(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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

I was not…my pulmonologist – exertise with MAC – recommended I take something for it as it’s common…I went with something light and working fine!

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@katemn

@beatitnow, Amy I am so glad you found this wonderful supportive group of people! Aren’t they GREAT! @jillnc .. Jill, @21042 .. Kathi , @boomerexpert .. Boomer, @lindam272 .. Linda .. thank you SO much for jumping in to help Amy! YOU are what makes this community what it is .. such a thriving caring place that welcomes newcomers on this MAC journey that we are all on .. so NONE of us have to ever feel so alone again! Helping others as we have been helped .. even if we are just ONE step ahead of them! “Playing” it forward! Hugs to all! Katherine

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Being dehydrated can cause headaches. Drink lots of water all day long 🙂  hope you don’t have headaches again.I’ve had acid reflux since probably 2008 or 2009 when I was diagnosed.  I was in the hospital for an outpatient procedure and the nurse in my recovery asked if I’d ever been checked for reflux because of my constant clearing if my throat.  I said no and she said she would get it checked out.  I finally did as I was having issues swallowing too and my reflux was so bad it made my esophagus brittle, found during a procedure to put a balloon in to expand my esophagus  (which didn’t happen when the dr saw how brittle it was).  I was put on reflux meds and my esophagus recovered.  I’ve had an endscope as recently as last year and with acid reflux meds it looks good.  However there has been some question of sclurrederma (sp?) From my 2nd high res ct scan, but I haven’t followed up yet on that, since it was just checked last summer.I have so many things going on it’s always interesting to me to see how things are intertwined for me personally, as I have no clue which ‘came first’.

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@katemn

@beatitnow, Amy I am so glad you found this wonderful supportive group of people! Aren’t they GREAT! @jillnc .. Jill, @21042 .. Kathi , @boomerexpert .. Boomer, @lindam272 .. Linda .. thank you SO much for jumping in to help Amy! YOU are what makes this community what it is .. such a thriving caring place that welcomes newcomers on this MAC journey that we are all on .. so NONE of us have to ever feel so alone again! Helping others as we have been helped .. even if we are just ONE step ahead of them! “Playing” it forward! Hugs to all! Katherine

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@jillnc, Jill, so interesting! Aren’t our bodies SO complex .. amazing! Thanks for sharing .. each bit of info on our Forum pages helps other members! Hugs! Katherine

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@katemn

@beatitnow, Amy I am so glad you found this wonderful supportive group of people! Aren’t they GREAT! @jillnc .. Jill, @21042 .. Kathi , @boomerexpert .. Boomer, @lindam272 .. Linda .. thank you SO much for jumping in to help Amy! YOU are what makes this community what it is .. such a thriving caring place that welcomes newcomers on this MAC journey that we are all on .. so NONE of us have to ever feel so alone again! Helping others as we have been helped .. even if we are just ONE step ahead of them! “Playing” it forward! Hugs to all! Katherine

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@beatitnow .. Amy, as you read past pages you will probably be astounded how many of us with MAC DO have GERD! Myself it happened when I feel my stomach just got torn up with a LOT of meds with pneumonia in 2001 .. with many it is “silent GERD” and really causes a lot of issues. If I was you I really would get it checked out! By the way .. it really does help to raise the head of your bed by 5-6 inches! Hugs! Katherine

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@katemn,
The Healthy Living Center offers a wide array of wellness services. However, they are not free. Prices range from $10 for individual classes to $800+ for extensive multi-day programs and personal coaching. Here is the website for more information https://healthyliving.mayoclinic.org/

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@jentaylor Jen Please see the post from Colleen .. this is helpful information that I was not aware of .. please check to see IF there is any financial help for you to be able take advantage of this service! Hope things are going well for you! Katherine

The Healthy Living Center offers a wide array of wellness services. However, they are not free. Prices range from $10 for individual classes to $800+ for extensive multi-day programs and personal coaching. Here is the website for more information https://healthyliving.mayoclinic.org/

