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

@tdrell, hmmm Terri, aren't our bodies SOOO DARN complicated! Thank you for the explanation! Yes it explains it .. BUT I sure don't envy you . . but then again .. most of us don't have a "great and wonderful" journey of it .. right?! BUT "attitude of gratitude" it could all be SO much worse for ALL of us! Hugs! Katherine

@irene5, Irene,@virtuous69, @cindyrnc, Cindy @windwalker and @ling123, Ling I just found an interesting article that I just placed under "Discussions" .. it is a bit technical .. BUT I think it answers a LOT of questions about MAC/MAI .. would you take a few minutes and glance over it .. see if you think it might help our Group at all .. give me your opinions? I value your input on this!! Hugs! Katherine
https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

Hi just wanted to let you know that I am now Ok no blood stain in mucus, I still have phlegm though but it is clear not yellowish. So I just continued my deep breathing excercise. Have a great weeek ahead everyone!

@katemn Hi Kate. I do not regularly follow this thread because there are so many posts and I often do not have the time, but I am curious about one thing. I can remember reading or perhaps seeing on TV a story about a young girl who had something where once or twice a day she had to lay on her bed, face down with her face hanging off the bed and one of her parents would thump her back to help bring up mucus. Would that have been MAX/MAI?
JK

That is called postural drainage. It is used for any child or adult with lung issues that have copious mucous production or even post surgery. I used to have to do that on a child with cystic fibrosis years ago.

@imeehaigt Imee, not a bit surprised .. the blood in mucus typically DOES come and go in Bronchiectasis .. not to worry! Hugs! Katherine

@contentandwell, and @irene5, I am not knowledgeable about this but I am pretty sure Irene is accurate in this .. cystic fibrosis .. hope this helps! Hugs! Katherine

Hi Julia, I am 74 -year female named Andrée,I also have been diagnosed with bronchiectasis and pseudomonas around May 2016 . I only found out about 3 months ago while looking through my files since my Dr retired and the new Dr was not interested in paper work but works only on the internet.
I was given all my paperwork and discovered this report from the lung specialist. I must explain that I live in Vancouver BC and that I was seeing a clinic Dr for approximately 8 years , the lady was very busy and obviously forgot to read it or mention it to me.
I kept getting bronchitis infections from fall 2016 and was treated with ciprofloxacin 750 mg.

Since I was leaving for Florida for a length of time in January, the specialist had given me about three repeats of this prescription.
When I arrived in Florida, I had already started to have a very raspy voice and it continues to this day.
I now assume that it must be also due to the three inhalers that I now use twice a day. I also get a very dry mouth and I have to drink lots of water and juice in order to alleviate these symptoms.

I finally had to come back home to Canada earlier than I planned because the antibiotics where not doing the job.When I saw the GP on my return and explained my situation she said that I had taken way too many antibiotics and sent me on my way with nothing.
I became so sick in bed by this time with a horrible sinus infection along with more bronchitis. I was spitting and blowing my nose with secretions...so much so that I slept with my box of Kleenex in the bed.
I started to become short of breath and went to the Emergency Hospital, they gave me another inhaler along with some IV.
I went home and my GP called the next day and prescribed Amoxiclan on Feb 17th.

This GP retired finally in April and that's when I found the report in my files. I am was extremely upset to read this report in my files.
I had never heard of these terms "Bronchiectasis " and "Pseudomonas " as I read this report, I see also he is mentioning previous hemoptysis which I have no idea what that is. I will have to check Dr Google!

Since this incident,I am somewhat better but I have a lot less energy, I have a new Respiratory specialist who gave me a prescription to analyze my sputum,unfortunately I can no longer bring even a tiny amount for a test.
My voice is very raspy and I have no idea when this my normal voice will come back.
I found this Mayo clinic forum and I am very thankful that I can read about other people's experiences as I try to educate myself to my new situation. Thank you for listening to me, I wish everyone the very best. Andree

Andree: What a horrible time you have had! Seems like no one really cared about you. Hemoptysis is caughing up blood, or bloody sputum. Some of us get that. I hope they test you for mycobacterial disease, actually, you should insist on it. We all have bronchiectasis and most have MAC or MAI along with it. Others on the site will talk to you about pseudomonas and what they were prescribed. Sounds like you have to start over and figure out exactly what is going on. Read all on this site. We all have the same stuff and can suggest what to ask the doctors. xoxo Christa