(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

Jump to this post

Thanks Katherine for getting us that information. And so quickly, too!!

REPLY

You will find more information and support programs at the bronchiectasis and NTM social community (find with google search)

REPLY

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

REPLY

Hello mimi68, sorry to hear about your test. Can your Dr. order you a CT scan or Bronchoscopy to see if you really has the MAC. That is how they find out about mine. I have been on the meds. for two weeks now. I hope i can help and I will pray for you. Good luck and look at the bright side.

REPLY

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.

REPLY
@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

Jump to this post

Hello Ali, welcome to this Forum .. I think you will find a lot of information and support here .. there are a lot of good people!

If I was sitting in your shoes .. I really like Cila’s idea pf requesting a Bronchoscopy .. IF you are not willing to wait for the additional sputum tests and time required .. since you have trouble producing enough sputum. Perhaps your doctor can find enough medical reasons to get Medicare to cover the expense.

In terms of dealing with the antibiotic treatment I would encourage you to read through the pages of this Forum .. you will be amazed how much you will learn about this disease .. remember “Knowledge is Power” .. AND Knowledge takes away Fear! Fear of the unknown is what holds us captive .. like the child who is afraid of the dark .. when they know darkness holds NO boogieman .. they lose their fear! When you do your “Due Diligence” and gain knowledge about the antibiotic treatment .. you will lose your fear.

Plus remember .. we on this Forum are here for you .. we are all on this shared journey together! Sending you a Hug! Katherine

REPLY

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!

REPLY
@jms64

I have been treated for Mac since 2010. Been on medication since with progressing side effects from the drugs. I was taken off the medication in June. Since that time the cough has returned along with some bloody sputum. Had another CT last week and return to the doctor tomorrow for more evaluation. Do any of you have chest pain or discomfort with this disease? I do not have this problem while on the medication. Now that I am off of it I am experiencing the tightness and pressure in the chest area. It also has gone into COPD. Use an inhaler. Weight loss and the medication has lowered my white count and plat.

Jump to this post

Finding a doctor who will TALK to you is the answer. I messed around with one for 6 months and yesterday found the right one. I took 5 pages of notes and he spent 55 minutes with me answering questions. I feel like I am on the right road now! Spent lots of $$$$ on drugs that he could not believe I was taking such high dosages of. True……he, too, says all of us need to get the drug companies to research MAI/MAC now that many of us are coming down with it………..wonder how we go about that? I will ask him the next time I see him!

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!

Jump to this post

Hello Dmille .. I am SOOO glad you finally found a doctor who you have confidence in. An Infectious Disease Specialist is certainly going to know more about MAC/MAI than most doctors. Have you asked him how many other MAI/MAC patients he has treated? That is always helpful info .. just like asking a surgeon “How many of this type of surgeons have you performed in the past year?” It gives you a feel for their experience in your particular issue.

Our bodies are so unique .. what dosage .. what mix of drugs that may work for one person .. may NOT work for another person. A doctor just can’t “rubber stamp” a patient with a plan .. it truly is a complex puzzle of sputum test results, CT scans, Xray changes, your answers to their questions .. the doctor must put all that together to determine your specific treatment plan .. AND when to alter or change the plan. Complicated .. and WHY you need a good doctor that you have faith in! It sounds like you have been lucky enough to have found yours .. YEAH! I’m Happy for you! Keep us posted on your progress .. we’re rooting for you!

(Yes, I’ve investigated essential oils .. BUT I also have a wonderful Homeopathic Practitioner who helps me tremendously with my coughing .. AND the essential oil “Raven” from Young Living that is excellent for coughing counter acts my “remedy” from my Homeopathic Practitioner so I stopped using it.)

REPLY
@boomerexpert

Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old…we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis…they deserve better…so do we.

Jump to this post

@katemn, I think attitude is a big part of my ‘recovery’ and just being able to lead a ‘good life’. I have seen pulmonology patients that take me down with humility – I have nothing to complain about, although MAC/MAI is a challenging disease to have. I try my best each day.

REPLY

Want info on Nontuberculous mycobacterial lung disease? I recently subscribed to this website http://www.ntminfo.org/ (Nontuberculous mycobacterium -NTM- is what they call MAC/MAI). This is as very good website for into. And several physicians are having an upcoming radio discussion re. NTM:

Here’s the info I received and I’m not sure of the original time zone, the rebroadcast is Eastern time: Would be nice if we could get all the doctors together for a ‘seminar’ for us!!!!!

