(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

@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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thanks Paula, good to know you can stay on the same antibiotics for so long without becoming immune, I have MAI in both lungs all lobes so quite advanced,nodules with cavities, I read that yours was advanced also, I have only been put on the big 3, 3 days a week but wondering if I should be daily, I have just started on the inhaled amakacin trial so hoping that will help. Hope they sort out your 2 new cavities pretty quickly. Thank you so much for your information. I hope they create some new antibiotics soon instead of revamping the old ones.Take care

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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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Hi sophie1019, I have been on the 3 meds 3 days a week for around 17mths, and am just starting on Amakacin inhaled, there was some improvement on my last scan and I have another scan in Aug. My eyes are fine and apart from some ringing in my ears(not bad)my hearing is fine, I know the meds are a worry but I think they are worth it, my biggest problem with them is GERD but had a bit of that before the meds, and tiredness which gets better with time. I hope all goes well for you,please keep us updated on your progress, all the best.

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@sophie1019

Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor’s order)
with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor’s appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.

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Sophie, what a smart idea to download a colorblindness app on a phone! That type of thing was not available .. OR not known to me when I was diagnosed .. thank you SO much for mentioning it! That is why this Forum is so helpful to all of us .. we learn from each other! Would you mind telling us the name of the app that you have found helpful? Best to you! Katherine

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@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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Cila, I definitely did feel hot at night with one of my meds .. I thought it was the Rifampin .. so I would try to take it as early in the day as possible. (I sleep nude so that helps .. just throw off the covers!! .. I know TMI!!)

Ask your Doctor .. but I was told to have a baseline hearing and vision test prior to taking the meds.

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@laneyk

I was diagnosed with MAC in May of 2015. From reading other posts, I did not have the same symptoms as others did. I had been feeling really bad for several months. Coughing was not a problem, although my husband said I coughed a great deal during the night. I was having night sweats and they were increasing and would wake up with headache around sinus area. Finally went to Dr. Since nothing else contributory he treated me for sinus infection.. Returned next week or two when that did not help. Did sinus x-rays. Negative. One week later began running fever and feeling worse. Went back to doctor and white count elevated. To determine cause of elevated white count did chest x-Ray was done showing an apple sized area of infection. Sent to hospital for IV antibiotics. Referred to pulmonologist. TB ruled out after week in isolation. No resolution from IV antibiotic after 10 days. PICC line put in and sent home to continue IV therapy. Oxygen used around the clock. Saw doctor for the next 6 weeks with no improvement. On the last day I saw this particular Doctor he accidentally saw the culture report from when I was in the hospital and mentioned it too me. I don’t know why but he did not start MAC treatment. I googled MAC and when i I saw the recommended treatment and knew that I had not been on any of the recommended meds, I saw my primary dr and requested he may new referral. MAC treatment was started and the first month there was remarkably improvement on chest x-Ray which continued for several months. Negative sputum for MAC after 3 months. My chest x-Ray will always have scarring. I have been on the 3 antibiotics now for 13 months everyday. Soon to end. I have not felt that great, but I have not felt as bad as I was afraid I might. I just keep going and try to make the best of it. After about 6 months I was able to get off the oxygen and resumed an almost normal life. I just pace myself and am grateful that this disease is curable. I hope this will encourage someone else. Do the treatment. I failed to mention that I lost a lot of weight as I had no appetite at the beginning. Appetite returned somewhat and have regained a little weight. During all of this, 4 days out of the hospital, my husband passed away unexpectedly. It’s been a hard year and a half. Expecting better times soon.

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Oh my goodness Elaine, what you have been through! I just can’t imagine how you keep trudging along .. you must be made of some pretty tough stuff. Wow! I’m really sorry about your husband . to have to deal with all this .. and now without him .. now tough. I’m really sorry.

I understand about all that misdiagnosis and weight loss .. our disease is not that well known .. I am shocked you were wise enough to google MAC. I had not a clue about it until I HAD it! My sputum culture was misplaced for a YEAR .. misfiled .. so I know all about goofy issues .. but thank heavens you got to the bottom of it and are getting proper treatment.

One thing I would say is without your husband for support .. keep coming back to this Forum .. there are some really nice people here that are supportive and will be there for you .. with the row you have had to hoe .. you deserve all the support you can get! Sending you a Big Hug! Katherine

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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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Hello boomer, I applaud you for trying to do everything you can for your health .. I would just say to others that when I question Dr. Aksamit on just how/why the mycobacterium got into my lungs his reply was:
Mycobacterium is all over our bodies .. it is in the soil .. it is the water. It is just NOT supposed to be in our lungs.

One theory is that when people shower the water is aerosolized and the mycobacterium is breathed into the lungs. BUT two people/a couple can take showers in the same water in the same places for twenty years and one will get MAC and the other will not.

