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.

jasmine321 | @jasmine321 | Dec 30, 2019
In reply to @america "Lots of prayers for you!! Hugs" + (show)
@america

Lots of prayers for you!! Hugs

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Thank you @america. Your prayers and emotional support mean a lot to me.

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boomerexpert | @boomerexpert | Dec 30, 2019
In reply to @jasmine321 "Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will..." + (show)
@jasmine321

Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will remove my right middle and lower lobes. Had MAC in 2012 and 2018. When I was diagnosed with Bronchiectasis in 2012, my right middle lobe was affected. In 2018, infection went down further to my lower lobe. I am really scared. I don’t want to be on antibiotics the rest of my life and I don’t want the infection to eventually destroy my entire right lung that’s why I decided to go for the surgery. Surgeon will plan for VATS (laparoscopic) but there’s a 50% chance that he will do open surgery. Please keep me in your prayers.

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@jasmine321 don't be afraid...this must be done...face it with courage and grace!

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1 reply
heathert | @heathert | Dec 30, 2019
In reply to @jasmine321 "Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will..." + (show)
@jasmine321

Hoping for a speedy recovery @judyhodgern. I will have surgery on March 11, 2020. Surgeon will remove my right middle and lower lobes. Had MAC in 2012 and 2018. When I was diagnosed with Bronchiectasis in 2012, my right middle lobe was affected. In 2018, infection went down further to my lower lobe. I am really scared. I don’t want to be on antibiotics the rest of my life and I don’t want the infection to eventually destroy my entire right lung that’s why I decided to go for the surgery. Surgeon will plan for VATS (laparoscopic) but there’s a 50% chance that he will do open surgery. Please keep me in your prayers.

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@jasmine321 Wishing you all the best for your surgery and recovery in March. Please keep in touch. Take care Heather

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alleycatkate | @alleycatkate | Dec 30, 2019

@jasmine132 and @vetnyregr .... You are both in my thoughts and I wish you the very best outcome with your surgeries....Please keep us posted.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 31, 2019
In reply to @heathert "@anniepie yes I purchased from USA Pari. Here is the link about it, such a great..." + (show)
@heathert

@anniepie yes I purchased from USA Pari. Here is the link about it, such a great machine.
https://www.pari.com/int/products/inhalation-devices-for-the-lungs/eflowrrapid-nebuliser-system/
Yes I am off the meds and doing well . Take care Heather

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@heathert Yayyyyy!!!! Those are the words we love to hear! Happy New Year!!!

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1 reply
pamelasc | @pamelasc1 | Dec 31, 2019
In reply to @windwalker "@heathert Yayyyyy!!!! Those are the words we love to hear! Happy New Year!!!" + (show)
@windwalker

@heathert Yayyyyy!!!! Those are the words we love to hear! Happy New Year!!!

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Hello Terri and others – this is Pam in Sudbury, MA I have just met someone who has recently moved to the Boston area and she is dealing with some serious issues with her MAC. I told her I would reach out to my group at Mayo to see if any of you have any experience with the following:
She was diagnosed with MAC last year and began the 18 month treatment. But as of a few days ago, her doctor called to say that the MAC is still there (she has been on the meds for 12 months now). She knew something was not right as her lungs were really hurting, especially at night. She has never coughed with her MAC; she just has searing pain that moves around in her lung area. She thinks it is Intercellulari, but she is not 100% about that. The last test was sent to NJH. She says that nothing will make her cough ( she has tried saline, etc.) so she feels the infection is very deep. She is going to try the vest soon. While I help her find a new doctor here, she has no idea what she is supposed to do at this point. Here are my questions:
Has anyone had the MAC come back while taking the 18 month regimen of meds?
Has anyone had the symptoms she has with no cough but serious lung pain?
Can anyone suggest a new “route” to take? She is very scared. She has already signed up for a phone consult with Jewish. I would be most grateful if any of you can address my questions so that I can pass on something to give her hope. Thanks so much, Pam

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1 reply
irene5 Irene Estes | @irene5 | Dec 31, 2019
In reply to @pamelasc1 "Hello Terri and others – this is Pam in Sudbury, MA I have just met someone..." + (show)
@pamelasc1

