Nightwriter
New member
Mary,
I have been in your boat and know what it feels like not to know how to get out of the cycle of being sick all the time, taking antibiotics, and then repeat.
The only way this will change, is if you change something in the equation. If a doctor is NOT helping you, you must seek other opinions, until something changes.
You have a few clues: "Your lungs are closing." "Bronchitis that turns to Pneumonia." Whether you have Diabetes or not, if your lungs are not open, you will keep getting bronchitis because it traps mucus with bacteria. The asthma component of CF is real, even though many doctors refuse to recognize it. Your airways get inflamed and swell, trapping mucus.
Prednisone, or Advair cannot counter powerful triggers or sources of inflammation. My doctor always says that people have to do detective work. For instance, if you live or work in an environment that causes inflammation in your lungs (the very definition of bronchitis), cortisone isn't enough. You've got to find the source or sources that are making you sick.
First, you need to have allergy testing, Ige blood levels (which if high, can be a clue to not only allergy, but identify whether you are chemically sensitive), asthma testing with pre and post bronchodilators.
Next you can learn about how allergies and chemical sensitivities affect the body and wreak havoc on the lungs and sinuses. Have you had a CT scan of your sinuses? I found out I had a 100% blockage on one side which I didn't know -- and that was a source of recurring Pseudomonas infections. Do you do nasal rinses?
Mucus clearance. Are you using the best method of mucus clearing for you. You've got to get the mucus OUT. Not all methods work for all people. I use hypertonic saline and the Flutter -- and I get practically all the mucus out.
Discussing supplements with your doctor. Much you can take that is even being studied by the Cystic Fibrosis Foundation.
If you are interested, I have written about allergies, chemical sensitivities, how to do detective work, and what changes to make in the home. All under the search engine here.
Many times exacerbations are from inflammation and antibiotics will have no effect. I see this all the time on this site. It is very frustrating to take every antibiotic under the sun and have the FEV1 go lower, feel no better, and have to return to the hospital.
I have been in your boat and know what it feels like not to know how to get out of the cycle of being sick all the time, taking antibiotics, and then repeat.
The only way this will change, is if you change something in the equation. If a doctor is NOT helping you, you must seek other opinions, until something changes.
You have a few clues: "Your lungs are closing." "Bronchitis that turns to Pneumonia." Whether you have Diabetes or not, if your lungs are not open, you will keep getting bronchitis because it traps mucus with bacteria. The asthma component of CF is real, even though many doctors refuse to recognize it. Your airways get inflamed and swell, trapping mucus.
Prednisone, or Advair cannot counter powerful triggers or sources of inflammation. My doctor always says that people have to do detective work. For instance, if you live or work in an environment that causes inflammation in your lungs (the very definition of bronchitis), cortisone isn't enough. You've got to find the source or sources that are making you sick.
First, you need to have allergy testing, Ige blood levels (which if high, can be a clue to not only allergy, but identify whether you are chemically sensitive), asthma testing with pre and post bronchodilators.
Next you can learn about how allergies and chemical sensitivities affect the body and wreak havoc on the lungs and sinuses. Have you had a CT scan of your sinuses? I found out I had a 100% blockage on one side which I didn't know -- and that was a source of recurring Pseudomonas infections. Do you do nasal rinses?
Mucus clearance. Are you using the best method of mucus clearing for you. You've got to get the mucus OUT. Not all methods work for all people. I use hypertonic saline and the Flutter -- and I get practically all the mucus out.
Discussing supplements with your doctor. Much you can take that is even being studied by the Cystic Fibrosis Foundation.
If you are interested, I have written about allergies, chemical sensitivities, how to do detective work, and what changes to make in the home. All under the search engine here.
Many times exacerbations are from inflammation and antibiotics will have no effect. I see this all the time on this site. It is very frustrating to take every antibiotic under the sun and have the FEV1 go lower, feel no better, and have to return to the hospital.