(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.

Hello Cila, when I travel .. I googled “shelf stable probiotics” .. I found this one so travel with it. It does not have as many billion but better than nothing!

Probiotics 30 Billion CFU and 18 Strains Supplement The Best Probiotic On Amazon With Prebiotics For Women And Men Supplements Support Candida Yeast Infection IBS Bloating – By Island’s Miracle
https://www.amazon.com/Probiotics-Supplement-Probiotic-Prebiotics-Supplements/dp/B00WL25F0U
Cila, take some time to read this website .. has some good info. Plus if you have read past posts you know that I have always rotated 3 different probiotics .. just my decision .. to get the most benefit from various probiotics. Good luck and enjoy your time with your family .. in the long term family and friends are really what matter in life! Sending you a hug .. and safe travels! Katherine

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@katemn

Hello Cila, when I travel .. I googled “shelf stable probiotics” .. I found this one so travel with it. It does not have as many billion but better than nothing!

Probiotics 30 Billion CFU and 18 Strains Supplement The Best Probiotic On Amazon With Prebiotics For Women And Men Supplements Support Candida Yeast Infection IBS Bloating – By Island’s Miracle
https://www.amazon.com/Probiotics-Supplement-Probiotic-Prebiotics-Supplements/dp/B00WL25F0U
Cila, take some time to read this website .. has some good info. Plus if you have read past posts you know that I have always rotated 3 different probiotics .. just my decision .. to get the most benefit from various probiotics. Good luck and enjoy your time with your family .. in the long term family and friends are really what matter in life! Sending you a hug .. and safe travels! Katherine

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Hello Cila,
I have found VSL#3 to be the best probiotic, loaded with several species of beneficial bacteria. The different species allow for replication of what your normal flora should be composed of.You will find it is kept in your pharmacist’s refrigerator. The informational booklet says the microorganisms are still viable for up to two weeks at room temperature.
Enjoy your travels!
Liliane

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@digmeme

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

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I’ve been on the big three 3 days a week for six months now. Going to have a CT on Monday to see if treatment is helping. My last scan was in December which showed more nodules and scarring

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@boomerexpert

I’ve done some research on MAC/MAI reinfection, as the notion makes sense to me…if, for instance, I was infected via my water (through the mist in the shower, most likely culprit), if I eliminate the bacteria from my water system, at least I can keep the matter from worsening. To that end, I found this from Nat’l Jewish titled “Ways to Reduce Exposure to MAC Bacteria” https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx
I have as a result raised temp of the hot water heater to 135 (the level required to kill the bacteria in the hot water), and am purchasing a whole-house filtration system at the 0.2 microns filtering level they recommend for the complete filtering out of all bacteria, plus a UV cartridge that first keeps the bacteria from reproducing before they are filtered out, total cost (before installation) about $300, to eliminate the bacteria in all household water.
Hope this is helpful to all…

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I was told I got Mac from working in the yard. Humans usually don’t get it unless they have low immune system

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Liliane and Cila, just do your Due Diligence .. check website: http://vsl3.com/daily-intake/ It indicates “VSL#3® is a medical food probiotic that is intended to be used under the supervision of a physician. Please consult with your doctor prior to trying VSL#3®.”

Each of our bodies is different and will react differently. I know that I use a couple of “homeopathic” options that are not “Western Medicine” .. but I always make sure my Pulmonologist is aware of what I am doing so there is no conflict with my other medical care. I would just caution you that since the VSL#3 has 112.5 billion live lactic acid bacteria rather than some of the other 10 to 50 billion brands .. it might be something to discuss with your doctor prior to ingesting? Just a thought? Best to all! Katherine

