So...what the hell's wrong with you, Shooter? • Hacker News Board

Re: So...what the hell's wrong with you, Shooter?

#61

Post by Shooter » Thu, Oct 08, 2009, 11:26 AM UTC

ErrantX wrote: post #26

sachinag wrote: post #13

I am assuming you are an American citizen. If you haven't already, you need to: 1) call your Congressperson's local office (not DC) and ask for someone in constituent services who works with health care issues. Do this tomorrow. If your insurance company is denying you any care, and you have a paper trail, they should help. If your Rep can't help, then contact your two Senators' offices. Generally, Reps are much bett…

It seems awful to me that all of that effort is needed just to make sure your not screwed over by the insurance company :( Or is it just the norm and Im not used to it?

As an example of how frustrating it is: to get treatment covered by a US insurer for some infections (like, say, Lyme) you usually have to have two different tests that both have positive results, in a specific order. You have to test positive on an initial, fairly inaccurate test...and then you have to follow that result with a positive test on a [relatively] more thorough and accurate test. But some of these (patented) tests are based on just a single species of the organism. (There are a couple hundred species of Borrelia, IIRC, which is the spirochete family that causes Lyme. So, if you don't happen to have that 1 in 2XX species of bacteria, then you will likely not test positive in the exact way they want you to in order to 'earn' treatment.) And the longer you've been infected and the more serious your symptoms, the less likely you are to test positive because your antibody response diminishes over time. "You can't just skip ahead to the more accurate and thorough test now, silly, that's cheating." (?!) If you have a regional strain of bacteria that isn't recognized as a cause of 'Lyme', like 'STARI', then you're probably just out of luck completely.

The tests were not even intended for this diagnostic purpose by the CDC, but they are being used that way by insurance companies in order to exclude people from treatment. The tests are meant to be used for statistical tracking purposes only. Oh, and some of the people that are fighting long-term treatment and the development and acceptance of new tests are the very people that hold the patents on the existing tests. There are already more accurate tests available, but insurance companies will simply not accept them.

Re: So...what the hell's wrong with you, Shooter?

#62

Post by Shooter » Thu, Oct 08, 2009, 11:35 AM UTC

bprater wrote: post #5

Possible to get a compressed/TLDR version?

I tend to think some of the interesting bits are in the details, but - tptacek's very kind comment aside - I will try to summarize it all for you...

A tragi-comedy in three acts. Starring 'Shooter', a nobody:

Act I. Extreme Pain (many symptoms, unexplained.)

Act II. Going Insane (frustrating quest for answers, all in vain?)

Act III. Bugs in Brain (correct diagnosis. treatment. dragon slain?)

Re: So...what the hell's wrong with you, Shooter?

#63

Post by shiro » Thu, Oct 08, 2009, 11:35 AM UTC

chrischen wrote: post #45

noonespecial wrote: post #20

Earlier quoted context omitted.

Well, yeah, I know, magnetic resonance is a mighty cool hack. I was just hoping that it could be maybe, you know, a bit smaller . Not costing as much as a first class ticket from NY to Tokyo for a trip through one might be a nice touch as well. Hell, lets just go all sci-fi and get right to the part where there's an iphone app for waving over a person and seeing their insides in full color in real time...

Isn't it much cheaper in countries like in Japan? I heard it was under $100 to get scanned.

In Japan MRI is covered by public insurance. You only need to pay around $60-$80.

Re: So...what the hell's wrong with you, Shooter?

#64

Post by Quarrelsome » Thu, Oct 08, 2009, 11:54 AM UTC

ars wrote: post #37

ErrantX wrote: post #36

Earlier quoted context omitted.

That's interesting. I wasnt directly suggesting it was reason to support a public plan btw. Just that it sounds pretty stinky. I also would add that I think you've got the wrong "problem". control costs by challenging doctors on what they bill, and at the same time not making it hard for people to get the services they need Is never an issue over here [UK] (not just because of the public aspect).

