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(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.

Profile picture for irene5 Irene Estes
irene5 Irene Estes | @irene5 | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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Totally agree with that! When I find myself saying "Well, maybe it was this or maybe it was that" - I then just say to myself "Stop it! Stop it right now!" 🙂 Irene

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chinasmom | @chinasmom | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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@irene5, you are so smart and funny too! Reading your posts are really uplifting and light hearted. "And the plot sickens! " I actually laughted outloud then had a spontanious coughing fit as onething seems to lead to another. So thank you for helping me clear my lungs! Hope you have a great day!
Becky

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Profile picture for irene5 Irene Estes
irene5 Irene Estes | @irene5 | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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My pleasure!:)

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Terri Martin, Volunteer Mentor | @windwalker | Apr 3, 2017
In reply to @katemn "Need lots of help Posted by @shiell in MAC & Bronchiectasis, 1 hour ago I introduced..." + (show)
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Need lots of help
Posted by @shiell in MAC & Bronchiectasis, 1 hour ago
I introduced myself and problem a few weeks ago. I don't think I had reached the occurrence yet that I am writing about today. I had a six month visit with my pulmonologist and he ordered a sputum test because I complained of coughing more. Sadly the result was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help

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Dear @shiell .. (and @windwalker, @tay4rake, @luvocean, and others dealing with Pseudomonas) I hope you don't mind but I am moving your post to an area where there are others dealing with Pseudomonas .. I am hoping you will receive more help there. I remember you are the caretaker for your husband so this must be a tough time for you.

I can only speak for myself. I was diagnosed with Pseudomonas 3/7/17. My Pulmonologist, Dr. Timothy Aksamit at Mayo Clinic, Rochester MN prescribed Cipro 500mg 2x per day for 28 days with the understanding that if that did not stabilize the Pseudomonas .. then we would do the Toby 28 days on .. 28 days off for a 3 time cycle. You might ask your Pulmonologist IF this might be an option for you? Sending you Hug and positive energy in this tough time! Katherine

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<br><br><br><br><br>I do not recall what his reaction was, I know that for most people it is a <br>sore throat. I experienced a bad sore throat and hoarseness for the first two <br>weeks. I acclimated to it and now look forward to my bi-monthly treatment. My <br>lungs are crystal clear when I am on it.<br> <br><br>

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lbigboy | @lbigboy | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

Yes, the only meds I was taking was for the MAC. I had a hard time tolerating the MAC meds, my doctor cut me back as much as was recommended and then when the Liver count was so high he stated that if I had to go back on the meds it would be best if CDC monitored it the next time around. The ganglion's appeared after I began the meds on three different fingers.

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Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

<br><br><br><br><br>Katherine is absolutely right. I adhere to a healthy lifestyle, exercise, <br>pay attention to nutrition, don't stress, follow doctor's treatment plan to a <br>tee. Here lately, I do not even think about MAC. I live like I am perfectly <br>fine. It is good to learn all that you can about your disease, just don't let it <br>consume you. Terri M.<br> <br><br>

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Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

<br><br><br><br><br>This was an interesting read. Thank you.<br> <br><br>

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Profile picture for lbigboy
lbigboy | @lbigboy | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

Thank you Katherine for your response. You are totally right regarding letting go of what we cannot control. My husband and I chose JOY in the midst of our circumstances. Linda

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Profile picture for lbigboy
lbigboy | @lbigboy | Apr 3, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

Thank you Irene for your response. It helps to know that others have similar issues and what the diagnosis are. I have an open ganglion that i am trying to get treatment for and with the ganglion diagnosis only, the insurance won't allow treatment. Have a blessed day! Linda

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ilgrp4e | @ilgrp4e | Apr 3, 2017
In reply to @katemn "@donut Sent on Thu, Mar 23, 2017 at 9:21 am March 1, 2017 I visited Dr...." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

@donut
Sent on Thu, Mar 23, 2017 at 9:21 am

March 1, 2017 I visited Dr. Aksamit ...a message I want to get out is that he is the very best!! Anyone needing help go to him at Rochester Mn. Also, I apologize for long delay have been trying to work and rest you guys know the way it is...Uckkk....But God willing we all will get past this. I ordered the book "Beating Bronchiectasis"by Daniel Pecaut. I read it in one night. WOW...was I impressed!! I couldn't put the book down. I wish I could tell him how he has inspired me to carry on. This has been a horrific journey and I want to succeed. If you want to understand more the book is only a little over $3 plus shipping and worth the investment. I just ordered the "Expand-A-Lung' one for me and one for my momma. This I will let you all know as soon as possible...how it works for me. I love you all so very much.. Donna
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@donut Donna, I really apologize for not answering sooner .. my husband was ill ..in the hospital .. AND for some reason your email went into my "Spam" file which I don't check that often .. goofy! I hope you don't mind but I am moving your post to the Main MAC page so others can see your positive attitude and what a great experience you had at Mayo!

My husband's best friend has developed MAC (not as many men get it) .. I recommended the 'Expand-A-Lung' .. and he just LOVES it .. uses it several times a day! So glad it is working for you .. anything we can do to help increase our lung capacity .. YEAH! Donna, keep us posted on your progress .. good to hear from you! Hugs! Katherine

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I just got the book too.. excited to read it to help my mom 🙂
Carmen

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