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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: 2 days ago | Replies (9354)Comment receiving replies
My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks--no change. So I had an MRI--I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.
I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me--the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.
I am happy to be in touch with others who have MAC and know it occurs more in women than in men.
Replies to "My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably..."
@windwalker @nick52...where in FL will you be? I'm in the Tampa Bay area
@windwalker i am looking forward to see you! I have a nice spare room for you two. How are you feeling now? Hope the pain has diminish a bit at least! Does your jaw hurt or just your teeth? I was mess up big time with my first jaw surgery. I had to have
a second surgery of 10 hours to correct the butchery done to my jaw in Portland Maine. So be careful girl! Do not let anyone convince you of a surgery unless you are absolutely sure you are in the right hand. This was not very well known in 1985 today good
oral surgeon has the best of the technology. Relax and use heat if it helps! Gros bisou!
@winswalker i am in Largo close to Clearwater. We are about we are about 20 miles from Amelie arena. We are going there to watch hockey game. We are going on the 9th of February.
@windwalker ....absolutely get flare-ups....so may not be using the muscle relaxant prior to sleep but will....vary dose between half or whole. It was diagnosed in the Dental section of the medical school. I was referred to a private dentist for RX. The treatment was bite splint and muscle relaxants. He used a nurse anesthtist.sp? who was supposed to hypnotize me. Well the visiting dentist in the corner who was earning CEUs ended up hypnotized but not I. I think the Nurse wanted to shoot me...but I was not able to give up control in a cold room, with itching skin and an impatient person.tdrell
@tdrell, yeah, those don't sound like ideal conditions for hypnosis.
@nick52 , Hi Nicole. I am greatly improved, thank you for asking. The 'hinge' of my jaw hurts as does the extraction site, but only minimally. I have been doing the tmj exercises to strengthen the jaw muscles. I would love to come down and visit you! I can throw two bikes on the rack and come down. You are only 3 1/2 hours south of us.
@nick52, Nicole, you are welcome to come up amd see us as well. Have nice guest room and extra bikes. Beaches 15 min away.
@windwalker how far are you from the 95? We go back home on that route!
@windwalker this is an excellent idea! We are 4 bikes 2 new and 2 old ones.
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@windwalker It's a relieve to hear that you are on amends. Sending you positive thought and hugs.