(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 Support Group.

lorifilipek | @lorifilipek | Jan 30, 2023

In reply to @christielynn "Thank you! That is one research paper I had not seen. I wish they would study..." + (show)

@christielynn Figure 1 of the paper is misleading regarding locations proximity to different types of water bodies. The text does talk about salinity (p. 329, 2nd column, 2nd last paragraph): “Previous studies have found that NTM do not grow well in waters of high salinity, as in ocean water. (37) Optimal salinity for NTM is 1–2% salinity, while ocean water is typically 3–4%. (37) While ocean water is quite prevalent around the state of Florida, only two patients in the cohort lived closer to an ocean than any other water type. One of these two patients cultured positive for NTM; however, she also lived within 500 meters of a body of water in the rivers/streams category.”

lauraadam2425 | @lauraadam2425 | Jan 30, 2023

Has anyone heard that ringing in the ears or itchy skin is a side effect of mac if on the big 3.

Sue, Volunteer Mentor | @sueinmn | Jan 30, 2023

In reply to @lauraadam2425 "Has anyone heard that ringing in the ears or itchy skin is a side effect of..." + (show)

Both. If you did not have your hearing checked by an audiologist before starting you need to do it now.

dford53 | @dford53 | Jan 30, 2023

In reply to @cmb1 "Since my immunity was so low, my IgG specifically, once a month I undergo these intravaneous..." + (show)

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.

cmb1 | @cmb1 | Jan 30, 2023

In reply to @dford53 "I take Hizentra (infusion therapy) on a weekly basis at home. My IGG is within the..." + (show)

I 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.

dford53 | @dford53 | Jan 30, 2023

That’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.

kathyhg | @kathyhg | Jan 31, 2023

In reply to @lauraadam2425 "Has anyone heard that ringing in the ears or itchy skin is a side effect of..." + (show)

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.

lauraadam2425 | @lauraadam2425 | Jan 31, 2023

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.

angeles31 | @angeles31 | Mar 8, 2023

In reply to @suttonmac2009 "I can't imagine dealing with Cancer and MAI. I was on three drugs until I couldn't..." + (show)

What probiotic do you take ?

aprado31 | @aprado31 | Mar 12, 2023

In reply to @boomerexpert "Does anyone else have difficulty taking the pills due to their size?" + (show)

Yes, and I cut them in half and put them in a spoonful of apple sauce .
They go down more easily .

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