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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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<br><br><br><br><br>Tks for all the support. U guys r amazing. I'm very scared about all this. Need to tell my children still. They r in there late 20's. It all seems like a bad dream, but I know what I have to do❤️<br><br>
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1 ReactionHi all, I met with Dr. Leventhal MAYO in Jacksonville, on Thursday and after a day of testing to find out the reason for the pain when I breathe on my left lung, the news was positive. He is a great doc. Sraight forward, sense of humor and helps you feel everything will be okay. He spends whatever time you need to spend to get all your questions answered. This is the second time I meet with him. The doc told me it was an infection flare up and because of the location of my broncheictasis and NTM on my left lung, the flare up was most likely causing the pain. He also gave me some good news: my PFT test results showed a slight improvement from the one in May. MAC is dormant. Will have to wait for the sputum results. He doesn't expect to find anything but MAC. If I can stay at the level I am at now, he doesn't for see putting me on the MAC treatment. He told me to keep doing what I am doing regarding preventative measures. If everything can stay the same, I don't have to see him for another year. Fingers crossed this is the case. He told me walking is a must to continue to increase lung strength and function.
On a not so positive note, my blood work is showing my MPV levels are high and when I went back and checked my previous bloodwork the MPV levels have been increasing for the past six months. The past three months the results have spiked considerably. Do any of you had high MPV blood platelet levels in the past or currently? The doctor didn't get to see the blood work before we met so we didn't discuss. I am thankful overall for the results and hopefully the doxi antibiotic will take care of this recent flare up. Rosie
@megan123, Jennifer, remember the mantra "Put my energy into what I can control .. and let go of what I CANNOT control .. the outcome.". That means for you right now Jennifer .. putting your energy into getting an appointment with the best medical care you possible can .. collecting all the medical records you need (this is VERY important so no extra testing is done plus a good history is established) .. THEN letting go of the outcome .. for it truly IS out of your control. We are all behind you in this our shared journey .. ask any questions that may come up .. keep in mind it truly is NOT a bad dream. When I was diagnosed a very wise lady told me:
"If we all put our troubles in a great big circle .. more than likely EACH OF US would take back OUR OWN troubles!"
Jennifer, my husband and I remind ourselves .. we have NOT lost a child .. we have NOT lost a grandchild .. now THAT would be a TROUBLE. YES, WE WOULD take back our OWN troubles .. including my MAC diagnosis! Just give that wise woman's story some thought .. I did and it gave me comfort. Hugs to you! Katherine
Dear All, I don't think he would mind so I am going to repeat a post from @steve1948, regarding a good way to cough when it begins to be a really HARD cough .. @steve1948 has COPD so has learned how to handle this well! Hope it helps someone! Hugs! Katherine
His post: I have fractured 5 ribs from my violent coughing. I used a pillow where it hurt and braced myself against something solid to try and keep the pressure from pushing on the ribs. Excruciating pain when I coughed. Now the is important to note, a therapist told me to keep my mouth as wide open as possible when I cough which takes a good portion of the pressure off the torso (rib cage). It can be unsightly and sometimes my sputum projects so I just keep tissues with me and hold it in front of my mouth, NOT against it. I haven't fractured any more ribs since then. That was invaluable information for me as I cough consistently and sometimes quite violently. Doctor's told me it can take many months for the ribs to heal and there isn't any treatment for such an injury. They don't wrap you anymore because of the chance of pneumonia.
@katemn; While in the mist of 3-antibotic medication, doc told me there is no guarantee I won't get those nasty mycobacterium critters again. However by the time I'm finished my sprint of those pills, he said I won't need to collect sputum after I'm through as I've already them. Thankfully the last sputum test, mine haven't grown and I'm glad more specimens are not required. I wanted to ask - did anyone suffer recurrence of MAC? Thanks/Tessie
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1 ReactionHi Pam, I have copd and IPF cough violently and all day. My doc's tell me I shouldn't be coughing like that with my condition. So I ran across the MAC posts and did some research on it. It said it takes 15 to 18 months on three types of meds to cure the MAC although a few weeks to a few months the patient could see results. They said that the patient needs to show no MAC in the sputum samples for 12 months before they consider it cured. They emphasized not to shorten the medication time because if it comes back it becomes somewhat a super bug, and takes the same treatment with additional medication. The side effects of the medication don't sound pleasant, did you experience any? I've brought the MAC subject to the attention of my doc at the Cleveland Clinic, and we"ll see where that goes. Thanks for the info.
Hello all, I am very curious & I'm wondering if any of you know if you can get repeated MAC infections after treating it??! What are ways to avoid getting MAC again? I read about the water faucet issues on this forum which I've never heard or read about elsewhere! I'm learning SO much by reading everybody's posts! I'm so grateful for being a part of this forum!!! ~Jen
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1 ReactionHi Katherine. I have used the Aerobika for years now and the top"+" is too strong for me. I use #2. So you may be right that the product should be bought thru the website. It may be more expensive but they seem to hold up very well. I have also spoken with the company when they first came out and they couldnt have been nicer.
On another note just got back from Mayo Florida. Had alot of testing. I return in March for a bronchoscopy. They need to sample a nodule that may be the return of NTM or something else. I was prescribed oxygen when needed and now have to nebulize twice daily with saline/aberterol. That is all for now until after bronchoscopy.
I was so pleased with Mayo- doctors, nurses, receptionists. Should have gone there sooner. Have a great day, y'all!
Greetings all!
Maryjo's post brought up a question for me. I have been on nebulizer 7 months. I do albuterol and budesonide meds with it. but it's getting very tiresome. Does anyone know if a portable inhaler of those drugs would be as effective for my bronchiectasis as the nebulizer is?
Thanks and blessings,
David
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1 ReactionMaryJo, I am happy to read your experience is the same as mine has been at the Mayo in Jacksonville's pulmonary dept. Sending positive thoughts your bronchoscopy goes well. I have had three of these since I started this journey in 2015.
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