(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 group.

@sueinmn

Hello – I see you seem to be starting with the Big 3 on a daily regimen. The most usual beginning prescription is 3 times weekly. Did the doctor explain why it is being prescribed daily?

As for when to take, after 2 weeks of nausea and extreme discomfort, I talked frankly to my pulmonologist's nurse and told her there was NO way I could stay on treatment long term feeling so sick. She had me try the bedtime routine, and it worked for me as I was able to sleep (somewhat poorly) through the worst symptoms.

I managed to keep going for 18 months, 12 months 3X weekly, then 6 months daily – long enough to knock Mr. MAC way down, but not entirely out. I now manage with mucus thinners, asthma meds, 7% saline and airway clearance.

I really think the practice of starting the drugs one at a time is a good one.

Is this your first time on the Big 3?
Sue

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SueinMN….thank you for replying. I've been going back in the posts trying to find you.
I started my first treatment on May 14th. All three at once. I lasted for two weeks, then the nausea started, plus fevers, body aches, fatigue, I voice even changed. My bloodwork was all over the place….especially my heart and liver. I was thinking Covid or Flu. My Doctor went to Canada on a vacation so I went to the ER. It was neither. I stopped taking the Big 3 immediately and it took nearly two weeks to get back to a somewhat normal life. I told my doctor I really couldn't start again until after the 4th of July. We were having company and I had one more wedding cake to make and couldn't be sick. Also, requested that we do it different, like I've been reading on this website. Start with one for a week, then add a second for a week, then add the third. I have no symptoms of MAC. It was found by chance with a CT scan of my abdomen. I'm going to take them at nighttime and see how it goes. If possible I would like to keep communicating with you. I can send you my e-mail address if that's allowed. Next question? Do patients talk with an Infectious Disease Specialist in addition to their Pulmonary Doctor? Thank you again, MacInPa

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@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

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Hello, I too have MAC, Bronchiectasis, Hypersensitivity Pneumonitis, Interstitial Lung Disease and they say Asthma but not sure. I know believe I may have been misdiagnosed. Can you please advise what are the 5 antibiotics your taking a I take 4 for MAC + a number of other meds for the other issues I have. 1 is Bactrim I have been on for 2+ years. Please advise and thank you

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@katemn

Hi Kathy!
So glad you got in! I always make sure to set my next appointment while I am there for a 3 month follow up if needed as he is hard to get into.

I hope you like him as much as I do .. as far as I am concerned he just “walks on water”! At my age I’ve dealt with a lot of various doctors over the years .. without a doubt he has been the most caring, watchful and on the ball I’ve ever had. Of course as in all medicine you MUST be your own advocate .. EDUCATE yourself .. keep in mind that NO ONE knows your body as well as you do .. question until you are satisfied that you understand etc.

Hope your appointment goes well! If you are interested .. from various sources I put together a form to take to appointments to remind me of what questions to ask. If you are interested I could email it to you .. you could then adapt it to your own needs. Email me if you are interested .. I think you have my personal email.
Best regards,
Katherine (Kate is just my anonymous name!)

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Can you please email me the form your have. It would be appriciated or post here.

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@helenrivera

Can you please email me the form your have. It would be appriciated or post here.

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Good morning, Helen, Not Kathy, but here is a list of questions to ask:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/questions-to-ask-your-doctor
When you say you think you may have been misdiagnosed, what do you mean? What symptoms or issues do you have? Are you consulting with a pulmonologist or infectious disease specialist who is experienced in treating MAC, and working with complex diagnoses? Many who routinely deal with typical asthma and COPD cases are not aware of the special needs we have.

Sue

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@sueinmn

Good morning, Helen, Not Kathy, but here is a list of questions to ask:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/questions-to-ask-your-doctor
When you say you think you may have been misdiagnosed, what do you mean? What symptoms or issues do you have? Are you consulting with a pulmonologist or infectious disease specialist who is experienced in treating MAC, and working with complex diagnoses? Many who routinely deal with typical asthma and COPD cases are not aware of the special needs we have.

