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
I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene
I am a 79 year old retired psychiatrist. I was diagnosed with MAC in 4/15 as part of the workup post pulmonary hemorrhage. I had already lost 35# from my baseline 170#. I was started on the Rifampin, Azithromycin, and Ethambutol. After a few weeks, my appetite and energy were worse. I was continuing to loose weight. I called my doc pointing out that he wanted me to gain weight, and I was so nauseated I couldn't eat. He advised me to stop the Rifampin and call him back if 5 days. Voila!!! The nausea was almost gone, and I started to eat more. I am now back to my baseline of 170#. My sputum cultures tuned negative in 2/16, so I am scheduled to stop the meds in March of 17. Please reconsider your plans. Talk to your docs about a different medication plan I think that I would have ended up like you if my doc had not been willing to try stopping the Rifampin. My wife, a retired nurse, also credits starting a Pobiotic with improving my appetite. From my 79.5 year perspective, you are still young. Your death will matter to those people who are important to you.
Thank you. I have an appointment in Nashville in a month to revisit the "plan" as the MAC is in both lungs now. And yes, I have a wonderfully huge, loving, and devoted family who are my heart. I am so glad for your improvement.
If I were involved in your treatment, I would consider this an EMERGENCY! and demand an earlier appointment. For the sake of your family, be your own patient advocate and demand an Urgent appointment. They already know the diagnoses and the initial treatment plan. 'Go get em'!