Do you believe in doing every and any treatment and Medication

[dasjsmum]

I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

 

[dasjsmum]

I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

 

[dasjsmum]

I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

 

[dasjsmum]

I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.

I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.

My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).

He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).

I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.

So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

 

[dasjsmum]

I have my son on whatever he needs at the time. Because he stays relatively healthy, I just leave it as it stands. He doesnt do physio much. When he is well he has no cough whatsoever.
<br />
<br />I personally dont see the point in loading the family up with more time-reducing & stressful treatments than needed. He does do exercise though, and my older children both exercise religiously and play sport.
<br />
<br />My son went through a bad patch a couple of years ago (constantly sick for 18mths) and I placed him on GSH plus asked the doctor to put him on Azithro (they wouldnt give it to kids here at the time, but my oldest son had really great responses to it).
<br />
<br />He has been really well since then, so I think the best benefit was from the Azithro (inflammation + biofilm), which allowed the antibiotics to work better. I believe the GSH and NAC have positive benefits too, but because he start Azithro at the same time it's difficult to measure (but I keep him on it anyhow).
<br />
<br /> I also stopped his puffer because they put him on it for no reason, and i read some research that indicated that it made little difference. It made no difference to his health when he stopped taking the puffer (seritide), however my older kids get good benefits from it.
<br />
<br />So he is on GSH and Azithro + magnesium all the time. When he is sick he does Tobramycin and Timentin neds, plus has physio. Ofcourse, he is younger then many of you, and that makes a difference. As I mentioned, my older kids do things differently (BTW, I'm always trying to convert them to things like GSH & NAC, but they are such rebels!).

 

[dbtoo]

I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

 

[dbtoo]

I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

 

[dbtoo]

I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

 

[dbtoo]

I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

 

[dbtoo]

I do the absolute minimum I can to allow myself to do the maximum that I can attain without interfering with my 'normal life'.

 

[Nightwriter]

Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

 

[Nightwriter]

Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

 

[Nightwriter]

Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

 

[Nightwriter]

Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.

Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.

And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.

I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.

She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).

So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.

Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.

Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.

In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.

 

[Nightwriter]

Jennifer, there are a few things that I want to talk about. This is my opinion only based on what I have experienced and what my doctor has taught me.
<br />
<br />Since you talk about antibiotic use, I'd like to start there. First lets start with studies. There are studies that compare people with CF who are on antibiotics as opposed to not being on them, concluding that those taking antibiotics do better. Sure, if you look at only these 2 variables. Taking antibiotics vs. having no treatment. Thus far in the treatment of Cystic Fibrosis, the third variable is treatment for inflammation, asthma and "bronchial hygiene", allergies, chemical sensitivities, and better nutrition - which is rarely addressed and have not been studied. I am treated by utilizing the third variable.
<br />
<br />And if you are asking me for my advice, it is because you know I was on the antibiotic merry-go-round and now I am not. You know that my progression has seen positive changes and my FEV1 has gone up year after year (at the top now probably for me), and my CT scans have improved.
<br />
<br />I was just at my doctor's and I discussed this very thing. This was my question: "Many people on the forum say that they go on antibiotics and their FEV1 goes up, to them "proving" that antibiotics are the answer." I mentioned this to her because I was bothered by the fact that a little boy here was going to be hospitalized only because his FEV1 had dropped.
<br />
<br />She said that she believes that one of the problems is when a diagnosis of CF is given, it automatically means to the medical community that this diagnosis requires the traditional CF protocol. And because the words " CF" is attached to the symptoms, they don't look anywhere else. Asthma and inflammation which is big part of the disease is not being managed. Even though everyone is on some kind of asthma medicine (eg. Albuterol, steroids).
<br />
<br />So when the FEV1 goes down, people are put on antibiotics, rather than addressing the asthma, identifying triggers (the source) of the asthma, allergies, chemicals, foods that have preservatives and chemicals, environmental cleaning up, being on all appropriate meds and anti inflammatory supplements, probiotic use, sinus management, or stressing thinning and mucus clearance, etc. Many people admittedly do not do mucus clearance regularly. My previous doctors never said a word to me about this. One doctor told me he never told me about the Flutter, because compliance is low. If I am not compliant, my doctor will not take care of me. It is a partnership.
<br />
<br />Another big area is the use of steroids. She says that it is essential to use steroids correctly - and this is another area that sorely needs improvement. I have been sick the past two weeks - I received a chemical free cortisone shot and used Zithromax - which wouldn't have been available to me if I were taking it M, W, F. and so far, it has worked well. I do additional "cleaning up" meaning mucus clearance and increase treatments. Many people take bronchodilators without being prescribed inhaled steroids. So this would mean they are NOT dealing with the inflammation that is causing the airways to thicken.
<br />
<br />Now, back to my original question: How about those people who say after IV antibiotics, their FEV1 goes up? My doctor says that it works temporarily. That the antibiotics just treats the "top" layer, reducing the bacteria, but the "bottom" layer of bacteria is there - and it will multiply and then you are in the same place as before. So she would rather treat in the ways that I have already mentioned. My last 3 cultures aren't picking up anything after a lifetime of picking up Pseudomonas, often staph, every single culture usually 2 to 4 strains with high growth.
<br />
<br />In the next post, I will talk about what drugs, supplements, and holistic approaches I am on and how I narrowed down what works for me.
<br />
<br />
<br />
<br />

 

[my65roses4me]

I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

 

[my65roses4me]

I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

 

[my65roses4me]

I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

 

[my65roses4me]

I love this topic!
When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
I have learned over the years that not every treatment is good for every cfer.
I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
So this topic peaked my interest and I will follow it.
Thanks

 

[my65roses4me]

I love this topic!
<br />When other cfers find out how little I do in the typical treatment for cf they look at me like I have worms crawling out of my ears.
<br />I have learned over the years that not every treatment is good for every cfer.
<br />I do not do airway clearance as much I should or want to. That comes from my laziness and I will admit it. But some of that comes from fear of hemoptysis. The vest is a big no no for me because I cannot stay away from my problem spots with it. I have the acapella and dont use it as much as I should. Breathing treatments are my weakness since my massive bleeds and lobectomy.
<br />I take my enzymes as prescribed faithfully, I take zithro every day, I take ADEK every day, aciphex, and my antidepressants.
<br />I cannot tolerate pulmozyme or tobi because of hemoptysis. Although I would like to experiment with tobi again. Its been years since I have been on it. At the time I was doing tobi and pulmo and we couldn't figure out which one was causing so much bleeding. So I stopped both. I am still alittle nervous about tobi though.
<br />So I am one of the few that do not believe that all meds are for everyone. I have learned the hard way that I cannot do all the meds. It took me years to convince my Dr that I am one of those paitents that cannot tolerate the typical med regime.
<br />So this topic peaked my interest and I will follow it.
<br />Thanks
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