AND two people can garden together for twenty years disrupting the soil .. and one will get MAC and the other will not.

So in reality we DO NOT know how mycobacterium gets into the lungs at this time .. the research is not there.

So I would tell people that until the research is there .. spend the money if you have it but don’t bat your head against a wall if you don’t.

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@mimi68

Thank you for your response and concern. I wondered about another test that would be faster, as I really have trouble coughing up enough to get the sample, then once I get it to the lab it takes 12 weeks for the results. I think I’ll call the office and talk to his nurse about this. Maybe there’s an issue with the insurance (I have medicare), not sure. Have you had any side effects from the meds yet? Are you taking all 3 antibiotics and 3 days a week, or every day? I wish you luck with them and hope you can get over this infection and feel good soon.

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Hello Mimi, just back home and saw your post. In my opinion .. if you have no symptoms I also feel a bronchoscopy is DEFINITLY invasive! I have had more than one bronchoscopy. If you go under .. there are ALWAYS some possibility of something going wrong. As an example .. the last time I had a bronchoscopy the Anesthesiologist put me under too quickly and my blood pressure plummeted .. AND the procedure had to be canceled. SO .. I am ALL in favor of conservative caution! If you were having serious symptoms .. that might be another story . but If I was I would just be patient.

I also am VERY in favor of your seeking out a 2nd opinion with a doctor who has knowledge of MAC. Do your “due diligence” NOW. Start researching. Call and ask “How many MAC patients has Dr. So and So seen in the past 24 months? That is a very valid question because you want to be a patient of a doctor who is UP on the latest treatment information! Good luck on your research . . and don’t be so afraid of the treatment! Many of us have come out on the other side just fine!

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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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Sophie, are you taking Ethambutol? It can affect your color vision and visual acuity. Don’t assume your mind is playing tricks on you.

Hopefully you had a baseline vision test done prior to starting your meds? If I was sitting in your shoes I would get a vision test ASAP. I was taken off the Ethambutol and my vision returned to normal. Don’t want to concern you but just do your “due diligence”. Sending you a hug! 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 Heathert, I also have Gerd for which I take a daily Aciphex .. but I have also found it very helpful to raise the head of my bed 4-5 inches .. you can get bed raisers. A simple way to do it is:
https://smile.amazon.com/Home–Adjustable-Bed-Riser-Set/dp/B00MH74S16/ref=sr_1_2?ie=UTF8&qid=1469667638&sr=8-2&keywords=dorm+raisers
Hope you find that helpful! 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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Yes I am taking ethambutol. I have had my baseline vision test and my eyes are okay, so far……

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@sophie1019

Thanks for your response. I notice that of I take the meds one at a time, maybe 10 to 15 minutes apart ( per doctor’s order)
with a piece of dry toast, I have no stomach issues at all. Maybe that will help. I also have an eye doctor’s appointment on july 21 to get my eyes checked. I was also told to download a colorblindness app on my phone to keep my colorblindness in check. I have only been on the meds for approximately 3 weeks, got a long way to go.

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One of the test Is called CBT – Color Blindness Test and the other is called Color Blindness Test. There are a lot of different tests that you can download. I take the tests frequently, so as to keep my eyes in check…………

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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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Actually, we do; Docs agree that it gets into the body through some form of ingestion…eating/drinking & inhaling. Unless someone is down into soil on a regular basis while inhaling deeply (say an avid gardener), the most likely source for most folks is ingestion/inhalation of the home’s water.
This is why the “Ways to Reduce Exposure to MAC from Nat’l Jewish emphasizes water treatment, the most common source of infection.
And, as I mentioned, regardless of the initial source of one’s infection, re-infection through the water system is quite possible as we know it lies in most if not all US water supply. It is this I advocate preventing, at a cost (for highest efficacy whole-house filters) of less than $500.
I have RA, thus a compromised immune system, so indeed it’s easier to understand how I could have been more susceptible. But regardless of the reason for “one person contracting the infection while another does not,” once you have it, just makes sense to prevent re-infection through water ingestion. Nat’l Jewish seems to agree!
Oh, and I also recommend an adjustable bed…helps me tremendously to sleep more easily!

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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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@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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Boomerexpert .. I quite disagree with you.

I have found Dr. Timothy Aksamit of Mayo Clinic, Rochester, Minnesota to be VERY committed to putting time and effort into finding and seeking out the most efficacious treatment available to me at this time .. BUT he is NOT God .. nor does he pretend to be. He is merely a hard working caring doctor doing his level best to help me.

Boomerexpert, perhaps you have not done your own due diligence in finding the very best doctor for your own personal care so that you would feel the same way about your current medical care as I do about mine. I hope you find serenity in your journey as I have found serenity in mine. Peace and serenity have a powerful effect on our health and recovery. Regards, Katherine

Liked by Paula_MAC-2007

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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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