1. < MAC & Bronchiectasis

Natural remedies for MAC

Posted by med08 @med08, Sep 30, 2022

Some have posted they use Chinese herbs and acupuncture to help with MAC. Which herbs and what part of body do you get acupuncture and for what specifically?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

malambrit | @malambrit | Feb 23 10:49am
In reply to @lilianna "Malambrit, do you still go to Mayo and do you have an assigned doctor there? I..." + (show)
@lilianna

Malambrit, do you still go to Mayo and do you have an assigned doctor there? I think usually after 6 months not converting, the doctors add or change meds. I would suggest contact Mayo through email, if they gave you your medications and ask how to proceed. I don’t know what state you live in so also look around in your state or around. I know it’s frustrating, not easy when you are tired, and wish your day ended at 6pm and you could sleep, if you can.

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I went to the Mayo almost a year after diagnosis and had already been on the meds. I met with Dr Baig 1st via zoom. He scheduled a full day of test at the campus and I then had another appt via zoom with him and Dr Bosh, IDD. They recommended I also have local care. It is crazy that here locally, there is such a shortage of Pulmonary care. I live in Crestview, FL. I tried to send a message through my portal, but plan on calling tomorrow to get scheduled back with Dr Baig. Thank you so much for the response!

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blm1007blm1007 | @blm1007blm1007 | Feb 23 1:36pm
In reply to @malambrit "Hi Barbara, Thank you for the detailed reply. I am not familiar with MAI. I replaced..." + (show)
@malambrit

Hi Barbara, Thank you for the detailed reply. I am not familiar with MAI. I replaced my very old hot water heater. I don't wear a mask but wet down the soil before working in the garden. The 90/10 is I eat clean 90%. I don't eat processed foods except for very clean protein powder, protein bars. I make sourdough bread and it is white flour, I eat a slice most every day and I have a glass of wine most every night. I have a fairly new shower head but need to do better with cleaning / replacing. I have shortened my showers dramatically which pains me, my shower ritual was a great relaxer for me, an escape of sorts. Like you, I don't really have any symptoms, if I hadn't coughed up blood I would likely never been diagnosed. I really thought after a year of meds, I would have cleared. Thank you again, I pray for your continued strength.

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I understand about the shower ritual.
Homemade sourdough bread. nice and yummy. Then there is Sue who makes her own yogurt. I am making my own hummus in between everything else one has to do to eat healthy and yet want it all to be enjoyable.
Sorry to hear you had an episode with coughing up blood. I have my fingers crossed that I don't see red with my continued BE and MAI...Macrobacterium Avium Complex Intercellular infection.
Wishing you a good planting season ahead...coming soon, if not some already.
Barbara

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malambrit | @malambrit | Feb 23 2:36pm
In reply to @kwi "I think what malambrit means by 90/10 is that she eats clean and healthy 90% of..." + (show)
@kwi

I think what malambrit means by 90/10 is that she eats clean and healthy 90% of the time which is remarkable feat. I wish I could say the same about myself.
When I was first diagnosed, my pulmonologist insisted on airway clearance and she sent me to an ID doctor. Both were not specialists in MAC and both wanted me to start antibiotics right away even though I was not symptomatic. The pulmonologist did not do a good job of explaining why I needed to do airway clearance as I was not bringing up anything and I did not feel I had anything to bring up. I complained about having to do the AC to the ID doctor who then said he didn’t think it did anything anyway and as far as he was concerned I didn’t need to do it. Thankfully I didn’t fully abandon airway clearance and stopped going to that ID doctor and made an appointment at NJH. People on this forum helped me realize how important nebulizing 7% saline and airway clearance is to do every day.

