(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.

I ,too, have MAC…..early stage. It was found by accident through a CT scan that picked up the bottom of my lungs. Question? has anyone found articles about "How to Kill Mycobacteria?"
it states: We found that Acetic Acid (vinegar) efficiently kills M tuberculosis after 30 min of exposure to a 6% acetic acid solution. The activity is not due to pH alone, and propionic acid also appears to be bactericidal. It would be so much easier to breath in a solution of Apple Cider Vinegar to kill MAC without killing all the rest of my body with the Big 3. Thanks, MacinPA

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@macinpa

I ,too, have MAC…..early stage. It was found by accident through a CT scan that picked up the bottom of my lungs. Question? has anyone found articles about "How to Kill Mycobacteria?"
it states: We found that Acetic Acid (vinegar) efficiently kills M tuberculosis after 30 min of exposure to a 6% acetic acid solution. The activity is not due to pH alone, and propionic acid also appears to be bactericidal. It would be so much easier to breath in a solution of Apple Cider Vinegar to kill MAC without killing all the rest of my body with the Big 3. Thanks, MacinPA

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Acetic acid is categorized as a potentially caustic substance. So too is propionic acid. A hazard or irritant to eyes, nose, throat and lungs. Please do not consider inhaling it. A comparison would be bleach- a good disinfectant, but not something to put into your lungs.
Have you considered using hypertonic saline instead? You can search here to learn about it.
Sue

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Thank you Sue for the info. I'm researching everything possible that might help.
Will Hypertonic Saline kill Mycobacterial?
MacInPa.

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@macinpa

Thank you Sue for the info. I'm researching everything possible that might help.
Will Hypertonic Saline kill Mycobacterial?
MacInPa.

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Hypertonic saline will suppress mycobacteria, meaning it cannot grow. I am on the road with no access to my usual materials, but there is a research paper showing the effect of different concentrations of saline on various strains – most cannot survive at 6% or higher.
The second effect is thinning of mucus, which aids in lung clearance.
I stopped antibiotics while still MAC positive due to side effects. I have stayed healthy for 30 months using 7% saline, airway clearance and asthma meds as needed. I have had 2 minor exacerbation, treated with steroids and a short course of antibiotics.
This was through Covid and regular interaction with 2 little germ factories (aka grandsons) , as well as traveling and continuing many activities. Many others on Connect have had similar experience.
Sue

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@sueinmn

Hypertonic saline will suppress mycobacteria, meaning it cannot grow. I am on the road with no access to my usual materials, but there is a research paper showing the effect of different concentrations of saline on various strains – most cannot survive at 6% or higher.
The second effect is thinning of mucus, which aids in lung clearance.
I stopped antibiotics while still MAC positive due to side effects. I have stayed healthy for 30 months using 7% saline, airway clearance and asthma meds as needed. I have had 2 minor exacerbation, treated with steroids and a short course of antibiotics.
This was through Covid and regular interaction with 2 little germ factories (aka grandsons) , as well as traveling and continuing many activities. Many others on Connect have had similar experience.
Sue

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Thank you again for your helpful information. I need to talk with my doctor.
MacInPA

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@sueinmn

Acetic acid is categorized as a potentially caustic substance. So too is propionic acid. A hazard or irritant to eyes, nose, throat and lungs. Please do not consider inhaling it. A comparison would be bleach- a good disinfectant, but not something to put into your lungs.
Have you considered using hypertonic saline instead? You can search here to learn about it.
Sue

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Good idea about the Hypertonic Saline. I have been using Albuterol in my nebulizer & thinking of asking my DR about adding this solution (including the three meds weekly I'm on). Also have found a little relief when I get these MAC ATTACKS found in Benzonatate generic for Tessalon Perle which for some reason seems to give my almost always congested lungs a nice break. I'm open to any other ideas that can help with my long-suffering way of life. So appreciated!

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@sueinmn

I also am not aware of any, however it contains a number of herbs that could each potentially have side effects or interfere with other medicines.
According to the manufacturer, the capsules contain: ClearLungs Extra Strength Herbal Blend (750 mg/cap):Dong Quai root, Ophiopogon root, Poria fungal body, Chinese Asparagus root, Chinese Skullcap root, Gardenia fruit, Luo Han Guo fruit, Platycodon root, Tangerine mature peel, White Mulberry root bark, Zhejiang Fritillary bulb, Schisandra fruit, Chinese Licorice root, Availablend Bioavailability Complex Sichuan Pepper, Ginger root, Black Pepper, Habanero Pepper, Vegetable capsule, microcrystalline cellulose, silica.

The quantities do not seem to be specified (which if often typical in Chinese herbal medicines.)

When I am recommended an herbal medicine, I look up each ingredient and its potential side effects, then I look for any interaction with each medication I take. For example, here is what WebMD has to say about long term use of dong quai, which is just one ingredient: "Taking dong quai in higher doses for more than 6 months is possibly unsafe. Dong quai contains chemicals that might cause cancer." (https://www.webmd.com/vitamins/ai/ingredientmono-936/dong-quai)

Just something to consider when using any supplement or drug …
Sue

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I take Eliquis, a blood thinner and was told not to take Clear Lungs.

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@sueinmn

Hypertonic saline will suppress mycobacteria, meaning it cannot grow. I am on the road with no access to my usual materials, but there is a research paper showing the effect of different concentrations of saline on various strains – most cannot survive at 6% or higher.
The second effect is thinning of mucus, which aids in lung clearance.
I stopped antibiotics while still MAC positive due to side effects. I have stayed healthy for 30 months using 7% saline, airway clearance and asthma meds as needed. I have had 2 minor exacerbation, treated with steroids and a short course of antibiotics.
This was through Covid and regular interaction with 2 little germ factories (aka grandsons) , as well as traveling and continuing many activities. Many others on Connect have had similar experience.
Sue

Jump to this post

I have started coughing a lot and expelling a lot of mucus. Mornings are awful. Continue to nebulize. I haven't taken the antibiotics currently recommended by my doctor. Wish he would try steriod and short course of antibiotics.(Which ones did you use?) But he will only use the recommended dosages. At my age, I just want to manage this disease. Have you heard of anyone being cured longtime?

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@nac1

I take Eliquis, a blood thinner and was told not to take Clear Lungs.

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That's what I was referring to when I said every herbal supplement needs to be reviewed with an eye to other meds or conditions. Glad you got good advice.

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@nac1

I have started coughing a lot and expelling a lot of mucus. Mornings are awful. Continue to nebulize. I haven't taken the antibiotics currently recommended by my doctor. Wish he would try steriod and short course of antibiotics.(Which ones did you use?) But he will only use the recommended dosages. At my age, I just want to manage this disease. Have you heard of anyone being cured longtime?

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Steroids are a bad idea when you have a known infection because they suppress your body's immune response.

As for a short course of antibiotics, MAC & NTM infections are "slow to grow and slow to go". The problem with a short course of treatment is that it only masks the infection, which soon returns. Repeated treatment like this just means only the strongest of the bacteria survive to attack again. This leads to antibiotic resistance, requiring more potent drugs with even worse side effects to knock it down the next times. The 3 drug, long term regimen was developed exactly to fight the drug resistance of Mycobacteria.

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