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mucolyxir
- Thread starter dramamama
- Start date
M
moxie1
Guest
I have pfts tomorrow. I will give a better update then. For now, things are going great. I played tennis the other night (first time in two years) and really did well with all of the running around. Usually I get winded and have coughing spells. I still got a little winded, but I was not coughing at all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's weird, usually when I am not getting up much phlegm, and I am not coughing much, I get worried because I know its down there--just not coming up. Now I am not coughing much and not having much phlegm, but I don't feel tight at all, I have good exercise capacity, and I can take really deep breaths without feeling restricted. I know I am going to be one nervous wreck for those pfts tomorrow!!!
M
moxie1
Guest
I have pfts tomorrow. I will give a better update then. For now, things are going great. I played tennis the other night (first time in two years) and really did well with all of the running around. Usually I get winded and have coughing spells. I still got a little winded, but I was not coughing at all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's weird, usually when I am not getting up much phlegm, and I am not coughing much, I get worried because I know its down there--just not coming up. Now I am not coughing much and not having much phlegm, but I don't feel tight at all, I have good exercise capacity, and I can take really deep breaths without feeling restricted. I know I am going to be one nervous wreck for those pfts tomorrow!!!
M
moxie1
Guest
I have pfts tomorrow. I will give a better update then. For now, things are going great. I played tennis the other night (first time in two years) and really did well with all of the running around. Usually I get winded and have coughing spells. I still got a little winded, but I was not coughing at all. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's weird, usually when I am not getting up much phlegm, and I am not coughing much, I get worried because I know its down there--just not coming up. Now I am not coughing much and not having much phlegm, but I don't feel tight at all, I have good exercise capacity, and I can take really deep breaths without feeling restricted. I know I am going to be one nervous wreck for those pfts tomorrow!!!
mom2lillian
New member
thank you for continuing to post results on this. Does anyone have links to additonal studies done on this? I could not get initial link to work.
THanks!
THanks!
mom2lillian
New member
thank you for continuing to post results on this. Does anyone have links to additonal studies done on this? I could not get initial link to work.
THanks!
THanks!
mom2lillian
New member
thank you for continuing to post results on this. Does anyone have links to additonal studies done on this? I could not get initial link to work.
THanks!
THanks!
Hi guys-
Continuing to use the mucolyxir. Kind of had a bad week last week, but know that it was not related to mucolyxir.
I was on iv in December, but could never get a sputum culture...turns out the drugs they had me on were the wrong ones....and pulmozyme does not help me at all.
Anyway, last week I was able to get A LOT up and got a good culture....it definitely was from DEEP inside my lungs. Believe that was a mucolyxir deal. YAY!! They decided to put me on ivs because just have been feeling more run down over the last couple of months....doc felt it was a good time to do it. As y'all know I have the mycobacterium (even though my last culture was clear) so my doc wanted to see if treating regular pseudo would make me feel better or if we are needng to treat the myco.
I haven't been in the hopsital in three years...before glutathione I was in every 6 months. So, I figured ivs at home was a good thing.....
Anyway, I feel mucolyxir is thinning out my secretions.... Unfortunately, I haven't gotten as much old stuff up as I want to...but Rome wasn't built in a day<img src="">
Definitely notice a salty taste in my mucus rather than an infection taste or acidic taste.
OH, and I had asked to be on IVS BEFORE, the mucolyxir....don't want y'all to think that happened as a result of.... had asked the doc 2 weeks before...thought it was beginning to be time<img src="i/expressions/face-icon-small-smile.gif" border="0">
I will keep y'all posted...
<b>and Becki----</b>
great news....good luck with pfts!!!!
mandy
Continuing to use the mucolyxir. Kind of had a bad week last week, but know that it was not related to mucolyxir.
I was on iv in December, but could never get a sputum culture...turns out the drugs they had me on were the wrong ones....and pulmozyme does not help me at all.
Anyway, last week I was able to get A LOT up and got a good culture....it definitely was from DEEP inside my lungs. Believe that was a mucolyxir deal. YAY!! They decided to put me on ivs because just have been feeling more run down over the last couple of months....doc felt it was a good time to do it. As y'all know I have the mycobacterium (even though my last culture was clear) so my doc wanted to see if treating regular pseudo would make me feel better or if we are needng to treat the myco.
I haven't been in the hopsital in three years...before glutathione I was in every 6 months. So, I figured ivs at home was a good thing.....
Anyway, I feel mucolyxir is thinning out my secretions.... Unfortunately, I haven't gotten as much old stuff up as I want to...but Rome wasn't built in a day<img src="">
Definitely notice a salty taste in my mucus rather than an infection taste or acidic taste.
