Hi Katherine
I'm also at Mayo at Rochester. I live in Minneapolis.

I see Megan Dulohery who is a MAC doc who works with Aksimet. I was finally diagnosed after a scope and lavage which showed MAC. Had pneumonia in Dec 2016 and my CT had a persistent cavity in my upper right lung.
Plan is I start the 3 drugs frequently given and CT scan and sputum in October. I should have the meds to start next week. I'm concerned about my kidneys as I take 4 blood pressure meds, but have no choice but to do what Mayo says.

Where in your lungs is your Mac? Any discussion of surgery? It seems that really ends it for those who have removal. I may be a candidate. It moves slow? I hear cavities are more aggressive, I have one in upper right as I said. Worrisome.

I'm trying to be positive but I have my moments. Lots to track with eye and hearing exams and frequent blood work. I'm overwhelmed but trying to get organized with when I have to do what.

It sounds like you are doing pretty well with this crazy disease and that gives me hope.

Any suggestions on things to do to tolerate drugs? Are you in the Minneapolis support group? I think meeting with others might help me. I feel isolated with thus weird disease and seeing others would help.

Thanks for your good posts. I'm giving it my all. Feed back appreciated!!

Peace

Kay

Welcome Kay, so glad you found our Forum! In terms of my own lungs .. since I was diagnosed in 2007 .. my reports say "mild scarring both lungs" which show up any time I have an Xray or Ct scan. Absolutely NO has there every been any mention of surgery! You are in good hands at Mayo Clinic! Just do as you are instructed .. just as I did .. and you will come out just fine!

Kay, this is just me .. but my advise to you is read through ALL the past posts/pages. From these you will receive a LOT of good information and help. We are all individual in terms of what may work for us .. you will find REALLY good ideas on taking the meds. For sure watch for info on probiotics .. they are important .. lots of good info here on that. Good info on when and how to best try things and getting organized.

PLEASE do keep coming back to this Forum .. you will NOT feel isolated if you do so because we are ALL on this journey together .. and we share it together! For me PERSONALLY .. and it is only ME .. I found the local "support" group not a positive experience. For me .. MAI/MAC is only a piece of who I am .. it does NOT define who I am .. and in that particular group I felt it had become their identity. MAC/MAI is NOT my identity. Sorry but that was just my perception.

But Kay, I promise you .. if you keep coming back to OUR Forum .. you will be a part of all our journeys .. and you will NOT feel isolated! Sending you a Big Hug! Katherine

I am new to this forum, and I am researching treatments for my husband. He has severe COPD and was diagnosed in December 2015 with MAC. He was taking ethambutol, rifabutin and azithromycin from December until the end of June and was doing pretty well. We were in Florida at the time and drove to NJ at the end of June. Two weeks later his condition worsened and he was diagnosed with mycobacterium abcessus. He has been on IV amikacin 500 mg every 12 hours and imipenem/cilastatin 1000 mg every 6 hours, and azithromycin 500 mg daily for seven weeks, one more week of IV to go. The infectious disease Doctor said he will continue the azithromycin and will add Bactrim when the IV ends next week. We will be returning to Florida, hopefully in three weeks. We live about 30 miles north of Palm Beach. We like his pulmonary Doctor, but he doesn't have a lot of experience with this type of infection. We are considering consulting with doctors at Mayo Clinic in Jacksonville, FL or at Cleveland Clinic in West Palm or in Westin, Fl. Can anyone recommend a doctor? It would be wonderful to have a doctor we feel confident in. We have yet to find someone. ( Prior to the MAC diagnosis, he had been seeing a pulmonologist at Univ. of Pennsylvania. CT scans showed some nodules that were increasing in size over time. He felt that bronchoscopy was too risky due to the condition of my husband's lungs, but referred us to a radiation oncologist at Penn. My husband had radiation for "presumed malignant neoplasm" in his right lung in November 2014. We saw the pulmonologist and the oncologist again a year later and CT scans showed some new nodules. They said it was cancer, never suggested doing sputum cultures, even though we said my husband seemed to have an infection with increased mucus and cough. We went to Florida, and a few weeks later he was diagnosed with MAC! ). As you said, Kathryn , it's important to do your homework. I wish we had gotten a second, or third opinion before my husband underwent radiation on his already damaged lungs.

