(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

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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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Paula_MAC-2007 | @Paula_MAC2007 | Dec 14, 2016

In reply to @Paula_MAC2007 "I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that..." + (show)

Hello @windwalker,
I'm replying to your two questions from 4 days ago ... sorry for the delay in answering.
(1) Am I a Mayo Clinic patient? No, I live in SE Wisconsin and have been treated at Froedtert Hospital which is affiliated with the Medical College of Wisconsin. . . they're very knowledgeable about NTM/MAC. Are located 90 miles north of Chicago and yet SE Wisconsin is a hotbed for MAC, and not Chicago. Go figure!
(2) Was that lavage treatment a 'whole lung lavage' where they actually run liters of saline through your lungs? Yes, that's what they did and then suction out the fluid and analyze the results. That way, they get cells from throughout all areas of your lungs. Totally painless.
Paula

Katherine, Alumni Mentor | @katemn | Dec 15, 2016

Hi Katherine,
I was diagnosed with MAC and bronchiectosis in July of 2015. CT scan showed a lot of scar tissue, several nodules, etc. In Oct. 2001, I went to a funeral for a cousin in Roanoke Va . The wind was blowing very hard. A week later, I went to a clinic and talked with a P.A., with severe coughing, fever, etc. She refused to give me antibiotics because the xray did not show that I had pneumonia. (I have had walking pneumonia before several times and I know what it feels like.) I went home feeling like crap. Ten days later, I was in a doctor's office diagnosed with double pneumonia! I was given Levaquin and seemed to get some better, however, I continued to have bouts with bronchitis.

I went to a pulmonologist who gave me a TB test and I was told by the nurse that it was negative although I noticed redness and a raised spot. I have not been tested for TB since then. I did learn that a TB diagnosis is just as good as the person reading the test. In 2010, I was in an internship in a school where many students got sick, me included. I was sick for 5 days with severe bronchitis / pneumonia. After 2010, I had bronchitis every year, sometimes 2-3 times or more in a year.

2015, I got sick! I went to a pulmonologist and after a CT scan and sputum test diagnosed me with "Bronchiectisis and MAC"! I was first put on Clarithromycin, Ethambutol, and Moxafloxicin. It was all I could do to drag myself from the couch to my bed, lying for 18 or more hours a day. I started putting on weight, gaining 25 pounds. I was put on oxygen, 3 ml and my spirometry was bad. I gave up my business due to low or no energy. The moxaflaoxcin gave me severe diarrhea. My next sputum test showed Candida Albicans which no doctor has addressed. I felt as though I had to take my own life in my hands and get tough on doctors! Candida Albicans which was never been addressed with a solution or drug, has been undermined by the allopathic (MD's) community.

After years of suffering, nausea, gagging or puking up phlegm, I decided I would take care of myself. I take herbs along with the antibiotics. There has been no contraindications, and I have been doing well lately. Everywhere I go, people who know me, tells me that my complexion is good, my spirit is good, and I am off OXYGEN! I was told that once on oxygen, I would always be on oxygen. How did I get off oxygen? I learned to breathe! All you have to do is watch a baby breathe. When a baby breathes , his chest is moving upward. When he/she exhales, his/her chest moves in a downward motion. Learning to breathe helped me very much! Another way I have helped myself is blowing up balloons. Yes, blowing up balloons. I blow up balloons, 2 a day. I blow them up 10 breaths, 2x a day.

What did I learn from my episode? Not to trust nurse practitioners, physician's assistants, etc. They are not doctors and they should not be giving medical advice. If you cannot see a DOCTOR, request one, and refuse to see anyone else. I blame a nurse practitioner for not recognizing my case, and blame all the physician assistants for "diagnoses" that only a medical doctor is qualified to make! I went for 15 years with a misdiagnosis. I took my life into my hands at the age of 70, and I am fighting to live"!

Dear @cuchicuchi, welcome to our Forum, I am so glad you found us! Do you have a first name .. makes it so much more personal. WOW! What a tough time you have had. Unbelievable! But you are ONE SMART COOKIE! I hope you don't get mad at me .. you sent me the above with a private message .. BUT it is absolutely one of the best messages I've ever received with some REALLY good information for the other members of our Forum. I would feel like a "bad" person if I didn't share all your wise knowledge with others struggling on our shared journey! Especially your WONDERFUL "balloon" discovery! What a great ideas! As I said .. you are one smart and tough cookie! I am so glad and proud you took the time to share your wisdom with us! Thank you .. and I hope you don't mind that I have posted your thoughts. Please come back and continue to share? My bet is that others might be interested in your herbal remedies to help nausea. Personally I see a homeopathic person .. truly believe in blending East and West medicine! Blessings to you and sending you a Big Hug! Katherine

Terri Martin, Volunteer Mentor | @windwalker | Dec 15, 2016

In reply to @katemn "Kay, the coughing and clearing absolutely does NOT get rid of MAC. The purpose is that..." + (show)

Great advice!

