Connect
(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@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?
@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
Thank you for the information. Yes I am on the three antibiotic treatment MWF, hoping it works.
-
Like -
Helpful -
Hug
1 ReactionI am trying to categorize these posts newest to oldest and unsure how to do that?
@ling123 Could you please let us know what your maintenance plan was
@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.
-
Like -
Helpful -
Hug
1 ReactionI also did 7 years of allergy shots.
-
Like -
Helpful -
Hug
1 ReactionPlease 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
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!
-
Like -
Helpful -
Hug
1 Reaction@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
-
Like -
Helpful -
Hug
1 Reaction