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.
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.
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!
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.
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.
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
Hi, I was only able to take the cocktail for MAC for 9 to 10 mos. and suffered with GI and skin problems too severe so we had to stop. My vision was not affected however, my hearing was and though I've been off the meds for two years now, my hearing did not improve. It seems the time I spent on these antibiotics helped a great bit. I am due for a CT in a month or two and we'll see then how things look for me. I belong to a Mac group on FB that is private. We have nearly 90 members if you are interested. It is a Mac lung disease group and you could request to join if so interested. Nice bunch of folks on there. Good luck to you, John. 🙂
Carole, I would suggest that you go back and read all the posts from the beginning. I know I have learned a lot from this group. Perhaps you could also .. and find support. Stick with this thing. I have been negative since May 2013 .. and my Doctor at Mayo Clinic has me come back for a check up every 6 months to make sure I stay negative .. OR he catches it quickly if the MAI/MAC comes back.
I know I have never forgotten a story I read years ago in my 20's about a woman who ended up going to 17 doctors before she got an accurate diagnosis of her symptoms. That stuck with me in raising my children and regarding my own health. You know your own body. Trust your inner wisdom and do what you feel is best for your body! Sending you LOTS of positive energy and support! Katherine