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loyd1230
@loyd1230

Posts: 1
Joined: Oct 12, 2011

mycobacteria

Posted by @loyd1230, Oct 12, 2011

This is a lung condition my wife apparently caught in Nevada. It is like tuberculosis but is not contagious. It has flair ups and causes coughs and shortness of breath,and can be life threatening. Anyone know anything about this disease.

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loohoo78
@loohoo78

Posts: 1
Joined: Nov 10, 2011
Posted by @loohoo78, Nov 10, 2011

Her symptoms are very similar to mine, I am seeing the Pulmonology Dept in Florida next Thursday, The only culture that came back positive from the mass they removed from my right lung was from a mycobacteria, I still have the symptoms so if they tell me something Thursday, I will post.


greenest1
@greenest1

Posts: 3
Joined: Apr 27, 2012
Posted by @greenest1, Apr 27, 2012

Hi! This is my first post ever here. I have MAC lung disease which was discovered a year or two ago. I have been on three antibiotics for the past six months and have about another year to go. For anyone who may be of interest, I belong to a private group of about forty people with this malady on Facebook. Very nice group. If interested just go to facebook Mac pulmonary disease and ask permission to join. In the meantime, good luck to you…….


shirslight
@shirslight

Posts: 2
Joined: Apr 20, 2013
Posted by @shirslight, Apr 20, 2013

How are you doing? Have you been on any treatment for the past two years?
I am trying to decide whether or not to start treatment or let it go.


Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011
Posted by @katemn, Nov 21, 2011

I was diagnosed in 2008 with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) .. am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects! If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics!

Good luck to you!


shirslight
@shirslight

Posts: 2
Joined: Apr 20, 2013
Posted by @shirslight, Apr 20, 2013

I have recently been diagnosed with mycobacterium avium complex and am trying to decide whether or not to begin treatment similar to yours. How are you doing? Are you still on treatment?


Joyce Ardell
@joyceardell

Posts: 1
Joined: Jul 25, 2013
Posted by @joyceardell, Jul 25, 2013

I was recently diagnosed last month with MAC/MAI I need more education I need a second opion I had a bronchosropy at University Wis. I would like to see a specialist that concentrates on this disease. I am a 16 year breast cancer surviver. I liked your information. I did google that before. But I have all sorts of questions. Not good at these chacts u can emal me please. Thank. u.


david
@dt14145

Posts: 5
Joined: Sep 27, 2014
Posted by @dt14145, Sep 26, 2014

i have had mac for about 2 years need to ask some questions, david


david
@dt14145

Posts: 5
Joined: Sep 27, 2014
Posted by @dt14145, Sep 26, 2014

any info on mac night sweats. david


david
@dt14145

Posts: 5
Joined: Sep 27, 2014
Posted by @dt14145, Sep 27, 2014

how do i connect to people with mac. david


Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011
Posted by @katemn, Sep 30, 2014

David I am out of the country so limited wifi .. return to USA October 7 ..could you write me then when I have better access?
Best regards,
Katherine
Friday, 26 September 2014, 11:36PM -03:00 from Mayo Clinic Connect :


david
@dt14145

Posts: 5
Joined: Sep 27, 2014
Posted by @dt14145, Sep 30, 2014

okay, I\’ll contact you again when you get back. David


Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011
Posted by @katemn, Oct 1, 2014

Thanks David .. I\’m happy to help .. just as others have helped me!
Katherine
Tuesday, 30 September 2014, 10:40AM -03:00 from Mayo Clinic Connect :


DWH
@dwh

Posts: 3
Joined: May 25, 2012
Posted by @dwh, May 25, 2012

I am gasping for breath with any exertion: showering, walking, especially up stairs, and sometimes I get out of breath just from talking for more than a couple minutes. I am 49 and have been gradually getting worse for last 3 years. My throat sometimes feels constricted and gets sore when I talk at length. Never smoked. Haven’t been out of the country. I’ve had numerous tests, all normal: heart cath, lung scans, allergy tests, neurological, MRI, thyroid, endoscopy, chest x-rays, diaphragm radiology, and countless blood tests. I’ve had 2nd and 3rd opinions on many of these. Still no answers. I can’t work full-time, and some days not at all.


Katherine, Volunteer Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011
Posted by @katemn, Aug 16, 2015

Can’t hurt to request a sputum test .. that was how I was diagnosed with Mycobacterium Avium-Intracellulare (MAI) Infection. I had never smoked either.


pal131
@pal131

Posts: 3
Joined: Sep 12, 2013
Posted by @pal131, Sep 12, 2013

I have been diagnosed with MAC and also brochiectusis from a pulmonologist at Mayo Clinic in Jacksonville FL after going to several internal medical Drs. who really never mentioned either of these diseases. They always did a chest xray and usually gave me a prescription for some type of antibiotics. When that didn’t work they would try another one.
Dr. Leventhal said that it can only be seen with a CT scan and that it usually only affects thin white women.
MAC stands for mycobacterium avian, he indicated that it was spread through bird droppings that filtrate into the ground then into our water supply.
I have many of the symtoms others on this blog have explained. I usually feel quite well but get spirts of feeling rundown, no energy. After talking in a loud restaurant my voice is completely gone because of exertion. I also get sick when I travel, I assume because of the stress and change of my regular scedule.
I am very interested in this blog and comments from others suffering with these.

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