I think in the UK the insurance people tell the doctors what to do. But they hide it well, and it doesn't seem to cause a problem. (Or maybe it just doesn't bother the people as much, the US has a more independent culture.) Could a doctor in the UK prescribe an experimental treatment? Could he prescribe it and get insurance to pay for it? I bet not without a fight. Perhaps the difference is that there, the fight is b…

Uhhhh, we don't have insurance in the UK. Basically the NHS is your fallback, it will (more or less) treat anything that: "negatively impacts your quality of life". However it may not be the very best care and you may have to wait for it (depending on the contention for services in your area and the treatment you need).

If you want quicker service then you can go private and pay for it.

In terms of experimental treatment I know the NHS may suggest it if they are unable to effectively treat you.

Basically the UK system is the American system (e.g. you can always go private) without the suck (if you're broke you still get fixed, just on a slower timeframe).

Re: So...what the hell's wrong with you, Shooter?

#65

Post by Shooter » Thu, Oct 08, 2009, 11:56 AM UTC

arithmetic wrote: post #16

You are extremely brave. Not a lot of us would go through crap seeing so many doctors and hospitals without going nuts. I hope you recover completely soon. Thank you for sharing - somedays I think my life is tough, but these are reminders that I'm way off the mark.

Thank you for your kindness, but I'm not brave. Guys like Hal Finney - in the original HN post that I'm ashamed to have drawn attention away from - are brave. I was just persistent...and then very lucky.

Re: So...what the hell's wrong with you, Shooter?

#66

Post by yummyfajitas » Thu, Oct 08, 2009, 12:21 PM UTC

shiro wrote: post #63

chrischen wrote: post #45

Earlier quoted context omitted.

Isn't it much cheaper in countries like in Japan? I heard it was under $100 to get scanned.

In Japan MRI is covered by public insurance. You only need to pay around $60-$80.

For a low quality scan (resolution about 1/3 what you get in the US). A 2 tesla scan (what you get in the US) will cost the same as in the US (though the government may subsidize it).

I've heard it suggested that Japan got "scan-happy" (patients want a scan, kind of like how US patients want antibiotics for their virus), so they built cheapo MRIs to give them what they want.

Re: So...what the hell's wrong with you, Shooter?

#67

Post by jsteele » Thu, Oct 08, 2009, 12:42 PM UTC

You should definitely try fasting (no food, water only). After a couple of days there should be visible results (You will feel Yourself different).

Another possible advice is to limit carbohydrates (partually replacing them with fats). There is a whole host of possible problems from excess carbohydrates (starting from diabetes, high blood pressure and overweight).

Your health is in Your hands, the doctors can only help if You are fighting disease Youself.

Re: So...what the hell's wrong with you, Shooter?

#68

Post by silentbicycle » Thu, Oct 08, 2009, 12:50 PM UTC

noonespecial wrote: post #2

Dude, that well and truly sucks. I work around hospitals some and every once in a while I get the odd feeling after watching a specialist scratch his head over a fuzzy black and white "slice" made by in imager with a magnet the size of a garbage truck that its all still so primitive . Medicine has a long way yet to go.

At the same time, medicine has come a long way, even over the past century.

My academic background is in history, with a focus on the history of science and medicine, and it's an excellent foundation for optimism.

Re: So...what the hell's wrong with you, Shooter?

#69

Post by mad44 » Thu, Oct 08, 2009, 1:23 PM UTC

Shooter, how did you find this Dr. House? You neglected to talk about this. And I think this is an important piece of information that can benefit us trying to get a resolution for our own mystery illnesses. How do you go about hunting a good doctor?

Re: So...what the hell's wrong with you, Shooter?

#70

Post by justlearning » Thu, Oct 08, 2009, 1:27 PM UTC

I think this note deserves a posterous page - whether you add more stories or not. Just for it's online presence prominence.

imho, you putting your story on the web will help many who are at the initial misdiagnosed stage.

if you don't, I am going to do it (and put your email in the contact). I don't know if I am threatening you or pleading wit you. But please create a posterous - copy the content and email to post@posterous.com.

Edit: of course - i won't do it. it was just a push for Shooter to do it. I would email him if at all I decide.