Terri Martin, Volunteer Mentor | @windwalker | Dec 15, 2016

In reply to @maryjo2sell "Hello. My name is Mary Jo. I am new to the forum. I only discovered you..." + (show)

Hi Maryjo. I have MAC w/bronchiectstasis. I see a pulmonologist at the Mayo Clinic in Jacksonville. His Name is Dr. Jack Leventhal. This man has saved my life I am sure. I was put on alternating monthly antibiotics for three yrs. that worked for awhile. Now I am on alternating months of an additional antibiotic called tobramycin. It is super expensive but it has totally dried up the infection. It is what they commonly give to CF patients to help keep the myco-organisms at bay. If this is the closest Mayo clinic to you, I highly recommend you get yourself there. Best of luck to you!

Terri Martin, Volunteer Mentor | @windwalker | Dec 15, 2016

In reply to @katemn "@windwalker Hi terri! I have LOTS of notes .. and just found: Also, if you are..." + (show)

Hi Katherine. I think you misunderstood my Alpha-1 diagnosis. I am only a 'carrier' of this gene. They do not know why, but for some reason it is common for carriers to get lung disease too; even though they supposedly have enough protective protein levels. I am very familiar with the sites for Alpha-!, have read up on it for years. Need to to re-visit though in case new info has surfaced. I appreciate you looking into to though. Hope you are doing well.

Katherine, Alumni Mentor | @katemn | Dec 15, 2016

In reply to @katemn "Kay, the coughing and clearing absolutely does NOT get rid of MAC. The purpose is that..." + (show)

Kay, I have thought further about your question on " If you are free of MAC what is all the mucous you have to clear caused by? " .. and decided to go back on my copious notes acquired as I tried to learn about my diseases .. hmm .. what I have discovered is that I have forgotten more than I have remembered!! Darn . . age is creeping up on me. I found in my notes a wonderful explanation .. BECAUSE I have not only MAC but also Bronchiectasis .. the explanation is the Bronchiectasis .. the explanation is as follows:

Bronchiectasis is chronic dilatation of the breathing tubes causing secondary infection usually in the lower portion of the lungs. Bronchiectasis is considered to be incurable permanent damage to the affected areas of the lungs.
In bronchiectasis, mucus production increases, the cilia (small hairs similar to brushes that line the breathing tubes) are destroyed or damaged, and areas of the bronchial wall become chronically inflamed and are destroyed. It is associated with excessive mucous production that results in coughing and small to copious amounts of sputum. The excess mucous is produced and the lungs of patients with bronchiectasis do not adequately clear airways via the cilia. In healthy bronchial tubes the cilia beat back and forth, moving the thin liquid layer of mucus that normally coats the airways. Harmful particles and bacteria trapped in this mucus layer are moved up to the throat and coughed out or swallowed. In bronchiectasis the mucous builds up and causes stagnated sputum that invites infections.
Bronchiectasis is associated with the development of chronic infection of bacteria known as Staphylococcus aureus (S. aureus), Pseudomonas aeruginosa (P. aeruginosa), as well as MAC and Mycobacterium abscessus..

Kay, hope this is a better answer! Hugs! Katherine

Katherine, Alumni Mentor | @katemn | Dec 15, 2016

In reply to @katemn "@windwalker Hi terri! I have LOTS of notes .. and just found: Also, if you are..." + (show)

Thanks Windwalker,, I thought the whole thing was interesting . that with Alpha-1 gene I was more susceptible to lung issues .. but my report said only if I was a smoker which I found interesting since I was NEVER a smoker and STILL got MAC! Go figure. I think there is a whole lot we do not understand about genes AND our bodies! Oh well .. we deal with what we are handed with a smile and good cheer .. right?! Hugs! Katherine

Terri Martin, Volunteer Mentor | @windwalker | Dec 15, 2016

In reply to @nelisabeth "I don't know if i am posting correctly! here goes. I am 76 year ol lady!..." + (show)