Live Broadcast 6:00 a.m.
Rebroadcast 4:00 p.m.
http://www.ntminfo.org/

Nontuberculous mycobacterial lung disease will be a featured topic of discussion on Sirius XM’s Doctor Radio (Channel 110) on Tuesday, June 21st. The broadcast starts at 6:00 a.m., featuring guest experts Dr. Joe Falkinham from Virginia Tech and Dr. Leah Lande from Lankenau Medical Center in Wynnewood, PA.

If you are a SiriusXM subscriber, you can tune in to Tuesday morning’s broadcast on Channel 110. Those without a subscription can sign up for a free trial to listen online at http://www.siriusxm.com. The show rebroadcasts the same day at 4:00 p.m. Eastern.

You can email your questions to the show at docs@siriusxm.com (please note in the email that it is for Drs. Falkinham / Lande / Dr. Adams). You can also call in during the show at 1-877-NYU-DOCS (1-877-698-3627).

Doctor Radio is hosted by Dr. Francis Adams, a well known New York pulmonologist who has taken an interest in NTM lung disease, featuring it on his program many times. Dr. Falkinham is a leading microbiologist and expert on NTM and waterborne pathogens. Dr. Lande is a pulmonologist and researcher in the Philadelphia, PA area.

REPLY
@colleenyoung

Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219

Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn

Jump to this post

Thank you SO much, Colleen, for thinking of us and providing this info!! Awesome.
I live in Milwaukee, WI and see that is one of the sites listed. Who do I contact to see if this would be a good study for ME? My pulmonologist is at the local teaching hospital in Milwaukee so I’d think that is the location of the trial here.

Liked by Ali Skahan

REPLY
@mimi68

I just signed on to this site in hopes of getting some answers from some of you who have been going through this. I started out with bronchitis last fall, and through a sputum test, it was determined that I had a trace of MAC. I had two more sputum tests, the 2nd one was negative and the 3rd one done in March was positive. I saw my pulmonlogist yesterday and he is very surprised that I have no symptoms of MAC. He is going to have me do 3 more sputum tests, hoping to get 3 negatives. I am wondering if anyone else has tested positive, but with no symptoms. My doctor said that maybe I’ve had this for a lot longer and since I’ve had no reason to be tested, it was never discovered. I am ready to opt for no treatment at this time and if I develop symptoms in the future, then deal with it at that time. My doctor is leaning toward having me having me go on the antibiotic treatment now so I would have a head-start, if in fact the next 3 tests show that I do have the infection. If anyone has any answers or comments, I would love to hear from you.

Jump to this post

I too would recommend a Bronchoscopy, to see how widespread the disease is. I’ve had 2, plus a lavage (lung wash) over the past 8-9 years. It was painless for me and not uncomfortable at all.

Liked by Ali Skahan

REPLY
@colleenyoung

Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator Timothy Aksamit, M.D. at Mayo Clinic:
Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219

Upon further investigation, I discovered that the trial is being done in 86 locations in 13 different countries. If you`re interested in participating, there may be a center near you that is involved. https://clinicaltrials.gov/ct2/show/study/NCT02344004?show_locs=Y#locn

Jump to this post

@Paula_MAC2007 I would start by talking to your pulmonologist about whether you fit the eligibility criteria. To learn more about the study and to see if it would be a good study for you, you or your pulmonologist can contact the study research staff person Dianne Nowicke by email at NTMStudy@hudsonglobal.com. When you email her, refer to this study by its ClinicalTrials.gov identifier: NCT02344004

She can tell you more about what it involves to help you decide if it’s right for you.

If you decide to find out more, please let us know what you find out. I’m sure others in this thread would be interested to hear about your inquiries. Thanks

Liked by Ali Skahan

REPLY
@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.

Jump to this post

@mimi68, I’ve never had a sputum sample – not reliable enough to cough up. So my pulmonologist replies on bronchoscopies, lavages and CAT scans over these 8-9 years. I was misdiagnosed for 2 years before getting a diagnosis of MAC which let the bacteria grow and get a hold of my lungs! After having my first bronchoscopy, the pulmonologist called me that night to tell me about the bacteria growing rapidly from one of the samples – the other sample was sent to see if I had lung cancer which he also thought was a probability. So I only had to wait 8 hrs for some results, then I only waited 2 more days for a final MAC diagnosis. I’d guess it’s where they send the samples that may determine how long to get the results. Ask your Doc why it will take so long for results. My best wishes to you! Keep us posted.

REPLY
Please login or register to post a reply.