(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

@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Kathy, I just started the treatment about 1 1/2 months ago. My experience is very much like Kate's at this point. Very tolerable up until now. I'm hoping it continues along this line. Like you the cough is sometimes almost unbearable and can be so embarrassing. I'm hoping this treatment works and helps with my overall health and breathing. I have had copd for well over 20 years but was getting along pretty well up until a year ago when I had lung volume reduction surgery and the MAC was discovered. I have tried to tell the doctors for years that I felt there was something else going on other than just the copd going on. I think the MAC may be what it was I just didn't know I had it or ever heard of it.

Good luck, give it a try if it becomes a problem you can always stop the treatment.

John

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@chinasmom

@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot stop coughing at bedtime or during a catscan procedure. I use sore throat spray to numb the sensation in my throat temporarily. Our coughs are certainly a good thing as they clear our lungs. I also have bladder leaks too and have to tell the lab people I need to take my sputum cup to the bathroom to which they inform me they don't need a urine sample. I have to laugh when I tell them they will get a urine sample on the chair if i cannot take it into the bathroom and sit on the toilet while I try to forcefully cough to get anything out. More times than not I take my cup home because I cannot get any sputum out.
I went straight from period pads to bladder leak pads and early menapause. I have no shame in saying that. I did try natural remedies and many pessarys. I take hormone replacement and that was the only thing that helped with my menopause symptoms.
I also wear a mask every time I leave my home and to take my dog out it helps keep the cold air or the pollen or other irritations out of my lungs . And I glove up to go to the store, doctor's appointments, Pharmacy and friends and families homes. I am mostly a home body now with my Huntington's Disease symptoms preventing me from driving. Most of the time I have disability resources for getting me to my doctors appointments. I got dizzy and had unexplained fevers so my pulmonary doctor admitted me for observation and IV Antibiotics and breathing treatments for 6 days. Afterwards I reciveved home care for two months. I was afraid of getting dizzy while driving. I haven't had a dizzy spell since April. I am dependent on a walker now because of my Huntington's unsteady gait… I am unashamed to wearing a bladder leak product and you should be too. As much as we cough its a necessity. Happy Halloween everyone!!!

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@chinasmom, Thank you for being so open and honest about the necessity of wearing pee-pads. I was wearing them also from 2013-2016 when my coughing was constant and violent. That was at the height of my infection. I thought that I would need the pads indefinitely, or need surgery to get my bladder back in better shape. After my mac and pseudomonas infections were cleared up in 2016; all coughing ceased and my bladder (thankfully) returned to normal. Things can get better!

Liked by anniepie

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@jml060448

Kathy, I just started the treatment about 1 1/2 months ago. My experience is very much like Kate's at this point. Very tolerable up until now. I'm hoping it continues along this line. Like you the cough is sometimes almost unbearable and can be so embarrassing. I'm hoping this treatment works and helps with my overall health and breathing. I have had copd for well over 20 years but was getting along pretty well up until a year ago when I had lung volume reduction surgery and the MAC was discovered. I have tried to tell the doctors for years that I felt there was something else going on other than just the copd going on. I think the MAC may be what it was I just didn't know I had it or ever heard of it.

Good luck, give it a try if it becomes a problem you can always stop the treatment.

John

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@jml060448 Hello John, and welcome to our group! I see that you just joined us yesterday. Just above your post, you will see a white box in the purplish/blue field that says 'Oldest to Newest' with a drop down arrow. If you click on the arrow and then click on NEWEST, you will then be included on current conversations. You can also access a list of topics on the Discussion Board that is located on this Group's main page 'Mac & Bronchiectasis. I too have had COPD for years; mine is congenital. I have bronchiectasis also and have had mac and pseudomonas. I have tested negative to both for three and half years. Are you now being treated for mac with the three antibiotic regimen?

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@windwalker

@anniepie, @judyhogem, Hi all. Just want to add that not all drug treatments are horrible for everyone. My treatment plan had zero side effects (can click on my photo icon to read about mine). Depending on what your susceptibility tests show, you may not need the harsh meds to treat mac. I have tested negative for three years now.

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@windwalker Yes — here's hoping the treatment I'm on works. I wish I had a doctor like Dr Leventhal! Right back at the beginning, I mentioned your drug protocol and treatment success to my pulmonary specialist; who specialises in NTMs and TB. I was really hoping I could try something like the protocol you had. But she didn't agree with it, which is a real shame.
It seems a lot, maybe most, pulmonologists want to just stick with the Big 3 the American Thoracic Society (ATS) pushes as the standard protocol.
In Australia susceptibility testing to each of the Big 3 drugs isn't usually done, or other drugs. They only test for susceptibility to one drug. They do in-vitro testing which is certainly better than no testing, but isn't much good when you have a heavy biofilm disease like M. Intracellulare. Unfortunately, I've been a public/medicare patient, so I didn't get much choice about the tests.
I think Dr Leventhal must have been a really good and courageous doctor to go against the powerful ATS lobby. And obviously he knew what he was doing and listened to his patients' concerns. I really hope your new doctor is as open-minded as he was. And above all else, stay well Terri — that's the best solution

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@windwalker

@jml060448 Hello John, and welcome to our group! I see that you just joined us yesterday. Just above your post, you will see a white box in the purplish/blue field that says 'Oldest to Newest' with a drop down arrow. If you click on the arrow and then click on NEWEST, you will then be included on current conversations. You can also access a list of topics on the Discussion Board that is located on this Group's main page 'Mac & Bronchiectasis. I too have had COPD for years; mine is congenital. I have bronchiectasis also and have had mac and pseudomonas. I have tested negative to both for three and half years. Are you now being treated for mac with the three antibiotic regimen?

