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Dec 10, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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.

Dec 9, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Jan 17, 2017 · Typical Carcinoid Tumor in Lungs in Neuroendocrine Tumors (NETs)

Hi dzerfas, I really think you should go ahead and have the surgery. From all of my experience of going to conferences and following what others have done including myself, surgery and getting rid of this tumour before it has a chance to get bigger and spread to lymph nodes is the best way to deal with it, and after you have it removed you should still be followed by someone who knows Carcinoid(Neuroendocrine Cancer). Best of luck. I had my lobectomy in 2002 for a typical carcinoid tumour and am still being followed by an Oncologist.

Jan 14, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Kate and others. I have not posted in a long time. I do however follow all the posts daily and have learned so much. I have had Bronchiectasis and MAC for about 5 years now, but still have not been on antibiotics. I had a Left lower lobectomy in 2002 for a Carcinoid tumour in my lung, and then became ill in 2007, with CT showing multiple tree in bud clusters in lungs, and one slightly bigger nodule. My Oncologist without having done a biopsy of nodule because of it’s small size and scar tissue, has thought it was the carcinoid back again, so has been treating me with monthly injections of Sandostatin, (known to slow growth and minimize symptoms) I also have had terrible arthritis through all this, I have had 2 shoulder replacements and most recently a knee replacement. I am 66 yrs old and still have such a zest for life. I have always been very athletic, loving biking, skiing, Kayaking, so all of these setbacks have dragged me down at times. This summer I decided I would tape up my arthritic knees and get back on my bike, to get my lungs in shape for the surgery. I even went biking the day before surgery, got the knee really sore, but lungs felt great, better than they had in years, I even managed up quite a steep hill.
Now I am almost 3 months into my knee recovery, it’s really snowy and cold outside, at times too cold for my reactive airways, but I cannot wait, till the snow melts and I can get back on the bike, and get that fresh air moving in and out of these lungs. My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year, my sputums have been positive for maic, when I have been able to get a good specimen up. Other than that, I will carry on with Ventolin puffer 3x a day, Alvesco puffer in evening, Airobika, chest physio, and excercise and hope I can stay stable for as long as possible without doing the big 3.
Thank you so much all of you for all your input, my heart goes out to all of you incredible strong people who are going through so much, with coping and living with these diseases.
Hugs to all from Canada.

Jun 9, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Well stated boomerexpert! This forum is great, for those of us living with MAIC. I was diagnosed about 5years ago, and have still not done the antibiotics. I see my Respirologist every 3 months, at which time he looks at culture results, chest xray, blood work, listens to my chest, and talks about my symptoms. Many times I have been ready to go for the anitibiotics, but still so very afraid, and feel so relieved when he tells me my chest xray or CT hasn’t changed, so we will hold off once again. I have never had a fever or night sweats, and do try to practice good lung hygiene with exercise and chest pysio, puffers etc.
I have a history of Carcinoid Cancer in my lungs(never smoked), but did have a lobectomy in 2002. I also have arthritis, and am on the surgical list for a total knee replacement this fall. I am very nervous of how my lungs will hold up, through the surgery and during the recovery period, but yet feel that I should get this done, so I can stay physically active and fight the MAIC. (before I need to do the anitibiotics). And yes, we need to advocate for more research, so that we are not trying to fight with 20 year old treatments.
Thank you to Kate for starting this forum!

Apr 25, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi, I was diagnosed with MAIC, about 5 years ago, and been holding off on antibiotics.(Had a lung Carcinoid tumour in left lower lobe and had a Lung lobectomy then at age 52, never smoked, I am 65 now and have multiple nodules in lungs, probably maic nodules, but being followed by Oncology for return of Carcinoid as well) I see my Respirologist every 3 or 4 months, have a chest xray at that time, and from the results of that X-ray we have the discussion to treat or to wait. Meanwhile, I try to keep active, with walking and a bit of cycling, although I have nasty arthritis and it gets tuff at times. Sometimes when the weather is clear and the air is fresh, my lungs feel pretty clear, but as the air pressure and humidity changes, I get worse, my lungs get tight and I produce alot of mucous, mostly thick pure white, with occasional nasty looking stuff. I go to massage and she does percussions on my chest, I have a vibrating belt I use occasionally, use Ventolin puffer 2 -3 times a day, and Cortisone puffer(Alvesco) once a day. But the best thing is exercise. I felt my best this past winter, when I would go up to the ski hill and walk in the clear fresh air up there. I would like to be like this other gals 90 yr old mother, who has had Maic all these years and never went on the antibiotics, because like you, I am so frightened of all the side effects.
Stay positive and somehow try to adapt to this nasty diagnosis. I was in shock, when I was told I had MAIC, in my lungs(I have what!!)