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Hunting Down My Son's Killer

matt.might.net

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Re: Hunting Down My Son's Killer

#221

Post by gcheong »

mattdeboard wrote: post #215
gcheong wrote: post #167

Earlier quoted context omitted.

"That is what parenthood does to you." No, that is what parenthood has done to you. And I'm glad for you but you don't have to look far to find people for whom the effect was less than positive and if I relate more to those people than to you then I would do well to heed their warnings than your espousing of supposed absolute truth. Seriously why is it that parents want to convince others who don't buy into the whole…

... "pronatalist"? Really? Sheesh.

It's true, it's kind of a strange word that I've mainly only seen used in the child-free communities, but is there a better word for the viewpoint that everyone should have kids? "Breeder mentality" just seems too harsh.

http://en.wikipedia.org/wiki/Natalism

Re: Hunting Down My Son's Killer

#222

Post by bobbydavid »

krschultz wrote: post #156
zug wrote: post #120

Earlier quoted context omitted.

I have a genetic disease that shows up in 4/100k people, so rare, but not that rare. Any sizable town has at least a few dozen people with my disease. In my experience, "an order of magnitude better" in specialists means they've at least heard of it, but know nothing about it. Every time I move, I have to spend some time educating my new specialist on the disease. I know damn well that every time one of them excuses…

4/100k is still exceedingly rare. There are probably 100s or more diseases that show up in 5/100k so it's hard to know them all. Meanwhile the doctor probably sees the top 15 diseases all the time.. My girlfriend has a condition that affects 12% of the female population to a varying degree. Some doctors knew absolutely nothing about it. Some were able to solve it easily.

Sounds like bayesian probability.

If the symptoms are 30% similar to a disease that 99.999% more common, and 70% similar to a disease that's 0.001% common, the doctor would still be correct most of the time by suggesting that the patient had the common disease, even though the symptoms were a better match to the rare disease.

Re: Hunting Down My Son's Killer

#223

Post by arn »

CWuestefeld wrote: post #180
arn wrote: post #170

Earlier quoted context omitted.

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").

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…

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

#224

Post by sevenstar »

Mz wrote: post #161
sevenstar wrote: post #127

Earlier quoted context omitted.

Thanks, it looks like the medical industry is trying to bury my post.

I am not part of the medical industry. I run an alternative health site where I talk about my non drug approach to health issues. Doctors generally want nothing to do with me and I have gotten far harsher criticism than what has been doled out here to you. I just happen to believe colloidal silver is bad advice.

Its not. Use it correctly and it works fine.

Re: Hunting Down My Son's Killer

#225

Post by sevenstar »

GigabyteCoin wrote: post #154
sevenstar wrote: post #127

Earlier quoted context omitted.

Thanks, it looks like the medical industry is trying to bury my post.

I would go see a psychiatrist if I were you. Paranoid delusions are some of the first signs of a serious underlying mental problem.

Just like the priests... when you do not have a good answer, start throwing mud? Wallow in your ignorance...

Re: Hunting Down My Son's Killer

#226

Post by Drbble »

CWuestefeld wrote: post #180
arn wrote: post #170

Earlier quoted context omitted.

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").

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…

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

#227

Post by ef4 »

waffle_ss wrote: post #62
fghh45sdfhr3 wrote: post #28

Even though his disease is life-threatening, his seizures are worsening and he continues to lose white matter, we'll need to prove that it's safe. A good argument could be made, that bureaucratic regulators who get nothing if your son is cured, but could get in trouble if something they allow hurts him even more, are partly responsible for slowly killing him. For individuals in a dire enough state, a more intelligent…

I find this to be a very interesting idea, although I'm still a little dubious about it. I first heard it from an interview with famous Libertarian [Milton Friedman][1] (whom I adore) in his twilight years. The self-regulating mechanism of a system like this would be tort law, allowing consumers to sue companies if they haven't done adequate research and testing on their drugs before selling them. I have mixed feelin…

People win class action suits against big corporations quite frequently.

And the pharma industry's own actions show that they know they're vulnerable to torts. That's why they lobbied for laws like the Vaccine Act of 1986, which limits their liability for damage caused by vaccines.

Re: Hunting Down My Son's Killer

#228

Post by run4yourlives »

gcheong wrote: post #204
run4yourlives wrote: post #197

Earlier quoted context omitted.

There are a few people that regret being parents. The funny thing is that if you talk to them you'll find that they've become parents because they though it's something the should do, and not something they wanted to do.

Yes, exactly - and where did this idea that they should have kids come from? What I'm saying is that people need a balanced perspective when deciding and all too often it is the "everyone should have kids" voice that is only heard and anyone that states anything to the contrary is summarily dismissed or berated. That is changing, albeit slowly but I will also be the first to say that at the end of the day if decide y…

I'm not sure where you are hearing the "everyone should have kids" refrain in 2012. Perhaps this is from your parents or friends?

I'd submit too that perhaps a lot of it is self imposed, as witnessed by your comments in this thread that immediately assumed more than one person was of the opinion that we are somehow insinuating you are a lesser person from not having kids.

Outside of your own family, there's not a heck of a lot of pressure to have kids these days. Your family though is - respectfully - your problem. :-)

Re: Hunting Down My Son's Killer

#229

Post by ef4 »

meepmorp wrote: post #146
orbenn wrote: post #84

"Unfortunately, we can't just order a batch and inject Bertrand. We need to get FDA approval, and we'll need Genzyme's cooperation. Even though his disease is life-threatening, his seizures are worsening and he continues to lose white matter, we'll need to prove that it's safe." It's shit like this that makes me hate the FDA.

> It's shit like this that makes me hate the FDA. So, what? You'd prefer no enforcement of basic drug safety testing? There are reasons why we have the controls we do in medical trials, other than just to provide busy work to career bureaucrats and generally make trouble for sick people. There is a process for getting patients access to investigational drugs, but you still typically need to do some paperwork in order…

I don't think this is an approved drug. It's sold as a reagent to laboratories, but not used for anything medical.

Re: Hunting Down My Son's Killer

#230

Post by mattmight »

Mz wrote: post #201
danparsonson wrote: post #198

Earlier quoted context omitted.

Different proteins for different disorders - from what you wrote it seems like you read it as one particular protein that's commonly implicated in many different disorders? Imagine one part of your car was randomly the wrong shape. You'd have Twisted Wheel-Nut Syndrome or Split Spark-Plug Disease or whatever, all of which could be caused by badly copied blueprints for the car.

Sorry I wasn't clear. I am currently looking at info on NGLY1 and trying to parse out its exact function in order to try to understand the commonalities this seems to have with my condition. "Lacks x enzyme" doesn't give me a picture of what functions are missing. I am not a medical professional. I need laymen's explanations of specific functionality, which are quite hard to come by. Thanks for replying.

N-Glycanase is responsible for removing N-linked glycans from misfolded glycoproteins.
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