When I first diagnosed in September 2014, I coughed up blood out of the blue. It was initially suspected as TB. But the sputum tests came back negative for TB. I then had an appointment with a pulmonary specialist who ordered sputum tests for MAC and they came back positive. I have had excess mucus for the past 20+ years. But before being diagnosed with MAC, I was in very good health otherwise. With the diagnosis of MAC, my history of excess mucus came into focus. CT scan suggested that I had bronchiectasis which causes me to be susceptible to MAC. So far I have coughed up blood twice.The first time there was quite a large amount and no other symptoms and the blood stopped in less than 24 hours. I did not take any medication for it and had been symptom-free (other than excess mucus) until last month. I had a cold with low fever and chills on and off for a few days and started seeing some blood in my sputum, although there was much small amount this time around. The pulmonary specialist prescribed antibiotics for 10 days. I again recovered with no systems other than excess mucus. I have not had most of the symptoms that are listed above.

I coughed up blood a few times in early 2014 and was reluctant to tell anyone. I had lots of sinus and respiratory infections throughout the years that in hind sight should have been properly managed or refered to pulmonary. I was give the z pac ( which is azithromicin) everytime but it never seemed to take it all away. I went to the ear, nose, and throat doctor for evaluation for a balloon sinuplasty becuse of repeated infections. I told him about my constant clearing of my throat and coughing up blood. He ordered a chest xray and pulmonary function test. Both test results said to follow up with a CT scan. So my primary care doc ordered the ct scan and she called around to find a pulmonary doc that could see me that day. That pulmonary doc said i had bronchiectasis and would need lots of monitoring for infection and lifelong antibiotic treatment.He
scheduled a bronchoscopy the next day. I went to see him the next week for antibiotcs and 2 inhalers he had samples of. I came back in 2 weeks, then monthly for chest xrays and to monitor my symptoms. I really liked this doc as he truly cared enough to call his patients at home and check on them. He had to leave the country to be with his family in iseral, so who could be mad about that. I did go back to ear, nose and throat for the balloon sinuplasty and would say it helped alot and would highly reccomend it for anyone with sinus problems. I've since had a pulmonary doc and a nurse practioner she was better than the doc. at getting medications and nebulizers and a chestwall vibrating vest from hill rom, but they left the practice and the pulmonary doc left behind did not come recommended by anyone. So im seeing a pulmonary doc and an infectious disease student. Im not confident in any of their care. So im reserching and trying to find a doc to handle my bronchiectasis and my mac. Im on the big 3 daily and i take them all at 7 pm. Im having alot of fatigue, feeling drained and i have numbness in my hands and feet and very loud ringing in my ears that makes it hard to concentrate.i did have daily head aches and night sweats but those went way in 2 months. Im also having a rash and occasional hives and chest pain and i can't get anyone to look into it. It's so frustrating and tiresome to find good care. I had a great primary care doc for 10 years and she moved to colorado and I just dont like the lady at the practice. I liked going there because all my doctors were in one place with the hospital and lab all in one. Everything there is fareley new and really clean the way it should be! I hope everyone has a good day and keep shareing your stories so we can learn from eachother!!!
Becky

@chinasmom Becky, it was very interesting reading about your history. Although ours are not quite the same, there are some similarities to make me feel that I can relate to your ordeal. Without proper diagnosis for 20+ years of excess mucus (constant coughing and the urge to clear my throat were driving me and my husband nuts) had led to me eventually coughing up large amount of blood one day. That was the first time I was suggested to see a pulmonary specialist. Before then, my primary physician had tried her hardest to treat me as having post-nasal drip, sinuses, allergies, etc. to no avail. Although I do have allergies for tree pollen, dust mite, etc. and 5-years of allergy shot regimen had made the constant coughing nearly stop, it barely made a dent to the amount of mucus and constant need to clear my throat. It seems odd for me to feel relieve that I know I have bronchiectasis. But it now all makes perfect sense rather than questioning why nothing seemed to help my mucus situation and feeling utterly frustrated. At least I know exactly what I'm dealing now.

Its kind of ashame that we get our diagnosis and in hind sight we see we' ve had these symptoms for awhile. Un treated or under treated our lungs have paid the price. I wish it were different but i dont see things changeing. When you know the truth. You can then arm yourself with really good information and then pass it on. Tell us and your doctors. Thanks for asking questions and telling your story so that i can learn from you!
Becky

You are right. It is very frustrating. About 2 years ago they found nodules in my lungs and it has taken all this time for a diagnosis. I've been on the meds for almost a month. The awful weakness could be MAC treatment or my autoimmune disease-scleroderma.

<br><br><br><br><br>Hi there! I am curious; what symptoms did you have when your Scleroderma <br>first presented?<br> <br><br>

Hi Windwalker, they discovered scleroderma when I saw the doctor when my fingers were turning purple and then white when ever I got cold. They did blood work

<br><br><br><br><br>I ask because my daughter has severe Raynaud's. That sounds like you have <br>that as well. It can be a secondary disease to a primary one that is typically <br>Lupus or scleroderma.Her fingers turn colors too and worse. She sometimes looks <br>like someone has poured scolding water all over her body. She has other symtoms <br>that concern me too that make me think she may have the scleroderma. i.e. she <br>complains that her face feels tight, the skin on her hands look tight, and her <br>arms feel hard, but not from muscle, they feel different. Her dr tested her for <br>Lupus and it was negative. I don't know why he hasn't tested for the other. <br>Would she see a rheumatologists to get to the bottom of this? Thank you, Terri <br>M.<br> <br><br>

I would definitely go to a dermatologist

Thanks, Colleen