(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

@ckscoville

Thanks very much for the recommendations. Actually my Infectious Disease doctor had suggested a change to 7% saline in my nebulizer (from 3%), but my Pulmonary doctor at Mayo wanted to keep it at 3%, saying that he typically only prescribed 7% for Cystic Fibrosis patients.

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@ckscoville Here is a link you might like to share that talks about the use of higher percentage saline in non-CF patients, and the potential effect on MAC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6688147/

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@sueinmn

@ckscoville Here is a link you might like to share that talks about the use of higher percentage saline in non-CF patients, and the potential effect on MAC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6688147/

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Thanks so much for the link! I'll bring the subject up again with my pulmonary specialist and see if he'll agree to the switch.

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@ckscoville

Thanks very much for the recommendations. Actually my Infectious Disease doctor had suggested a change to 7% saline in my nebulizer (from 3%), but my Pulmonary doctor at Mayo wanted to keep it at 3%, saying that he typically only prescribed 7% for Cystic Fibrosis patients.

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There was a study done at NIH that proved it took the full 7% saline to successfully kill mycobacterium avium complex. I have posted it here in the past for folks to print it out to show their doctors. It is a chart that shows what % of saline kills a specific organism. I know Mayo doctors to be among the the very best because I have been going to Mayo for treatment since 2013. The pulmonologist that turned my mac negative since 2014 retired last year. He did not use the typical Big 3 antibiotics, but rather something less toxic but for a longer period of time. It worked, but when I discussed it with the pulmonologist that replaced him, she disagreed with it. So you see, drs can have varying views. I will see if I can locate that chart for you.

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@ckscoville

Thanks so much for the link! I'll bring the subject up again with my pulmonary specialist and see if he'll agree to the switch.

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Scroll past the first few paragraphs and you will see the charts. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/

Liked by lorifilipek

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@kathyhg

Thanks; I’ll check it out.

I’m not on antibiotics because of side effects and have been controlling (and reducing) my symptoms with 7% saline nebulizing 2/day, diet, exercises, mindfulness (which I think helps), etc. Nausea was a frequent problem in my early Mac days and periodically comes back so I keep fresh ginger as well as Gravol ginger in the house for bad days.

Another plug for 7% saline – my sputum came back at 4+ after 6 months on the big 3 and has gradually moved down to 1+ and even negative on my last sputum test,

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kathyhg, OMG! That is amazing!!! So happy for you.

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@kathyhg

Can you give more information on breathe easy tea? What is it supposed to help with and does it work well? I’m always looking for alternatives to taking more pills. Thanks,

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kathyhg This tells some of what is in the tea, the licorice root is what really works to open airways. I lived on this tea when I was so sick with mac. I would feel like an elephant was sitting on my chest, and this tea would ease that feeling, plus quite my cough. https://www.traditionalmedicinals.com/articles/tea/a-peek-inside-breathe-easy/

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@windwalker

@auntnanny what is the exact labeling on the saline you purchase from Amazon. I would like to look it up. Thanks!

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I would like to know also about the saline. Thank you

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@windwalker

kathyhg This tells some of what is in the tea, the licorice root is what really works to open airways. I lived on this tea when I was so sick with mac. I would feel like an elephant was sitting on my chest, and this tea would ease that feeling, plus quite my cough. https://www.traditionalmedicinals.com/articles/tea/a-peek-inside-breathe-easy/

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Where do you buy licorice root?

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@mrf5629

Where do you buy licorice root?

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Hello Beth! Welcome to our group. I do not know about buying straight up pure licorice root, but it is a helpful ingredient in 'Breathe Easy' tea by Traditional Medicine. I buy mine at Kroger's, a local grocery store, in the natural food isle. I requested to the manager to carry it, and he did. You can order it online also. Another product that other members swear by is 'Clear Lungs' can order that online from Amazon, etc. Licorice root has been used for thousands of yrs by Chinese doctors and medicine men. When I was at my sickest, it was the tea that helped with the symptoms; especially the tightness in my chest. Let me know if you try it and what you think.

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@sharonp51

I would like to know also about the saline. Thank you

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Hi Sharon. Please look at the top of this page. You should see an magnifying glass icon, click on it and a box will open, type in 7% saline and you will see many conversations about it. Good place to get info! Most members in this group are now using the saline, and seeing improvement in their lungs and feeling better. Many drs are still not aware of it's use, so sometimes you have to mention it to them.

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@mrf5629

Where do you buy licorice root?

