Hi everyone -- I'd like to get your advice about possible diagnoses. I'm 34 years old, and my symptoms are a chronic productive cough and fatigue. This has been going on for years, and my cough is getting pretty bad. A CT scan found bronchiectasis, and I also have low vit. D levels. I'm taking a high dose of inhaled steroids to control my asthma, but this doesn't help so much with the chronic cough. I've done a bunch of sputum cultures, and they've found things like pseudomonas or hemophilus influenzae on various occasions. But my doctor hasn't been able to come up with a good diagnosis. I figured CF (one of the milder variants) might be a possibility, but the sweat test came back negative. (I got 6 on each arm).Anyone have any ideas what could be wrong? Is it possible to have some form of CF even with such a negative result on the sweat test, or could it be something else?Thanks,Kevin
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help with diagnosis
- Thread starter kevinc
- Start date
Hi everyone -- I'd like to get your advice about possible diagnoses. I'm 34 years old, and my symptoms are a chronic productive cough and fatigue. This has been going on for years, and my cough is getting pretty bad. A CT scan found bronchiectasis, and I also have low vit. D levels. I'm taking a high dose of inhaled steroids to control my asthma, but this doesn't help so much with the chronic cough. I've done a bunch of sputum cultures, and they've found things like pseudomonas or hemophilus influenzae on various occasions. But my doctor hasn't been able to come up with a good diagnosis. I figured CF (one of the milder variants) might be a possibility, but the sweat test came back negative. (I got 6 on each arm).Anyone have any ideas what could be wrong? Is it possible to have some form of CF even with such a negative result on the sweat test, or could it be something else?Thanks,Kevin
Yes. I do believe that you can have CF and still pass a sweat test even though the results are usually higher than 6. It really sounds like you have alot of the symptoms and should be doing treatments like a CF person would to control the bacteria and bronchiectasis in your lungs. If you really want to know if you have the disease then get a full genetic screening done but in the meantime you could ask your doctor if you could start trying some different CF treatments to see if anything helps you.
Yes. I do believe that you can have CF and still pass a sweat test even though the results are usually higher than 6. It really sounds like you have alot of the symptoms and should be doing treatments like a CF person would to control the bacteria and bronchiectasis in your lungs. If you really want to know if you have the disease then get a full genetic screening done but in the meantime you could ask your doctor if you could start trying some different CF treatments to see if anything helps you.
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pencf
Guest
At a CF conference I went to last year, there was a lot of talk about potential CF patients who either have 2, what they call nonsense genes ( thought to be CF 'like' genes but diagnostic testing hasn't be able to find a genetic mapping for them). I agree with the others. Go to a CF Approved clinic, and get both genetic test and nasal differential test (apparently they have a very high accuracy rate). Plus, how often does a regard person culture those bugs in their airway (was it a coughed up sputum?) Certainly many folks with sinus issues, chronic infections will culture those bugs (almost anything that will culture in a CF airway) but I have never heard them getting them in their lungs. Good Luck. If you do have CF, I am quiet sure, once treated properly, you will feel and look better, and have a life of better living~!!!!! God Bless!
P
pencf
Guest
At a CF conference I went to last year, there was a lot of talk about potential CF patients who either have 2, what they call nonsense genes ( thought to be CF 'like' genes but diagnostic testing hasn't be able to find a genetic mapping for them). I agree with the others. Go to a CF Approved clinic, and get both genetic test and nasal differential test (apparently they have a very high accuracy rate). Plus, how often does a regard person culture those bugs in their airway (was it a coughed up sputum?) Certainly many folks with sinus issues, chronic infections will culture those bugs (almost anything that will culture in a CF airway) but I have never heard them getting them in their lungs. Good Luck. If you do have CF, I am quiet sure, once treated properly, you will feel and look better, and have a life of better living~!!!!! God Bless!
S
stephen
Guest
I would run from that doctor and get genetic tested! I too had a chronic productive cough all my life and finally developed bronchiectasis. I also ran frequent low grade fevers and was often fatigued. For years the results of my sweat tests werenegative. (That was before genetic testing is what it is today.) After seeing many "Best Doctors" at several prominent NY hospitals over the years, I finally went to National Jewish in Denver in 2005. I was 63 at the time. Their genetic testing resulted in a diagnosis of CF. They found one "common" mutation - G542X, and one uncommon - D1152H. For me, and others, a CF diagnosis later in life can beextremely positive. It opens a whole new treatment regimen. It was a real life changer for me. Today at the age of 70, I feel better than I felt 10 or 20 years ago, thank G-d.Today, withthe advances made in understanding CF and in genetic testing, any doctor treating someone like you should recommend genetic testing! Wishing you and all the best. Stephen, 70 y/o, FEV1 of 48%
S
stephen
Guest
I would run from that doctor and get genetic tested! I too had a chronic productive cough all my life and finally developed bronchiectasis. I also ran frequent low grade fevers and was often fatigued. For years the results of my sweat tests werenegative. (That was before genetic testing is what it is today.) After seeing many "Best Doctors" at several prominent NY hospitals over the years, I finally went to National Jewish in Denver in 2005. I was 63 at the time. Their genetic testing resulted in a diagnosis of CF. They found one "common" mutation - G542X, and one uncommon - D1152H. For me, and others, a CF diagnosis later in life can beextremely positive. It opens a whole new treatment regimen. It was a real life changer for me. Today at the age of 70, I feel better than I felt 10 or 20 years ago, thank G-d.Today, withthe advances made in understanding CF and in genetic testing, any doctor treating someone like you should recommend genetic testing! Wishing you and all the best. Stephen, 70 y/o, FEV1 of 48%
Thanks everyone for your help. I should have mentioned, I did get a basic genetic test done (99 of the most common variants) which came back negative. This, together with the negative sweat test, made me wonder if it's something else. But, it's probably still worth getting the more extensive genetic test, and meanwhile engaging in CF treatments.Can anyone recommend a CF clinic in Chicago? Thanks,Kevin
Thanks everyone for your help. I should have mentioned, I did get a basic genetic test done (99 of the most common variants) which came back negative. This, together with the negative sweat test, made me wonder if it's something else. But, it's probably still worth getting the more extensive genetic test, and meanwhile engaging in CF treatments.Can anyone recommend a CF clinic in Chicago? Thanks,Kevin
bluevelvet73
New member
Kevin, I am also from Chicago(suburbs) and was not diagnosed until I was 54...3 yrs ago. They found Bronchiectasis with a CT scan and one marker of CF DF508. Due to my lack of insurance, my Pulmonologist did not do a full sequencing but suspects I have more. (the sweat test was normal). Northwestern Memorial Hospital has an excellent reputation. My specialist is out of Lutheran General. One of the Drs in that group is the head of their CF dept. Good Luck!
Barb
P.S. There is another helpful forum called bronchiectasis r us
Barb
P.S. There is another helpful forum called bronchiectasis r us
bluevelvet73
New member
Kevin, I am also from Chicago(suburbs) and was not diagnosed until I was 54...3 yrs ago. They found Bronchiectasis with a CT scan and one marker of CF DF508. Due to my lack of insurance, my Pulmonologist did not do a full sequencing but suspects I have more. (the sweat test was normal). Northwestern Memorial Hospital has an excellent reputation. My specialist is out of Lutheran General. One of the Drs in that group is the head of their CF dept. Good Luck!
Barb
P.S. There is another helpful forum called bronchiectasis r us
Barb
P.S. There is another helpful forum called bronchiectasis r us