Bronchiectasis: New Diagnosis

Hi Carol. I was diagnosed with MAC and Pseudomonous early 2019 after bronchoscopy. Local pulmonary doc put me on the same meds as you daily to take on an empty stomach first thing in the morning. After a short period of time I would have nausea but not vomit. I also had numerous BM's every day. I am a slim person anyway and then lost 15 pounds, lost energy and appetite fell off the charts. My doctor relocated to Birmingham from Montgomery. After 6 weeks I developed what seemed to be turning into chronic sinus problems. On a follow up visit the doctor said I had to gain weight and get my sinus cleared up. Then he said to stop taking all the meds. I even asked if I had to take them all at once and he said yes. Either take them as ordered or not at all. Then the cherry on top, he said "You may just have to live with it." Lots more story and can post what happened next but have ran out of time at the moment. There is hope. Faye

@marellen Your doctor probably put you on a 7 day/week regimen because of the cavity. I started with that treatment as well but was unable to tolerate it. With MAC you need to have a close relationship with your doctor. Talk to him or her! Your doctor may have to lower the dose of one or more of them. Some of us are on a 3 day (MWF) schedule. If you can tolerate two perhaps you could do an inhaled Arikayce which goes right to your lungs but is not without side effects. Talk to your doctor. I’m sorry you are experiencing those side effects. My guess is they are dose related. irene5

@fdixon63 I would be very interested in “what happened next.” irene5

None of this sounds good. I really don’t know what to do from here...thank you for your response.

Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the University of Birmingham by a pulmonologist who did a bronchoscopy with several cultures and one grew out MAC.
I was started on 3 antibiotics Rifampin, Ehambutol and Azithromycin. High doses every day due to a cavitation. For the 5 weeks I’ve been taking the antibiotics, I have been nauseated and vomiting after taking the Ethambutol. Has anyone not tolerated the antibiotics? If so what did your doctor do?
I appreciate this group. Thank you. Carol

@marellen The best thing I can tell you is that you found an awesome support group here. There are many stages with this disease in terms of one’s emotions. The bottom line is life “before MAC and life after MAC.” We all lean on each for support, and it is helpful. Everyone’s journey is different, but like COVID 19 “we are all in this together.” And it will get better! irene5

@marellen I too had problems with nausea from taking the drugs in the morning and on an empty stomach. I consultation with the pulmonologist's very experienced nurses (he was not very approachable) I switched to taking the meds at bedtime with a small amount of (non-dairy) food. I still had the nausea, but because I was asleep through a lot of it, it was tolerable. When I finally addressed it with the doc, he wasn't too happy, but said it was better to take it on that schedule than to quit. I initially was on 3X/week, then had to increase to daily due to cavities (since cleared!) - I don't think I could have tolerated daily at first. Maybe your doc would consider backing off for a while?
Also, I found it easier to deal with the nausea by eating very small amounts every hour or two, so my stomach was never empty or full. I had to force myself - sometimes literally setting a timer. Just make sure what you choose to eat is very nutritious - I chose cheese, yogurt, protein bars, fruit & vegetable smoothies made with extra protein powder, cashews, boiled eggs, as well as a few fruits.
Good luck!
Sue

Hi @marellen, I'd like to also add my welcome. I moved your messages to this discussion
– Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/

Here are a few discussions that I recommend reading (and joining in):
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
– You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
– NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

I encourage you to browse through all the discussions. See a list of all of them here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

Keep asking questions and then ask some more.

@marellen For nausea I had Ginger lollies and licorice and ginger tea, it was fantastic and all natural.

@marellen. Sorry I could not finish my post this morning. When the pulmonary doc. said "You may just have to live with it" I was stunned and afraid. Also wanted to mention that he nor his staff ever gave me a single piece of literature about this disease or possible treatment. It so happens my sister in law is a retired nurse at Mayo in MN. In talking with her she knew about Mayo Connect and suggested that I get on line with the group to see it there was anything I could learn there. I read posts for a couple of days and then decided to post my experience to that point. Within a couple of days a woman in the Birmingham area sent me a message saying she had a similar experience with a doctor in Birmingham. She started reaching out and found a doctor in Atlanta. She had seen him twice and was extremely pleased with him. She shared his contact information with me. I felt I needed to try to get an appt. with this doctor. I called in August and they said it would be February before I could see him. OK, I'll try and live till then. Now here is where God took over. (He was really at work before that.) Anyway, the doctors office called me in just a few days and said, "Can you come Friday." Wow, you bet I can. I'm getting too wordy but it has been such an experience. I went to Atlanta and when I left I was walking on air. This doctor knew what he was doing. He said I probably should not have been on medication at all. I walked out of his office with a nebulizer and a prescription for 3% Sodium Chloride and a lot of printed literature. My first sputum to him grew out Pseudomonas (multiple colonies). I had to have a PICC line in place for 2 weeks and nebulize Tobramycin for 28 days. That cleared things for a period of months. I again tested positive for Pseudomonas in February 2020 but not as severe as last September and I'm finishing up another round of Tobramycin this next week. I will then send in more sputum to see if it is gone. Dealing with this disease at times is tiring, frustrating and mystifying. Don't be afraid of getting another opinion. I have learned so much from this group--thank God for each and every one of these wonderful folks who step up and share. Because of reading about the difference between 3% and 7% Sod. Chloride I contacted my doctor and asked if he would change my prescription--he did. OK, I gone through all I could think of and hope it was hopeful. We must be brave and advocate for ourselves through this journey we're on. May God bless you.
Faye