@nelisabeth

I don't know if i am posting correctly! here goes. I am 76 year ol lady! Was hospitalized last Oct .... x-ray showed NADA. i do have COPD. For five days was treated with MASSIVE steroids. Hospitalist ordered CT/contrast ...... sent me home on the Fri. after test saying it showed nothing and i was not getting welll there. So .... was sent home with MORE steroids. Could NOT function. AT follow up with MY N.P., she said the Ct showed
both lungs had pneumonia. She sent me to Pumonary Dr. He ordered a sputnum test. (they also did one in hospital but said nothing about it.)
Six weeks later, Dr. Pulmonary called me to come in .... told me i had Macobacterium Nebraskan....i do not remember how to spell it. His office staff left nothing to be desired ... so when he made appointment with Infectious Disease doc at Novant in Winston Salem .... I live 34 mins away ... I went myself to get discs, etc etc. Dr. Priest at Novant ..... even WITH directions from hospital could NOT pull up the CT himself. However he said the notes showed nothing signifigant. and dismissed me. I had of course by now on my own stopped the steroids. I was on Levaquin in hospital.
Now nausea was rendering me useless. On an intuition, saw ENT doc here in my hometown. He ran camera down my nose .... could not see any
infection but felt there was on and he put me on a hi powered antibody ... Vantin? something like that. After prescribed time ... no better. Still coughing up suds, pain ... so went back to him. This time he did a sinus CT. showed very deep pervasive infection. Put me on rounds of 3 different antibiotics
with baby dose of steroid .... for six weeks. In the midst of the last round .... the nausea began to abate. and i DID get much much better ... until ..........
began to experience upper respiratory symtoms again early November of this year. so bad on a weekend .... went to Urgent Care. would NOT inhale steroids ..... xray showed nothing ... accepted Albuterol inhaler and Levaquan. sp? The following Monday kept a pre op apt at hospital for hip replacement the 19th of this month. I continued to get worse however. Was working with scheduler nurse at Orthopedic surgeons's office ...... followed through with next pre op appt. bloodwork slightly ... very minor .. off .... everything else ok. no MRSA .. urine fine. When Lisa (wonderful woman
from Ortho) called me with results she could clearly hear i was not well. Intervened and got me into see MY N.P. She took one look and said OH MY! HO! told her i wished to go on with surgery but wasn't sure i could and she and I are going to make decision together. She immediatly took me off
Levaquin .,.. put me on Arithro .. zpak and again ... baby dose of steroid which i am tolerating. She had done a little research into the MAC i have
and finally said ..... NO ... to surgery. So ... it is postponed. I absolutely do NOT KNOW WHAT TO DO NEXT.
The Dr. i saw in winston salem at Novant, Dr. David Priest had given the go ahead for surgery. We now have a new Pulmonary Dr. here in Elkin where i live. My N.P. said she did not think a CT/wcontrast would telll if pneumonia or MAC and my bloodwork did not call for CT. BUT ... she is now wondering if that is what i had a year ago. ??????????????????????? Having had paralytic polio when young .... was several years ago i learned about Post Polio Syndrome. Verified by docs and spinal fluid. Fatigue is a part of PPS .... as is pain, etc ...... but i can cope with that. I meditate ....
exercise ... have wonderful caring friends .. have been an activist all my life but no longer.
Any ideas folks? There has been a dreadful upper respiratory virus going round here ....... it is just so hard to figger out what is tit and what is tat!
I do MAKE myself MOVE. But the fatigue is awful. and i do hurt in right lung area with this. probably all the coffing!!!!!!!!!!! ??????????
One question i do have is .... can "dese bugs" migrate? Is that a sensible question? I quit the FLucotinase...sp? Zycam spray seems to help
much better. I was told that many people are walking around with this particular MAC and don't even know it. The first doc who found it said i could have gotten it anywhere. I garden assiduously and he thot probably there ..... as am inclined to continue working if i get poked er scratched er whutevah! Have to work on my bum because legs are not strong enough anymore from PPS. whatta mess! HO!
I do know that without HUMOR ..... none of us could put up with whatever it tis that we deal with. That and meditation are my go to AND
i do exercises in the hot water of the BATHTUB!!!!!!!!! It CAN be DONE! hO! Thank you for taking the time to read this if i can figger out how
to get it to stick! nelisabeth

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I agree, get ALL of your records and get yourself to a Mayo clinic or other high standard medical institution. I am 58 yrs old and have wasted 25 yrs on pea-poor medical help in various states I have lived in. Because all of my past docs were either clueless or lazy my lungs went without proper care and have progressively worsened to the point of needing a lung transplant in the near future. I have just completed the two weeks pre-qualifying lung transplant tests and passed. The lungs are the most delicate of all of your organs, please don't trust them to just anyone.

Katherine, Alumni Mentor | @katemn | Dec 15, 2016

In reply to @maryjo2sell "Hello. My name is Mary Jo. I am new to the forum. I only discovered you..." + (show)

Terri .. thank you SO much for jumping in with a personal referral for those close to a Mayo Clinic in Florida .. it may help SO may people close to that location! There is nothing better than personal experience to make people trust a doctor .. you have really helped some people .. again thank you! Hugs to you! Katherine

Terri Martin, Volunteer Mentor | @windwalker | Dec 15, 2016

In reply to @katemn "@melissa23 .. Melissa, I have thought of you so often! Where/how are you?! Just wondering ....." + (show)

Hello. I too have been concerned and wondering about Melissa also. Hope she is ok.

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