[ShannonAlther]

> Your claim amounts to refuting the idea that anything new can be done, that the outcomes we currently have is as good as it gets.

Poppycock. The Wikipedia page lists a small handful of promising technologies[0], and there are others not listed there: improvements in organ transplantation and/or cloning would do wonders. I'm particularly fond of the idea of synthetic chloride channels that do the work of the CFTR protein.

But the reason that cystic fibrosis is lethal is because of the mucous. The lethality of the mucous is unrelated to your lifestyle choices, since the lungs of a CF patient are colonized by bacteria that prefer the different type of mucous. This sort of thing is exacerbated by fraternizing with other people who have CF, since they're likely to infect one another.

Over time, the bacteria become resistant to the antibiotics used to treat the disease. So more antibiotics are definitely in order, although that's not the be-all end-all. Again, I'm just saying that lifestyle interventions are almost certainly not effective (I can't even see how).

But there's a critical point in here: sure, Ignaz Semmelweis was laughed at for positing an unusual theory. But so were tens of thousands of others who came up with actually crazy ideas, too many to list. All I'm saying is, just because people disagree with you doesn't mean they're wrong.

[0]https://en.wikipedia.org/wiki/Cystic_fibrosis#Research

[Mz]

You are quoting Wikipedia at someone who HAS CF? Is your knowledge of CF based completely on reading crap online? Because mine absolutely is not.

All I'm saying is, just because people disagree with you doesn't mean they're wrong.

And all I am saying is I have heard this kind of dismissive crap from the "peanut gallery" before. It isn't anything new or novel for people to treat me in a completely disrespectful, dismissive fashion.

So if that is all you have to bring to this discussion, then I think I am done. Because it isn't a good faith tactic At All and I have wasted enough of my life on assholes on the internet who are sure that I am crazy because REASONS, none of which are at all actually logical or scientific, though that is what they are typically claiming as justification for just crapping all over me gratuitously.

[ShannonAlther]

I don't believe I've been disrespectful or dismissive at all. I included the reasons I think you're mistaken, and I've cited Wikipedia because going through the back issues of the NEJM and the Canadian Respiratory Journal for citations would take too long to respond in a timely fashion. If you'd like to explain why you think lifestyle interventions are helpful for other cystic fibrosis patients, please do! I can also grab better citations, if you really want.

[Mz]

No, you are being dismissive. Maybe you don't see that. But there is no point at which you have expressed genuine curiosity.

Your assertion that it can't be done and that I merely have a milder form of CF are simply ways of dismissing the idea and they aren't anything I haven't heard before. If being contemptuous of me personally and dismissive of 16 years of my life isn't your intent and you are genuinely curious, you are utterly failing to communicate that.

[ShannonAlther]

Then I will ask directly: what lifestlye interventions have you implemented, and how are they helping you?

Edit: Nevermind, you said it involved dietary change to handle acidosis. That's great, but is it related to the bacterial problem?

[Mz]

In addition to diet, some of the big things are: I do my best to limit my exposure to plastics, gasoline fumes, etc. I gave up my car and I walk everywhere. I quit my corporate job and I do freelance writing.

I am an environmental studies major, so it sort of stood out to me that some of the infections that people with CF get that normal people are not typically vulnerable to are microbes used to clean up petroleum spills. I came to believe that CF predisposes people to hanging onto certain kinds of chemicals and this makes our tissues vulnerable to infections that normal humans don't typically experience as dangerous pathogens.

Giving up my car helps protect me from exposure to gas fumes and plastic off gassing, but it also means I walk a helluva lot. Walking does a great many good things for the body. You breathe better while walking and it moves lymph, which is how the body cleans its tissues.

Freelancing instead of having a corporate job helps protect me from exposure to germs and gives me a higher degree of control over my environment.

I have done a whole lot of other things, but those are a few that are, I think, easily explained and the value should be easy enough to grasp.

I have run some of my thoughts past a man with a PhD in Chemistry and another man with a PhD in Biology was kind enough to answer some questions for me. He indicated that given what the CFTR does, my thought that people with CF misprocess certain chemicals, including metals, is not simply nuts.

[ShannonAlther]

I'm more interested in immunology than respirology so I know very little about CF. Your idea sounds plausible (I'd give credence to the possibility that reducing stress is part of it, and maybe also the placebo effect), so some day you might be validated. Thanks for talking!