Sue

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Hello Sue, thank you for the form. I was diagnosed with TB in 8/2015. I went to see my Primary as I had a cough and it became noticeable. My skin test or PPD was negative but my x-ray abnormal. I was then referred to a Pulmonologist 9/15. I worked in a TB Clinic as the Administrator and was put on INH. I had several. Bronchoscopies which were negative. The only positive was a blood test the QFT Test. I started losing weight and was fatigued due to this the decision seemed right for TB Treatment but, my cough now considered chronic cough became worse and never went away. During the end of my INH Treatment my cough lessened and we thought I was better. A few months later my cough was worse and more tests done. I asked about MAC then and was told I now have Bronchiectasis. I was given several meds and cough syrup with codeine. I was then told I have asthma. In 2018 I began feeling worse and could barely manage working and running my home and family. In 2019 I relocated my position and transferred my care to a Pulmonologist referred by my original Pulmonologist closer to home I was put on steroids (Predisone) 60mg daily and Bactrim an antibiotic 3 week 10/20. I believe these 2 drugs helped me as I contacted COVID 12/20 and was very ill but, could have been worse. In between these times I have been sick with fatigue, weight loss, chest pain, headache and was having a difficult time. I retired in 3/21 as I kept getting sick and had a hard time with my cough and my voice was nearly gone by the end of each day. I would be given meds for stomach issues, thrush, and the steroids. I was then told I have Hypersensitivity Pneumonitis and Intestinal Lung Disease on top of Bronchiactesis and asthma. Once I started seeing the Internal Medicine MD I advised my Pulmonologist we needed yo decrease the Prednisone and we did at my insistence I am now 10 mg. This decrease was due speaking with the Internal Medicine MD in April 2022 in . They only found the MC as 3/22 I was not feeling well and kept telling my Pulmonologist my chest hurt and felt hollow. Then ER MD was great and ordered several tests and a CT Test. Unfortunately they found a mass and I have a large cavity with lots of nodules/cysts. I was advised April 2022 I had MAC. Was referred to a Internal Medicine and several blood tests and sputum collected. I was put on 3 of the MAC Antibiotics June 2022 again at my insistence as he wanted to wait for the sputum culture.. The 4th. Antibiotic Arykace was started this month 7/1/22 as he was waiting for the culture. It was on my insistence to start the 3 MAC Antibiotics. Sorry for the long response but frustrated and know even if misdiagnosed my outcome is not good and taking all these meds is not the easiest and feel defeated.. Any advise would be appreciated.

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@jilltpayne

Hi. I had difficulty getting to this discussion as MAC was not on the list of things. I am on a three drug regimen 3 times a week to start. The day after i take the drugs, I have tremendous fatigue and do not feel like doing anything – at least until later in the day. I don’t see anything on line that would help me know what to do about this except suffer! They all tell you about side effects, but nothing about what to do to counteract them. I take probiotics twice a day, but also do not have much appetite.
I know it could be worse, but I need to get at least a little more energy.

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Hello Jill T Payne,
I just started MAC antibiotics last month June 2022. Was diagnosed in April. Have several others lung issues. Everything you described is how I feel but only since 7/2/22, the day after starting the 4th antibiotic which is inhaled through a nebulizer. The name is Arikayce. I am going to start taking in the evening and pray I can sleep through this overwhelming feeling of being unwell and in pain.

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Hello Sue, I've started back on the Azithromycin 500 mg July 4th. I took it at 8:00pm before bed. The first week was OK. Then, last night I started the Ethambutol HCL 400mg. Took it at 8:00pm also with the Azithromycin.
At 1:00am I was having cold chills that lasted until 4:00am. This morning I felt like I got hit by a train. Every muscle in my body hurts. Today, I'm going to take them separately. Any suggestions? Thanks, MacInPA.

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@macinpa

Hello Sue, I've started back on the Azithromycin 500 mg July 4th. I took it at 8:00pm before bed. The first week was OK. Then, last night I started the Ethambutol HCL 400mg. Took it at 8:00pm also with the Azithromycin.
At 1:00am I was having cold chills that lasted until 4:00am. This morning I felt like I got hit by a train. Every muscle in my body hurts. Today, I'm going to take them separately. Any suggestions? Thanks, MacInPA.

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Tylenol helped me tolerate the aches & relieved the chills.
If it doesn't resolve in a few days, amybe call the doc – is there a reason for every day instead of 3x a week?
Sue

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@sueinmn

Tylenol helped me tolerate the aches & relieved the chills.
If it doesn't resolve in a few days, amybe call the doc – is there a reason for every day instead of 3x a week?
Sue

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Sue, I was worried about taking Tylenol because of the liver issues. He's never talked about 3x a week. That would help. I'll ask. Thanks again. MacInPA

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GM, I need help as on the 3 MAC antibiotics, Aryikace and using my nebulizer 3 times a day 1st Albuterol and then Saline 3% I cannot cough up hardly anything. Have horrible cough and some comes up and cough is wet still very little. Any suggestions would be appreciated.

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@helenrivera

GM, I need help as on the 3 MAC antibiotics, Aryikace and using my nebulizer 3 times a day 1st Albuterol and then Saline 3% I cannot cough up hardly anything. Have horrible cough and some comes up and cough is wet still very little. Any suggestions would be appreciated.

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Hello Helen @helenrivera You might try Airway Clearance to help bring up the mucous/sputum. For me this includes Nebulizing 7% saline in AM and 3% in PM. Aerobica device 2-3 times throughout the day. Once daily usually late morning I will do postural drainage (you can put that in the search bar at the top of this page and you will find many helpful things to try), then manual percussion on my chest followed by huff coughing then regular coughing and I almost always get up 1-3 tsp of sputum. Luckily I have been off antibiotics for almost 2 years and I have no symptoms other than the cough. My yearly CTs and breathing tests are all stable. I read your history and I see your case is more complicated but I really think the airway clearance will help you. I would invite you to view the following youtube video by Dr McShane.

Good luck to you, Bill

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@helenrivera

GM, I need help as on the 3 MAC antibiotics, Aryikace and using my nebulizer 3 times a day 1st Albuterol and then Saline 3% I cannot cough up hardly anything. Have horrible cough and some comes up and cough is wet still very little. Any suggestions would be appreciated.

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It sounds like you are doing everything right. Not everyone produces much mucus. My daughter has nearly none unless she has a cold. Unless your lungs are crackling, I don't think I would be too worried.
Have you discussed this with your docs?

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