New Diagnosis of MAC/MAI & I'm scared

Thanks for your assistance. I have no side effects so far. I am followed by an ocular clinic and had no damage to my eyes as of my first appointment (one month after starting the medications). Also monthly bloodwork, EKG and will talk to my doctor about hearing tests as I understand that hearing can also be affected.

Like sueinoregon, I am terrified of taking these medications and have been reminded by a few people that I am putting poison into my body by taking them - not very helpful. I'm also terrified of not taking them and risking permanent lung damage - my doctor said I could wait until I had cavitation in my lungs, which isn't anything to take lightly either. So I opted for the medications.

I appreciate being able to connect with other people with mac as it is a very isolating illness between the exhaustion and intermittent nausea (which I thought would get better on the meds). Also, I have begun to see so many things in my environment as sources of infection.

I see a respirologist who diagnosed the mac and started me on the meds. There is a specialist in a city near mine so I will ask for a consult but have read it is not a good idea to stop taking the medications once you've started - unless you have bad side effects (eg. eyes or liver function). My respirologist said he'd refer me anyway if I had any complications.

Anyway, forgive my rambling but it is overwhelming at times. I expect that I will adjust to this new reality in time.

Thanks for your assistance,

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.

Laura34....for sure don’t let military( I assume) eye Dr minimize your eye situation.....insist on additional imput.....who knows what exotic organisms you may have been splashed with ...and into eyes...in the areas you were in....please let us know how Tuesday goes....please be assertive NO MATTER what your rank or normal is....tdrell

@kathyhg, Hi there. Welcome to our group. The warnings that come with these 'Big 3' antibiotics are scary, which is why I declined them years ago. I declined them because I feared for my liver. I was worried because I liked to drink 2 cocktails every evening. mainly because I felt so bad from the constant, violent coughing. My whole torso hurt from that. Plus, I was trying to escape other stressors in my life as well, and felt that my body was too fragile to take the meds. I was worried that the alcohol plus the meds would kill my liver. I have asked my current dr about the toxicity of those meds, he said they really aren't that hard on your body; just have to stay on top of the vision and hearing changes if any. He believes some people are being overly medicated with these drugs too, so that adds to the confusion. It is all very frustrating that there is no clear definition as to HOW & WHEN to treat this disease. I was diagnosed in 2005 with mac, and did not ever go on the big three. I am not certain that was a good choice as I have watched my lung function go steadily downward year after year. Finally, I sought treatment at Mayo Clinic in 2013 and my dr was able to slow the progression of losing lung function at the rate I was. If you saw my chart graph from my lung function test, it shows that I am almost dead. Mayo was so worried at how low it was; that they did pre-qualifying tests for a double lung transplant. Although I do not feel very ill, or act it; my dr says I am an anomaly. A real head scratcher. According to my lung function, I should not be doing so well. It is all about attitude. I just decided one day that I was not going to be sick any longer. Yes, I have crappy lungs, but I now can walk as long as I want, ride my bike as long as I want, and I live my life in happiness. There was a time when I couldn't do any of that. I cannot advise you on whether to take the Big 3 treatment or not. Treatment should be customized for each individual. You can click on my picture icon to see how Mayo treated me without the Big 3.

@windwalker Terri, you're amazing. Thank you for being our mentor on this site. We're very lucky to have you. (along with the other "older" members, and by that I don't mean age, who have done great research) And I agree, attitude is a big part of dealing with this disease.

An interesting article about soil. https://books.google.com/books?id=QdcLHCPgG-wC&pg=PA47&lpg=PA47&dq=PBS+irish+soil&source=bl&ots=Qn2NrJuEXW&sig=ACfU3U1BeKAwL5td5cj2Q7pPkyd5l-M0EQ&hl=en&sa=X&ved=2ahUKEwiTtYGC0o7hAhUK2IMKHTAJDOcQ6AEwCHoECAIQAQ#v=onepage&q=PBS%20irish%20soil&f=false

Thank you @windwalker for the informative and sensible reply to my post. I am gradually coming to terms with all of this and appreciate the opportunity to learn more about mac from mentors. I am tolerating the medications and I'm compliant with the medication and the monthly exams that are watching for kidney, liver, eye and hearing changes.
I had never heard of mac before this past year and have had a steep learning curve in trying to understand the bacteria and the treatment. I am more grateful to my respirologist after reading posts by people who were misdiagnosed for lengthy periods of time and I am also encouraged by people who have successfully taken the course of treatment.
This forum also makes it easier for my husband to tolerate my incessant questioning of everything I learn and experience as I feel like I have a place to share my questions and concerns. I can see that attitude really helps to deal with this.
Thank you so much!

https://mysteriousuniverse.org/2018/12/mysterious-ancient-irish-healing-soil-kills-modern-superbugs/

@windwalker Hi Terri (and everyone), I just found the website https://bronchiectasisnewstoday.com/ It has lots of useful articles. There’s one that indicates exercise is helpful, and may explain why I and some other the others here seem to be ok without antibiotics: https://bronchiectasisnewstoday.com/bronchiectasis-treatment/exercise-training-for-bronchiectasis/
Another article from the same website suggests that it’s important for those without treatment or symptoms to be carefully monitored over time: https://bronchiectasisnewstoday.com/2017/10/10/untreated-patients-with-nodular-bronchiectatic-mac-lung-disease-fare-poorly-over-time-study-says/

@lorifilipek Thank you for posting these links. It really is important to exercise. I recently returned to the gym after a 3 month break. I take a 70 minute aerobics class twice a week. I already feel much better. And, yes, absolutely; the untreated need to be monitored on a regular basis!