(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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!
KateMN
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@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
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
cila
@cila
@cila
Posts: 91
Joined: May 31, 2016
@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!
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.
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@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!
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
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Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
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
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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
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@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.
Hello Digmeme, good for you that you did NOT give up! Just keep educating yourself .. sharing your knowledge on this Forum and taking good care of yourself! We are all here for you on our shared journey! Hugs to you! Katherine
mimi68
@mimi68
@mimi68
Posts: 15
Joined: Jun 14, 2016
I tuned into the Doctor channel on SiriusXM yesterday morning and again in the afternoon for the episodes on NTM. I was disappointed to only get bits and pieces of the morning show as apparently either the radio station or Sirius was having technical difficulties and it kept cutting out on me. The afternoon show was even worse. At first I thought it may be our internet server, but every other site worked. Anyway, I did get a few bits of good information.
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janovr
@janovr
@janovr
Posts: 52
Joined: Feb 12, 2016
@mimi68 I tuned into the Doctor channel on SiriusXM yesterday morning and again in the afternoon for the episodes on NTM. I was disappointed to only get bits and pieces of the morning show as apparently either the radio station or Sirius was having technical difficulties and it kept cutting out on me. The afternoon show was even worse. At first I thought it may be our internet server, but every other site worked. Anyway, I did get a few bits of good information.
Mimi68,
Same thing happened to me!
Could barely get through the distortion. Surely hope there is a print out available!
If anyone lives in the Atlanta, GA area, there is a new MAC Specialist at Emory/ St Joseph’s Hospital. Dr. Colin Swenson is willing to listen. He spent an hour with me. His staff is super kind too!
Jan/GA
mimi68
@mimi68
@mimi68
Posts: 15
Joined: Jun 14, 2016
Hi Jan/GA,
I went into the Doctor channel this afternoon and was able to get the episode about NTM and it came in very clearly. Was able to listen to the whole thing.
heathert
@heathert
@heathert
Posts: 455
Joined: Mar 07, 2016
Hi mimi68 was there any new information for us?
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
Hello All, I just received this email from the NTMir .. thought I’d share it in case anyone is interested! Katherine
It said:
You are being asked to participate in research to help develop a clinical trial on pneumonia
NTMir is forwarding the following information on behalf of Duke University:
We are doing research to find out what patients and caregivers think about a new way for enrolling patients into a clinical trial on pneumonia. We are focusing on pneumonia that people get in the hospital or when on a machine that helps people to breathe. The research involves one face-to-face or telephone interview and two follow-up online surveys.
Patients can take part if:
•They are 18 years of age or older
•They have: •Been in the intensive care unit (ICU) or in the hospital overnight at least once in the last two years and have had a previous diagnosis of pneumonia while in the hospital, a short-term illness, a longer-term illness, physical trauma, or surgery, or are immunocompromised, OR
•Chronic lung disease (for example: chronic obstructive pulmonary disease [COPD] and cystic fibrosis)
Patients and caregivers will each receive compensation for participating in the interview. In addition, for each completed online survey, patients and caregivers will also receive compensation. If patients and caregivers complete all of the data collection events, an additional compensation will be provided at the end of the study, to thank participants for their participation.
Although we hope you will join us, participation is voluntary. There are no direct benefits from participating. Anything you say during the interview will be kept confidential, and your name will not be included in any reports, articles, or presentations about this study.
Patients can take part even if their legally-authorized representative does not. Likewise, caregivers can take part even if their loved one does not.
If you would like more details about the study, or you would like to schedule an interview, please contact the study’s research assistant, Katelyn Blanchard, at 1-877-637-1490 or via email at katelyn.blanchard@dm.duke.edu.
— The Clinical Trials Transformation Initiative at Duke University
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?
I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!
“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!
Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.
After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine
JanetJ
@justjanet
@justjanet
Posts: 27
Joined: Jun 08, 2016
@katemn @justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?
I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!
“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!
Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.
After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine
Sorry Katherine! Just hit reply and thought I was on the forum then or not paying enough attention. Not the brightest bulb on the planet. 🙂 Thanks for all the tips. I will definitely use them.
Have a great day-
Janet
mimi68
@mimi68
@mimi68
Posts: 15
Joined: Jun 14, 2016
@heathert Hi mimi68 was there any new information for us?
Hi Heathert, Since I am new to this site and also this blog, I felt I got some valuable information to discuss with my pulmonologist. They talked about symptoms, treatment, sources from which the infection comes, which some of this is repeat of what I’ve already read. I was mostly interested in the testing procedures for this disease as my doctor is rather set on treating it before we are even certain that I have it. They also talked about ways to prevent getting the infection. I feel that if you have access to SiriusXM, Doctor channel 110, it will be worth your while to listen to it. The part about NTM is about an hour long.
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@katemn @justjanet
Hi Janet,
Let’s communicate on the Forum .. this is REALLY good information to share with ALL! You did SUCH a good job! Do you mind if I put it on the Forum?
I found out about googling the bios of doctors the hard way because of my husband’s health. He has leukemia .. a blood cancer .. AND I found out the hard way that we had been referred to an Oncologist who was a Specialist in COLON CANCER!! I was SO angry!! Did not even discover it until we were spending winters in a warmer climate AND I then realized I needed to do MORE “Due Diligence” and started my googling doctor bios .. and I found an Oncologist who SPECIALIZED in leukemia! Who then put my husband on a newly FDA approved chemotherapy .. my husband is alive today due to that man as far as I am concerned!
“Due Diligence” does the job as you have well found out! Good for you! I am so happy for you that you found the very best Center for Bronchiectasis Care and they treat NTM .. PLUS it is covered by your insurance! Sorry .. I do NOT consider it “luck” for you! You absolutely deserve this! You have worked so hard with your Plan A .. Plan B .. Plan C. You’ve done such a good job with your research and planning!
Now I would suggest you gather up ALL the records you can find .. doctor office notes .. Xray .. MRI .. Ultra sounds etc. ANYTHING that you can think of .. get it organized. A lot of doctor offices and hospitals will put you off .. my solution is to get a date and tell them I WILL pick it up personally!! That way I can sign whatever legal document necessary PLUS it gives them a deadline and I know I will have them for the appointment. THEN .. do NOT give up your copies. Make these copies your PERSONAL copies for future reference as needed. Make sure any NEW doctor makes COPIES of YOUR copies! I know in my home state doctor offices are only legally required to keep medical records for seven years. So it is important with our diseases to have our own records to show the disease history and progression. Then write down a detailed list of questions for your new doctor. If you google it you will find many doctor question lists. Personally I cut and paste many of the various question lists and came up with my own.
After that? Just let go! Know that you need to “Put your energy into what you can control .. and let go of what you can’t control!” You have already put your energy into doing your “Due Diligence” .. now you just need to be serene about the outcome .. you can’t control the outcome. Just keep us posted here on the Forum .. know we are here for you! Sending you a hug! Katherine
Janet, keep us posted! You are doing such a great job! Sending you a Hug! Katherine
@turtle3656
In reply to @jms64
there is research in this area- go to NTMinfo.org website for more information- you may qualify for a trial.
Liked by Katherine, Alumni Mentor