(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017

In reply to @katemn "Dear All, As many of you know .. I also see a trusted Homeopathic Practitioner ....." + (show)

@katemn

Dear All,
As many of you know .. I also see a trusted Homeopathic Practitioner .. I am always concerned about a repeated use of ANY over the counter product .. I counseled with her on my use of the sleep product Unisom for my sleep disturbance.

Her response was: "With the Unisom, diphenhydramine or doxylamaine, it dries out the bronchioles, so that may cause rebound cough. Also, with long term use, it may cause memory issues. " Members, I am SO glad I check with a professional .. remember she is also a Pharmacist! Per her recommendation I have updated my File Cabinet per below! Hugs to all! Katherine

So my updated File Cabinet is:
SLEEP DISTURBANCE I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now "stable". As I have posted I really don't know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn't really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use nightly two things : a. ONE TwinLab Magnesium 400mg tab
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1484004326&sr=1-1&keywords=twinlabs%2Bmagnesium%2Bcaps&th=1
The TwinLab tabs have really helped me .. can't say they would for you .. but do be aware they will result in looser stools! I no longer need to take Fibercon 2x per day!

SECONDLY .. UPDATE: ** Sleep disturbance b. and ONE 3mg Nature Made Melatonin tab (As we age, our bodies produce less and less melatonin. If you're one of those people who say melatonin keeps you awake, it likely because you've been taking too big a dose. A few people can take 20 mgs and it puts them to sleep! Many of us will toss and turn with 10 mg. A small 3 mg dose works fine for me. You can always take two (or more) to find the dose that works for you. Melatonin is not a "One Size Fits All" )

Melatonin may improve sleep disturbances in a wide range of patients, including those in the intensive care unit (ICU) and patients with Alzheimer's disease. Several published cases report improvements in sleep patterns in young people with damage to the pineal gland area of the brain due to tumors or surgery. Based on preliminary research, melatonin may improve sleep in patients with asthma or depression. Further research is needed in these areas before a firm conclusion can be reached.

Another Tidbit .. I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:
You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.
For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

Jump to this post

@katemn Katherine,
over the counter allergy meds often have those same ingredients. I used to
'live' on them to dry up all of the crud in my lungs. It seemed to give me
relief, but pulmonologists say not to use them too much because they do dry your
lungs out. It dries the crud and keeps it in your lungs leading to 'mucous
plugs'. Those of us that are seasoned 'lungers', know that that is not a good
thing. Those plugs trap infection and clog your air sacs. And girl, I wish you
could get some sleep!

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

@lindam272, Linda, you said " So I’ve had 2 clear sputum tests and didn’t even know it. No one told me and I didn’t know what I was looking at when I reviewed the results – until you all came along!" Oh Girlfriend .. we just don't know until we KNOW!! Just like nobody told me I had THREE new bacteria until I requested a copy of MY Sputum Culture Report! BUT Linda I would NOT go off the antibiotics after ONLY two negative reports! WHY .. because Mayo Clinic says: you must have TWELVE negative sputum culture reports in a row to be home free! Tough but true.

Linda, It is YOUR body and YOUR journey .. but you have a LOT more life to live .. do you want to end it with an oxygen tank because of impatience now? Linda, I did FIVE antibiotics .. ONE of them an inhaled antibiotic 2x a day for THIRTY months .. BUT I have been "stable" since 2014 .. NAME YOUR POISON! Brain Fog is a small price to pay for NOT ending up on Federal Disability because you CAN'T BREATH!

Linda, it is YOUR life .. BUT do you think I would be taking the time to type this darn thing out if I didn't care? You think I have nothing else to do? No books to read .. no friends to call? NO .. it is because when you say " They are dead. I know they are dead." I know you have your head in the clouds and maybe only Mama Katherine can tell you like it is because you DO know I care. So whatever your decision .. we all will support you .. EVEN @windwalker Terri with her oxygen tank and 44% lung capacity! (hint .. hint! .. so subtle aren't I 🙂 ) But PLEASE think this thing through .. and STAY on your antibiotics until your CT scan AND listen to your doctor .. stay on the antibiotic treatment so the mycobacterium does NOT become resistant!

I cannot find it .. but somewhere I read that after the FIRST round of MAC/MAI treatment .. the mycobacterium becomes VERY difficult to treat .. cannot remember all I read .. but I suppose it is like all bacteria .. it mutates and can no longer be killed by the BIG 3. THINK about it!
Hugs to you! Katherine

From my File Cabinet
STOPPING ANTIBIOTIC TREATMENT EARLY
Stopping a course of antibiotics early leads to antibiotic resistance? If you stop treatment early, there is a risk the antibiotics won't have killed all the bacteria that made you sick and that it will mutate and become resistant. ... Whatever the length of the course of antibiotics – take the full prescription. http://www.who.int/features/qa/stopping-antibiotic-treatment/en/

Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017

In reply to @jula73 "I am a 73-year-old female with a recent diagnosis of MAC along with a history of..." + (show)

@ling123 Sadly,
I would love to live in Va and be near my daughter, but I know that would
mean constant lung infections. The winters are fickle, hot, freezing, and
DAMP! Then add to that rotting leaves everywhere with mold and fungi
underneath, and spores. Cold air used to burn my lungs when I would go
outside. I would wear a scarf and cover my face. Since I have been treated
at the Mayo, I am not as delicate as I used to be. I believe it is due to
finally getting rid of the mycobac-bugs.

