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

@windwalker Hi Terri, thank you so much for writing back so fast. It really helps to not feel alone in this. What is hard for me is I am not immunocompromised, and i don't understand why I have this. i have been a very healthy and active 56 year old normally runs 5-6 miles a week and takes ballet, hikes, dances, etc. I don't smoke, (quit 30 years ago) but I sound like I have emphysema right now... I realize that I have been very lucky with my health until now and am still lucky but it's hard to have something out of the blue that doesn't seem to have a cure. Anyway, I'm glad I found this resource and thank you for the tea recommendation. I will definitely go get some tomorrow!

@skylarkny Just to make you feel even less alone, I have bronchiectasis and MAC. But, just like you, I'm not immunocompromised and have been very active as well, playing tennis all year round several times a week. I've never smoked and rarely drink. But I coughed up huge amount of blood completely out of the blue one day (after having played tennis for 1.5 hours no less). I spent a night in the ER and continued to cough up blood until the small hours of next day. The words "TB" and "lung cancer" were throwing around all night long and everybody immediately gowned up and put on face masks. I was terrified and feeling completely alone although my husband was right there by my side. When my diagnosis came, I was caught off guard as I had never heard of MAC. The only difference that you and I now have is that, after the blood bath night, I went back to lead a normal life and I still am, with no treatment of antibiotics and no symptoms that others have complained of having, such as fatigue. However, I do still cough and have thick mucus. I don't expect that to go away any time soon, or maybe ever, due to my bronchiectasis. And I'm learning to cope with it the best I know how and not to let it hinder the way I would like to live my life. Hope you eventually find a treatment that suits your situation and gets you back on track to being active again. I'm sure it will happen. We just have to keep a positive outlook and never give up.

@skylarkny Hi, I have not posted in most likely a few years, although I have continued to read most of the posts and have learned alot about this terrible bacteria that lurks in our lungs. I do find it confusing as to how to post back or remark on a posting I have just read, so I am not sure if I am doing this right. So firstly I would like to comment on the above post, I am so sorry for you that you spent such a scary night in Emergency coughing up blood, how horrible. I have had Maic and Bronchiectasis for several years now, and have never been on antibiotics, I have avoided them for fear of all the side effects that most people have mentioned here. I too am very active, biking and walking every day. I too produce alot of mucous, and work constantly trying to clear it from my lungs, with puffers, inhaled hypertonic saline, chest physio and aerobica. I cough alot at night. I had a Neuroendocrine tumour in my left lung 16 years ago,(never smoked, always healthy) and had a left lower lobectomy at that time. I think I started colonizing maic from either hot tubs, or tropical country shower heads, as my lung were most likely scarred from the big surgery and most likely I was immunocomprised.
I am now at the the stage of more changes on my last CT, and feel that I may have to go down the road of the big 3, but would still do everything to avoid that. I was trying to find any clinical trials that used inhaled Amickicin as a first line treatment. Any thoughts? cheers

Hello Joanne & skylarkny - I too am an active young senior, and was recently (June 2018) diagnosed with bronchiectasis, followed by diagnoses of pseudomonas & MAC - after years of asthma, a couple years of repeated bronchitis & unrelenting cough. I too was frightened by the prospect of the "big 3" but my pulmonologist was seeing rapid degradation in my lungs, so I relented & tried it. The side effects for me are not as dire as I feared, and after several months, the cough has abated and the fatigue is less, so I think I did the right thing. I have a followup CT & sputum culture this month to track progress. My doc has been treating MAC for over 20 years, and he says in his experience, only about 25 percent of patients have major side effects from the antibiotics, and less than 10% have to quit treatment altogether. To minimize side effects, I have to take all of my meds at bedtime, and with a small snack even though they may be a little less effective that way. Taking on an empty stomach in the morning made me too miserable, and I know I could not complete the course, so this is my compromise. I also use lots of probiotics, and drink lots of ginger tea or suck on real ginger candies to ease nausea. Now if I could just get my appetite back...

@heathert Thanks Heather, your advice and help is great. Hugs, Annie

@summer33 I have seen only my GP/primary carer. Having difficulty getting in touch with the Specialist because I am a 'public hospital' patient. (In Australia, many people on lower incomes go to public hospitals because they are cost free. But like the NHS in England you can't choose your hospital doctor). I will see the mycobacterial specialist at an appointment in 10 days time.
Yes Azithromycin can cause hearing problems and has some bad side effects but so do the other drugs in the big 3. But the Azithromycin is probably the most important drug for fighting this NTM.
For me, I was just a bit shocked to develop it so early in my treatment. However, so far the tinnitus I have is there but not too bad -- it gets a little bit worse as the day goes on. If it remains and doesn't go away, I can accept it as the price to pay to treat this awful illness. (But no, I definitely don't want any of the serious side effects that this drug or the others can cause! Please not for me, or for any of us -- I pray for that. The smaller side effects I will do everything I can to accept).
Ethambutol and Rifampicin / Rifampin (both in the big 3) can cause leg pain.and eyesight problems. Tell your doctor or specialist if you have them. Good luck to you, and to all of us. Annie

@irene5 so glad we both found this group. Hugs, Annie

@helem And I love you back Helen,

@sueinmn thank you for you reply. Do you mind me asking where your Doctor that has 20 years experience with treating Maic is located. I am in BC and have been pretty happy with my respirologists, but it is always great to know of other experts out there, especially if they are in Canada. I have considered Mayo Clinic, but have not got to really looking into yet. Good luck with your continued treatment, I will take note of how you take all the meds at bedtime.

@pfist Hi Shari! How are you doing these days? Just curious, did you ever ask your doctor about Coloidal silver? I know @kristiemlove would also be interested in hearing about this.