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(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!
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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!
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Both. If you did not have your hearing checked by an audiologist before starting you need to do it now.
I take Hizentra (infusion therapy) on a weekly basis at home. My IGG is within the normal range and I have stopped getting upper respiratory infections, MONO, and walking pneumonia.
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1 ReactionI am glad to hear it worked so well for you! Wonder how long you will need to take it for or if you are stopping infusions since your IgG is good now.
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1 ReactionThat’s a good question I’ll need to address. I have asthma and history of MAC. Don’t want to do anything that may affect my lungs-that’s where all my past illnesses seemed to have settled.
I would suggest that you let your doctor know and get your hearing checked by a specialist asap. I woke up one day with ringing in my ears (tinnitus) after 6 months on the big 3. My doctor stopped the medications immediately to prevent it worsening and, after testing, I found I had hearing loss as well. It’s been 3 1/2 years off the medication and neither the tinnitus nor the hearing loss have improved.
Thanks for your replies. I have an appointment with hearing Dr on 2/9/23. I had a test about 3 or 4 years ago before on big 3 and it was fine. Have to see how this one comes out. Haven't noticed any hearing loss but the ringing is driving me crazy.
What probiotic do you take ?
Yes, and I cut them in half and put them in a spoonful of apple sauce .
They go down more easily .
Diagnosed yesterday. I had a “poor pitiful me day” yesterday and now I’m ready to fight. What 5 meds are you on please? I have Multiple Sclerosis too and there is some concern about adding medications. Thank you!
Welcome to Mayo Connect. Yes, a MAC and/or Bronchiectasis diagnosis often leads to a "poor pitiful me day" - hardly anyone who doesn't have these conditions has ever even heard of them! And early reading sounds so dire...
Let me begin by saying - a "Big 3" or 5-medication regimen for MAC is not a given. Depending on the severity of your condition, and the presence of other medical conditions, more conservative treatments can be tried first.
For early reading to become familiar with your condition, I recommend:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria and
https://my.clevelandclinic.org/health/diseases/21144-bronchiectasis
And feel free to read posts from all of us on the discussion, and respond with any questions you might have.
Can you tell us a bit about what led to your diagnosis? What tests have been conducted so far?
Sue
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