(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.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)

@unicorn Crista,
you probably have heard this from me before, but the aerobics really helps. I am
proof. My lung function went up 4%! I go to a one hour class 2-3 times a week
and ride my bicycle.

imeehaigt | @imeehaigt | Jul 4, 2017

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

@unicorn Crista,
a little blood will happen from time to time. If it is a small amount, it
usually clears up on it's own.

Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2017

In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)

@imeehaigt Just
keep an eye out. Infections can sneak up because they are slow growing. I had
recently watched a video that explained why we have occassional bleeds in our
lungs. It said it is due to an infection in the air sacs. It causes the tiny
vessels to burst. It is localized, that is why the bleeds are mainly small.
Don't bet that because you do not feel or smell something that it is not
brewing. I was diagnosed with pseudomonas a. which is supposed to have a
distinct odor. I did not smell anything. I don't want to get you alarmed, just
be careful.

boomerexpert | @boomerexpert | Jul 4, 2017

In reply to @katemn "@waterboy, do you have a first name .. more personal. I am answering you on the..." + (show)

@katemn how does knowing this help?

imeehaigt | @imeehaigt | Jul 4, 2017

In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)

Thanks! Im keeping an eye on it.

Cindy Courtney | @cindyrnc | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

I've had several episodes of hemoptysis or coughing up blood over the years. It's bright red usually which lets me know it's definitely from the lungs. Once I was on a cruise ship (first night) and coughed up what I thought was a significant amount. It scared me so bad and I'm a registered nurse. I have another question for the group. The doctor put me on Zithromax 500 mg three times a week. Anyone else on this? It gives me abdominal pain and diarrhea and I'm taking probiotics. Any suggestions.

Cindy

irene5 Irene Estes | @irene5 | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

Me too. Same side effects. I was on clarithromycin first but that gave me way more side effects, so the Vanderbilt ID doctor changed me to the Zithromax.

Cindy Courtney | @cindyrnc | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

Irene,

I just don't know how I can work and take the Zithromax. Can't deal with the GI issues.

Cindy

lindam272 | @lindam272 | Jul 4, 2017

In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)

Cindy, I'm taking Azithromycin (same thing?). I had trouble the first few weeks and then it settled down. I never had severe diarrhea but felt like I had bricks in my stomach every day. How I felt each day was measured by how many bricks it felt like were in my stomach. I used to take 3 different probiotics then settled on Digestive Advantage since it has binding agents in it that get more of the bacteria into your gut. Often, many of the bacteria never make it to where they are needed the most! Learned a lot about probiotics during this process. Linda M

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