OH, and I had asked to be on IVS BEFORE, the mucolyxir....don't want y'all to think that happened as a result of.... had asked the doc 2 weeks before...thought it was beginning to be time<img src="i/expressions/face-icon-small-smile.gif" border="0">
I will keep y'all posted...
<b>and Becki----</b>
great news....good luck with pfts!!!!
mandy
Hi guys-
Continuing to use the mucolyxir. Kind of had a bad week last week, but know that it was not related to mucolyxir.
I was on iv in December, but could never get a sputum culture...turns out the drugs they had me on were the wrong ones....and pulmozyme does not help me at all.
Anyway, last week I was able to get A LOT up and got a good culture....it definitely was from DEEP inside my lungs. Believe that was a mucolyxir deal. YAY!! They decided to put me on ivs because just have been feeling more run down over the last couple of months....doc felt it was a good time to do it. As y'all know I have the mycobacterium (even though my last culture was clear) so my doc wanted to see if treating regular pseudo would make me feel better or if we are needng to treat the myco.
I haven't been in the hopsital in three years...before glutathione I was in every 6 months. So, I figured ivs at home was a good thing.....
Anyway, I feel mucolyxir is thinning out my secretions.... Unfortunately, I haven't gotten as much old stuff up as I want to...but Rome wasn't built in a day<img src="">
Definitely notice a salty taste in my mucus rather than an infection taste or acidic taste.
OH, and I had asked to be on IVS BEFORE, the mucolyxir....don't want y'all to think that happened as a result of.... had asked the doc 2 weeks before...thought it was beginning to be time<img src="i/expressions/face-icon-small-smile.gif" border="0">
I will keep y'all posted...
<b>and Becki----</b>
great news....good luck with pfts!!!!
mandy
Continuing to use the mucolyxir. Kind of had a bad week last week, but know that it was not related to mucolyxir.
I was on iv in December, but could never get a sputum culture...turns out the drugs they had me on were the wrong ones....and pulmozyme does not help me at all.
Anyway, last week I was able to get A LOT up and got a good culture....it definitely was from DEEP inside my lungs. Believe that was a mucolyxir deal. YAY!! They decided to put me on ivs because just have been feeling more run down over the last couple of months....doc felt it was a good time to do it. As y'all know I have the mycobacterium (even though my last culture was clear) so my doc wanted to see if treating regular pseudo would make me feel better or if we are needng to treat the myco.
I haven't been in the hopsital in three years...before glutathione I was in every 6 months. So, I figured ivs at home was a good thing.....
Anyway, I feel mucolyxir is thinning out my secretions.... Unfortunately, I haven't gotten as much old stuff up as I want to...but Rome wasn't built in a day<img src="">
Definitely notice a salty taste in my mucus rather than an infection taste or acidic taste.
OH, and I had asked to be on IVS BEFORE, the mucolyxir....don't want y'all to think that happened as a result of.... had asked the doc 2 weeks before...thought it was beginning to be time<img src="i/expressions/face-icon-small-smile.gif" border="0">
I will keep y'all posted...
<b>and Becki----</b>
great news....good luck with pfts!!!!
mandy
Hi guys-
Continuing to use the mucolyxir. Kind of had a bad week last week, but know that it was not related to mucolyxir.
I was on iv in December, but could never get a sputum culture...turns out the drugs they had me on were the wrong ones....and pulmozyme does not help me at all.
Anyway, last week I was able to get A LOT up and got a good culture....it definitely was from DEEP inside my lungs. Believe that was a mucolyxir deal. YAY!! They decided to put me on ivs because just have been feeling more run down over the last couple of months....doc felt it was a good time to do it. As y'all know I have the mycobacterium (even though my last culture was clear) so my doc wanted to see if treating regular pseudo would make me feel better or if we are needng to treat the myco.
I haven't been in the hopsital in three years...before glutathione I was in every 6 months. So, I figured ivs at home was a good thing.....
Anyway, I feel mucolyxir is thinning out my secretions.... Unfortunately, I haven't gotten as much old stuff up as I want to...but Rome wasn't built in a day<img src="">
Definitely notice a salty taste in my mucus rather than an infection taste or acidic taste.
OH, and I had asked to be on IVS BEFORE, the mucolyxir....don't want y'all to think that happened as a result of.... had asked the doc 2 weeks before...thought it was beginning to be time<img src="i/expressions/face-icon-small-smile.gif" border="0">
I will keep y'all posted...
<b>and Becki----</b>
great news....good luck with pfts!!!!
mandy
Continuing to use the mucolyxir. Kind of had a bad week last week, but know that it was not related to mucolyxir.
I was on iv in December, but could never get a sputum culture...turns out the drugs they had me on were the wrong ones....and pulmozyme does not help me at all.
