While I appreciate the sentiment, I have to take issue with your comments here. I have cystic fibrosis, and have been diagnosed since I was 3. As you surely know, this disease is not the same for everyone, since it is caused by a wide array of genetic defects that manifest themselves differently in each patient.
Beyond this, the major health effects of CF are not directly due to these genetic defects. The main symptom of CF is the build up of thick mucous in the lungs, however the battle against CF is a battle against infection, not against mucous. It's only recently that the role of the immune system has started to be understood. Needless to say, CF is a manifestation of a large, complex system of things, all of which vary from patient to patient, and change dramatically as the patient goes through life.
It's taken decades to unravel the puzzle thusfar, with many roads leading to dead ends. As you surely know, CF was a disease that was supposed to be cured 10-15 years ago. But, it's proven difficult.
There are reasons for hope. The truth is that your particular struggle with CF may have made it possible for you to get well through certain dietary changes, but the fact is this is a complex, ever-changing disease and dietary changes, while helpful, certainly are insufficient for most CF sufferers to feel well.
Decades of medical research have brought about drugs that, after years of study, have proven reliability in increasing FEV1. (I was one of the patients in the Phase II trial of Pulmozyme many years ago.) These have been a godsend for myself and other CF sufferers.
Your blog seems to make many claims unsupported by medical research, and has a long series of hypotheses and theories about how certain things affect yourself and your child. There are a few things that I see in your writing that I suggest you reflect on as part of the reason you are having a time being accepted by the CF community:
- You seem to have an attitude that your solution is so simple, "boring", and hard work, that you've managed to figure out the solution when all these foolish doctors and researchers have had their heads up their asses. It's not easy, and they haven't. This attitude manages to tell CF sufferers that its their laziness keeping them sick. I can assure you all of us work hard and would gladly do what we need to get well if we knew it was possible.
- You play the victim card, alienating anyone who hasn't heard of your blog before.
- You make logical fallacies. You claim that nobody telling you your technique failed is proof-positive that it probably works. You claim that people tell you that they have had success as proof as well. These are classic fallacies in medical research, and is part of the reason medical research is so hard to do correctly.
In order to make a positive impact on the CF community, I'd encourage you to attempt to reach out to researchers and collaborate with them in a constructive fashion. I'd suggest you do the research on what has been learned so far about CF. I'd suggest you educate yourself on biology, genetics, immunology, and basic medicine as much as you can. I hope you can channel your energy into organizing information in an honest, informative manner without having it be tarnished by the various things I mentioned above. Good luck, and I hope you and your son continue to see good health.
Edit: for those interested, I'd encourage you to check out the CF foundation's drug pipeline:
http://www.cff.org/research/DrugDevelopmentPipeline/
The CF foundation has done some good and some not so good things in the past, but this page at least is accurate and up-to-date. VX770 right now stands to be the most promising path to alleviating the symptoms of CF sufferers in a large way.