1. < MAC & Bronchiectasis

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

boomerexpert | @boomerexpert | Jul 20, 2016

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...

REPLY
5 replies
heathert | @heathert | Jul 21, 2016

Thanks boomerexpert for that article, I see they say that the pink scum bacteria (methylobacterium) and ntm do not coexist, can they not get us to inhale lots of methylobacterium to kill off the ntm? I wish it was that easy!

REPLY
mimi68 | @mimi68 | Jul 23, 2016
In reply to @mimi68 "Thank you for your response and concern. I wondered about another test that would be faster,..." + (show)
@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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I may have underestimated my pulmonologist, as he has set me up with an appointment to see a new infectious disease doctor that has just come into our area. I will see him on Aug 2.

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 26, 2016
In reply to @digmeme "I have been dealing with this since it was finally diagnosed January 2016. I began the..." + (show)
@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!

Jump to this post

Hello @sophie1019,
One of the antibiotics can cause eye problems, even blindness. So you do need to see an ophthalmologist yearly. Also, another of the drugs causes hearing loss - it's thought when you stop the drugs, that your hearing will return. I have hearing loss in my left ear. But I've been on the drugs for about 8 years so I don't expect hearing to return to that ear. However, I CAN BREATHE and do feel a lot better after being correctly diagnosed, going on the meds, and following my pulmonologist's recommendations about exercise and rest. I'm doing great today. If I don't tell someone, they would have no idea that I have NTM or MAC, am on the 3 drugs, or that's why I make it a point to do Pilates or gentle Yoga 5 times a week. I'm not one of those people into exercise ... but it DOES make a big difference.

REPLY
heathert | @heathert | Jul 26, 2016
In reply to @digmeme "I have been dealing with this since it was finally diagnosed January 2016. I began the..." + (show)
@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!

Jump to this post

Hi Paula great to hear you are feeling good, have you been on the same 3 antibiotics for 8 years or have you become resistant to some and then changed and if so how many times in 8 years? Is your hearing loss really bad or just a little?looks like I will be on the antibiotics for the long haul .Thanks for your help.

REPLY
Sophie | @sophie1019 | Jul 26, 2016
In reply to @digmeme "I have been dealing with this since it was finally diagnosed January 2016. I began the..." + (show)
@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!

Jump to this post

Since you have been on for such a long time, how is your eyesight? Do you get your eyes checked every three months? My doctor did a baseline and my eyes are fine. I have to go every three months to have them checked. I have not noticed any hearing loss but i have only been on meds for one month. I hope and pray that you continue to do well and hopefully you can come off soon. Since i have been taking the meds i notice that i breathe better but i still have a chronic cough.... please respond. Thank you.

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 26, 2016
In reply to @digmeme "I have been dealing with this since it was finally diagnosed January 2016. I began the..." + (show)
@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!

Jump to this post

Hello Heathert,

I've posted on here a lot with my experience with NTM or MAC. But to answer your questions ...
I've been on the same 3 antibiotics since 2007, although in different dosages and days of the week.
- For the first 2 years, I took the drugs every day. My pulmonologist then left to practice in Florida.
- My new pulmonologist - who is fabulous, at a teaching hospital, & knows a lot about NTM or MAC - lowered the dosage of one drug. (The 3 drugs are prescribed based on your height & weight, and he felt the quantity for one wasn't right.) I continued to take the 3 drugs each day. I've also been prescribed VitaminD - - 50,000 IUs one day a week, 5,000 IUs the other days. My Vit-D was exceedingly low.
- After 4-5 years and doing great, I was going out of the country on vacation and wanted to stop the drugs. I was symptom-free. So I negotiated with my doc and stopped the drugs. 3-4 months later, the coughing & mucus came back and I got really sick. I was off the drugs a total of 6 months, and then my doc and I decided I needed to resume taking them . . . but this time I only take the 3 drugs on Mon/Wed/Fri. This has worked very well the past 3+ years. However, I learned several months ago that while 2 areas with NTM in my lung have 'receded' (my word, I can't recall the word(s) my pulmonologist used), I have 2 new cavities that weren't there two years ago on a CAT scan. Now I'm back seeing my doc every 3-4 months. But I am feeling OK this summer. Had a difficult Jan-April 2016 with a bad batch of the NTM drugs that made me nauseous.

As far as we know, I have not gotten immune to any of the 3 drugs . . . BUT there is always that chance.

If you read thru some of the postings here, you'll find a real wealth of information. Hang in there!

REPLY
Sophie | @sophie1019 | Jul 26, 2016
In reply to @digmeme "I have been dealing with this since it was finally diagnosed January 2016. I began the..." + (show)
@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!

Jump to this post

Hi Heather how are you doing and how long have you been on meds? Have you noticed any eye/hearing problems???

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | Jul 26, 2016
In reply to @digmeme "I have been dealing with this since it was finally diagnosed January 2016. I began the..." + (show)
@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!

Jump to this post

My ophthalmologist (for 25 years) knew about NTM or MAC when I went to him with my diagnosis. He had one patient who had to stop the drugs due to sight issues. My eyes are fine, I saw my ophthalmologist every 6 months for the first 2 years and now only once a year.

The hearing loss from one of the drugs is due to flattening of the hairs in the inner ear; it's thought when the drug is stopped, the flattening stops & hearing returns. My hearing loss is not that bad ... one on one discussions I am fine. But eventually I think a hearing aid will be needed for this ear.

Your cough should go away after being on the drugs for awhile. After a year or so, I began to feel like my old self. I really have no complaints today. Life is really good, and NTM or MAC doesn't define me . . . very few people know I have the disease.

REPLY
Sophie | @sophie1019 | Jul 26, 2016
In reply to @digmeme "I have been dealing with this since it was finally diagnosed January 2016. I began the..." + (show)
@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!

Jump to this post

Thanks for such a quick response. I am so glad you are doing okay. I feel really good too, and the disease will not define me either. When i first started on the meds i had diarrhea, but not anymore. I do the self color blindness test which you czn find as an app in your smartphone or computer. My lung doc suggestec i download and take the test several times a month to keep check on my eyes... lets keep in touch.......

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