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

@boomerexpert Agreed. It sure isn't.

Hi Phyllis,
Good to hear from you. I take liquid (refrigerated) probiotics ie live not freeze dried I just reckon they are more easily biologically absorbed! I take capsules when away the more more per billion per capsule and I only go to Whole Foods for them.
When I first took the ethambutol I had my eyes tested every four months for year. It was expensive but it to give me a baseline for what I can tolerate . I was fine no problems. I haven't had my eyes tested and I'm not going to unless I have to be on the big 3 for over 6 months thi time. Last time I was on the big 3 for a year every other day. As much as it's the optic
Nerve that can be affected it's the possible colour differentiation problems that can be more probable. Only we are all different. Id say check it out with the eye exams to be conservative one can't loose!
Hang on there!

Hi unicorn. My daughters, both nurses, one in an ER, and my doc have assured me there is no risk of transmission to my little grandkids. The only restriction my doc gave me was to stay away from my transplant patient cousin until I have 2 clean sputum cultures. That's because he is immunosuppressed. In fact, I am far more likely to catch a virus or infection from one of them.

Here is a new question for all of you. How common is multi-generational occuence of bronchiectasis?
My mother had bronchiectasis, probably from a combination of recurrent lung infections and rheumatoid arthritis. She had bouts of pseudomonas pneumonia, but died in her 80's from heart issues after several strokes.
I have bronchiectasis, probably from chronic asthma and serious lung infections. I also have MAC and have had pseudomonas pneumonia.
My husband has bronchiectasis too, from rheumatoid arthritis, but no MAC or pseudomonas.
Now our under-40 daughter has been diagnosed with bronchiectasis. She has at least one genetic marker for CF, but tested negative for the disease at the university of Minnesota. She has had chronic lung, sinus and digestive issues for most of her life, including bouts of intractable asthma. She is being tested for MAC. Another daughter has no known lung issues at this time, but had asthma as a child and teen, and gets pleurisy almost every winter.
One of my siblings also has bronchiectasis, as well as serious allergic and lung issues.
Is anyone aware of any cross-generational studies?

@sueinmn Hi Sue my dad and my dads relitives both had lung issues , which they passed away from, I and we all have 1 CF gene along with my children. I think that CF gene has alot to answer for with our lungs. We also have Gerd sinus and allergies/non allergic probs like change of temperature. I definitly think you are on the right track. not fun

@bevmac Yes, positive thinking and determination do definitely help.
The Big 3 drugs can be brutal for some. But for many the side effects are not too bad. (I expected a bit of a battle to fight this thing! LOL).
The decision to give the drugs a go is yours. But with lung cavities, it's getting a bit more more important to at least try them for a few months if you can. You might have some (smaller) side effects that everyone gets from the disease as well as from the drugs. And I've found that many things that were a problem in the first month or two start to settle down a bit more after a while and you can live with them. Having periodic eyesight checks, liver function tests and hearing tests helps to monitor things.
My lung doctor specialises in NTMs. She gets me to take the drugs in stages in the evening, so I watch TV or sleep through most of the side effects. For example: 6pm Rifampicin, 8pm Ethambutol with my evening meal, and 10pm Azithromycin just before bed. She also recommends taking a good probiotic every morning with a prebiotic (Inulin) as well. So far that's really helped with gut issues and prevented diarrhea. I also take Vitamin D and frequently inhale pure Tea Tree Oil (Melaleuca essential oil) -- the research supports using these things to fight mycobacteria.
I'm in Australia too -- Brisbane. But no matter what country we live in, you've come to the right place. This forum site is the best because the people are so nice and helpful and responsive.
Lots of luck and courage to you

I have a terribly sensitive gut. Have trouble with most things other than Tylenol. Still stupified that I do so well on the meds. I started them a week apart both times which helps immensely. And again, if your doctor is willing to let you suffer with them and not keep tweeking, you have the wrong doctor. My doctor in Texas is invested in seeing that I have the best life possible at all times. When he tried a new med on me and it put me to bed, I called him and he said "Throw that damn stuff away. You can't be like this."

Tdrell....There is no way to thank you enough for directing me to that video. It has confirmed my position that I need to just get this done. Dr. Mitchell is obviously "brains on wheels" and has this surgery down to a fine science. I have no hesitation putting myself in his hands. The video confirmed it. So much info on there otherwise also. Again, thanks a million!!

it's nice to have someone closer to my ago to relate to as we are both starting on this journey at a later age than most. I am 80 and you name it I have have it! I am worried about my vision most of all....I guess time will tell

@sueinmn thank you