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Re:Hunting Down My Son's Killer by CWuestefeld on Tuesday May 29, 2012 @04:35PM (#4039689)
I think I know what you're trying to say: that it's not hard for us to learn some facts, but they're less useful without a broader knowledge of human physiology that an MD would be presumed to have, and we don't. And there's certainly truth to that.

On the other hand, there really are things the lay person can learn and understand well, even in the complex human body.

I have an unusual, if not rare, condition (Crohn's Disease, which GPs now usually seem to have a decent handle on, but that wasn't the case 20-30 years ago). I've had the condition for over 30 years. Barring advancements in science (which I follow anyway) and other possible complications (which I would be discussing with my GP and GI docs anyway, much of what the system forces me to use them for is not only a waste of their time, but problematic for the patients like me because it forces me to wait for an appointment to get the necessary care.

When I have a flare-up, I know exactly what needs to be done. If I walk into a GP's office, or even a GI doc, all they're going to do is rubber-stamp the prescription I know I need, and ask me to come back later to follow up. I already know what I need, the system is just wasting everyone's time, and withholding necessary care.

The thing is that the human body doesn't really follow a strict blueprint: my own deviation from the norm is the reason I'm there in the first place! So by definition, the doctor can't just give me a textbook answer. It all depends on the way the disease affects me personally.

Now, it's true that I may not have sufficiently broad understanding to see when a complication is arising, to handle it specially. But that's no reason to forestall proper care. I'm perfectly capable of starting the treatment on my own, and visiting for further consultation in the timeframe that first available appointment allows. (If such a consultation is so critical, surely getting the treatment rolling is just as much).

But the way care is delivered now, the doctors comprise a priesthood to which we must show obeisance. In my experience, the system could work both more efficiently as well as more effectively if treatment were more of a partnership, with the doctor contributing the deep understanding that he's worked hard for, but a patient also contributing based on the very focused opportunity to learn about his own condition, especially given the unique and personal ways that illness can affect each of us.

Re:Hunting Down My Son's Killer by kellishaver on Tuesday May 29, 2012 @09:35PM (#4040917)
For some people this would work well, and when you do know a lot about your condition, it is very annoying to have to deal with doctors who have to come to and verify conclusions that you have already made.

I have a pretty dense medical knowledge compared to the average person. My mother had a lot of medical issues that I studied in detail. I have several of my own that I have also studied at great length, and I used to be an EMT. Waiting around and going through a tedious process for a new doctor to "catch up" with you is frustrating.

A lot of people aren't like this, though. I have a friend who, after weeks of not feeling well, had, at one time, read pages and pages of research on a particular disease and had convinced herself that this was the thing she had, this was why she was sick, and this was what she needed treatment for. What she failed to neglect was the title of the paper -- she had diagnosed herself with kennel cough.

As much valuable information as there is available on the internet, I also feel like the internet breeds hypochondriacs like nobody's business.

So I don't really think we need a change in the way healthcare is delivered, exactly. I think what we need is more education for would-be doctors about how to better engage and involve a patient in their own care and how to talk to a patient sincerely about their condition and evaluate the people who just googled something vs. the ones who genuinely know what they're talking about, and then how to work with the latter.

Good doctors will do this naturally, but a lot of doctors will take the attitude that they are the doctor, they know best because they have been to medical school. They may well have a better overall understanding of things, which can very well be extremely important when looking at how diseases and medications interact in conjunction with and affect one another. However, there simply isn't enough time for them to become experts on everything. There should be more emphasis on this fact and more instruction on how to work with the patients to make them the experts so that they can be more involved in their care.

I feel like I'm not making my point well, but this is starting to ramble a bit, so hopefully that makes sense.

Re:Hunting Down My Son's Killer by hellerbarde on Tuesday May 29, 2012 @05:16PM (#4039968)
I can't possibly understand the deepness of knowledge you had to acquire to deal with your condition. No way.

This being said, unfortunately, for every awesome, smart and knowledgable person, there are tens and hundreds of people researching their cough on the internet and wasting everybody's time.

