Do you believe in doing every and any treatment and Medication

Nightwriter · May 8, 2009

Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter · May 8, 2009

Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter · May 8, 2009

Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter · May 8, 2009

Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.

What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.

I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.

The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.

From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.

There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.

A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.

The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).

I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.

I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).

This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....

So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.

Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

Nightwriter · May 8, 2009

Since posting my response above, I have received a few private messages that are along similar lines. I will answer all of them, but I would like to make something clear. You all very interested in knowing what "holistic" things that I am doing.
 
 What does holistic mean? To my doctor it means treating "the whole person." In other words, you can't treat the lungs without treating the whole body. And I know to all of you it means not taking drugs. I take a lot of medications - drugs are a necessity. But it means working with a doctor that will find the "right drugs" for you. That may require second opinions. Including second opinions with an asthma specialist or an allergist if you are getting worse and your doctor does not try anything new.
 
 I also think what some of you mean by holistic is "alternative medicine." I have had some very bad experiences with alternative medicine as well as traditional medicine.
 
 The major reasons for me doing well, in addition to the lifestyle changes and mucus clearance, (this may be one of the most important parts!) is being on the right asthma and anti-inflammatory meds. I have previously written about all that I do and you should do searches with my name - - I have over 600 posts describing my protocol and what meds, supplements and protective measures that are right for me. They may not be right for you.
 
 From what I read here and in your messages to me are that many of you are not compliant. We are all human. I wish I didn't have to do the time consuming things that I do like twice a day nasal rinses. Okay, so this is something that is natural. Will you do this? (I also take prescription nasal sprays). I use the Flutter two to three (if I am sick it's 3) times a day for a half hour or more each time - while I do something I like. Internet surfing, TV, reading... Will you do this? I exercise 4 times a week, by taking classes that I love. Can you find the time to exercise? It helps the immune system tremendously.
 
 There are no magic pills. You cannot achieve any improvement if you are not willing to do all this every single day without fail. Because that one day you skip, the bugs are there waiting to take hold in that thick mucus. One single day! Nothing will work unless you clean up your home, clean up your diet... You don't have time? Do you have time to be sick? This takes a chunk out of your life.
 
 A word about medicines... Since I now know that there is an asthma component - getting to the source of my triggers was essential. I do know what my triggers are and I take lots of asthma medicines like Spiriva (now being studied for CF), Foridil bronchodilator, nebbed Sodium Cromolyn, H.S with the Flutter (or any clearance method like the Vest) and most of my mucus comes out; Asmanex (like Pulmocort), Singulair, Claritin (or Zyrtec, etc) nasal sprays Nasalcrom, Astilin, Nasonex (and similar drugs). Sinus is a big source of infection. I try to eat food without preservatives or chemicals. Organic is best.
 
 The supplements I take are anti-inflammatories including things like fish oil, Tumeric, Vitamin C...again I've written about this. I take NAC. And a 14 strain probiotic (must be refrigerated kind).
 
 I'll talk about being on the right medications. I took Pulmozyme for about 10 years because it is prescribed for CF patients. The studies show positive results. My doctor took me off of it. Why? Because every year prior to meeting her, my lung function went down. Clearly this drug was doing nothing for me and in fact I did better off of it. Yet for some people it works beautifully.
 
 I was so sick at one point I took Tobi all the time. I couldn't even get off of it for 28 day cycles. But once I started the protocol that I talk about all the time, I got off of it. And then I became resistant to it anyway. Getting off of it brought my sensitivity back. Then I was able to use this drug whenever I had a Pseudomonas flare- up. My doctor gives me a cortisone shot to open the airways and then I would take Tobi for 2 - 4 weeks and Cipro (which I also had resistance to for a long time).
 
 This is how I avoided going into the hospital. But she always said that if the Pseudomonas seeped into the lung tissue causing pneumonia, I would have to have IV drugs. But because I am compliant, the infection was always contained. But I did still get pretty sick with awful exercerbations including coughing up blood. As I started to improve, the exacerbations were less and less frequent. Unlike the past where I would end up hospitalized. I still get exacerbations sometimes and I am always able to trace it to a particular trigger, so it is usually due to inflammation, rather than infection. Although it feels the same. Thick mucus, sometimes fever, hemoptysis, fluish....
 
 So I didn't just get off the cycle of constant antibiotics quickly. It took time. Asthma and inflammation getting under control. And as I saw improvements (PFT's rising, less exacerbations, CT scan improving) my doctor kept adding and subtracting drugs (that a doctor has to decide, not you!) It has been 12 years since I am on this protocol and I am always adding new things with my doctor's approval. My culture stopped picking up Pseudomonas (I am not saying it is gone) after I added Hypertonic Saline, NAC, and Tumeric. But without the OTHER things that I am doing, this would not have happened. The H.S. really helps me cough up so much more.
 
 Here are some threads to get you started. Some may be redundant. I suggest under search, you put in words like either supplements, or asthma, inflammation and my name and you should get some ideas by reading the threads.
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=42322
">http://www.cysticfibrosis.com/...atid=5&threadid=42322
</a> <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=6&threadid=37352&highlight_key=y&keyword1=negative%20survival%20rate
">http://www.cysticfibrosis.com/...ive%20survival%20rate
</a> <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=36181&highlight_key=y&keyword1=what%20is%20preventative%20care
">http://www.cysticfibrosis.com/...20preventative%20care
</a>

jdubbs · May 8, 2009

For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs · May 8, 2009

For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs · May 8, 2009

For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs · May 8, 2009

For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.

In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)

I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.

I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.

So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs · May 8, 2009

For me, Zithromax is a no brainer. It's easy, effective, and I can tolerate it without an issue. I consider the risks of not taking it greater than the risks of taking it.
 
 In terms of nebulizing, I tend towards HTS. It's cheap, I can tolerate it, and it's effective. I don't use pulmozyme. It's expensive, and I don't think it's an effective drug for me. (Even if insurance covers it, I feel a little guilty about it.)
 
 I don't do the vest, or any CPT. My main source of clearance is exercise, which I do daily. So, in this regard, I skip out on "every available treatment". My CF is not at the stage where I think the vest would really be all that beneficial. I do use the flutter on occasions when I have a cold, or cannot exercise for some reason.
 
 I also don't use Tobi as directed. I should probably use it more frequently than I do. I worry about resistance, which my doctor thinks is dumb. She might be right. Especially as I get older, it might be a good idea to get the bug before it gets me.
 
 So, no, I don't do everything in the world I could. I definitely pick and choose the treatments that seem most appropriate for my symptoms of CF.

jdubbs · May 8, 2009