Is it CF?

smilesr1

New member
Hi all! I'm new here, and am looking for answers.
I'm a 29 yo mother to 6 children (none with CF) no complications and was able to get pregnant without problems. All are healthy and had normal deliveries.
I've always had allergy problems as a child (hives), and sinus problems since middle school. I was on the cross country team and was active in high school with no problems with asthma. In 2005 I started to have breathing problems. I was diagnoised with asthma when I was 25, in 2005. Since 2005, I have been diagnoised with pneumonia about 3-6 times a year. That's not including other respitory infections. I have always been on the skinny side (chalked it up to genes, b/c my sisters and I are all on the small side). Can usually eat whatever and still stay well under 105 pounds.
I have no digestive issues (aside from the occational heart burn during the second/third trimester of pregnancy)
In May I called a pulmonologist because I was tired of being sick and no one knew what was wrong or would want to do anything to figure out why I would get so sick all the time. He did a battery of tests, blood work and we were able to rule out cancers and TB, Hepatitis, etc. I had a bronchosopy done in June and my results were 99% conclusive that it was COP/BOOP but he would need larger samples of my lungs to confirm. I have sinced moved (DH is in the Navy and we moved from VA to WA in early July). My new doctor doesn't think it's COP/BOOP at all. And now wants to test for CF and a couple of allergy things. I've done a few other blood tests too, all come back normal. She refuses to do another lung biopsy saying it's unnecessary.
Anyway, I was wondering if anyone has gone through something similar. I've had about 5 or 6 CT scans in the past 2 years. I don't even know how many X-rays in the past 4. Dh wants me to get a third opinion from a larger practice (We live near Seattle). My new doctor still won't tell me what she thinks I have. It changes every time I see her. She thought it might be SARS, or someting else. Then she put on my referal for my CT scan last week, that I was being checked for intestinal flu pneumonia (what is that?). She has only told me that she didn't think I had COP/BOOP.
I'm currently taking (with very little relief), Singlular, Zyrtec D, Asthmenax, Flonase, nebulizer (albuteral), OTC Sudafed for sinus/allergies, prednisone, some antibiootic to prevent PCP,and my inhaler. other meds- BCP, OTC multi vitamins, calcuium pills (to conteract the prednisone bone loss).
Before 2005, I could breath pretty well, without problems and I didn't need all these meds. Since being diagnoised, my health has taken a downward spiral! It's almost as if all this crap is making me sicker. I just want to be healthy again.
I do try to work out every day with pilates. Any one with a similar story? Or other information? Would love to hear your opionions. Thanks!
 

smilesr1

New member
Hi all! I'm new here, and am looking for answers.
I'm a 29 yo mother to 6 children (none with CF) no complications and was able to get pregnant without problems. All are healthy and had normal deliveries.
I've always had allergy problems as a child (hives), and sinus problems since middle school. I was on the cross country team and was active in high school with no problems with asthma. In 2005 I started to have breathing problems. I was diagnoised with asthma when I was 25, in 2005. Since 2005, I have been diagnoised with pneumonia about 3-6 times a year. That's not including other respitory infections. I have always been on the skinny side (chalked it up to genes, b/c my sisters and I are all on the small side). Can usually eat whatever and still stay well under 105 pounds.
I have no digestive issues (aside from the occational heart burn during the second/third trimester of pregnancy)
In May I called a pulmonologist because I was tired of being sick and no one knew what was wrong or would want to do anything to figure out why I would get so sick all the time. He did a battery of tests, blood work and we were able to rule out cancers and TB, Hepatitis, etc. I had a bronchosopy done in June and my results were 99% conclusive that it was COP/BOOP but he would need larger samples of my lungs to confirm. I have sinced moved (DH is in the Navy and we moved from VA to WA in early July). My new doctor doesn't think it's COP/BOOP at all. And now wants to test for CF and a couple of allergy things. I've done a few other blood tests too, all come back normal. She refuses to do another lung biopsy saying it's unnecessary.
Anyway, I was wondering if anyone has gone through something similar. I've had about 5 or 6 CT scans in the past 2 years. I don't even know how many X-rays in the past 4. Dh wants me to get a third opinion from a larger practice (We live near Seattle). My new doctor still won't tell me what she thinks I have. It changes every time I see her. She thought it might be SARS, or someting else. Then she put on my referal for my CT scan last week, that I was being checked for intestinal flu pneumonia (what is that?). She has only told me that she didn't think I had COP/BOOP.
I'm currently taking (with very little relief), Singlular, Zyrtec D, Asthmenax, Flonase, nebulizer (albuteral), OTC Sudafed for sinus/allergies, prednisone, some antibiootic to prevent PCP,and my inhaler. other meds- BCP, OTC multi vitamins, calcuium pills (to conteract the prednisone bone loss).
Before 2005, I could breath pretty well, without problems and I didn't need all these meds. Since being diagnoised, my health has taken a downward spiral! It's almost as if all this crap is making me sicker. I just want to be healthy again.
I do try to work out every day with pilates. Any one with a similar story? Or other information? Would love to hear your opionions. Thanks!
 