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@lindam272

Amy, Rifampin is the most difficult of the 3 for me. I did get headaches while taking them and took an Excedrin or 4 ibuprofen to find relief. Typically I took the ibuprofen when some other parts of my body were hurting as well and Excedrin if I only had a headache. I expect the “short term” idea is because of the side effects of taking long term and potential damage to organs. I don’t seem to have as many headaches these days – 3 months into taking the meds. Linda

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What is dosage of ibuprofen? I was told 400mg    then later another 400We don’t need 800 mg at one time.
Mari

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@lindam272

Amy, Rifampin is the most difficult of the 3 for me. I did get headaches while taking them and took an Excedrin or 4 ibuprofen to find relief. Typically I took the ibuprofen when some other parts of my body were hurting as well and Excedrin if I only had a headache. I expect the “short term” idea is because of the side effects of taking long term and potential damage to organs. I don’t seem to have as many headaches these days – 3 months into taking the meds. Linda

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It’s not doctor’s order, it’s my preference. I could probably get by with less. I just know that works so I typically down 4 at a time.

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@lindam272

Amy, Rifampin is the most difficult of the 3 for me. I did get headaches while taking them and took an Excedrin or 4 ibuprofen to find relief. Typically I took the ibuprofen when some other parts of my body were hurting as well and Excedrin if I only had a headache. I expect the “short term” idea is because of the side effects of taking long term and potential damage to organs. I don’t seem to have as many headaches these days – 3 months into taking the meds. Linda

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@lindam272, Linda, I SO agree .. “Less is More!” The least we can get by that will do the job .. the better .. unless doctor orders of course! Hugs! Katherine

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leg/arm discomfort and distilled water
Posted by @128128terry11t in MAC & Bronchiectasis, 3 hours ago
I have a couple of questions:
Anyone experience leg and/or arm aches probably from rifampin?
After cleaning the aerobika in warm, sudsy, regular water, do you have to rinse the aerobika in warm “distilled” water or is it all right to use warm regular water? Finding it difficult to keep up with the amount of distilled water needed and the awkwardness of warming it up by putting it in pot on stove. Any better method to warm it? (Oops, that makes three questions) Would be much easier to use regular water for the rinse if permitted.
Thanks to all involved in this comforting, much needed forum.
Terry

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Terry, I hope you don’t mind .. but I am answering your question on the Main MAC page because I think you will get more answers plus I think the answers are excellent for newcomers to have as reference as they read past pages.

@128128terry11t Terry, I DID have what I called “restless leg” from Rifampin. I KNOW it came from the Rifampin because when I stopped the Rifampin the weird nightly leg issues ended. For me I was busy in the daytime so I noticed it mostly at night.

I can ONLY speak for myself .. I follow the cleaning method on the Aerobika website: https://www.monaghanmed.com/patients-education .. the same one that came with the Aerobika. I use very warm water in a mixing bowl with a bit of antibacterial dish soap. Suds it up .. hold the parts and shake them very thoroughly through the sudsy water. Let the parts soak for 10 to 15 minutes. Then several times fill the bowl with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap. Lay them out on a clean paper towel .. let them air dry. Re assemble and I am good to go! On the website it does not refer to distilled water .. I am SURE it would be a good cautionary detail but I am satisfied with my method. If you are unsure you could confirm by calling 800) 833-9653 .. or better yet .. ask your Pulmonologist or Respitory Therapist.

I called Aerobika Customer Service directly and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC. https://www.monaghanmed.com/patients-education