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

In reply to @pfists "Hi all Haven't been on here for awhile. Saw my infectious disease Dr today. She wants..." + (show)

@pfists, Shari, I did antibiotics PLUS inhaled Amikacin .. the inhaled Amikacin went DIRECTLY into my lungs. BUT each of our situations are different!

Shari, once you have an appointment way out .. THEN start NICELY calling the Pulmonary dept and requesting a cancellation .. tell them you are very active on Mayo Clinic Connect .. if they have never heard of it .. EDUCATE THEM! Colleen and all of us are trying to get the word out to all the doctors and staff people .. believe it or not MOST aren't aware of this WONDERFUL service to the patients!!
507-266-0413 .. tell them you would LOVE to see Dr. Aksamit but anyone on his team is fine since you understand the DO work as a team.

From my File Cabinet:
Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s
MAYO SCHEDULING .. ONCE YOU HAVE THE APPT https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/

FROM MEMBER @jillnc The one thing I wish the first dr would have told me is that when you get this schedule of tests/appts/blood work, you can go to the desk and see if they can get you in earlier. I had tests and appts spread over 4 days and was able to get all testing done within the first day and a half. Then I was able to get 1 of my 2 addl appts moved up. Which was nice because they ordered additional tests and I had pretty much freeded up a whole day (which was quickly filled with more tests). Everyone is very helpful. Just ask as you don't want to walk to the wrong desk to be told you have to go elsewhere **Rochester we have a "checker desk" located in the Gonda lobby and admissions area where patients can talk with a representative, discuss what appointments they would like to get into early and the checker desk does the calling to rearrange the patients schedule. This is strictly for consultation not testing. Also, please keep in mind that not all departments accept checkers but the majority do.

Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017

In reply to @pfists "Hi all Haven't been on here for awhile. Saw my infectious disease Dr today. She wants..." + (show)

@katemn Ha!
My Dr at Mayo didn't know about this forum either. He thought it was
wonderful.

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

In reply to @lindam272 "One more thing - for all those using the Aerobika - that needs to be changed..." + (show)

@lindam272, Linda, my guess would be those greenish rubberish parts I see .. probably give out in time? I guess we need to use indelible marker to date them! Thanks Linda! Hugs! Katherine

Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017

In reply to @katemn "Dear All, As many of you know .. I also see a trusted Homeopathic Practitioner ....." + (show)

@katemn

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

Jump to this post

I just crawl into bed with the tv on with the sleep timer set at one hour. I am usually asleep within 20 mins. or less. The tv keeps my mind from thinking too much; that is what used to keep me awake. Plus, my bed is like a super comfy nest. Everything is soft and billowy. All cotton sheets and covers are a must because they breathe and keep you cool. Polyester blends do not, they hold heat. Ceiling fan to keep air moving. Oh yeah, and hubby in his own room! ; )

Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017

In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)

@lindam272 Linda, I am so happy for you! - Terri

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)

@auntnanny, Jan, We have a very dear friend who has a form of ALS who is a lifelong musician .. worked his way through law school as a sax player. As his lung capacity diminished he was determined to continue with his jazz band AND enhance his lung capacity .. sure enough .. he took up the harmonica AND has maintained as much of his lung capacity as possible with daily harmonica practice! So the below really caught my eye! Thought you might enjoy it! Katherine

Modern Healthcare, Meet the Harmonicats: Using musical therapy for COPD, “Play three verses of ‘Oh! Susanna’ and call me in the morning.” That could become a common “prescription” pulmonary specialists pass on to their patients as “harmonica therapy” for chronic obstructive pulmonary disease starts to take hold. Harmonicas have been used to improve lung function at hospitals across the country, including the Mayo Clinic, Jacksonville, Fla.; El Camino Hospital, Mountain View, Calif.; Seton Medical Center, Austin, Texas; and Advocate Christ Medical Center near the South Side of Chicago—an area that’s produced some legendary blues harmonica players.

auntnanny | @auntnanny | Jul 15, 2017

It certainly makes me smile. I've never even tried a harmonica ---- but may be headed out to buy one. I have so much trouble finding enough time for everything (as I'm sure others do too). I cook lunch for the hired hands here on the ranch (and I'm a pretty good cook and put a lot on the table). So, from the time I start that until they eat and I get it cleaned up, I'm in for about 3 hours. Then...... I'd really like to just sit down -- Ha! I'm past 76 and have quite a bit of arthritis (and two torn shoulders that need to be replaced. Too much damage and arthritis to repair but there's so much down time and I don't know how successful that would be at this age. I've been reading a bit about stem cell replacement for some of these type problems........ know anything about that???? I have two grand pianos, an older 3-keyboard organ and a newer electronic piano/organ ----- and one saxophone in the house...... maybe I need that harmonica ----- and a lesson book. I saw a country music show in Branson, Mo --- young man was just ever so cute -- and he had what looked like a new type harmonica with a fabulous sound. I need to learn about that because it was great. Larger than just the old-type harmonicas ----- I was sure impressed. As I think back over today (here at 12:30 am) I never did my nebulizer today and I don't want to let up on that. Guess I'll wait till morning and be sure I do it twice tomorrow. Now...... if I were coughing, I would have thought about that much earlier today. Goodness, I feel like I've written a novel. So sorry to bog you down with these little sidenotes. Jan

View More View Less

Please sign in or register to post a reply.