Mixed news

M

Melissa75

Administrator
I went to a pulmo check-up today.

The good news is that I am going to be evaluated for a 12 month Mannitol trial in people with bronchiectasis. I have been lusting for this stuff since I heard about it from Australians with bronchiectasis on Bronchiectasis R Us. (It is also known as bronchitol, I believe.)

The not-so-good news is that my freakishly high FEV1 is still dropping, despite zumba, "electric" dance, and hiking. I'm down to 106, from 135 in 2000, and 115 last December. I am always a little off (as in not feeling awesome, not in the middle of an exacerbation) when I go in and do spirometry--so that is not the problem.

Anyway, I left some green sputum and have a script for an "old-school" ab (doxycyline) that he wants to try me on.
_________
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
I went to a pulmo check-up today.

The good news is that I am going to be evaluated for a 12 month Mannitol trial in people with bronchiectasis. I have been lusting for this stuff since I heard about it from Australians with bronchiectasis on Bronchiectasis R Us. (It is also known as bronchitol, I believe.)

The not-so-good news is that my freakishly high FEV1 is still dropping, despite zumba, "electric" dance, and hiking. I'm down to 106, from 135 in 2000, and 115 last December. I am always a little off (as in not feeling awesome, not in the middle of an exacerbation) when I go in and do spirometry--so that is not the problem.

Anyway, I left some green sputum and have a script for an "old-school" ab (doxycyline) that he wants to try me on.
_________
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
I went to a pulmo check-up today.

The good news is that I am going to be evaluated for a 12 month Mannitol trial in people with bronchiectasis. I have been lusting for this stuff since I heard about it from Australians with bronchiectasis on Bronchiectasis R Us. (It is also known as bronchitol, I believe.)

The not-so-good news is that my freakishly high FEV1 is still dropping, despite zumba, "electric" dance, and hiking. I'm down to 106, from 135 in 2000, and 115 last December. I am always a little off (as in not feeling awesome, not in the middle of an exacerbation) when I go in and do spirometry--so that is not the problem.

Anyway, I left some green sputum and have a script for an "old-school" ab (doxycyline) that he wants to try me on.
_________
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
I went to a pulmo check-up today.

The good news is that I am going to be evaluated for a 12 month Mannitol trial in people with bronchiectasis. I have been lusting for this stuff since I heard about it from Australians with bronchiectasis on Bronchiectasis R Us. (It is also known as bronchitol, I believe.)

The not-so-good news is that my freakishly high FEV1 is still dropping, despite zumba, "electric" dance, and hiking. I'm down to 106, from 135 in 2000, and 115 last December. I am always a little off (as in not feeling awesome, not in the middle of an exacerbation) when I go in and do spirometry--so that is not the problem.

Anyway, I left some green sputum and have a script for an "old-school" ab (doxycyline) that he wants to try me on.
_________
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
I went to a pulmo check-up today.
<br />
<br />The good news is that I am going to be evaluated for a 12 month Mannitol trial in people with bronchiectasis. I have been lusting for this stuff since I heard about it from Australians with bronchiectasis on Bronchiectasis R Us. (It is also known as bronchitol, I believe.)
<br />
<br />The not-so-good news is that my freakishly high FEV1 is still dropping, despite zumba, "electric" dance, and hiking. I'm down to 106, from 135 in 2000, and 115 last December. I am always a little off (as in not feeling awesome, not in the middle of an exacerbation) when I go in and do spirometry--so that is not the problem.
<br />
<br />Anyway, I left some green sputum and have a script for an "old-school" ab (doxycyline) that he wants to try me on.
<br />_________
<br />Melissa, 34, bronchiectasis (no CF)
 
L

LouLou

New member
Was last Dec. the last time you blew PFTs? I don't think 115 to 106 is very different given the gap in time. Green sputum though....glad to hear you are getting it cultured. Might request they do a MAC test on it...takes 6 wks. Good to do once a year. It's probably very expensive so if dr. pushes back insist.

Great about Mannitol. Still wondering what placebo is on that one. They were sort of secretive in the earlier phases. Have they now released what it is?

Doxycycline works well against my MRSA sometimes. It can screw up your gut so make sure you are taking probiotics. I always find it difficult to take it correctly - 1 hr. before meal or 2 hrs. after. Ugh! Let us know what you grow :)
 
L

LouLou

New member
Was last Dec. the last time you blew PFTs? I don't think 115 to 106 is very different given the gap in time. Green sputum though....glad to hear you are getting it cultured. Might request they do a MAC test on it...takes 6 wks. Good to do once a year. It's probably very expensive so if dr. pushes back insist.

Great about Mannitol. Still wondering what placebo is on that one. They were sort of secretive in the earlier phases. Have they now released what it is?

