mycobacteria

Posted by loyd1230 @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.

Liked by Anguyen, Cassiemarie

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.

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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!

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@loohoo78

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.

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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…….

Liked by gina1645

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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.

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@katemn

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!

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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?

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@loohoo78

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.

Jump to this post

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.

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@katemn

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!

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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.

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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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@katemn

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!

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

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@katemn

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!

Jump to this post

any info on mac night sweats. david

REPLY
@katemn

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!

Jump to this post

how do i connect to people with mac. david

REPLY
@katemn

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!

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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 :

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@katemn

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!

Jump to this post

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

REPLY
@katemn

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!

Jump to this post

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 :

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Has anyone had vision problems associated with ethambutol? I am 3 months on the drug, 1200 mg/d, 17 mg/Kilo, and I have required 2 corrections for my glasses, and will soon need another. Thanks

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