(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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

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!

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!

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.)

@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.

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.

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.

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.

@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

@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.