Discussions
Discussions
NTM lung infection symptoms
Hi - I have had a history of bronchiectasis since 2005. The thing the doctors told me was to be careful if you catch a cold or flu as that can turn into pneumonia. Fast forward to fall of 2014, I had been having night sweats for years but now I felt like I was getting a fever all the time, that kind of light headed feeling, than the mucus increased. I went to the Dr. and was just told I have a bug, take some mucus meds. The low grade fever stayed, along with the extra mucus, back to the dr., this time some prednisone. The fevers went a bit higher and I started just sleeping a lot between coughing fits. Dr. number 3 gave me a script for some super cough meds and ceftin antibiotics. I demanded a chest X-ray due to wanting to make sure pneumonia was not setting in, Dr. said if you are not better in a week than we will X-ray, I told him no we need to do it now!. So I got the X-ray and yes I had pneumonia in both lungs. I was sent for some blood work which said I tested positive for mycoplasma pneumonia. The ceftin seemed to be helping and I started feeling better. Even the cough lessened. I was telling people I have coughed for 10 years and now it is like a bad memory, why hadn't I taken ceftin before this, it is like a miracle. 7 days after I finished the ceftin all the symptoms returned. This was repeated 5 more times when I said this is crazy and found the most amazing ID doctor. Her first ? is why are you here, I told her I was tired of being so sick.....she took my history did an exam ordered some test and said " I believe you have MAC" - followed up with pulmonary Dr., had bronchoscopy and that confirmed the NTM MAI - Than it was the wait for what meds. to take. I continued to take the ceftin until the big 3 were chosen. This all took from Nov. 2014 till May 13th 2015 - "1 year ago today" - I have had 2 neg cultures for MAI, one did show aspergillus which i am not being treated for as It is probably colonized and not causing any further problems. - During this year of treatment I did have an episode of coughing up blood, but for the fast action of my pulmonary Dr. within a week I had another bronchoscopy and a PICC line to treat a very bad pseudomonas infection. This has been a roller coaster of a ride with leaning how to cope with this physically and mentally. I am still learning.......
Norma
Replies
Hi - I have had a history of bronchiectasis since 2005. The thing the doctors told me was to be careful if you catch a cold or flu as that can turn into pneumonia. Fast forward to fall of 2014, I had been having night sweats for years but now I felt like I was getting a fever all the time, that kind of light headed feeling, than the mucus increased. I went to the Dr. and was just told I have a bug, take some mucus meds. The low grade fever stayed, along with the extra mucus, back to the dr., this time some prednisone. The fevers went a bit higher and I started just sleeping a lot between coughing fits. Dr. number 3 gave me a script for some super cough meds and ceftin antibiotics. I demanded a chest X-ray due to wanting to make sure pneumonia was not setting in, Dr. said if you are not better in a week than we will X-ray, I told him no we need to do it now!. So I got the X-ray and yes I had pneumonia in both lungs. I was sent for some blood work which said I tested positive for mycoplasma pneumonia. The ceftin seemed to be helping and I started feeling better. Even the cough lessened. I was telling people I have coughed for 10 years and now it is like a bad memory, why hadn't I taken ceftin before this, it is like a miracle. 7 days after I finished the ceftin all the symptoms returned. This was repeated 5 more times when I said this is crazy and found the most amazing ID doctor. Her first ? is why are you here, I told her I was tired of being so sick.....she took my history did an exam ordered some test and said " I believe you have MAC" - followed up with pulmonary Dr., had bronchoscopy and that confirmed the NTM MAI - Than it was the wait for what meds. to take. I continued to take the ceftin until the big 3 were chosen. This all took from Nov. 2014 till May 13th 2015 - "1 year ago today" - I have had 2 neg cultures for MAI, one did show aspergillus which i am not being treated for as It is probably colonized and not causing any further problems. - During this year of treatment I did have an episode of coughing up blood, but for the fast action of my pulmonary Dr. within a week I had another bronchoscopy and a PICC line to treat a very bad pseudomonas infection. This has been a roller coaster of a ride with leaning how to cope with this physically and mentally. I am still learning.......
Norma
Comments
Hi Delia. Being proactive when it comes to your health is so important. The more common symptoms of NTM lung infection include: a cough, during which you may or may not cough up sputum; night sweats and/or a low grade fever; loss of appetite and weight loss; a lack of energy; shortness of breath; wheezing; and pain around the lung area. There may be other symptoms as well. Tell your doctor about these or any other symptoms you have.
Comments
I had symptoms for nearly 3 years before being diagnosed with bronchiectasis. I went to my family doctor, also an allergist, several times. They both thought it was allergies. I coughed a lot, coughed up some mucus but not a lot, just felt tired all the time and had shortness of breath. One night I coughed up some blood so my husband took me to the ER and it was there that I found I had bronchiectasis. A month later the pulmonologist did a bronchoscope & found I also had MAC. Since then I have been seeing a pulmonologist about 100 miles away who specializes in MAC. I was put on the 3 antibiotics 3 times a week but after 10 months still tested positive for MAC. Now I am on 2 of those antibiotics plus a third, and take them every day. I don't cough up much sputum.....it is even difficult to cough any up for testing. I do use an inhaler & Aerobika. About a year ago I coughed up a whole lot of blood while on vacation and ended up in the ER. I am being considered for a clinical trial of an inhaled antibiotic now. It sure is a long lonely road, as none of my friends/family has ever heard of MAC and I know no one who has it. So not much support. I don't have too many symptoms so unless I get a coughing spell or cough up blood, people think I am fine and am complaining about nothing.
Comments
Hi Delia!
I am newly diagnosed (via bronchoscopy with lavage), but like Rose, mine was more of an accidental find. I've had COPD for 10 years, but no mucous or excess coughing unless I get an upper resp. virus, and then things always go south. During one of these exacerbations I went for a chest xray to check for pneumonia. No pneumonia found, but there were some interesting non-specific opacities. These were tracked by x-ray, and finally CT scans which showed nodules. Still, I had no night sweats, fevers, abnormal chest pain, etc. I do get fatigued easily and often, but that seems to be common with COPD.
I am lucky in that my pulmonologist wondered if it might be a mycobacterial infection from the first xray.
Comments
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