hello, i am new to this forum. i am a 28 year old female, who has had a chronic cough for over a year. i have had numerous CT scans, and chest Xrays. i had chronic sinusitis and had surgery in april. i had the surgery b/c a few doctors believed that the blockage was causing my infection.i haven't been on any medicine since a year ago while my doctor tries to diagnose. just this past friday, my doctor looked at my CT scan (for the tenth time i swear) and mentions that there is an abnormal bronchial tube and then says he wants to test me for CF(which i had never heard of diagnosis in adults). he said i have micro baceteria avium? and some form of staph but can't make a proper diagnosis since they messed up my lab results and i have to resubmit samples. i am very scared b/c i don't understand why this wasn't mentioned to me the entire year i was trying to diagnosis this with him. and he dropped this in the conversation offering no support.... i am otherwise very healthy other than the cough and sinus thing (which is gone) i have sometimes stomach issues but they aren't severe at all. i just want to know if you all think he could be giving me worst case scenario? or if just b/c i had no symptoms my whole life doesn't necessarily out rule it. i took my blood test today but they said it could take up to 2 months. i don't want to unnecessarily worry my family so i am turning to this site for advice....thanks in advance!
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- Thread starter oatmeal28
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hello, i am new to this forum. i am a 28 year old female, who has had a chronic cough for over a year. i have had numerous CT scans, and chest Xrays. i had chronic sinusitis and had surgery in april. i had the surgery b/c a few doctors believed that the blockage was causing my infection.i haven't been on any medicine since a year ago while my doctor tries to diagnose. just this past friday, my doctor looked at my CT scan (for the tenth time i swear) and mentions that there is an abnormal bronchial tube and then says he wants to test me for CF(which i had never heard of diagnosis in adults). he said i have micro baceteria avium? and some form of staph but can't make a proper diagnosis since they messed up my lab results and i have to resubmit samples. i am very scared b/c i don't understand why this wasn't mentioned to me the entire year i was trying to diagnosis this with him. and he dropped this in the conversation offering no support.... i am otherwise very healthy other than the cough and sinus thing (which is gone) i have sometimes stomach issues but they aren't severe at all. i just want to know if you all think he could be giving me worst case scenario? or if just b/c i had no symptoms my whole life doesn't necessarily out rule it. i took my blood test today but they said it could take up to 2 months. i don't want to unnecessarily worry my family so i am turning to this site for advice....thanks in advance!
hello, i am new to this forum. i am a 28 year old female, who has had a chronic cough for over a year. i have had numerous CT scans, and chest Xrays. i had chronic sinusitis and had surgery in april. i had the surgery b/c a few doctors believed that the blockage was causing my infection.i haven't been on any medicine since a year ago while my doctor tries to diagnose. just this past friday, my doctor looked at my CT scan (for the tenth time i swear) and mentions that there is an abnormal bronchial tube and then says he wants to test me for CF(which i had never heard of diagnosis in adults). he said i have micro baceteria avium? and some form of staph but can't make a proper diagnosis since they messed up my lab results and i have to resubmit samples. i am very scared b/c i don't understand why this wasn't mentioned to me the entire year i was trying to diagnosis this with him. and he dropped this in the conversation offering no support.... i am otherwise very healthy other than the cough and sinus thing (which is gone) i have sometimes stomach issues but they aren't severe at all. i just want to know if you all think he could be giving me worst case scenario? or if just b/c i had no symptoms my whole life doesn't necessarily out rule it. i took my blood test today but they said it could take up to 2 months. i don't want to unnecessarily worry my family so i am turning to this site for advice....thanks in advance!
hello, i am new to this forum. i am a 28 year old female, who has had a chronic cough for over a year. i have had numerous CT scans, and chest Xrays. i had chronic sinusitis and had surgery in april. i had the surgery b/c a few doctors believed that the blockage was causing my infection.i haven't been on any medicine since a year ago while my doctor tries to diagnose. just this past friday, my doctor looked at my CT scan (for the tenth time i swear) and mentions that there is an abnormal bronchial tube and then says he wants to test me for CF(which i had never heard of diagnosis in adults). he said i have micro baceteria avium? and some form of staph but can't make a proper diagnosis since they messed up my lab results and i have to resubmit samples. i am very scared b/c i don't understand why this wasn't mentioned to me the entire year i was trying to diagnosis this with him. and he dropped this in the conversation offering no support.... i am otherwise very healthy other than the cough and sinus thing (which is gone) i have sometimes stomach issues but they aren't severe at all. i just want to know if you all think he could be giving me worst case scenario? or if just b/c i had no symptoms my whole life doesn't necessarily out rule it. i took my blood test today but they said it could take up to 2 months. i don't want to unnecessarily worry my family so i am turning to this site for advice....thanks in advance!
hello, i am new to this forum. i am a 28 year old female, who has had a chronic cough for over a year. i have had numerous CT scans, and chest Xrays. i had chronic sinusitis and had surgery in april. i had the surgery b/c a few doctors believed that the blockage was causing my infection.i haven't been on any medicine since a year ago while my doctor tries to diagnose. just this past friday, my doctor looked at my CT scan (for the tenth time i swear) and mentions that there is an abnormal bronchial tube and then says he wants to test me for CF(which i had never heard of diagnosis in adults). he said i have micro baceteria avium? and some form of staph but can't make a proper diagnosis since they messed up my lab results and i have to resubmit samples. i am very scared b/c i don't understand why this wasn't mentioned to me the entire year i was trying to diagnosis this with him. and he dropped this in the conversation offering no support.... i am otherwise very healthy other than the cough and sinus thing (which is gone) i have sometimes stomach issues but they aren't severe at all. i just want to know if you all think he could be giving me worst case scenario? or if just b/c i had no symptoms my whole life doesn't necessarily out rule it. i took my blood test today but they said it could take up to 2 months. i don't want to unnecessarily worry my family so i am turning to this site for advice....thanks in advance!
