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Posts (12)

Thu, Apr 30 7:16pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Sounder27- good to hear you haven’t experienced any side effects. I will definitely mention it to my current doctor to see what they say especially since the current antibiotics I have been on for almost a year and a half now don’t seem to be helping much. I would love to hear how your next CT goes since being on the amikacin.

Thu, Apr 30 3:53pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

I appreciate the replies. Yes I have been on on the big 3 daily. Last CT showed new nodules and the previous ones are again noted but getting larger. Concerned if maybe I am becoming immune to the antibiotics and that’s why they aren’t working. I mentioned the amikacin awhile ago to a previous pulmonologist who said stick with the triple 3 because the potential side effects from the inhaled amikacin were pretty bad. I will mention it to my new doctor to see what they think. It’s a terrible feeling when they are agitated. I felt as if my lungs would literally sizzle if water was poured over them. Doctor said the same about the steroid. Worried it would make you more vulnerable to infections. Nannette- Hoping for good news for you with your CT and sputum test.

Wed, Apr 29 8:34pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hey everyone. Been some time since I posted on here. Well it’s been over a year since I been on the triple 3 and I don’t think it’s working. I’m curious if anyone is having similar symptoms…my lungs feel like they are on fire. They are painful and some days are worst than others but always chronically pained. Last 2 days have been worse than normal and now I have a swollen lymph node on my right side of neck. Never had that before. Ever. Hopefully once the travel restrictions are lifted they will do another biopsy to confirm if the MAC infection is still active which I’m sure it is. I feel it anything it’s gotten worse not better. Curious if anyone else experienced the burning pain.

Mar 17, 2019 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Terri, I am in the military and have done multiple Iraq and Afghanistan deployments. I should have more info Tuesday morning after follow up with eye doctor. My eye doctor said she has only read of it and never actually seen it in person before. I’ll keep you updated.

Mar 16, 2019 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Tdrell…I have a follow up with eye doctor Tuesday morning. I will ask for an eye culture. She is convinced it’s an infection from the MAC. The red ring formation around the iris is textbook sign similar to Ocular TB infection. The steroids helped with pain and redness but I’m left with a strange white spot where the red ring was and a little pain left. She said to continue with ethambutol as she is pretty sure it’s not from the drug. Pulmonologist said to stop the Ethambutol but said the eye doctor would know more if I decide to continue with the medication. Frustrating…this whole experience seems to be a roller coaster ride of ups and downs.

Mar 15, 2019 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hi I am curious if anyone has ocular infection from the NTM MAC? I woke up today with eye pain and a red ring under my iris. It hurt enough to go to optometrist. She seems to think it’s from the infection. I was concerned it was from a side effect of the medication Ethambutol. It’s my right eye. Not itchy or runny just very painful and the red ring like where your iris meets the white part of eye. Has anyone else experienced this? I’m on steroids topical drops for now. I guess still take the Ethambutol for now too. Thanks

Mar 6, 2019 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Thanks Irene. I am interested to see what the ID doctor has to say. I was a little skeptical being referred to ID considering they don’t specialize in the lungs but I guess it makes sense.

Mar 6, 2019 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Hello everyone…I saw my new pulmonologist today and he prescribed the rifamprin and decreased my previous 1200mg a day ethambutol to 800mg. I finally feel a little relieved that I have the necessary medicines to help kill the infection. Frustrating I had to wait this long and the previous pulmonologist didn’t think it was needed. I still have yet to see an ID Doctor but the referal was made. What are the advantages of ID Doctor? Any questions I should ask them when I see them? Also anyone with Bronchiectasis what treatment if any helped you? Are inhalers a good idea? My new pulmonologist said that I have moderate Bronchiectasis and he agrees with the MAC infection diagnosis as well. I will be starting the Rifampin tomorrow. Anyone had any issues with this medicine? The other 2 seem to be ok for me so far. It’s been 28 days since starting the meds. Hope everyone had a good day today and ready for spring to arrive!