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@digmeme

I have been dealing with this since it was finally diagnosed January 2016. I began the 3 drugs immediately and had all sorts of trouble with them. I was in bed for 17 hours one time with 5 layers of clothes on, deathly sick, screaming with leg cramps and sweating like I was a wet wash rag. I was immediately taken off the drugs and had more tests and I had bronchitis. Then put on another med for that. I have not been happy with my pulmonologist in Fayetteville, AR.
FINALLY……………yesterday…………………answers from Dr. Stephen Hennigan, an Infectious Disease Specialist! He sat and talked to me about this stuff for 50 minutes! He said I was taking too much of the meds…….high dosages! He took me OFF everything until I have a CT Scan of my lungs this Friday for him to evaluate. I do not know if any of you are believers in essential oils…….I wasn’t either……had never used them until I went for my mammogram about a month ago and the technician who I have known forever started telling me how great THIEVES essential oil is for tLhe immune system. Her bottle came from Young Living essential oils and I got mine from Bulk Apothecary. I put 4 drops in my diffuser right beside my nightstand and it runs for 5 hours……I am amazed………..and I mean amazed. I also put 2 drops in my last sip of coffee every morning (beware: it’s horrible tasting, but very safe). I told the doctor yesterday how much better I feel. He will evaluate my scan as soon as he can and then decide what to do about meds…..he did not even mention the main 3 that everyone takes………….he mentioned 2 totally different ones. I am going with this guy for sure! He also told me that there is a very good specialist on MAI/MAC in Tyler, TX if any of you are close there. I can also find out his name if anyone needs it!
So………………if you question your doctor…………………go see another one for a second opinion! I have Medicare and also a supplement that have paid for everything so far, once I met my $166 deductible for Medicare!
I asked the doctor if I was going to die and he said yes…..everyone is going to, but I am not going to die from MAI/MAC……………and I truly thought it was killing me! Hope this helps!

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Hello Cathy, good luck on Monday! Been in your shoes many time! I just told myself “Put my energy into what I can control .. let go of what I can’t control!” To me that meant .. put my energy into keeping my lungs as healthy as I could possibly do by exercising .. following what my doctor told me to do .. and letting go of what I couldn’t control .. the progress of my disease!

Be doing this .. in time I DID BECOME “STABLE”! I have been off antibiotics since May 2014 and am living life happily and well! Just keep plugging along .. doing the VERY best you can and focus on the positive .. AND let us know how you are doing! Keep us posted!
Sending you a hug! Katherine

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@heathert

I agree that if the scientists had some money to put into this they may find the answer quite soon, there is enough of us with this for the pharmaceutical companies to look into this a bit more. Wish I knew how to get this ball rolling. My doc said there is no new medicines in the pipeline just rehashing of the old antibiotic meds. We need new antibiotics to be produced, and not just for MAC, it has been in our news alot.

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AWESOME NEWS!

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Hi all, I have been on inhaled Amakacin since Wednesday and have no voice at all this afternoon, does anybody have any advice on inhaled Amakacin side effects? We went to a disney on Ice show today and my voice wasnt great before it ,but I think the air conditioning has probably made it worse. Any advice greatly appreciated, its a strange feeling.

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Hello heathert, sorry to hear this .. yuck! Personally I did not have any side effects from the inhaled Amikacin in the thirty months I did it .. other than the inconvenience! I now have “dry mouth” and have wondered if that might be a resulting? Who knows .. could just be the aging process .. or from other drugs .. hard to tell.

But I just googled it .. and hoarseness is a side effect of inhaled Amikacin. It did say: Subsequent episodes of oropharyngeal problems were prevented with improved vigilance of mouth care (including mouth gargling as well as rinsing) after each dose administration.

I wonder if this might help? Things that have helps me with my mouth and throat health has been Biotene products. The dry mouth oral rinse plus the oral balance gel both have helped me. I also wondered if the old fashioned gargling with HOT salt water might feel good on your throat? I know I always do that with a sore throat. Just my thoughts. Hope they might help you! Sending you a hug! Katherine

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Thanks so much Katherine I will try the salt gargle, and rinsing, I do not have a sore throat, I just cannot speak(so strange), my voice box is completely gone, so frustrating not being able to go anywhere or even talk on the phone. I just hope its worth it, I have heard how great it is so will keep at it.

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