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!

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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:
- 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.

JanetJ | @justjanet | Jun 19, 2016
In reply to @mimi68 "I just signed on to this site in hopes of getting some answers from some of..." + (show)
@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.

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Hi Mimi,
You shouldn't have to login unless you are trying to access the message board and then you would have to set up an account. One good thing to check out - If you can see the header bar - click on Healthcare, then Physicians Referral List, then your state. You will come up with a list of providers that specialize in MAC/MAI. Then click on the other items on the header bar for all sorts of information. I hope that works! I will continue to work with a pulmonologist but I'm going to see the infectious disease specialist Dr. listed for my state (NC) as he is the expert at that in my state. I want someone that has a better idea about when I should start treatment. I'm just not confident that my pulm. Dr. really knows that. Probably due to all I've learned here. The people on this site have done more to empower me and make me feel confident that this will just not be a problem. It's something I'll have to deal with, but things could always be worse and I have a support group to give me all kinds of hints on dealing with everything imaginable. What a weight lifted off my shoulders!!

Let me know how your tests turn out. I just had a bronchoscopy this last Wednesday so I should be getting some results in a few weeks I think. Take care. Janet

REPLY
mimi68 | @mimi68 | Jun 19, 2016
In reply to @mimi68 "I just signed on to this site in hopes of getting some answers from some of..." + (show)
@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.

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Hi Janet, I found the doctor referral list, unfortunately there are none listed within a couple of hundred miles from me (Vermont). I will keep searching though. Thank you again for your help and good luck with your test results; let me know how you make out. Mimi

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Martin Jensen, Volunteer Mentor | @predictable | Jun 19, 2016
In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my "Due Diligence" .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your "Due Diligence"! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was 'BECOMING MY DISEASE"! It became my FOCUS in life.

I had to have a "Coming to Jesus" moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I'm just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don't allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn't staring me In the face .. it doesn't exist .. denial has worked wonders since 2007 and I've live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

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@katemn, your message yesterday was among the strongest, most sensible and reasonable, reassuring I have seen here or heard among my associates in my senior community. Too many of my neighbors dwell on the information they have -- and the information they still want -- about their infirmities (better word than "illnesses" or "diseases"). Their attention is dominated by the physical and mental miscues (better word than "accidents," "foul-ups," "injuries" and the like) they catch themselves enduring. I can't say better what you have said above, so I hope everybody will read your solid affirmation of who you are and what you are not. Thank you so much.

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Katherine, Alumni Mentor | @katemn | Jun 19, 2016
In reply to @mimi68 "I just signed on to this site in hopes of getting some answers from some of..." + (show)
@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.

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Hi Janet, be sure to let us know how your bronchoscopy results turn out .. sending you lots of positive energy! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 19, 2016
In reply to @mimi68 "I just signed on to this site in hopes of getting some answers from some of..." + (show)
@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.

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Mimi, what WONDERFUL information you have shared with our Forum .. WOW! Such EXCELLENT resources .. thank you! Especially for resources of doctors in case your insurance will only pay for certain doctors. I have really found by googling the doctor .. finding out where they went to school .. their area of "interest' .. their specialty .. all those kinds of things help me evaluate if that doctor might know enough about MAI/MAC to be a good fit for me. THEN I for sure want to know how many patients they have treated for MY disease! I have NO interest in being their guinea pig .. learning curve! I've learned the hard way with my own .. and my husband's health to be careful in this manner .. you have done a GREAT job at this Mimi .. I applaud you! Thank you for sharing all your research!

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Turtle3656 | @turtle3656 | Jun 20, 2016
In reply to @jms64 "I have been treated for Mac since 2010. Been on medication since with progressing side effects..." + (show)
@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.

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there is research in this area- go to NTMinfo.org website for more information- you may qualify for a trial.