smilesr1

New member
Hi all! I'm new here, and am looking for answers.
I'm a 29 yo mother to 6 children (none with CF) no complications and was able to get pregnant without problems. All are healthy and had normal deliveries.
I've always had allergy problems as a child (hives), and sinus problems since middle school. I was on the cross country team and was active in high school with no problems with asthma. In 2005 I started to have breathing problems. I was diagnoised with asthma when I was 25, in 2005. Since 2005, I have been diagnoised with pneumonia about 3-6 times a year. That's not including other respitory infections. I have always been on the skinny side (chalked it up to genes, b/c my sisters and I are all on the small side). Can usually eat whatever and still stay well under 105 pounds.
I have no digestive issues (aside from the occational heart burn during the second/third trimester of pregnancy)
In May I called a pulmonologist because I was tired of being sick and no one knew what was wrong or would want to do anything to figure out why I would get so sick all the time. He did a battery of tests, blood work and we were able to rule out cancers and TB, Hepatitis, etc. I had a bronchosopy done in June and my results were 99% conclusive that it was COP/BOOP but he would need larger samples of my lungs to confirm. I have sinced moved (DH is in the Navy and we moved from VA to WA in early July). My new doctor doesn't think it's COP/BOOP at all. And now wants to test for CF and a couple of allergy things. I've done a few other blood tests too, all come back normal. She refuses to do another lung biopsy saying it's unnecessary.
Anyway, I was wondering if anyone has gone through something similar. I've had about 5 or 6 CT scans in the past 2 years. I don't even know how many X-rays in the past 4. Dh wants me to get a third opinion from a larger practice (We live near Seattle). My new doctor still won't tell me what she thinks I have. It changes every time I see her. She thought it might be SARS, or someting else. Then she put on my referal for my CT scan last week, that I was being checked for intestinal flu pneumonia (what is that?). She has only told me that she didn't think I had COP/BOOP.
I'm currently taking (with very little relief), Singlular, Zyrtec D, Asthmenax, Flonase, nebulizer (albuteral), OTC Sudafed for sinus/allergies, prednisone, some antibiootic to prevent PCP,and my inhaler. other meds- BCP, OTC multi vitamins, calcuium pills (to conteract the prednisone bone loss).
Before 2005, I could breath pretty well, without problems and I didn't need all these meds. Since being diagnoised, my health has taken a downward spiral! It's almost as if all this crap is making me sicker. I just want to be healthy again.
I do try to work out every day with pilates. Any one with a similar story? Or other information? Would love to hear your opionions. Thanks!
 

smilesr1

New member
Hi all! I'm new here, and am looking for answers.
I'm a 29 yo mother to 6 children (none with CF) no complications and was able to get pregnant without problems. All are healthy and had normal deliveries.
I've always had allergy problems as a child (hives), and sinus problems since middle school. I was on the cross country team and was active in high school with no problems with asthma. In 2005 I started to have breathing problems. I was diagnoised with asthma when I was 25, in 2005. Since 2005, I have been diagnoised with pneumonia about 3-6 times a year. That's not including other respitory infections. I have always been on the skinny side (chalked it up to genes, b/c my sisters and I are all on the small side). Can usually eat whatever and still stay well under 105 pounds.
I have no digestive issues (aside from the occational heart burn during the second/third trimester of pregnancy)
In May I called a pulmonologist because I was tired of being sick and no one knew what was wrong or would want to do anything to figure out why I would get so sick all the time. He did a battery of tests, blood work and we were able to rule out cancers and TB, Hepatitis, etc. I had a bronchosopy done in June and my results were 99% conclusive that it was COP/BOOP but he would need larger samples of my lungs to confirm. I have sinced moved (DH is in the Navy and we moved from VA to WA in early July). My new doctor doesn't think it's COP/BOOP at all. And now wants to test for CF and a couple of allergy things. I've done a few other blood tests too, all come back normal. She refuses to do another lung biopsy saying it's unnecessary.
Anyway, I was wondering if anyone has gone through something similar. I've had about 5 or 6 CT scans in the past 2 years. I don't even know how many X-rays in the past 4. Dh wants me to get a third opinion from a larger practice (We live near Seattle). My new doctor still won't tell me what she thinks I have. It changes every time I see her. She thought it might be SARS, or someting else. Then she put on my referal for my CT scan last week, that I was being checked for intestinal flu pneumonia (what is that?). She has only told me that she didn't think I had COP/BOOP.
I'm currently taking (with very little relief), Singlular, Zyrtec D, Asthmenax, Flonase, nebulizer (albuteral), OTC Sudafed for sinus/allergies, prednisone, some antibiootic to prevent PCP,and my inhaler. other meds- BCP, OTC multi vitamins, calcuium pills (to conteract the prednisone bone loss).
Before 2005, I could breath pretty well, without problems and I didn't need all these meds. Since being diagnoised, my health has taken a downward spiral! It's almost as if all this crap is making me sicker. I just want to be healthy again.
I do try to work out every day with pilates. Any one with a similar story? Or other information? Would love to hear your opionions. Thanks!
 

