Nightwriter
New member
Leah,
While my doctor is not a miracle worker, I am telling you the absolute truth. The part of CF that can be helped is the asthma component of this disease. One of the reasons I am on this site (in addition to the awesome people here) is because my doctor and my boyfriend kept urging me to share my story with others. What is interesting, my doctor is not a CF doctor, but a pulmonary MD. In my posts, I have tried to pass along her way of thinking in hopes that people will urge their own doctors to recognize the importance that inflammation plays in this disease. In other words, no doctor had ever said anything to me about asthma, although I clearly had it. There are people on this site who say their doctors say they don't have asthma, yet everybody seems to be on bronchodilators and inhaled steroids. These drugs are for asthma.Yet they are not tested for asthma or allergies. And keep in mind you can test negative for allergies and still have them. They can't test for everything. And their are no tests for irritants. Things that cause the lungs great inflammation upon exposure.
Other than appropriate asthma meds, nasal rinses and sprays, supplements including quality probiotics, fish oil, NAC and Tumeric, Hypertonic Saline, -- the most important thing is change of lifestyle. If you are taking these asthma drugs, but are constantly exposing yourself to triggers like for example:chemicals, fragrances, foods with sulfites, preservatives, smoke, car exhaust...the drugs are not going to help you.
How many people here have been tested for asthma? Allergies? How many doctors ask about people's lives. How they live? Where they work? My doctor does. She says you have to look at the whole person. How many people or their kids suddenly take a turn for the worst? Sudden coughs, nasal congestion, followed by lung exacerbations? Does their doctor ask them what is new in their lives? Mine does. It requires detective work. Did they move? Any new products? New mattress? Even natural products can make people ill. But when you figure it out, health turns around.For the doctors that don't have the time, their are detailed questionaires they can use.
How many people have carpets, pets sleeping in their beds, houseplants around, clean with harsh chemicals, use frangrance in their personal products? Have vacuums that kick back dust into the air? What about air filters? Do you drive with your windows open?
I could go on, Leah. There is no miracle cure. However if you have CF, chances are you have hypersensitive lungs that constrict and airways that swell with exposure to allergens and irritants. There are no tests for chemical sensitivities, but I bet they bother you. So if untreated, your airways close trapping the bacteria causing infection.
Howm many exacerbations are inflammation and not infection? People on this site have told stories about being on antibiotics and they feel exactly the same afterwoods. It's possible they never had an infection to begin with. My doctor tries to determine this by first asking me if I had any unusual exposures prior to symptoms. Next she looks for swelling and redness in my ears and throat. Because that is probably how my lungs look too. She checks my peak flow. Then I go into protective mode to reduce inflammation. Occasionally a cortisone shot. Avoid triggers more strictly, more breathing treatments, nasal rinses, etc. most of the time it does not require antibiotics anymore. My asthma is fairly well controlled. Of course sometimes infection sets in. And if I "cheat" and do something dumb like go somewhere with a barbecue, I get sick. In fact recently I did a bunch of incredibly stupid things because I was feeling cocky having not taken any antibiotics in 2 years! So I got good and sick. And my doctor was furious at me me for the setback. I'm not perfect.
For those who want to learn more, I will keep posting what I've learned. I can refer you to previous posts. I hope this helps.
While my doctor is not a miracle worker, I am telling you the absolute truth. The part of CF that can be helped is the asthma component of this disease. One of the reasons I am on this site (in addition to the awesome people here) is because my doctor and my boyfriend kept urging me to share my story with others. What is interesting, my doctor is not a CF doctor, but a pulmonary MD. In my posts, I have tried to pass along her way of thinking in hopes that people will urge their own doctors to recognize the importance that inflammation plays in this disease. In other words, no doctor had ever said anything to me about asthma, although I clearly had it. There are people on this site who say their doctors say they don't have asthma, yet everybody seems to be on bronchodilators and inhaled steroids. These drugs are for asthma.Yet they are not tested for asthma or allergies. And keep in mind you can test negative for allergies and still have them. They can't test for everything. And their are no tests for irritants. Things that cause the lungs great inflammation upon exposure.
Other than appropriate asthma meds, nasal rinses and sprays, supplements including quality probiotics, fish oil, NAC and Tumeric, Hypertonic Saline, -- the most important thing is change of lifestyle. If you are taking these asthma drugs, but are constantly exposing yourself to triggers like for example:chemicals, fragrances, foods with sulfites, preservatives, smoke, car exhaust...the drugs are not going to help you.
How many people here have been tested for asthma? Allergies? How many doctors ask about people's lives. How they live? Where they work? My doctor does. She says you have to look at the whole person. How many people or their kids suddenly take a turn for the worst? Sudden coughs, nasal congestion, followed by lung exacerbations? Does their doctor ask them what is new in their lives? Mine does. It requires detective work. Did they move? Any new products? New mattress? Even natural products can make people ill. But when you figure it out, health turns around.For the doctors that don't have the time, their are detailed questionaires they can use.
How many people have carpets, pets sleeping in their beds, houseplants around, clean with harsh chemicals, use frangrance in their personal products? Have vacuums that kick back dust into the air? What about air filters? Do you drive with your windows open?
I could go on, Leah. There is no miracle cure. However if you have CF, chances are you have hypersensitive lungs that constrict and airways that swell with exposure to allergens and irritants. There are no tests for chemical sensitivities, but I bet they bother you. So if untreated, your airways close trapping the bacteria causing infection.
Howm many exacerbations are inflammation and not infection? People on this site have told stories about being on antibiotics and they feel exactly the same afterwoods. It's possible they never had an infection to begin with. My doctor tries to determine this by first asking me if I had any unusual exposures prior to symptoms. Next she looks for swelling and redness in my ears and throat. Because that is probably how my lungs look too. She checks my peak flow. Then I go into protective mode to reduce inflammation. Occasionally a cortisone shot. Avoid triggers more strictly, more breathing treatments, nasal rinses, etc. most of the time it does not require antibiotics anymore. My asthma is fairly well controlled. Of course sometimes infection sets in. And if I "cheat" and do something dumb like go somewhere with a barbecue, I get sick. In fact recently I did a bunch of incredibly stupid things because I was feeling cocky having not taken any antibiotics in 2 years! So I got good and sick. And my doctor was furious at me me for the setback. I'm not perfect.
For those who want to learn more, I will keep posting what I've learned. I can refer you to previous posts. I hope this helps.