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.
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.
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.