That being said, yes, the system could certainly be improved in most countries. A hard part is managing responsibilities. The doctor you go to has the responsibility of giving you sound advice to the best of his (and hopefully the scientific community's) knowledge.

If he did not follow the methods laid out by standard care, he would not be doing that. He would be irresponsible. Of course, there are always things that are on the fringe but would be beneficial, but then again, who knows, he might just kill a group of people down the road because he gave a fringe treatment to the wrong crowd.

Now to the point you rose for your own situation: it seems that your GP seems to be making it fairly simple for you (in a good way). Or was that a hypothetical scenario with the quick rubber stamp and so on?

Re:Hunting Down My Son's Killer by btilly on Tuesday May 29, 2012 @05:29PM (#4040040)
Just curious. Have you tried Helmetic therapy?

I have a friend with Crohn's disease. After 10 years on medication he injected himself with hookworm. He has now been medicine free for over a year with fewer symptoms than he had before.

Re:Hunting Down My Son's Killer by kernelPanicked on Wednesday May 30, 2012 @09:27AM (#4042682)
There was a This American Life/Radiolab story about a guy who rolled his own Helminthic Therapy. If it weren't for the fact that the therapy was illegal (which is a whole other issue) and therefore very difficult for him to get, it would hardly have been a "story." Just an amazing cure for allergies/autoimmune problems. But the story was really in how he had to wander all over Africa shuffling through latrines to get a few hookworms. http://www.thisamericanlife.org/radio-archives/episode/404/e... . It's act 3.
Re:Hunting Down My Son's Killer by ricardobeat on Tuesday May 29, 2012 @06:25PM (#4040317)
Apparently the correct term is helminthic therapy. Interesting.
Re:Hunting Down My Son's Killer by valencourt on Wednesday May 30, 2012 @01:30AM (#4041527)
I gather that that sort of thing mostly has applications where autoimmune issues are concerned.
Re:Hunting Down My Son's Killer by arn on Tuesday May 29, 2012 @04:51PM (#4039815)
I don't see why you can't have the Doc/Pt relationship you are speaking about.

Have you stuck with one GP or GI doc? Have you jumped around a lot? It takes time to build the relationship you are talking about. You can't ask for a "partnership" and then dismiss the other side ("priesthood").

Re:Hunting Down My Son's Killer by CWuestefeld on Tuesday May 29, 2012 @05:18PM (#4039985)
I do keep the same GP and GI docs.

I'm not allowed to have the relationship I describe. Even when I really do know the right answer, FDA laws require me to go to the altar of the MD to get a signed prescription. I'm forced to wait two weeks to get that appointment, even though I know the right answer.

(In reality, the doc is generally willing to call in the script on my say-so over the phone, but he's not supposed to do this.)

Re:Hunting Down My Son's Killer by Drbble on Tuesday May 29, 2012 @08:03PM (#4040655)
Can you get a 1-year refillable prescription? I have prescriptions that are refillable X times in Your months.
Re:Hunting Down My Son's Killer by arn on Tuesday May 29, 2012 @08:00PM (#4040641)
I don't get it. You are saying you don't actually have to go see a doc "in reality" then how are you complaining that you have to see a doctor before getting treated.
Re:Hunting Down My Son's Killer by nitrogen on Tuesday May 29, 2012 @09:50PM (#4040956)
It sounds like CWuestefeld is complaining that the only way to get by is to bend the rules, and therefore, the rules are wrong and getting in the way.
Re:Hunting Down My Son's Killer by rhino42 on Tuesday May 29, 2012 @09:17PM (#4040867)
First, mad props to you for taking control of your situation. Unfortunately, the vast majority of Americans can't (or won't) do that. If americans had control of their own medical actions, they would be even more susceptable to medical advertisements and would ultimately make terrible medical decisions (like, for instance, not giving their children vaccines due to fears about vaccines causing autism).
Re:Hunting Down My Son's Killer by manmal on Wednesday May 30, 2012 @03:18AM (#4041768)
Have you tried mega-dosed grapeseed extract (does it help for you)? I read once that it helps keep Crohn episodes at bay..