(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I had similar effects but probably not as severe as your step-mother. Ultimately my body acclimated (don't remember how long but maybe 3 months or so). I would jump if the phone rang! Just remember that your Mom needs to be checked regularly for visual, hearing side effects. Not a bad idea to make sure that her thyroid is not out of whack and causing some of the nervousness. Also, not a bad idea to see a therapist so that your Mom would be able to confront and change some of the unreasonable beliefs that she has about this condition. She is indeed fortunate to have such a caring daughter-in-law. Wishing her the best.

@lampstone Hi there. I am sorry your mac is back, but not surprised. My Mayo doc has me on maintenance (preventative) meds although I have tested negative since 2014. It is a light dose of 10 day a month antibiotics. Sometimes a 28 day of tobramycin to keep the pseudomonas away. Were you also diagnosed with bronchiectasis?

Although I haven’t entered the discussion for quite some time, I’m sending my thoughts to all who are challenged with various infections. I also have a question-I was diagnosed with bronchiectasis in 2017 and now nebulizer twice daily with albuterol and 7% saline, along with twice daily vest therapy. I have experienced one exacerbation but no infections to date. Although I am very happy about this, I’m guessing there are no similarities in how this disease progresses?

@migizii Hello, yes, my Pulmo, who sees hundreds of Bronch patients tells me every person’s situation is different. Glad you are doing the work and enjoying results.

Hello, my 73 year old step-mother was recently diagnosed with MAC infection about 1 month ago and she was started on antibiotic regimen (rifampin, ethambutol, and azithromycin). She has since developed extreme debilitating anxiety where she cannot function during the day. Her personality has also changed drastically. She cries constantly, and is terrified of things that would not have phased her in the past. We are looking for answers but not coming with anything. Has anyone experienced anything like this?

I am 71 years old. I was 67 when I began taking those same three antibiotics 3 times a week. After no improvement - I was increased to the same three antibiotics 7 days/week. I continued this regimen for about 4 years.
I began to think I was showing severe signs of dementia after having difficulty finding local area destinations I had known for 30 years. I even had trouble finding my way around Mayo after doing the same routine appointments three or four times a year for 4 years! In addition to confusion and temporary memory loss while on the antibiotics, I also had terrible mood swings and paranoia.
I shared all of this with my Mayo pulmonologist. Since my bacteria count was so low by 2018, it was believed I needed a break; I was put on a “med holiday” for one year. Yay!
During my year off the antibiotics, I realized I was able to find my way around town with no issues, and my “feeling lost” and “in a fog” while at Mayo was also gone. The mood swings, paranoia, and confusion were totally gone. I felt so much better mentally.
But here I am again a little over a year later, my lung health is not good again - and, I am going to find out tomorrow what the new plan is. I do know that my mental health will also be considered when choosing antibiotics. I am so glad and very thankful I have a pulmonologist I can trust. Don’t be afraid to ask questions and to share how your lung health treatment might be effecting your general health. Hoping thus helps a little. And - please tell stepmom’s pulmonologist what she is experiencing. Be Blessed.

Although I haven’t entered the discussion for quite some time, I’m sending my thoughts to all who are challenged with various infections. I also have a question-I was diagnosed with bronchiectasis in 2017 and now nebulizer twice daily with albuterol and 7% saline, along with twice daily vest therapy. I have experienced one exacerbation but no infections to date. Although I am very happy about this, I’m guessing there are no similarities in how this disease progresses?

@migizii Hello. This disease bronchiectasis and it's subsequent issues of mac can progress at various speeds. Some are very rapid, others so slow that people die of something else, or natural causes. There are many variables. For instance, are there other co-morbid diseases present (like pulmonary hypertension, Alpha-1, pulmonary dyskinesia, emphysema, Cystic Fibrosis, etc.). These other co-morbid diseases can help to drag a person down, making it hard to fight off bacterial infections. Some patients also have immunity issues. Some people live in areas where they are receiving extra heavy bacterial loads of mac and/or pseudomonas. Another factor that can affect outcomes is becoming resistant to antibiotics. It is very important to follow an antibiotic regimen.

@migizii Hello. This disease bronchiectasis and it's subsequent issues of mac can progress at various speeds. Some are very rapid, others so slow that people die of something else, or natural causes. There are many variables. For instance, are there other co-morbid diseases present (like pulmonary hypertension, Alpha-1, pulmonary dyskinesia, emphysema, Cystic Fibrosis, etc.). These other co-morbid diseases can help to drag a person down, making it hard to fight off bacterial infections. Some patients also have immunity issues. Some people live in areas where they are receiving extra heavy bacterial loads of mac and/or pseudomonas. Another factor that can affect outcomes is becoming resistant to antibiotics. It is very important to follow an antibiotic regimen.

@windwalker Check this potential therapy out. https://www.genengnews.com/insights/phage-therapy-win-mycobacterium-infection-halted/