(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.

@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@hopeful33250 I am in a very large email loop with the women from my water classes -- we don't all come at the times but on Wednesday and Friday the instructor gives a good workout and is fun to boot so there are generally about 20 people there.
I digress, but the point is that one of them who is currently not able to attend due to health issues keeps in touch sending funny emails and some that are thought provoking. She recently forwarded one that had such bigotry in it I could not keep from responding. To me it was shocking so I couldn't just read it and let it slide.
JK

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@contentandwell Yes, I understand exactly what you mean. Teresa

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@contentandwell, JK .. I just delete these type emails .. Why? Because despite these emails .. I know a BIG part of this person's heart is good .. that the bigotry comes from her family history .. upbringing .. era and geographic area she grew up in. I love the saying "When I knew better .. I did better." Unfortunately many people just do NOT know better .. so I just delete. Hugs to all! Katherine

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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Indeed! I simply got lucky...but you can tell by talking with an EM practitioner if s/he is worth a try. The supplement, I've learned, helps to grow cilia for better cleansing, and it does act as a bit of cough easement...to keep from the rattling, hurty cough (I don't cough, so use for the cilia!)

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This remedy has a number of purposes, easing cough is one (not suppressing it), but mainly helps the lungs grow cilia for cleansing.

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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Wow, looked up this Ambroxol/Muscosolvan. Very promising. And you say it does help you. I see it is only available in foreign countries. I was thinking I would make a special trip to Mexico just to get it. Then my husband reminded me we are going on a cruise in Sept and it stops in Cozumel! I looked up pharmacies and I am going to call one we have seen in the downtown tourist area and see if they have this product. I am very excited to try it. Fingers crossed. Have a healthy day all. Fondly, Mary Jo

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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The NAC was suggested by my doctor in Raleigh. I tried it last year and did not see a lot of difference. However, as stated, I think I did not take enough per day. So I am trying it again. I ordered to from Amazon. The Mayo doctor did not think it would be helpful, but would not hurt so I am trying again. Let's face it- we will try almost anything to try to get our old, normal life back! 🙂 Have a good day. Mary Jo

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@katemn Katherin, I just re-read the link in your posting about AMBROXOL/MUCOSOLVAN and realized that this drug is available in China! It comes in forms of syrup, tablets, and time-release capsules. But because this site is for health providers, I have no idea if I will need prescription to get it there. But I will definitely look into it when I go to China next spring.

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@ling123 Ling look on the MUCOSOLVAN https://www.boehringer-ingelheim.cz/volne-prodejne-pripravky/mucosolvan/mucosolvanr website and make SURE China is an accepted country to purchase from.. there are SO many bogus drugs out there today .. we have to be VERY careful! PLUS make SURE you go to a reputable pharmacy and ONLY deal with them .. we can't be too careful what we put in our bodies .. "Do no Harm" as the saying goes! As an example I am going to Portugal in September to get my annual supply .. BUT Portugal is listed on the manufacturer's website .. those countries are the ONLY ones I have ever purchased from .. just do your "Due Diligence". PLUS I am saying the drug worked so well for me when the doctor prescribed it for me for pneumonia in Geneva .. AND it has helped me now .. BUT each of our bodies are different .. keep that in mind! Good Luck! Hugs! Katherine

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@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@maryjo2sell, Mary Jo .. please read my warning/note to @ling Ling below .. it applies to all! Bogus drugs are all over! Be careful! Hugs to all! Katherine

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