Subjecting Yourself to Experimental Meds 348
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?"
sentence 1: wtf (Score:5, Insightful)
Ah yes (Score:3, Insightful)
This is just ripe for law-suits galore.
Just wait and watch, until people figure out whom to sue to get the maximum out of. And then we can see this whole thing wither away...
(Yes, I know. I'm quite cheerful on Mondays...)
Its your life (Score:4, Insightful)
Re:sentence 1: wtf (Score:2, Insightful)
what??? (Score:4, Insightful)
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.
Re:Its your life (Score:4, Insightful)
Democratization of Information (Score:3, Insightful)
Personally, I have a strong science background so I feel slightly confident about investigating remedies on my own. I do fear for people with poor educations though. That's one thing that the web is good for - it helps people self-educate.
Re:Ah yes (Score:2, Insightful)
Hell, I live near Johns Hopkins in Baltimore and I can tell you they are *constantly* putting ads in the paper for experimental programs related to drug abuse and various other experimental treatments. Something tells me an institution as such has looked into the possible legal troubles they may encounter before doing anything like this.
/. abbreviation (Score:5, Insightful)
Can we please refrain from starting sentences with the
Trust in Medical Professionals (Score:5, Insightful)
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."
Re:Its your life (Score:3, Insightful)
All medications are experimental forever (Score:5, Insightful)
- 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.Re:Its your life (Score:4, Insightful)
Re:Its your life (Score:2, Insightful)
I bet you $100 that more people are killed by drunks than PCP users, even after you excludie drink-related traffic accidents.
Re:Trust in Medical Professionals (Score:3, Insightful)
While I agree with everything you said in your post, you shouldn't forget that the doctor may also find something that you would never be able to diagnose (in your analogy think of a keylogger that AdAware or SpyBot don't detect). Just because you found something online that you think may help you, you should always remember that the doctors are the experts in the field. And as always, you should get a second opinion for anything really important.
patient directed medicine (Score:5, Insightful)
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
Its not circumventing, it is working with your doc (Score:5, Insightful)
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
SERIOUSLY rolling the dice... (Score:4, Insightful)
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.
Re:Trust in Medical Professionals (Score:3, Insightful)
Always get a second opinion if you don't feel your doctor is giving you the best care you can get. Of course, there are folks out there that simply refuse to believe what doctors tell them so they end up hurting or deluding themselves.
Medical Tourism time... less cost, more ownership (Score:3, Insightful)
While it might not apply to your single-test request, Medical Tourism [www.cbc.ca] might help. In your case, for less than the total cost you mention you might be able to fly or drive to a nearby country and get the same test, but in a way that you own the results. More commonly, medical tourism is used to either get an extensive set of medical tests done for a fraction of the U.S. cost (if you could get your HMO to authorize the set in the first place), or to get specific surgeries or dental procedures done for far less than the U.S. cost.
The well-known m.t. hospitals have the same equipment and safety standards as U.S. hospitals, but much cheaper prices. Plus you get your own data and the hospital room is like a resort hotel, sometimes with beach nearby.
As examples, a friend needed $20,000 worth of dental work done (as estimated by U.S. dentists). His total cost was less than $5,000 in Costa Rica (including plane tix: Costa Rica is known for dental m.t.), plus he got some ecotourism time in the rain forests. Several of the m.t. hospitals in Thailand and elsewhere have had their business skyrocket after 2001: families who used to visit the U.S. for their yearly checkups (Mayo clinic or similar) aren't being allowed into the U.S. (i.e. a drop of 40% from Middle Eastern countries [gulfnews.com]. Stop the most U.S. friendly people in these countries from seeing their long-term doctors and keep their money away from U.S. businesses: great PR and great economic planning, with no appreciable safety benefits. ).
M.T. also allows you to truthfully say you're going off for a vacation when you're going to get elective surgery like liposuction or plastic surgery done. On your return you'll get "Hey, you look better...nice tan."
Re:Insurance isn't. (Score:2, Insightful)
It doesn't make a lot of rational sense -- why should people who often can't afford insurance pay the highest prices? -- but it is an artifact of the way the system is designed. Hospitals set a high fee by default and then negotiate steep discounts with insurance companies. Individuals don't get these same discounts. Recently, there have been plenty of articles in the Wall Street Journal about this and other aspects of health care economics.
Re:Health misinformation can be very dangerous. (Score:3, Insightful)
"In the course of his medical experience, Dr. Sarno realized that TMS is not just limited to musculoskeletal manifestations. Following is a list of conditions which Dr. Sarno believes commonly serve the same purpose. They are conditions which, emotionally induced, can work as a distraction and can be cured through education and awareness.
Low back pain, diagnosed with one or more of the following: Sciatica, Osteoarthritis, Spinal stenosis, Herniated/bulging/degenerated lumbar disc, Scoliosis, Spondylolysthesis, Piriformis syndrome, Weak/inflexible torso or hip muscles, Spina bifida occulta, Spondylolysis, Transitional vertebra.
Neck/shoulder pain, diagnosed with one or more of the following: Osteoarthritis, Pinched nerve, Herniated/bulging/degenerated cervical disc, Whiplash, Thoracic outlet syndrome, Weak/inflexible neck, shoulder girdle, or rotator cuff muscles, Rotator cuff tears, Bursitis, Tendonitis.
