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@kwilbur

Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria but my chest scans are showing indications. My doctor, who I trust and regard highly, has recommended chest scans every three months. When it comes time he will cleanse my lungs, as I understand with a saline solution and begin antibiotics. What concerns me so much is that I am told I will not be able to work for 16 months. I am on my own and have worked as a teacher at the same school for 31 years! And, yes, I love the kids. It makes me so sad to think I will have to stop – also risking losing my house.

This is the first time I have seen a site where other people talk about their experiences. I am sixty-four and am also working with a very proactive internist to help me through the weakness and weight loss.

Well, I guess this is the beginning of my journey. And I WILL keep educating myself. Very best, Kathryn

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Replies to "Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria..."

Hello Kathryn!
I am glad you have joined this very supportive forum. You say that your pulmonary scans show evidence of a possible MAC/MAI infection. There is a protocol followed by pulmonologists in order to properly diagnose and treat this disease.
My suggestion for you is to request a bronchoscopy, followed by a bacterial culture of the fluids and, if positive for Mycobacterium avium, an antibiotic sensitivity test in order to determine which drugs will be effective in your case.
I am a 59 year old dentist, with a background in microbiology, and I have been diagnosed with MAC/MAI earlier this year. I am on my fourth month taking the three recommended antibiotics, Rifampin, Clarithromycin and Ethambutol. I have noticed a decline in energy since starting my therapy. I still manage to workout daily and carry on my normal activities. You are not alone in this struggle.Here you will find good suggestions on how to best tolerate your prescribed medications and how to be a good, well informed self advocate. Best wishes to you in your journey. There is light at the end of the tunnel.
Liliane

Lilianne, what a great response to Kathryn! Each of us has had a different journey .. but yet the same journey .. and I think it helps SO much that we all share our own unique perspectives so that new people see how each body and experience can and is different so they know not to be concerned .. that THEIRS will be their own journey .. NOT just what they may read about in one individual posting.

Hugs to all on our indeed shared journey! Katherine

I am so heartened by this personal response to my posts. My pulmonologist
wants to go ahead with what you suggest when he is certain he can get a
good sample. He has cautioned me though about the strength of the drugs. I
am so worried that I won’t be able to work. I have just started my 31st
year of teaching and seem to be making the hours – 12 hours days with the
drive. You are all so inspiring. I am so glad I found this site.
Thank you.

Believe me, it gets better!. In 2009 I was coughing blood, dizzy, no energy. I was misdiagnosed for months but then I demanded a CT scan and the results were identified, MAC. It took 3 to 4 years before I truly felt normal. I avoided going places because I would always cough. I’m sure people thought I was a heavy smoker. I still have to clear my lungs once a day, but after that I have no other symptoms. I’m 61. As many women agree, I believe there is some relationship to menopause. I was very depleted when tested. I have since been on hormone therapy. I take probiotics and get plenty of rest. Everyone is different, but after a while it all becomes less intimidating and you start focusing on other parts of your life. You might to take a leave of work until your energy comes back, and it will. It is a long journey and I will always wonder why I would get this infection that I never even heard of, but I did and all I know is there are far worse illnesses to have.

Hi Kathryn,
Its good that you have found this forum. Lilian suggest bronchoscopy, I did have that just to make sure I have the MAC and I did CT Scan. Shows I have the MAC and Bronchiectasis. I was upset and felt alone b/c nobody knows about MAC, even my own PCP didn’t know much about it. This forum help me so much and the support of everyone. I will pray for you and hope you can tolerate the meds.
We are all here for you. Cila.

Thank you for your story Shelby .. each positive story helps new people on their journey because it is so scary in the beginning. I was diagnosed in 2007 .. and it is important for us that have come out on the other side to let people know that it DOES get better!

I SO know what you mean about the coughing .. to this day in a theatre I mention to the people beside me that I have “a lung issue .. but it is not contagious” .. BECAUSE I don’t want them to be concerned that I have a cold or the flu. I want people around me to have a pleasant evening and for whatever reason I cough a LOT in close quarters .. OR when I talk a lot.

For me .. I had early menopause .. age 48 .. so I was long past menopause when I was diagnosed .. so this is a goofy disease .. seems like no rhyme or reason other than perhaps some genetic pre disposition plus compromised immune system in some manner.

I also take a daily probiotic and get plenty of rest after ending my antibiotics in May 2014 and clear my lungs twice daily. Again, thanks for your positive input! Katherine

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