(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

@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the “exophaila”. The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a “black fungus” growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

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Hi Terri .Sorry I took so long to reply! Evacuated, then tried to return home, but no water or electric so headed back to a hotel. But condo is fine. Thank goodness. Glad your place was okay! Did not look good there for awhile.
Guess the excitement and travel did not do well for me. Ended up getting sick and had to bring in my big guns- Levoquin and prednisone. But they helped!
Just curious- on another site, another Bronch person just moved to Vegas for drier air. She lived in South Carolina, very humid. She said she already felt better and less sputum. Would love it if anyone knew if this could help? I looked all over the internet but did not find any proof. Wouldn’t less “stuff” be fabulous?
Thanks for your thoughts Terri!
Fondly, Mary Jo

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@nick52, I plan on making my own soon. You can get the ‘seeds’ (that is the culture medium) at a good health food store. The culture compounds on itself daily and you end up with an abundance of it. I Googled the process of making your own. It is super easy!

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@heathert, I have never had kombucha, will have to try it.

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@auntnanny

pfists Mayo’s called me this morning and have called in cipro for me to pick up tomorrow. Guess we’ll see how that goes. Thanks for the encouragement

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@auntnanny, Jan, the Cipro did the trick for me. I hope it works for you as well.

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@nick52, Jet.com sells Clear lungs, by California law, a warning was added to this product. You may want to go to that site and look to the bottom right. Tell me what you think. I know about most of the herbal ingriedients, and know they are safe and effective, but I plan to look up the chemical compounds. FOLKS, not all herbal or over the counter products are safe at all times; they can combine badly with medications you are already taking for example. Always check with your physician before taking suppliments.

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@nick52, Vitaminlife.com also sells Clear Lung, it too has the warning at the bottom.

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@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??

Liked by 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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Windwalker…I think too much black licorice affects the heart rate. 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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@tdrell, it does. I now wonder if that isn’t what was giving me SVT events? Chinese licorice root was the first ingredient in my tea at 300 mg. I was living on that tea for years. It did help open the airways though. There is a warning about people taking corticosteroids should not take licorice. Who knew that our benign little candy could be dangerous?

Liked by tdrell

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@jkiemen

@jkiemen, Hi Jo Ann. I read this article, looks hopeful. Plus, it gives access to many other published research articles. I saw where the first one on the list references list was Katherine’s doctor Dr. Aksamit at the Rochester Mayo Clinic.

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Windwalker….after I wrote the post I consulted “Dr Google” and was amazing at the effects from Licorice….blood pressure etc…wish I knew how to copy and paste it.tdrell

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@auntnanny

pfists Mayo’s called me this morning and have called in cipro for me to pick up tomorrow. Guess we’ll see how that goes. Thanks for the encouragement

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Finished 6 days of it today — 8 more to go. I hope it’s working…….

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@windwalker

@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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Kay strand and Windwalker please phrase the question to take to Workshop at NJH

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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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@windwalker
Licorice can be deglicerized it’s the glicerine that’s the problem. It’s Also called “dgc licorice” for deglicerized. It wont cause with blood pressure problem if that part is removed.
No need to worry it’s not in candy licorice.. I don’t believe there is any in it anymore except for the real old fashion kind.
I have heard a lot about herbal licorice also for lungs. Im considering the clear lungs also if it doesn’t cause the side effects you mentioned.
I bought a book called Herbal Antibiotcs by Stephen Bruhner. He had a part in the book about treating Mycobacteriums and all the bacteria’s us people with brochiectasis have trouble with. I also have been using some of the herbs he recommends with no side effects. I told my Dr I was going to try them also …I figured at this point I haven’t much to lose. I started slow with just a few drops and have been working up. I can’t say if it’s working or not either because Im not taking near the amount he has recommended. But many lymes patients have used these herbs with success. Very interesting!
He also explains how antibiotics are really losing ground and are becoming more ineffective because bacteria are becoming more resistant. Im not recommending you stop you antibiotics… but it’s good to know.
Anyway I think licorice sounds like something to add on to my arsonal. The Dr in the book wrote whole a whole chapter on licorice.
I will find our more and share later.
Shari

Liked by tdrell

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@windwalker, so yum!

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