(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.

@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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I didn't know what the equivalent of licorice in Chinese was. So I looked it up in Google Translate. I immediately recognized the name. I'll bet everybody of Chinese origin who is my age or even younger would recognize the name of this herb in Chinese because we all grew up taking tablets of it to stop coughing. They are still being prescribed by Chinese traditional medicine/herbal doctors today.

According to the article below:
"Chinese Licorice should not be confused with licorice from other locations, such as Europe and America. “Glycyrrhiza Uralensis” is the Chinese licorice. Other types of licorice like “Glycyrrhiza glabra” do NOT have the same healing properties discussed here. They do have their own set of healing properties though that you might want to research further."

http://www.herbslist.net/chinese-licorice-root.html

Since the ingredients listed is clearly specified as Chinese Licorice Roots, maybe we won't have to worry too much about its negative effects to our health?

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Thank you, @tdrell. I'm not yet on Medicare - that's till a few years off. I do have insurance through work, but Kaiser would have to refer us to another specialist, and I've already asked about that, so that means out-of-pocket. My husband has already been diagnosed with MAC, as two sputum samples indicating the infection, and he has two CT scans (one from March, then second in May). He's mainly looking for a second opinion. I don't know if that will require extensive additional testing, or simply an appointment with a doctor. Perhaps he could do a conference call.
I will look for the NJH YouTube videos.
I will need to fly from San Jose, CA to Denver, and, you're right, there are a lot of flights going there. I have been tracking the costs of flights to Rochester, and now it's $279, which is not bad.

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@ling123
Interesting...
I just read up some on herbal licorice in my book "Herbal Antibiotics" by Stephen Buhner.
He did mention the different varieties also. But he also did state that licorice can be overused. He recommends not to use more than 10 days at a time.
So maybe we still need to be careful about the length of use.
But I will give a try for sure.
Shari
@pfists

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@pfists Good point. Being careful and mindful of side effects can never go wrong. Drugs, herbal or non-herbal, could all have some kind of side effects when overused, except there is no regulation by FDA on the herbal medicines thus no warning labels on them. So we need to be our own advocates for drug safety and do due diligent to protect our own health.

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@ling123, Ling, my tea (that I swear by and love) has Chinese licorice root as does the Clear Lungs. The label with the ingredient list doesn't specify which of the two kinds of Chinese licorice root they are using in it. I am not even positive which ingredient that mandate was siting. It may not have been the licorice. Even if it were, you would have to use it a lot for it to produce adverse effects. I was drinking the tea 2-3 times a day and very little other fluid intake; I think it had something to do with my heart arrhythmia.

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@ling123 and @windwalker I was drinking lemon ginger licorice tea for a few years ,4 cups a day, when I started on the big 3 and feeling queasy. It was a miricle worker for me.

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@jklopetro

Hi, my name is Gayle. I was recently diagnosed with Mycobacterium but am holding back on taking the antibiotics until I get more information. I have searched many hours to find one thing that puzzles me in some articles: Just because the germ is present doesn't always mean one is infected. I do not have any of symptoms. True, they say a culture and CT scan indicate I do. I had pneumonia back in April and they told me I do, but I plan to see another physician because the statement I mentioned earlier about having the germ but not necessarily be infected sticks with me. I am 73 and feel fine after I recovered from pneumonia. I do agree that I have had pneumonia many times in my life and get it easily even though I have had the shot. I appreciate this website and find all of you helpful and friendly. I look forward to staying in touch with you.

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@jklopetro, Hello Gayle, welcome to our forum! I have to agree with you, we are a helpful and friendly bunch. I, like you had pneumonia many times over the last 25 yrs. My pneumonia was never sputem tested, so I have suspicions that I may have had MAC or Pseudomonas during some of those bouts. Actually, all humans have some amount of mac in their lungs because it is all around us in soil and water. It doesn't usually make healthy people sick. Usually people that get NTM/MAC also discover that they have a condition called bronchiecstasis, which is one reason some folks get serious infections from the MAC. A ct scan will uncover bronchiecstasis as well as the condition of your lungs. @tdrell, is right, the gold standard for testing initially is three consecutive sputem tests. Three samples over three days, refrigerate them until they can be sent to a lab. It would be advisable to have your doctor send them to NJH to do the lab work. I wouldn't do a ct scan until results are back from the lab, that takes about six weeks. CT scans are powerful and shouldn't be done unless necessary. You definitely don't want to get very many of them. You are doing the right thing by educating yourself on this. MAC infection is a complicated disease which makes it difficult to treat. This bug can have a way of coming and going, or not give you much trouble at all. It could also give you tons of trouble. For now, learn all that you can about it, and stay on top of it. I feel like like for now, you might want to ask your doctor about nebulizing saline twice a day. That's 7% sodium chloride. It is harmless, it is salt water; it is recommended for good lung hygiene. It helps to keep the phlegm thin so that it comes up easier. Also, it makes it harder for the MAC to colonize. I do not have phlegm issues right now, but I do this treatment as a preventative measure. I feel like germs don't really like salty environments. If you read some of the back passages on this site, you can learn a lot. If you look up @katemn, you will find a treasure trove of good advice. We are here for you Gayle, -Terri M.

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@irene5

I think if you present worsening symptoms or deteriorating radiologic scans you would be treated. The nodular variety progresses more slowly than the cavitory type, but a worsening clinical picture for either would warrant treatment.

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@tdrell, Great advice Terri!

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@heathert, I hear you Heather. My tea was the only thing that worked for me. We just have to be careful about what we promote because many people on this site have co-morbid diseases, along with the MAC/bronchiecstasis; and licorice can be harmful to them. anybody wanting to try herbal or alternative supplements MUST RUN IT PAST THEIR DOCTORS FIRST.

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@pfists, what kind of drops are you taking? Also, want to note that the licorice in Clear Lungs and the Breathe Easy tea is not the only active ingredient in these products. There are many other things in there that also have beneficial qualities.

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