I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I 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!
I wrote on the 1 thread I found: 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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!
If you have the “MS Word” program on your computer:
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal “file cabinet” on MAC/MAI! Go to it!
KateMN
@auntnanny Jan, it takes ongoing antibiotic therapy and 2x day nebulized saline to fight the pseudo good and gone. You cannot just treat it for a month or two.
@america, and @sueinmn I attended the World NTM conference in D.C. a few years ago. While there, I learned there are some geographic differences for mac. There are definite 'hot-spots' for MAC in this country. Some states have a far greater incidence of it than others. Unfortunately, Florida is one of them, coming in second to Wisconsin. California, Arizona, New Hampshire, & Hawaii. I got mine when I lived in Arizona. I have been mentoring this site for several years now, and I can tell you; the majority of the folks on here with mac live in Wis and Fl. Yes, mac is everywhere, but it is in higher doses in some regions.
Liked by america
@boomerexpert I think the world of @america's doctor, as he is also my doctor. I can tell you this, Mayo Clinic only hires the very best medical personnel. They are usually the cream of the crop.
@sounder27
Pseudomonas comes with the Bronchectasis territory. It shows up in a sputum usually within three days. Its treated with cipro leviquin or tobramyacin usually. They usually do a susceptibility test to see which antibiotic works best.
Shari
Liked by Terri Martin, Volunteer Mentor
Terri, I admire your tenacity and bravery. I’m trying to work up the courage to make a move – thank you for the encouragement
Liked by Terri Martin, Volunteer Mentor
Have you tried a Neil Med sinus rinse bottle with the saline solution (kit comes in a box at any drug store) Natural, Easy, inexpensive and with regular use works better for nasal drip and even sinus infections than ANY drug I’ve ever been on-(had chronic sinusitis ) prescribed to me at National Jewish Health in Denver. Hint – if you warm it just a tad it is not at all uncomfortable. Also ask your Dr about using an Aerobika with your nebulizer – like getting a 2 for one deal. Works wonders for helping to clear lungs when you have bronchiectasis.
@windwalker From the list of MAC hot spots, we probably can deduce that heat and humidity are not the determining factor for the existence of MAC, as these states have varying climates. Some hot but not humid, some hot and humid, some have cold and damp winters some do not. Wisconsin may get humid in the southern portion of the state in summer, but its winter is cold and dry. So far, I have not been able to find any source that would explain to me why there is concentration of MAC in some places around the country. I guess if people decide to move, stay away from the MAC hot spots is a safer way to go, although one's physical condition being another determining factor may or may not allow them to completely escape the possibility of being infected by MAC.
Liked by Terri Martin, Volunteer Mentor
I do too and he doing what he thinks will work best for me. I have became very weak and I don’t eat well. He’s caring and listens to me. I see him in two months to be tested again.
Liked by Terri Martin, Volunteer Mentor
@ling123 True. I was trying to figure why some places are hot spots. I know that the southern region of Wis is the hottest hot-spot in that state and the source for water supply is from an open reservoir. Not sure about other municipalities in the other states. I don't think anybody has figured this out. I am beginning to think our food with all of its chemicals and crap is making our bodies broken. ?????? !!!!
@windwalker Whatever the reason, I probably won't move unless my husband agrees to move to Colorado with me (not to run away from MAC for for the love of the mountains). So my goal is to try my very best to stay healthy. The rest is out of my hands. Thankfully, I have not had problems with my lungs for the past 4+ years. Fingers crossed I can keep MAC away for as long as possible, hopefully forever.
Liked by Terri Martin, Volunteer Mentor
@windwalker @ling123 …I just read today that FL is the highest MAC state. I wonder if it is because FL is a retirement destination and MAC is typically an older women's disease. Are we "importing" the MAC cases here in FL or "manufacturing" them? Hard to figure…but I would not consider moving unless my case got really bad. Terri..I agree with your thought about diet…food certainly impacts our health and makes us able to either fight off or succumb to diseases.
Liked by Terri Martin, Volunteer Mentor, ling123
@alleycatkate This MAC thing is a total mystery to me. I've done as much reading on it as I can stomach. If the doctors can't even be on the same page with the cause and treatment plans, I figure I will just concentrate on doing what I can do and let the rest lie where it may. I totally agree with you about diet. One big component is sugar. We've got to cut as much sugar from our diet as we can manage. Not just sugar as what's in desert, but carbohydrate. If I need to eat it, I go for whole grains, such as whole wheat and brown rice, keeping the white stuff to a minimum. Just so happens I'm cursed with family history of diabetes. I don't have it yet. But that is the biggest motivation for me to cut down on sugar and carbs. The fear of getting diabetes is strong enough to keep myself inline. And I feel pretty good so far.
Liked by heathert, Jennifer, Terri Martin, Volunteer Mentor, alleycatkate ... see all
@windwalker
@sounder, Do you see how I started this sentence with your @ name? That is how you direct responses to specific people.