(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.

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

REPLY

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

REPLY
@windwalker

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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Hello. I asked about it and was prescribed 3%. At least that’s a start !

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@mrf5629

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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Beth - In my area it is available in the tea aisle at Walmart, of all places. The companion, if you are on antibiotics & suffering nausea, is their ginger tea. I alternated between the 2 for 2 years! Finally got cool enough to start brewing Breathe Easy for my afternoon break - just put some in my "Grandma Bag" to take to my daughter's, where I provide kid wrangling while she works from home.
Sue

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@sueinmn

Beth - In my area it is available in the tea aisle at Walmart, of all places. The companion, if you are on antibiotics & suffering nausea, is their ginger tea. I alternated between the 2 for 2 years! Finally got cool enough to start brewing Breathe Easy for my afternoon break - just put some in my "Grandma Bag" to take to my daughter's, where I provide kid wrangling while she works from home.
Sue

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Hi Sue! Don't you l
just love that Breathe Easy tea? I do!! It is always in my suitcase, I don't leave home without it.

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@sharonp51

Hello. I asked about it and was prescribed 3%. At least that’s a start !

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Hi Sharon. I am glad that you got the 3% saline. Why was your dr not willing to do the 7%?

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@nannette

@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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That was excellent Nan! I agree with all that you stated. Your determination will surely get you to your goal. The mind is a powerful tool. Who is this functional medicine dr you see? Is this dr local? BTW, it was wonderful seeing you last week. Love your store!!

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@mrf5629

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.

Jump to this post

Beth, just be careful of the strength of the licorice root that you use; it can cause high blood pressure.

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