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

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.

Your stepmother is not alone experiencing mental and emotional shifts on these drugs. Mental fog,anxiety getting upset and very sad were a way of life for me the first 6 months.....I hated the way I felt and knew it was the drugs but that was little solace. Eventually my body got used to these chemicals and I regained my composure, peace, and normal personality...I don’t think you can overestimate the havoc these drugs have on us....they are administered to attack the MAC but a side affect is damage to the parts of our brains which control our wellbeing. Arikayce is a new drug which may help as it does not enter the blood stream but goes straight to the lungs....you might look into to that for your step mother. Good luck. She is very lucky to have such a concerned stepdaughter.

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?

@stsagris, Oh that poor woman!
Have you asked her dr about putting her on a mild sedative or anti- anxiety med? At least long enough to retrain her brain not to freak out or until she acclimates to the meds.

Yes. Since the beginning in 2014.
I saw the radiologist report of my chest CT last week. First time I have had “tree in bud” on an X-ray.

@lampstone Pam, as my dr explained to me....when you have bronchiectasis, you are never out of the woods from getting mac and pseudomonas. That is because the lungs are structurally damaged and will always be susceptible to trapping these germs. My dr is treating the bronchiectasis, not infections. I had the tree in bud thing going on also.

@kathyhg Hi Kathy. Just want to wish you luck with your dr appointment tomorrow. Hugs!

Thanks! I have my list ready.

Yes we have tried several and none of them are working. Just looking to see if this is a possible explanation. Thanks for your reply!