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Turtle3656 | @turtle3656 | Jun 20, 2016
In reply to @debbiet "My husband was just diagnosed with MAC and put on the cocktail of three drugs they..." + (show)
@debbiet

My husband was just diagnosed with MAC and put on the cocktail of three drugs they give to treat the disease.
After day one on the drugs he was miserable he was fatigued couldn't eat and was just miserable. He was suppose to be on these 6 pills three days a week . Any body have this experience

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New resources -including a hotline to talk to someone at http://www.bronchandNTM360social.org as well as other educational materials on http://www.ntminfo.org. You may also look into joining an ongoing trial for patients with MAC

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cila | @cila | Jun 20, 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!

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Thank you Katherine for all the informations, I can look at the bright side of life and try not to think about MAC. I have GERD and taking Lansoprazole ( generic for Prevacid). I have not taking my cholesterol meds and my vitamins. I used to take Centrum Silver, Calcium, and Fish Oil not anymore, I stop all that since I took all the MAC meds. I will see my Primary Dr. end of this month and I will ask him about the Vitamins. I start walking 1ml. a day hopefully I can increase it later. I hope I can maintain my cholesterol down so I don't have to take the meds. I live in Montgomery AL. and we don't have good Drs. over here. I saw a Dr. here in Montgomery but I'm not happy so I asked Primary Dr. to referred me to to Birmingham at UAB for second opinion. I'm not sure if he know much about MAC but spend some time with me. I'm learning about this disease b/c of all of you. Thank you so much everyone.

REPLY
Katherine, Alumni Mentor | @katemn | Jun 20, 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!

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Good for you Cila that you are walking each day .. that is just GREAT!! Walking is such a good exercise .. AND exercise is such a good thing for both our bodies and our spirits. So happy for you! It sounds like you are really trying to get a good handle on your disease and just how to go about being a good Advocate for yourself .. that is EXACTLY what each of us must do. No one cares about our bodies as much as we NEED to do .. and as busy as doctors are required by the system to be today .. it is doubly important that we DO educate ourselves .. and then advocate for whatever we feel we need. You are CERTAINLY doing that by getting a second opinion .. good for you! Just keep coming back to our Forum .. sharing what you learn .. and learning from each other. That is what it is all about! Sending you a Hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 20, 2016

Lauralynn
I was fortunate to have been diagnosed early, 2006, at age 47, the bronchiectasis was mild to moderate, I was asymptomatic, but I had NTM/ MAC. A year later I got into a study at the NIH where I found out that I was also an Alpha (ZZ) Again, fortunately, pretty much asymptomatic for Alpha-1. I was on the cocktail of 3 - 4 antibiotics for over 6 years, but kept culturing positive for MAC and my bronchiectasis was starting to progress. I got into the clinical trial for Arikayce in 2013. I immediately started culturing negative for NTM. I highly recommend for anyone with NTM and not responding to the standard drugs to reach out to the 3rd phase of this clinical trial. You can call 866-825-3418 for information. I really believe inhaled therapy can be very effective
+++++++++++++++++

Hello Lauralynn, I really do hope you join us on the Forum: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=8#post-226502 .. it is a great group of people!

BUT I am really writing you because the similarity really hit me .. hmmm Alpha (ZZ) .. now that sounds familiar?! Then I remembered .. I had done what doctors .. AND Dr. Aksamit refer to as the “spit test” called 23andme (https://www.23andme.com/) .. after my oldest son had done it .. kind of as a kick. BUT I find out some really kind of interesting things.

ONE was that I had a “genetic mutation” in the lung area! Hmmm .. I have certainly had enough lung issues. Mine is Alpha (MZ): Has one M and one Z form of the SERPINA1 gene. People with this combination may be at increased risk for liver disease, and may experience decreased lung function if they smoke.

Being quite sure Dr. Aksamit would laugh at the results of this “spit test” .. I showed him a copy of the results of this .. Nope! He requested a copy of it. I know there of probably thousands of undiscovered genes and 23andme only look at 23 .. BUT that is at least 23 more than I knew about before!

SO .. I was intrigued by your information .. AND will keep it mind on my journey with my Bronchiectasis, MAC, Reactive Airway Disease .. who really know exactly what is going on at this given moment?! So thank you for this good information. I hope you don’t mind if I repost your note and my reply on the MAC Forum? We are always trying to share new and good information! Hope it is ok with you? Katherine

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