(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 group.

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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Thanks Sue. You are always so helpful. I may have to go to the three-drug regimen. I just know I will have really bad side effects–diarrhea and worse incontinence than I have with coughing. Do you know of anyone who has had a "cure" of MAC with the three-drug regimen or is it just a reprieve? I have really been fighting it.

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@nac1

Thanks Sue. You are always so helpful. I may have to go to the three-drug regimen. I just know I will have really bad side effects–diarrhea and worse incontinence than I have with coughing. Do you know of anyone who has had a "cure" of MAC with the three-drug regimen or is it just a reprieve? I have really been fighting it.

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None of us is likely to proclaim ourselves "cured" because MAC is everywhere, and with bronchiectasis we are always susceptible. But… a number of, including me, have kept MAC at bay for significant time by nabbing 7% saline and doing airway clearance.
Also, a good regimen of probiotics, used daily kept my diarrhea controlled. Fatigue was the biggest problem. And the cough went away!
Have you tried neb plus airway clearance?
Sue

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MacInPA….just asking if what I'm taking is standard for MAC.
Azithromycin 500 MG – 1 tablet a day with small meal
Ethambutol HCL 400 MG – take 2 tablets a day with or without food
Rifampin 300 MG Capsule – take 2 twice a day
I have discovered that "Capsules" themselves bother my esophagus and stomach. I was told that I can take the medicine out of the capsule and mix it with food.
Due to such side effects with starting all the Big 3 at once, my doctor as agreed to just starting again with one at a time for a week. Then, adding the second one the next week, third one the third week.
Do others find it easier to take them at night one hours before bedtime? I may try that, too.

REPLY
@macinpa

MacInPA….just asking if what I'm taking is standard for MAC.
Azithromycin 500 MG – 1 tablet a day with small meal
Ethambutol HCL 400 MG – take 2 tablets a day with or without food
Rifampin 300 MG Capsule – take 2 twice a day
I have discovered that "Capsules" themselves bother my esophagus and stomach. I was told that I can take the medicine out of the capsule and mix it with food.
Due to such side effects with starting all the Big 3 at once, my doctor as agreed to just starting again with one at a time for a week. Then, adding the second one the next week, third one the third week.
Do others find it easier to take them at night one hours before bedtime? I may try that, too.

Jump to this post

Hello – I see you seem to be starting with the Big 3 on a daily regimen. The most usual beginning prescription is 3 times weekly. Did the doctor explain why it is being prescribed daily?

As for when to take, after 2 weeks of nausea and extreme discomfort, I talked frankly to my pulmonologist's nurse and told her there was NO way I could stay on treatment long term feeling so sick. She had me try the bedtime routine, and it worked for me as I was able to sleep (somewhat poorly) through the worst symptoms.

I managed to keep going for 18 months, 12 months 3X weekly, then 6 months daily – long enough to knock Mr. MAC way down, but not entirely out. I now manage with mucus thinners, asthma meds, 7% saline and airway clearance.

I really think the practice of starting the drugs one at a time is a good one.

Is this your first time on the Big 3?
Sue

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