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Thank you for the information. Yes I am on the three antibiotic treatment MWF, hoping it works.

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I am trying to categorize these posts newest to oldest and unsure how to do that?

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@ling123

I have gone through the "build-up" phase and the "maintenance" phase. The whole process took about 5 years to complete. I don't believe you can repeat it and receive better or even same result. And I doubt the doctors would even let me repeat it. I understood from get go that the treatment might or might not work and, even if it worked, it might not last forever.

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@ling123 Could you please let us know what your maintenance plan was

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@heathert

@ling123 Could you please let us know what your maintenance plan was

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@heathert I assume you are asking about my allergy shots treatment (allergen immunotherapy), correct? The build-up lasted about 6 months and maintenance the remainder of the 5-year treatment period. During the build-up period, I would receive shots for various allergies every week, then every other week. During the maintenance period, I would receive the same number of shots at a longer interval. I think it was once a month. I'm no longer receiving these shots. That ended a number of year ago.

Liked by heathert

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I also did 7 years of allergy shots.

Liked by heathert

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@heathert

@ling123 Could you please let us know what your maintenance plan was

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Please look after yourselves anyone in Australia with MAC-MAI and bronchiectasis this week! The air is very smoky and bad here in Brisbane from all the wildfires in this state and other states. It's getting hard to breathe now and will get worse this week — keep safe

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Wondering if anyone can help me out in this. II experiences significant nausea before starting on medication (big 3) last February. My nausea went away after a few weeks in the medication but started when I had to stop them in August due to side effects. The nausea started a couple of weeks after stopping and has persisted, although not as bad as it was prior to the medications.

Is this a symptom of Mac? I’ve had some GI testing done but nothing shows up so I’m thinking it’s the Mac. I’d appreciate any comments on this.

Thanks in advance!

Liked by janovr

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@kathyhg

Wondering if anyone can help me out in this. II experiences significant nausea before starting on medication (big 3) last February. My nausea went away after a few weeks in the medication but started when I had to stop them in August due to side effects. The nausea started a couple of weeks after stopping and has persisted, although not as bad as it was prior to the medications.

Is this a symptom of Mac? I’ve had some GI testing done but nothing shows up so I’m thinking it’s the Mac. I’d appreciate any comments on this.

Thanks in advance!

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@kathyhg Sorry you are experiencing nausea. You are wise to have regular checks with a GI specialist. I have Bronch, and I am colonized with m. Abscessus in sinuses as well as lungs. I’m on Gentamicin as a daily maintenance antibiotic, taken as an inhalant. Have not had to start “Big 3”, by God’s grace and daily airway clearance. My docs are at Stanford.

I have significant, periodic, bouts of GI pain, irregularities, and at times nausea. Been scoped from both directions, all they see is some areas where bleeds have healed, and diverticulosis. So they’ll Diagnose it as a bout of “gastroenteritis”. The symptoms are becoming more frequent, and the bouts last longer: the last one was 3 months!

After years of trouble with constipation, I take Miralax daily, and it has been a life-changer to have a daily BM! Who knew what joy?? HA!

They checked me for ciliary dyskinisia, and I don’t have it. They’ve done genetic testing for CF, and I do have a questionable result so they will explore that further soon.

The ENT accidentally hit a nerve during my July Endoscopy, and I had 4 weeks of facial pain….and non-stop nausea. The doctor reminded me sometimes pain can cause nausea. It passed.

I still work full time, I was a college athlete, still exercise daily and enjoy grandbabies, the best medicine of all. Would have never dreamt I’d be alive after being deathly ill in 2015-2016.

I share all this in hopes of helping you or anyone else hang on, have hope, and in hopes we can share clues to help our doctors put the pieces together and make things easier for those who come after us. Blessings, Brenda

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My nausea isn’t extreme but it isn’t caused by antibiotics because I’m not on any yet. I’ve lost about 20 pounds because there are times food doesn’t interest me. My MAC symptoms are mild compared to what others are experiencing. Best wishes!

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@gj53

I am trying to categorize these posts newest to oldest and unsure how to do that?

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@gj53, Hi there. Try scrolling to the top of this thread, there, you should see a box on the right hand side of the page it will say oldest to newest with a drop arrow. Press the arrow and another choice will drop down. Click on the 'Newest to oldest' choice. That will get you there.

Liked by janovr

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@esssbeee

My nausea isn’t extreme but it isn’t caused by antibiotics because I’m not on any yet. I’ve lost about 20 pounds because there are times food doesn’t interest me. My MAC symptoms are mild compared to what others are experiencing. Best wishes!

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@essbee …. my nausea is EXTREME. I have done EVERYTHING I know to do. I am not on any medicine as I could not tolerate it in 2015. My sputum culture just came back positive… after being negative in April. I have no symptoms other than the nausea.
Sofran is not touching it!

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