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I still can't wrap my head around the fact that there aren't more doctors that know about this disease and how to guide us. How I could go almost year without knowing about airway clearance and I found out by self advocating. Through many google searches, I found Linda Cooper Esposito, Be Clear. I scheduled a zoom call with her and she was a treasure box of information. That is how I knew to call The Mayo. I understand National Jewish is also gold standard. I love Colorado, climbed Mt Elbert, a 14er, to get married:) My career is a 6 day a week gig and would be very difficult for me to make regular treks for appointments. I was extremely impressed with The Mayo and hope I can continue with follow ups there.
Best,

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laborday24 | @laborday24 | Feb 23 8:18pm
In reply to @malambrit "Hi, new to this group but was diagnosed a year and 2 months ago with Bronchiectasis..." + (show)
@malambrit

Hi, new to this group but was diagnosed a year and 2 months ago with Bronchiectasis and MAC. March will be 1 full year on the 3 antibiotic cocktail and I received my most resent result with MAC positive this morning. I am so discouraged. I haven't had any "bad" side effects from the drugs. It was about 9 months in before I found out about airway clearance. I did go to The Mayo for testing in December but my local Pulmonologist has left the hospital and there isn't a local replacement and I haven't been referred to a near by Dr. at this point. I do have a local IDD. It has been a frustrating journey. Until the Mayo, when I went to appts, no one listened to my lungs, did pulmonary function test... I am 59, work out regular but this has been more challenging, mostly due to being tired and if I'm honest, a lack of motivation. I eat very clean 90/10, I do enjoy wine and buy European wine to avoid added toxins. I bought a life straw water filter, change out tooth brush regular.... I live on 10 acres, have animals, garden.
I take supplements and provided list with all drs I have seen. I have started taking Oregano oil as well. Has anyone in this group been on the Big 3 for a year and still not cleared the infection? I am considering stopping the treatment for fear of what else is happening to my organs. I really want to live a long, productive life and I am scared and feel like I am on an island by myself.. Sorry for the rambling- My anxiety is over the top today!

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I was on big three for two years. Mine was resistant to the azithromycin. I was so distraught. Went to national Jewish health center in Denver. I am on amikacin infusions and 4 oral antibiotics. Hope you get better results

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mmahlik | @mmahlik | Feb 24 9:10am
In reply to @malambrit "Hi, new to this group but was diagnosed a year and 2 months ago with Bronchiectasis..." + (show)
@malambrit

Hi, new to this group but was diagnosed a year and 2 months ago with Bronchiectasis and MAC. March will be 1 full year on the 3 antibiotic cocktail and I received my most resent result with MAC positive this morning. I am so discouraged. I haven't had any "bad" side effects from the drugs. It was about 9 months in before I found out about airway clearance. I did go to The Mayo for testing in December but my local Pulmonologist has left the hospital and there isn't a local replacement and I haven't been referred to a near by Dr. at this point. I do have a local IDD. It has been a frustrating journey. Until the Mayo, when I went to appts, no one listened to my lungs, did pulmonary function test... I am 59, work out regular but this has been more challenging, mostly due to being tired and if I'm honest, a lack of motivation. I eat very clean 90/10, I do enjoy wine and buy European wine to avoid added toxins. I bought a life straw water filter, change out tooth brush regular.... I live on 10 acres, have animals, garden.
I take supplements and provided list with all drs I have seen. I have started taking Oregano oil as well. Has anyone in this group been on the Big 3 for a year and still not cleared the infection? I am considering stopping the treatment for fear of what else is happening to my organs. I really want to live a long, productive life and I am scared and feel like I am on an island by myself.. Sorry for the rambling- My anxiety is over the top today!

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Hello! Our stories are similar in many ways. I’ve been doing airway clearance since November but I was diagnosed with MAC last week (I desperately want to stay off the big three until it’s truly necessary). two days ago I had emergency appendectomy. Sooooo tired of my body!
There is so much good info in these threads…it’s been a literal lifesaver.
I’ve been taking a good probiotic and good quality curcumin each morning. I think it really helps with inflammation and I’m not usually a big supplement person. But certainly check with your doc first. I’m going to look into oregano oil.
I also JUST built my dream greenhouse. I wear an N95 mask in it every minute no matter what I’m doing. It’s become a new normal and not very annoying. My doc says not to stop things you love the most, just take precautions.
Exercise….ugh. Gotta get that going.
I’d like to know more about wine toxins, if anyone cares to share. I didn’t know that was a thing to be concerned about.
You aren’t alone…there are so many struggling with this and everyone on this site is incredibly helpful.

