(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

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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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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@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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lklopetro….Is the medical facility/doctor you got the input from re your mycobacterium one that
-has a lab qualified to do the 3 sputum specimens needed for NTM confirmation……the final answer should be after 6-8 weeks of time.
-CAT scan of chest read by Radiologist who is highly trained in reading Chest Cat scans…best certified in it.
-same with ID or Pulmonologist…..that they see at least 12 clients a year who have NTM infections..
you are smart not to jump into taking the meds….locally here in Wisconsin a year ago…the ID was after meeting me for two seconds began writing out the prescriptions for the big 3 meds…l stopped her saying l was going to NJH in a few months. Where it tuns out they said although one culture from Wisconsin grew the MAC others did not and the Chest Cat scan done there did NOT show active infection or bronchiestasis….and that my GERD was causing me to aspirate stomach secretions which had the tap water hence NTM into my lungs . So my treatment is geared to controling the GERD and the aspiration. tdrell

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Hi Cindy, Thank you for your point of view on taking the antibiotics. I agree with you about the problems they cause. I have searched many Mac chats and have not found one person who has overcome MAC after all their years of misery on therapy. Some say they were for a short time and it returned. Some doctors have even told their patients to stop taking them. I read an interesting article from the Journal of Thoracic Disease that said many times that just because the germ is present in the culture and on the person doesn’t always equate with active infection dated December 12, 2013 I am checking with other doctors before I begin the treatment. Everyone here seems so encouraging and helpful and I’m glad I found the group.

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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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Hello @dixer – I’ve written before on here, and my husband would like a second opinion, preferably flying to the Mayo Clinic or to NJH. I’ve contacted both (though I contacted Mayo in Phoenix – it may make more sense to go to Rochester?). I’m waiting for NJH to call back to set up a conference with the nurse. Based on the result of the conference, they will decide if it makes sense to set up an actual appointment, which, I was told, will take 6 weeks. The benefit of NJH is that there is no up-front cost until after the conference. Mayo said it would cost $650 (non-refundable), plus extra costs for any other treatment. I do not know how long it will take to get an appointment with them. My guess is that the cost will be about the same for both places, but the important thing is that my husband can be seen by someone who has extensive history with NTM and bronchiectasis. I do not believe that the physicians at Kaiser do have this experience.
For NJH, who would you recommend? I see that there’s a Dr. Dailey who appears to be the head of the dept. For Mayo Rochester or Arizona, who would members recommend? I saw a Dr. Akamit (sp) at Rochester seemed to be the expert there.

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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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dixer I went to NJH….both Mayo’s and NJH are specialists in NTM…..
I went to Mayo’s in Rochester for other things over the years last going 14 years ago….
I was comfortable and asked for Dr Gwen Huitt at NJH…she like Dr Daley are infectious Disease specialists….they all work with a team of NTM specialists….who after nurse gets information from you…think of phone interview ,…takes over an hour…no cost…then send records when they tell you to…then those are reviewed…then they call to set up appt…..
Payment there seems secondary to getting clients care….all care was free from their beginning in 1899 to 1968.
I have traditional medicare and an excellent suipplement….and paid nothing for my care for 7 days of testing.and appts.
if you decide to go to NJH and want to choose a DR…watch the videos on Youtube from the NTM conferences in 2015 and 2016 from workshops for clients with NTM given at NJH….you will see the doctors present and see which ones seem to be your “type”
also…consider possibility of attending this years workshop all day Saturday October 21st…. although after a few months those programs will be posted no doubt.
one other advantage to NJH…there are alot of planes going there…whereas l doubt that for Rochester…..
if you are driving…then you have more flexibility. tdrell

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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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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?

Liked by pfists

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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

Liked by ling123

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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.

Liked by ling123

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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.

Liked by ling123

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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.

Liked by tdrell

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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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