smilesr1

New member
Hi all! I'm new here, and am looking for answers.
<br />I'm a 29 yo mother to 6 children (none with CF) no complications and was able to get pregnant without problems. All are healthy and had normal deliveries.
<br />I've always had allergy problems as a child (hives), and sinus problems since middle school. I was on the cross country team and was active in high school with no problems with asthma. In 2005 I started to have breathing problems. I was diagnoised with asthma when I was 25, in 2005. Since 2005, I have been diagnoised with pneumonia about 3-6 times a year. That's not including other respitory infections. I have always been on the skinny side (chalked it up to genes, b/c my sisters and I are all on the small side). Can usually eat whatever and still stay well under 105 pounds.
<br />I have no digestive issues (aside from the occational heart burn during the second/third trimester of pregnancy)
<br />In May I called a pulmonologist because I was tired of being sick and no one knew what was wrong or would want to do anything to figure out why I would get so sick all the time. He did a battery of tests, blood work and we were able to rule out cancers and TB, Hepatitis, etc. I had a bronchosopy done in June and my results were 99% conclusive that it was COP/BOOP but he would need larger samples of my lungs to confirm. I have sinced moved (DH is in the Navy and we moved from VA to WA in early July). My new doctor doesn't think it's COP/BOOP at all. And now wants to test for CF and a couple of allergy things. I've done a few other blood tests too, all come back normal. She refuses to do another lung biopsy saying it's unnecessary.
<br />Anyway, I was wondering if anyone has gone through something similar. I've had about 5 or 6 CT scans in the past 2 years. I don't even know how many X-rays in the past 4. Dh wants me to get a third opinion from a larger practice (We live near Seattle). My new doctor still won't tell me what she thinks I have. It changes every time I see her. She thought it might be SARS, or someting else. Then she put on my referal for my CT scan last week, that I was being checked for intestinal flu pneumonia (what is that?). She has only told me that she didn't think I had COP/BOOP.
<br />I'm currently taking (with very little relief), Singlular, Zyrtec D, Asthmenax, Flonase, nebulizer (albuteral), OTC Sudafed for sinus/allergies, prednisone, some antibiootic to prevent PCP,and my inhaler. other meds- BCP, OTC multi vitamins, calcuium pills (to conteract the prednisone bone loss).
<br />Before 2005, I could breath pretty well, without problems and I didn't need all these meds. Since being diagnoised, my health has taken a downward spiral! It's almost as if all this crap is making me sicker. I just want to be healthy again.
<br />I do try to work out every day with pilates. Any one with a similar story? Or other information? Would love to hear your opionions. Thanks!
<br />
<br />
 

Melissa75

Administrator
I am sorry to hear of all your problems. I would go for any testing they offer you and do not be content with sweat testing alone for a CF neg diagnosis. Ultimately you need a full gene sequencing (see Ambry genetics) and you have to have enough of the right issues to have insurance pay for that.

What else do your CT scans show? When I am healthy, mine show bronchiectasis, which is the damage that happens from infections to people with and without CF. It is linked to immune deficiencies and cilia movement deficiencies too. Also, rheumatoid arthritis.
I once happened to have a CT scan when I was sick...aka having a "routine" exacerbation and the radiologist wrote bronchiectasis all over and/or BOOP. Because antibiotics made me better, pulmo decided infection rather than BOOP (which is "fixed" by steriods, not abs). Nonetheless, I continued to relapse and culture nothing but routine bacteria. Maybe hypersensitivity pneumonitis to a bacteria rather than the typical farm or bird stuff? Who knows!

Bottom line is that with bronchiectasis I have to do parts of the CF regimen to stay "well." Hence my reason for being here :)

Do you have mucus problems? Then you need to be doing physical therapy to get it out.