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thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don’t know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don’t mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN’T have to be that way. If you CHOOSE a “helping” career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a “helping” career. That is just my opinion. I don’t feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member’s path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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Hi Katherine, thanks for having that discussion with me! You make incredibly good points! No, I will NOT let the fear win! That being said, I have concerns that need addressed. My oxygen assessment wasn’t to great. My pulse ox at rest averages at 90%. Then with mild/mod exercise, walking on the treadmill, my pulse ox dropped to 86%! So, know I know WHY I’m feeling so seagull & like I’m going to collapse as I run around between appointments & the airport & things at home, like grocery shopping or even taking a shower & getting dresssed. So, I imfoetunely need to start using oxygen AGAIN☹️! When I am active. I asked about swimming since that’s when of the few exercises I can do without pain…she said she knew someone that took a tank & set it on the edge of the pool, then had a 50 ft cord & would swim just that far then back again. So since learning this, I would really like to speak to Dr. Aksamit some questions. When I looked at my itinerary, there is not another appointment scheduled with him. I assumed there would be an “ending” appointment with him after we’ve had our testing & consults with other physicians & we also made a game plan. So I went to his dept., I requested that I gave an appointment scheduled with him. She said she would send him my request but she had no guarantee that he would allow that to be scheduled.

I have not been feeling well today…which I’m sure lack of oxygen is playing a part of & a low grade temp. & vertigo & “sea legs” which isn’t a common thing for me. Also my usually controlled, blood sugar that has not required insulin since Nov, is out of whack. My fasting today is 177?!!! & 2 hr after meal in the mid 200’s. Why would it jump like that so quickly??!! All I can make sense of is that it’s a sign of an infection, at least that’s what it’s meant in the past. My sister-in-law who is a PA & husband (my step-brother is an ER Dr) encouraged me to consider going to the ER/ED. But I’d rather not just because I don’t want to be a pain in the butt & I don’t know if they could do much or if they would do anything at all.

The salt saline neb treatment meant to induce coughing up mucous, did not work for me. I have the hardest time bringing up mucous unless I’m having an acute infection. I have 2 more scheduled go try. Otherwise we have to do a bronch.

My appointments are scheduled out past my time here which I’m concerned about. One of the appointments is with the immunologist (Scheduled April 3— my plane ticket is for March 31). On March 31st I’m scheduled for a teaching session with the endocrinology teacher, focusing on behavior related to diet & paying attention to both carb AND fat (my triglycerides are in the 600’s!!!!) Next appointment is scheduled with the immunologist, which aside from pulmonary, is the most important one for me to see! So tomorrow when I’m done, about 10:30, I will head over to the immunology dept & camp out for the day in hopes of getting in. Then if I do, great! If I don’t, I’ll try the next time I have free & the next time & the next time & so on, until I either get into see him or I have to fly home! If I can get into to see him, that would be awesome! Then the next day I would work on getting into GI/hepatology which is important but not as pressing as the others. Right now, it’s scheduled for May 2.

I’m overwhelmed with all of the info going into my brain. But I think what is at the center of my fear is the fear of premature death & not being here to be a mom to my Emma. When I am talking with all of these doctors & getting these not so good test results, it fixes me to face my reality, that I am not physically well. I have A LOT wrong with me. I know I’m in trouble when the “well-seasoned” doctors used to seeing many “troubled” patients, reacts to my 46 med list, & diagnoses list. That makes me scared. That I’m at a top notch place & even they are thrown for a loop when working with me. I don’t get positive reaction from the doctors & it makes me so scared & makes me want to just X-ray. I did cry in fact.

I’m emotiomally overwhelmed but I think a big part of that is because I am physically ill. When I’m hypoxic, I’m usually very emotionally overwhelmed but it’s actually because I’m not getting adequate oxygen. It causes me to feel “out of whack”! It’s hard to, being on my own. But I’m doing it & I’ll keep moving forward. I’m trying my best to stay positive! I’m so grateful that I actually got to they Mayo Clinic!!! It’s a dream come true!!!!!! I don’t mean to sound nevative at all…I’m just facing my reality & I need to be ok with that & findout what can be done to make things better at least manageable or keep from getting worse. I will go through the forum back pages to get more educated & also not feel so alone. Thanks for listening & being a support!!!!!! ~Jen 🙂

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@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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Jentayler…..re plane ticket for march 31st….once upon a time airlines would allow for changes if there was a documented medical reason…..call airline and ask….nothing to loose.
Also re some of your symptoms …..have you had any cardiac testing there or somewhere else?
Hang in….we are all sending you the white light!!
Terrid

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@tdrell

Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI……multiple tests. My local pulmonologist sent me to local ID doctor in OCtober……but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks…..

