I think all of the mentions of oral hygiene are probably missing the mark. For most of us, clearly we are doing **much** more than other people orally, and yet we still have horrid breath much of the time. I am only partially affected, having just one CF gene, but my sister and I have had the thickest mucous of any people I have ever met, and when it gets truly awfully thick, my breath is disgusting, like a rotten animal in the street (not exaggerating). Craig has had to have me put a pillow over my face at some times if I am going to watch television with him, because it was so bad, he vomited. Yeah. That was a thrill.
I had asked my former primary care doc, an infectious disease specialist (I have HIV) if I could be a CF carrier, and if so, if that could be related to my mucous and rot-breath, and he just waved that off, like I was being a hypochondriac. I have gotten that a lot in my life, since I have dermographia, and discovered that on my own, and also tested positive for Epstein-Barr Virus and XMRV (a virus possibly linked to some cancers and chronic fatigue), which viruses I also figured out I had on my own, later confirmed with tests. Hypochondriacs believe they have everything they hear about. I am simply body conscious, because I have always had problems with my breath, with my sinuses, with tonsillitis (removed at 5 with my adenoids), then nasal polyps (my adenoidal tissue, apparently, removed at age 10), then finally an adult diagnosis of asthma, then I had avascular necrosis of my hips (unknown etiology) at age 33, necessitating their replacement. Perhaps the ER steroid I got for an asthma attack in combo with low Ca absorption caused the hip degeneration?
I only JUST got my CF gene result back from 23andme, the genetic testing site, so this is all new to me, but when I looked up the symptoms for the newly created designation CRMD, I was shocked to see a list of basically most of what I have had to deal with forever, and not a single doc had thought to check me out for CF! I discovered saline solution for my sinuses on my own, and ibuprofen for lung inflammation on my own, and OTC guaifenesin to thin out my mucous on my own, and cupped smacking on my chest (or Craig doing it on my back) on my own (before finding out it was also used for CF patients) - and then I got the 23andme result, and again had to figure things out on my own. The new diagnostic criteria specifically states that everyone with even one copy of a CF gene needs to be checked annually, especially since I have had symptoms of no known cause for decades. I am so tired of having to figure things out on my own!!! Maybe I will finally get a medication that can thin my chest mucous, and perhaps a proper look at whatever bacteria or fungus may be causing the stink? Since my parents were both unaffected (as far as can be seen), my own mother is dubious! We have no people with CF in the family (that we know of), but since finding this out, I have told everyone to be screened for this specifically if they think they might have issues.