1. < MAC & Bronchiectasis

(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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2017
In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)
@katemn

Dear All, where do I begin .. what do I say .. what can explain it all. I hardly know where to begin. Right now all I can say is thank you from the bottom of my heart. For so many things. First for being there all this time for EACH OTHER .. for the NEWCOMERS .. and from my heart I thank you for all the caring and support you sent me via your caring posts.

For OH so long I had such brain fog and extreme fatigue that all I did was lie in bed or sit in a chair. In time when I could not sleep for the coughing I would sometimes open my computer and know I did not have the energy to reply to posts but would scan them. As I saw all the wonderful .. caring .. concerned posts from my Connect Community .. I began to save them in a Word document .. copy/pasting your lovely supportive posts to me so I could reread when the times were bad. I labeled it " MAYO CLINIC CONNECT~POSTS WHEN I WAS SICK WITH PSEUDOMONAS ". I cannot tell you what those beautiful notes meant to me in the bad times .. I thank you one and all. We built this Connect Community together .. and oh how wonderful it is.

I go to Mayo Clinic May 9 to see Dr. Dulohery. I am SO anxious to understand what happened to my body .. WHY I was the sickest I have ever been in my life. WHY they are only treating one of the three bacteria diagnosed. SO many questions I have. BUT I will say .. after 9 days of inhaled Tobramycin 2x per day (a pain in the batooty with all the preparation and sterilization!!) I am now sleeping most of the night with less coughing .. AND have little brain fog .. PLUS have energy for about 6 hour per day!! YEAH!!

I have such an attitude of gratitude!! Next week it is Mayo Clinic AND packing for my youngest granddaughter's college graduation for which we depart May 18 and get back the following week. SO .. I REALLY hope to have the mental and physical energy to be back to my WONDERFUL community of Mayo Connect later in the week of May 22 .. hopefully with some insights with what some things I have learned about this Pseudomonas journey. I have GREATELY missed you all .. you have become a BIG part of my life .. like a family .. I will be very glad to be back! With many hugs and gratitude that you are in my life! Katherine

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<br><br><br><br><br>Hi Katherine. We are all dying to know what you learn on the 9th. I hope <br>and pray that new Dr can get you squared away. - Terri<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2017
In reply to @katemn "Dear All, where do I begin .. what do I say .. what can explain it..." + (show)
@katemn

Dear All, where do I begin .. what do I say .. what can explain it all. I hardly know where to begin. Right now all I can say is thank you from the bottom of my heart. For so many things. First for being there all this time for EACH OTHER .. for the NEWCOMERS .. and from my heart I thank you for all the caring and support you sent me via your caring posts.

For OH so long I had such brain fog and extreme fatigue that all I did was lie in bed or sit in a chair. In time when I could not sleep for the coughing I would sometimes open my computer and know I did not have the energy to reply to posts but would scan them. As I saw all the wonderful .. caring .. concerned posts from my Connect Community .. I began to save them in a Word document .. copy/pasting your lovely supportive posts to me so I could reread when the times were bad. I labeled it " MAYO CLINIC CONNECT~POSTS WHEN I WAS SICK WITH PSEUDOMONAS ". I cannot tell you what those beautiful notes meant to me in the bad times .. I thank you one and all. We built this Connect Community together .. and oh how wonderful it is.

I go to Mayo Clinic May 9 to see Dr. Dulohery. I am SO anxious to understand what happened to my body .. WHY I was the sickest I have ever been in my life. WHY they are only treating one of the three bacteria diagnosed. SO many questions I have. BUT I will say .. after 9 days of inhaled Tobramycin 2x per day (a pain in the batooty with all the preparation and sterilization!!) I am now sleeping most of the night with less coughing .. AND have little brain fog .. PLUS have energy for about 6 hour per day!! YEAH!!

I have such an attitude of gratitude!! Next week it is Mayo Clinic AND packing for my youngest granddaughter's college graduation for which we depart May 18 and get back the following week. SO .. I REALLY hope to have the mental and physical energy to be back to my WONDERFUL community of Mayo Connect later in the week of May 22 .. hopefully with some insights with what some things I have learned about this Pseudomonas journey. I have GREATELY missed you all .. you have become a BIG part of my life .. like a family .. I will be very glad to be back! With many hugs and gratitude that you are in my life! Katherine

Jump to this post

<br><br><br><br><br>Sorely missed, I might add!<br> <br><br>

REPLY
tay4rake | @tay4rake | May 9, 2017

Very interesting article, thanks for passing along. Have filed article for future reference, hope I won't need it, but you never know.

