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New to MAC: Anyone have success stories to share?
New member.
61 yo. Been healthy all my life. Gym doing resistant training. Spinning 3 times per week. Life was good. Then in December went for a CT calcium score. The good was no calcium in my arteries but the bad was a finding of a nodule in my right middle lobe. Now, after cultures, more CT scans and Bronchoscopy I am diagnosed with MAC. I am beginning to feel some occasional chest pressure and palpitations. Have seen ID and the 3 drugs were discussed. I have not been able to even search anything on the web for it terrifies me and creates anxiety. It’s been since December and I am just now able to do some research and found this site. I have not started the meds yet. Help. Does anyone have any success stories. I want this behind me. My doctor says if I can get through 18 months on the meds it should be out of my body.
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Welcome to the group. I'm sorry you need to be here, but I think you'll find it a very helpful and supportive group. I'll ask you a few questions that will guide others in their answers.
I think you'll find many here managing the disease successfully.
Are your doctors well versed in treating MAC? It's uncommon and some docs treat few cases.
Do you also have mention of bronchiectasis on your CT's?
Are you doing any airway clearance? It's very helpful in managing it.
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1 ReactionTo help you, in this new diagnosis and journey, it might be helpful to explain the symptoms you have been having that would be, often, associated with Bronchiectasis?
Barbara
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1 ReactionHi Shelly -
Welcome to the group. While it may not be the club you would have opted to join, you are in very good company here with very caring and knowledgeable people who are very willing to share their journeys. Making sure your doctor is very well-versed in treating bronchiectasis and NTM is critical. Also, as NTM is a slow-growing bacteria, you have time to get a second opinion and learn more before jumping into treatment. Not everyone has to take antibiotics, but manage to stay stable and even improve with regular airway clearance and lifestyle changes to avoid additional exposure to MAC.
Also the anxiety is normal. I remember being absolutely terrified when I was diagnosed, and while I still suffer from anxiety, it is so much more manageable now. This part does get better with more info.
Read through as many of the conversation threads on this website as you can. It is so helpful!
One day at a time...
Jill
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3 ReactionsHi Shelly-
MAC can either be SLOW growing or RAPID growing. It depends on which Mycobacterium your sputum tests demonstrate on the lab Petri dishes. I began with Mycobacteria simiae in January 2013. It is a slow grower. I had no physical symptoms; however a chest X-Ray and plus a followup CT Scan at Brooke Army Medical Center in San Antonio showed Tree in Bud opacities in my Right Lower Lobe (RLL). Sputum tests were ordered and sent to Univ of Texas at Tyler East TX medical center lab. I tested out Simiae. It is a slow grower. I chose to do breathing treatments at home with a nebulizer and to use my Aerobika rather than start three medications. In October 2022 , I tested positive for Mycobacteria Abscessus Maisssiliense a rapid growing Gram positive bacilli.
I don't know where you live; but I would try to be seen at one of the top NTM clinics in the US. I go the UT Tyler East Texas Pulmonary Clinic. My Infectious Disease MD is at the Audie Murphy Medical Center in San Antonio. She (Dr. Horvath) stated to my husband and me that I won't die from the disease, but a serious pulmonary disease (flu, COVID, Pneumonia, RSV) could combine with the pre-existing condition to cause critical respiratory issues. Good Luck.
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2 ReactionsThank you so much for your reply. I am being followed by a Pulmonologist and Infectious disease. Had 2nd opinion from another ID. No one has mentioned Bronchiectasis. I do have the tree in bud nodule. I have a flutter valve and incentive spirometer. I want to learn more about the airway clearance and have already started reading these posts. Many thanks to you!
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1 ReactionThank you Jill for your encouraging words. I am so thankful
I found this group. My life has turned completely upside down in the last 6 months going through all these test to finally get this diagnosis. Many many tough days and tears trying to cope with this. I am now ready to start learning more and so so glad to have found this support. Exactly what I needed. 🙏🏻
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1 Reaction@shelly61 As you make your way through the the various discussions here, I wanted to send you a link to one particular discussion thread that is chock full of important information.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/?pg=1#chv4-comment-stream-header
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3 ReactionsMany thanks! I will check this out. Appreciate you!
Airway clearance: Dr Pamela McShane who is now at the NIH, after being at UT East Texas at Tyler Pulmonary Clinic, has an excellent video on YouTube about airway clearance.
Thank you so much! I will search.