5 ms·

I'm all for patient heal thyself. But, I think you should tone down the conspiracy theory style of your site. Doctors aren't all bad - far from it. The medical

by trapper 17y ago

I'm all for patient heal thyself. But, I think you should tone down the conspiracy theory style of your site. Doctors aren't all bad - far from it. The medical profession is trying to help, but in an evidence based way. You may not agree, but that's what the status quo is. It's not evil - it's the only sane way to progress. If you think you know better than the current literature, get someone to research it. Go talk to your local university, get someone excited. Or do it yourself during a summer scholarship. If you are right and can prove it you'll help a lot more people.

Mz 17y ago
Some of that is humor. At some point, I imagine the front page will change. As far as I know, that's the only place where I (jokingly) comment in a conspiracy theory style. But the reality is also that most CF patients are prisoners of the mental models used by medicine. Ex: Zithromax is very commonly prescribed as a prophylactic antibiotic and to control inflammation. It also competes with magnesium. So taking zithromax tends to make one magnesium deficient. Magnesium is an alkaline mineral. Thus magnesium deficiency leads to excess acidity, which leads to inflammation, which promotes infection, for which doctors then prescribe drugs like zithromax. It's a vicious cycle: Once you start taking zithromax, you tend to become dependent upon it because it worsens the underlying issues which cause the thing it is treating for. Most doctors seem to be completely unaware of stuff like that. I have never had a doctor tell me what nutritional supplements I needed to take or what foods I needed to eat to combat the side effects the drugs cause. Getting off the 8 or so prescription drugs I used to take has made me feel strongly that the solutions doctors prescribe -- and which most patients blindly and obediently follow to a T -- are part of the problem. I wish the picture were prettier. But my CF specialist expressed zero interest in what I was doing to get myself well. His response to my improvement was to schedule me fewer appointments because other patients needed his help more. If anyone is going to get well using the information on the site, it will be a grass roots movement. Doing some kind of research on it when it is already helping people (me, my son, others with CF that contact my via email) looks to me like a huge waste of time -- kind of like a recent article about avoiding spending undue amounts of time writing your business plan. Thanks for the feedback. I will make a mental note of it for future reference as the site gets improved. :-)
- trapper 17y ago
  I gathered you must have had some bad experiences with your own doctors. That's unfortunate. There are drug guidelines for a reason: they are evidence based on the current literature. Of course they follow the path with the most evidence behind it. My take would simply be collect some evidence. Then get someone excited. Someone wants to make their mark - this would be a relatively simple study if what you say is repeatable amongst the general CF population.
  - Mz 17y ago
    A) Lots of people with CF are taking between $3000 and $4000 worth of "maintenance drugs" per month -- ie what they take when they "aren't sick". More drugs get added to that if they have an exacerbation. (And many of them are hospitalized once or twice a year.) The idea that drugs are used according to some conservative set of guidelines doesn't really apply when you have a dread disease. I estimate that the US population of people with CF -- a mere 30,000 people -- probably goes through around $2 Billion a year worth of medication. B) I hear back from other people using the information and the feedback suggests it is potentially repeatedly. The issue is that most folks won't go to the lengths I have gone. And I do not believe anyone should ask them to. It needs to be a choice. The site is intended to be descriptive, not prescriptive. I believe the top-down model is part of the problem. So I have zero desire to replicate that model. I would rather do nothing than contribute to the current (clearly failed) paradigm. In recent weeks, someone familiar with the site did become desperate enough to try more than most folks have. Initial results are astonishingly good. This is an individual with an antibiotic resistant infection who was basically out of conventional options. Over time, I imagine word will spread. The way it spreads is important. I'm satisfied with the current direction of things.
    - swolchok 17y ago
      What about the placebo effect?

by trapper 17y ago

Mz 17y ago

Some of that is humor. At some point, I imagine the front page will change. As far as I know, that's the only place where I (jokingly) comment in a conspiracy theory style. But the reality is also that most CF patients are prisoners of the mental models used by medicine. Ex: Zithromax is very commonly prescribed as a prophylactic antibiotic and to control inflammation. It also competes with magnesium. So taking zithromax tends to make one magnesium deficient. Magnesium is an alkaline mineral. Thus magnesium deficiency leads to excess acidity, which leads to inflammation, which promotes infection, for which doctors then prescribe drugs like zithromax. It's a vicious cycle: Once you start taking zithromax, you tend to become dependent upon it because it worsens the underlying issues which cause the thing it is treating for. Most doctors seem to be completely unaware of stuff like that. I have never had a doctor tell me what nutritional supplements I needed to take or what foods I needed to eat to combat the side effects the drugs cause. Getting off the 8 or so prescription drugs I used to take has made me feel strongly that the solutions doctors prescribe -- and which most patients blindly and obediently follow to a T -- are part of the problem. I wish the picture were prettier. But my CF specialist expressed zero interest in what I was doing to get myself well. His response to my improvement was to schedule me fewer appointments because other patients needed his help more. If anyone is going to get well using the information on the site, it will be a grass roots movement. Doing some kind of research on it when it is already helping people (me, my son, others with CF that contact my via email) looks to me like a huge waste of time -- kind of like a recent article about avoiding spending undue amounts of time writing your business plan. Thanks for the feedback. I will make a mental note of it for future reference as the site gets improved. :-)

trapper 17y ago
I gathered you must have had some bad experiences with your own doctors. That's unfortunate. There are drug guidelines for a reason: they are evidence based on the current literature. Of course they follow the path with the most evidence behind it. My take would simply be collect some evidence. Then get someone excited. Someone wants to make their mark - this would be a relatively simple study if what you say is repeatable amongst the general CF population.
- Mz 17y ago
  A) Lots of people with CF are taking between $3000 and $4000 worth of "maintenance drugs" per month -- ie what they take when they "aren't sick". More drugs get added to that if they have an exacerbation. (And many of them are hospitalized once or twice a year.) The idea that drugs are used according to some conservative set of guidelines doesn't really apply when you have a dread disease. I estimate that the US population of people with CF -- a mere 30,000 people -- probably goes through around $2 Billion a year worth of medication. B) I hear back from other people using the information and the feedback suggests it is potentially repeatedly. The issue is that most folks won't go to the lengths I have gone. And I do not believe anyone should ask them to. It needs to be a choice. The site is intended to be descriptive, not prescriptive. I believe the top-down model is part of the problem. So I have zero desire to replicate that model. I would rather do nothing than contribute to the current (clearly failed) paradigm. In recent weeks, someone familiar with the site did become desperate enough to try more than most folks have. Initial results are astonishingly good. This is an individual with an antibiotic resistant infection who was basically out of conventional options. Over time, I imagine word will spread. The way it spreads is important. I'm satisfied with the current direction of things.
  - swolchok 17y ago
    What about the placebo effect?