Doxycycline works well against my MRSA sometimes. It can screw up your gut so make sure you are taking probiotics. I always find it difficult to take it correctly - 1 hr. before meal or 2 hrs. after. Ugh! Let us know what you grow :)
 
L

LouLou

New member
Was last Dec. the last time you blew PFTs? I don't think 115 to 106 is very different given the gap in time. Green sputum though....glad to hear you are getting it cultured. Might request they do a MAC test on it...takes 6 wks. Good to do once a year. It's probably very expensive so if dr. pushes back insist.

Great about Mannitol. Still wondering what placebo is on that one. They were sort of secretive in the earlier phases. Have they now released what it is?

Doxycycline works well against my MRSA sometimes. It can screw up your gut so make sure you are taking probiotics. I always find it difficult to take it correctly - 1 hr. before meal or 2 hrs. after. Ugh! Let us know what you grow :)
 
L

LouLou

New member
Was last Dec. the last time you blew PFTs? I don't think 115 to 106 is very different given the gap in time. Green sputum though....glad to hear you are getting it cultured. Might request they do a MAC test on it...takes 6 wks. Good to do once a year. It's probably very expensive so if dr. pushes back insist.

Great about Mannitol. Still wondering what placebo is on that one. They were sort of secretive in the earlier phases. Have they now released what it is?

Doxycycline works well against my MRSA sometimes. It can screw up your gut so make sure you are taking probiotics. I always find it difficult to take it correctly - 1 hr. before meal or 2 hrs. after. Ugh! Let us know what you grow :)
 
L

LouLou

New member
Was last Dec. the last time you blew PFTs? I don't think 115 to 106 is very different given the gap in time. Green sputum though....glad to hear you are getting it cultured. Might request they do a MAC test on it...takes 6 wks. Good to do once a year. It's probably very expensive so if dr. pushes back insist.
<br />
<br />Great about Mannitol. Still wondering what placebo is on that one. They were sort of secretive in the earlier phases. Have they now released what it is?
<br />
<br />Doxycycline works well against my MRSA sometimes. It can screw up your gut so make sure you are taking probiotics. I always find it difficult to take it correctly - 1 hr. before meal or 2 hrs. after. Ugh! Let us know what you grow :)
 
M

Melissa75

Administrator
Yup, December was the last PFTs for me. I was at National Jewish in Denver.

I am not sure what the placbebo is. I really want the drug, not the placebo...grrr.

Thanks for the heads-up about meal timing. I'll let you know what I grow. The pulmo will do an AFB culture--everyone really wants to pin MAC on me. Heck I want MAC at this point--not really--but at least it would make sense. It is nice to make sense.

What are you taking now for the MRSA? Do you have MAC too?
______
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
Yup, December was the last PFTs for me. I was at National Jewish in Denver.

I am not sure what the placbebo is. I really want the drug, not the placebo...grrr.

Thanks for the heads-up about meal timing. I'll let you know what I grow. The pulmo will do an AFB culture--everyone really wants to pin MAC on me. Heck I want MAC at this point--not really--but at least it would make sense. It is nice to make sense.

What are you taking now for the MRSA? Do you have MAC too?
______
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
Yup, December was the last PFTs for me. I was at National Jewish in Denver.

I am not sure what the placbebo is. I really want the drug, not the placebo...grrr.

Thanks for the heads-up about meal timing. I'll let you know what I grow. The pulmo will do an AFB culture--everyone really wants to pin MAC on me. Heck I want MAC at this point--not really--but at least it would make sense. It is nice to make sense.

What are you taking now for the MRSA? Do you have MAC too?
______
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
Yup, December was the last PFTs for me. I was at National Jewish in Denver.

I am not sure what the placbebo is. I really want the drug, not the placebo...grrr.

Thanks for the heads-up about meal timing. I'll let you know what I grow. The pulmo will do an AFB culture--everyone really wants to pin MAC on me. Heck I want MAC at this point--not really--but at least it would make sense. It is nice to make sense.

What are you taking now for the MRSA? Do you have MAC too?
______
Melissa, 34, bronchiectasis (no CF)
 
M

Melissa75

Administrator
Yup, December was the last PFTs for me. I was at National Jewish in Denver.
<br />
<br />I am not sure what the placbebo is. I really want the drug, not the placebo...grrr.
<br />
<br />Thanks for the heads-up about meal timing. I'll let you know what I grow. The pulmo will do an AFB culture--everyone really wants to pin MAC on me. Heck I want MAC at this point--not really--but at least it would make sense. It is nice to make sense.
<br />
<br />What are you taking now for the MRSA? Do you have MAC too?
<br />______
<br />Melissa, 34, bronchiectasis (no CF)
 
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