BTW, my timing was coughing since birth, occasional pneumonias; at 29 yrs, between kid 2 & 3 I started with the chronic sick.
_________
Melissa, 34, bronchiectasis (no CF)
 

Melissa75

Administrator
I am sorry to hear of all your problems. I would go for any testing they offer you and do not be content with sweat testing alone for a CF neg diagnosis. Ultimately you need a full gene sequencing (see Ambry genetics) and you have to have enough of the right issues to have insurance pay for that.

What else do your CT scans show? When I am healthy, mine show bronchiectasis, which is the damage that happens from infections to people with and without CF. It is linked to immune deficiencies and cilia movement deficiencies too. Also, rheumatoid arthritis.
I once happened to have a CT scan when I was sick...aka having a "routine" exacerbation and the radiologist wrote bronchiectasis all over and/or BOOP. Because antibiotics made me better, pulmo decided infection rather than BOOP (which is "fixed" by steriods, not abs). Nonetheless, I continued to relapse and culture nothing but routine bacteria. Maybe hypersensitivity pneumonitis to a bacteria rather than the typical farm or bird stuff? Who knows!

Bottom line is that with bronchiectasis I have to do parts of the CF regimen to stay "well." Hence my reason for being here :)

Do you have mucus problems? Then you need to be doing physical therapy to get it out.

BTW, my timing was coughing since birth, occasional pneumonias; at 29 yrs, between kid 2 & 3 I started with the chronic sick.
_________
Melissa, 34, bronchiectasis (no CF)
 

Melissa75

Administrator
I am sorry to hear of all your problems. I would go for any testing they offer you and do not be content with sweat testing alone for a CF neg diagnosis. Ultimately you need a full gene sequencing (see Ambry genetics) and you have to have enough of the right issues to have insurance pay for that.

What else do your CT scans show? When I am healthy, mine show bronchiectasis, which is the damage that happens from infections to people with and without CF. It is linked to immune deficiencies and cilia movement deficiencies too. Also, rheumatoid arthritis.
I once happened to have a CT scan when I was sick...aka having a "routine" exacerbation and the radiologist wrote bronchiectasis all over and/or BOOP. Because antibiotics made me better, pulmo decided infection rather than BOOP (which is "fixed" by steriods, not abs). Nonetheless, I continued to relapse and culture nothing but routine bacteria. Maybe hypersensitivity pneumonitis to a bacteria rather than the typical farm or bird stuff? Who knows!

Bottom line is that with bronchiectasis I have to do parts of the CF regimen to stay "well." Hence my reason for being here :)

Do you have mucus problems? Then you need to be doing physical therapy to get it out.

BTW, my timing was coughing since birth, occasional pneumonias; at 29 yrs, between kid 2 & 3 I started with the chronic sick.
_________
Melissa, 34, bronchiectasis (no CF)
 

Melissa75

Administrator
I am sorry to hear of all your problems. I would go for any testing they offer you and do not be content with sweat testing alone for a CF neg diagnosis. Ultimately you need a full gene sequencing (see Ambry genetics) and you have to have enough of the right issues to have insurance pay for that.

What else do your CT scans show? When I am healthy, mine show bronchiectasis, which is the damage that happens from infections to people with and without CF. It is linked to immune deficiencies and cilia movement deficiencies too. Also, rheumatoid arthritis.
I once happened to have a CT scan when I was sick...aka having a "routine" exacerbation and the radiologist wrote bronchiectasis all over and/or BOOP. Because antibiotics made me better, pulmo decided infection rather than BOOP (which is "fixed" by steriods, not abs). Nonetheless, I continued to relapse and culture nothing but routine bacteria. Maybe hypersensitivity pneumonitis to a bacteria rather than the typical farm or bird stuff? Who knows!

Bottom line is that with bronchiectasis I have to do parts of the CF regimen to stay "well." Hence my reason for being here :)

Do you have mucus problems? Then you need to be doing physical therapy to get it out.

