Please tell the tale

After being bedridden for 3 1/2 months, I was diagnosed in May 2001 with "atypical cystic fibrosis". My doctor informed me "people like you don't get well -- symptom management is the name of the game". But I have two sons. Since it is genetic, they tested both of them. I told them which child had it and which didn't before they ran the test. My oldest has the same diagnosis I have and had not been on antibiotics for over three years at the time of testing. So when I was told "people like you don't get well", I replied "It may be true that I will spend the rest of my life fighting off the next infection, but This particular infection has to GO as it is killing me." My doctor physically took a step back and looked like I had slapped him in the face.

I spent the next five years trying to figure out what we were doing right that my son was so healthy and talking to people in the alternative health scene who seemed to have some clue. I gradually made changes and developed a mental model for what was going on. For that initial five years, I intentionally avoided joining any online CF forums or otherwise making any strong connections to the CF community. I didn't want my analysis of what was going on to be contaminated by the clearly failed current mental model for what is going on with this condition and how it 'should' be treated.

After five years, I began joining CF lists and forums. Most people on such forums have enormous difficulty believing that diet and lifestyle can do anything meaningful for their condition. Most of them are desperate for A Cure but they seem to all be waiting for a purple polk-dotted dancing, singing pill that will cost gajillions of dollars and have an eight page fold out describing the horrifying potential side effects. Eating right and giving up a few pleasures of North American Affluenza apparently seems to them like A) it can't possibly work and B) the prospect of giving up their couch is more mortifying than the prospect of having their lungs consumed by infection until some doctor decides to cut them out and replace them with the lungs of some perfectly healthy person who died tragically young in the prime of their life.

To each his own. I'm very happy (and comfortable) without a couch, thanks. As of this summer, I am 100% drug free for the first time in nearly nine years. My son has been drug free for close to three years.

Not sure why you were downvoted, except maybe for the ranting.

I was at work all day, so I was unaware of any downvoting. I don't believe I was ranting (unless you mean the remark about the purple polka dotted dancing singing pill). The reality of the situation is as extreme as I describe it. I don't think you can get it across in brief without "hyperbole". I have no reason to believe anyone here would want the long version, with the statistics on death rates (mean age of survival: 37 in the US), drug use (many people with CF are on $3000.00 to $4000.00 per month worth of "maintenance drugs" -- ie when they aren't considered "sick"), frequent hospitalizations (many people are go in once or twice a year for a "tune up" -- ie when they "aren't sick" -- and can be hospitalized multiple times per year as they deteriorate)....and on and on. The statistics are really gruesome.

There is good reason why I get greeted with so much shock and hostility by much of the CF community: The things I say can be done fly in the face of everything these people know to be true. I don't see any reason why my statements would be greeted any more warmly and acceptingly here. <shrug>