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@mrf5629 Beth, I have a bottle of licorice root made by Nature's Way. It says 100 vegan capsules. I take it three weeks on, three weeks off from the recommendation by my functional medicine doctor. He says it's like a natural steroid. I've only taken it for three weeks so far and am in the three week off period. We're hoping it will work to decrease the inflammation in my throat and trachea area. Nan

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Please keep us updated on how it works on the inflammation! Thanks

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Thank you Nan. So you are taking it in capsule form, rather than in a tea? That makes sense. Do you experience any side effects from it? I know that might be a difficult question. I'm very new to this and basically ignorant of all options! Just trying to overcome the terrible, scary coughing fits and the feeling that my life as I knew and loved it is over. My coughing is so strenuous that I actually get zaps of nerve pain up my back or in my arms while coughing and have a constant headache from coughing, which I never had previously. I feel such a fool for not having appreciated my good health before November 2019.

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@windwalker

Hello Beth! Welcome to our group. I do not know about buying straight up pure licorice root, but it is a helpful ingredient in 'Breathe Easy' tea by Traditional Medicine. I buy mine at Kroger's, a local grocery store, in the natural food isle. I requested to the manager to carry it, and he did. You can order it online also. Another product that other members swear by is 'Clear Lungs' can order that online from Amazon, etc. Licorice root has been used for thousands of yrs by Chinese doctors and medicine men. When I was at my sickest, it was the tea that helped with the symptoms; especially the tightness in my chest. Let me know if you try it and what you think.

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Thank you Terri. I don't think we have a Kroger's nearby but I will check it out. I have bought licorice tea from the local Hy
Vee store, and see licorice root is the top ingredient but not sure of the concentration.

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@mrf5629

Thank you Nan. So you are taking it in capsule form, rather than in a tea? That makes sense. Do you experience any side effects from it? I know that might be a difficult question. I'm very new to this and basically ignorant of all options! Just trying to overcome the terrible, scary coughing fits and the feeling that my life as I knew and loved it is over. My coughing is so strenuous that I actually get zaps of nerve pain up my back or in my arms while coughing and have a constant headache from coughing, which I never had previously. I feel such a fool for not having appreciated my good health before November 2019.

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@mrf5629 Beth, yes, I take it in capsule form and bought it a vitamin shoppe right near my doctor's office. I, too, have a had a terrible cough for two and a half years and I, also, decided to take the problem into my own hands because NEITHER of the two pulmonologists seemed to care about my cough at all. I got it with the 2018 flu that almost killed me. So I decided to do what Daniel Pecaut did in his book, Beating Bronchiectasis, gathered up my own team and tried to do most of the things that he did in his book but I didn't do all of them. I did go to an acupuncturist for a year to see if that would help with the cough. It didn't really but it might have helped in other ways. I then found a functional medicine doctor which I now wish I had done years ago. They're doctors, generally, but have added integrative, and alternative solutions to problems. They look at the WHOLE patient not just the symptoms. Anyway, went to this wonderful doctor and he started with allergies and it turns out I'm allergic to everything….trees, grasses and weeds. He was right in that he thought this might be an exacerbation of sorts to the cough. So I've been giving myself allergy shots for a year now, as well as exercise five days a week for at least 30 minutes and am taking other supplements, too. And at my last CT scan which was a month ago (the first one in two years), the nurse practitioner looked at it (because I hardly ever see the real doctor who's the specialist for bronchiectasis) and said "there's no progression"! and then she said "whatever you're doing, keep doing it." So, not to knock the western medicine doctors but the past two years I've have been totally on my own trying to figure out this lung disease and coughing. I didn't succeed like Daniel Pecaut (yet) but I've had no progression and I consider that a win! I also do the saline solution just about everyday (that I learned from this forum. My local pulmonologist didn't really prescribe it but I made him find it and give me a prescription. And then I nebulize with glutathione almost every day (it's not cheap). My pulmonologist would not help me with that either. When I asked him about he kind of rolled his eyes and said "oh that's the stuff you get at the health food store". Well glutathione happens to be the single most important antioxidant in the human body says my functional medicine doctor and he gives me the vial of glutathione that I mix with my saline solution. So I can't pinpoint what exactly gave me 'no progression' but I think it's probably a combination of a lot of things just like Daniel Pecaut. And Daniel Pecaut had a Mayo doctor who stuck with him through his year of non-western medicine journey which I think is so admirable. And he looked at Picauts CT scan at the end of his year and gave him the results. Complete reversal. So I might not be there yet but I'm sure as hell working on it. Sorry to ramble but I wanted to let you know there's hope sometimes in all of this mess but you really and truly do have to be your own advocate. There is no question. Western medicine is a great thing but it's not the be all and end all. I think you have to mix in alternative and integrative therapies. And the cough is still not completely gone but I'm not giving up. One day I will get rid of it. Nan

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