(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

@cila

Sophie, do feel hot at night? I noticed since I started the meds I hot all the time especially at night. I take my one meds at 11AM the the two at 1:20PM after I eat lunch. I need to find out about the ear. Do you know if you go to your Primary care Dr. or to the ENT Dr.? Thanks for help

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Thanks Katherine, I will mention it to my Dr. when I see him. how do you take the probiotic with you when you travel when they need to in the fridge? I will be going to visit my son and I’m wondering how can I take them with me. Is it alright to just take what I need and put them in my purse, then when I get to his place put them in the fridge? Thanks for all your help!

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@boomerexpert

Actually, if doc’s would put some time and effort behind seeking a more efficacious treatment, they might just find it is that easy…

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Ah, ye of little faith! You confuse avid advocacy with a need for doc’s to be God… This is not about the quality of doctoring given what’s currently available…it’s about changing what’s currently available to something that is more effective. I do believe that if each of us asked our physician(s) to call for more research on a better treatment given the significant uptick in infections here in the US alone (not counting the rest of the world) some may take that request further…some may dismiss it (as one person here experienced). But as is the case with anything, you have no chance of getting what you don’t ask for. We have all to gain/nothing to lose by engaging our doc’s in this needed crusade for change. I’ve given both my docs (pulmonologist and infectious disease) the link to this forum, so they can learn first hand how minimally effective, and for some, harmful, these meds are – both have said they’ve not before heard that so many folks are having such problematic responses to the meds.
It’s incumbent upon us to advocate for ourselves.

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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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Call Mark @ 239-357-0038 – he’s found an even better filter so tell him Terri sent ya’!

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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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wahooo that is great news, superbugs are such a problem in the world today, yay go usa and uk for getting proactive!

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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

REPLY
@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

REPLY

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

REPLY
@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

REPLY
@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!

REPLY

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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