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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

anr38 | @anr38 | May 4, 2017
In reply to @megan123 "I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new..." + (show)
@megan123

I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new bud tree nodules. Does this mean my NTM is active??? My oulmonary guy never explains anything. In process of a second opinion. Have minimal symptoms of Mac. Little sputum, no cough. Have been getting some nite sweats but not sure if it's menopause. help...

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May i ask, where or how do you find the National Jewish video's via this website? thanks angie 🙂

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 4, 2017
In reply to @megan123 "I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new..." + (show)
@megan123

I have Bronchiectasis and NTM Mac. Recently had a cat scan and it showed some new bud tree nodules. Does this mean my NTM is active??? My oulmonary guy never explains anything. In process of a second opinion. Have minimal symptoms of Mac. Little sputum, no cough. Have been getting some nite sweats but not sure if it's menopause. help...

Jump to this post

Hi @anr38, welcome to Connect.
You can find the videos and other useful resources here: - Videos, Articles and Resources about NTM or MAC and treatments http://mayocl.in/2pZDzR0

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 4, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

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<br><br><br><br><br><br> Hello Ling! Wondering how you are doing these days? - Terri M.

REPLY
ling123 | @ling123 | May 4, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

Jump to this post

Hi Terri, thanks for thinking of me. I'm in Beijing, China visiting family. Will be here until right before Memorial Day. I'm not on the Internet everyday. But I do check from time to time. I'm well. No health concerns. Hope you are as well.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 4, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

Jump to this post

<br><br><br><br><br>Ni hao ma, Ling! Good to hear from you. Wow!  Beijing, I would love to <br>visit there some day. So relieved that you are doing fine. Thank you for <br>checking in!  - Terri M.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 5, 2017
In reply to @katemn "Dear All, am I the only one who HATES to shop .. hates to know what..." + (show)
@katemn

Dear All, am I the only one who HATES to shop .. hates to know what they want to buy but cannot find.. hates to go to 4 different stores and STILL can't find what they want .. feel guilty not to buy locally BUT LOVE just finally giving up and in minutes finding it on Amazon Prime? Well if you are in my category .. today as I made my final purchase .. I saw all these notes that I thought I'd share. I have donated to NTM as my charity for a long time .. every little bit helps .. especially if everyone on our Forum added NTM to their Amazon accounts? Just a thought! Hugs to all! Katherine

**I just supported NTM Info & Research, Inc. at AmazonSmile. I shop. Amazon gives.
When you shop at AmazonSmile, Amazon donates to the charitable organization of your choice. Who will you support?
You made a difference.

**Because you placed this order at smile.amazon.com, Amazon will make a donation to NTM Info & Research, Inc..
Your purchases have supported charity 240 times by starting at smile.amazon.com.

**See your impact
Get donation information and learn about your charity
See your AmazonSmile impact

**Your current charity
**Change charity
NTM Info & Research, Inc.
Location: Coral Gables, FL | Year Founded: 2003
Mission: NTMir's mission is to save and improve lives by promoting support, research, education, early detection, and improved treatment programs for those with pulmonary NTM disease.
Programs: Rapid Information Pilot Studies (RIPS), Joint Research, Patient/Physician Meetings

https://www.amazon.com/gp/help/customer/display.html?nodeId=201365360

Jump to this post

OMG! JUst saw this! Of course we will sign up for Amazonsmile. I did not know it even existed. My hubby shops amazon a lot. Will def pass this tidbit on to him. Thank you, Katherine.

REPLY
jewel8888 | @jewel8888 | May 7, 2017
In reply to @katemn "Dear All, I apologize for not connecting with you sooner but I have been very ill...." + (show)
@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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Katherine, i was suprised to read how quickly you have become more ill. Yor. Your news about being so weak breaks my heart. My prayers for you, best wishes and hope you are a bit since you last wrote.

New medications can really help but they can give us those darn side effects, im so sorry. Please let me know if you are suffering from tendon pains that may be making you weak. I had a similar problem you might remember, with taking otezla, a similar reaction to those who experience on cipro and floroquinalone type antibiotics. I was able to get better, slowly but surely and will be praying you get thru this soon.

There is a really great support group on Facebook if you want me to recommend.

Julie

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Katherine, Alumni Mentor | @katemn | May 7, 2017

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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12 replies
lindam272 | @lindam272 | May 7, 2017

Katherine, I got teary eyed reading your post! I am so glad to see you back - or almost back. Every day I looked for your posts and when I didn't see any I just prayed for you to get better. We missed you so much. I know if anyone will get to the bottom of your treatment, you will. You will ask the tough questions and put that information to good use on this connect group. Godspeed on your trip to see your granddaughter graduate. I pray that you will have the strength to enjoy your visit. I look forward to seeing your posts when you return. Blessings, Linda

REPLY
decosmo | @decosmo | May 7, 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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Katherine, my heart aches for you. I am praying that you regain your energy and find answers next week. Six hours of energy is moving in the right direction right? You'll be at 12 before you know it. I will be at the Mayo on May 12th. Hoping for some answers myself. Lots of positive energy heading your way. Rosie

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