Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for - As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
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
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3570
Joined: Nov 18, 2016
@auntnanny sounder27 I believe it's a serious bacteria….. I have it in lungs and in sinus cavaties. I recently had sinus surgery because doctors thought perhaps I was getting excessive drainage into lungs. They cultured a sample from sinus and then asked me to use powdered Levaquin in a sinus wash twice daily for two weeks. I did that. I don't know if it got rid of the pro blem but I doubt it. I know that is the main bacteria in my lungs at this time. Apparently it's hard to get rid of. I've had other bacterias throughout the last few years but the pseudomonas has been the hardest for me. Don't know if this helps you at all but I'm sure there are many on here who can share more information.
@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.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3570
Joined: Nov 18, 2016
@america Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being closer would help but for now I’ll do what I need to. This disease is lot more complicated than I thought.. this group has helped me in many many ways. But it’s scary having one vocal cord, Sjogrens, RA, restless leg syndrome and so much pain daily. I do get discouraged from time to time. I am thinking about moving because in the Tampa area I think it’s infested with Mac. I would love any thoughts on this. Thanks again Rita.
@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
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3570
Joined: Nov 18, 2016
@boomerexpert @america do you trust your docs implicitly?
@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.
pfists
@pfists
@pfists
Posts: 177
Joined: Dec 27, 2016
@sounder27 Thank you. I have excessive post nasal drip and both Mac and bronchiectasis. I have had serious pneumonia in the past for which I was hospitalized for over a week. I constantly cough and choke on mucus but my pulmonary doc has not said anything about pseudomonas infection. I also have sneezing fits. That is why I was wondering about it.
@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
lainey
@lainey
@lainey
Posts: 16
Joined: Feb 05, 2016
@windwalker @catherine123456, and @lainey, I have moved from two locations that I found myself always extremely sick. I left Virginia because I always got pneumonia and mac there. I left Tucson Az because I got mac there too (Az is a known hot-bed for mac.) plus I had difficulty with the altitude. My oxygen levels increased by 6 by moving to sea level. I think Virginia was too humid in the summer and too damp and cold in the winter. After it rains there, the dampness just stays and makes for a lot of molding rotting leaves. In other words, lots of fungals. I now live near the ocean in S.C. Rainwater drains away quickly in the sandy soil so it doesn't feel damp. It does get humid here in the summer, but it is a short duration compared to many states. I have never felt better as far as having clear lungs and negative test results for mac & pseudomonas since I moved here. Moving here was the best thing I could have done for myself. I am still short of breath and energy though, but at least not coughing any longer.
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
lainey
@lainey
@lainey
Posts: 16
Joined: Feb 05, 2016
@sounder27 Thank you. I have excessive post nasal drip and both Mac and bronchiectasis. I have had serious pneumonia in the past for which I was hospitalized for over a week. I constantly cough and choke on mucus but my pulmonary doc has not said anything about pseudomonas infection. I also have sneezing fits. That is why I was wondering about it.
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.
ling123
@ling123
@ling123
Posts: 341
Joined: Apr 06, 2017
@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
america
@america
@america
Posts: 129
Joined: Jun 26, 2018
@windwalker @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.
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
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3570
Joined: Nov 18, 2016
@ling123 @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.
@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. ?????? !!!!
REPLY
@windwalker @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. ?????? !!!!
And the problem is the antibitics do t cure it its only temporary fix and it mess up other things so how do u get rid of it
ling123
@ling123
@ling123
Posts: 341
Joined: Apr 06, 2017
@windwalker @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
alleycatkate
@alleycatkate
@alleycatkate
Posts: 212
Joined: Mar 12, 2018
@windwalker @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 @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
america
@america
@america
Posts: 129
Joined: Jun 26, 2018
ling123
@ling123
@ling123
Posts: 341
Joined: Apr 06, 2017
@alleycatkate @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.
@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
In reply to @sounder27
@sounder, Do you see how I started this sentence with your @ name? That is how you direct responses to specific people.