customers", who have to manage our own health care, and figure out how it will be paid for.
Here's my latest example: I have good reason to suspect I have high LP-a, a condition that can be detected with a simple, inexpensive blood test. The results are easy to interpret, but the test is not standard procedure, especially for someone my age (young).
The local hospital does the test for $30. My insurance won't cover this test, so it is going to be out of pocket for me. BUT, the hospital won't do the test without a doctor's prescription (read: permission). They say this is so that it gets "billed to your insurance" correctly (even when I say that I am paying out of pocket).
I can go find some doctor (I don't have a regular doctor), pay a few hundred dollars (insurance won't cover this visit), and explain in gory detail why I want this specific test, hope that they don't think I am kook and give me the prescription. Then I pay the $30.
The kicker is that the hospital still won't give me the results. Instead, they will only send them to the doctor, requiring a second visit, and more money I don't have.
So how does this make sense:
- A test is being done on me
- But doctor must consent (no mention anywhere of my own consent, by the way)
- The results, in medical file, are kept hidden from me
- And I am expected to pay for the whole thing
- Yet can not influence any of the process
I have a rare form of cancer for which I am about 30 years younger than the average person with this cancer. I don't expect my doctor to know much about carcinoid because there are so few of us (he has only treated about half a dozen people with carcinoid).
Therefore, I feel it is my job to research as much as possible, find experts in carcinoid with which to consult and the latest paper to forward on to my current doc. Medicine should be a cooperative venture between doctor and patient, never just one or the other.
--Ron
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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. 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" for more info (though the link above on the Harvard site 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.
And then one day she got a phone call: "Stop taking that medicine. Don't take the next pill. Go see your doctor immediately." One of the other patients had died from a side effect of the medication.
But for my mother, it was a real miracle drug. It has put her arthritis in remission for 10-15 years - and that is unheard of in the world of arthritis treatment.
Fen-phen comes to mind as another example. Playing games with stuff that hasn't been well studied may have great benefits, or serious consequences, or both. If the FDA hasn't done due diligence (or if you don't trust the FDA), then you'd better do your homework like your life depends on it. Don't just look for the reports of how wonderful the results can be - look for how bad the downside can be.
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:
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.
Here is the original article:
Let me suggest this as a better rewrite:
I think this is a bit clearer. A general word of advice -- try to put what an article is about in the first clause of the first sentence if possible
Post may contain irony: discontinue use if experiencing mood swings, nausea or elevated blood pressure.
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.