Welcome Diane.
On this webpage http://mayocl.in/1mtmR63 you'll find the contact numbers for all 3 Mayo Clinic campuses, including Jacksonville Florida. If you call, they can guide you further about MAC experts available for consult. You can read more about Pulmonary Medicine in Florida here http://mayocl.in/2dsqeeM As several members have mentioned on Connect, the physicians at Mayo Clinic work together. In fact the pulmonary medicine physicians routinely consult with colleagues in Cardiothoracic Surgery, Cardiovascular Diseases, Hematology/Oncology, Infectious Diseases and Rheumatology to ensure all aspects of a patient's problem are evaluated.

It is important to do your homework as you say. There are a couple of members here who also live in Florida and can share their recommendations. @boomerexpert @Paula_MAC2007?

Thank you Colleen. I contacted mayo clinic in Jacksonville but was told they are not taking any more Medicare patients for at least a year. I am so disappointed! I am so desperate to find a good doctor for my husband.

Diane, if I was sitting in your shoes here is what I'd do. I takes work .. but I've done it for my husband .. and I'll bet you will do it for yours!

1. I would google "Infectious Disease Doctors" and then "Pulmonologists" within reasonable driving distance from your home or whatever you are willing to fly to.

2. Google the name of each. Check into each bio.
a. Check to see if MAC/MAI is ANYWHERE in their area of interest .. papers they have written .. ANYWHERE in their bio
b. Look to see where they went to school. I feel the tougher the school they went to .. the brighter they probably are.

3. If you find more than one
a. call and ask: How many MAC patients has the doctor treated in the past 12 months
b. explain your husband's situation and try to get him in ASAP

I hope the above helps just a little bit. Don't give up. I am a great "googler" .. It takes time but it is amazing what you can find on bios by going from link to link. Sending you a hug in this tough time! Katherine

Thank you Katherine. I will get to work on this!

Good for you Diane! Just develop your plan .. and work that plan! You go girl! Good Luck! Hugs! Katherine

Was given the news of having the mycobacterium abcessus at the end of nov. Totally sent me on an crazy feeling i have an infectious disease doctor. Imipenem and amikacin for 2 months . Now on claritromyc, ciprofloxacn anddoxy-cycline 2 times a day. This has been trying but i am feeling better. According to our control disease center they did not know how to treat this disease. Just had another CT scan and do not see the dr for about 2 weeks. Not fond of going out anymore.

Dear @patw,(do you have a first name) I am going to answer you despite the fact I have been lying low .. my wonderful members have been taking up the slack answering VERY well!

I am taking the time to answer you because getting a diagnosis of mycobacterium abscessus is not that common .. but we share that. I also did. BUT I came out on the other side and you will also! BUT it bugs me to have you be told 'According to our control disease center they did not know how to treat this disease.' Well, THEY are VERY misinformed .. or poorly educated .. OR just don't want to make the effort!!

You can tell them that My doctor, Dr.. Timothy Aksamit at Mayo Clinic, Rochester Minnesota CERTAINLY did know how to treat this disease when I was diagnosed in 2007!! He certainly did NOT whine and say he didn't know what to do! Here is what I was prescribed .. YOUR situation may be different .. I am jus saying this is what I did:

per day: Azithromycin 250mg ..Avelox 400mg ..2-Rifampin 300mg .. Amikacin 2ml-inhaled 5x week Ethambutol 800mg

One important question I would be asking you Infectious Disease doctor: How many MAC patients have you treated in the past 12 months? THIS will tell you just how knowledgeable this person is about our shared disease! You want someone who KNOWS!!

@patw, I really glad you found us .. you will find a really supportive community of people .. I would encourage you to read the pages of the main Forum to educate yourself to our shared disease ..then to post any questions you might have .. we have really nice people here. I just jumped in because not many people share the mycobacterium abscessus .. it is more difficult to treat. Hugs to you in this tough time. Katherine

Check out: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=25