Hello Terri and others – this is Pam in Sudbury, MA I have just met someone who has recently moved to the Boston area and she is dealing with some serious issues with her MAC. I told her I would reach out to my group at Mayo to see if any of you have any experience with the following:
She was diagnosed with MAC last year and began the 18 month treatment. But as of a few days ago, her doctor called to say that the MAC is still there (she has been on the meds for 12 months now). She knew something was not right as her lungs were really hurting, especially at night. She has never coughed with her MAC; she just has searing pain that moves around in her lung area. She thinks it is Intercellulari, but she is not 100% about that. The last test was sent to NJH. She says that nothing will make her cough ( she has tried saline, etc.) so she feels the infection is very deep. She is going to try the vest soon. While I help her find a new doctor here, she has no idea what she is supposed to do at this point. Here are my questions:
Has anyone had the MAC come back while taking the 18 month regimen of meds?
Has anyone had the symptoms she has with no cough but serious lung pain?
Can anyone suggest a new “route” to take? She is very scared. She has already signed up for a phone consult with Jewish. I would be most grateful if any of you can address my questions so that I can pass on something to give her hope. Thanks so much, Pam

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Yes and yes. Please have her contact Dr Mireya A Wessolossky at UMass in Worcester. (508 - 334- 5214). She is an excellent infectious disease doctor there. She works with Dr Gallant at UMass as well (pulmonologist) so everything is connected. (Irene5)

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1 reply
alleycatkate | @alleycatkate | Dec 31, 2019
In reply to @america "Lots of prayers for you!! Hugs" + (show)
@america

Lots of prayers for you!! Hugs

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@america...I hope your surgery and recuperation goes well! Best wishes for a healthy New Year!

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pamelasc | @pamelasc1 | Dec 31, 2019
In reply to @irene5 "Yes and yes. Please have her contact Dr Mireya A Wessolossky at UMass in Worcester. (508..." + (show)
@irene5

Yes and yes. Please have her contact Dr Mireya A Wessolossky at UMass in Worcester. (508 - 334- 5214). She is an excellent infectious disease doctor there. She works with Dr Gallant at UMass as well (pulmonologist) so everything is connected. (Irene5)

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Hello Irene - thank you for responding... can you give more information as to how you dealt with learning that your MAC was still there after a year of the Big Three regimen? What did you do at that point? And what did you do when you had the very strong pain in your lungs but had no cough? Were you able to resolve any of these issues? Pam

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1 reply
irene5 Irene Estes | @irene5 | Dec 31, 2019
In reply to @pamelasc1 "Hello Irene - thank you for responding... can you give more information as to how you..." + (show)
@pamelasc1

Hello Irene - thank you for responding... can you give more information as to how you dealt with learning that your MAC was still there after a year of the Big Three regimen? What did you do at that point? And what did you do when you had the very strong pain in your lungs but had no cough? Were you able to resolve any of these issues? Pam

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The pain in my chest has not been resolved. (Yet) It is very scary when it happens. The pain was so bad in early fall it was thought I had an aortic aneurysm, but thank the good God I did not. I’ve had sooo many tests. I do have severe spine issues which cause neurological symptoms. Acupuncture was suggested for pain, but my insurance doesn’t cover it. I can’t have spine surgery because the MAC has left me a tad too thin. I recently had a bronchoscopy and am waiting for the results. The MAC will still be there no doubt because the tests that did come back suggested “illness.” Presently, I am on the same regimen that Terri (our mentor) is on. (2nd year of that) Good nutrition and mindfulness are helpful. In terms of dealing with it, I guess I just take it one day at a time. I’ve cried. I’ve screamed. I’ve been angry because I had plans for my retirement. Mostly I am grateful I am still here. I do have tramadol for pain. I have a medical Marijuana card. I do not use it. I have never been a coughing gal. I don’t know if I have helped at all, but sometimes just knowing someone else has been in similar shoes and also has had that horrific chest pain and no cough is validating. I do not believe there is a cure for MAC. It can always come back after negative cultures. Hugs, irene

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