REPLY
mac47 | @mac47 | May 9, 2017

Dx in January with MAC, on three antibiotics, 3 x/ week. Last Ct in March showed no bronchiectasis, some infiltrates had gone but a new nodule had appeared in right upper lobe. Weight loss significant. No cough. My ID doc was concerned and thought a second opinion was appropriate. Trying to get in to see Dr. Aksamit @ Mayo, Rochester. Decided against NJH's 10 day stay. Weight loss is significant.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 9, 2017
In reply to @mac47 "Dx in January with MAC, on three antibiotics, 3 x/ week. Last Ct in March showed..." + (show)
@mac47

Dx in January with MAC, on three antibiotics, 3 x/ week. Last Ct in March showed no bronchiectasis, some infiltrates had gone but a new nodule had appeared in right upper lobe. Weight loss significant. No cough. My ID doc was concerned and thought a second opinion was appropriate. Trying to get in to see Dr. Aksamit @ Mayo, Rochester. Decided against NJH's 10 day stay. Weight loss is significant.

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Hi @mac47, welcome to Connect.
I moved your intro message to the main discussion thread in the MAC group so you can meet all the members. I know @tdrell @lindam272 @lindam272 @irene5 @windwalker and the others will join me in welcoming you. There's a treasure trove of valuable information in this discussion and all the discussions in the groups. I encourage you to read through the posts.

How are you coping with the side effects of treatment? What questions might you have for the group?

REPLY
mac47 | @mac47 | May 9, 2017

Other than a little fatigue, I've gotten over some of the earlier symtoms(diarrhea, insomnia). Both my ID doc & myself are concerned that after 4 months of drug therapy, i'm still growing nodules in my right upper lung. I feel so frustrated about the lack of sound information on this disease. The fickle nature of the disease-who gets it, how it progresses, the length& debilitating nature of treatment- AND high reinfection rates! I'm overwhelmed. Hoping to get an appointment with Dr Askamit@ Mayo, Rochester. I need someone who has a lot of hands on experience with this.

REPLY
3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2017
In reply to @mac47 "Dx in January with MAC, on three antibiotics, 3 x/ week. Last Ct in March showed..." + (show)
@mac47

Dx in January with MAC, on three antibiotics, 3 x/ week. Last Ct in March showed no bronchiectasis, some infiltrates had gone but a new nodule had appeared in right upper lobe. Weight loss significant. No cough. My ID doc was concerned and thought a second opinion was appropriate. Trying to get in to see Dr. Aksamit @ Mayo, Rochester. Decided against NJH's 10 day stay. Weight loss is significant.

Jump to this post

<br><br><br><br><br>Hello and welcome mac47!  - Terri M.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2017
In reply to @mac47 "Other than a little fatigue, I've gotten over some of the earlier symtoms(diarrhea, insomnia). Both my..." + (show)
@mac47

Other than a little fatigue, I've gotten over some of the earlier symtoms(diarrhea, insomnia). Both my ID doc & myself are concerned that after 4 months of drug therapy, i'm still growing nodules in my right upper lung. I feel so frustrated about the lack of sound information on this disease. The fickle nature of the disease-who gets it, how it progresses, the length& debilitating nature of treatment- AND high reinfection rates! I'm overwhelmed. Hoping to get an appointment with Dr Askamit@ Mayo, Rochester. I need someone who has a lot of hands on experience with this.

Jump to this post

<br><br><br><br><br>You are right about that. We all need to be seeing knowledgeable drs when <br>dealing with this disease.<br> <br><br>

REPLY
tessie | @tessie | May 10, 2017

@windwalker I have switched to drink natural spring bottled water instead of tap. In regards to shower heads with regular cleaning, I do not put my face underneath although I realize spray is difficult to avoid. Fitness clubs are very questionable. Damp soil also maybe the culprit. We have many parks with gardens here in Toronto. No guarantee I won't MAC relapse but I have successfully completed medication. Onward.

REPLY
1 reply
boomerexpert | @boomerexpert | May 10, 2017
In reply to @mac47 "Other than a little fatigue, I've gotten over some of the earlier symtoms(diarrhea, insomnia). Both my..." + (show)
@mac47

Other than a little fatigue, I've gotten over some of the earlier symtoms(diarrhea, insomnia). Both my ID doc & myself are concerned that after 4 months of drug therapy, i'm still growing nodules in my right upper lung. I feel so frustrated about the lack of sound information on this disease. The fickle nature of the disease-who gets it, how it progresses, the length& debilitating nature of treatment- AND high reinfection rates! I'm overwhelmed. Hoping to get an appointment with Dr Askamit@ Mayo, Rochester. I need someone who has a lot of hands on experience with this.

Jump to this post

@mac47 use this link to find a doc recommended by ntminfo.org as best informed on the infection: https://www.ntminfo.org/patients/physician-referral-list

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