BTW, my timing was coughing since birth, occasional pneumonias; at 29 yrs, between kid 2 & 3 I started with the chronic sick.
_________
Melissa, 34, bronchiectasis (no CF)
 

Melissa75

Administrator
I am sorry to hear of all your problems. I would go for any testing they offer you and do not be content with sweat testing alone for a CF neg diagnosis. Ultimately you need a full gene sequencing (see Ambry genetics) and you have to have enough of the right issues to have insurance pay for that.
<br />
<br />What else do your CT scans show? When I am healthy, mine show bronchiectasis, which is the damage that happens from infections to people with and without CF. It is linked to immune deficiencies and cilia movement deficiencies too. Also, rheumatoid arthritis.
<br />I once happened to have a CT scan when I was sick...aka having a "routine" exacerbation and the radiologist wrote bronchiectasis all over and/or BOOP. Because antibiotics made me better, pulmo decided infection rather than BOOP (which is "fixed" by steriods, not abs). Nonetheless, I continued to relapse and culture nothing but routine bacteria. Maybe hypersensitivity pneumonitis to a bacteria rather than the typical farm or bird stuff? Who knows!
<br />
<br />Bottom line is that with bronchiectasis I have to do parts of the CF regimen to stay "well." Hence my reason for being here :)
<br />
<br />Do you have mucus problems? Then you need to be doing physical therapy to get it out.
<br />
<br />BTW, my timing was coughing since birth, occasional pneumonias; at 29 yrs, between kid 2 & 3 I started with the chronic sick.
<br />_________
<br />Melissa, 34, bronchiectasis (no CF)
 
M

MiddleAgedLady

Guest
I too am sorry for your ordeal. I went misdiagnosed until I was 26 even though I had positive sweat test at 17. They decided I wasn't "sick enough" to have CF so ruled it out. Then they thought maybe I had TB since I always have a positive skin test. Turns out I have a positive skin test for everything! Highly allergic, chronic sinus infections, four sinus surgeries, etc. Get the gene sequencing if you can. I would be really careful with the bronchoscopies and invasive tests until they have tried everything else. The not knowing what's wrong is maddening.
 
M

MiddleAgedLady

Guest
I too am sorry for your ordeal. I went misdiagnosed until I was 26 even though I had positive sweat test at 17. They decided I wasn't "sick enough" to have CF so ruled it out. Then they thought maybe I had TB since I always have a positive skin test. Turns out I have a positive skin test for everything! Highly allergic, chronic sinus infections, four sinus surgeries, etc. Get the gene sequencing if you can. I would be really careful with the bronchoscopies and invasive tests until they have tried everything else. The not knowing what's wrong is maddening.
 
M

MiddleAgedLady

Guest
I too am sorry for your ordeal. I went misdiagnosed until I was 26 even though I had positive sweat test at 17. They decided I wasn't "sick enough" to have CF so ruled it out. Then they thought maybe I had TB since I always have a positive skin test. Turns out I have a positive skin test for everything! Highly allergic, chronic sinus infections, four sinus surgeries, etc. Get the gene sequencing if you can. I would be really careful with the bronchoscopies and invasive tests until they have tried everything else. The not knowing what's wrong is maddening.
 
M

MiddleAgedLady

Guest
I too am sorry for your ordeal. I went misdiagnosed until I was 26 even though I had positive sweat test at 17. They decided I wasn't "sick enough" to have CF so ruled it out. Then they thought maybe I had TB since I always have a positive skin test. Turns out I have a positive skin test for everything! Highly allergic, chronic sinus infections, four sinus surgeries, etc. Get the gene sequencing if you can. I would be really careful with the bronchoscopies and invasive tests until they have tried everything else. The not knowing what's wrong is maddening.
 
M

MiddleAgedLady

Guest
I too am sorry for your ordeal. I went misdiagnosed until I was 26 even though I had positive sweat test at 17. They decided I wasn't "sick enough" to have CF so ruled it out. Then they thought maybe I had TB since I always have a positive skin test. Turns out I have a positive skin test for everything! Highly allergic, chronic sinus infections, four sinus surgeries, etc. Get the gene sequencing if you can. I would be really careful with the bronchoscopies and invasive tests until they have tried everything else. The not knowing what's wrong is maddening.
 

vincentd77

New member
i have been living with CF all my life, and b4 i would take any doctors word for it, i would go to a CF specialist and get their opion on it cus they kno what they r lookin for in a person that might be living with CF
 

vincentd77

New member
i have been living with CF all my life, and b4 i would take any doctors word for it, i would go to a CF specialist and get their opion on it cus they kno what they r lookin for in a person that might be living with CF
 

vincentd77

New member
i have been living with CF all my life, and b4 i would take any doctors word for it, i would go to a CF specialist and get their opion on it cus they kno what they r lookin for in a person that might be living with CF
 

vincentd77

New member
i have been living with CF all my life, and b4 i would take any doctors word for it, i would go to a CF specialist and get their opion on it cus they kno what they r lookin for in a person that might be living with CF
 

vincentd77

New member
i have been living with CF all my life, and b4 i would take any doctors word for it, i would go to a CF specialist and get their opion on it cus they kno what they r lookin for in a person that might be living with CF
 
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