Knee pain, diagnosed with one or more of the following: Tendonitis, Torn meniscus, Chondromalacia, Unstable patella, Muscular imbalances around the knee joint, Osteoarthritis
Elbow pain, diagnosed with one or more of the following: Tennis elbow, Tendonitis, Muscular imbalances around the elbow joint, Osteoarthritis
Foot/lower leg pain, diagnosed with one or more of the following: Tendonitis, Plantar fasciitis, Plantar metatarsalgia, Neuroma, Flat feet, Calcium deposit/heel spur, Shin splints, Muscular imbalances around the ankle or foot joints, Osteoarthritis
Wrist/hand pain, diagnosed with one or more of the following: Carpal tunnel syndrome/repetitive stress injury, Tendonitis, Muscular imbalances around the wrist or hand joints, Osteoarthritis
Nerve dysfunction, diagnosed with one or more of the following: Sciatica, Carpal tunnel syndrome/repetitive stress injury, Trigeminal neuralgia/tic douloureux, Bell's palsy
Temporal mandibular joint syndrome (TMJ)
Fibromyalgia
Myofascial pain syndrome
Tension myalgia
Chronic pain
Gastrointestinal disorders: Heartburn/acid reflux, Hiatus hernia, Gastritis, Ulcer, Nervous stomach, Spastic colon, Irritable bowel syndrome, Colitis
Circulatory disorders: Tension headache, Migraine, Raynaud's phenomenon (excessively cold hands/feet)
Genitourinary disorders: Frequent urination, Urinary tract infections, Prostatitis
Cardiac disorders: Rapid pounding heartbeat (paroxysmal auricular tachycardia), Extra (ectopic) heartbeats
Immune system disorders: Allergies, Asthma attacks, Frequent infections, Skin disorders, Epstein-Barr syndrome
Psychological disorders: Depression, Anxiety, Panic attacks, Obsessive-compulsive disorder
Miscellaneous disorders: Dizziness/vertigo, Tinnitus (ringing in the ears), Chronic fatigue syndrome, Laryngitis/spasmodic dysphonia"
Re:I got no insurance (Score:3, Insightful)
It is not nebulous or ill-defined at all, it is quite plainly spelled out in the narcotics laws of your local jurisdiction, which are by definition the local standards for materials that impose a higher perceived cost than benefit. If none of this makes sense to you, try Tierra del Fuego, I hear you can set up your anarchy there for little cost.
Lyme disease, or why doctors suck (Score:3, Insightful)
Went to my usual doc; he tested me for it using the (quite flawed) ELISA test. Came back negative and all other bloodwork was fine. Two months later, I has a bad case of sinusitis, and was given an antibiotic which just happened to be effective against Lyme.
After experiencing a worsening of symptoms (known as a Herxheimer reaction) on the third day of treatment, I started feeling much better. Joint and back pain was reduced almost to zero, headaches were gone for the first time in 10 months or so.
Of course, the doctor said: "you can't possibly have Lyme, you tested negative for it." I told him that I read that the test is not 100% accurate and the NJ state health depertment had even advised doctors not to use it as the sole diagnostic criterion. "Well,
So far, after 10 days of that antibiotic (Omnicef) and a week more of self-administered amoxicillin, my symptoms are 90% gone, but since 2 and a half weeks of antibiotics isn't enough to treat Lyme, they'll undoubtedly come back.
Fortunately, I was given the name of a good specialist, whom I'm seeing in two weeks, and there is still a faint mark from one of the rashes, so there is evidence that I was infected. I suppose that if I were desperate, I could always go to Mexico and get antibiotics or order them through a pharmacy site like Master's Marketing, which is reputable but isn't too particular about prescriptions for non-narcotic drugs.
-b.
Re:Little Boys & Hammers (Score:3, Insightful)
It's certainly possible that Osteopathy has benefits. But unless you can provide the studies that *back that up*, I'm going to stick with what is proven.
It's common for "alternative" medicine believers to tell grandiose stories about how the "establishment" is trying to cover up their mistakes and promote "bad" treatments.
But, think about this: if "conventional" medicine is really so bad, why does it work so well? When I take 10mg of loradatine (Claritin), my allergies clear up. I can feel the effect - and, more importantly, double-blind tests can measure the effect.
Medicine, like all sciences, is an evolving process. We've been wrong about a lot of things in the past, and we're wrong about a lot of things today. But I'd rather take an imperfect system than one that is completely unproven.
"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."
There's another crap argument. You make the statement that it's a "core tenent" without actually backing it up. Where are the studies that *show* that structural adjustments can fix chemical problems? You have neither described the mechanism nor provided evidence that your method works.
Believe what you want. I'm going to believe what's tested and verifiable.
Re:Little Boys & Hammers (Score:3, Insightful)
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.
Man, does this reek of superstition and scam...
You didn't stop for a minute to think what antibiotics, antivirals, surgical excision of a tumor do, right? I'll tell you: they remove the cause of your illness. Symptoms are cured to make you feel better, as well as to provide relief when the initial cause of the disease cannot be treated.
If you got off the magic carpet and looked up "angioplasty" on Google, you'd find out that it's used to actually reopen clogged up arteries, not just make a patient's chest pain go away.
The same goes for many, many therapies and procedures in so-called "allopathic" medicine. You believe in pure superstition, based on utter ignorance of what medicine is today.