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Just Diagnosed with MAC
I was just diagnosed with a MAC infection. I was a smoker for 45 years. I quite 4 months ago. My primary care sent me for a lung cancer screening a couple of months ago which showed 4 nodules. She then sent me to a pulmonologist. From there a PET scan and bronchoscopy. My only symptoms are shortness of breath (when walking up the hills in my neighborhood), tired all the time, and a dry cough. I do not produce any sputum. Anyway, my pulmonologist is referring me to an infectious disease doc. I am really terrified to take the 3 antibiotics as I have a history of Cdiff caused by taking antibiotics for diverticulitis. I have since had to have a fecal transplant for that. I guess all I can do is load up on the Florastor and other probitiocs and hope for the best. I am glad I found this support group. I am just feeling really scared right now.
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@ldepauw715 Hello and welcome to Mayo Connect and to the MAC support group. All of us feel scared and overwhelmed by our diagnosis at first, especially if we use "Dr. Google" to try to learn about an infection we probably never heard of before. In your case, with a bad history with long-term antibiotics, you have even more reason to be concerned.
But, antibiotic treatment is not an absolute for people with a MAC infection. Depending on severity, and their other health conditions, some people elect to take a "watch and wait" approach. This does not mean you do nothing - it means to undertake a period of healthy living and a routine of daily airway clearance, where you use a saline in a nebulizer to add moisture to the lungs, then practice a number of breathing techniques to try to move the mucus and infectious material out of your lungs.
You mentioned being a long-time smoker. Have you also been diagnosed with COPD, emphysema, asthma, chronic bronchitis or bronchiectasis? If so, you need a pulmonologist experienced in treating your specific condition. Especially bronchiectasis and MAC are very rare, and if the doctors are not familiar with the latest protocols, they tend to jump straight to the standard antibiotics. Did you bring up your bad history with antibiotics to the pulmonologist?
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2 ReactionsHi Sue,
Thank you for your reply. My pulmonologist has not said anything about bronchiectasis or emphysema, but do get bronchitis a lot. He did say that antibiotics might not be needed right now, but is still referring me to an infectious disease doctor. The symptoms are not too bad. I have 4 lung nodules, 2 with cavitation. I will be going for a lung function test next month. I quit smoking 4 months ago and my CT scan was 3 months ago, followed by a PET Scan, then a bronchoscopy last month. I am going for another CT scan in 3 weeks to see if there are any changes in the nodules.
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2 ReactionsI too was diagnosed with MAC a few weeks ago. Last year it was determined I have a form of Cystic Fibrosis and bronchiectasis. This was all new after having shortness of breath, and reduced stamina lots of tests and finally a bronchoscopy. I have been on a single inhaled antibiotic for pseudomonas since the bronchoscopy, along with saline and inhaled meds for the CF. I too have history with CDiff (2x). The "Big 3" my doctor told me about, are also additionally terrifying to me for that reason. Even with all my lung stuff going on, I am actually feeling good these days, so adding this cocktail of meds is something I will not jump into. I'm trying to keep healthy and positive and take a "watch and wait" for now. I am 61yrs old. I have follow up CT, PFT and blood work within the next month. Anyone out there have any experience with mullein as a natural helper for lung health? I have a supportive, pulmonary specialist at UCSF, but it's helpful to know I am not in this alone. Thanks in advance.
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1 ReactionEven after catching C.Diff caring for my grandmother on hospice, I begged until I finally got bronched! I’ve been sick for 8 mos & lost 90 lbs. I will be dead if they don’t start treating me soon. A Z-pak, Sambucol I could get at CVS & Nebs. For TB? Really? It has been around longer than I’ve been alive. These are all drug resistant by now! Why are you letting me die?
I was just diagnosed with mycobacteria absessus. Going to see infectious disease doctor Friday. No symptoms yet. Very scary diagnosis .
@sueinmn
I have mycobacteria absessus. Since this is so rare please give me the name of best place for treatment based on specialty.
@vickihhh There is no one "best place" unless you are talking about going to National Jewish Hospital (NJH) in Denver for a workup and treatment plan. You will still need a local pulmonologist, and possibly an infectious disease (ID) doctor to manage your day-to-day treatment. That depends on where you live, and what insurance you have. Here is a list of the Bronchiectasis Centers that have expertise in treating us:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
If there is not one listed near you, you can begin by searching major medical networks in your area for pulmonologists, and read each bio - they will list bronchiectasis or infections if they regularly treat them.
Do you have a good pulmonologist now? How was your infection discovered?