(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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!!!

Liked by anniepie

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@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

Liked by anniepie

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@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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@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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@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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@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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@irene5

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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Irene – thanks so much for sending more information. I will pass this on to my friend Bonnie, who will be joining us at some point. (I have to show her how to navigate the system.) I am so sorry for all that you have gone through with this; I do know that Bonnie will find some comfort in knowing she is not the only one with these sorts of symptoms. Are the doctors you mentioned ones you have worked with? If anyone else has anything else to offer on my questions, I would greatly appreciate hearing from you. Thanks so much, Pam

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@pamelasc1

Irene – thanks so much for sending more information. I will pass this on to my friend Bonnie, who will be joining us at some point. (I have to show her how to navigate the system.) I am so sorry for all that you have gone through with this; I do know that Bonnie will find some comfort in knowing she is not the only one with these sorts of symptoms. Are the doctors you mentioned ones you have worked with? If anyone else has anything else to offer on my questions, I would greatly appreciate hearing from you. Thanks so much, Pam

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They are my present doctors Pam. They are both caring and knowledgeable physicians. I am not very computer literate. I don’t even have Facebook (my ten children and thirteen grandchildren (seemed like a good idea at the time) keep me up to date, and are the Facebook police for each other. Trust me – if I can navigate this site, (I’m 70), your friend Bonnie will be able to do it as well. Irene

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Hi all. I was wondering if anybody had info on Iron, I read somewhere not to take iron supplements, are we not meant to eat iron foods either. I am vegetarian and often need iron supplements. Not sure what to do. Thanks Heather

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Thank you @alleycatkate. Yes, will keep you posted.

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@heathert

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

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Thank you @heathert. I’ll keep you posted.

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@boomerexpert

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

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Thank you @boomerexpert. I really appreciate everyone’s encouragement and prayers. They lift up my spirits every time I start feeling low.

Liked by anniepie

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@heathert

Hi all. I was wondering if anybody had info on Iron, I read somewhere not to take iron supplements, are we not meant to eat iron foods either. I am vegetarian and often need iron supplements. Not sure what to do. Thanks Heather

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Hi Heather @heathert, the research on iron supplementation and mycobacterial growth has been contradictory. More of the research has been done in Africa with populations regularly having high iron loads in their diets, and even overloading of dietary iron on a frequent basis. in those studies, people tended to have poorer outcomes with mycobacterial infections.
Some other studies have found conflicting results — iron supplementation even during TB had no effect on the mycobacterial burden in the lungs.
However, recent research with other populations found that if you routinely have low levels of iron in your diet, and have had some degree of anemia — for example many vegetarians — then supplementation with iron has no effect on increasing mycobacterial growth.
So if you continue to be a vegetarian, you should be safe to take iron supplements.
(See "Iron Supplementation Therapy, A Friend and Foe of Mycobacterial Infections?", R. Agoro and C. Mura, 2019 — Pharmaceuticals 2019, 12, 75; doi:10.3390/ph12020075 http://www.mdpi.com/journal/pharmaceuticals).
Hugs, Annie

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@anniepie

Hi Heather @heathert, the research on iron supplementation and mycobacterial growth has been contradictory. More of the research has been done in Africa with populations regularly having high iron loads in their diets, and even overloading of dietary iron on a frequent basis. in those studies, people tended to have poorer outcomes with mycobacterial infections.
Some other studies have found conflicting results — iron supplementation even during TB had no effect on the mycobacterial burden in the lungs.
However, recent research with other populations found that if you routinely have low levels of iron in your diet, and have had some degree of anemia — for example many vegetarians — then supplementation with iron has no effect on increasing mycobacterial growth.
So if you continue to be a vegetarian, you should be safe to take iron supplements.
(See "Iron Supplementation Therapy, A Friend and Foe of Mycobacterial Infections?", R. Agoro and C. Mura, 2019 — Pharmaceuticals 2019, 12, 75; doi:10.3390/ph12020075 http://www.mdpi.com/journal/pharmaceuticals).
Hugs, Annie

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Good luck to everyone in 2020! Let's hope for the best
Annie

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@jh

I was dx’d with MAC in 1998. During the diagnosis process I was subsequently infected with another more serious infection during a bronch.
I was on 3 to 6 antibiotics for 8 years. After 2 years I no longer tested positive (sputum) for the MAC.

After surgery to remove the lobe with the other, more serious infection, I have neither.

Good nutrition, daily EXCERCISE via workouts on my tread mill to keep lungs clear, have been key. Basically, I never let it interfere with my life. Yes, sometimes I was tired particularly after my morning ‘cocktail’ of meds, but my husband was good at gently coaxing me on, and I would eventually get over the ‘hump’ and enjoy an active day.

Also key, get an adjustable bed. They are expensive, but necessary so that you don’t sleep flat, I waited years, and found I should have followed my Dr.s instructions immediately. Also, eat light at night.

but really, the huffing, puffing excersize 4 days a week, keeps the lungs clear and seems to have been (and still is) my biggest help other than the meds.

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Thanks for sharing. My wife has MAC and had been treated with 3 different times of antibiotics and was well. After 2 years we stopped and unfortunately the bronchocopy shows MAC after 4 months. Doctor put her again on the same 3 antibiotics with a possibility of surgery. Where we could such a surgery please . We are living in Dibai UAE. Thank you and god bless you

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