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1 reply
malambrit | @malambrit | Feb 24 6:33pm
In reply to @mmahlik "Hello! Our stories are similar in many ways. I’ve been doing airway clearance since November but..." + (show)
@mmahlik

Hello! Our stories are similar in many ways. I’ve been doing airway clearance since November but I was diagnosed with MAC last week (I desperately want to stay off the big three until it’s truly necessary). two days ago I had emergency appendectomy. Sooooo tired of my body!
There is so much good info in these threads…it’s been a literal lifesaver.
I’ve been taking a good probiotic and good quality curcumin each morning. I think it really helps with inflammation and I’m not usually a big supplement person. But certainly check with your doc first. I’m going to look into oregano oil.
I also JUST built my dream greenhouse. I wear an N95 mask in it every minute no matter what I’m doing. It’s become a new normal and not very annoying. My doc says not to stop things you love the most, just take precautions.
Exercise….ugh. Gotta get that going.
I’d like to know more about wine toxins, if anyone cares to share. I didn’t know that was a thing to be concerned about.
You aren’t alone…there are so many struggling with this and everyone on this site is incredibly helpful.

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I so want a greenhouse!! I have been looking at designs and giving my husband not so subtle hints 🙂
Wine in the US is not required to list additives. I said toxins but I guess that is a strong word. Do a search on healthier wine. Unfortunately it is more expensive. I need to research other brands, Dry Farms is the one I currently order. I do enjoy a nice glass of wine in the evenings but am going to cut that to weekend nights.

Yes, many American wines contain additives, though winemakers aren't required to disclose what they use. Additives are used to stabilize wines, meet demand, and make wine production easier.
Common additives
Sulfites: A preservative that prevents bacterial growth and oxidation
Tannins: A natural preservative that gives wine an astringent taste
Sugar: Added to sweeten wine or increase alcohol levels
Fining agents: Reduce haziness and bitterness
Dimethyl dicarbonate: Stabilizes and sterilizes wine
Copper sulfate: Removes hydrogen sulfide
Other additives
Isinglass, a form of collagen made from fish bladders
Herbicides and pesticides
Food coloring
Acidifiers
Mega Purple, a juice concentrate that deepens the color of wine

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mmahlik | @mmahlik | Feb 25 5:58am

So helpful, thank you. And here I thought wine was just grape juice!

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1 reply
blm1007blm1007 | @blm1007blm1007 | Feb 25 6:29pm
In reply to @mmahlik "So helpful, thank you. And here I thought wine was just grape juice!" + (show)
@mmahlik

So helpful, thank you. And here I thought wine was just grape juice!

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@malambrit,@mmahlik
Just to pass on what I have read and know due to my experience so that you will be alert to watching all aspects of your health on this journey with BE.
Google: Do people with Bronchiectasis have yeast infections.
My experience. I had systemic Candida after a heavy bout of antibiotics, long before I was diagnosed with BE, and wine made my yeast infection, Candida, worse.
Not saying that you have a yeast infection, not saying that you will develop one, but just be aware of the possibilities of what we can possibly, not always and not everyone, develop for one reason or another on our BE journey.
I understand the enjoyment that wine brings.
Barbara

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2 replies
catfish3012 | @catfish3012 | Feb 26 10:05am

I have been on Trelegy for 4 years prescribed by my pulmonologist. Are all bronchiactisis patients prescribed this?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 26 11:46am
In reply to @catfish3012 "I have been on Trelegy for 4 years prescribed by my pulmonologist. Are all bronchiactisis patients..." + (show)
@catfish3012

I have been on Trelegy for 4 years prescribed by my pulmonologist. Are all bronchiactisis patients prescribed this?

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Not necessarily - I have been prescribed a generic version of Symbicort, which contains 2 ingredients and not only helps my Bronchiectasis, but keeps my asthma well-controlled.

I think it depends on the sum of your symptoms and what your doc feels would be most useful.
Are you feeling well using Trelegy, or do you think you need something else?

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