(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.

anniepie | @anniepie | Jan 10, 2019

In reply to @heathert "Hi ahttps://www.brit-thoracic.org.uk/document-library/clinical-information/bronchiectasis/bts-guideline-for-bronchiectasis-in-adults/ll this the new 2018 bris thoracic guidelines on Bronchieacatasis, I think the last one..." + (show)

@heathert Hi Heather, thanks for this updated UK info. I had only seen the old one previously -- this has a lot more in it that is useful. I wish you and all of us a better 2019, Annie

anniepie | @anniepie | Jan 10, 2019

In reply to @anniepie "@heathert Hi Heather, thanks for this updated UK info. I had only seen the old one..." + (show)

I have a quick question: Has anyone who has taken the Big 3 found their fatigue and drowsiness got even worse in the first few months on these meds? (LOL, I know - how could the fatigue get any worse than untreated acute MACMAI/Bronchiectasis?!?).
Please let me know. Did the fatigue get any better after the first few months on the Big 3?

anniepie | @anniepie | Jan 10, 2019

In reply to @dglaude "Could you give me an update on how you are doing now and about your treatment..." + (show)

@dglaude I started last year and was scared too about the disease and the drugs, very scared. But it is okay, please believe me Terrie. In the end, I decided to go ahead and give them a try.
Just make sure you get baseline blood tests, hearing tests and eye tests. Then have the eye tests and blood tests every month for at least the first few months to monitor how you are going.
I've had drug side effects from the Big 3, some difficult but mostly not too bad overall, and have kept changing my life around to manage them better.
We are all in this together Terrie, and as you can probably tell from the posts on this forum site, we really help each other out. Hugs to you and good luck, Annie

heathert | @heathert | Jan 10, 2019

In reply to @anniepie "@heathert Hi Heather, thanks for this updated UK info. I had only seen the old one..." + (show)

Thanks @anniepie 😉 Take care. Heather

boomerexpert | @boomerexpert | Jan 10, 2019

In reply to @jkiemen "@xfirerose I have had 2 bronchoscopies They sedate you and numb your throat. I don't remember..." + (show)

@xfirerose I had no after effects from mine

Jo Ann K | @jkiemen | Jan 10, 2019

In reply to @anniepie "I have a quick question: Has anyone who has taken the Big 3 found their fatigue..." + (show)

@anniepie I find I do get more fatigue on the BIG 3

Jo Ann K | @jkiemen | Jan 10, 2019

In reply to @sallykuni "Hello! This is my first time to write/join this forum. I'm excited to find other comments..." + (show)

@sallykuni

Hello! This is my first time to write/join this forum. I'm excited to find other comments about Mycobacterium Avium and the treatment. I was diagnosed with MAC after a year of symptoms: coughing, fever, fatigue - bronchitis and pneumonia type symptoms. Every 6 weeks or so, the symptoms would be so bad that I was bed ridden for 3-4 days. My doctors originally did a CT Scan and a PET scan and sent me to MD Anderson for a lung biopsy - suspecting lung cancer due to the lesions in my lungs. It took over 3 months to diagnose MAC - and then only when MDACC did a bronchioscopy and sent the lavage results to MAYO Clinic to diagnose. Needless to say - having MAC was a much better diagnosis than having lung cancer - so my family and I celebrated!
Originally, the doctors tried to treat me with a twice daily breathing treatment of albuteral and sodium chloride. I am still doing this treatment twice a day, which takes about 30 minutes each session. When the next two CT scans showed that the infection was moving from my left lung to my right lung also - they immediately started me on the antibiotic regimen - 3 antibiotics (same big 3) three times a week. I have been on this treatment for 3 1/2 months now. In the beginning, I felt horrible, but quickly learned that I needed to take my meds at night - between 9:00 and 10:00 pm; after I had a light dinner before 7:00 pm. I also take probiotics (the refrigerated pill option offered by Walgreens. They keep it in the refrigerated section of the pharmacy, so ask your pharmacist for it specifically) on the opposite days that I take the antibiotics. Not sure that this helps, but I know that it doesn't hurt! The first month or so; I lost weight; but have held steady ever since. Also - although I love salads; vegetables; etc - I try to maintain a diet that contains very little of these ONLY on the days that I take my meds. I have found that I feel better with less ruffage; fruits and veges on these days. I make sure to eat them on the days "off" the meds.
What I have found is that the key to making it through this antibiotic regimen is water, water, water. DRINK TONS OF WATER! I try to drink between 80 and 100 ounces of water per day. My infectious disease doctor and my pulmonologist told me this from the beginning and I believe it has helped me cope so much better!
My last CT scans showed that the antibiotic treatment is working and my lungs are improving! Originally - my doctors said that I might be on the antibiotics for 18-24 months. They gave me hope this last visit that it might be shorter than that! My coughing symptoms have really improved; and so has my feeling of extreme fatigue! In addition - I have not been "sick" (fever, etc.) since October 1st - which is over 3 months ago and that is a good sign!
I was wondering if anyone on this forum has had a problem with their eyesight due to the ethambutal?
I'm hopeful for all who are being treated for this disease and grateful for the comments on this forum. It is comforting knowing that you are not alone!

Jump to this post

@sallykuni I have had to get my glasses changed once since being on the BIG 3. I am glad your CT is looking better. I am on month 13 of the treatment. In March I have a follow-up CT. We continue to pray for better treatment options. Since MAC is so slow growing it is so slow to treat. So right now we are stuck with the BIG 3.

sounder27 | @sounder27 | Jan 10, 2019

Anyone have a condition that prevents the drug regimen because of dangerous interactions

sounder27 | @sounder27 | Jan 10, 2019

I was diagnosed with mac and bronchiactisis 3 years but also have afib and take 4 drugs for that condition. The pharmacist notified me that claryromcin would interact with flecanide and couldn't be taken at the same time. Anyone have any suggestions?

Barb | @1065408 | Jan 10, 2019

In reply to @sounder27 "Anyone have a condition that prevents the drug regimen because of dangerous interactions" + (show)

Diagnosed year and a half ago. Allergic to all antibiotics. Have not had one in 36 plus years. Monitoring MAC/bronchiectasis carefully.

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