I have had some great doctors – some not so much – since this started 6 years ago. I developed a continuous and worsening cycle of respiratory infections. The situation built up to a point where I was having nine exacerbations a year. To breathe, I needed high doses of prednisone. Every exacerbation was worse than the one before it. Sinuses full. Constant nose-blowing. Wheezing. Shortness of breath to the point where walking to the next room meant I had to sit down and gasp for air. At one point I was misdiagnosed with Wegeners Disease. That was actually a blessing. Because of the misdiagnosis I became friends with a wonderful group of Weggie Warriors, and I learned the importance of support from other people with the same or similar issues. THANK YOU WEGGIE/GPA WARRIORS!!!
It is impossible to overemphasize the importance of research and not being completely dependent on your doctors. Now I have finally taken things into my own hands, and more or less diagnosed myself. My pulmy diagnosed “mild” bronchiectasis about 3 years ago. He said it should not be causing me so many problems. I went to my allergy doc 2 years ago for a regular appt. She took one look at me and called an ambulance.
While I was in the hospital, a nurse suggested that I try inhaled hypersaline solution after my regular inhaled asthma meds. It did WONDERS for me. I was soon able to get off the neb meds altogether. At about the same time, I noticed my asthma doc did not have bronchiectasis listed. She is an awesome doctor, but information sometimes gets lost from one doctor to another. Anyway – I updated her records and then did some backwards research.
I researched what diseases had inhaled saline solution as a treatment. This led me to Non-Cystic Fibrosis Bronchiectasis. It checked every single box on my list. The syndrome included a vicious cycle of increased mucus production followed by lung infections. It tends to come on from middle age onward and can happen to anyone – but one population that it occurs in most often is women over 60 who have never smoked. That would be me. But it happens at every age.
The only way to reliably diagnose NCFB is via a CT scan. Some signs might show on an x-ray – but probably not. Anyway – all that led me to other treatments, such as breathing exercises and a flutter valve and a daily walk – all things to move mucus out of the lungs.
I also found a medicine that is actually a naturally occurring amino acid that is used frequently for this condition.The inhaled version needs a prescription – but there are OTC pills as well. The purpose is to thin the mucus. Just what I needed. I bought the one called Sinatrol -but have since found a much cheaper and stronger versions – NAC by NOW Foods which I purchase from Amazon. The active ingredient is n-aceytlcersteine. It works much better for me than Muxinex, which tends to solidify the mucus and cause shortness of breath which then lands me in the hospital. Anyway – it helps – A LOT. I have set up a regimen of a daily nasal rinse using a NeilMed bottle, inhaled saline solution 1-3 x per day, breathing exercises, flutter valve and a daily 30 minute walk on the treadmill. Trying to get back to where I was 6 years ago when I was walking for over an hour a day.
I have a PCP who is an integrated medical doctor. She prescribes natural treatment when possible. She put me on a detox diet. She said “You have tried EVERYTHING else and you are only getting worse. You need to try an elimination diet”. It was based on Mark Hyman’s “Blood Sugar Solution” book. For 10 days I eliminated ALL processed foods, grains of any kind, starchy veg, fruit (except berries) and all dairy. A very tough ten days but well worth it.
A nice side effect is that I lost a pound a day. I have also discovered an allergy to grains. I added dairy back first with no problem. I added back all fruit and very moderate amounts of starchy veggies without any issues. I felt so much better, that I decided to stay off grains.
Then Christmas came. I ate two Christmas cookies. I immediately had a reaction that I have never had in my life, except to red dye. I turned as red as a cooked lobster from head to toe. It was a full body, itchy, burning rash. Worse – it was followed by a downturn in my breathing. WOW. I knew immediately that wheat was the cause. Who’d have thought? I never had that reaction until eliminating it for an extended time. I had a similar result a few months later. I ate a boxed soup which I did not realize contained rice starch. I have not dared to try oats.
MY GRAIN-FREE FACE: Be sure to click on this picture to see my face after eating wheat!
Click this picture to see my face after eating grains!
Since eliminating grains from my diet over a year ago, the cycle of infection has stopped completely. My sinuses are no longer clogged and my post nasal drip has disappeared. Now if I cheat or accidentally ingest a grain, I get an itchy, burning rash from head to toe, followed by a breathing downturn. This is enough that I never cheat anymore.
I have been on a continuous round of prednisone for three years, but am lowering the dose by 1 mg every six weeks. It is going well for me.
Anyway – I am no longer sitting around and waiting for the doctors to shrug their shoulders and say to keep on doing asthma meds and prednisone. NCFB is chronic, with no cure – but I am happy that there are non-medicine things I can do to prevent exacerbations. If my docs refuse to give me prescriptions for what I want, I will keep after them. They might not know what I have. But I am convinced that I DO know. It is an empowering feeling!. Keep researching folks!!!
Another thing I did that helped ENORMOUSLY was Pulmonary Rehabilitation. Please go to my Pulmonary Rehab Page to find more detail.
Non-cystic fibrosis bronchiectasis: diagnosis and management in 21st century
Bronchiectasis r us