(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.

bruce668 | @bruce668 | Dec 17, 2016

In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)

@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

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Thanks very much and lets hope all of us have some better days ahead. I would like to ask, for my first two years of this disease i thought i was litterally going to die. But now , i still have the fatigue , lots of sputum , my bones hurt , sometimes my skin hurts and i dont feel well most of the time but my breathing has gotten much better . why would my breathing get any better without treatment ?

Katherine, Alumni Mentor | @katemn | Dec 17, 2016

In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)

@katemn

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@bruce668, Hello Bruce, gee I don't have a good answer for this .. can anyone jump in with any ideas? Hope someone has some thoughts! Just glad your breathing is better! Hugs! Katherine

heathert | @heathert | Dec 17, 2016

In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)

@katemn

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Hi Bruce, I found that my breathing improved when my anxiety was better, and got worse when I was more anxious, dont know if this applies to you or not but I am so pleased for you that it is much better!

bruce668 | @bruce668 | Dec 18, 2016

In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)

@katemn

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I feel that it has more to do with this disease because i had a couple lympnodes that were 1cm on its short axis and they have decreased in size but i still dont know why.

Katherine, Alumni Mentor | @katemn | Dec 18, 2016

In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)

@katemn

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@bruce668, Bruce, I can only speak from my experience with my husband's leukemia CLL .. WHEN his CLL has been worse his lymph nodes get bigger .. when his CLL is better his lymph nodes get small .. so that leads me to believe that SOMETHING in your body is better that the lymph nodes are smaller. JUST my hypothesis .. and why you are breathing better .. your body/immune system is fighting it off better?! Hugs! Katherine

heathert | @heathert | Dec 18, 2016

In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)

@katemn

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@bruce668 hopefully things maby improving for you, maby you could email your doctor and ask him/her, just email the receptionist if you can get her email and get her to forward it onto your doctor.

boomerexpert | @boomerexpert | Dec 18, 2016

In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)

@katemn

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When you find, and see, a competent doctor, that question will be answered, including what would be the right treatment for you (see other posts regarding specific treatments for specific strains of MAC/MAI). In the meantime, here's a few natural/herbal remedies I use to improve respiratory function: 1) Allertrex spray that can be found at http://www.globalhealing.com, and; 2) Breathe Right tea which can be found in most supermarkets and online (I find Amazon to be priced a bit higher for this product). I've also gotten a strong herbal remedy from my Oriental Medicine practitioner to complement the acupuncture I've been receiving which has also helped - I'll see how much when I get my next CAT scan in January.
Hope this is helpful, Bruce.

nannette | @nannette | Dec 20, 2016

In reply to @kaystrand "Someone asked the name of the test that determines inpart what your MAC is susceptible to..." + (show)

Kay, would you mind sharing the name of the nasal spray that you were given. I have the same thing but had the impedence test and it showed higher than normal reflux so I'm on 20mg of pantoprazole once a day but I believe I also have post nasal drip. And I had phlegm coming up to the throat also. The pantoprazole has helped but I think a nasal spray would help even more. And thanks for the info on the susceptibility panel. I'm in SC and I will ask my pulmonologist about this in January. Nan

maryjo2sell | @maryjo2sell | Dec 20, 2016

In reply to @maryjo2sell "Hello. My name is Mary Jo. I am new to the forum. I only discovered you..." + (show)

Thank you so much for the reply! I am waiting for 2017 health insurance to go through, then will call Mayo and Dr. Jack. It is so difficult to find a doctor who treats bronchiectasis. I am in Cocoa Beach, so it is only a couple hours to Mayo. I am so sad to leave my Duke doctor but they won't take the insurance anymore. If you can believe it in this day and age, he would reply to my email within hours when I was not feeling well. My second doctor in Florida had told me I had lung cancer and needed a pulmonary surgeon. This was in 2009. I called my allergist in North Carolina and she got me into Duke. Within 1 week I was told I had bronchiectasis with staph at the moment. This was such a relief to know what is wrong! (And not cancer!) I found a webpage last night with more MAC info and its connection to bronchiectasis. My son told me he read there are "hot spots" in Florida, and Philadelphia where they are researching a large number of cases of MAC and other mycobacterium. I will try to relocate the webpage and put it on the board here.It may be a repeat of what you all know, but sometimes there are a few new facts.
This is a wonderful forum. So glad I found it. Thank you again for the info!!!

Kay Strand | @kaystrand | Dec 20, 2016

In reply to @kaystrand "Someone asked the name of the test that determines inpart what your MAC is susceptible to..." + (show)

Nan
The nasal spray from Mayo does not have a name. They compound it in the Mayo pharmacy and it contains Mometesaone, Ipratropium and Diphenhydramine in equal parts. You mix it yourself and keep in in fridge. It's about $85 and lasts 5-6 months using 2 times per day's. It works great.
I still have some post nasal and throat clearing but it's better. I do not have reflux the Impedance test was negative. I do think that there is a bit of "bad habit" and stresss in throat clearing. Google nervous habit throat clearing.
Let me know if you get the spray, I think it will help if you have nasal inflammation which I do.

Kay S

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