Anyway, last week I was able to get A LOT up and got a good culture....it definitely was from DEEP inside my lungs. Believe that was a mucolyxir deal. YAY!! They decided to put me on ivs because just have been feeling more run down over the last couple of months....doc felt it was a good time to do it. As y'all know I have the mycobacterium (even though my last culture was clear) so my doc wanted to see if treating regular pseudo would make me feel better or if we are needng to treat the myco.
I haven't been in the hopsital in three years...before glutathione I was in every 6 months. So, I figured ivs at home was a good thing.....
Anyway, I feel mucolyxir is thinning out my secretions.... Unfortunately, I haven't gotten as much old stuff up as I want to...but Rome wasn't built in a day<img src="">
Definitely notice a salty taste in my mucus rather than an infection taste or acidic taste.
OH, and I had asked to be on IVS BEFORE, the mucolyxir....don't want y'all to think that happened as a result of.... had asked the doc 2 weeks before...thought it was beginning to be time<img src="i/expressions/face-icon-small-smile.gif" border="0">
I will keep y'all posted...
<b>and Becki----</b>
great news....good luck with pfts!!!!
mandy
dramamama:
Thanks for the update!! Have you been pushing yourself lately, is that why you got run down?
I see you as a very active, interested human being that does not like limits.
Is that true?
We all deserve to slow down and take some extra steps to take care of ourselves. Having this illness takes a lot of practice to balance things just right.
When I get sick I can usually associate the tipping point with some activity or lack of enough rest or not taking my meds consistently enough or just pushing myself way too hard.
You have a good attitude and you are well armed with information that can help you deal with things in a constructive way!
I am sure you will be over this rough spot fairly soon!! Just don't push yourself too hard.
Best wishes and thanks again!!!
PeterC 58/cf
Thanks for the update!! Have you been pushing yourself lately, is that why you got run down?
I see you as a very active, interested human being that does not like limits.
Is that true?
We all deserve to slow down and take some extra steps to take care of ourselves. Having this illness takes a lot of practice to balance things just right.
When I get sick I can usually associate the tipping point with some activity or lack of enough rest or not taking my meds consistently enough or just pushing myself way too hard.
You have a good attitude and you are well armed with information that can help you deal with things in a constructive way!
I am sure you will be over this rough spot fairly soon!! Just don't push yourself too hard.
Best wishes and thanks again!!!
PeterC 58/cf
dramamama:
Thanks for the update!! Have you been pushing yourself lately, is that why you got run down?
I see you as a very active, interested human being that does not like limits.
Is that true?
We all deserve to slow down and take some extra steps to take care of ourselves. Having this illness takes a lot of practice to balance things just right.
When I get sick I can usually associate the tipping point with some activity or lack of enough rest or not taking my meds consistently enough or just pushing myself way too hard.
You have a good attitude and you are well armed with information that can help you deal with things in a constructive way!
I am sure you will be over this rough spot fairly soon!! Just don't push yourself too hard.
Best wishes and thanks again!!!
PeterC 58/cf
Thanks for the update!! Have you been pushing yourself lately, is that why you got run down?
I see you as a very active, interested human being that does not like limits.
Is that true?
We all deserve to slow down and take some extra steps to take care of ourselves. Having this illness takes a lot of practice to balance things just right.
When I get sick I can usually associate the tipping point with some activity or lack of enough rest or not taking my meds consistently enough or just pushing myself way too hard.
You have a good attitude and you are well armed with information that can help you deal with things in a constructive way!
I am sure you will be over this rough spot fairly soon!! Just don't push yourself too hard.
Best wishes and thanks again!!!
PeterC 58/cf
dramamama:
Thanks for the update!! Have you been pushing yourself lately, is that why you got run down?
I see you as a very active, interested human being that does not like limits.
Is that true?
We all deserve to slow down and take some extra steps to take care of ourselves. Having this illness takes a lot of practice to balance things just right.
When I get sick I can usually associate the tipping point with some activity or lack of enough rest or not taking my meds consistently enough or just pushing myself way too hard.
You have a good attitude and you are well armed with information that can help you deal with things in a constructive way!
I am sure you will be over this rough spot fairly soon!! Just don't push yourself too hard.
Best wishes and thanks again!!!
PeterC 58/cf
Thanks for the update!! Have you been pushing yourself lately, is that why you got run down?
I see you as a very active, interested human being that does not like limits.
Is that true?
We all deserve to slow down and take some extra steps to take care of ourselves. Having this illness takes a lot of practice to balance things just right.
When I get sick I can usually associate the tipping point with some activity or lack of enough rest or not taking my meds consistently enough or just pushing myself way too hard.
You have a good attitude and you are well armed with information that can help you deal with things in a constructive way!
I am sure you will be over this rough spot fairly soon!! Just don't push yourself too hard.
Best wishes and thanks again!!!
PeterC 58/cf