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

Discussion
Comment receiving replies
@macinpa

SueinMN….thank you for replying. I've been going back in the posts trying to find you.
I started my first treatment on May 14th. All three at once. I lasted for two weeks, then the nausea started, plus fevers, body aches, fatigue, I voice even changed. My bloodwork was all over the place….especially my heart and liver. I was thinking Covid or Flu. My Doctor went to Canada on a vacation so I went to the ER. It was neither. I stopped taking the Big 3 immediately and it took nearly two weeks to get back to a somewhat normal life. I told my doctor I really couldn't start again until after the 4th of July. We were having company and I had one more wedding cake to make and couldn't be sick. Also, requested that we do it different, like I've been reading on this website. Start with one for a week, then add a second for a week, then add the third. I have no symptoms of MAC. It was found by chance with a CT scan of my abdomen. I'm going to take them at nighttime and see how it goes. If possible I would like to keep communicating with you. I can send you my e-mail address if that's allowed. Next question? Do patients talk with an Infectious Disease Specialist in addition to their Pulmonary Doctor? Thank you again, MacInPa

Jump to this post


Replies to "SueinMN....thank you for replying. I've been going back in the posts trying to find you. I..."

Hi Sue, Is your 3x's a week maintenance or normal dosage? My Doctor usually does it daily for 6 months, confirm negative follow-up cultures, then convert to 3 days a week. He also said he increases the Ethambutol dose when going to 3 days. He also mentions that 3 times is for patients with less significant "burden" of MAI. I don't really know what my burden is other than I don't have symptoms and never have. My MAC was found by change with a CT Scan of my abdominal area. Thanks, MACinPA

  Request Appointment