jbrandonAW
New member
I would suggest asking for a sweat test. It sounds to me as well that you have a case of CF.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
jbrandonAW
New member
I would suggest asking for a sweat test. It sounds to me as well that you have a case of CF.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
jbrandonAW
New member
I would suggest asking for a sweat test. It sounds to me as well that you have a case of CF.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
jbrandonAW
New member
I would suggest asking for a sweat test. It sounds to me as well that you have a case of CF.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
jbrandonAW
New member
I would suggest asking for a sweat test. It sounds to me as well that you have a case of CF.
<br />
<br />***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
<br />
<br />***sorry I made myself laugh with the "case of CF" thing...I don't mean to make light of your situation, but having CF it jsut made me giggle.
Oatmeal28
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
Oatmeal28
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
Oatmeal28
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
Oatmeal28
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
_________
Melissa, 34, bronchiectasis (no CF)
Oatmeal28
<br />
<br />I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
<br />
<br />The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
<br />
<br />While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
<br />
<br />BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
<br />
<br />I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
<br />_________
<br />Melissa, 34, bronchiectasis (no CF)
<br />
<br />I am sorry that you are going through these health problems. Your story sounds similar to mine. I had a chronic cough for years, but I didn't get constant infections until my late twenties. I was dx with bronchiectasis (sounds like that is what your doctor is seeing in the CT scan). MAC or mycobacterium avium complex tends to hit the right middle lobe and lingula portions of the lung, which is where my damage is.
<br />
<br />The presence of bronchiectasis is good reason to test a patient--particularly a young one--for a lot of things: immune deficiencies, autoimmune diseases, CF, and cilia problems. The reality is that you will likely have to deal with your bronchiectasis for the rest of your life regardless of the cause. By "deal with" I mean chest physical therapy to drain the mucus and meds to open your airways and treat chronic inflammation in your airways. Plus, antibiotics to treat the infections.
<br />
<br />While very scary, a diagnosis of CF would give you knowledge and access to specialized care. Also, having been relatively healthy for so long would imply that you have a mild presentation of the disease. The tricky part of having been mostly healthy as a kid (for me) was that I went through a pretty long stage of denial and I struggled to adhere to a routine of self care.
<br />
<br />BTW, you need to be aware that a negative sweat test is in no way conclusive. Genetic testing is better, although you'll learn here that there are at least three levels of testing (20 something genes, 90 something genes and full gene sequencing). In my case, my sweat test was neg (both as an infant and in my late twenties). My 90-something panel was also negative. It turns out that I do have one of the genes for Alpha-1 antitrypsin deficiency. This means that I make a less than normal amount of a lung repairing enzyme. It has yet to be proven that alpha-1 antitrypsin deficiency leads to bronchiectasis. But for now I am not planning to have the full CF gene panel done. I figure it is unlikely that I am as healthy as I am and I have both CF and alpha-1 antitrypsin.
<br />
<br />I hope all this info helps. There is another message board that I visit called bronchiectasis r'us. You should check that one out too. A few people on that board learned they have CF. Others had bad childhood infections, TB, immune deficiencies, chemical exposures...an array of causes.
<br />_________
<br />Melissa, 34, bronchiectasis (no CF)
Oh, one more thing. Consider seeing a pulmonologist who specializes in MAC/TB. You can get advice from the people who run area support groups. Here is a link to the University of Texas, Tyler Microbiology Lab, which organizes this info. If the link doesn't work, google "MAC LUNG" and look under the "research" tab.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
Oh, one more thing. Consider seeing a pulmonologist who specializes in MAC/TB. You can get advice from the people who run area support groups. Here is a link to the University of Texas, Tyler Microbiology Lab, which organizes this info. If the link doesn't work, google "MAC LUNG" and look under the "research" tab.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
Oh, one more thing. Consider seeing a pulmonologist who specializes in MAC/TB. You can get advice from the people who run area support groups. Here is a link to the University of Texas, Tyler Microbiology Lab, which organizes this info. If the link doesn't work, google "MAC LUNG" and look under the "research" tab.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
Oh, one more thing. Consider seeing a pulmonologist who specializes in MAC/TB. You can get advice from the people who run area support groups. Here is a link to the University of Texas, Tyler Microbiology Lab, which organizes this info. If the link doesn't work, google "MAC LUNG" and look under the "research" tab.
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a>
Oh, one more thing. Consider seeing a pulmonologist who specializes in MAC/TB. You can get advice from the people who run area support groups. Here is a link to the University of Texas, Tyler Microbiology Lab, which organizes this info. If the link doesn't work, google "MAC LUNG" and look under the "research" tab.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a><br />
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.maclungdisease.org/index.php?option=com_content&task=view&id=39
">http://www.maclungdisease.org/...ntent&task=view&id=39
</a><br />
<br />