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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@jentaylor, Jen, I washed my Cambridge mask carefully per the below .. air dried and it worked just fine! Hugs! Katherine
From My File Cabinet:
CLEANING Washing Instructions – can I wash the mask? Yes, you can CAREFULLY hand wash it with some mild soap. Then air dry. Note that the masks are washable, but cleaning them only removes dirt not pollution trapped inside the filter. So the mask needs to be replaced after extended use to ensure proper filtration.
Do many doctors insit that I have asthma simply because they don't have any other word to define what mysterious ailment that I have. Asthma is an easy diagnoses to throw around. I was misdiagnosed with Asthma for the first 2 years that I was ill & I was treated with very high doses of steroids, which was the worse thing they could have done for me. I was even giving my own IV Push Solumedrol at home! It was crazy, crazy! Then Johns Hokkims did the methocholine challenge test 2 times and both were negative. And my PFT's have always been quite good & do NOT show any response to albuterol. But STILL, doctors turn to the east diagnoses word- "Asthma!!! It makes me so mad!!!
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1 ReactionHi Afcardieri, I feel much the same... initially I felt so alone (& in some ways I think that is always there, a little bit) BUT then, somehow, we find this absolutely wonderful group of people that are there, to support us, to help educate us, to share ideas & offer suggestions, & just simply take us in as FAMILY! I'm not the best at reading & posting daily...I'm still working on that...but I tell you, the minute I need someone (for whatever reason), they are RIGHT there! Amazing, really! I am so grateful for this group. Words alone do not express my gratitude! It has been a true blessing place upon me! Much love to all, Jen
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1 ReactionThanks Katherine! I love all the knowledge you either have personally or in your easy to access "file cabinet"! You rock! Much love, Jen
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1 ReactionThank you so much for welcoming me, Everyone, so grateful!!! At my initial consultation meeting with my Pulm last January, he said he had many bronchiectasis Mac patients but I do not know who they are, so glad I found All of you here. After starting on each of the 3 meds one at a time, the 3rd med, rifampin, I was confused about the dosage and talked to the pharmacist about it. She looked up the meds dosage and told me the med is for TB listed on the World Health Organization but MAC is not mentioned. Is it because MAC is not contagious person to person? The pharmacist told me my doc makes his own treatment plan. <3
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1 ReactionYes that is why. MAC is not contagious person to person. Mostly isoniazid is used for TB. I know that, only because two of our Chinese children were treated with that. The dosage for the three MAC drugs is determined by your weight. Hope that answers your question.
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1 Reaction@afcardieri .. Fillis .. not to worry .. it sounds like you are being given what we call here on our Forum .. the "Big 3"! I am GLAD your Pulmonologist said he has many MAC patients .. MANY do not have a clue! Just read through the back page ..Educate YOURSELF .. that way you can become your OWN best advocate and have serenity about your treatment plan! We are indeed here for you! Hugs to you! Katherine
From my File Cabinet:
ANTIBIOTIC ..STANDARD TREATMENT Standard treatment of MAC recommended by the American Thoracic Society (ATS) is a combination of 3 or 4 drugs approved by the Food and Drug Administration (FDA). The drugs include:
Clarithromycin (Biaxin) or Azithromycin (Zithromax)
Rifampin (Rifadin) or Rifabutin (Mycobutin) + Ethambutol (Myambutol)
Streptomycin (Strep) or Amikacin (Amikin)
The first three drugs are pills/capsules and may be given daily or three times weekly (Monday-Wednesday-Friday).
While taking these medicines, routine laboratory tests to check kidneys and liver along with a complete blood count (CBC) should be performed, at least routinely for the first six months. For extensive or severe disease, or disease that has failed therapy, the injectables or inhaled streptomycin or amikacin are often added for the first 2 to 4 months of therapy.
@afcardieri, you mentioned the World Health Organization lists the meds for TB but doesn't mention MAC or treatment That may be because there is no official approved treatment for NTM or MAC. So docs have resorted to the meds for TB. That was per the doctors at the NTM conference in May ... where I was sitting, I could hear a gasp among people there.
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1 Reaction@jentaylor, Jen when I was very young .. in my 20's I read an article about a woman who never gave up .. went to 17 doctors before she FINALLY got a proper diagnosis .. she felt SHE knew her body better than any doctor and just wouldn't give up until she knew what was wrong. I never forgot that article raising my children .. one with issues. I would tell you the same. Only YOU know your body .. don't give up until YOU know it is functioning as best it can.
BUT we DO have to be realistic in this current day and age .. THIS medical environment of limited time with the doctors .. THEIR being PUSHED by the insurance companies .. THEIR being PUSHED from above by the almighty dollar to bring in the dollars to make the overhead. They are human too. They went to medical school USUALLY for higher reasons .. to help people .. most of them never dreaming they would be trying to practice medicine in this dollar motivated environment .. we need to have some compassion for them also. It can't be all fun and games for them to be practicing medicine in this day and age. Let's try to keep that in mind AS WE ADVOCATE for OURSELVES! We are here for you! Hugs! Katherine
Hello to everyone - I just received this as an email...it addresses one of the recent emails about the need for research. This sounds promising - I did not include the information about funding but of course they need it. Many of you may receive this email as well, but to get more information, I would just go to NTMGene. Pamela
NTM Info & Research
The NTM community has a unique opportunity to be a part of a groundbreaking genetic study, NTMGene.
This project is aimed at helping physicians and researchers better understand the population at risk based on their genetic background and to improve therapies with the future goal of a more personalized medical approach to treatment. NTMGene will study the genetic susceptibility for NTM-related disease and the pharmacogenomics of anti-NTM medications in the U.S.
Meet Dr. Mehdi Mirsaedi, MD, MPH, who has devoted his career to NTM research and is the principal investigator on NTMGene.
Tell us a little about yourself and how you choose your career-path.
I grew up in Iran with a father who had suffered from lung issues which was the catalyst for my many questions about respiratory infections. As early as middle school I was conducting lab experiments in my basement! I graduated from Tehran University of Medical Science and moved to the U.S. in 2006 for my fellowships in infectious diseases and advanced pulmonology. In 2015, I moved to Miami with my wife to concentrate on TB and Non-TB infections.
How have your NTM patients inspired you?
When I was at the University of Illinois-Chicago, I began to see more and more NTM patients. They were often female, older, tall and thin. I couldn't answer their cries of 'Why me?' which inspired me to continue to focus on the mystery of NTM-related disease. Why are some patients more susceptible to this infection? How do we get diagnoses tailored in the right way so therapies can be more effective?
How will NTMGene benefit those with NTM-related disease?
The prevalence of NTM-related disease is on the rise in North America in people older than 50 years of age - and the population is aging. NTM exceeds that of tuberculous but the why, when and how the infections occurs and to which patients remains largely unknown.
NTMGene is the only known study that will focus on the genomics of NTM-related disease on a national level. We need improved diagnosis and therapies but we still do not understand who is at risk. I believe NTMGene will provide a critical puzzle piece in that mystery. Knowing the genetic predisposition and pharmacogenomics will aid in superior treatment for this disease. And, this data will be a unique contribution to NTM science as a whole.
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