[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!

[Mz]

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

Sorry, I missed this earlier.

If you look up studies on biofilm, there is a connection between acidosis (and/or inflammation) and antibiotic resistance. Reversing excess acidity leads to patients becoming sensitive again to a larger variety of drugs.

But there is a lot more to my dietary changes than that. Mucus is a really significant part of the immune function and people with CF have very salty sweat. My view is that sweating out salt at high rates also drags other minerals with it.

The standard wisdom is that people with CF "overproduce mucus" and are "drowning in their own mucus." One study found that we underproduce mucus and I believe this is the accurate interpretation for reasons I have outlined somewhere on my blog. I can find it if you really want to see it.

Salt is a major component of mucus and when you get people with CF producing proper and healthy amounts of mucus, it reinstates a portion of their immune system that is typically down. I consumed a particular brand of salt high in other minerals for some years. It had a significant positive impact on my health. I also lived near the ocean for a few years. There is a non drug CF treatment where they nebulize saline solution. It grew out of the observation that people with CF who surfed had better outcomes.

CF is not really just a lung disease. That is sort of a misconception. It involves all the mucous membrane systems, including the gut and the reproductive tract. Malabsorption, difficulty gaining weight and Cystic Fibrosis Related Diabetes are major elements. Men with CF usually lack a vas deferens, thus are unable to father a child without intervention. Women often also have fertility issues.

The gut is about 70 percent of the immune system. So addressing the gut issues in CF is part of addressing the immune system dysfunction.

The gut gets incredibly out of whack with CF. The high use of antibiotics in patients with CF very often leads to e coli infections. This is often treated by removing the large colon. This is, horrifyingly enough, one of the more common surgeries in the CF community. There is a reason it is called a Dread Disease, and it isn't just what it does to your lungs.

I have also read up on some of the current research into the gut flora. I think the terrible state of the gut and the gut flora is a really major element of the immune problems in CF.

You might be interested in the articles on stunting linked in this post on my blog: http://miceats.blogspot.com/2016/09/jalapeno-with-pepperoni-...

The blog isn't intended to be easily legible to an outsider as a serious work on the immune system. There are two reasons for that. I have been harassed by too many people, so I don't want to position it as a medical blog. It is intentionally framed as a food blog. Second, I want it to be approachable by lay people.

The general format is to talk about I have x issue, I am choosing to eat y food for z reasons. I don't always manage to explain my reasons in every post, in part because it gets very, very repetitive. I eat many of the same things over and over for weeks or months for the same reasons. So, the back story on my thinking is very scattered throughout the blog and hard to find. That is partly on purpose.

Best.