I do not show indications of the infection hence do not require treatment.

The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much…I dont have the typical NTM symptoms….fatigue,chills,weight loss,fever….only the cough and mucus.
The final outcome after tests and analysis:

-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ….weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think…..had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell

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Gggrolfs…NTM means non tuberculin mycobacterium…as of July 2016 microbiologists have found 171 different ones….most of us have the most common one MAC…mycobacterium avian complex tdrell

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@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about ‘horror stories’ .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON’T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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@jentaylor Jen, SO glad to hear from you! Have been wondering about you! Interesting about using oxygen at the pool .. a dear friend of mine always in great pain from back injuries found pool exercise the ONLY form of exercise that relieved her pain plus added to her quality of life and health .. definitely worth checking out the 50 ft oxygen cord! Might also really be helpful to check into this .. gets excellent reviews for increasing lung capacity: Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com Read the reviews and how to use at https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I

My advice would be NOT to wait to just get an appointment with Dr. Aksamit .. SAY: “I prefer an appointment with Dr. Aksamit BUT I depart Mayo on March 31 .. and I REALLY want to see one of the MAC Pulmonary Team prior to my departure. WHO can fit me in IF I am unable to see Dr. Aksamit?” .. Jen, be persistent. The squeaky wheel gets the oil .. remember!

Request to see an Endocrinologist .. TELL them about your blood sugar and you are concerned you may have an infection!! This is important! My husband has the same issue .. ANY time he gets an infection .. his blood sugar goes crazy! JEN .. QUIT WORRYING ABOUT BEING A PAIN .. your health is at risk if you have an infection!! GO TO THE 18th floor .. Pulmonology .. tell them about this .. ASK them what you should do .. ASK IF one of the Pulmonary team can get you set up with an Endocrinologist since you are a patient of Dr. Aksamit. REMEMBER .. Mayo deals with the WHOLE body .. working as a team to deal with all health issues .. take advantage of it!! AND keep me posted!!!!!!

“The salt saline neb treatment meant to induce coughing up mucous, did not work for me. I have the hardest time bringing up mucous unless I’m having an acute infection. I have 2 more scheduled go try. Otherwise we have to do a bronch.” Jen, hope you don’t end up with a bronch .. but what is .. is. I also have ended up with the salt neb treatment ending up “too scant”.

“My appointments are scheduled out past my time here which I’m concerned about.” One of the appointments is with the immunologist (Scheduled April 3— my plane ticket is for March 31).” Jen, from my File Cabinet did you read about:
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

ESPECIALLY **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.

THIS IS A GREAT IDEA YOU SAID: On March 31st I’m scheduled for a teaching session with the endocrinology teacher, focusing on behavior related to diet & paying attention to both carb AND fat (my triglycerides are in the 600’s!!!!) Next appointment is scheduled with the immunologist, which aside from pulmonary, is the most important one for me to see! So tomorrow when I’m done, about 10:30, I will head over to the immunology dept & camp out for the day in hopes of getting in. Then if I do, great! If I don’t, I’ll try the next time I have free & the next time & the next time & so on, until I either get into see him or I have to fly home! If I can get into to see him, that would be awesome! Then the next day I would work on getting into GI/hepatology which is important but not as pressing as the others. Right now, it’s scheduled for May 2.

Jen, you CANNOT BE “I’m overwhelmed with all of the info going into my brain.” What you CAN do is take LOTS OF NOTES to read when you get home. That is what I do .. knowing there is no way I am going to remember all that I am hearing. Focus on serenity .. trusting the process .. being grateful you are where you are .. attitude of gratitude! Put your energy into what you can control .. let go of what you CANNOT control! I know it is a very scary process to hear all this . but know we are all here .. behind you .. rooting for you .. you are NOT alone .. we are here supporting you .. sending you LOTS of positive energy and lots of hugs! Katherine

Liked by tdrell

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